Jeanine Penzo, MSW, LICSW

VA Boston Healthcare System

PVA Summit

August 27, 2013

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.

Objectives

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 )

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)

Home Alone: Family Caregivers Providing Complex Chronic Care

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: 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

Ambiguous Loss

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.

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

VA BHS FY12

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?

Zarit Burden Interview (SF)

Responses:

Never (0)

Rarely (1)

Sometimes (2),

Quite Frequently (3)

Nearly Always (4)

Interview Responses

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

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.

Results

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

FY 13 Caregiver Assessments

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

Caregiver Resources

Reported Caregiver Burden

46% 45%

9%

0% 0%

10%

20%

30%

40%

50%

Little or No Burden Mild to Moderate Moderate to Severe Severe Burden

N=69

Reported Health Impact

37%

35%

25%

3%

0%

0% 10% 20% 30% 40%

Never

Rarely

Sometimes

Quite Frequently

Nearly Always N=57

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

Looking Forward

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.

References

Thank You Questions? Comments?