Jeanine Penzo, MSW, LICSW

VA Boston Healthcare System

PVA Summit
August 27, 2013
 Objectives

1.To discuss the benefits of recognizing and assessing levels of
caregiver stress/burden. This will include discussion of valid and
reliable assessment tools.

2.To present current data concerning the levels of caregiver

stress /burden in primary caregivers of individuals with SCI and
its potential impact on the health of patients.

3.To provide data from FY 12 and FY 13 regarding the

interventions offered to caregivers and their roles in decreasing
caregiver burden, allowing for better care of veterans/individuals
with SCI.
 National Alliance for
Caregiving/ AARP

 More than 65 million people, 29% of the U.S. population,
provide care for a chronically ill, disabled or aged family
member or friend during any given year and spend an
average of 20 hours per week providing care for their
loved one.
(National Alliance for Caregiving in collaboration with
AARP; November 2009 )
 Home Alone: Family Caregivers
Providing Complex Chronic Care

 46 % of family caregivers in the U.S. perform medical
and nursing tasks.
 Three out of four provide medication management –
including administering IVs and injections – for a family
member with multiple chronic physical and cognitive
conditions.
 More than a third of these caregivers providing medical
and nursing tasks reported doing wound care.
 Other tasks include operating specialized medical
equipment and monitors. (United Hospital Fund and the
AARP Public Policy Institute-Sept. 2012)
 Value Of Family Caregiving

 The value of the services family caregivers provide for
"free," when caring for older adults, is estimated to be
$375 billion a year. That is almost twice as much as is
actually spent on homecare and nursing home services
combined ($158 billion).

(National Alliance for Caregiving and Evercare; March

2009)
 Caregiver/Patient Relationship

 “Identifying caregivers’ concerns and needs can lead to
more effective strategies for optimal functioning of
patients.” (Zarit, 2007)

 “It makes sense clinically to assess caregivers… This

leads to best clinical decisions for patients.” (Zarit, 2007)
 Health Effects of Caregiving


 2012 –Harvard School of Public Health
 8 year study looking at association between spousal
caregivers (age 50+) and the incidence of Cardiovascular
Disease (CVD)
 Long term caregivers risk for CVD doubled over their non-
caregiving peers.
 2012 - Instituto Andaluz de Neurociencia y Conducta,
Málaga, Spain
 Study focused on coping strategies and psychological
distress in caregivers of Alzheimer's patients.
 Increase in depression and anxiety
 Signs of Stress/Burden

 Stressed caregiver presents with some of the following
feelings/emotions.
 Burdened caregiver presents with several of the
following feelings/emotions
 Anger, Anxiety
 Distress, Exhaustion
 Guilt, Helplessness
 Isolation, Vulnerability.
 Ambiguous Loss

 AMBIGUOUS LOSS: situation or problem with no
answer or resolution that can immobilize grief and
coping processes
 Stressful type of loss due to ambiguity
 Has the potential to disturb systemic processes
 Physical absence with psychological presence
 Missing persons, in kidnapping, war or terrorism
 Psychological absence with physical
 Dementia, depression & other chronic mental illness,
physical disability and chronic physical illness
 Types of Ambiguity

Family membership ambiguity
 Who is in the family now?
 Has it changed change?
Roles and rules ambiguity
 How have family rules changed as a result of
illness/injury?
 Adapting to caregiver role
Rituals ambiguity
 Impact of illness/injury on family celebrations, events and
rituals.
 Spousal/Partner Caregiving

Illness is one member of the couple
changes the caregiving relationship

Despite ‘caregiver burden’, caregivers

experience satisfaction, self worth & higher self
esteem

Caregivers may begin to grieve impending loss

 Impact Of Illness Onset

Has the onset of the illness been acute?
Traumatic Spinal Cord Injury

Is the illness chronic and/or relapsing

Non-Traumatic Spinal Cord Disease

Impacts Caregiving Relationship

 Work With Caregiver

Caregiver’s limitations and emotional
needs

Desire to protect care receiver from

burden of worry

Need for reciprocal systemic arrangement

for the couple
 Caregiver Assessment

 Identifying caregiver needs and concerns can result in
more effective strategies for optimal patient
functioning.
 Good assessment includes caregiving
demands and stressors, secondary stressors, personal
resources, social resources and risk factors.
 Should result in a care plan developed with the patient
and the caregiver (Zarit, 2007)
 Caregiver Assessment Tools

 Caregiver Strain Index

 Caregiver Burden Scale

 Caregiver Burden Interview

 Zarit Burden Interview

 Caregiver Strain Index

 Measures caregiver strain using yes/no response scales.

 12 items (2-point scale)

 Robinson, B. C. (1983). Validation of a caregiver strain

index. Journal of Gerontology, 38, 344-348.
 Caregiver Burden Scale

 Measures caregiver burden at the end of life.
 18 items (4-point scale)
 Dumont, S., Fillion, L., Gagnon, P., & Bernier, N. (2008).
A new tool to assess family caregiver burden during end-
of-life care. Journal of Palliative Care, 24(3), 151-161
 Caregiver Burden Interview

 To measure caregiver burden as it relates to time,
developmental comparison with peers, physical health,
social relationships, and emotional health.
 5 items for each: a) time-dependence burden; b)
developmental burden; c) physical burden; d) social
burden (5-point scale)
 4 items for emotional burden (5-point scale)
 Novak, M., & Guest, C. (1989). Application of a
multidimensional Caregiver Burden Inventory. The
Gerontologist, 29, 798-803.
 Zarit Burden Interview

