Guideline for Alzheimer’s Disease Management

California Workgroup on Guidelines for Alzheimer’s Disease Management

Final RepoRt 2008
Supported by the State of California, Department of Public Health
California Version © april 2008

Guideline for Alzheimer’s Disease Management
California Workgroup on Guidelines for Alzheimer’s Disease Management
Final RepoRt 2008

Supported by the State of California, Department of Public Health
California Version © april 2008

Acknowledgments We gratefully acknowledge the members of the California Workgroup on Guidelines for Alzheimer’s Disease Management for their efforts in updating this guideline. This effort would not have been possible without their participation in the following work groups:

Executive Committee Debra Cherry, PhD (Co-Director) Alzheimer’s Association, Calif. Southland Freddi Segal-Gidan, PA, PhD (Co-Director) USC ADRC & USC/ Rancho Los Amigos ARCC Patrick Fox, MSW, PhD UCSF Institute for Health & Aging Carol Hahn, MSN, RN (Manager) Alzheimer’s Association, Calif. Southland James Howard, MS California Department of Public Health Kathony Jerauld, MPH California Department of Public Health Neal Kohatsu, MD, MPH California Department of Public Health Kit Lackey California Department of Public Health Brian Mittman, PhD VA Greater LA Healthcare System at West LA Dodie Tyrrell, MA California Department of Public Health Barbara Vickrey, MD, MPH UCLA Alzheimer’s Center

Assessment Josh Chodosh, MD (Co-Chair) VA Greater LA Healthcare System/ UCLA Division of Geriatrics Laura Mosqueda, MD (Co-Chair) Program in Geriatrics, UCI School of Medicine Linda Aoyama, MD Healthcare Partners Medical Group Michael-Anne Browne, MD Blue Shield of California Tony Kuo, MD, MSHS Office of Senior Health, LA County Dept. of Public Health Verna Porter, MD UCLA Department of Neurology Lisa Yarick, MSW Kaiser Permanente

Treatment Bradley Williams, PharmD (Chair) USC School of Pharmacy Cynthia Barton, RN, MSN, GNP UCSF ARCC Jeffrey Cummings, MD Mary S. Easton Center for AD Research at UCLA Denise Feil, MD, MPH VA Greater LA Healthcare System at West LA R. Ron Finely, BS Pharm, RPh. UC School of Pharmacy, Dept. of Clinical Pharmacy James Hendrickson, MD SCAN Healthplan Cheryl Phillips, MD On Lok Lifeways Jennifer Serafin, RN, GNP Natl Conference of Gerontological Nurse Practitioners Elizabeth Smalley, MD Healthcare Partners Medical Group Alex Sherriffs, MD UCSF-Fresno Alzheimer’s Research Center

Patient and Caregiver Education and Support Linda Hewett, Psy.D (Chair) UCSF- Fresno Alzheimer’s Research Center Cordula Dick-Muehlke, PhD CAADS & Alzheimer’s Family Services Center Bunni Dybnis, MA, MFT, CMC National Assoc. of Professional Geriatric Care Managers & LivHome Elizabeth Edgerly, PhD Alzheimer’s Association, Northern Calif. & Northern Nevada Dolores Gallagher-Thompson, PhD Dept. of Psychiatry & Behavioral Sciences, Stanford University School of Medicine Kathleen Kelly, MPA Family Caregiver Alliance Helene Martel, MA Care Management Institute, Kaiser Permanente Thomas A. Porter AARP Ramón Valle, PhD San Diego State University Roberto Velasquez, MSG Alzheimer’s Association, San Diego/Imperial

Reporting Requirements Fay Blix, JD (Chair) National Academy of Elder Law Attorneys Kit Lackey California Department of Public Health Janet Morris, JD Bet Tzedek Legal Services

Additional Acknowledgments We sincerely acknowledge the efforts of the Guideline Project’s Research Associate, Randi Jones, JD for her remarkable efforts compiling data for this review and drafting significant sections of the report. Thanks also go to Mira Byrd, PharmD candidate for her valuable assistance in the revision of the drug therapy tables. Final thanks to Amy Landers of the Alzheimer’s Association for the development of a dissemination plan for this guideline.

and. causing problems with memory. 1995) and were supported in part by the State of California. Because the Guideline is intended for use by PCPs who will encounter Alzheimer’s Disease in the course of their work.pReFaCe T his report updates and expands the Guidelines for Alzheimer’s Disease Management (California Workgroup on Guidelines for Alzheimer’s Disease Management. and Caregiver Resource Centers. Alzheimer’s Disease gets worse over time.. family and social relationships. 2002). 2006). Hart. PCPs should be able to provide or recommend a wide variety of services beyond medical management of Alzheimer’s Disease and comorbid conditions. and it is fatal. who may lack the information and other resources they need to treat this growing and demanding population (Reuben. assistance to families and caregivers. 2003). and the Alzheimer‘s Association. incorporating the results of this tremendous body of new work. Nevertheless. and the fifth leading cause for individuals 65 and older (Alzheimer’s Association). The revised Guideline and this report are based in large part on a review of journal articles and meta-analyses published after 2001. including recommendations regarding psychosocial issues. 2008). Kamberg. Alzheimer’s Disease destroys brain cells. Area Agencies on Aging. an increase of 25% since the previous version of this Guideline was published. This Guideline is intended to provide assistance to PCPs in offering comprehensive care to patients with Alzheimer’s Disease and those who care for them over the course of their illness. as well as helplines and outreach services operated by the Alzheimer’s Association. Department of Health Services. we use the word “patients” throughout this report. Councils on Aging. Purpose and Scope of This Report More than 5 million Americans now have Alzheimer’s Disease (Alzheimer’s Association. and skilled nursing care. & Wenger. respite care. and behavior severe enough to affect work. treatment. and that PCPs will be called upon to provide a wide spectrum of information and resources to assist them in dealing with this challenging. & Butrum. and management of Alzheimer’s Disease. which itself was a revision of the California Workgroup’s original Guideline published in 1998. sometimes overwhelming condition. it is incurable. Since the 2002 revision was completed. the most basic activities of daily living. All of these documents were based upon work begun by the Ad Hoc Standards of Care Committee of the Alzheimer’s Disease Diagnostic and Treatment Centers (ADDTCs) of California (Hewett. California Southland Chapter. Bass. . generating new insights into the progression. there has been an explosion of research in the field. such as adult day services. eventually. Roth. However. and referral to legal and financial resources in the community. Many specialized services are available to help patients and families manage these aspects of AD. it is important to recognize that the needs of people with Alzheimer’s Disease and their families extend far beyond the realm of medical treatment. thinking. Most older adults—including those with Alzheimer’s Disease—receive their medical care from Primary Care Practitioners (PCPs) (Callahan et al. Today it is the seventh leading cause of death in the United States.

the Guideline’s recommendations themselves were designed to fit on one page for handy reference and organized by major care issues (assessment.g. among others: • the importance of cultural and linguistic factors in Alzheimer’s Disease treatment. . New Format This version of the report also has been reformatted for convenience and ease of use. a year after release of the previous version of this Guideline. Websites containing valuable resources for both PCPs and patients are included. as well as updated references for many points discussed in previous versions. Food and Drug Administration (FDA) for treatment of moderate to severe Alzheimer’s Disease. The Treatment section includes two tables devoted to its use. randomized clinical trial) or “moderate. recommendations that are not evidence-based are nevertheless supported by expert opinion and Workgroup consensus. In many cases. In the ensuing 6 years.New Information The 2002 Guideline was written prior to the development and testing of some new pharmacological agents. These topics include. The language used throughout the report reflects the strength of the supporting evidence. • the conduct of legal capacity evaluations. and legal considerations). this evidence now exists. patient and family education and support. The first drug approved by the U. and are labeled as such. Although some of these treatment methods were already in use. and it is discussed in the current revision. few were supported by evidence of efficacy from well-designed clinical trials. As with the previous versions. and the online version of the report contains links to many of these resources.S. followed by the care recommendations and a review of the literature supporting them. with appendices containing copies of many of the assessment instruments and forms cited in the text. either “strong” (e. A notable advance in pharmacological treatment of Alzheimer’s Disease was the introduction of memantine (Namenda) in October 2003.” In some instances. additional emphasis on other topics relevant to the treatment of Alzheimer’s Disease. and • the special needs of early-stage and late-stage patients and their families The revised report includes much new material regarding these critically important subjects. treatment. Each section deals with one of the four care issues and provides an overview of the issue. along with the needs of patients and their families. as well as numerous non-pharmacological interventions designed to improve disease management and quality of life for both Alzheimer’s Disease patients and their caregivers. memantine has become an important component of treatment for many patients.. has become apparent. The revised and expanded report has been organized to conform to this layout.

taBle oF ContentS page page page page page page 7 9 19 37 45 49 Guideline Recommendations assessment treatment patient and Family education and Support legal Considerations References appendices .

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culture. sexual. literacy level. Identify Culture & Values identify the patient’s and family’s culture.caregiver. psychotic symptoms. to treat cognitive decline • Referral to early-stage groups or adult day services for appropriate structured activities. including the alzheimer’s association. neglect. Involve Early-Stage Patients Pay particular attention to the special needs of early-stage patients. Discuss Stages Discuss the patient’s need to make care choices at all stages of the disease through the use of advance directives and identification of surrogates for medical and legal decision-making. such as environmental modification. abandonment. treatment choices. • Referral to social service agencies or support organizations. appropriate activities. progression. Assess Capacity assess the patient’s decision-making capacity and determine whether a surrogate has been identified. abduction) to adult Protective services. values. educational level. toileting. support groups. Discuss End-of-Life Decisions Discuss the intensity of care and other end-of-life care decisions with the alzheimer’s Disease patient and involved family members while respecting their cultural preferences. and goals of alzheimer’s Disease care with the patient and family in a manner consistent with their values. heeding their opinions and wishes. THEN use medications. mobility. and other medications. NMDA antagonist. Discuss with patient and family: • Use of cholinesterase inhibitors. care needs. safety. function.alz. Organizations include: • Alzheimer’s Association (800) 272-3900 www. paying particular attention to the caregiver’s own mental and physical health. consultation on care needs and options. Driving report the diagnosis of alzheimer’s Disease in accordance with California law. targeted to specific behaviors. California Version © april 2008 . long Term Care ombudsman. both prescription and non-prescription (at every visit) • Living arrangement. and decision-making process. and abuse and/or neglect • Need for palliative and/or end-of-life care planning ASSESSMEnt Reassess Frequently reassessment should occur at least every 6 months. respite care. continence. and depression • Medications. and financial resources. as required by law. legal counseling. LEGAL conSiDErAtionS Planning include a discussion of the importance of basic legal and financial planning as part of the treatment plan as soon as possible after the diagnosis of alzheimer’s Disease. preferences. isolation. Provide End-of-Life Care Provide appropriate end-of-life care. Treat Co-Morbid Conditions Provide appropriate treatment for comorbid medical conditions. including feeding. and ability to manage finances and medications • Cognitive status using a reliable and valid instrument • Comorbid medical conditions which may present with sudden worsening in cognition. and the patient’s abilities. Integrate Medical Care & Support integrate medical care with education and support by connecting patient and caregiver to support organizations for linguistically and culturally appropriate educational materials and referrals to community resources.Guideline for Alzheimer’s Disease Management Monitor Changes Conduct and document an assessment and monitor changes in: • Daily functioning. being aware of the relevant criteria for particular kinds of decisions. if clinically indicated. etc. bathing. task simplification. involving them in care planning. or as change in behavior • Behavioral symptoms. and sudden changes in behavior or increase in the rate of decline should trigger an urgent visit to the PCP. Identify Support identify the primary caregiver and assess the adequacy of family and other support systems. Elder Abuse Monitor for evidence of and report all suspicions of abuse (physical. dressing. primary language. if clinically indicated.org • or your own social service department EDucAtion& Support EDucAtion & Support pAtiEnt & FAMiLy Discuss Diagnosis & Treatment Discuss the diagnosis. Develop Treatment Plan Develop and implement an ongoing treatment plan with defined goals. Capacity Evaluations Use a structured approach to the assessment of patient capacity. including the Alzheimer’s Association’s MedicAlert® + Safe Return® program for patients who may wander trEAtMEnt Non-Pharmacological Treatment First IF non-pharmacological approaches prove unsuccessful. or the local police department.org • Caregiver Resource Centers (800) 445-8106 www. and referring them to community resources. such as physical exercise and recreation Treat Behavioral Symptoms Treat behavioral symptoms and mood disorders using: • Non-pharmacologic approaches. note that side effects may be serious and significant. financial. including palliative care as needed.

The first was disseminated in 1998 and updated in 2002. Early-Stage Recommendations Patients in early-stage aD have unique concerns. The number of those afflicted is increasing annually as the population continues to age. This is the third edition of this Guideline for Alzheimer’s Disease Management. and other safety issues with the patient. involving them in care planning and referring them to community resources. providing more in-depth background information.Guideline for Alzheimer’s Disease Management Alzheimer’s Disease and Its Impact alzheimer’s Disease (aD) currently afflicts over 5. The California Workgroup on Guidelines for Alzheimer’s Disease Management. prevalence will escalate rapidly and is expected to double by 2020. many of the activities recommended in the Guideline do not require a physician and can be done by other members of the treatment team (care managers. it assumes that a proper diagnosis has been made using reliable and valid diagnostic techniques.caalz. an expanded companion document. academicians and representatives of professional and volunteer organizations. cognitive stimulation and psychosocial support. nurses. will depend upon previously discussed care plan and the severity of the dementia. Late Stage and End-of-Life Recommendations Prepared by the California Workgroup on Guidelines for alzheimer’s Disease Management april 2008 as the patient’s dementia worsens and the ability to understand treatments and participate in medical decision-making declines. Predicting the end-of-life for a patient with severe aD is difficult. initiate pharmacologic therapy early. Pay particular attention to the special needs of early-stage patients. Discuss implications with respect to work. and invasive procedures. which consists of healthcare providers. The recommended activities do not have to be done in one visit. follow up two months after diagnosis and every six months thereafter.000 patients under the age of 65. developed the Guideline through a review of scientific evidence supplemented by expert opinion when research has been unavailable or inconsistent.org. California Version © april 2008 . aD may progress slowly in the early stage. assist with independence. following the aging of the baby boomers. community support organizations) working closely with the patient and caregiving family. However. consumers. referral to hospice should be considered. and maintain cognitive health including physical exercise. The burden on families and the health care system will be substantial as one out of every eight baby boomers develops this disease. is available through the alzheimer’s association’s California website www. driving. hospitalization. in the current version there are four substantive changes: • The advent of a new class of medication (NMDA Antagonists) for the management of moderate to advanced AD • Support for a team approach (medical and social support strategies) to quality management of AD • Strong evidence linking positive patient outcomes to caregiver education and support • New evidence on management of the disease in the very early and end stages (see the recommendations below) About the Guideline This Guideline presents core care recommendations for the management of alzheimer’s Disease. recommend interventions to protect and promote continuing functioning. The main audience for the Guideline is primary care practitioners. including artificial nutrition and hydration. care shifts to focus on the relief of discomfort. including an estimated 200. The advisability of routine screening tests.2 million americans.

1986. The initial assessment of functional abilities is important to determine a baseline to which future functional deficits may be compared. Assessment: Cognitive Status Cognitive status should be reassessed periodically to identify sudden changes. Cash. 2007. • Living arrangement. and socioeconomic domains. Katz. Recommendation: Conduct and document an assessment and monitor changes in daily functioning. and toileting (Kane et al. The cognitive changes commonly associated with Alzheimer’s Disease first impact both the instrumental and eventually. bathing. Pavlik. • Cognitive status using a reliable and valid instrument..GuiDeline for AlzheiMer’s DiseAse MAnAGeMent aSSeSSMent Overview ppropriate treatment goals and plans that meet all of the patient’s needs can only be developed through comprehensive assessment of the patient. continence. both prescription and non-prescription (at every visit). Darby. or as change in behavior. 1996. and the home environment. reliable (with less variability between different assessors). mobility. 2005. 1997). specific medications. and ability to manage finances and medications. Ouslander. such as shopping. function. and identify the primary caregiver who. including feeding. including feeding. & Siegfried. Monllau et al. paying particular attention to the caregiver’s own mental and physical health. Park. the family.. & McHugh. Ashworth. dressing. bathing. Byrni. • Behavioral symptoms. ensure safety. & Abrass. Assessment: Daily Functioning Careful and competent functional assessment enables the PCP and family to determine how best to maximize patients’ independence (Ensberg & Gerstenlauer. Rountree. and depression. 1994. objective instrument that is relatively easy to use. • Identify the patient’s and family’s culture. and managing finances and medications. Hughes. Wilcock. cognitive status. Kane. 1970) indices (see Appendix A) can provide information on the patient’s capacity for selfcare and independent living. and ability to manage finances and medications. 2000). and behavioral symptoms. 1975) has become the most commonly used tool for cognitive assessment. It will also provide realistic goal setting and treatment planning information and allow early supportive interventions to be initiated (Ham. cooking. A number of brief assessment instruments have been developed. Grigoletto. Bucks. functional status. Standardized assessment instruments such as the Barthel (Mahoney & Barthel. & Doody. and sudden changes in behavior or increase in the rate of decline should trigger an urgent visit to the PCP . including possible psychotic symptoms and depression. enabling PCPs to adopt instruments that are appropriate to their practices and patient populations. & Wilcock. and decisionmaking process. mobility. • Assess the patient’s decision-making capacity and determine whether a surrogate has been identified. Down. and valid (results that would be similar to gold-standard evaluations). Physical functioning may focus on basic activities of daily living (ADLs) that include feeding. Functional assessment includes evaluation of physical. The assessment should also address the patient’s support system and decision-making capacity. dressing. 1965) or Katz (Katz. A Recommendations • Conduct and document an assessment and monitor changes in: • Daily functioning. • Medications. the basic activities of daily living (Fitz & Teri. Proxies or patient surrogates can complete a number of these instruments when necessary (Bucks. safety. and abuse and/or neglect. it has been criticized for the influence of education and language on an individual’s performance (Escobar et al. • Identify the primary caregiver and assess the adequacy of family and other support systems. primary language. psychological. as well as to monitor the potential beneficial or harmful effects of environmental changes. psychotic symptoms. 2007). Folstein. This assessment should address the patient’s comorbid medical conditions. Proper assessment requires the use of a standardized. in addition to other family members. toileting. bathing. & Grotz. CaliFornia VerSion © april 2008 9 . is a critically important source of information. care needs. mobility. continence. 1983). • Need for palliative and/or end-of-life care planning • Reassessment should occur at least every 6 months. Holmes & Adler. Wilson. and minimize caregiver stress. The Mini-Mental State Exam (MMSE) (Folstein. Assessment of a patient’s living environment can identify environmental supports that may be needed to maximize function. However. dressing. • Comorbid medical conditions which may present with sudden worsening in cognition.. literacy level. 1994). The Primary Care Practitioner (PCP) should solicit and consider caregiver and family input in post-diagnostic treatment planning. 2005. Assessment of instrumental (or intermediate) activities of daily living (IADLs) addresses more advanced self-care activities. or other interventions. toileting. values.

2007). osteoarthritis. (b) MiniCog (Borson. 2005). attention. 10 minutes Maximum Score = 30 12 items. Tagalog. & Dokmak. time required Maximum score 6 items. abstraction and judgment Visuospatial. 1994). the MMSE is a proprietary instrument. naming. 10 minute Maximum Score = 30 11 items. 3 minutes Maximum Score = 28 25 items. & Lebowitz. short-term memory. This will assist the PCP in determining whether there is an acute medical condition in addition to Alzheimer’s Disease. orientation.g. repetition. Assessment: Comorbid Medical Conditions Approximately one-fourth of people with Alzheimer’s Disease also have other chronic illnesses such as heart failure. repetition. Chibnall. language. 1968). Mungas. Scanlan. and the use of other health and social service professionals (psychologists. 1997. writing. 1996). Mulgrew et al. or care managers) or an interdisciplinary care team is critical to determine the extent of appropriate care and to develop the therapeutic plan. verbal fluency. attention. naming. social workers. attention and calculation.15-20 minutes Maximum Score = 100 2 items. visual construction. Leon. Expected annual rates of cognitive decline and the influence of education and language on respondent scores vary among cognitive screening tests. MoCA.) All of these instruments have been validated and some are available in languages other than English (e. Kertesz. short term recall (note: includes clock drawing) orientation. The PCP should diagnose comorbid diseases and treat them promptly and efficiently (Doraiswamy.. 2006. 1999. & Newmann. & Morley. Blair. 1997). The PCP should request Table A1: Brief Cognitive Assessment Instruments name of instrument BOMC (Blessed orientation-Memory-Concentration test) CASI (Cognitive assessment Screening instrument) MiniCOG MMSE (Mini-Mental State exam) MoCA (Montreal Cognitive assessment) SLUMS (St. and SLUMS are included in Appendix B. & Roth. Cantonese). Alternatives useful for clinical practice include: (a) Blessed Orientation-Memory-Concentration Test (BOMC. the Blessed Test. for differentiating cognitive deficits of Alzheimer’s Disease from other dementias as well as deficits associated with other neurological and psychological disorders (Cammermeyer & Prendergast. or BIMC) (Blessed. 2002. which may declare itself with a change in behavior. 2006). 3 minutes Maximum Score = 5 19 items. Spanish. Culture. Recommendation: Conduct and document an assessment and monitor changes in cognitive status using a reliable and valid instrument. executive functioning. executive function (note: includes clock drawing) 10 CaliFornia VerSion © april 2008 .. & Denman. The involvement of family members and other caregivers in gathering a history and completing an evaluation to identify co-morbid medical conditions is essential. Moreover.. short-term verbal recall. naming. word list fluency. verbal recall. concentration. but one must be vigilant for the presence of new medical conditions such as thyroid disease (which may present as weight loss or gain) and known medical conditions such as poorly compensated heart failure. Tomlinson. Fisk. short-term verbal recall attention. Cummings. Ritchie. Assessment of the patient’s medical condition should include obtaining information about the person through structured patient and caregiver interviews (American Psychiatric Association. Perry. calculation. Anderson. 2007). also called Blessed Information-Memory-Concentration Test. 1997). visuospatial Visuospatial/executive functioning. Ham. registration. abstraction. The family is an excellent source of information regarding a patient’s baseline level of functioning. and Literacy” later in this section for a more detailed discussion of this issue. Louis University Mental Status Examination (SLUMS) (Tariq. (see Table A1 below. short-term verbal recall. particularly in the early stages of dementia (Jacova. 3-step command. The added cost of administration may lead to the increasing familiarity and use of other cognitive screening instruments. 7 minutes Maximum Score = 30 Cognitive functions Assessed orientation. louis University Mental Status examination) number of items. (d) Cognitive Assessment Screening Instrument (CASI) (Teng et al. & Feldman. (See “Language.. It is tempting to attribute changes in function to the dementing illness. Selstad. Griffith et al.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Zappala. 2002). Tumosa. Brush. and (e) St. Mini-Cog. orientation (note: includes clock drawing) orientation. 2000). the PCP needs to consider the effect that literacy level and language may have on cognitive screening test scores. 1999. Regardless of the instrument used. Vitaliano. reading. (c) Montreal Cognitive Assessment (MoCA) (Nasreddine et al. mental manipulation. long-term memory. and/ or diabetes (Maslow.) Neuropsychological testing is also helpful. chronic obstructive pulmonary disease. Marin.

