The Experience of Caregiving Linda S. Noelker, Ph.D. Katz Policy Institute Benjamin Rose Institute on Aging Cleveland, Ohio Presented at the Caregiving Conference and Luncheon, December 6, 2013. PLEASE DO NOT CITE, QUOTE, DUPLICATE, OR DISTRIBUTE THIS DOCUMENT WITHOUT THE AUTHOR S PERMISSION 1 Presentation Objectives Understand the prevalence and experience of family caregivers who assist older relatives with chronic conditions Discuss the effects of caregiving for caregivers Explain interventions that lessen the negative effects of caregiving and strengthen its positive aspects Provide information on policy changes affecting caregivers 2 1
Prevalence and Economic Value of Caregiving In 2009, 42.1 million US caregivers assisted an adult with ADL limitations at any given time, and 61.6 million provided help at some time during that year (Feinberg et al., 2011) Economic value: $450 billion or $1,500 for everyone in US and approaching total Medicare expenditures of $509 billion (NCA, 2009) Economic value of caregivers assisting PswAD: $200+ billion (over 17 billion hours of unpaid care) 3 Prevalence in Ohio (2009) Total population: 11.5 million 2.4 million caregivers at any time during the year (20%) 1.6 billion hours of care Total value: $17.5 billion 4 2
Future Availability of Family Caregivers? Increasing number of older persons; greater rates of chronic conditions and disability in old age Rebalancing long term care away from nursing homes and to home- and community-based care Shrinking pool of family caregivers due to smaller families, high divorce rates, no children (10% of women in 1970s & 20% today) Geographically dispersed families Growing reliance on two-income households 5 Seeing Shift in Types of Assistance Given Supervision and cueing Help with Instrumental Activities of Daily Living Help with Personal Care Assistance Help with Medically complex care (Moorman & MacDonald, 2012) 6 3
Medically Complex Care Provided by 46% of family caregivers (Reinhard et al., 2012) Medication management (78%), wound care (35%), special diets, IV therapy, monitoring specialized medical equipment Only 31% reported home visits by a health care professional Most caregivers believe this care avoided institutionalization of the care receiver 7 Importance of Practitioners Assessment of Caregivers Consensus panel of 54 experts on family caregiving, health & LTC developed a resource inventory of assessment measures for practitioners (practical, reliable, valid, cited in the research literature) Purpose: systematically determine caregivers needs and strengths as the basis for care planning Measures cover 7 domains: care context, perceptions of care receiver s health and functioning, caregiver s values & preferences, caregiver s well-being, caregiving consequences, caregiver s skills, knowledge, and abilities, and potential resources www.caregiver.org/caregiver/jps/content/pdfs/selcgassmtmeas_resin v_final_12.10.12.pdf 8 4
Importance of Caregiver Assessment Initial assessment to establish baseline Reassess at point of care transitions for care receiver (e.g., hospitalization and discharge, move to AL or NH) Reassess at point of change in caregiver s status (e.g., health change, retirement) Reassess at specific intervals to examine change in selected outcomes of interest 9 Caregiving s Negative Financial Effects 27% reported moderate to high financial hardship (NCA & AARP, 2009) 24% cut back on care-related spending due to the recession 60% concerned about their personal savings 51% said the recession increased their carerelated stress 42% spend more than $5,000 yearly for carerelated expenses 10 5
Caregiving s Negative Effects on Employment and Income 69% make work accommodations (flex time, cut back hours, change shifts or jobs) Age 50+ leaving the workforce: projected loses are $115,900 in wages, $137,980 in SS benefits, and $50,000 in pension benefits 43% had work hours or pay cut since the recession US businesses: $33.6 billion per year in lost productivity from full-time caregiving employees 11 Caregiving s Negative Effects on Health 25% to 50% meet diagnostic criteria for major depression 17% to 35% report fair or poor health At higher risk for hypertension, heart disease, stroke, immune system dysfunction, slower wound healing, sleep problems, and psychotropic drug use (especially those caring for someone with AD) 12 6
Caregiving s Benefits Shift from conceptual models of caregiving as stress and burden to ones incorporating the Positive Aspects of Caregiving (Dooley et al., 2007) New construct: exemplary care (communicating that CR is loved, respected and worthy of special consideration) (Harris et al., 2011) Findings show caregivers of PswAD who saw themselves as giving more exemplary care reported better emotional outcomes (e.g., less depression) African-American caregivers had more positive perceptions of caregiving and less burden due in part to higher religiosity, lower anxiety, and less upset about problem behaviors 13 Resiliency Model of Family Adaptation for Caregiving Grandmothers Research on transitions in caregiving for 485 Ohio grandmothers over 2 years (Musil et al., 2010) Older grandmothers with increasing responsibilities raising grandchildren fared worse on most outcome measures While resiliency or learned resourcefulness was found to improve affect and cognition for elders with chronic illnesses, no significant differences in this measure were found among the caregiving groups (Zauszniewski et al., 2007) 14 7
