Jeanine Penzo, MSW, LICSW VA Boston Healthcare System PVA Summit August 27, 2013

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 noncaregiving 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 endof-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% 10% 9% 0% Little or No Burden Mild to Moderate Moderate to Severe Severe Burden 0%

Reported Health Impact Nearly Always 0% N=57 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?