Standardized tools can be used by PCPs or clinic staff to gather information on behavioral symptoms from the caregiver and evaluate effectiveness of interventions over time. Delirium in patients with Alzheimer’s Disease may present with agitation or other behavior changes. It is important to monitor for signs and symptoms that may indicate the presence of other comorbid disease states. (b) Neuropsychiatric Inventory Questionnaire (NPI-Q) (Cummings et al. careful evaluation and management may delay the need for institutionalization (Mittelman. and often precipitate institutionalization.). and cardiopulmonary disease. Kaufer et al. The patient should be examined for new medical problems. Friedman & Newburger. agitation. 1987). this should trigger a nutritional assessment. Harwood. 2005. 1992). & Haley. McIlroy.. Psychotic Symptoms. as well as the result of dementia-related disruption of the normal sleep-wake cycle. 2007). For example. Once these potential issues are addressed. A generic symptom such as excess drowsiness may be an indicator of medication effect or infection. 2007. & Vellas. 2006). Patients and families will present to their PCPs with a range of behavioral symptoms that often fluctuate over time and there is a wide range of abilities to tolerate or cope with these behaviors. Vellas et al. Coon. It is an urgent medical condition because it is often a sign of a serious underlying medical illness. appropriate. Dendukuri. 2005) found a prevalence of approximately 41% in Alzheimer’s Disease patients. and (e) Ryden Aggression Scale (Ryden. Agitation and aggression have been shown to be associated with pain in patients with dementia (Howard et al. Cole. Evidence suggests an increased prevalence of psychotic symptoms as the disease progresses (Ropacki & Jeste).. Steffens. Ownby. Roth. 1986. Reisberg et al. 2007) (see Treatment section). infection. Hart. 2007. & Duara. These are usually brief and easy to administer and include the (a) Revised Memory and Behavior Problem Checklist (RMBPC) (Teri et al. Delirium. including pain. Guigoz. if the caregiver reports anorexia or weight loss exceeding 2 kg or 5% of the person’s body weight over the past 3-6 months. These symptoms present the most challenging aspect of caregiving. Han. 2004). and incorporated into appropriate care plans. Although psychotic symptoms are less common than the behavioral disturbances discussed above. as well as strategies that are successful in modifying or curtailing these symptoms. Logsdon. 2001). 2004). McCurry. Clay. which may present with sudden worsening in cognition. 2001.. & Teri. behavioral. loss of functional capacity. 2006. or risk of harm to the patient or others (American Psychiatric Association. Salvà. which may worsen cognitive. & Roth. Helms. and individualized care goals and plans that should be re-evaluated regularly (AllenBurge. and a measurement of the plasma albumin are methods to assess the need for intervention. a recent meta-analysis of 55 studies published between 1990 and 2003 (Ropacki & Jeste. Delusions (especially paranoid-type) and CaliFornia VerSion © april 2008 11 .. 1994. a form for administering the RMBPC is provided in Appendix D. 1992). Mirakbur. & Anderson.. (c) Cohen-Mansfield Agitation Inventory (CMAI) (Cohen-Mansfield. 1999. however. Psychotic Symptoms. & Plassman. Lyketsos & Lee. 2003). or an acute confusional state. Behavioral symptoms become problematic when they are the cause of significant distress (for patient and/or caregiver). Maytan. 2000). Behavioral symptoms tend to cluster into four subsyndromes: hyperactive (agitated) behaviors. and duration of particular behaviors as well as caregiver stress and coping strategies. severity. and development of targeted support and educational strategies for caregivers. 1993. This will allow accurate identification of significant or dangerous behaviors and their triggers. appropriate prioritization of interventions. & Burgio.. 1986. The Mini Nutritional Assessment (MNA) (Belmin et al. The management of behavioral symptoms requires developing early. and Depression Behavioral Symptoms. More than 80% of Alzheimer’s Disease patients experience some form of behavioral symptoms such as anxiety. Reversible causes must be sought when a patient demonstrates rapid cognitive deterioration (Fillit et al. and apathy during the course of the disease (Craig. 2005. Caregivers may be able to assist at home by keeping a log of troubling behaviors that includes the times they occur. Barker. psychosis.. function. Harker. is more common in individuals diagnosed with Alzheimer’s Disease and other dementias than in non-demented older adults (McCusker. assessment should focus on the frequency. recorded in the patient’s record. 2006).. Cohen-Mansfield & Billig.. 2001) (see Appendix C). (d) Behavioral Pathology in Alzheimer’s Disease Rating Scale (BEHAVE-AD) (DeDeyn & Wirshing. or as change in behavior. 1999. Stevens. 1988). & Passmore. The PCP should be alert to such acute behavior changes as a trigger for further medical evaluation (Fillit et al.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent information from the caregiver about any other medical care received. Recommendation: Conduct and document an assessment and monitor changes in comorbid medical conditions. 2006). Haley. which is also available in a shortened form (Rubenstein. Lyons. Finkel. & Belzile. Sudden onset of behavioral symptoms requires evaluation for medical causes. Assessment: Behavioral Symptoms. medication effects. with delusions of theft predominating. or psychiatric behaviors associated with Alzheimer’s Disease. See Table A2 for more information. requiring comprehensive evaluation to identify the underlying cause so that prompt corrective action can be taken (McCusker et al. such as thyroid disorders and colon cancer. Mittelman. Attention must be given to current medications both prescribed and non-prescribed. as well as depression and medication adverse effects.. 2000). affective behaviors and apathy (Aalten et al. Boucher. Other medical conditions and medications should be identified.

suspiciousness. 2004). & Strauss. & Wypiy. allows clinical/ empirical assessment of potentially modifiable behavior problems Very detailed information on aggression Disadvantages Minimal assessment of disruptive behaviors only assesses agitation long version may be time-consuming to administer Dependent on caregiver’s reading and interpretation (as are all self-report measures) limited to aggressive behaviors revised Memory and Behavior Problem Checklist (rMBPC) ryden aggression Scale (raS) hallucinations are the most common form of psychotic symptoms in Alzheimer’s Disease (Jeste & Finkel. 2000). & Folstein. Chase. Koltra. increased caregiver depression and burden (GonzàlezSalvador. Chacko... Therefore. anxiety. is a brief. as depression affects as many as 50% of Alzheimer’s Disease patients living in the community (Lyketsos & Lee. & Doody. & Koff. 2005). 1999). the Columbia University Scale for Psychopathology in Alzheimer’s Disease. It is important for health care professionals to be sensitive to symptoms of affective disorders associated with Alzheimer’s Disease and to facilitate early intervention (Bolger. 1998. and further functional decline (Lyketsos & Lee.). mentioned above. 1996. reliable. 2000. 2000). and delusions may be found in a third of Alzheimer’s Disease patients with depression. but the resulting behavior manifests as depression (Vandeweerd. Depression. The Neuropsychiatric Inventory Questionnaire (NPIQ) (Cummings et al. Rosenberg et al. Devanand et al. many families may be unwilling to report these behaviors due to cultural norms that stigmatize dementia as shameful to the family (Valle.. 1997. and higher mortality (Bassuk. gathering data from family members becomes especially important (Jones & Reifler. and are of great concern because these symptoms are often linked to aggressive behaviors (Aarsland. Harper. 12 CaliFornia VerSion © april 2008 1999). Yeo & Gallagher-Thompson. 1997. it is important for the provider to consider depression in the differential diagnosis when these behavioral symptoms present (Zubenko et al. Becket. 2006). psychiatrist) is warranted if the presentation or history of depression is atypical or complex (Lyketsos & Lee). 2005).. Fear. 2006). & Miller. Paveza. 1995). Consultation with and/or referral to a specialist (e. Another assessment instrument.g. . which may wax and wane. severity of 12 behavioral symptoms as well as caregiver distress associated with symptoms rates frequency of 24 specific behaviors over past week and degree of distress to caregiver caused by each assessment of frequency of 25 aggressive behaviors Advantages includes psychotic symptoms Very detailed information about agitation Several versions. Cummings. Lyketsos. Mood symptoms. 1990). Gwyther. Major changes in the patient’s environment may trigger depression. 2003). may include irritability. but is not appropriate for assessing changes in severity of symptoms (Devanand. & Barba. Rovner. Berkman. and psychosis (Jeste & Finkel.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Table A2: Brief Behavioral Assessment Instruments name of instrument BeHaVe–aD Cohen-Mansfield agitation inventory (CMai) neuropsychiatric inventory Questionnaire (nPi-Q) Description assessment of 25 behavioral symptoms and a global rating rates frequency of 29 agitated behaviors on 7 point scale rates frequency.. Adverse outcomes related to depression include earlier nursing home placement (Steele. 1995) and patients may be unable to describe their symptoms to the PCP. apathy. Gilley. 1998). Wilson. informant-based assessment of neuropsychiatric symptoms and associated caregiver distress and is appropriate for use in a general clinical practice (Kaufer et al. Carpenter. Effective diagnosis and treatment of depression in Alzheimer’s Disease requires awareness of the relationship between the patient’s depression. however. 2004). Mintzer & Targum. can adapt to setting/time limits. and cognition.. Symptoms of depression in Alzheimer’s Disease may overlap with symptoms of delirium. Yenner. One potential trigger is elder abuse in which the patient cannot verbally articulate the details of the abuse.. Psychotic behaviors reported by family or other caregivers should be documented in the patient’s medical record. & Fulmer. 2003). 1994. greater physical aggression towards caregivers (Lyketsos et al. A decline in function but not in cognition usually precedes the first episode of depression (Holtzer et al. is brief and effective in assessing psychotic symptoms.. Arango. 1994. Kaufer et al. 1992). function. Since administering assessment tests for depression to Alzheimer’s Disease patients is often challenging (Warshaw. provides information about caregiver stress Self-administered caregiver-report tool requires less than 10 minutes to complete. but the patient may be unable to articulate the disturbance due to cognitive loss. & Evans. Phillips. 1994).

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As Alzheimer’s Disease progresses, collateral information from the caregiver becomes essential to diagnose, treat and track the course of patients’ depressive symptoms, and to monitor patients’ suicidal potential. The Cornell Scale for Depression in Dementia (Alexopoulos, n.d ; Alexopoulos, Abrams, Young, & Shamoian, 1988.) is a useful tool for providers because it captures both patient and caregiver input (see Appendix E). Recommendation: Conduct and document an assessment and monitor changes in behavioral symptoms, psychotic symptoms, or depression. Assessment: Medications Medications that are improperly prescribed or administered are a significant source of morbidity and mortality in older adults (Budnitz, Shehab, Kegler, & Richards, 2007; Gallagher, Barry, Ryan, Hartigan, & O’Mahony, 2008). It is thus important for the PCP to ask who is monitoring the medication usage, who has access to medications, and who makes decisions about “prn” (as needed) medications. All medications used by the patient, both prescription and nonprescription (including herbals, supplements, and over-thecounter) should be brought to the medical office on every visit. This allows the PCP to do a review with the following six key issues in mind: 1. Is this medication achieving its intended effect? 2. Is this medication causing an adverse effect that is annoying or severe enough to warrant discontinuation? 3. Is this medication interacting with other medications in a dangerous way? 4. Is this medication still necessary? 5. Can the dose of the medication be decreased? 6. Can use of this medication be safely discontinued? The use of certain classes of medications should be avoided in patients with Alzheimer’s Disease. Those that cause increased confusion, such as sedative-hypnotics and barbiturates, should be avoided, as should anticholinergics, particularly in those patients prescribed an acetylcholinesterase inhibitor agent (Fick et al., 2003; Gill et al., 2005). A thorough assessment will determine whether any of these medications has been prescribed for the patient, and if so, whether the risks associated with their use may outweigh their benefits. Recommendation: Conduct and document an assessment and monitor changes in medications, both prescription and non-prescription (at every visit). Assessment: Living Arrangements, Safety, Care Needs, Abuse, and Neglect Assessment of a patient’s living environment may help identify retained abilities and things the individual is able to do within a familiar setting. It can also aid in identifying environmental supports that may be needed to maximize function, ensure safety, and minimize caregiver stress.

Safety issues such as driving, fall risk, medication management, environmental hazards, wandering, and access to firearms need to be discussed periodically with the patient and caregiver. Safety concerns typically focus on three risks in particular: falling (the leading cause of injury deaths, nonfatal injuries, and hospital admissions for trauma among older adults) (Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, 2006), wandering, and driving (Maslow et al., 2002). A home safety evaluation is an ideal way to accomplish this. Use of a safety checklist (see Appendix F) can assist the patient, family, and PCP in identification of potential safety hazards. There is a tension between the patient’s right to autonomy and the caregiver’s duty to protect. The PCP should assess and assist with the need for balancing these concerns with respect to such decisions as determining the time to stop driving. People with early Alzheimer’s Disease may be at risk and put others at risk if they continue to drive (Uc, Rizzo, Anderson, Shi, & Dawson, 2004). California law (California Health & Safety Code §103900; California Code of Regulations, Title 17 §§2800-2812) mandates that the PCP report the diagnosis of Alzheimer’s Disease, which triggers evaluation of the patient’s driving ability by the Department of Motor Vehicles (see Legal Considerations section and Appendix G). Abuse and Neglect. Another California law (Welfare and Institutions Code §15610.17) requires that any healthcare provider who has a reasonable suspicion of elder abuse must make a report to local law enforcement authorities (see Legal Considerations section and Appendix G). Abuse can go both ways: the patient may be abusive toward the caregiver, or the caregiver may be abusive toward the patient (Coyne, Reichman, & Berbig, 1993; Paveza et al., 1992). With respect to the patient, simple questions such as: “Are you afraid of anyone? Is anyone stealing from you? Has anyone hurt you?” are easy ways to screen for abuse (Aravanis et al., 1993). Depression (Vandeweerd et al., 2006), behavioral symptoms including social isolation and withdrawal, and physical signs such as dehydration, broken bones and bruises, or poor basic and oral hygiene (Joshi & Flaherty, 2005; Shugarman, Fries, Wolf, & Morris, 2003) may be signs that an Alzheimer’s Disease patient has been the victim of abuse or neglect. See Table A3 for characteristics of caregivers and their elderly dependents that have been identified as risk factors for abuse of care recipients by their caregivers (Reay & Browne, 2002). In addition, the most important care recipient characteristics to look for in assessing for potential abuse are: • Problems with short-term memory; • Psychiatric diagnosis; • Alcohol abuse; • Difficulty interacting with others; • Self-reported conflict with family members and friends;
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• Feelings of loneliness; and • Inadequate or unreliable support system (Shugarman et al., 2003). It is recommended that patients exhibiting three of the seven predictors of potential abuse be targeted for further investigation, although fewer “triggers” also may signal a strong need for preventive measures such as additional support services (Shugarman et al.). Because timely referrals to support services may help mitigate or eliminate circumstances associated with abuse and neglect (see Treatment section and Patient and Family Education and Support section), thorough assessment and monitoring by the PCP is essential to the safety of both patient and caregiver. Recommendation: Conduct and document an assessment and monitor changes in living arrangements, safety, care needs, and abuse and/or neglect. Assessment: Palliative and End-of-life Care As patients progress from mild to moderate and eventually severe Alzheimer’s Disease, the goals of assessment often change, as do the goals of treatment. Palliative care requires individualizing a patient’s care plan to reflect needs that may differ substantially from that of an otherwise healthy individual. The American College of Physicians recently recommended that PCPs assess patients regularly for pain, dyspnea, and depression (Qaseem et al., 2008). Because patients with severe dementia are likely to be unable to communicate verbally, assessment of symptoms in late-stage Alzheimer’s Disease may be especially difficult (Aminoff & Adunsky, 2006) and requires careful attention to nonverbal cues. Several pain assessment instruments are available for this purpose (van Herk, van Dijk, Baar, Tibboel, & de Wit, 2007). Although predicting the end of life for a patient with severe Alzheimer’s Disease is difficult, obtaining hospice care

requires a prognosis of mortality within six months (Mitchell et al., 2004), and instruments have been developed for this purpose (e.g., Mini Suffering State Examination [Aminoff, Purits, Noy, & Adunsky, 2004]). Factors likely to herald a poor outcome include dependence on others for all activities of daily living, weight loss, recurrent infections, loss of mobility, multiple pressure ulcers, and recent hip fracture (Sachs, Shega, & Cox-Haylet, 2004), as well as cardiovascular disease, diabetes mellitus, need for oxygen therapy, and excessive sleep (Mitchell et al.). Under these circumstances, referral to hospice should be considered (Aminoff & Adunsky, 2006). Recommendation: Conduct and document an assessment and monitor changes in the need for palliative and/or end-of-life care planning. Assessment: Regular Reassessments Longitudinal monitoring of disease progression and therapy, along with regular health maintenance checkups, are considered essential (American Psychiatric Association, 2007; Hogan et al., 2007). Ongoing primary care should include medication review, treatment and monitoring of other medical conditions, treatment of dementia by available medications if appropriate, monitoring of disease progression, referral to specialists as needed, and referral to clinical drug trials and other research studies when appropriate. (General information regarding clinical trials, including the benefits and risks of participating in them, is available on the Internet at http://www.nihseniorhealth.gov, and information about planned and ongoing clinical trials may be found at http:// www.clinicaltrials.gov.) Workgroup consensus suggests reassessments should be conducted using the same instruments in order to effectively monitor changes and progression of the disease over time. Frequency of visits will be determined by a number of factors including the patient’s clinical status, likely rate of

Table A3: Risk Factors for Abuse of Elderly Care Recipients
Caregiver Characteristics responsibility for dependent over 75 years of age lives constantly with dependent inexperienced or unwilling to provide care Has overly high expectations of dependent acts hostile, threatening, and/or aggressive Has other care demands (e.g., spouse, children) is subject to high external stressors isolation and lack of community support History of mental health problems (esp. clinical depression or anxiety) Poor physical health History of alcohol or drug abuse History of childhood abuse or neglect or family violence Care recipient Characteristics Physical or mental dependence on caregiver Poor communication abilities Demanding and/or aggressive Has abused caregiver in the past Shows potentially provocative behavior lives constantly with caregiver Has history of hospitalization, esp. falls is reluctant or unlikely to report abuse Becomes submissive, withdrawn, or depressed in presence of abuser

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change, current treatment plan, need for any specific monitoring of treatment effects, and reliability and skill of the patient’s caregivers (American Psychiatric Association, 2007). Workgroup consensus is that patients with Alzheimer’s Disease should be seen at least every six months for reassessment, unless changes in function or behavior, or other intervening conditions warrant more frequent medical contact. Any sudden change or decline in cognition, function, or behavior requires prompt medical evaluation, as this may indicate the presence of an acute medical problem (e.g., delirium) that requires treatment. More frequent visits (once or twice a week) may be required in the short term for patients with complex or potentially dangerous symptoms, or during administration of specific therapies (American Psychiatric Association). Regular appointments allow the PCP to monitor the patient’s cognitive and functional status, as well as the development and evolution of cognitive and behavioral symptoms of Alzheimer’s Disease and their response to intervention. They also provide a forum for health promotion and maintenance activities (Dunkin & Anderson-Hanley, 1998) and an opportunity to assess how well the caregiver is managing. Recommendation: Reassessment should occur at least every 6 months, and sudden changes in behavior or increase in the rate of decline should trigger an urgent visit to the PCP. Assessment: Primary Caregiver and Support System Strong evidence suggests that assessment of the caregiver should include the following elements: knowledge base (e.g., expectations of treatment outcomes and local services), social support (both availability and perceived adequacy), psychiatric symptomatology and burden (e.g., depression, anxiety), family conflict (quality of the relationship, elder abuse) (Dunkin & Anderson-Hanley, 1998), and ethnic and cultural issues (e.g., primary language and acculturation). PCPs need to be vigilant with respect to the health of the primary caregiver as well as that of the patient with Alzheimer’s Disease, whether or not the caregiver is their patient. A brief self-assessment tool for caregivers is available on the website of the American Medical Association (2008), and a copy is included as Appendix H. Establishing and maintaining alliances with caregivers is critical for care of the Alzheimer’s Disease patient (Bultman & Svarstad, 2000; Family Caregiver Alliance, 2006). Major physician organizations have emphasized the importance of family caregivers by calling on PCPs to form partnerships with families who care for dementia patients (e.g., American Academy of Neurology [Lyketsos et al., 2006], American Association for Geriatric Psychiatry [Doody et al., 2001], American Psychiatric Association [2007]). Family caregivers are central to the PCP’s assessment and care of the patient with Alzheimer’s Disease (Family Caregiver Alliance; National Institute for Health and Clinical Excellence & Social Care Institute for Excellence [NICE-SCIE], 2006). The PCP

must rely on family members to report relevant information (Doody et al.). Therefore, the PCP should routinely solicit and incorporate family and other caregivers’ reports of patients’ changes in daily routine, mood, behavior, sleep patterns, weight gain or loss, and gait and mobility. For patients with moderate to severe Alzheimer’s Disease, the real managers of care are family members who implement and monitor treatment (Barrett, Haley, & Powers, 1996; Friss, 1993). The PCP should make sure that the caregiver’s contact information is noted and kept up to date in the patient demographics section of the patient’s medical record. It is important to note that the individual bringing the patient into the office may not be the primary caregiver. Identification of the primary caregiver of the Alzheimer’s Disease patient may be challenging in certain cultures where more than one person may be expected to perform that function (see “Language, Culture, and Literacy” later in this section). Assessment of the caregiver may occur on two levels: as the provider of care to the Alzheimer’s Disease patient, and as a patient him/herself (Family Caregiver Alliance, 2006). Family caregivers face increased risk of serious illness (including circulatory and heart conditions and respiratory disease and hypertension), increased physician visits and use of prescription medications, emotional strain, anxiety, and depression (Bullock, 2004). There is moderate evidence that caregiver strain is an independent contributor to mortality, particularly among elderly spousal caregivers (Schulz & Beach, 1999). The risk of depression is particularly high, with prevalence rates of self-reported depression among community-dwelling caregivers of Alzheimer’s Disease patients ranging from 30% to as high as 83% (Eisdorfer et al., 2003). Thus, caregiver assessment should seek to identify any psychological distress as well as the psychological impact upon the caregiver with respect to changes in the cognitive status or behavior of the Alzheimer’s Disease patient receiving care. Signs of caregiver stress may include the following: • Self-reported stress; • Increased dependency on alcohol or other drugs; • Reported weight gain or loss; and • Sleep disturbance. Caregivers should continue to be assessed even if the decision for long-term placement (e.g., nursing home) has been made because there is strong evidence that many caregivers continue to provide care after placement, and the effects of caregiver strain and burden may still be present (Family Caregiver Alliance, 2006; Gwyther, 2001; Maas et al., 2004; NICE-SCIE, 2006). See Table A4 (Family Caregiver Alliance, 2006) and the Patient and Caregiver Education and Support section for more information on caregiver assessment. Recommendation: Identify the primary caregiver and assess the adequacy of family and other support systems, paying particular attention to the caregiver’s own mental and physical health.
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2000. as determined by objective testing. PCPs need to tap into underlying belief systems regarding Alzheimer’s Disease and other comorbid conditions. rather than a decision about whether or not to have cardiac surgery. Can the patient make and express personal preferences at all? 2. 2008. & Feudtner. Casarett. Research has shown that even indi16 CaliFornia VerSion © april 2008 viduals with mild to moderate Alzheimer’s Disease may retain the capacity to make some treatment decisions. Moye et al. reflect culturally competent practice. 2002). 2005. choice. for example. Kim & Appelbaum. 2000) (see Legal Considerations section). 2005. Zgola. Culture. Blustein. this capacity will diminish and eventually be lost. with more complex decisions requiring higher cognitive function than simpler decisions (Karlawish. This underlying world view and accompanying normative expectations are often expressed in terms of “folk understandings” which may influence the way in which people . who may not be the person doing most of the “hands-on” caregiving (Valle. In ethnically diverse populations. James. and no one case reflects the total primary culture to which the patient belongs. 2007). Moreover. acculturation factors are ever present.. 2007). 2006). Post. which may determine service linkage and adherence outcomes (Folsom et al. & Kim. Gerrity. Moreover. even in ostensibly monocultural individuals or groups (Valle & Lee. & Dubler. Research indicates that a patient’s level of cognitive function. is indicative of ability for decision-making about medical treatment (Karlawish. 2002). Moye et al. & Blanchette. 2001). with greater differences within groups than between them. PCPs must ascertain as early as possible in the assessment process how a family makes decisions and identify its primary decision-maker. the PCP may be seen as the sole person in authority. The following questions may help guide clinical assessment of the critical decision-making abilities: understanding. Dilworth-Anderson & Gibson. First. Can the patient give reasons for the alternative selected? 3. and address their needs embrace a family-centered perspective. assess. 2000. Pietsch. respect. Cox & Monk. developed collaboratively with the caregiver. with the expectation that he or she will be making detailed caregiving decisions. and be updated periodically Assessment: Capacity Determination and Surrogate Identification “Capacity” refers to one’s ability to make decisions about specific actions. Can the patient comprehend the risks and benefits of the particular decision in question? 5. in a multicultural society such as that of the United States.. Does the patient comprehend the implications of the decision? In early-stage dementia. Capacity assessment is decision-specific. patients typically retain much of their decision-making capacity and their ability to appoint a surrogate (Braun.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Table A4: Fundamental Principles of Caregiver Assessment Caregiver assessment should: recognize. With that said. 2000. However. Some experts distinguish this from “competency. The patient who has the capacity to identify a surrogate should be encouraged to do so as soon as possible for the sake of improving the quality of care over the course of the illness (Braun et al. which can be a complex cognitive process. and Literacy It has long been recognized that cultural values and norms govern familial relationships and care of elderly people (Chui & Gatz. 2008. that identifies services to be provided and intended measurable outcomes Be multidimensional. Second. Third. and alternatives to a particular decision. 2007). 1999). Silveira. Potkins et al. For example. 2008. decisional capacity can change from day to day. inclusive of the needs and preferences of both the care recipient and the family caregiver result in a plan of care. and that the capacity to make each decision has to be specifically assessed each time the need arises (Karlawish. 2008): 1. Are supporting reasons rational? 4.. PCPs must be able to understand the patient’s and family’s customary ways of relating to others within their own group and with persons in authority. A key factor in capacity determination is an assessment of whether an individual can appreciate the risks. benefits. PCPs need to be sensitive to the preferred language of the patient and family. appreciation. Assessment: Language. Karlawish. bilingual families may have quite different service engagement outcomes than monolinguals. Thus. 1993. There are three main ingredients of a cultural assessment within the clinical evaluation process for Alzheimer’s Disease. 1999.. and reasoning (Karlawish. cultural groups are internally heterogeneous. The PCP should determine decision-making capacity at the initial assessment and should ask the patient and family whether a surrogate decision-maker has been identified by the patient. being aware that internal decision-making processes may vary both among and within different cultural groups. the PCP must be culturally competent for appropriate and most effective evaluation and treatment of Alzheimer’s Disease.. DiPiero. Recommendation: Assess the patient’s decision-making capacity and determine whether a surrogate has been identified. It is more likely that a cognitively impaired individual will be able to demonstrate capacity to understand and make the choice of a health care proxy.” which is typically used as a legal term. Xie. Determining capacity may be made more difficult and time-consuming if the patient has impaired ability to communicate. as the disease progresses.