Evidence-based Caregiver Interventions Cognitive, Behavioral, Psychosocial (www.rosalynncarter.org/caregiver_intervention_database) Anger, depression, and anxiety management Modeling caregiving behaviors Communication skills training Caring for a dying person Counseling and social support Family-based interventions Disease-specific: stroke, osteoarthritis, dementia, developmental disabilities, spinal cord, TBI 15 REACH: Resources for Enhancing Alzheimer s Caregiver Health Longitudinal, multi-site evaluation of the effectiveness of in-person and telephone social and behavioral interventions (Elliott et al., 2010) Multi-component intervention to alleviate caregiver stress Identifies risk levels (depression, burden, self-care, social support, problem behaviors) and related interventions (education, behavioral management skills, increase social support, cognitive reframing, increase healthy behaviors) Findings show improved self-reported health and decreased burden in white, black and Hispanic populations 16 8
Care Consultation Establishes ongoing, long-term relationship with clients using telephonic counseling and care coordination (http:///research/ebp_careconsultatio n.cfm ) Provides health- and care-related information; organizes family caregivers; increases awareness and use of community services; and provides coaching and emotional support Targets adults with chronic health conditions or disabilities and their caregivers 17 Dyadic Intervention: SHARE Supporting Health, Activities, Resources, and Education Targets those with early stage dementia and the primary caregiver (Whitlatch et al., 2006) 7 sessions: to increase knowledge of dementia, improve communication skills and support in the dyad, and increase understanding of care values & preferences Goal: to develop a realistic plan of care involving the primary caregiver, other informal helpers and paid helpers populating circles of care with various helpers in relation to care tasks 18 9
Reducing Disability in Alzheimer s Disease In-home education program by trainers (Terri et al., 2003) Teaches caregivers how to manage problem behaviors Delivers exercise training for the care receiver to improve strength, balance and flexibility Findings show care receivers had better physical function, less depression, and were less likely to be institutionalized 19 Respite Services Lifespan respite National Respite Network and Resource Center Ohio Respite Coalition 20 10
Affordable Care Act: New Support for Family Caregivers Law mentions caregivers 46 times and family caregiver 11 times (Feinberg & Reamy, 2011) References caregivers as decision makers about care options Addresses need for caregiver assessment and consideration of their experience in quality improvement of health care services Promotes new care models with family caregiver as key partner Promotes better preparation of caregivers to perform their tasks 21 Affordable Care Act Expands home- and community-based services and support to caregiving families Health/medical homes: required to offer families support Accountable Care Organizations: required to do caregiver assessments Geriatric Education Centers: must offer two courses annually to caregivers; practical training on giving care 22 11
References Dooley, K. W., Shaffer, D. R., Lance, C. E., & Williamson, G. M. (2007). Informal Care Can Be Better Than Adequate: Development and Evaluation of the Exemplary Care Scale, Rehabilitation Psychology, 52 (4), 359-369. Elliott, A. F., & Burgio, J. D. (2010). Enhancing Caregiver Health: Findings from the Resources for Enhancing Alzheimer s Caregiver Health II Intervention, Journal of the American Geriatrics Society, 58 (1), 30-37. Feinberg, L., & Reamy, A.M. Health Reform Creates New Opportunities to Better Recognize and Support Family Caregivers, AARP Public Policy Institute, Fact Sheet 239, October, 2011. 23 References Feinberg, L., Reinhard, S.C., Houser, A., & Choula, R. Valuing the Invaluable: 2011 Update, AARP Public Policy Institute, Insight on the Issues 51, June, 2011. Harris, G. M., Durkin, D. W., Allen, R. S., DeCoster, J., & Burgio, L. D. (2011). Exemplary Care as a Mediator of the Effects of Caregiver Subjective Appraisal and Emotional Outcomes, Gerontologist, 51(3), 332-342. Moorman, S. M., & Macdonald, C. (2012). Medically Complex Home Care and Caregiver Strain, Gerontologist, 53(3), 407-417. Musil, C. M., Gordon, N. L., Warner, C. B., Zauszniewski, J. A., Standing, T., & Wykle, W. (2010). Grandmothers and Caregiving to Grandchildren: Continuity, Change, and Outcomes over 24 Months, Gerontologist, 51(1), 86-100. 24 12
References National Alliance for Caregiving (in collaboration with AARP). November 2009. Caregiving in the U.S. 2009. Reinhard, S. C., Levine, C., & Samis, S. (2012) Home Alone: Family Caregivers Providing Complex Chronic Care, AARP Policy Institute, In Brief 199, November, 2012. Rosalynn Carter Institute for Caregiving, 2012, Caregiver Assessment: www.caregiver.org/caregiver/jps/content/pdfs/selcgassmtm eas_resinv_final_12.10.12.pdf Terri, L, Gibbons, L.E., McCurry, S. M., & Logsdon, R. G. (2003). Exercise Plus Behavior Management in Patients with Alzheimer s Disease: A Randomized Trial, Journal of the American Medical Association, 290(15), 2015-2022. 25 References Whitlatch, C.J., Judge, K., Zarit, S. H., & Femia, E. (2006). Dyadic intervention for family caregivers and care receivers in early-stage dementia. The Gerontologist, 46(5), 688-694. Zauszniewski, J. A., Bekhet, A. K., Lai, C. Y., McDonald, P. E., & Musil, C. M. (2007). Effects of Teaching Resourcefulness and Acceptance on affect, Behavior, and Cognition of Chronically Ill Elders, Issues in Mental Health Nursing, 28, 575-592. 26 13
Resources ARCH National Respite Network www.archrespite.org National Alliance for Caregiving www.caregiving.org Family Caregiving 101 www.familycaregiving101.org/ Family Caregiver Alliance www.caregiver.org 27 Thank you! Questions or comments lnoelker@benrose.org 28 14