 Measures caregiver appraisal of the impact of
caregiving.
 22 items (5-point scale) –Long form
 4 items – Short form
 Zarit, S. H., Reever, K.E., & Bach-Peterson, J. (1980).
Relatives of the impaired elderly: Correlates of feelings
of burden. The Gerontologist, 20, 649-655.
 VA BHS FY12

 Caregivers accompanying veterans with SCI/D to
comprehensive annual exam competed Zarit
Burden Interview (SF)
 Those with scores of 8+ on scale of 0-16 were asked
to Complete Zarit Burden Interview (LF)
 Caregivers seen on SCI Homecare visits were
given the same assessments
 Zarit Burden Interview (SF)

 Do you feel your relative asks for more help than
he/she needs?
 Do you feel that because of the time you spend
with your relative, you don’t have enough time for
yourself?
 Do you feel stressed between caring for you
relative and trying to meet other responsibilities to
your family or work?
 Do you feel angry when you are around your
relative?
 Interview Responses

 Responses:
 Never (0)
 Rarely (1)
 Sometimes (2),
 Quite Frequently (3)
 Nearly Always (4)
 Scoring the Zarit (SF)

 0 – 5: Little or No Burden

 6-10: Mild to Moderate Burden

 11-15: Moderate to Severe Burden

 16-20: Severe burden

 Scoring the Zarit (LF)

 0 – 21: Little or No Burden

 21-40: Mild to Moderate Burden

 41-60: Moderate to Severe Burden

 61-88: Severe burden

 Results

 At VA BHS, several caregivers during clinic
appointments or home visits spoke of stresses
involved in caring for their loved ones with SCI
 FY 12 at VABHS assessments showed
 31% of at home caregivers in SCI/D surveyed VABHS
reported high moderate to severe burden.
 75% of at home caregivers in SCI/D reported that their
own health had suffered while caring for the veteran.
 FY 13 Caregiver Assessments

 Question added to Zarit SF
 Do you feel your health has suffered because of your
involvement with your relative?
 Expanded assessment to 4 VISN 1 Medical Center
SCI Primary Care Clinics
 VA Connecticut HS –Jane Coffee, LICSW
 VA Maine HS -Mark Kmen, LICSW
 White River Junction VA MS - Michelle Turcotte-
Smail, LICSW
 Caregiver Resources

 List of Caregiver Resource for all 4 Medical Centers
Included names and contact information for each
resource at each site
 Resources include Inpatient Respite, In Home
Respite, 4 Telephone Caregiver Support Groups (1
dedicated to caregivers of Veterans with ALS, online
and local resources
 Caregiver Resources

 Resources discussed with individual caregivers as
needed
 Caregivers took home copy of resources list
 Discussions with caregivers as needed regarding
 Importance of Self Care
 Importance of Addressing Health Issues
 PCP appointment to address symptoms of anxiety
and depression
 Reported Caregiver Burden

50%

46% 45%
N=69
40%

30%

20%

9%
10%

0%
0%
Little or No Burden Mild to Moderate Moderate to Severe Severe Burden
 Reported Health Impact

N=57
Nearly Always 0%

Quite Frequently 3%

Sometimes 25%

Rarely 35%

Never 37%

0% 10% 20% 30% 40%

 Looking Forward

 Reach out to caregivers who do not accompany
veterans to Annual Evaluation
 Provide caregiver education using inter-facility
CVT and/or VANTS
 Provide caregivers with stress reduction protocol
 References

 Beach, Scott R.; et al. Negative and positive health effects of
caring for a disabled spouse: Longitudinal findings from the
Caregiver Health Effects Study. Psychology and Aging.
vol15(2), Jun 2000, 259-271.
 Boss, P. 1999. Ambiguous Loss: Learning to Live with
Unresolved Grief. Harvard University Press, Boston, MA.
 Capistrant, Benjamin D.; et al. 2012. Current and long-term
spousal caregiving and onset of cardio vascular disease.
International Psychogeriatrics . vol.24 (8) p.1325-1334.
 Caregiving in the United States; National Alliance for
Caregiving in collaboration with AARP; November 2009.
 References

 Garcia-Alberca; et al. Anxiety and depression are
associated with coping strategies in caregivers of
Alzheimer's disease patients. International
Psychogeriatrics Aug, 2012. Vol.24,Iss.8;p.1325-133
 Evercare Survey of the Economic Downturn and Its
Impact on Family Caregiving; National Alliance for
Caregiving and Evercare; March 2009.
 Home Alone: Family Caregivers Providing Complex
Chronic Care- United Hospital Fund and the AARP
Public Policy Institute; September 2012 .
 Greenberg, S., Penzo, J.A., & Stacy, M.A. 2001. Spousal
Caregiving: In Sickness and in Health” Journal of
Gerontological Social Work, 35 (4/4), 69-82.
 References

 Job, N., et al. 2004. Instruments for assessing the
burden of informal caregiving for stroke patients in
clinical practice: a comparison of CSI, CRA, SCQ and
self-rated burden. Clinical Rehabilitation. 18: 203.
 Samuelsson A.M., et al. 2001. Burden of responsibility
experiences by family caregivers of elderly dementia
sufferers: analyses of strain, feelings and coping
strategies. Scandinavian Journal of Caring Sciences . vol.
15 (1) 25-33.
 Zarit, S. H., et al. 2007 .The caregiver stress project and
health outcomes. Aging Health . vol. 19 (6) 871-887.
 Thank You
Questions? Comments?