Parker. & Levkoff. Low literacy may directly and negatively affect patient performance on assessment instruments and treatment follow-through.. With respect to Alzheimer’s Disease management. and develop one’s knowledge and potential. 2005... 2006). whether presented in written or verbal form. such as more pictorially presented materials. 1998. basic literacy means the ability not only to read and write. Therefore. appointment slips. 1999). reports of family members or other caregivers. How do members of the patient’s cultural group relate to each other. non-cultural elements may skew the PCP’s understanding of cultural factors influencing treatment outcomes (e. with the goal of using this information in patient care planning and treatment.S. 1997. learn about cultural taboos (e. 2002. Valle & Lee. Davis. but may be capable of an accurate application of subtraction in handling simple monetary transactions.. literacy level. 2001).g. CaliFornia VerSion © april 2008 17 . A person with little schooling may not know how to do the serial sevens on the MMSE. their expectations for treatment outcomes. bicultural health care providers as appropriate (Cherry. and how decisions are made in the family (Valle. other service providers. What is the patient’s and family’s preferred (i. direct observation by the PCP)? 5.. Assessment of health literacy is equally important.g. The PCP should consult with the primary caregiver to identify beliefs about health and aging. 2002). 2005). Williams. thus alternatives. determine the language or dialect spoken by the patient and the patient’s family. stereotyping)? Recommendation: Identify the patient’s and family’s culture. to those in authority (e. Health literacy is defined as the ability to understand medical terminology and instructions. Franz. Cognitive testing in Alzheimer’s Disease is especially sensitive to language and literacy level (Teng. as even literate persons may have trouble understanding medical language. 1997. Yeo. primary language. 2006). Baker. Health literacy is a major health-related problem (AMA. Caregiver health literacy is especially critical as patient care responsibilities shift from the patient to the caregiver with disease progression. the nature and extent of the support network surrounding the patient and the family.. values.. American Medical Association [AMA]. & Parker. 2005). Yeo & Gallagher-Thompson. 1999. patient self-report. may be administered to persons of both high and low education and are especially useful when working with ethnically diverse populations (Davis et al. According to the National Literacy Act of 1991 (20 U. Clark. Parker. PCPs and staff members). even when such forms are in the persons’ (or groups’) native language. and utilize bilingual. Teng & Manly. Basic Literacy. Health Literacy. Williams. Some experts suggest that patients be tested only on what they reasonably may be expected to know (Teng & Manly). the PCP may be able to assign a staff person to obtain information about the family’s beliefs regarding the cause of the illness. In some office settings. and other health-related materials. How “acculturated” are the patient and family? How well equipped are they to manage clinical and other service referrals that the PCP may suggest? 3. §1201). which are relatively unaffected by crosscultural bias and education level. but also to “compute and solve problems at levels of proficiency necessary to function on the job and in society to achieve one’s goals.g. Gazmararian et al. 2002. including prescription labels. direct eye contact). The following questions provide a framework for conducting the cultural assessment recommended in this section: 1. may need to be considered (Davis et al.e. The content may require a literacy level that is too high for the persons receiving it. Hinton. is there a bilingual person available to assist? 2.g. or to strangers? 4. What sources of cultural information are available to help the PCP make this assessment (e. & Nurss.C. assessment of health literacy should focus on both the patient (in the early stages) and the primary caregiver (in all disease stages).. and may also have an effect on caregivers and significant others involved in the situation (Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent from diverse cultures receive and act on the information and directions provided by the PCP (Henderson & Traphaghan. 2006) (see Table A1 in this section). What other. and decision-making process. The same concerns extend to printed information about Alzheimer’s Disease that may be provided to patients and their families.. Cognitive screening tools such as the Cognitive Abilities Screening Instrument (CASI) (Teng et al. PCPs should consider both culturally as well as literacy-appropriate assessment tools. most comfortable) language for communicating with the PCP? If not English. if basic literacy is not present. Williams.” PCPs should be aware that paper and pencil tests and forms may not work well with the diverse populations they treat. 1999) as it affects an individual’s ability to understand and care for his/her medical problem and may result in ineffective care due to inability to understand the PCP’s instructions (Baker. & Weiss. 1994).

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and dementia severity at daily doses of 6 to 12 mg. & Tsolaki. • IF non-pharmacological approaches prove unsuccessful. if clinically indicated. values. such as physical exercise and recreation. using an individualized approach to their needs. there are fewer side effects with transdermal administration (Winblad et al. 1999) or NMDA antagonist. A systematic review of trials of rivastigmine performed in 2000 (Birks. O Recommendations • Develop and implement an ongoing treatment plan with defined goals. and • Referral to early-stage groups or adult day services for appropriate structured activities. A meta-analysis of clinical trials lasting at least 6 months of all ChEIs other than tacrine (Birks. Oral and patch forms of rivastigmine are available. or severe dementia. & Banks. Branton. 2006) also found mild effects on cognitive function. as well as functional benefits of. given for up to 52 weeks. Discuss with patient and family: • Use of cholinesterase inhibitors. if clinically indicated. Iakovidou. or behavioral response to.. and behavior with all agents. temporary stabilization. & Holmes. and a study investigating the effect of ChEI treatment on the risk of nursing facility placement found a reduction of more than 20% at 25 months of treatment (Becker. • Treat behavioral symptoms and mood disorders using: • Non-pharmacologic approaches. An updated review (Birks & Harvey) came to the same conclusions and recommended additional research into dosing and administration in order to reduce the frequency and severity of adverse effects. in addition to monitoring of cognitive deficits. 2006). Several meta-analyses of both individual agents and the class as a whole have provided insight into the clinical effect of these agents. produced small but statistically significant benefits in cognition. Goals should be developed in consultation with the patient (if capable) and with the patient’s family. and general medical evaluations of the nature and cause of cognitive deficits and associated noncognitive symptoms. NMDA antagonist. including palliative care as needed. • Provide appropriate end-of-life care. 2006) found that patients who received at least 16 mg/day over 3-6 months of treatment had stabilized or improved cognition. Evidence of a beneficial response. neurological. Effective treatment requires development and implementation of a plan with defined goals for the patient. such as environmental modification. Widely used brief mental status tests are inadequate to measure the cognitive effects of ChEIs (Bowie. Note that side effects may be serious and significant. PCPs should counsel patients with Alzheimer’s Disease and their families about realistic expectations of treatment outcomes with these agents. A recent meta-analysis of galantamine treatment studies (Loy & Schneider. and/or mental status questionnaire. appropriate activities. task simplification. 2007). is essential. and • Referral to social service agencies or support organizations. and behavior. Andel. as well as from evidence of behavioral or functional changes (see Assessment section). to treat cognitive decline. moderate. and preferences. BeckBornholdt. The agents are approved for monotherapy as well as combination therapy to improve cognitive function or delay decline in patients with mild. activities of daily living.. and other medications. these agents. which are likely to be small (Kaduszkiewicz. 2000) demonstrated improvements in cognition. 2006) indicated that both 5 mg and 10 mg doses of donepezil. THEN use medications. including the Alzheimer’s Association’s MedicAlert® + Safe Return® program for patients who may wander. a substantial observation period of 6 to 12 months is required to assess changes in cognition and rate of cognitive decline. Management goals and interventions should be based on a solid alliance with the patient and family and on thorough psychiatric. activities of daily living. targeted to specific behaviors. and should be modified as the disease progresses. activities of daily living. Cholinesterase Inhibitors A large number of clinical trials have been conducted to evaluate the effect of ChEIs on the symptoms and course of Alzheimer’s Disease. & van den Bussche. Zimmermann. neuropsychological assessment. Early discussion of future care options with the patient and family will provide guidance to the Primary Care Practitioner (PCP) in modifying patient care goals over time in ways that is acceptable to patients with Alzheimer’s Disease and their family members. Grimley Evans. etc. • Provide appropriate treatment for comorbid medical conditions. caregiver report.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent tReatMent Overview ngoing regular medical management of general health (including other medical conditions and their prevention). or modification of deterioration following administration of a ChEI or NMDA antagonist can be gathered using a clinician’s global assessment. Treatment: Developing a Treatment Plan (Therapies for Cognition) There currently are three cholinesterase inhibitors (ChEIs) and one N-methyl-D-aspartate (NMDA) antagonist that are FDA-approved and actively marketed (see Table T1 and Table T3 in this section). Rohrer. A review of donepezil studies (Birks & Harvey. 2005). CaliFornia VerSion © april 2008 19 .

5 mg twice daily escalation: 3 mg twice daily after 4 weeks.6 mg/24 hour patch daily. For a total daily dose between 6-12 mg of oral rivastigmine switch to 9.5 mg/24 hour patch daily after 1 month When switching from oral to the patch: For a total daily dose of less than 6 mg oral rivastigmine switch to 4. Max: 24 mg/day Extended Release: note: razadyne er is once daily Start: 8 mg daily or 4 mg twice daily.razadyne er®) oral. at 4. FDa-approved for mild. approved for mild and moderate alzheimer’s Disease only Start: 1. and diarrhea (sometimes can be reduced when taken with food. nausea. and diarrhea (must be taken with food) More nausea and vomiting than with other Cheis anorexia Maybe less muscle cramping than with other Cheis-Bradycardia (rare at therapeutic doses) other side effects the same as other Cheis Starting dose is not therapeutic Cautions same as for donepezil and galantamine rivastigmine (exelon®) transdermal. or with a history of falls or syncope (may want to avoid or seek cardiac consult) Galantamine (razadyne®. approved for mild and moderate alzheimer’s Disease only Immediate Release: Start: 4 mg twice daily escalation: 8 mg twice daily after 4 weeks. May increase to 16 mg twice daily after an additional 4 weeks.6 mg/24 hour patch (first check medication adherence). reducing dose. Caution same as for donepezil and galantamine Table adapted from FDA approved package inserts 20 CaliFornia VerSion © april 2008 . escalation: 16 mg daily after 4 weeks or 8 mg twice daily after 4 weeks. approved for mild to moderate alzheimer’s Disease only Start: 4. May increase to 24 mg per day (32 mg per day not more effective in alzheimer’s Disease) Same as for donepezil Starting dose is not therapeutic. Moderate and Severe Alzheimer’s Disease Agent Donepezil hydrochloride (aricept®) oral. vomiting. and severe alzheimer’s Disease suggested dosage Start: 5 mg daily escalation: 10 mg daily after 4-6 weeks if tolerated side effects nausea. vomiting.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Table T1: Cholinesterase Inhibitors (for Treatment of Mild. May increase to 6 mg twice daily after an additional 4 weeks. May increase to 4.6 mg/24 hr patch same as with placebo other side effects the same as donepezil and galantamine Starting dose is not therapeutic. moderate. vomiting.5 mg/24 hour patch apply the first patch on the day following the last oral dose nausea.5 mg twice daily after an additional 4 weeks. Maximum dose 16 mg per day if renal impairment other cautions same as donepezil rivastigmine tartrate (exelon®) oral. or dividing the dose to twice daily) Muscle cramps Urinary incontinence Syncope Bradycardia (doses >10 mg/day) Fatigue Comments and Cautions 5 mg dose is effective Caution when using in people with cardiac conduction conditions such as symptomatic bradycardia. slower titration. escalation: 9.

Patients with bradycardia or bradyarrhythmias. but a review of three unpublished trials conducted in patients with mild to moderate Alzheimer’s Disease found no effect on behavior or activities of daily living and only a minimal effect on cognition (although agitation was slightly less likely to develop in patients receiving memantine) (McShane. placebo-controlled.4 and 5. 2006).2) Table adapted from FDA approved package inserts Table T4: Principles for Prescribing Memantine Prescribe as monotherapy or adjunct treatment Upon diagnosis of probable or possible alzheimer’s Disease (ninCDS/aDrDa criteria) Upon duration of alzheimer’s Disease symptoms for more than 6 months Table adapted from Hogan et al. and diarrhea are the most common adverse effects in patients treated with ChEIs.73 m2). after 6 months. 2007 evaluate after 2-4 weeks (for adverse effects) after 3-6 months (for effect on cognition and function) after 6 months. 2007 evaluate after 2-4 weeks (for adverse effects) after 3-6 months (for effect on cognition and function) after 6 months. the only available NMDA antagonist. daily dose should be reduced to 10 mg per day. then 10 mg twice daily reduce dose in people with renal impairment (see “Cautions and Comments”) Side Effects Headache Dizziness Sedation agitation Constipation Cautions and Comments Target dose of 5 mg BiD is recommended in patients with severe renal impairment (creatinine clearance of 5-29 ml/min based on the Cockroft-Gault equation) note: Merz (Germany) recommends that for patients with moderate renal impairment (creatinine clearance 40-60 ml/min/1. if indicated CaliFornia VerSion © april 2008 21 . 2006). and at least every 6 months thereafter (for effect on disease symptom progression) Discontinue Prior to surgery switch if poor tolerance if.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Table T2: Principles for Precribing ChEIs Prescribe as initial treatment Upon diagnosis of probable or possible alzheimer’s Disease (ninCDS/aDrDa criteria) Upon duration of alzheimer’s Disease symptoms for more than 6 months Table adapted from Hogan et al. vomiting. after 6 months.. there is continued deterioration at pre-treatment rate Co-Administer With memantine. Two recent studies investigating its effect in moderate to severe Alzheimer’s Disease reported a small effect on cognition. should be carefully assessed and monitored if treatment with ChEIs is being considered because they have elevated risk for syncope or dizziness (Birks. there is continued deterioration at pre-treatment rate Co-Administer With Cheis. NMDA Antagonist Few randomized. Cummings and associates (2006) noted improved behaviors in patients with moderate to severe Alzheimer’s Disease who were treated with memantine as an adjunct therapy to donepezil. and at least every 6 months thereafter (for effect on disease symptom progression) Discontinue Prior to surgery switch if poor tolerance if. no data are available for patients with severely reduced kidney function (see sections 4. activities of daily living. as a treatment for Alzheimer’s Disease. Areosa Sastre. especially if symptomatic. double-blind studies have been published investigating the effect of memantine. if indicated Nausea. and behavior at six months.. then 5 mg and 10 mg in separate doses for 1 week. & Minakaran. Table T3: Memantine (N-Methyl-D-Aspartate [NMDA] Receptor Antagonist) for Treatment of Moderate to Severe Alzheimer’s Disease oral Agent: Memantine (namenda®) Suggested Dosage Start: 5 mg daily for 1 week escalation: 5 mg twice daily for 1 week.

Kamberg. Yaffe. 1995. Hai. Li. caregivers of Alzheimer’s Disease patients using adult day services report (a) fewer difficult-to-manage care recipient behaviors and less time spent managing these symptoms (Gaugler et al. but more recent investigations have shown negative results (Tabet & Feldman. Vickrey et al. Aggarwal. A recent review of charts for 240 managed care patients aged 75 and over with dementia (Boise. therapy. and stress (Buettner. self-esteem. 2007. Availability of a knowledgeable care manager in the primary care setting can ease the burden on the PCP and ensure follow-through on the part of the family (Callahan et al. 1997) and delay institutionalization.g. affect. There is conflicting evidence whether dosages greater than 400 I. 2002). To successfully navigate the challenging and unpredictable course of Alzheimer’s Disease.. support. Such services range from legal and financial planning early in the disease to skilled nursing care and hospice at the end of life. Although early studies suggested that estrogen or hormone replacement therapy may delay the onset of Alzheimer’s Disease. Dassa.. Patients in the early stages of Alzheimer’s Disease may derive significant benefits from use of community-based services focusing on their needs. & Haimov. 2003). 2003a ). decrease behavioral symptoms. 2007a) found strong enough evidence in favor of such programs to support a recommendation that development of community-based early dementia programs be considered a “National Healthcare Priority.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Other Pharmacotherapeutic Agents There is insufficient evidence to recommend other pharmacological treatments for Alzheimer’s Disease patients in general. A recent review of the literature and consensus report on the needs of early-stage patients (Alzheimer’s Association.). 2007).). 2006.. previous use of adult day services may attenuate the cognitive decline associated with institutionalization (Wilson. Alzheimer’s Disease patients have access to activities which have been shown to benefit these individuals. 2006). and aid recall (Ziv. and individual decisions should be based on clear understanding of the probable benefits and risks of therapy and personal patient preferences. (c) fewer recreational restrictions and conflicts between caregiving and other responsibilities (e. Townsend. per day increase mortality risk and should be avoided (Miller et al. consequently. & Evans. 2000). and other medications. NMDA antagonist. 2005). Such activities include music therapy. McCann. worry.. particularly when started early (Zarit et al. less burden. 22 CaliFornia VerSion © april 2008 . & Kaye. if clinically indicated. Patients and their families should participate fully in the decision-making process. 2003) (using ibuprofen) as well as serious adverse effects (Tabet & Feldman.. anger. reminiscence. Neal. as detailed in Table T5 in this section. 2001). which can promote interpersonal connections (Kasl-Godley & Gatz. and psychosocial support for both individuals with memory loss and their family members. 2006). 2007). 2004. Treatment: Referral to Community-Based Services The PCP is in a unique and influential position to direct the Alzheimer’s Disease patient and family to available resources that may assist in care provision and improve the quality of life of both patient and caregiver (Lyketsos et al. Buettner & Fitzsimmons. 2006. health. When nursing home placement does occur.” Given the increasing structure. and (e) lower levels of depression. PCPs often fail to make referrals due to a lack of sufficient knowledge about resources (Hinton et al. (d) a better relationship with the affected individual (Dziegielewski & Ricks. In a study carried out at an interdisciplinary center for older adults in Florida that offered education. Stephens.. 2004) found so few references to non-pharmacological management or referrals to community services that the researchers chose not to report these data... As compared to non-users. family needs) (Schacke & Zank. researchers found positive effects on cognition. Finally. 2002) (using indomethacin). 1998). To achieve benefits. 2003b). Richards. 2003). Discuss with patient and family the use of cholinesterase inhibitors. Gilley. 2007). adult day care is one of the best care settings for the mid-stage individual living in the community.. but it does not appear to improve cognition (Doody et al. Cherry et al. 2006). Reuben. Given the wide range of services needed and the variety of community-based and institutional care settings. patients and their families need a variety of community-based and long-term care resources as a complement to PCP care. and may indicate an increased risk of cognitive decline (Shumaker et al. Results of trials using gingko biloba have been negative or equivocal (Birks & Grimley Evans. (b) fewer hours managing memory difficulties and impairments in activities of daily living and. & Greene. it is recommended that the Alzheimer’s Disease patient attend adult day services at least two days per week for an extended period of at least three months. Winslow. Antioxidant therapy with vitamin E was reported in one trial to postpone functional decline (Sano et al.U. as this dose has been found to result in significantly less caregiver burden (Zarit et al. & Wenger. 2003). Granot. and strain (Gaugler et al. more recent trials have shown no clear benefit (Hogervorst. and perceived overload and strain (Zarit. In the adult day services setting. and personal assistance needed by a person with Alzheimer’s Disease as cognitive impairment worsens. which can improve social and emotional skills. Post & Whitehouse. Roth. Recommendations: Develop and implement an ongoing treatment plan with defined goals. job requirements. 1997).. Early studies indicated that nonsteroidal anti-inflammatory drugs may reduce neuronal damage and cognitive decline (Ham. to treat cognitive decline. 2006.. sustained use of adult day services can delay nursing home placement.. & Huppert.

Referrals must be made to services that are consistent with cultural values and to organizations that can accommodate the needs (e.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent 2000). infection. Williams & Tappen. van Keeken. Treatment: Behavioral Symptoms and Mood Disorders Behavioral symptoms and mood disorders are among the most difficult aspects of Alzheimer’s Disease for both patients and caregivers. it is essential that recommendations be individualized to the particular patient’s and/ or family’s needs.org www. advice. 2007 telephone (800) 272-3900 (800) 438-4380 (916) 552-8995 (800) 510-2020 (800) 445-8106 (800) 677-1116 Website www. such as helplines. Except for emergency situations. They are major causes of excess disability. Often..c4aging. such as physical exercise and recreation. language) of individuals from different ethnic backgrounds.ca. 2006.caregiver. 2007. De Deyn et al. serve as clearinghouses for community services and offer services themselves. behavioral symptoms requires that the PCP rule out any medical explanations. Use the contact information in Table T5 to obtain referrals and information regarding: • Adult day services • Assisted living • Caregiver and patient education programs • Caregiver-physician communication education programs • Continuing care retirement communities • Early Stage programs • Exercise programs • Home health care • • • • • • • • Homemaker/ companion services Hospice Home-delivered meals Legal services Nursing homes Residential care (board & care) Respite care Support groups Recommendations: Develop and implement an ongoing treatment plan with defined goals. 2007). and functional ability (Eggermont. 2006). sleep. agitation.org — CaliFornia VerSion © april 2008 23 . These symptoms encompass a spectrum of behaviors including apathy. and psychotic symptoms. Medications should be used only as a last resort. and institutionalization (Conn & Thorpe. and may range from annoying or disruptive to threatening and dangerous.. & Scherder.niapublications.). verbal and physical aggression. or acute change in.. assessment. 2005). or medication-related causes. Several state-wide and national organizations. and support groups (Friss. information. behavioral symptoms represent the only ways in which peo- Table T5: Support Organizations and Resources for Alzheimer’s Disease Patients and Caregivers organization alzheimer’s association alzheimer’s Disease education and referral (aDear) Center alzheimer’s Disease research Centers of California area agencies on aging Family Caregiver alliance (Caregiver resource Centers) eldercare locator for Continuum of Services Table adapted from Hogan et al. including pain.alz. non-pharmacological strategies are the preferred first-line treatment approach for behavioral problems.gov/alzheimers www.org/adear www. 1993). For example. A sudden onset of. referral to an adult day services center or other organization that does not have any staff members who speak the patient’s and/or caregiver’s primary language may be more confusing and distressing than use of other community-based services that are linguistically equipped to assess and address the needs of the family. mood. It is particularly important that PCPs attend to cultural and language issues (see Assessment section). referral. patient distress. and walking and other forms of physical exercise. caregiver burden. In making referrals to adult day services or any other community-based services. if non-pharmacological approaches prove unsuccessful and they are clinically indicated. affecting up to 90% of people with Alzheimer’s Disease at some point in their illness (De Deyn et al.dhs..org www. and the most common. Discuss with patient and family referrals to early-stage groups or adult day services for appropriate structured activities. which can improve cognition. wandering. Hollander. van Heuvelen. such as the Alzheimer’s Association and the California Caregiver Resource Centers.g. Social workers and “care managers” can offer counseling and link patients and family with needed community resources in a culturally appropriate environment (Lyketsos et al.

and precipitating factors as well as possible consequences of the symptoms. The literature consists primarily of case studies and limited trials of such nonpharmacological interventions as Snoezelen (Chung & Lai. Immediate protection of the patient or caregiver may be necessary or. Neal & Barton Wright. individualized interventions. 2007). Atypical antipsychotics such as risperidone and olanzapine may be useful in the treatment of aggression and psychosis in Alzheimer’s Disease patients.. assisting the caregiver to understand the underlying cause of the behavior. Logsdon. Tondi. & McCurry. McCurry. & Areán. Johnston. non-pharmacological strategies 24 CaliFornia VerSion © april 2008 often better address the underlying reason for the behavior. aromatherapy (Ballard. massage and touch (Viggo Hansen. 2003). 2005. to maintain ambulation and improve patient behavior and mood (Lyketsos et al. van Weert. predictable routine (exercise. avoid both the risks and limitations of pharmacological interventions. Special attention should be paid to the triggers of the problem behavior to select effective. and adapting the treatment plan to remedy the situation (Cherry. Bangma. & Burgio. Logsdon et al. • Remain calm. a recent study involving 90 nursing home residents with mostly moderate-to-severe Alzheimer’s Disease found that participation in a comprehensive group exercise program resulted in significantly greater improvement in affect and mood than either supervised walking or non-therapeutic conversation groups (Williams & Tappen. 2006). Although many have reported positive findings. Lee. As noted above. Gum.. • Use visual cues or barriers to discourage wandering and direct the patient away from unsafe areas. Woods & Roth. The PCP should encourage the establishment of an exercise routine for the patient. as well as limited evidence of their effectiveness (Schneider et al. Cohen-Mansfield & Werner. Boucher. 1999.. • Provide the patient with a structured. Stevens. & Birks. and distracting. Bruinsma. reassuring voice. Orrell. which have been identified as aggression. 2006. Expert opinion and Workgroup consensus suggest that successful management of behavioral symptoms requires the PCP to develop early. and American Psychiatric Association [2007]).. & Yaffe. Jørgensen. 2006]. 1999. this may indicate a need for further study rather than ineffectiveness (Hermans. In general. at the least. American Association for Geriatric Psychiatry [Lyketsos et al. non-aggressive agitation..). meals. Woods et al. arguing. and maintain eye contact. the American Academy of Neurology [Doody et al. 2007. Strauss.g. 1996). 1999. 2006. & Ørtenblad.. & Adamson. 2006). using a gentle. including: • Intervene early to prevent escalation. . Colling. 2005). and mortality (Recupero & Rainey. There is strong evidence in support of non-pharmacologic measures for management of Alzheimer’s Diseaserelated behavioral symptoms in general (Livingston et al. O’Brien. Cohen-Mansfield.. education and support should be made available to an overwhelmed caregiver (see Patient and Family section). Jones. psychosis. Verkaik. 2005). Logsdon. 2005. & Teri. appropriate.. 1999). 2007. & Francke.. The goal is often reduction or modification of the behavior rather than total elimination. Not every behavioral symptom is a problem or requires intervention. Hogan et al. Interventions should begin with the least restrictive alternative and should focus on ensuring safety.). & Vulcano. a behavioral assessment should be conducted (see Assessment section) and non-pharmacological strategies for management of the behavioral symptoms should be implemented. 2007. Feliciano. 2007). 2002). 2003. bright lights (Forbes. There is also evidence that they may delay the need for institutionalization and reduce caregiver burden (Logsdon et al. Sink. however. & Lyketsos. 2007). Morgan. 2005). Zgola. 2005). Logsdon et al. Although evidence for the latter effect is mixed (Livingston et al.. 2000. Non-pharmacological Approaches for Behavioral Symptoms Recent meta-analyses do not provide strong evidence for the effectiveness of many specific non-pharmacological approaches for the treatment of behavioral symptoms (Ayalon. Teri et al. this assessment should include frequency. music (Vink. & McShane. rather than confronting. However. Reichelt. extrapyramidal disorders.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent ple with severe Alzheimer’s Disease can communicate such problems to their caregivers (Smith & Buckwalter. & Dawson.. 2001]. 2002). & Davies. 1998. and individualized care plans which must be re-evaluated regularly (Allen-Burge. Once other medical problems have been ruled out. or disagreeing with the patient (Teri. validation (Neal & Barton Wright. 2000. Birks. Katona. and bedtime should be routine and punctual). Holden. 2005). steps to managing challenging behaviors include identifying the behavior. & Scholten. timing. Spector. 2003). 2001). 2004). Livingston. and reminiscence (Woods. 1997. understanding its cause. 2002). Waite. Paton. Pharmacological interventions should target one or more of the specific behavioral syndromes associated with Alzheimer’s Disease. Ribani.. 2006. To accurately and appropriately target interventions. & Perry. but the potential for serious adverse effects including increased risk of stroke. Peacock. Sink et al. argue against the use of these medications in the majority of cases. Htay. rigorous reviews have shown them to be inconclusive (Chung & Lai. severity. 2007). non-pharmacologic interventions may begin with a modification of the patient’s environment and routine (see Table T6 in this section). Viscomi. This education and support is available through the Alzheimer’s Association and other community organizations. Bottazzi. Several specialty organizations strongly recommend that non-pharmacological interventions be employed as the first line of treatment for behavioral symptoms (e. and prevent medicating away adaptive or helpful behaviors (Cohen-Mansfield. 2007). and mood disorders (Ballard. simplifying the environment and routines.

