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The Alzheimers Disease Journey:

Resources to Meet Changing Needs

Susan Peterson-Hazan, MSW, LCSW
Emory Alzheimers Disease Research Center
What do Families Want to Know?

What is the name of the disease?

Where are we in this journey?
What is available to help us?
How will we pay for the help we need?
Definition of Dementia:
A syndrome of progressive decline
Gradually erodes intellectual abilities
Results in cognitive & functional deterioration
Leads to impairment of social and occupational
It does not tell you what is CAUSING the dementia
Is an general term
It is not a diagnosis
Therefore you do not know how to treat the dementia
Early Symptoms Provide Clues

Gradual onset
& Progressive
Memory loss
Causes of Dementia that MAY be reversible
Delirium Sudden Onset
Hospitalization and/or surgery
Medication reaction
B12 Deficiency
Thyroid Disease
What is the Diagnosis

Dementia with
Lewy Bodies Disease
Stages of Memory Loss

Normal Age Related Memory Loss

Mild Cognitive Impairment
Early AD
Middle Stage AD
Late Stage AD
Terminal AD
Alzheimers Disease Stages
Families frequently ask where their loved one is in their journey with Alzheimers or other dementia. Various staging systems have been
proposed, however we find that thinking about early, middle and late disease stages provides a structure for the journey each individual
with AD and their family are facing. AD effects an individuals cognitive and thinking skills, their functional abilities and their
behavior. As changes occur in a loved one, families will seek additional resources.

MCI Early AD (Mild) Middle AD (Moderate) Late AD (Severe)

Common Symptoms Common Symptoms Common Symptoms

Short term (recent) memory is failing Short Term (recent) Memory is Long term memory is now
Forgets recent events and conversations significantly impaired, very repetitive significantly impaired
Mild Cognitive Impairment

Difficulty balancing checkbook Long term memory declines Frequently do not recognize their
Difficulty paying bills appropriately Medication must be managed for them spouse

Profound & Terminal

Needs medication reminders Financial management must be handled Often do not recognize themselves
Must use calendar to remember by others when looking in a mirror
appointments Can no longer prepare simple meals Must be totally assisted with bathing,
May have difficulty finding the right Can no longer drive safely dressing and grooming
word Needs structure to choose appropriate Incontinent most of the time
May leave stove on when cooking clothes Unable to recognize familiar places,
Driving skills are declining Bathing must be supervised or assisted including their home
May get lost driving in familiar places Often resist bathing Frequently want to go home, even
May have difficulty remembering names Personality changes may appear when in their own home
of acquaintances Late Middle Stage Believe their mother or father is alive
May be less comfortable in large group May not recognize their children May talk to imaginary people
situations such as church May pace or do repetitive activities Unable to understand or use words
May have increasing apathy or agitation May need to be fed
May get lost in familiar places
Mild Cognitive Impairment
Characterized by mild short term memory problems
Independent in all functional areas
All other cognitive domains are normal

May be related to stress or depression

May be a transitional state between normal aging
and dementia
Early Alzheimers
Memory loss is gradually increasing
Difficulty learning new information
Tasks take longer to accomplish
Increased hesitancy and uncertainty
Routine tasks and functions are well preserved
Problems with organization, reasoning and judgement
Early AD Functional Changes
Difficulty managing finances & paying bills
Decreased ability to initiate activities
Trouble with making decisions
Less Confident driving to new locations
May get lost driving
Increased difficulty planning, purchasing and
cooking meals
Needs structure to take medications
MCI & Early AD Relationship Dynamics
are Changing
Care Partners experience People with Early AD
loses experience losses some
cause anger
Subtle changes in Money management
relationship Medication Management
Gradual transfer of Driving
responsibilities Cooking
Learning new Skills:

Who said men couldnt decorate or

cook or schedule a social event?

Who said women couldnt pay the bills

or manage investments or hire a
Legal & Financial Planning
MCI & Early AD

Georgia Advance Directive for Healthcare

Financial Power of Attorney
Executing legal documents requires decision-making
Encourage a plan for financial oversight &
Early Stage Resources: MCI & Early AD
Consult an Elder Lawyer National Academy of Elder Law
Driving & Alzheimer's
Preparing to be a non-driver
Join an Early Alzheimers
Education/Support Program
You are not alone! Alzheimers Association
Care Partners Need to Expand their Support

Daycare Programs
In home Respite
Asking for help from family & friends
Contact the Alzheimers Association
1 800-272-3900
Middle Stage AD Cognitive Changes
Short term memory is significantly impaired
Long term memory also impaired
Visual Spatial challenges increase
Executive Function has declined no longer able to make
Orientation - Unable to keep track of time, day, date or year
Middle Stage AD Functional Activities
Develop routine & structure to the day
Prompting and/or assistance as needed for bathing, dressing
& personal hygiene
Medication must be managed & dispensed
Meals must be provided
Provide activities
Middle Stage AD Behavioral Changes
Behavioral Challenges may appear
Agitation and/or irritability