recommended use. cautions in use. 2006.. slippery floors or throw rugs. 2007. These include awareness of potential drug-drug and drug-disease interactions and side effects (e. Lyketsos et al. 2002). Pharmacologic Interventions for Behavioral Symptoms When non-pharmacological approaches fail to treat agitation or other behavioral symptoms. side effects should be closely monitored (American Psychiatric Association.. Table T7 below in this section includes a description of pharmacologic agents. but treatment is not likely to eliminate them completely. 2006). Caregiver support groups sponsored by the Alzheimer’s Association or Caregiver Resource Centers are an excellent resource for caregivers to learn these and other management strategies. labels. • Allow patients to dress in their own clothing and maintain possessions. McCurry. and potential side effects.g. • Reduce excess stimulation. caregivers and others (consequences) in order to help caregivers better understand and modify the context in which behavioral symptoms occur.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Table T6: Non-pharmacological Approaches for Common Behavioral Symptoms and Mood Disorders Behavioral symptom apathy Sleep disturbances non-Pharmacological interventions Stimulation/activities Simple tasks Sleep hygiene practices Stimulation during the day (esp. which seeks to identify the precipitants (antecedents) of a specific behavior and its effects on the patient.g. 2003). Doody et al. mirrors) offering simple. and avoiding non-essential medications. Teri et al. 2002. Teri. There are several key factors that are influential in medication prescription. predetermined goals.. adult day services) reduction of excessive stimulation/noise in the evening Breakdown of tasks into simple steps redirection Visual cues exercise Safe places to wander enrollment in Medicalert® + Safe return® exercise reassurance Distraction rather than confrontation removal of potential sources of confusion (e. It is also recommended that clinicians begin with low doses (American Psychiatric Association. Sörensen. One well-established approach for caregivers is the ABC (Antecedent-Behavior-Consequence) model of behavioral analysis (Teri. 1997. Behavior-controlling drugs should be used cautiously and only for narrowly specified. When prescribing pharmaceutical agents. Lyketsos et al. PCPs should take the extra time to explain possible benefits and side effects and establish criteria on which to base a decision for continuation. 2000. Logsdon. including noise from TV and household clutter. Symptoms or behaviors may respond to medication.. 2001. Logsdon. • Avoid glare from windows and mirrors. & Janner. 1995). Ham. but must be used with caution due to potential drug interactions and side effects. Karger. & Teri. • Simplify tasks by breaking them down into easy. • Equip doors and gates with safety locks. 2007). manageable steps. • Install grab bars by the toilet and in the shower. 1997.. which may be increased slowly until the behavior has improved. Volicer & Hurley. especially during meals and bathing 25 . • Use lighting to reduce confusion and restlessness at night.. McCurry.. 2005. which must be monitored (Gambert. CaliFornia VerSion © april 2008 eating/appetite disorders Table adapted from Teri et al. straightforward terms.. Post & Whitehouse. Pinquart. increased susceptibility to falls). always using low starting doses and small increases.. Volicer & Hurley). • Provide a safe environment free of sharp-edged furniture. Teri et al. and obtrusive electric cords. worsening of cognitive impairment. 1990. 2002). 2002. 2003 • Explain all procedures and activities slowly and in simple. 2004. 2007). Mittelman. & Gibbons. clocks. Caregiver knowledge of dementia management also has been demonstrated to produce higher quality of care for patients with dementia (Chodosh et al. and • Provide music of the patient’s choosing. finger foods removal of distractions from dining area Soothing music irritability/agitation Wandering Mood disorders Psychotic symptoms Caregivers can be taught techniques for managing behavioral symptoms (Haupt. • Use distraction and redirection of activities. Helping patients to “redirect and refocus” by distracting them from upsetting or dangerous activities in favor of more appropriate ones is another useful approach (Teri et al. or newspapers for orientation to time.. Recent research has shown that training caregivers in these strategies can reduce frequency and severity of behavioral symptoms as well as caregiver depression and burden (Mittelman et al. or adverse effects emerge. & Duberstein. 2002.. psychotropic medications may be used in the management of some symptoms. • Use calendars.

2008). and may (in rare cases) lead to a paradoxic disinhibition (Grossberg & Desai. Muralee. 1995. 2005b. Lanctôt. Two studies have noted that patients’ responses to medications. and risperidone reduced psychosis. Atypical Antispyschotic Agents Evidence exists to support the use of select atypical antipsychotic agents for the management of psychotic and aggressive behaviors. it should be used with caution due to possible drug interactions and negative side effects. Recomendations: To summarize specific recommendations with respect to pharmacologic management of behavioral symptoms: • Prior to initiating treatment with new medication. Antidepressants A recent systematic review of controlled clinical trials of antidepressant use in patients with dementia experiencing depressive symptoms (Bains.. Lyketsos et al. 2007). 2005). The PCP should review the patient’s history with a particular medication if taken before. 2005) also identified an increased risk for mortality among dementia patients. However. & Poland. Shah. Their use. Dagerman. controlled. Although carbamazepine demonstrated significant improvement of symptoms. Alzheimer’s Disease patients in one study treated with atypical antipsychotics scored significantly worse on a recent autobiographical memory measure than did patients who were not taking antipsychotics (Harrison & Therrien. • Periodically reduce psychopharmacologic agents after behavioral symptoms have been controlled for 4 to 6 months to determine whether continuing pharmacotherapy is required (American Psychiatric Association. consider whether the behavior may be caused or exacerbated by a current medication. such as stroke. which may require a few weeks (Grossberg & Desai. typical antipsychotic agents suggests that the increased risk for serious adverse events. insomnia. 2002) concluded that the evidence for use was weak. pain. and no agents are approved by the U. 2003. 2005). A number of recent clinical trials have examined their use in treating behavioral symptoms of Alzheimer’s Disease: Benzodiazepines Benzodiazepines and similar agents that may be used for anxiety.. 1995). Anderson. valproate was not shown to be more effective than placebo (Herrmann.. Food & Drug Administration (FDA) for use in people with Alzheimer’s Disease. Anticonvulsants Recent studies of the use of anticonvulsants for the management of behavioral and psychological symptoms in patients with Alzheimer’s Disease have yielded conflicting results: only two (carbamazepine and valproate) have been the subjects of randomized. 26 CaliFornia VerSion © april 2008 . there may be no better option than atypical antipsychotics for treating Alzheimer’s Disease patients with serious behavioral symptoms (American Academy for Geriatric Psychiatry. Sink et al.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent The use of psychotropic medications with Alzheimer’s Disease patients remains controversial. UTI. neuroleptics.). • Medications used for managing behavioral symptoms should be used cautiously.. & Eryavec. eating behaviors. & Tampi. and agitated behaviors increase the risk for falls. • Delirium. • Systematic trials of single agents should be tried rather than the use of multiple agents. 2007. & Insel. 2007). 2006).g. is about the same as for atypical antipsychotics (Wang et al.. Birks. 2006). & Gupta. however. 2005a. can be affected by biological differences. Lin. etc. pneumonia) should be ruled out as a cause of the behavior.. however. 2006. tricyclic antidepressants. Rothenburg. 2007. and/or environmental conditions that affect both drug metabolism and distribution in the body (pharmacokinetics) and the body’s response to the drug (pharmacodynamics) (Lin. Typical Antipsychotic Agents A meta-analysis of older. 1992. with the exception of atypical antipsychotics (Schneider et al. heart attack. worsen memory impairment. Little evidence exists to support their efficacy. was accompanied by a significantly increased risk for cerebrovascular events. The weakness of evidence could be due in large part to the fact that only a few small studies have been published. A recent meta-analysis of randomized. In some cases. Schneider. the risk for developing tardive dyskinesia is much lower with the atypical agents. Konovalov. constipation. Poland. & Anderson. • Start with low doses and increase gradually until a therapeutic effect is achieved. and the FDA has issued a “black box” warning with respect to the use of atypical antipsychotics in the treatment of behavioral symptoms of Alzheimer’s Disease (American Academy for Geriatric Psychiatry. Lyketsos et al. & Dening. McDonagh. In addition. including psychotropic medications (e. or an acute medical condition (e. placebo-controlled trials of atypical antipsychotics (Ballard et al. cause confusion.g. double-blinded clinical trials. Madhusoodanan. or responses to other medications that might come from the same class as the psychotropic medication in question... and pulmonary infections. Brenner. Cummings & Benson. 2005). 2003). 2006) found that risperidone and olanzepine reduced aggression.S. & Peterson. Reviews conducted by the FDA and others (Carson.

Chol wt gain Modest documentation efficacy in aD ( Chengappa et al. 2007) More sedating. 2006. & Devine. not fDA-approved for dementia treatment. ciprofloxacin. and combativeness.5 mg twice daily or 25 mg at bedtime. overall risk for morbidity and mortality = typicals (e. Blasucci..25 mg at bedtime or 0.g. Agent aripripazole (abilify®) Dosage initial dose: 5 mg/day (range 5 to 10 mg/day2 mg/day=placebo) (Mintzer et al. blood sugar (for possible new onset diabetes) and cholesterol every 3 months Clozapine (Clozaril®) olanzapine (Zyprexa®) initial dose: 2. blood sugar (for possible new onset diabetes) and cholesterol every 3 months Has best documentation for BSPD use (Brodaty et al... severe psychomotor agitation. cardiac and respiratory arrest with benzodiazepines). Southard. weight neutral Documentation: case reports CaliFornia VerSion © april 2008 27 . 2003. hallucinations. Zhong. Meehan et al... 2000) Quetiapine (Seroquel®) initial dose: 12. pCps may want to refer patient to a geriatric psychiatric specialist. Street et al. 2003. tariot. haloperidol). De Deyn & Buitelaar. weight neutral Dopamine blocker with agonist properties Modest documentation Generally not used as a first line agent Mandatory weekly blood monitoring and patient monitoring registry Black Box Warnings: adverse cardio/respiratory effects (orthostatic hypotension. decreased by smoking Must monitor Hgba1c. benzodiazepines (due to additive CnS depression). & Francis.5 placebo)-injectable: 2. & pappert.. & Wick. 2007. Minkwitz. myocarditis Do not use with bactrim or tegretol (due to increased risk of agranulocytosis). Struhal. Max: 200 mg twice daily Therapeutic dose in aD not very firm (Rainer. 2000) Has anticholinergic activity. blood sugar (for possible new onset diabetes) and cholesterol every 3 months avoid in lBD and PD Worst offender DM. Mintzer. Goetz. preval.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Table T7: Pharmacological Treatment of Behavior and Mood ANTIPSYCHOTICS Recommended Uses: Used to control problematic delusions. cogentin or benadryl (due to strong anticholinergic effect) levels substantially increased by fluvoxamine. beware of transient orthostasis Minimal ePS. Kohen. Should be reserved for use only when other treatments have failed. similar to placebo limited documentation risperidone (risperdal®) initial dose: 0. 2000. CaUtion: these are not FDa-approved for dementia treatment.5 to 5 mg iM (De Deyn et al. ATYPICAL ANTIPSYCHOTICS (Second Generation Antipsychotics) General Cautions: Diminished risk of developing extrapyramidal symptoms (ePs) and tardive dyskinesia relative to typical antipsychotics.5 mg at bedtime (generally<placebo except for anxiety) Max: 7 to 10 mg/day (15 mg /day= . leurgans. pfolz. 2004. but use has been associated with increased risk for stroke. fluoxetine. 2005) requires baseline and periodic eKGs for possible QTc elevation Should be given with food to increase bioavailability Generally classified as non-sedating.. Katz et al. 2007) initial dose: 12.5 mg twice dailyMax: 75-150 mg (in divided doses) Comments and Cautions Generally classified as non-sedating. Haushofer. agranulocytosis. seizures. 2002.25 mg po BiD effective dose 1 mg/day Current research supports its use in low doses ePS more common at 2 mg Should monitor Hgba1c.. 1999) Ziprasidone (Geodon®) initial dose: 10 mg/day Max: 80 mg/day -injectable: 20 mg iM (Berkowitz. may impair gait-Must monitor Hgba1c.

-Titrate to maximum of 300 mg daily in divided doses initial dose: 125 mg daily Generally Titrate to maximum of 500 mg twice daily. if present. etc.. which can occur in 50% of elderly after two years of continuous use. severe psychomotor agitation. repetitive. side effects involving the cardiovascular. 1998) Monitor liver enzymes. often severe. there is also the inherent risk of developing irreversible tardive dyskinesia. General Cautions: not fDA-approved for dementia treatment Agent Carbamazepine (Tegretol®) Dosage initial dose: 25 mg twice daily. platelets & PT/PTT as indicated note: added lab tests increase cost and discomfort for the patient Black Box Warnings: pancreatitis. although some may go higher Comments and Cautions Monitor CBC and liver enzymes regularly Drug interactions Problematic side effects-one controlled study (tariot et al. anticipate ePS. impulsive.. and drowsiness limit their usefulness May be used for intractable hiccups. and combativeness. 2004) Valproate (Depakote®) 28 CaliFornia VerSion © april 2008 . hepatotoxicity Poorly documented efficacy For impaired impulse control. useful alternatives to antipsychotics for severe agitated. anticholinergic symptoms. hallucinations. 2008. Agent Chlorpromazine (Thorazine®) Dosage Do not use for behavioral psychiatric problems Comments and Cautions Significant hypotension.. etc. con’t. lower the dose or switch to another agent Haloperidol parenteral may be useful in acute behavioral issues that require a rapid response Thioridazine SHoUlD noT be prescribed for aD patients avoid other agents listed here in aD psychiatric behavioral conditions as well Haloperidol (Haldol®) — Thioridazine (Mellaril®) Benztropine mesylate (Cogentin®) Fluphenazine (Prolixin®) loxapine (loxitame®) Molindone (Moban®) Perphenazine (Trilafon®) Thiothixene (navane®) Trihexyphenidyl (artane®) Trifluoperazine (Stelazine®) no recommended dose MOOD STABILIZERS (ANTI-AGITATION AGENTS) recommended uses: used to control problematic delusions. and extrapyramidal systems. lonergan & luxenberg. and combative behaviors. if at all possible. aggressive behavior. consider a SSri (Konovalov et al. TYPICAL ANTIPSYCHOTICS General Cautions: Current research suggests that these drugs be avoided.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Table T7: Pharmacological Treatment of Behavior and Mood. they are associated with significant. nausea/vomiting. not fDAapproved for dementia treatment.

GuiDeline for AlzheiMer’s DiseAse MAnAGeMent

Table T7: Pharmacological Treatment of Behavior and Mood, con’t.
ANXIOLYTICS—BENZODIAZEPINES recommended uses: for management of insomnia, anxiety, and acute agitation. the BDzs as a class should be avoided if possible, but can be useful in the short term and in patient specific instances. General Cautions: high risk for cognitive impairments as well as the risk for falls. Paradoxical agitation possible, but rare. infrequent, low doses 1/3 to1/2 the usual adult dose are least problematic. regular use can lead to tolerance, addiction, depression. Watch for etoh consumption with BDz. Agent alprazolam (Xanax®) Dosage in general, for all of the BDZs, order one-third to one-half the usual adult starting dose 1 mg clonazepam = 1 mg lorazepam Comments and Cautions High potency, intermediate acting Withdrawal symptoms may be problematic

Clonazepam (Klonopin®)

High potency, long acting Can be useful in BDZ withdrawal no active metabolite low potency, intermediate acting Has active metabolites, resulting in accumulation of the drug in the elderly High potency, intermediate acting noTe: lorazepam is not short-acting and is not safer than other BDZs The elderly are more sensitive to BDZs than younger patients low potency, intermediate acting low potency, intermediate acting High potency, short acting rebound insomnia

Diazepam (Valium®)

lorazepam (ativan®)

1 mg of lorazepam = 5 to 10 mg of diazepam oral, sublingual, parenteral — — Generally avoid use (exception: oral sedation for some dental procedures)

oxazepam (Serax®) Temazepam (restoril®) Tiazolam (Halcion®)

ANXIOLYTICS—NON-BENZODIAZEPINES Agent Buspirone (Buspar®) Dosage initial dose: 5 mg twice daily Max: 20 mg three times daily non-BDZ sleep med. 5 mg orally at bedtime Comments and Cautions May be useful in mild-moderate agitation only May take 2-4 weeks to become effective Poorly documented efficacy reduced hepatic clearance in the elderly amnestic syndrome, sleep walking, hallucinations note: in one study (adults, primary insomnia) trazodone was as effective as zolipidem at one week, slightly less effective at week two (Walsh et al., 1998)

Zolpidem tartrate (ambien®)

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29

GuiDeline for AlzheiMer’s DiseAse MAnAGeMent

Table T7: Pharmacological Treatment of Behavior and Mood, con’t.
ANTIDEPRESSANTS—TRICYCLICS General Cautions: selection is usually based on previous treatment response, tolerance, and taking advantage of potentially beneficial side effects, e.g., sedation vs. activation. A full therapeutic trial requires at least 4-8 weeks. As a rule, doses are increased using increments of the initial dose every 5-7 days until therapeutic benefits or significant side effects become apparent. After 9 months, reassess need for medications by dose reductions. Discontinuing medication over 10-14 days limits withdrawal symptoms. note: Depressed patients with psychosis require concomitant antipsychotic treatment. Agent Desipramine (norpramin®/Petrofrane®) Dosage initial dose: 10-25 mg daily Max: 150 mg daily Comments and Cautions Tends to be activating, give in aM lower risk for hypotensive and anticholinergic side effects (anticholinergic activity less than paroxetine) May cause tachycardia Significant hypotensive and anticholinergic effects are limiting

Doxepin (Sinequan®/adapin®)

initial dose: 10-25 mg at bedtime Max: 150 mg daily HS-note: all TCas have high risk of oD initial dose: 10 mg at bedtime Max: 100 mg daily

nortriptyline (aventyl®/Pamelor®)

Tolerance profile similar to desipramine but tends to be more sedating,more anticholinergic Moderate anticholinergic activity Moderate sedation may be useful for agitated depression and insomnia

ANTIDEPRESSANTS—HETERO- AND NONCYCLICS SELECTIVE SEROTONERGIC REUPTAKE INHIBITORS (SSRIs) General Cautions: these agents may prolong the half-life of other drugs by inhibiting various CYP450 isoenzymes. As a class, typical side effects can include sweating, tremors, nervousness, insomnia/somnolence, dizziness, and various gastrointestinal and sexual disturbances. Withdrawal effects may occur if agents are abruptly discontinued Agent Citalopram (Celexa®) Dosage initial dose: 10 mg daily Max: 40 mg daily Comments and Cautions Well tolerated; nausea and sleep disturbances in some Demonstrated efficacy for treatment of BPSDs (comparable to risperidol) (pollock et al., 2007); comparable to perphenazine (pollock et al., 2002); both significantly more effective than placebo Well tolerated; nausea and sleep disturbances in some activating Very long half life Side effects may not manifest for a few weeks —

escitalopram (lexapro®) Fluoxetine (Prozac®)

initial dose: 10 mg daily Max: 20 mg/day initial dose: 10 mg every other day Max 20 mg daily initial dose: 25 mg daily Max: 100 mg twice dailyreduce by half when using with Coumadin, Xanax, or Halcion initial dose: 10 mg daily Max: 40 mg daily initial dose: 25 mg daily Max: 200 mg daily

Fluvoxamine (luvox®)

Paroxetine (Paxil®) Sertraline (Zoloft®)

less activating but more anticholinergic than fluoxetine Well-tolerated less effect on metabolism of other medications

30

CaliFornia VerSion © april 2008

GuiDeline for AlzheiMer’s DiseAse MAnAGeMent

Table T7: Pharmacological Treatment of Behavior and Mood, con’t.
SEROTONIN/ NOREPINEPHRINE REUPTAKE INHIBITORS (SNRIs) Agent Duloxetine (Cymbalta®) Dosage initial dose: 20 mg/day Max: 60 mg/day Comments and Cautions activating Food delays absorption Causes low to no sexual dysfunction avoid use in patients with liver impairment due to increased risk of liver toxicity activating Most potent SSri-plus (also inhibits norepinephrine reuptake in divided doses or once daily as SR) Causes low to no sexual dysfunction Withdrawal symptoms can be severe

Venlaflaxine (effexor®)

initial dose: 37 mg twice daily .5 Max: 225 mg/daydoses less than 150 mg/day only SSri, need 150 to 225 mg/day for serotonin/ noradrenergic activity

ANTIDEPRESSANTS—TRICYCLICS General Cautions: selection is usually based on previous treatment response, tolerance, and taking advantage of potentially beneficial side effects, e.g., sedation vs. activation. A full therapeutic trial requires at least 4-8 weeks. As a rule, doses are increased using increments of the initial dose every 5-7 days until therapeutic benefits or significant side effects become apparent. After 9 months, reassess need for medications by dose reductions. Discontinuing medication over 10-14 days limits withdrawal symptoms. note: Depressed patients with psychosis require concomitant antipsychotic treatment. Agent Benzodiazepines Dipenhydramine Dosage — — Comments and Cautions not recommended for use by aD patients; see Comments and Cautions above not recommended for use by aD patients or elderly, due to anticholinergic properties; see Comments and Cautions above in older hospitalized patients, use is associated with increased risk of cognitive decline and other adverse effects with a dose response relationship (agostini, leo-Summers, & inouye, 2001) Useful sedative for sleep at doses well below those required to treat depression. Minimal affect on sleep physiology and no discernible anticholinergic side effects — —

Trazadone (Desyrel)

25-100 mg at bedtime

Zaleplon (Sonata®) Zolpidem (ambien®)

5-10 mg at bedtime 5-10 mg at bedtime

CaliFornia VerSion © april 2008

31

But note: there have been no adequate studies of eCt in demented patients to date (Katagai. mostly clinical experience nefazodone initial dose: 50 mg twice daily Max: 150-300 mg liver toxicity limits use initial dose: 25 mg at bedtime Max: 200-400 mg/day (divided doses) Trazodone (Desyrel®) ELECTROCONVULSIVE THERAPY (ECT) (for use with patients non-responsive to or unable to tolerate pharmacological therapies) recommended uses: for those at risk of injuring or starving themselves. MISCELLANEOUS Agent Buproprion (Wellbutrin®) Dosage initial dose: 37 mg daily. 2007). electrolytes. Yasui-furukori. also anxiety aM orthostatic hypotension(rare) administer with caution in patients with PVCs no sexual dysfunction Priapism is a known side effect Documentation fair.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Table T7: Pharmacological Treatment of Behavior and Mood. possible rapid improvement in energy level To minimize risk of insomnia. usually achieved with 150-300 mg twice daily initial dose: 7 mg at bedtime . SCr/BUn. weight gain Causes low to no sexual dysfunction Drug interactions 3a4 twice daily of co-administered Xanax/Halcion no sexual dysfunction Moderately effective. useful for associated HS and daytime for “agitation” Primarily used for insomnia. Kikuchi.50 Max immediate Release: 150 mg three times daily Max Sustained Release: 150 mg twice daily Max extended Release: 450 mg daily note: when ordering specify “release form” initial dose: 150 mg daily Blood levels between 0. & Kaneko. the severely psychotic. urine specific gravity. or intolerant of. con’t.5 Max: 30 mg at bedtime Comments and Cautions activating. pharmacologic treatments for depression. give second dose before 3 PM Causes low to no sexual dysfunction avoid in agitated patients and those with seizure disorders lithium anti-cycling agent that may also be used to augment antidepressant medication elderly are prone to developing neurotoxicity at higher doses Baseline labs: TSH.2-0. and the patients not responding to. then to: . Table adapted from FDA approved package inserts 32 CaliFornia VerSion © april 2008 . eKG Mirtazapine (remeron®) Generally well-tolerated-Promotes sleep (at lower doses) May increase appetite.6 meq are generally adequate.

which includes caregiver input. Goldman. & McCurry. a complex and multidimensional issue in terms of both assessment and intervention. therefore. One of the most effective behavioral treatments for depression involves increasing pleasurable activities (Lewinsohn. apathy syndrome. and delusions may be found in a third of Alzheimer’s Disease patients with depression. In one recent study. Daily exercise and redirection have been used successfully for this purpose (Dalsania. 1997). & Brand. Depression occurs frequently in individuals with mild or early-stage Alzheimer’s Disease (Hogan et al. writing. Collateral information from the caregiver is essential in diagnosing behavioral symptoms such as depression. and the PCP may find the Cornell Depression Scale for Depression in Dementia (Alexopoulos. Complex door locks or safety gates may be installed. or is it aimless wandering? The answers to these questions can help caregivers make behavioral modifications to reduce wandering (Futrell & Melillo. a finding replicated through a controlled clinical trial with moderately impaired individuals (Teri. physical therapy. The Alzheimer’s Association’s MedicAlert® + Safe Return® program should be recommended to caregivers and families early in the treatment process. 2006). 2003). although their efficacy has yet to be demonstrated in randomized controlled trials (Hermans et al. and psychosocial well-being were significantly less depressed at both 6. affecting as many as 50% of patients (Lyketsos & Olin. 2003). persons with earlystage Alzheimer’s Disease who participated in recreational activities designed to stimulate cognitive. 2003). & Grosscup. 2000). as well as pharmacologic treatment (e.g. & Shamoian. 2007). 1988) (see Appendix E). and the psychosis of Alzheimer’s Disease (Jeste & Finkel. Uomoto.g. 2005). Health care providers need to be aware of how depression in Alzheimer’s Disease manifests differently from that of other types of depression. Recreationally oriented programs (e. 2004). suspicion. the mood symptoms may wax and wane. 2000). Unnecessary clutter should be removed. Caregivers should be advised that wanderers burn extra calories.). There is evidence that the nature of depressive symptoms changes with the severity of dementia. the PCP must recognize that presence of these behavioral symptoms may indicate an underlying depression (Zubenko et al. physical. Recommendations for early-stage Alzheimer’s Disease should include non-pharmacological as well as pharmacological approaches to reduction of depressive symptoms when present (see Patient and Family Education and Support section). and is often among the initial symptoms of the disease (Lyketsos & Olin. 2002).. and this strategy has been tested successfully in persons with Alzheimer’s Disease (Teri. adult day services and early stage programs) offer another means of increasing pleasurable experiences for the person with Alzheimer’s Disease through involvement in art. 2006). 2004). and therapeutic touch. patients who wander should wear identification at all times. 2007).g. Agitation Agitated behavior. 2002). Recognition of depression in Alzheimer’s Disease requires awareness of the overlap in presenting symptoms of delirium. 2007). Gauthier. They should be given an unrestricted place to wander. 2007). Consultation with and/or referral to a psychiatrist is warranted if the Alzheimer’s Disease patient with depression has high medical comorbidity or other diagnostic and treatment concerns. sertraline hydrochloride) (Lyketsos et al. with symptoms of dysphoria being associated with earlier stages of Alzheimer’s Disease and agitation. Zubenko et al. One of the main roles of the PCP is to advise families about the danger of wandering.. boredom). is a frequent symptom in Alzheimer’s Disease patients (McGonigalKenney & Schutte.. as it can help identify. Logsdon. and motor slowing being more typical of depressed patients in the later stages of the disease (Lyketsos & Olin. such as a fenced yard. Is there a goal for the wandering? Does the patient appear to be searching for something. Doors and exits can be disguised with curtains or gridlines. Categories of interventions include CaliFornia VerSion © april 2008 33 . For instance.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Common Alzheimer’s Disease-Related Behavioral Symptoms and Their Treatment Wandering To assess wandering. 2001). Depression Depression is common in Alzheimer’s Disease. and further functional decline (Lyketsos & Lee. although the need for easy exit in case of fire or other emergency must be kept in mind (Rowe & Glover. to be a useful tool in diagnosing and treating major depression and monitoring suicidal potential. occupational therapy. Wandering is not likely to respond to pharmacologic intervention (Herrmann.. Moderate evidence exists for the efficacy of exercise training to reduce depressive symptoms (Teri et al.. 2002. Sullivan. unless the wandering is due to anxiety from untreated depression. and other meaningful. and return wandering or lost patients who have been registered with the program (Lachenmayr. 1991). Abrams. productive activities. caregivers should try to identify the triggers for wandering behaviors (e. and may be associated with irritability... locate. reality orientation. music. Fear. & Lysy. McKenzie. apathy. Young. & LaFazia. Research has demonstrated that depression in persons with mild-to-moderate Alzheimer’s Disease may be reduced by having caregivers plan and carry out pleasant activities with their loved ones (Teri & Uomoto. Wright & Persad.. In order to decrease the hazards.and 12-month follow-ups than their peers who did not participate (Buettner. examples of other behavioral modifications include music therapy. anxiety. bright light therapy. 1980). Current consensus is that pharmacologic treatments are not indicated for wandering. so additional snacks may need to be provided to decrease the risk of weight loss. In-house alarms or chimes may be used to prevent unsupervised wandering.

& Greene. 1998): • Review treatment of existing comorbid conditions. In addition.g. Antidepressants (e. A study conducted with patients in the moderate stages of Alzheimer’s Disease demonstrated that a combination of “sleep hygiene” education for caregivers and daily walking for patients effectively reduced sleep disturbances. Sleep disorders Sleep disturbances are common and pharmacologic intervention should be considered only when other non-pharmacologic interventions have failed (American Psychiatric Association.. 2007). Phillips. Routine reassessment requires that the PCP (Larson. they have not been studied specifically with respect to the insomnia associated with Alzheimer’s Disease. appropriate activities. Logsdon. including the Alzheimer’s Association’s Medic Alert® + Safe Return® Program for patients who may wander. For stronger sedation. 2005). 2007). Vitiello. Warshaw. which may include incontinence.. 2005). Treatment: Comorbid Medical Conditions When treating the Alzheimer’s Disease patient’s other chronic and acute medical conditions. 1995). 1995. 2007. zaleplon. Shapira.). Elements of the “sleep hygiene” intervention included the following: • The sleeping area should be free of distractions and might contain nightlights if helpful to the patient.. & Nikolaus. 2005). anxiety and agitation that cannot be handled by gentle reassurance may respond to short-acting anxiolytics. Diphenhydramine hydrochloride (overthe-counter) should be avoided because it may increase confusion due to its anticholinergic effects (Inouye. or side effects from other drugs underlie the insomnia (Warshaw et al. Koczy.. 2005). & Busto. • Increased exercise or activity should be provided in the morning and early afternoon. Pollock et al. Hamers & Huizing. etc. the PCP must assess the patient’s (and caregiver’s) ability both to understand and to participate in the decision-making process. which often has lingering effects. and that this impact will increase as Alzheimer’s Disease progresses. Although zolpidem. & Chang. task simplification. & Teri. Pharmacologic treatment of sleep disorders must take into account whether depressive symptoms.. THEN use medications targeted to specific behaviors. Stephens. families typically need assistance in setting up and maintaining such routines. and nighttime fluids and diuretics should be restricted. • IF non-pharmacological approaches prove unsuccessful. Note that side-effects may be serious and significant. • Naps should be limited and kept short. Sproule. such as oxazepam or lorazepam (both of which may have significant adverse effects) (Sink et al. Simple remedies. 1995). such as use of melatonin. or more frequently if required by the patient’s health (see Assessment section). 1998). Eichner. Whenever new treatment plans or interventions are considered. such as environmental modification. However. • Evaluate acute changes. and • Referral to social service agencies or support organizations. but the efficacy of these drugs has not been demonstrated in controlled studies. participation in a high-quality adult day services program by itself was shown to improve nighttime sleep by keeping dementia patients engaged and reducing inactivity during the day (Femia.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent modifying the environment. a low dose of antipsychotic is preferable to a longer-acting benzodiazepine. Great caution must be exercised and caregivers warned because of the possibility of reactions to major tranquilizers. the use of restraints is not recommended (Post & Whitehouse. such as nighttime awakenings. Zarit. 2007.g. Gwyther. minor tranquilizers. fear. and • Expect unreported problems (e. With respect to medication. or benzodiazepines may suffice in intermittent short-term doses. instability and falls.. 2005). 2005. • Patients should be dressed during daytime hours. 2002). urinary tract infection) . and ramalteon have been used safely in the elderly (Glass. if clinically indicated. and use of physical or chemical restraints (Roper. Lanctôt. and depression (McCurry. 1995)..) Recommendations: Treat behavioral symptoms and mood disorders using: • Non-pharmacologic approaches. by forgetting to take required medications). • Caffeine and nicotine should be avoided. In accordance with studies conducted in the nursing home environment. as may a tepid bath or light snack high in carbohydrates (Warshaw et al.. warm milk and tryptophan before sleep may be helpful. Regular surveillance is necessary. 1991). the PCP must be aware that cognitive impairment will often have an impact on the patient’s ability to manage these conditions (e.. Trazadone). & Koff. . and expert consensus suggests that health maintenance visits should be scheduled at least every six months. pain.. or citalopram (Herrmann & Lanctôt. More recently. but should be terminated at the earliest possible time (Warshaw et al. and agitation. including review of administration and dosage of medications. (See Table T7 in this section for more information regarding pharmacological treatment of these symptoms. Pollock et al. interpersonal strategies. caregiver education alone is often insufficient (McCurry et al.g. Use of various dopamine 34 CaliFornia VerSion © april 2008 agonists has been described in case reports. Herrmann. Gibbons. may help insomnia. as it has been found to increase mortality (Bredthauer. Becker.

& Travis. and painful treatments. Christmas. García-Ordoñez. it is important to determine whether low scores are due to sensory deficits or to actual cognitive decline. Treating patients with Alzheimer’s Disease depends upon integration of patient and family preferences with the clinician’s estimation of relative risks and benefits of the treatments under consideration. & Abrass. Gillick. therefore. Kane. CaliFornia VerSion © april 2008 35 . such as diabetes and congestive heart failure. Hoefler). specialists in geriatric dentistry should be asked to recommend special oral devices and procedures for use by caregivers (Chalmers & Pearson). and the potential for treatments to relieve these symptoms. 2003). As the patient’s dementia worsens and the ability to understand treatments and participate in medical decision-making declines. For example. as individuals with Alzheimer’s Disease have an especially high risk of tooth decay even before diagnosis. Finucane. 2008). may provide guidance in determining appropriate management. Recommendation: Provide appropriate end-of-life care. Treatment: Palliative and End-of-Life Care In the early stages of Alzheimer’s Disease. Recommendation: Provide appropriate treatment for comorbid medical conditions. 2005. Christmas. Daily oral hygiene can help prevent loss of teeth and keep gums in good repair. hearing aids) are optimal and are used properly (Grossberg & Desai.g. ambulatory individuals.. Sensory deficits can affect patient performance on assessment and evaluation scales. & Mulloy. 2000. The PCP should ensure that corrections (e. and overall quality of life (Chalmers & Pearson. often leading to the use of physical restraints. including palliative care as needed. which increases with the severity of cognitive decline (Ellefsen et al. Hoefler.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Visual and auditory deficits are common in older adults and may further impair the patient’s self-care abilities. The advisability of routine screening tests.. weight loss is likely to occur for a variety of reasons ranging from forgetfulness and distraction to deterioration of motor skills (Amella. hospitalization. the goals of treatment often shift their primary focus to the relief of discomfort (see Patient and Family Education and Support section). Grant. 2007. It should be noted that current evidence argues against the use of feeding tubes in patients with severe dementia due to uncertainty about whether nutritional intake has any clinically meaningful outcomes in advanced dementia (Finucane. and invasive procedures including artificial nutrition and hydration will depend upon the severity of the dementia. Ouslander. 2000. Oral diseases can have a negative effect on overall health. Volicer & Hurley. which may result in increased confusion and a decrease in quality of life for the patient with Alzheimer’s Disease (Gillick.” 2006). 2008). & Gómez-Huelgas. as a patient progresses from mild to severe dementia. as well as exacerbate symptoms of cognitive decline. 1999). behavioral symptoms. reducing the risk of periodontal disease. A particular challenge with respect to tube feeding in patients with severe Alzheimer’s Disease is the tendency of confused patients to pull out the feeding tube. 2005. which often requires complex. Martínez-Manzanares. nutritional intake. Routine dental care is essential for the Alzheimer’s Disease patient. as well as evidence that tube feeding does not necessarily prolong life or decrease suffering in severely demented patients (Alvarez-Fernández. 2003. glasses. invasive. and treatment of newly diagnosed diseases. The presence of pain or non-pain-related symptoms. When routine dental care becomes too challenging for Alzheimer’s Disease patients. Such goals should include management of chronic medical diseases. 1994). social interactions. the treatment goals may be similar to those of otherwise healthy. & Leff. “Oral health of people with dementia.

.

Schulz et al.. 1997. and sacrifices involved in caring for someone with dementia. Sherrod. 2007. Katon. 2008). The burden of caring for an impaired relative has been associated with several risk factors that encompass physical. • Discuss the intensity of care and other end-oflife care decisions with the Alzheimer’s Disease patient and involved family members while respecting their cultural preferences. Zhang. On the other hand. O’Brien. and caregivers who have greater support from their spouses and families have lower risk for depression (Atienza et al. While education and support services have historically focused on caregivers. Poulos. Factors such as the quality of the caregiver/patient relationship.. Hooker. and the patient’s abilities. A body of research over the past 25 years has found family caregivers to be a vulnerable and at-risk population that the health and long-term care system often neglects (Family Caregiver Alliance. Gallagher. Patient and caregiver education and support are essential components of disease management. Schulz. earlier diagnosis of Alzheimer’s Disease and mild cognitive impairment (MCI) is resulting in a growing population of early-stage individuals who need and are able to benefit from education and support interventions. caregivers have been shown to experience elevated levels of depression (Atienza. that perception mischaracterizes the reality of where most long-term care is provided and by whom. Tennstedt.org Caregiver Resource Centers (800) 445-8106. 1999. preferences. 1999. Rose.. However. 2002). 2006).. there is increasing evidence that caregiver assessment. and goals of Alzheimer’s Disease care with the patient and family in a manner consistent with their values. Schulz & Beach. Cohen. Draper. Poulos. social. In terms of psychological outcomes. Pinquart. 1999). Collins. and referring them to community resources. Austrom et al. & Ehrlich. 1996. • Pay particular attention to the special needs of early-stage patients. Yee. consultation on care needs and options. Lovett. psychological. progression. Brewer. Russo. Schulz et al. respite care. Cohen & Wills. 2004). treatment choices. support groups. type and frequency of behavioral symptoms exhibited by the person with dementia. MacLean. Over half of all Alzheimer’s Disease patients live in home settings (American Geriatrics Society. Logsdon. 1989. & Becker. & Sultzer. & Duberstein. and community resource referral can all lead to improved well-being and enhancements in quality of life for both caregiver and care receiver (Feil.). Von Kanel et al. Bookwala. Nearly three-quarters of Alzheimer’s Disease caregivers are women. with an average age of about 48 (Ory. & Schulz.. Recommendations • Integrate medical care with education and support by connecting patient and caregiver to support organizations for linguistically and culturally appropriate educational materials and referrals to community resources. education. increased social support has been linked to greater well-being (Atienza et al. and have been shown to reduce depression in both Alzheimer’s Disease patients and their caregivers and to delay institutional placement.. Yaffe et al. 2001. 1995. & Scanlan. www. 1995). and financial domains (Ory et al. 2006. & King. 1995). involving them in care planning.. culture. it is no surprise that caregivers express a number of unmet needs for information and support. 2003. and most caregivers rate their own physical health as fair to poor (Vitaliano et al. With the heavy burden. McCurry. this section of the guideline reviews education and support interventions separately for early-stage individuals and patients in the more advanced stages of Alzheimer’s Disease. Vitaliano. Vitaliano. stress. availability of a family and/or community support system. 2001. Consequently.caregiver. Hoffman. & Fleissner. and financial resources.alz. Sörensen. and 87% of Alzheimer’s Disease patients are cared for primarily by family members (Alzheimer’s Association & National Alliance for Caregiving. CaliFornia VerSion © april 2008 37 . & Clark. Patient and Family: Referral to Support Services and Organizations for Caregivers Family care is the most important source of assistance for people with chronic or disabling conditions who require long-term care. including the Alzheimer’s Association. and the flexibility of the caregiver in response to lifestyle changes must be considered when evaluating the strengths of a caregiving relationship and the degree of burden likely to be experienced (Family Caregiver Alliance. 1985).org or your own social service department.. & Teri. The emotional toll placed on caregivers is profound and a significant source of caregiver morbidity (Damjanovic et al. Although policymakers and health care providers frequently associate long-term care with nursing homes. 2002). 2006).GuiDeline for AlzheiMer’s DiseAse MAnAGeMent patient anD FaMilY eDUCation anD SUppoRt Overview Education and support services for both patients and families affected by Alzheimer’s Disease are critical for effective long-term management of this chronic progressive disease. & Thompson. 2007. • Discuss the patient’s need to make care choices at all stages of the disease through the use of advance directives and identification of surrogates for medical and legal decision-making. heeding their opinions and wishes. educational level. Schulz & Williamson. • Discuss the diagnosis. Rivera. legal counseling.. who are usually (but not always) members of the patient’s family. www. Organizations include: Alzheimer’s Association (800) 272-3900. 1986. 2007.

There is strong evidence for the effectiveness of psychoeducational/skill building programs. Frazier. Schulz.. and disruptive effects of behavioral and psychological symptoms exhibited by the patient with alzheimer’s Disease Caregiver’s response to and tolerance for these symptoms Formal and informal support services available Caregiver’s perception of whether he/she receives sufficient emotional support Caregiver’s ability to make lifestyle adjustments. Mittleman. 2004.. and adult day service programs. Roth. 2007). Bowman.. Psychoeducational programs have been shown to be among the most efficacious forms of therapy. 2006) (see Treatment section and Table T5) The PCP must address caregiver support on an ongoing basis. Caregiver Education Studies have shown that education and support for caregivers increases the chances of adherence to treatment recommendations for patients (Callahan et al.... 2007. & Skaff. & Roth.. 1996. and relevant knowledge. as both research and clinical practice suggest that these interventions may decrease behavioral symptoms. A recent review of this literature found 19 studies that supported the efficacy of a variety of caregiver interventions. depression.. and multicomponent interventions that include some or all of these features (Mittelman et al. The local Alzheimer’s Association chapter or other local agency support groups and community resources such as the Caregiver Resources Centers should be recommended (American Psychiatric Association. 2006. including psychoeducational skill building programs. 2006). 1990). 1998). 2006. with increased emphasis on treatment fidelity) that have identified intervention strategies meeting criteria for evidence-based psychological treatments (Yon & Scogin. 2001. provide a support system for people who often feel isolated from their communities. & Zucchero. 2007). 2007. and multi-component interventions (Gallagher-Thompson & Coon. Shulman. Mullan. promote compliance with treatment plans. 2004. & Klinger. frequency.. 2002. and caregivers who reported more positive feelings were less likely to report depression (Cohen et al. & Horowitz. 2006. support groups. Pearlin. and behavior will ensure that the prescribed treatment strategy is appropriate to family values and culture (American Psychiatric Association..g. family. 1994. Fillit et al. Clay. Fillit et al. 2005.. including taking over household responsibilities and decision-making within the home Table adapted from Family Caregiver Alliance... and improve mood in patients and family members alike (Doody et al. 2007. and assess caregivers’ mental and physical health regularly (see Assessment section). even following bereavement (Boerner. 2006). randomized controlled trials of manualized treatments based on a coherent theory of change. 2006 Mittleman et al. Cohen.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Monahan. support group participation.. Mittleman. Callahan et al. Family Caregiver Alliance.. 38 CaliFornia VerSion © april 2008 . Fillit et al. Based on the agreed-upon goals. & Shifren. The last ten years have seen tremendous growth in the number of highquality treatment outcome studies (e. 2007. 2006. & Vernich. a discussion regarding the expected effects (positive and negative) of interventions on cognition. and the continuous availability of ad hoc telephone support may preserve caregiver health (Mittelman. Both patients and caregivers also may benefit from the use of technological methods such as computer networks and telephone support programs to provide education and virtual support (Doody et al. 2007) and delay institutionalization of Alzheimer’s Disease patients (Doody et al.. Shulman. Evidence suggests that counseling. The PCP should encourage the caregiver to participate in educational programs. 2001. Clay. Vickrey et al. Schulz. psychotherapy. and friends. Support groups may be helpful. 2005). 2006). 2006. & Haley.. Pinquart & Sörensen. Lyketsos et al. Referral to Support Services Seamless resource referral and access to critical services for both patients and caregivers are considered essential (Family Caregiver Alliance. there is a need for interventions that specifically target the unique problems of these caregivers. 2001). ability. 2007). Vickrey et al. 2006. Evidence-based Interventions Given the potentially deleterious psychological and physiological outcomes associated with Alzheimer’s Disease caregiving. Steinberg. Ferris. 2006). Colantonio. Mittelman. Table P1: Factors Affecting Caregiver Ability to Cope the ability to cope with caregiving depends upon: Quality of the caregiver’s relationship with the person with alzheimer’s Disease prior to the onset of the disease Caregiver’s emotional and physical health Type. The PCP should provide information and education about the current stage of the disease process and talk with the patient and family to establish treatment goals (Feil et al. TothCohen et al. respite services. with a broad impact beyond knowledge acquisition: participating caregivers have shown consistent improvement on measures of burden. mood. Cohen et al. Semple. Cherry et al. 1994. 2004). A positive attitude toward caregiving also is positively correlated with caregiver health (Cohen. Gold... 2002). Gallahger-Thompson & Coon. psychotherapy and counseling. Martire. & Levin. 2001). Haley. well-being.