Suspiciousness, delusions & hallucinations


Pacing and/or wandering



Sleep Challenges
Middle AD
Caregivers are learning how to manage difficult behavior
Repeating the same story over and over
Refusing to bathe
Wearing the same clothes day after day
Accusing the caregiver of stealing
Refusing to take medication
Plan for Middle Stage AD
Find & utilize respite services
Daycare programs
Hire caregivers in the home
Utilize assisted living
Learn about SOURCE and Community Care Services Program (CCSP)
Its never to early to be on waiting lists for these programs
Plan for Middle Stage AD
Take a class that teaches strategies for caregivers:
Savvy Caregiver Class
Emory Integrated Memory Care Clinic
TeleSavvy - Emory School of Nursing Research Project
Powerful Tools for Caregivers
Agewise Connection
Now in its 6th Edition
The Classic Family Guide to
Caring for People with
Alzheimers & other Dementias
By Nancy Mace, MA &
Peter Rabins, MD, PhD
Challenge for Caregivers
Accept that the person with AD can not change their behavior

The caregiver will need to change their approach to problem

Caregivers have the ability to change their behavior
Caregiver Tools
Live their truth - Live in their reality
You will never win an argument with someone with Alzheimers disease
Logical explanations often make people with AD mad
Do not correct - Does anyone like to be corrected?
They are right - You are wrong
Keep your sense of humor
Mirroring Behavior
Avoid Confrontation
Acknowledge feelings
Use behavioral interventions first

Talk with your physician about medication

Usually best to start at a low dose
Gradually increase as recommended by physician
Be alert for side effects of the new medication
But, My Wife is not that Impaired!
Late Stage AD
Requires help with all daily functioning
May begin to have problems with
Incontinent of bladder and bowel
Falls often become a problem
Increased risk of infections
No longer consistently recognizes spouse
Late Stage AD Educational Needs
Clarify aggressiveness of care
Artificial feeding/hydration tubes
Learn about hospice
Assistance with preparing for death
Clarify if the family wants an autopsy
Confirmation of diagnosis is important
Late Stage AD Educational Needs
Make funeral preparations
Care for the caregiver
Common feelings
I could have done more
I didnt make the right decisions
guilt - that I felt so relieved when he died
I didnt take care of my own medical needs
I had to recreate a life for myself
Late Stage AD Educational Needs
Care for the Caregiver
Encouragement to take care of their own health
Encouragement to continue with some of their own activities
Opportunity to grieve
Encouragement to find support
Plan for Late Stage AD
Hospice Services
Home Hospice Care
Inpatient Hospice Care
In Home Caregivers
Nursing Homes

End of Life: Helping with Comfort and Care
Aging Resources
Area Agency on Aging Metro Atlanta
Resource Directory is currently unavailable but there is general info on the
404-463-3333 or 1-866-552-4464
A resource specialist can provide you with a list of resources near
your home: daycare, assisted living, personal care homes, nursing
homes, etc.
SOURCE is a Medicaid Waiver Program offering an array of services to
help persons stay in the community that serves individuals who have
SSI or Public Law Medicaid. It is a very cost effective program in
comparison to nursing home care.
The Community Care Services Program (CCSP) helps Medicaid-eligible
people who are elderly and/or functionally impaired to continue
living in their homes and communities. CCSP offers community-based
care as an alternative to nursing home placement. Individuals who
would be eligible for Medicaid in a nursing home & physician approval
for plan of care.
Services Covered by CCSP & SOURCE

Adult Daycare
Emergency Response Systems
Personal Support Service, which includes assistance with bathing,
light housekeeping, laundry, shopping, meal preparation and respite
Home Delivered Meals
Skilled Nursing Service
Out of Home Respite Care
Alternative Living Services, which provides meals, personal care and
supervision in an approved personal care home.
How Do We Pay for Services?
Medicare is Health Insurance -
Covers Hospital care
Home Health Care
after a 3 day hospital stay may cover up to 21 days in a Skilled Nursing Home
for Rehab services or partial payment for 100 days there are restrictions
Medicaid For Low Income people financial eligibility criteria
CCSP & Source
Nursing Home Care
Hospice Care
How Do We Pay for Services?

Home Care, Day Care, Assisted Living & Person Care Homes
Private Pay
Long Term Care Insurance
CCSP & Source
Throughout the Disease Course

Prepare for the future

Do your homework before a crisis
Laugh at what is absurd - laugher is healing
Cry as often as needed
Seek help before they feel hopeless
Alzheimers Association
Some of their services are:
Early Stage Memory Loss Groups
A Time To Talk
Forget-Me-Nots/Carpe Diem
Caregiver Support Groups
Care Counseling
24 hour helpline
Emory Alzheimers Disease Center Research

Prevention Trials 4 currently recruiting

Mild Cognitive Impairment Clinical Trials - 7 currently recruiting
Alzheimers Disease Clinical Trials 4 currently recruiting
Caregiver Research 1 currently recruiting
Telesavvy Clinical Trial 404-712-9578
Emory Healthy Aging Study
18 or over
Participation means signing up online, indicating that you understand
the terms of involvement, and completing a brief health history
You will be asked to share other sources of information with us such
as data from a fitness tracker, and any medical records that Emory
may have on you
Periodically we will invite you to complete surveys or assessment or
invite you to participate in other voluntary research opportunities.
Emory Healthy Brain Study
This study is a part of the Emory Healthy Aging Study.
This research aims to change our understanding of aging and age-
related diseases for generation to come.
Participants must complete the Emory Health Aging study health
history questionnaire.
By reviewing this questionnaire we can identify appropriate
participants for more involved, long term studies in our fight against
Alzheimer's disease.
Additional study may involve questionnaires, assessments, scans, and
specimen collection.
Thanks to all of the individuals with AD and
their families who have allowed me to be on
the Alzheimers Journey with them.
They are my heroes.