2006]). 2006].org). Organizations include: • Alzheimer’s Association (800) 272-3900 www. Mexican American caregivers often respond better to group-based interventions offering high levels of social support (Talamantes. Xiong.. 2002). 2006). 2000). & Emery. & Fox.. support groups. 2006]. Knight. & Koschera. members of some ethnic and cultural groups may be more likely than others to view Alzheimer’s Disease as a source of shame. and Caucasian caregivers found it to be successful in reducing caregiver burden and depression and improving quality of life (Belle et al.. 2003.g. Current research shows that caregivers are frequently satisfied with the psychosocial interventions in which they participate. Ethnicity significantly affects how a family member views a disease and approaches the role of providing care for a rela- tive with dementia (Pinquart & Sörensen. levels of conflict. based on their cultural preferences and belief systems (e. treatment involves targeting problematic patterns of thinking and working with the caregiver to develop more adaptive. 2003) along with their relationships with the recipients of their care (Quayhagen et al. Cuban Americans [Argüelles & Argüelles. 2006). possibly retribution for the sins of the family or of one’s ancestors (e. delivered either individually or in a small-group format. Korean Americans [Moon. 2006]. and encouraging more frequent engagement in pleasant events (Beck.org • or your own social service department.. Schulz et al. 2006). 2006]. 2007). Lyketsos et al. In one study. Small.caregiver. & Masterson. in the case of abusive caregivers.. In California. 2005).. Recommendation: Integrate medical care with education and support by connecting patient and caregiver to support organizations for linguistically and culturally appropriate educational materials and referrals to community resources. 2000). A recent series of largescale clinical trials incorporating CBT in a multi-component intervention with Hispanic/Latino. have demonstrated success in reducing caregiver depression (Gallagher-Thompson & Coon. Silverstein. 2002).. Trejo. Chinese Americans [Wang et al. Liou. Filipino Americans [McBride. a treatment program involving psychoeducation and anger management training for caregivers who abused or neglected their elderly dependents significantly reduced strain. Belle et al. Gibson. Asian Indians [Periyakoil. 1997. Jiminez. while Vietnamese Americans typically prefer more private discussions with monks. as well as managing symptoms through relaxation.org • Caregiver Resource Centers (800) 445-8106 www.. and these reductions were maintained over a six-month follow-up period (Reay & Browne. Interventions for Culturally Diverse Caregivers Cultural differences may have strong effects on caregiver stress appraisals and coping responses (Aranda & Knight. Vietnamese Americans [Tran et al. and anxiety in both abusers and neglecters. Japanese Americans [Hikoyeda. Chinese Americans [Wang et al. and financial resources. as well as cost of care and. respite care.alz. a low-cost legal consultation may be obtained through the State’s network of Caregiver Resource Centers (www. For instance.. Familiarity with these and similar aspects of the patient’s and family’s particular culture may assist the PCP in offering appropriate services and advice to the family caregiver. & Yang. In general. 2006]. Shaw. different interventions have been found to be more or less effective with different ethnic and cultural groups and subgroups (Gallagher-Thompson et al. 1997. as well as psychological responses to stress and variables associated with utilization of services (Gallagher-Thompson & Coon.caregiver. African American. African Americans [Dilworth-Anderson. 1988). 2006. 2003). A substantial body of literature has developed to provide PCPs with practical guidelines for engaging and assisting these families. 2007). less stress-inducing alternatives. depression. Efforts should be made to get the patient and family to seek sound professional advice (Overman & Stoudemire. 2007) (see Legal Considerations section). Hmong Americans [Gerdner. & Gallagher-Thompson. Mexican Americans [Talamantes et al. indicating that their own coping skills are improved (Brodaty. 2006].g. Green. 1979). or others who can perform folk healing rituals (Tran. CaliFornia VerSion © april 2008 39 . working on problem solving.. Tran... 2006].GuiDeline for AlzheiMer’s DiseAse MAnAGeMent with a corresponding reduction in care recipient symptoms (Sörensen et al.. nuns. 2006]). As a result. Recommendations should include consultation with financial advisors and legal counsel and discussion of conservatorship (American Psychiatric Association. & Burke. 2006]. Rush. 2006]. 2006]. consultation on care needs and options. 2003). Interventions with cognitive behavioral therapy (CBT). General Legal and Financial Advice The PCP also plays a critical role in providing guidance to the family regarding the need for financial and legal advice (Ham. Mukoyama. 2006]. & McCallum. American Indians [Hendrix & Swift Cloud-Lebeau. Puerto Ricans [Montoro-Rodríguez. legal counseling. McCallum. & Hinton. For example.

for those patients who do not have family. and the patient’s abilities. writing. The perspectives of people with Alzheimer’s Disease remain under-researched. 2000. 2006). Empirical studies of diagnostic disclosure in dementia have largely focused on quantifying attitudes and practice. If a key family member is unable to attend a face-to-face information session regarding disclosure of the diagnosis. However. the PCP should identify other members of the patient’s informal support system who may be able to provide relevant history and observations or be enlisted to help monitor the patient’s treatment plan recommendations. preferably aerobic exercises if tolerated (or less-strenuous exercises that promote strength. Cultural background may influence family choice regarding disclosure (Pinner & Bouman. 2006. etc. 2003). & teri. Also.. Vitiello. 2002).. educational level. There is currently wide variability in the process of disclosing a diagnosis of Alzheimer’s Disease. progression. and maintain cognitive health: 1. treatment alternatives. a follow-up session should be scheduled to continue discussion since the information may be overwhelming at first. 2006).g. the disease prognosis. as well as effectiveness and side effects of any pharmacological treatments.. see appendix F for a safety assessment checklist). patients. Support group participation (continuous. Table adapted from Family Caregiver Alliance. cell phone usage.. & Paling. 1995). and that it may relieve both patient and caregiver anxieties (Carpenter et al. van Marum. It is often difficult for family members to discuss critical health care decisions... studies have reported that the majority of caregivers approved the decision (Bachman et al. Gibbons. and (d) respecting the wishes of the person with Alzheimer’s Disease (Feil et al. National Institute for Health and Clinical Excellence & Social Care Institute for Excellence [NICE-SCIE]. Driving evaluations at least every 6 months.and long-term planning for circumstances relating to quality of life and other matters (Bamford et al. culture. 2006. Strategies for PCPs to assist families in discussing these decisions include: (a) initiating a discussion of goals for treatment to encourage families to talk about difficult choices in advance. recommend the following non-pharmacological interventions (preferably in combination) to protect and promote continuing functioning. including an on-road test with an experienced driving specialist 7. the PCP needs to identify and communicate with that person. not time-limited) 5. treatment choices. 2003). Carpenter et al. pending his or her consent and release for communication. preferences. Fillit et al. Discuss implications with respect to work. and patients and their families will have more questions over time (American Psychiatric Association. Table P2: Checklist for Early-Stage Care Conduct regular follow-up assessments to monitor the patient’s cognitive status and abilities. Borsetti.. Physical exercise. and coordination. Programs to improve sleep.). social engagement. logsdon. driving. allowing enough time for the PCP to discuss recommendations and to answer questions (American Psychiatric Association. 2001. & Giuliani. (b) enhancing the patient’s and family’s knowledge and understanding of health care procedures and care options so that caregivers can ask more informed questions and better assess information they receive from health care professionals at different stages of the Alzheimer’s Disease process. balance. (c) helping families develop successful problem-solving strategies. Ideally. Disclosure is significant in terms of initiating the process of short.g.. 2006 with less emphasis on the process and impacts of disclosure (Bamford et al. preferably focusing on cognitive training and rehabilitation or memory rehabilitation 3. Comprehensive recreational therapies (e. 2008). Dautzenberg.. risk of falls. where disclosure has occurred. 2007. The consensus opinion of experts involved with the diagnosis and management of Alzheimer’s Disease is that a meeting with the patient and supportive family member(s) should be held when disclosing the diagnosis. and caregivers. such as tai Chi).. art.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Patient and Family: Disclosure of Diagnosis and Family Conferences It is important that disclosure of the diagnosis of Alzheimer’s Disease be handled in accordance with the wishes of the patient and family. electronic reminder and monitoring programs (if not cost-prohibitive). and expected treatment outcomes. 2007. Doody et al. and other safety issues (e. Feil et al... Cognitive therapies. for many clinicians. 2. disclosure is neither inevitable nor straightforward. computer e-mail programs. Recommendation: Discuss the diagnosis. individualized hobbies) 4. 2004. Lyketsos et al. 2007). Belardinalli. 2005) 6. assist with independence.g. van der Hammen. Post & Whitehouse. 40 CaliFornia VerSion © april 2008 . While some attitudinal studies have suggested that many caregivers do not support disclosure of the diagnosis to the person with dementia (Pucci.) 8. Lyketsos et al. individualized instruction in activities to promote independence (e.. and goals of Alzheimer’s Disease care with the patient and family in a manner consistent with their values. such as niTe-alzheimer’s Disease (McCurry.

& Zanetti. Regular re-evaluation will help determine the cognitive. & Kakos. involving them in care planning. Neri. few professionals have developed the specialized skills needed. 2003. In one study. Recent best practice guidelines for early-stage or newly diagnosed patients recommend follow-up two months after diagnosis and every six months thereafter (Fillit et al. 2007. functional performance. Recommendation: Pay particular attention to the special needs of early-stage patients.. adult day services participants with mild Alzheimer’s Disease receiving cognitive stimulation and donepezil over a one-year period improved their scores by 1. 2007). & Hodges. physical fitness. Increasingly.. such as activities provided in adult day services programs. & Teri. or behavioral effects of treatment and other management interventions. 1995. Belloi. Additionally. with qualitative and observational data suggesting that these interventions have a positive impact.. while those receiving medication only saw their scores decline (from an average of 21. Fillit et al. Patient and Family: Advance Planning for Care Needs Moderate evidence suggests that there is a lack of knowledge and understanding of end-of-life care among the general population (Silveira. balance) of exercise (Logsdon. Femia. including the Alzheimer’s Association. Recommendations should be based on thorough knowledge of the individual’s retained abilities (Lyketsos et al. and referring them to community resources.. PCPs have developed group interventions offering both support and psychotherapy. 2004).. 2007). facilitating prompt adjustments in the event of negative effects and early intervention with needed therapies to maximize quality of life (American Psychiatric Association.. 2007). 2004). Alzheimer’s Association. strength training. & Gilliard.. Young. cognitive benefits have been associated with aerobic exercises such as walking and using an exercise bicycle (Palleschi et al. McCurry. 2007). strength. and contributing opinions and expressing desires related to specific plans for the future (Vernooij-Dassen. flexibility. 2005). 2006). functional. 2005. & Ottenbacher. endurance. 2002). & Livingston. Roth. and cardiovascular measures.45).8) (Requena et al. there is at least some evidence that they may be beneficial and little reason to believe they will cause harm. Reported benefits of early-stage support groups include the opportunity to share experiences and increased social support (Zarit et al.5 points on the Mini-Mental State Exam (from an average of 22. The recommendations in Table P2 are based on the recent Consensus Report on Early Stage Alzheimer’s Dementia issued by the Alzheimer’s Association (2007a). Scheltens.17 to 17. being involved in treatment planning. 2006). Fioravanti.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Patient and Family: Early-stage Alzheimer’s Disease There is increasing expert consensus that people with early-stage Alzheimer’s Disease require a different approach to care and management than those in the moderate or advanced stages of the disease (Alzheimer’s Association. 1996. DiPiero. Abreu. people in the early stages of Alzheimer’s Disease are making their voices heard. involving either early-stage individuals only or both those affected and their care partners in parallel groups (Yale. requesting involvement in such future planning and insisting that their humanity not be abrogated by the event of their diagnosis (Alzheimer’s Association. Since Alzheimer’s Disease often progresses slowly in the early stages. 2000). While some of these recommendations have not yet been fully researched in controlled clinical trials. Gerrity. as demonstrated in studies examining both aerobic and non-aerobic forms (e.. 2004).) (see Assessment section). 2007. Wilson. Rolland et al.95 to 24. the goals of the patient (via advance directive). 2004). 2003). Psychosocial Support Early diagnosis has provided an opportunity to offer early psychosocial support directly to individuals affected by Alzheimer’s Disease. 2000). the affected individual has much to invest in improving and maintaining quality of life. End-of-life treatment options and decisions need to take into account effective pain management. Most that do exist. such services are not yet readily available in the community. Jones. Teri et al. 2004). Williams & Tappen. CaliFornia VerSion © april 2008 41 . & Feudtner. Walker. Zarit. Watson. Derksen. Stephens. use a model that includes some combination of education and supportive peer discussions. 2001). however. engaging in physical exercise has been associated with reductions in depression and improvement in mood and behavioral problems (Regan. Katona. Although studies are limited. particularly as factors such as level of awareness have been shown to affect responsiveness to certain interventions (Clare. Therefore. Although individual or group psychotherapy with a trained professional can help early-stage individuals make sense of their experiences and reduce depression (Cheston. Carter. has been shown to benefit persons with Alzheimer’s Disease more than drug therapy alone (Femia. Rice-Oeschger. and early-stage support groups are not readily available. Cognitive Stimulation Cognitive stimulation. 2006). heeding their opinions and wishes. While systematic Alzheimer’s Disease-specific memory rehabilitation programs conducted by skilled professionals have demonstrated benefits (De Vreese. it is important for the PCP to discuss endof-life treatment goals and options with patients and families early on (Kettl. and patient and caregiver satisfaction (Kettl) (see Assessment section and Treatment section). exercise has been shown to benefit cognitive performance.g. Physical Exercise Physical exercise has multiple health benefits for the person with early Alzheimer’s Disease. Zarit. & Moniz-Cook. As reported in a meta-analysis of studies of exercise programs for Alzheimer’s Disease patients (Heyn. & Greene.

2006. Moye. artificial nutrition plans. 2000. 2000). Ingram.. Siu. the PCP needs to present care options that maximize comfort and other potential benefits while avoiding futile treatments that may not provide comfort and may actually prolong the dying process. 2001). preferences. Kettl. 2005. 1999). 2001). A major barrier to completing informed consent forms. reason about. Tube feeding and hydration are often done as a matter of course for hospitalized or nursing home patients who have difficulty swallowing (Volicer. Because the law does not recognize non-blood relatives. Volicer). while the family may not only value the input of non-blood relatives but actually depend on them with regard to important decisions on treatment and other matters (Valle. Table P3: Factors to Consider in Planning for End-of-Life Care Maximize options for comfort care through hospice referral avoid futile care and prolongation of the dying process Discuss the benefits and risks of tube feeding review and simplify the patient’s medication regimen assess and respect the patient’s and family’s cultural values and preferences Table adapted from Wolf-Klein. PCPs may inadvertently discount them. Ham. Pietsch. Cassel. American Medical Association. or other community organization to identify appropriate local legal resources with experience in dealing with non-English-speaking and/ or low-literacy populations. Cody. Decisions to use tube feeding should be consistent with previously discussed care plans. 1995a. without improving patients’ nutritional status (Alvarez-Fernàndez. 2007). The PCP should also discuss values. Advance planning is also important in long-term care to help patients maintain a sense of control when they lose decisional capacity and to ensure that their preferences are followed where possible (McCullough & Wilson. Bank. and to communicate a choice of treatment. Marson. Patient and Family: End-of-life Care Decisions (Hospice and Palliative Care) As the end of the patient’s life approaches. & Meier. including donot-resuscitate orders. 1999. 2007. PCPs need to respect the decisions of patients and their proxies. & Dubler. and other legal documentation is that these documents are often written at the college or graduate school level and many patients do not understand what they say (Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs. & Azar. & Gómez-Huelgas. Blustein. and appreciate the consequences of the disease and particular course of treatment.). The PCP should refer the family to the Alzheimer’s Association. and goals related to death and dying with patients in early stages of Alzheimer’s Disease. even though their cultural beliefs or wishes may be counter to medical recommendations (Alpers & Lo. all of which decline as Alzheimer’s Disease progresses (Huthwaite et al. Martínez-Manzanares. Young.. Potkins et al. 2007. Recommendation: Discuss the patient’s need to make care choices at all stages of the disease through the use of advance directives and identification of surrogates for medical and legal decision-making. the prognosis. Chin. 2000. & Blanchette. and what course of treatment is to be expected (Overman & Stoudemire. Pekmezaris. and healthcare proxies (Karel. appointment of surrogates. “informed consent” is operationally defined as consent to a specified medical treatment given by a patient who is able to understand the exact nature of the diagnosis. Special care should also be taken to protect the rights of cognitively impaired adults through the use of advance directives and durable powers of attorney. 1997). It is especially important for there to be legal documentation of a patient’s wishes because certain cultures rely on “fictive kin” (non-blood relatives who are considered family) to make medical treatment decisions. Garrow et al. For this purpose. 1996. 2007.. Proxies should have extensive conversations with the patient about his or her wishes with respect to a variety of circumstances and situations (Alpers & Lo. & Harrell. Potkins et al. Cody. The checklist in Table P3 may facilitate this process. Marson.. Advance directives and designation of healthcare surrogates should be put in place early. Post et al. Post. Generally.. & Harrell. The PCP should provide sufficient information so that reasonably informed decisions can be made with respect to medical treatment and other matters (Lyketsos et al. as nasogastric tube feeding has been found to reduce survival and increase the risk of complications such as pneumonia and urinary tract infections. 2005). Ingram. 1988). Capacity to make medical decisions involves ability to understand. & Weiner. 2006) (see Assessment section and Legal Considerations section). tube feeding is not recommended for patients with severe dementia. 1999. Morrison. Expert opinion and Workgroup consensus suggest that PCPs should initiate conversations with patients and their families about late-stage care and appointing a proxy (Braun. Leipig. 2007 42 CaliFornia VerSion © april 2008 . Silveira et al. while the patient can still have input (American Psychiatric Association. 2000. 1995b).. 1999).GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Issues of informed consent and capacity may be among the first to arise after diagnosis when plans are being made for patients with Alzheimer’s Disease. Brock. García-Ordoñez. 1999. The initiation of a hospice protocol when swallowing becomes an issue may bring great comfort to both family members and professional staff. and help avoid the complications of tube feeding and use of medications or other restraints (Volicer). 1995. Caregiver Resource Center.

GuiDeline for AlzheiMer’s DiseAse MAnAGeMent As clinicians and families weigh the use of such aggressive treatments. 2005). the burden of treatment may become greater than its benefit to the patient (Robinson et al. Weissman. it may be permissible to discontinue the use of ongoing treatments (Rurup. Recommendation: Discuss the intensity of care and other end-of-life care decisions with the Alzheimer’s Disease patient and involved family members while respecting their cultural preferences. Ribbe. CaliFornia VerSion © april 2008 43 . or suffer some discomfort or pain from treatment. Onwuteaka-Philipsen. When patients cannot understand the purpose of treatment and need to be restrained. & van der Wal. In such a case. Pasman. 2004). 2006.. it may be helpful to consider them in the context of benefits versus burdens.

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regarding marriage and domestic partnership [California Probate Code §§810(a). • Capacity Evaluations: Use a structured approach to the assessment of patient capacity.5[a]). the patient and family are able to process the information. Managing personal and financial affairs (California Probate Code §1801). Making a contract (California Civil Code §§39-40. and courts to assist the patient to live within boundaries that constitute the least restrictive alternatives. Making a medical decision (California Probate Code §813). PCPs can use their unique position of trust and influence to find the right time in the treatment discussion to convey the importance of basic legal and financial planning and to make the appropriate referrals for professional assistance (Lyketsos et al. as well as instances of elder or dependent adult abuse.g. California Family Code §§297. 301. major legal and financial decisions ideally should be made while the patient is still capable of making them. to appropriate agencies. isolation. Nominating a conservator (California Probate Code §1810). The PCP can make clinical evaluations concerning the capacity of the patient and. attorneys. or CaliFornia VerSion © april 2008 Legal Considerations: Planning Since cognitive decline deprives Alzheimer’s Disease patients over time of the ability to think clearly. Recommendation: Include a discussion of the importance of basic legal and financial planning as part of the treatment plan as soon as possible after the diagnosis of Alzheimer’s Disease. and a particular deficit may be considered for this purpose only if it “significantly impairs the person’s ability to understand and appreciate the consequences of his or her actions with regard to the type of act or decision in question” (California Probate Code §811[b]). In other situations. abduction) to Adult Protective Services. when the patient is no longer legally capable of making particular kinds of decisions. 2006). and may be diagnosed too late to be able to make legally capable decisions. Making a conveyance (California Civil Code §§39-40. financial. Long Term Care Ombudsman. 3208) codifies standards for a court to use in determining whether a person has the capacity to perform particular acts in a variety of contexts. the PCP may be called upon to render a capacity evaluation to assist the court in determining whether the patient should be placed under a probate conservatorship.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent leGal ConSiDeRationS Overview In addition to discussing the medical and behavioral symptoms of Alzheimer’s Disease. Recommendations • Planning: Include a discussion of the importance of basic legal and financial planning as part of the treatment plan as soon as possible after the diagnosis of Alzheimer’s Disease. 3. 3201. In these circumstances. there is a legal presumption in favor of capacity (e. California Probate Code §§1881. California Probate Code §1872). Legal Considerations: Capacity Evaluations There may be times when the patient has done legal planning. Driving (California Health and Safety Code §103900).. and act on the PCP recommendations. Reporting requirements and standards and procedures for making capacity determinations may vary by state. 811[a]). and without evidence to the contrary. • Driving: Report the diagnosis of Alzheimer’s Disease in accordance with California law. PCPs are required by law to report the diagnosis of Alzheimer’s Disease. the patient may not have done advance legal planning. The California Due Process in Competence Determination Act (DPCDA) (California Probate Code §§810-813. but a capacity declaration is required before the patient’s chosen substitute decision maker can be authorized to act on the patient’s behalf. should provide guidance to families. the Primary Care Practitioner (PCP) should also convey the importance of basic legal and financial planning and make the appropriate referrals when formulating treatment plans. 5. 3204. 4. The following structured approach should be taken when determining capacity under DPCDA: Step 1: Determine whether the decision or act in question is one of those listed below: 1. 7. recognize the need. being aware of the relevant criteria for particular kinds of decisions. • Elder Abuse: Monitor for evidence of and report all suspicions of abuse (physical. neglect. sexual. 6. 1900]). or the local police department. 2. Mere diagnosis of Alzheimer’s Disease is not enough (California Probate Code §811[d]). as required by law. abandonment. the recommendations below are for the State of California. The determination of incapacity must be based on evidence of a deficit in one or more specific functions (California Probate Code §§810[c]. The PCP should monitor for abuse as well as offer interventions to the patient and caregiver through medical treatment and referrals to community agencies.. Making a testamentary disposition. California Probate Code §1872). including creating or revoking a trust (California Probate Code §6100. It may be necessary to introduce this discussion more than once before 45 .

§164. In situations where a patient with Alzheimer’s Disease needs to be placed in a secured-perimeter residential care facility for the elderly or in a secured skilled nursing facility that specializes in the care of persons with Alzheimer’s Disease.F.” (45 C. §164. Recommendation: Use a structured approach to the assessment of patient capacity.65). then the PCP must complete a capacity declaration for the patient.R. drawing upon his or her training and experience. he or she may be particularly vulnerable to fraud and undue influence. or gesturing—is required to satisfy the presumption of capacity (California Probate Code §811[a]). Step 4: If the communication standard is satisfied. a PCP making such a report may disclose protected health 46 CaliFornia VerSion © april 2008 . The Capacity Declaration-Conservatorship form (Judicial Council Form GC-335. Under HIPAA. In addition.570. writing.R.102-164. there is no physicianpatient privilege (California Evidence Code §1004). being aware of the relevant criteria for particular kinds of decisions. the DPCDA provides that apart from the specific functional tests regarding management of personal and financial affairs and driving. PCPs may not use or disclose “protected health information” except as HIPAA permits (45 C. Health Insurance Portability and Accountability Act of 1996 (HIPAA) (45 C. see Appendix G) must be completed as well. For instance. In conservatorship proceedings.R. a conservator of the person. and/or (b) that the patient would benefit from the administration of appropriate medications for Alzheimer’s Disease but is incapable of giving consent (California Probate Code §2356.5) (Judicial Council Form GC-335A. if any. keeping in mind that mere diagnosis does not affect the presumption. then capacity cannot be established.gov.F.502[a]).512[i][1][i]).17) (see Appendix G).37). see Appendix G).F. identify the patient’s cognitive deficits (as listed in California Probate Code §811[a]) and determine whether they affect the specific act or decision in question. Step 2: Apply the rebuttable presumption in favor of capacity. drawing. then the Dementia Attachment to Capacity Declaration-Conservatorship (Judicial Council Form GC-335A. see Appendix G) is a multipurpose form required in any proceeding for conservatorship in which the petitioner alleges that the proposed conservatee either: (a) will be unable to attend the conservatorship hearing (California Probate Code §1825[b]). and whether there is significant impairment of ability to understand and appreciate the consequences of that action.5). Form GC-335 is also used to submit evidence of mental function deficits when required (California Probate Code §811[a]).S. If the person cannot or refuses to communicate as needed in order to perform a specific action. Step 3: Apply the applicable communication standard.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent 8. HIPAA allows disclosure to “a government authority authorized by law to receive such reports. Step 5: Determine whether undue influence has or may have been used. If the patient is being assessed for the purpose of determining whether or not a conservatorship is necessary. Legal Considerations: Elder Abuse PCPs must report all known and suspected instances of physical abuse to law enforcement authorities (California Welfare and Institutions Code §15610. Even in proceedings for which Form GC-335 is not required. §164. such as a protective services agency…. the evidence it calls for can be very helpful in establishing the need for a conservatorship.101-160. and may be used with the Petition for Exclusive Authority to Give Informed Consent to Medical Treatment (California Probate Code §1891) (Judicial Council Form GC-380.ca. the PCP making the capacity evaluation is required to make additional findings: (a) that the patient would benefit from the secured placement and that it would be the least restrictive placement appropriate to his or her needs. The applicable standard is “reasonable suspicion. §§160. Even if the patient is found to have capacity to make a particular decision.F. see Appendix G) or Petition for Authority to Place Conservatee in a Locked Facility and/or Consent to the Administration of Medications (California Probate Code §2356. The form is intended to make the written assessment of capacity easier for the PCP by allowing boxes to be checked to record impressions of the conservatee’s mental abilities and by making it unnecessary for the PCP to testify in court as to the proposed conservatee’s abilities. Judicial Council Forms are available for download at www. If the proposed conservatee has dementia. Authorizing release of “protected health information” under the U.534) or the California Confidentiality of Medical Information Act (CMIA) (California Civil Code §§56-56. 164. the ability to engage in some form of communication—speaking. to suspect abuse (California Welfare and Institutions Code §15610.” which means that the facts and circumstances in question could cause a reasonable person in a like position. is entitled to be treated as the patient (45 C.R.502[g][i][2]) for purposes of disclosure. (b) lacks the capacity to give informed consent to medical treatment (California Probate Code §1890[c]). as well as the agent named in an advance health care directive who has power to make healthcare decisions for the conservatee.courtinfo. and that fact should be noted in the PCP’s written assessment. or when a patient would benefit from appropriate medication for Alzheimer’s Disease but is unable to give informed consent. or (c) has dementia. under HIPAA.

personal interviews. as required by law. 2007). as mandated reporters.dmv. Phillips. California DMV personnel evaluate the driver individually using medical evaluations. 1997). & Berbig. PCPs. and other impairments associated with Alzheimer’s Disease increase the risks of driving.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent information about an individual whom he or she reasonably believes to be the victim of abuse (45 C. The cognitive. neglect. sexual. Thus. PCPs may report instances of emotional or financial abuse to Adult Protective Services. 1993. abandonment. The California Medical Board must obtain an acknowledgement from every PCP that he or she understands and agrees to comply with the dependent and elder abuse reporting statutes (California Welfare and Institutions Code §15659[d]-[e]). and HIPAA’s “minimum necessary rule” does not apply to these disclosures (45 C. supportive psychotherapy. Reichman. and even mild Alzheimer’s Disease should trigger careful consideration of the patient’s ability to continue operating a motor vehicle (Lyketsos et al. §§160. 1993). Fitten. 1995). §164. There is evidence that certain patient attributes (e. Effective interventions include assessing caregivers for depression and perceived burden and offering psychopharmacological treatment. 2006). cognitive or functional impairment and physical dependence) may be predictors of risk for violence in Alzheimer’s Disease families.203. financial. Title 17 §§2800-2812) (see Appendix G). & Koff. Patients with moderate and severe dementia should not be driving (Dubinsky. 2002) (see Assessment section). 2002). Gwyther.cahwnet.R. 2000. dss.ca.F. After receiving the report. isolation.. The obligation of the PCP is to provide support and referrals to both patient and caregiver and to intervene appropriately if abuse is suspected. support and education groups. or the local police department. but also to the patient’s behavioral symptoms. & Lyons. visual-spatial. Legal Considerations: Driving The PCP is required to report a diagnosis of Alzheimer’s Disease in accordance with California law (California Health and Safety Code §103900. California law punishes PCPs who fail to report a known or suspected incident of abuse. The Long Term Care Ombudsman will also accept such reports if the patient is in a long-term care facility such as a nursing home or residential care facility.g. CaliFornia VerSion © april 2008 47 . Long Term Care Ombudsman. abduction) to Adult Protective Services. California Penal Code §11166. The prevention and treatment of elder abuse focuses on intervention with caregivers to mitigate caregiver burden and stress. 164. The Report of Suspected Dependent Elder Abuse Form (SOC 341) is available for download at http://www.. Mutual violence (where abuse is seen both in terms of caregivers directing abusive behavior towards patients and patients abusing caregivers) may also be a concern (Coyne et al.F.512[c][1]).gov Recommendation: Report the diagnosis of Alzheimer’s Disease in accordance with California law. which may be a reaction to a disturbing or dangerous situation in his or her environment (Warshaw. are immune from civil and criminal liability for reporting abuse or suspected abuse unless it is proven that the report was false and the PCP knew the report was false (California Welfare and Institutions Code §15634[a].R.. and the punishment is greater if the abuse results in death or severe bodily injury (California Welfare and Institutions Code §15630). Reay & Browne.502[b][2][v]). The Request for Driver Re-evaluation form (DS 699) and the Driver Medical Evaluation form (DS 326) are available for download at http://www. and it is especially hard to obtain information from a patient who is functionally or cognitively impaired. 1992). Stein. Paveza et al. The major challenge in identifying elder abuse is that it may not assume easily identifiable patterns. and other information when indicated to determine his or her driving ability. and respite services to alleviate caregiver burden (Coyne. which are seen as risk factors for abuse (Friedman & Newberger..gov Recommendation: Monitor for evidence of and report all suspicions of abuse (physical. The statute provides that a physician shall not be civilly or criminally liable to any patient for making any report that it requires or authorizes (California Health and Safety Code §103900[f]).01). Monitoring should include being alert not only to patient and caregiver circumstances. the health care team has the responsibility to monitor and intervene where required (American Psychiatric Association. and that caregiver depression and living arrangements as well as other factors are associated with both verbal and physical abuse (Reay & Browne. California Code of Regulations.

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R.. Is caregiving hazardous to one’s physical health? A meta-analysis. Ancoli-Israel. (2007). E. J.). J. Alzheimer’s Care Quarterly. Y. randomized. (2004). (2006). Yau. K. K.... & Persad. R. P.. 713-726. Medical issues in late-stage dementia. N.. Newcomer.) Washington. T. Cochrane Database of Systematic Reviews. G. W. Gilley. 24. M.. J.. Psychology and Aging.. Art. 77-82. 292. J. 4-7.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Vernooij-Dassen. (2002). Music therapy for people with dementia. International Journal of Geriatric Psychiatry. D. 129.. R. Cummings.. V. 166-172. Jones. Providing care for the caregiver. Young.. American Journal of Public Health. 60 CaliFornia VerSion © april 2008 .. P. Ethnicity and the dementias (2nd ed.. (2003). DC: Taylor and Francis. Patterson. M. L. Vitaliano. 68-86. B. Sadowsky. M. 5. (1995). Orrell. 13. J. A. Human Psychopharmacology.CD001120. B... C. (2002). & Hurley. Dimsdale. P. (2003). L. NY: Guilford Press. S. DOI: 10. A... and cognitive decline in Alzheimer’s Disease. Grossberg. 58A. 397-410. Femia.. L. B. The person with Alzheimer’s Disease: Pathways to understanding the experience (pp...-Q. G. K. 6. McCann. Patient Care. Von Kanel. R. Working with Chinese American families. C. Viggo Hansen. New York.. Issue 2.. Zhang. MD: The Johns Hopkins University Press. E. 35.-C. Williams. 946-972. 963-969. 20. C-Reactive Protein. Issue 4. No.. S. M. et al. P. Subjective hypnotic efficacy of trazodone and zolpidem in DSMIII-R primary insomnia. & Koff. Q... 837-845. & Wei. (1996). NY: Routledge/Taylor & Francis Group.CD004989. W. Wu.. L.. Vickrey. J. E.. S. D. A. Yale. 456-467. Woods. Andreasen. Derksen. 1738-1743. B. day care use.. C. C. Gallagher-Thompson (Eds. Pekmezaris. Family Medicine. Journal of the American Medical Association. D.: CD004989. American Journal of Psychiatry. Williams. F. R. AZ: University of Arizona Health Sciences Center Press. 22. T. Winslow. Liang... Alzheimer’s Disease: An overview of primary care. R. 2216-2221. H. & Gallagher-Thompson. B. G...pub2. & Weiner.. American Journal of Alzheimer’s Disease & Other Dementias. (2001). What works for whom? A critical review of psychotherapy research (pp. Tong. 158. L. D. Long.. implementation and evaluation. 189-198. M.. Mills. L. Schneeweiss. L. B. & Moniz-Cook.. T. Watson. D.. I. T. T. 44. Jamieson.. B. No. (Eds)... W. The Gerontologist. B. Mahowald. Solomon.. Effectiveness of psychological interventions with older people. Zarit.1002/14651858. 353. B. (2004). Developing support groups for individuals with early stage Alzheimer’s disease: planning. V. 29-34. J. Birks. (2006). R. T. Procedures for identifying evidence-based psychological treatments for older adults... S. M. Liu. Wang. Memory club: A group intervention for people with early-stage dementia and their care partners. Fischer. Erman. 34. 330-340). Relationship of functional health literacy to patients’ knowledge of their chronic disease. M. et al. R. G.: CD003477.. 97.. M. Archives of Internal Medicine. Connor. Woods. Cochrane Database of Systematic Reviews.. E.. P. Decision making at a time of crisis near the end of life. S. 191-198.. (2005). & Scholten.: CD001120. & Evans.. Dane. M. Plassman. S. Nursing home placement.. Wright.. Management of behavioral symptoms in progressive degenerative dementias. Li. Issue 4. J.. J. 20. Art.. CD003477. (2007). S. D. Fox.. (2007). T. A.pub2.. No. Y. DOI: 10. (2002). et al. Davis. L. Roth & P. 341-348.. (1995). N.. Avorn...) (pp.. H. et al. 2090-2097. A.. P. & Tappen. Yon. A six-month double-blind. Reminiscence therapy for dementia. Onofrj. A. H. MD: Health Professions Press.. atypical antipsychotic medications.. & Scogin. R. 262-269. Gwyther. (2005). P. Della Penna. American Journal of Hospice & Palliative Medicine. Bruinsma.. Volicer. Erwin.. Parker. Massage and touch for dementia. Journal of Gerontology. S.. J. P. New York. London and Baltimore. Patient and caregiver characteristics and nursing home placement in patients with dementia. & Roth. J. Jørgensen. (2006). L. Fonagy (Eds.pub2. & Davies.1002/14651858... Art. J. M. Phillips. (2003). Yaffe. In A. M. Distinguishing between depression and dementia in older persons: Neuropsychological and neuropathological correlates. Wilson. (1998). 910-915. Walsh. C. C. Yeo & D. Wang. placebo-controlled study of a transdermal patch in Alzheimer’s Disease— rivastigmine patch versus capsule. Family caregivers’ experiences with community services: a qualitative analysis. M. M. (2005). (2006).. Effect of Alzheimer caregiving stress and age on frailty markers Interleukin-6. Journal of Gerontology. R.. Weissman. Ethnicity and the dementias (2nd ed. et al.. J. L.). 164. Risk of death in elderly users of conventional vs. J. 389-397. 383-389. L. Volicer. Regestein. New England Journal of Medicine. S. Aggarwal. (2007). Conceptualizing Alzheimer’s Disease as a terminal medical illness. R.. Psychological Bulletin. D. (2007). (2007). 22. C. Public Health Nursing. H.. Baker. (2003)... Leung. JAMA. Harris (Ed. B. Dementia. E. et al. N. Effect of exercise on mood in nursing home residents with Alzheimer’s Disease. Moqun.. Scheltens. (2007). Ganiats. Mausback. W. Chin. Warshaw. Vink. The effect of a disease management intervention on quality and outcomes of dementia care: A randomized. E. Young. In P. Receiving a diagnosis of dementia: The experience over time. Winblad. R. (2006). & Parker. L. M. & Scanlan. and D-Dimer. L. K.. L. K. (1998). 287. L. et al. (2006). Medical experiences and concerns of people with Alzheimer’s Disease. D. Baltimore.. Yeo.. S.. L. 2335-2341. A. Wolf-Klein. M. Pearson. S. controlled trial. & Ørtenblad. Rice-Oeschger. Williams. In G. M. Annals of Internal Medicine. & Kakos. The role of health literacy in patient-physician communication.1002/14651858. B. 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Hai. CaliFornia VerSion © april 2008 61 .. Minkwitz. 857-866. P. Journal of Music Therapy. G. Zubenko. M. R. A. B.GuiDeline for AlzheiMer’s DiseAse MAnAGeMent Zarit. N. S. A. doubleblind. Stress reduction for family caregivers: effects of adult day care use. MD: Johns Hopkins University Press. M. (1999). (2003).. W. Stephens. N. Townsend. 329-343.. S. Zgola. C. McPherson.. X. & Haimov. I. Current Alzheimer Research. Zhong.. & Devine. et al. S267-S277. Journals of Gerontology. K. E. (2007). H. Ziv. S... Zubenko. A. D. Tariot. 44. Mintzer. S. 160. a collaborative study of the emergence and clinical features of the major depressive syndrome of Alzheimer’s Disease.. N. (1998).. M. The effect of background stimulative music on behavior in Alzheimer’s patients. Granot. R. Dassa.... Quetiapine to treat agitation in dementia: a randomized. 81-93. 53B... & Greene. 4. Spoor. Marin.. J. (2007). Care that works: A relationship approach to persons with dementia. Farlow. Baltimore. American Journal of Psychiatry. A. M. A. placebo-controlled study. N...

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Appendix A Functional Assessment Tools .

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strokecenter. dressing. can sit 10 = minor help (verbal or physical) 15 = independent MOBILITY (ON LEVEL SURFACES) 0 = immobile or < 50 yards 5 = wheelchair independent. carrying aid) 10 = independent ______ ______ ______ ______ ______ ______ ______ ______ ______ ______ TOTAL (0–100): ______ Provided by the Internet Stroke Center — www. including corners. for example. zips.org . etc. or catheterized and unable to manage alone 5 = occasional accident 10 = continent TOILET USE 0 = dependent 5 = needs some help.THE BARTHEL INDEX Activity Patient Name: Rater Name: Date: ___________________________ ___________________________ ___________________________ Score FEEDING 0 = unable 5 = needs help cutting. > 50 yards 10 = walks with help of one person (verbal or physical) > 50 yards 15 = independent (but may use any aid. no sitting balance 5 = major help (one or two people.) BOWELS 0 = incontinent (or needs to be given enemas) 5 = occasional accident 10 = continent BLADDER 0 = incontinent. physical). etc. or requires modified diet 10 = independent BATHING 0 = dependent 5 = independent (or in shower) GROOMING 0 = needs to help with personal care 5 = independent face/hair/teeth/shaving (implements provided) DRESSING 0 = dependent 5 = needs help but can do about half unaided 10 = independent (including buttons. stick) > 50 yards STAIRS 0 = unable 5 = needs help (verbal.. but can do something alone 10 = independent (on and off. laces. physical. wiping) TRANSFERS (BED TO CHAIR AND BACK) 0 = unable. spreading butter.

” Stroke. Provided by the Internet Stroke Center — www.org . Barthel D. not as a record of what a patient could do. Permission is required to modify the Barthel Index or to use it for commercial purposes.14:56-61. It may be used freely for noncommercial purposes with the following citation: Mahoney FI. 7.” Maryland State Medical Journal 1965.The Barthel ADL Index: Guidelines 1. Used with permission. 6. 1980. References Mahoney FI. “The Barthel ADL Index: a reliability study. However direct testing is not needed.” Maryland State Med Journal 1965. “Functional evaluation: the Barthel Index. Copyright Information The Maryland State Medical Society holds the copyright for the Barthel Index. The index should be used as a record of what a patient does. Davies S.61:355-358. Anderson BA. Asking the patient. “ADL status in stroke: relative merits of three standard indexes.21:78-81. but direct observation and common sense are also important. however minor and for whatever reason. Usually the patient's performance over the preceding 24-48 hours is important. 5. Phillips TF.1988. Labi ML. Loewen SC. Middle categories imply that the patient supplies over 50 per cent of the effort. physical or verbal. Gresham GE. friends/relatives and nurses are the usual sources.strokecenter. Wade DT. Collin C. 3. 2. Barthel D. Horne V. 4. Used with permission. The main aim is to establish degree of independence from any help.” Int Disability Study.14:56-61. “Functional evaluation: the Barthel Index. but occasionally longer periods will be relevant.10:61-63. 1990. The need for supervision renders the patient not independent. Use of aids to be independent is allowed. “Predictors of stroke outcome using objective measurement scales. A patient's performance should be established using the best available evidence.” Arch Phys Med Rehabil.

ign@nyu. Critical care nursing for older adults: Pathophysiological and functional considerations. PhD. H.R. it is limited in its ability to measure small increments of change seen in the rehabilitation of older adults. BC. managing finances and telephoning. This material may be downloaded and/or distributed in electronic format.. In M. D. AJN. this material in its entirety only for not-for-profit educational purposes only. when baseline measurements. 31(12). TARGET POPULATION: The instrument is most effectively used among older adults in a variety of care settings. Although the Katz ADL Index is sensitive to changes in declining health status. Fulmer. BC. Clinicians typically use the tool to detect problems in performing activities of daily living and to plan care accordingly. Abraham (Eds. & Ackerman. provided that The Hartford Institute for Geriatric Nursing. MSN. BEST TOOL: The Katz Index of Independence in Activities of Daily Living. commonly referred to as the Katz ADL.edu. continence. download. C. The Katz ADL Index is very useful in creating a common language about patient function for all practitioners involved in overall care planning and discharge planning. ARNP. Permission is hereby granted to reproduce. Assessment of function. 106(1). GNP Managing Editor: Sherry A. Katz.org.M. Zwicker (Managing Ed. it has been modified and simplified and different approaches to scoring have been used. & Grotz.. D. is the most appropriate instrument to assess functional status as a measurement of the client’s ability to perform activities of daily living independently. VALIDITY AND RELIABILITY: In the thirty-five years since the instrument has been developed. and/or distribute. GNP New York University College of Nursing Katz Index of Independence in Activities of Daily Living (ADL) By: Meredith Wallace.hartfordign. MORE ON THE TOPIC: Best practice information on care of older adults: www. I. toileting. (2003). Cash. Katz. The Index ranks adequacy of performance in the six functions of bathing. S. 721-726. Katz developed another scale for instrumental activities of daily living such as heavy housework. Greenberg.. A full comprehensive geriatric assessment should follow when appropriate. Revised 2007 Series Editor: Marie Boltz. The Gerontologist. dressing. allowing the nurse to intervene appropriately. M. Inc. (1983).). T. A score of 6 indicates full function. & Mezey. APRN. shopping. Fairfield University School of Nursing. (2004. 473-93.org and/or www. M.ConsultGeriRN. . College of Nursing. NY: Springer Publishing Co. and Mary Shelkey. However. the tool is used extensively as a flag signaling functional capabilities of older adults in clinical and home environments. New York University is cited as the source. Down. D. 4 indicates moderate impairment. PhD. 39(3).H. transferring. Assessing self-maintenance: Activities of daily living... Although no formal reliability and validity reports could be found in the literature. 58-67. Mezey. Functional decline in hospitalized older adults. it has consistently demonstrated its utility in evaluating functional status in the elderly population. taken when the client is well.. Clients are scored yes/no for independence in each of the six functions. PhD. S. E-mail notification of usage to: hartford. (2006). and 2 or less indicates severe functional impairment. pp 31-46). Virginia Mason Medical Center WHY: Normal aging changes and health problems frequently show themselves as declines in the functional status of older adults.J. R.. are compared to periodic or subsequent measures. Sept). Geriatric nursing protocols for best practice (2nd ed. One of the best ways to evaluate the health status of older adults is through functional assessment which provides objective data that may indicate future decline or improvement in health status.org. Available on the internet at www. APRN. Kresevic. BC. and feeding. STRENGTHS AND LIMITATIONS: The Katz ADL Index assesses basic activities of daily living. It does not assess more advanced activities of daily living. T.ConsultGeriRN. Mick.).C.Issue Number 2.D. Nursing Clinics of North America. APRN. including PDA format. mobility and instrumental activities of daily living. Decline may place the older adult on a spiral of iatrogenesis leading to further health problems. JAGS. Graf. 20-30. 10(1). post. (1970) Progress in the development of the index of ADL.

10(1). direction or personal BATHING POINTS:___________ WITH supervision.C. TOTAL POINTS = ______ 6 = High (patient independent ) 0 = Low (patient very dependent ) Slightly adapted from Katz.ConsultGeriRN. Mechanical from bed to chair or requires a transferring aides are acceptable.. S.ign@nyu. direction.Katz Index of Independence in Activities of Daily Living ACTIVITIES POINTS (1 OR 0) assistance INDEPENDENCE: (1 POINT) DEPENDENCE: (0 POINTS) NO supervision.org CONSULTGERIRN WEBSITE : www. (0 POINTS) Needs partial or total help with feeding or requires parenteral feeding.edu HARTFORD INSTITUTE WEBSITE : www. (1 POINT) Goes to toilet. T. DRESSING POINTS:___________ (1 POINT) Gets clothes from closets (0 POINTS) Needs help with dressing and drawers and puts on clothes and self or needs to be completely outer garments complete with dressed. fasteners. cleaning self or uses bedpan or commode. (0 POINTS) Is partially or totally incontinent of bowel or bladder. Preparation of food may be done by another person.. (0 POINTS) Needs help with bathing more than one part of the body. R.R. 20-30. Cash. May have help tying shoes. Down. The Gerontologist. cleans genital area without help. Requires total bathing. genital area or disabled extremity. getting in or out of the tub or shower. H. personal assistance or total care (1 POINT) Bathes self completely or needs help in bathing only a single part of the body such as the back.D. CONTINENCE POINTS:___________ FEEDING POINTS:___________ (1 POINT) Gets food from plate into mouth without help. A SERIES PROVIDED BY The Hartford Institute for Geriatric Nursing EMAIL : hartford. complete transfer. TOILETING POINTS:___________ TRANSFERRING POINTS:___________ (1 POINT) Moves in and out of bed or (0 POINTS) Needs help in moving chair unassisted. gets on and off.org . arranges clothes. Copyright © The Gerontological Society of America. (0 POINTS) Needs help transferring to the toilet. Reproduced [Adapted] by permission of the publisher.hartfordign. (1970) Progress in the development of the index of ADL.. (1 POINT) Exercises complete self control over urination and defecation. & Grotz.

Appendix B Cognitive Assessment Tools .

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R.org. et al. APRN. This material may be downloaded and/or distributed in electronic format. CLOX: An executive clock drawing task. M. Successful recall of all three items is classified as non-demented. (1989). S. this material in its entirety only for not-for-profit educational purposes only.. CRNP. S. The Clock Drawing component of the test is scored as normal or abnormal. Falls Church. College of Nursing. Cholinesterase inhibitors show less effectiveness initiated later in disease course. 16(2). New York University is cited as the source. J.from Issue Number 3. Prevalence of Alzheimer ’s disease in a community population of older persons: Higher than previously reported. & Scherr. Borson. Scanlan. Those individuals able to recall one or two of the items are classified based on the CDT. Its accuracy in heterogeneic groups may increase the identification of dementias in populations less diagnosed. medications may slow disease progression. Carolan Doerflinger.. M.hartfordign.. P.P. International Journal of Geriatric Psychiatry.P. Borson. Early diagnosis allows the person to plan for the future. The scoring algorithm is as follows: Unsuccessful recall of all three items after the CDT distractor is classified as demented. S.. The Mini-Cog is not influenced by education.. J. The Mini-Cog: A cognitive ‘vital signs’ measure for dementia screening in multi-lingual elderly.. MORE ON THE TOPIC: Best practice information on care of older adults: www. & Ganguli.. Scanlan. This would increase complexity and training requirements. M. (2006). PhD. Assessment using the Mini-Cog was perceived as less stressful to the patient than other longer mental status tests. & Borson. Watanabe. 15(11).. JAGS. 53(5). Clinicians may use the tool to assess a person’s registration. BEST TOOL: The Mini-Cog exam is composed of three item recall and the Clock Drawing Test (CDT). J. J. including PDA format.. Simple. This tool has strong predictive value in multiple clinical settings (Borson. download. 262(18). Borson. post. and Psychiatry. Funkenstein. et al. Royall. 21(4). Improving identification of cognitive impairment in primary care. Watanabe.001). APRN.. Some researchers suggest the clock drawing tool should be scored to quantify impairment. This tool can be used to detect dementia quickly and easily in various settings. BC. One in 10 individuals over 65 and nearly half of those over 85 are affected (Evans. Cordes. 51(10). Chen. culture or language. for the purpose of the Mini-Cog. Tu. 2003). Brush. MSN. S.ign@nyu.org and/or www. The Mini-Cog has sensitivity ranging from 76-99%. 588-594.. VALIDITY AND RELIABILITY: The Mini-Cog was developed as a brief screening tool to differentiate patients with dementia from those without dementia.ConsultGeriRN. M.. (2005). Evans. JAGS. Increasing age is the greatest risk factor for Alzheimer’s disease.3 for other dementias (p<0.. 349-355. P. et al. PhD. E-mail notification of usage to: hartford. GNP New York University College of Nursing Mental Status Assessment of Older Adults: The Mini-Cog By: Deirdre M. (2001). short training is required to perform the Mini-Cog accurately. Scanlan.. JAMA. and specificity ranging from 89-93% with 95% confidence interval. 216-222.ConsultGeriRN. . The Mini-Cog: Receiver operating characteristics with expert and naïve raters. Scanlan. Greenberg. 1451-1454. Simplifying detection of cognitive impairment: Comparison of the Mini-Cog and Mini-Mental State Examination in a multiethnic sample. Tu. & Lessig. 2000. 1021-1027. The Mini-Cog as a screen for dementia: Validation in a population-based sample.M. 1989). & Dokmak. (2003). & Lessig. (2000). Albert. Neurosurgery. International Journal of Geriatric Psychiatry. Borson. N.. J. The advent of treatment for dementing illness necessitates the early identification of cognitive impairment using a reliable and valid tool which can be quickly implemented in the primary care setting. M. Available on the internet at www. J. Virginia WHY: There is increased incidence of cognitive impairment with age. 871-874. either during routine visits or hospitalization. Vitallano.edu. Borson. BC. An abnormal CDT equates with demented and a normal CDT is considered normal and equates with non-demented (Borson.. culture and literacy levels. S. A. International Journal of Geriatric Psychiatry. recall and executive function. D. H. delay functional dependency and nursing home placement. S. provided that The Hartford Institute for Geriatric Nursing. 2007 Series Editor: Marie Boltz. S. A chi square test reported 234. et al.. & Polk.M..M. increasing minority participation in research and improving parity of early treatment.A. 64(5). Scanlan.M.. (1998).. M. Permission is hereby granted to reproduce. TARGET POPULATION: The Mini-Cog is appropriate for use in all health care settings..4 for Alzheimer’s dementia and 118. 2000). Inova Fairfax Hospital. Journal of Neurology. D. STRENGTHS AND LIMITATIONS: The Mini-Cog takes about 3 minutes to administer. S. J. J.M. 2552 – 2556. GNP Managing Editor: Sherry A.. and/or distribute. It is appropriate to be used with older adults at various heterogeneous language.org.

Patients recalling none of the three words are classified as demented (Score = 0). Copyright John Wiley & Sons Limited. SCORING Give 1 point for each recalled word after the CDT distractor.. 1.org . Normal = non-demented) Note: The CDT is considered normal if all numbers are present in the correct sequence and position. & Dokmak. International Journal of Geriatric Psychiatry. 2. S. After the patient puts the numbers on the clock face. et al. Mini-Cog NON-DEMENTED From Borson. Brush. A. M. either on a blank sheet of paper or on a sheet with the clock circle already drawn on the page. Ask the patient to repeat the 3 previously stated words. ask him or her to draw the hands of the clock to read a specific time. 15(11). Scanlan.org CONSULTGERIRN WEBSITE : www. A SERIES PROVIDED BY The Hartford Institute for Geriatric Nursing EMAIL : hartford.The Mini Cog ADMINISTRATION The test is administered as follows: 1.edu HARTFORD INSTITUTE WEBSITE : www. MINI-COG 3-Item Recall=0 3-Item Recall=1-2 3-Item Recall=3 DEMENTED NON-DEMENTED CDT Abnormal CDT Normal Fig... J. and the hands readably display the requested time.ConsultGeriRN.hartfordign. p 1024). Reproduced with permission. Vitallano. Instruct the patient to draw the face of a clock. Patients recalling all three words are classified as non-demented (Score = 3) Patients with intermediate word recall of 1-2 words are classified based on the CDT (Abnormal = demented. The Mini-Cog: A cognitive ‘vital signs’ measure for dementia screening in multi-lingual elderly. Instruct the patient to listen carefully to and remember 3 unrelated words and then to repeat the words.ign@nyu. DEMENTED scoring algorithm (Borson. P. 1021-1027. 3.. (2000).

___________. tell me about what time it is. Fuld P. 3. prompt for specific response) (within 1 hour) _______ Actual time: _____________ Correct (0) Incorrect (1) 4. Repeat the name and address I asked you to remember. 1983. ________ Check correct items 0 1 2 3 4 5 Errors USE ATTACHED SCORING GRID & NORMS 1 Katzman R. Chicago John Brown. Count aloud backwards from 20 to 1 0 1 2 Errors (Mark correctly sequenced numerals) If subject starts counting forward or forgets the task. Schechter R. one error should be scored (Mark correctly sequenced months) D N O S A JL JN MY AP MR F J 0 1 2 Errors 6. Chicago (underline words repeated correctly in each trial) Trials to learning________(can’t do in 3 trials = C) Good.” 1. now remember that name and address for a few minutes. Brown T.Patient: ________________ Age: ___________ DATE:____________ Short Blessed Test (SBT)1 “Now I would like to ask you some questions to check your memory and concentration. ___. 42 Market Street. 42 Market Street. ______. 9 8 7 6 5 4 3 2 1 Say the months of the year in reverse order. Validation of a short orientation-memory concentration test of cognitive impairment. 42 Market Street. Some of them may be easy and some of them may be hard. Schimmel. What year is it now?______________ Correct (0) Correct (0) Incorrect (1) Incorrect (1) 2. Peck A. H. What month is it now?_____________ Please repeat this name and address after me: John Brown. (The thoroughfare term (Street) is not required) (John Brown. (If response is vague. Chicago) _____. Without looking at your watch or clock. Am J Psyhciatry 140:734-739. repeat instructions and score one error 20 19 18 17 16 15 14 13 12 11 10 5. . If the tester needs to prompt with the last name of the month of the year. 42 Market Street. Chicago John Brown.

The instructions should be read as written. This indicates the subject could not learn the phrase in three tries. tell me about what time it is? This is scored as correct if the time given is within plus or minus one hour.g. What is the year? Acceptable Response: The exact year must be given. they should be prompted to give a more specific response. Counting. the instructions should be repeated and one error should be recorded. The address number must be exact (i. Repeat. 7. Leaving off “drive” or “street”) or to be correct (ie. If the subject starts saying the months forward during the task or forgets the task. Washington University School of Medicine. To get the subject started.. Without looking at your watch or clock. a “C” should be recorded. MD. The clinician should state: “I will give you a name and address to remember for a few minutes. If the subject skips a month. however. 8.edu). 12 for December). If the subject starts saying the months forward upon initiation of the task.” It is important for the clinician to carefully read the phrase and give emphasis to each item of the phrase. Listen to me say the entire name and address and then repeat it after me. one error should be recorded. Whether or not the trial phrase is learned. Substituting “boulevard” or lane”) for the item to be scored correct. 2 These guidelines and scoring rules are based on the administration experience of faculty and staff of the Memory and Aging Project. morrisj@abraxas. the examiner may prompt this test with “December”. Louis (John C. Morris.” 4.. Use the table on the next page to calculate each weighted score and sum for the total. Alzheimer’s Disease Research Center.edu or call 314-286-2881. Director & PI. 3. the instructions should be repeated and no error recorded. please visit our website: http://alzheimer. The subject should state each item verbatim. The maximum number of errors is two. There should be a one second delay between individual items. A correct numerical answer is acceptable (e. If the subject’s response is vague (e.. an error should be recorded. The instructions should be read as written. the instructions should be repeated and one error recorded. the clinician should instruct “Good. If the subject starts counting forward during the task or forgets the task. . “4200” would be considered an error for “42”). The final score is a weighted sum of individual error scores. 5. “almost 1 o’clock). For more information about the ADRC. 01 for 2001). an error should be recorded. the thoroughfare term is not required to be given (ie.g. The last month of the year is________________. What is the month? Acceptable Response: The exact month must be given. If the subject skips a number after 20. The maximum number of errors is two. Market Street).Short Blessed Test (SBT) Administration and Scoring Guidelines2 A spontaneous self-correction is allowed for all responses without counting as an error. 6. 1.wustl.g. St. An incomplete but correct numerical response is acceptable (e. the examiner may state “Start with the last month of the year.e. 2. Months.e. If the subject is unable to learn the phrase after three attempts. For the name of the street (i.” If the subject cannot recall the last month of the year. The trial phrase should be re-administered until the subject is able to repeat the entire phrase without assistance or until a maximum of three attempts.wustl. now remember that name and address for a few minutes.

van Belle G. such as Alzheimer’s disease. quite sensitive to early cognitive changes associated with Alzheimer’s disease. Neurology. The Consortium to Establish a Registry for Alzheimer's Disease (CERAD). Clark C. Heyman A.5) Weighting Factor X4 X3 X3 X2 X2 X2 Final Item Score Sum Total = (Range 0 – 28) _________ Interpretation A screening test in itself is insufficient to diagnose a dementing disorder.. Scores of 7 or higher would indicate a need for further evaluation to rule out a dementing disorder. (1989). 3 . but a very early disease process cannot be ruled out. The SBT is. 90% of normal scores 6 points or less. Mohs RC. More advanced assessment may be warranted in cases where other objective evidence of impairment exists. 1983). Mellits ED. In the original validation sample for the SBT (Katzman et al. Based on clinical research findings from the Memory and Aging Project3. 39(9):1159-65. Part I. Clinical and neuropsychological assessment of Alzheimer's disease. however. Hughes JP. Fillenbaum G. Scores in the impaired range (see below) indicate a need for further assessment. Scores in the “normal” range suggest that a dementing disorder is unlikely.Final SBT Score & Interpretation Item # 1 2 3 4 5 6 Errors (0 . the following cut points may also be considered: o 0–4 o 5–9 o 10 or more Normal Cognition Questionable Impairment (evaluate for early dementing disorder) Impairment Consistent with Dementia (evaluate for dementing disorder) Morris JC.

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0 correct: 0 pt LANGUAGE Repeat : I only know that John is the one to help today. No points if ≥ 2 errors Serial 7 subtraction starting at 100 [ ] 93 [ ] F BAC M N A A J K L BA FA K D E A A A JA M O FA A B [ ] 86 [ ] 79 [ ] 72 [ ] 65 4 or 5 correct subtractions: 3 pts. Read list of digits (1 digit/ sec. [ ] The cat always hid under the couch when dogs were in the room. subject must repeat them.ruler CHURCH FACE [ ] VELVET [ ] [ ] DAISY [ ] RED [ ] ORIENTATION [ ] Date [ ] Month [ ] Year [ ] Day [ ] Place TOTAL [ ] City __/6 __/30 © Z. Do 2 trials.mocatest. The subject must tap with his hand at each letter A.orange = fruit Has to recall words WITH NO CUE Category cue Multiple choice cue [ ] train – bicycle [ ] watch .0 www.org Normal ≥ 26 / 30 Administered by: ___________________________________________________ Add 1 point if ≤ 12 yr edu . 2 or 3 correct: 2 pts. [ ] Fluency / Name maximum number of words in one minute that begin with the letter F [ ] _____ (N ≥ 11 words) Points for UNCUED recall only __/1 __/2 __/5 ABSTRACTION DELAYED RECALL Optional Similarity between e.Nasreddine MD Version 7.g.).MONTREAL COGNITIVE ASSESSMENT (MOCA) VISUOSPATIAL / EXECUTIVE NAME : Education : Sex : Copy cube ( 3 points ) Date of birth : DATE : POINTS Draw CLOCK (Ten past eleven) 5 End E A B 4 [ D Begin 1 2 3 ] [ ] Contour C NAMING [ ] Numbers [ ] Hands [ ] __/5 [ ] MEMORY Read list of words. 1 correct: 1 pt. Do a recall after 5 minutes. [ ] FACE VELVET CHURCH DAISY [ ] __/3 RED 1st trial 2nd trial Subject has to repeat them in the forward order Subject has to repeat them in the backward order No points ATTENTION [ ] 2 1 8 5 4 [ ] 7 4 2 __/2 __/1 __/3 __/2 Read list of letters. banana .

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For example. What day of the week is it? 1 2. 2 What was the female’s name? 2 What work did she do? 2 When did she go back to work? 2 What state did she live in? TOTAL SCORE __/8 SCORING HIGH SCHOOL EDUCATION 27-30 21-26 1-20 * Mild Neurocognitive Disorder SH Tariq. The Saint Louis University Mental Status (SLUMS) Examination for Detecting Mild Cognitive Impairment and Dementia is more sensitive than the Mini-Mental Status Examination (MMSE) . I am going to tell you a story. They lived in Chicago. She then met Jack. you would say 24. N Tumosa.SLUMS Examination Questions about this assessment tool? E-mail aging@slu. Apple Pen Tie House Car 5. VAMC Name Is patient alert? __/1 __/1 __/1 Age Level of education __/3 __/3 __/5 __/2 __/4 __/2 1 1. I will ask you what they are later. She married him and had three children. I’m going to ask you some questions about it. Jill was a very successful stockbroker. J am Geriatri Psych (in press). Please listen carefully because afterwards. Please place an X in the triangle. 8. You have $100 and you go to the store and buy a dozen apples for $3 and a tricycle for $20.A pilot study. What were the five objects I asked you to remember? 1 point for each one correct. she went back to work. 2 Hour markers okay 2 Time correct 1 10. She made a lot of money on the stock market. She then stopped work and stayed at home to bring up her children. What state are we in? 4. I am going to give you a series of numbers and I would like you to give them to me backwards. How much did you spend? 1 2 How much do you have left? 6. Please name as many animals as you can in one minute. 1 Which of the above figures is largest? 11. Please put in the hour markers and the time at ten minutes to eleven o’clock. When they were teenagers. and JE Morley.edu. She and Jack lived happily ever after. a devastatingly handsome man. 0 87 1 649 1 8537 9. if I say 42. HM Perry III. JT Chibnall. Please remember these five objects. This is a clock face. Normal MNCD* Dementia LESS THAN HIGH SCHOOL EDUCATION 25-30 20-24 1-19 . 0 0-4 animals 1 5-9 animals 2 10-14 animals 3 15+ animals 7. What is the year? 1 3.

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Appendix C Nutritional Assessment Tool .

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M366-M372. O. Z. L.. digestive problems. B. J.. Screening for undernutrition in geriatric practice: Developing the shortform Mini-Nutritional Assessment (MNA-SF). Salvà. Y. continue assessment Rubenstein.2 and 6. 56A. Harker. Guigoz. & Vellas. ..6 lbs) 1 = does not know 1 = weight loss between 1 and 3kg (2. chewing or swallowing difficulties? 0 = severe loss of appetite 1 = moderate loss of appetite 2 = no loss of appetite Weight loss during last three months 0 = weight loss greater than 3kg (6.6 lbs) 3 = no weight loss Mobility 0 = bed or chair bound 1 = able to get out of bed/chair but does not go out 2 = goes out Has suffered psychological stress or acute disease in the past three months 0 = yes 2 = no Neuropsycholocial problems 0 = severe dementia or depression 1 = mild dementia 2 = no psychological problems Body Mass Index (BMI) (weight in kg)/(height in m)2 0 = BMI less than 19 1 = BMI 19 to less than 21 2 = BMI 21 to less than 23 3 = BMI 23 or greater TOTAL (0-14) 12 points or greater: Normal. A. no need for further assessment 11 points or below: Possible malnutrition. (2001). Journal of Gerontology.Mini Nutrition Assessment Score Has food intake declined over the past three months due to loss of appetite..

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Appendix D Behavioral Symptoms Assessment Tool .

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stanford. from http://stressandhealth. 2008. If so. how much has this bothered or upset you when it happened? Use the following scale for your reaction (RC3). things Difficulty concentrating on a task Destroying property Doing things that embarrass you Waking you or other family members up at night Talking loudly and rapidly Appears anxious or worried Engaging in behavior that is potentially dangerous to self or others Threats to hurt oneself Threats to hurt others Aggressive to others verbally Appears sad or depressed Expressing feelings of hopelessness or sadness about the future Crying and tearfulness Commenting about death of self or others Talking about feeling lonely Comments about feeling worthless or being a burden to others Comments about feeling like a failure. 0-4)) The following is a list of problems patients sometimes have. or about not having any worthwhile accomplishments in life Arguing.html] .e. Please indicate if any of these problems have occurred during the past week. and/or complaining [Teri et al. irritability. but not finishing. (1992). items in newspaper or TV) Trouble remembering significant past events Losing or misplacing things Forgetting what day it is Starting. retrieved April 15. Behavior Asking the same question over and over Trouble remembering recent events (i.edu/ measures/RMBPC.Behavioral Symptoms Checklist Reaction Ratings: 0 = not at all 1 = a little 2 = moderately 3 = very much 4 = extremely Has it occured in the past week? (circle one) yes yes yes yes yes yes yes yes yes yes yes yes yes yes yes yes yes yes yes yes yes yes yes yes no no no no no no no no no no no no no no no no no no no no no no no no Reaction (how much it bothered you.

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Appendix E Depression Assessment Tool .

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unable to sustain activities (score only if change occurred acutely. Mood congruent delusions: delusions of poverty. i. Multiple physical complaints (score 0 if GI symptoms only) 8.e. Mood-Related Signs 1.. Cyclic Functions 12. Weight loss (score 2 if greater than 5 lb. A.e.Cornell Scale for Depression in Dementia Name________________________________ Inpatient Age ______ Sex ______ Date _____________ Outpatient Nursing Home Resident Scoring System A = unable to evaluate 0 = absent 1 = mild or intermittent 2 = severe Ratings should be based on symptoms and signs occurring during the week prior to interview. Early morning awakening: earlier than usual for this individual E. Poor self esteem: self-blame. Behavioral Disturbance 5. or loss a a a a a a a a 0 0 0 0 0 0 0 0 1 1 1 1 1 1 1 1 2 2 2 2 2 2 2 2 a a a 0 0 0 1 1 1 2 2 2 a a a a a a a a 0 0 0 0 0 0 0 0 1 1 1 1 1 1 1 1 2 2 2 2 2 2 2 2 . Agitation: restlessness. Lack of energy: fatigues easily. Appetite loss: eating less than usual 10. handwringing. slow reactions 7. in 1 month) 11. short-tempered B. Ideational Disturbance 16. Physical Signs 9. or makes suicide attempt 17. self-depreciation. Pessimism: anticipation of the worst 19. Anxiety: anxious expression. tearfulness 3. No score should be given in symptoms result from physical disability or illness. in less than 1 month) C. i. slow speech. illness. Loss of interest: less involved in usual activities (score only if change occurred acutely. Difficulty falling asleep: later than usual for this individual 14. Suicide: feels life is not worth living. Retardation: slow movement. feelings of failure 18. in less than 1 month) D. sad voice. has suicidal wishes. ruminations. Lack of reactivity to pleasant events 4. worrying 2. Diurnal variation of mood: symptoms worse in the morning 13. Irritability: easily annoyed. hairpulling 6. Multiple awakenings during sleep 15. Sadness: sad expression.

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Appendix F Safety Assessment Tools .

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breaks and other damage. A safe environment can help prevent injuries. • Consider turning off the gas and electricity in certain areas. • Lock cabinets and work rooms that contain toxic chemicals. • Consider precautions such as locking up knives.org © 2007 Alzheimer’s Association. stoves. The person may not be able to tell when food is too hot to eat. a person may try to open a can by jabbing it with a screwdriver.alz. • Be prepared to balance safety with needs for privacy and independence. Simplify routines and provide step-by-step guidance. • Know that even apparently safe devices can be hazards. appliances and electric tools • Be aware that the person may not remember how to use appliances and tools. • Test the temperature of food before it’s served. and it can help the person with dementia feel relaxed and less overwhelmed. • Hide potentially dangerous toiletry items such as razor blades. lawn mowers and barbecue grills. This is an official publication of the Alzheimer’s Association but may be distributed by unaffiliated organizations and individuals.800. • Don’t let electrical cords dangle. Be patient and slow down. Keep track of how many pills are being taken. • Remove toxic plants such as poinsettias or mistletoe. Guard against choking and poisoning • Due to changes in the brain. Eliminate potential hazards. assess the environment for hazards. • Be realistic. • Be prepared for the unusual. such as coffeemakers. • Discourage the person from entering the kitchen without you. especially during complex personal care activities such as bathing. 1. For example. Such distribution does not constitute an endorsement of these parties or their activities by the Alzheimer’s Association. power tools. Accidents can happen when a person is rushed. Try to see the world through the eyes of a person who has Alzheimer’s and adapt the environment to his or her needs. when not in use. All rights reserved. • Place at eye level appliances that the person can safely use. Potential hazards include toaster ovens.Safety Providing for safety is an important job for caregivers. Be careful about knives. hiding appliances and removing knobs from the stove when not in use. • Lock up all medications. You can’t anticipate every risk or prevent every problem. 1 . Some people may eat items such as gravel and dirt. • Unplug all heat-producing appliances. • Don’t let food spoil in the refrigerator or pantry.3900 | www.272. • Regularly check electrical cords for frays. Focus • • • • on prevention Don’t expect the person to do things safely. coffee makers. To enhance safety. the person may not understand swallowing foreign substances could cause choking or poisoning. • Put safety covers on electrical outlets. toileting and dressing.

extension cords and other obstacles. Keep them well-lit. Install anti-scald devices on faucets. and electric blankets and heating pads. don’t let pets sleep in traffic areas. • Provide sturdy items to lean against along frequently traveled paths. check them monthly. o Use place mats instead of tablecloths.3900 | www. microwaveprepared food. and consider using a contrasting color along the edge of steps. Set your hot water heater to 110 degrees F. Help the person test water temperatures and mix cold water with hot.org © 2007 Alzheimer’s Association. • Avoid accidents associated with cooking and eating: o Turn pan handles toward the middle of the stovetop. • Cover all light bulbs with shades or globes. • Make sure lighting is evenly distributed to avoid “hot spots” and shadows. All rights reserved. • Hide matches and cigarette lighters. • Keep the person from smoking. o Pour hot liquids away from the person’s body. • Listen for sizzling and crackling sounds that indicate something is heating up. provide handrails on both sides. • Install night lights on the path to the bathroom. bath seats and commode chairs. • Make stairways safe. Such distribution does not constitute an endorsement of these parties or their activities by the Alzheimer’s Association. • Install ground-fault outlets near all water sources. • Remove electrical appliances to reduce the chance of electrocution or shock. o Test the temperature of microwave-prepared foods. curling irons. o Do not place containers of hot liquid near the edges of tables and countertops. Ensure safety in bathrooms • Install devices such as grab bars. • Put non-slip mats or appliqués in tubs and showers. • Install child-proof gates at both the head and foot of stairs. if possible. 1.272. make sure steps are even and uniformly deep. • Remove throw rugs. o Do not let the person wear loose clothes while cooking. This is an official publication of the Alzheimer’s Association but may be distributed by unaffiliated organizations and individuals.800. • Install fire extinguishers and smoke alarms.alz. • Reduce clutter. • Take precaution against scalding hot water. space heaters. cold and fire • Keep in mind that a person with Alzheimer’s may lose sensitivity to temperature extremes and may forget about their dangers. • Make sure carpets are properly tacked down on all sides. • Be cautious about items such as stoves. keep the pot as far away as possible. • Avoid rearranging furniture. • Wipe up spills immediately. Prevent slips and falls • Make sure the person wears non-skid shoes. Or supervise an individual with dementia while he or she smokes.Be careful about heat. 2 .

• Get an intercom system (such as those used in infants’ rooms) or install Dutch doors. such as the police and fire departments. so you can stay aware of the person’s activities while in another room. To learn more or to enroll. like the one available through MedicAlert® + Alzheimer’s Association’s Safe Return®.alz.alz. • Put locks at the top or bottom of doors.org © 2007 Alzheimer’s Association. • Install electronic alert alarms.572.888.272. The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care. • Develop escape plans in case of fire. • Camouflage the outside door or place a dark rug in front of it to discourage the person from approaching.3900 | www.org.8566 or register online at www.800. Resources MedicAlert + Safe Return is a 24-hour nationwide emergency response service for individuals with Alzheimer’s or related dementia that wander or who have a medical emergency. • Hang chimes on doors. hospitals and poison control centers. out of the person’s line of sight. contact your local Alzheimer’s Association. • Never let a person with Alzheimer’s handle a gun. • Make sure the person wears an identification bracelet. lock guns away in a cabinet or drawer. Get rid of guns • Remove guns from the house. support and research. call 1. store ammunition in a separate place. Create emergency plans • Prepare a list of emergency phone numbers. 3 . • Don’t keep guns loaded.Prevent wandering • Consider installing safety doorknobs. This is an official publication of the Alzheimer’s Association but may be distributed by unaffiliated organizations and individuals. All rights reserved. Such distribution does not constitute an endorsement of these parties or their activities by the Alzheimer’s Association. • Recruit someone who lives nearby to help in case of emergency. At minimum. Updated November 2007 1.

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Appendix G California Forms .

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5” x 14.5” x 11” for demonstration ” purposes only. Please download the correct form from http://www.Note: This form is 8. and has been altered to fit 8.dmv.ca. sa m p le .gov.

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Appendix H Caregiver Assessment Tool .

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.... Felt completely overwhelmed ..... elt that I couldn’t leave my F relative alone .. During the past week or so.” please rate your current level of stress. Yes .... n a scale of 1 to 10.... Yes 14.... elt a loss of privacy and/or F personal time ...... Yes 9.” please rate your current health compared to what it was this time last year.. elt ill (headaches. Yes ... 1.... ad trouble keeping my mind H on what I was doing ... een upset that my relative B has changed so much from his/her former self .... 10... _______ 18................. Felt useful and needed ..Caregiver self-assessment questionnaire How are YOU? Caregivers are often so concerned with caring for their relative’s needs that they lose sight of their own well-being.......... Had back pain ... Yes ..... Once you have answered the questions. 15.. I have .. with 1 being “very O healthy” to 10 being “very ill......... 7.... Yes 3....... Felt lonely ..................... Been edgy or irritable ...................... Yes ... Yes .... 13... 6.... No __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ ..... Yes No No No No No No No No No 17............................. Yes 5........... Yes 8..... with 1 being “not O stressful” to 10 being “extremely stressful. Yes 4. n a scale of 1 to 10.... Yes ...... Yes 2. elt strained between work F and family responsibilities ... Yes No ....... ad difficulty making H decisions .. een satisfied with the support B my family has given me ......... Had a crying spell(s) ...........) No No 12....... _______ No No No Comments: (Please feel free to comment or provide feedback..... stomach F problems or common cold) ...... turn the page to do a self-evaluation. 16......................... Please take just a moment to answer the following questions.. Yes 11......... ad sleep disturbed because H of caring for my relative .................. ound my relative’s living F situation to be inconvenient or a barrier to care .

org Medicare Hotline (800) 633-4227 www.nichcy.nfcacares. or • If your score on question 17 is 6 or higher.) • Consider joining a support group Valuable resources for caregivers Eldercare Locator (a national directory of community services) (800) 677-1116 www.org National Information Center for Children and Youth with Disabilities (800) 695-0285 www.eldercare.caregiver. Total the number of “yes” responses.gov National Alliance for Caregiving (301) 718-8444 www. To interpret the score Chances are that you are experiencing a high degree of distress: • f you answered “Yes” to either or both I questions 4 and 11.caregiving. or • If your total “Yes” score = 10 or more. a “No” response should be counted as “Yes” and a “Yes” response should be counted as “No.”) Local resources and contacts: _________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ SIA:08-0011:PDF:1-08 2.gov Family Caregiver Alliance (415) 434-3388 www. or • If your score on question 18 is 6 or higher Next steps • onsider seeing a doctor for a check-up C for yourself • onsider having some relief from caregiving C (Discuss with the doctor or a social worker the resources available in your community.medicare. everse score questions 5 and 15. R (For example.org .org National Family Caregivers Association (800) 896-3650 www.Self-evaluation To determine the score: 1.

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