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Caregiving : Part of the Journey of Life

Explore the world of caregiving, from the fantasy to reality, with a focus on caregivers' demographics, challenges, and positive aspects. Discover the importance of cultural norms, coping strategies, and family support in caregiving research. Learn about the correlates, racial/ethnic differences, and interventions for caregivers to cultivate positive outcomes.

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Caregiving : Part of the Journey of Life

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  1. Caregiving :Part of the Journey of Life

  2. The Fantasy

  3. The reality

  4. Who are the caregivers?

  5. Who are the caregivers? • 53-68% of caregivers are female (Family Caregiver Alliance, 2012). • 2/3 are employed full or part-time (National Caregiving Alliance, 2004) • 44% live in households under twice the federal poverty level, compared with 33% of non-caregivers (The Commonwealth Fund, 2005). • Equally distributed among urban, suburban and rural areas. • The average age of caregivers of ill/disabled older adults is 63, with 1/3 of them in fair to poor health themselves (Administration on Aging, 2004). https://www.apa.org/pi/about/publications/caregivers/faq/statistics

  6. History of research on caregiving • Caregiving research was initially pretty WEIRD (Henrich, Heine, Norenzayan, 2010) • Western/White • Educated • Industrialized • Rich • Democratic • The Family Life of Old People: An Inquiry in East London (Townsend, 1957) • Burden as a major theme of early dementia caregiving research • Objective vs subjective burden • Care for persons with dementia particularly challenging/burdensome

  7. Caregiving research • Stress and coping model • Caregiver Burden • Risk of depression • Reduced immune response • Poorer health outcomes

  8. Cross-cultural studies noted differences

  9. Ethnic group differences among U.S. caregivers White caregivers: • Have weaker filial obligation beliefs, • Got less support from friends/family, • Use more paid/professional support services compared to other ethnic groups. Whites had higher socioeconomic status, and better physical health. Whites have high levels of burden and depression, although Hispanic and Asian Americans identified as having higher levels of depression. Pinquart & Sorensen (2005)

  10. Why did some people fare better or worse? • Coping behaviors? • Family/kinship support networks? • Spirituality/ Religion? • Cultural norms? • Positive appraisals?

  11. Positive Aspects of Caregiving

  12. Positive Appraisals/Finding Benefits • 83% of caregivers surveyed by NORC (2014) viewed it as being a “positive experience.” They endorsed: • A sense of giving back to someone who has cared for them, • The satisfaction of knowing that their loved one is getting excellent care, • Personal growth and increased meaning and purpose in one’s life. • Passing on a tradition of care and that by modeling caregiving, their children will be more likely care for them if necessary. (NORC, 2014)

  13. Positive aspects and burden/stress co-exist

  14. Positive Aspects of Caregiving (PAC) scale (Tarlow et al, 2004) Providing help/care to or ensuring provision of care to (care-recipient) has... 1. Made me feel more useful 2. Made me feel good about myself 3. Made me feel needed 4. Made me feel appreciated 5. Made me feel important 6. Made me feel strong and confident 7. Enabled me to appreciate life more 8. Enabled me to develop a more positive attitude toward life 9. Strengthened my relationships with others

  15. 2 of 10 subscales of Caregiver Reaction Scale (CRS; Qualls & O’Malley, 2016) People can often learn things about themselves from taking care of a relative. How much do you: • Believe you’ve learned how to deal with this very difficult situation • Feel that, all in all, you’re a good caregiver • In general, feel competent as a caregiver • Feel self-confident as a caregiver Since becoming a caregiver, how much have you: • Become more aware of your inner strengths • Become more self-confident • Grown as a person • Learned to do things you didn’t do before

  16. Positive Aspects of Caregiving - Constructs • Self-affirmation • Outlook on life (Tarlow et al, 2004; Siow et al 2017) • Self-efficacy • Spirituality • Resilience • Rewards • Gain • Meaning (Stansfeld et al, 2017) • A sense of personal accomplishment and gratification, • Feelings of mutuality in a dyadic relationship, • An increase of family cohesion and functionality, and • A sense of personal growth and purpose in life (Yu, Cheng, & Wang 2018)

  17. Correlates of PAC • Prior relationship satisfaction • Satisfaction with social supports • Increased functional impairment of the care recipient • Use of problem-solving coping strategies • Older age of caregiver • Better health of caregiver

  18. PAC varies by racial/ethnic group

  19. Positive Aspects of Caregiving generally associated with better outcomes

  20. What can we do to cultivate good outcomes? • Accept that giving and receiving care is a normal and inevitable part of the journey of life • Value intergenerational interdependence • Foster strong family relationships and communication • Be prepared for the role • Financial • Lifestyle • Mental/emotional • Active problem-solving coping behaviors, not avoidance • Appreciate the meaningfulness of the role • Find the benefits in the situation • Seek and use the resources available to teach/assist/support caregivers

  21. Caregiver Interventions

  22. Resources for family caregivers • Geriatric Assessment Program (GAP) • USC Family Caregiver Support Center (fcscgero.org) • Powerful Tools for Caregivers • CareJourney • Alzheimer’s Los Angeles (www.alzla.org) • Savvy Caregiver classes • Support groups, care counseling, online forums • Adult day care

  23. Conclusions • Family caregiving for a person with dementia evokes complex sets of emotions that often include both positive and negative feelings. • Recent research suggests that + positive aspects of caregiving (PAC) are associated with better outcomes in caregivers, even when levels of stress remain high. • Being prepared for the caregiving role, valuing the meaningfulness of the role, and cultivating good socioemotional regulation skills are associated with better outcomes. • Research is mostly cross-sectional, correlational. Longitudinal studies and intervention trials will help understand if we can bolster caregivers’ appraisals and increase PAC, and if this is protective.

  24. References https://www.aarp.org/content/dam/aarp/research/surveys_statistics/ltc/2017/family-caregiving-roles.doi.10.26419%252Fres.00175.001.pdf Beach, S. R., Schulz, R., Yee, J. L., & Jackson, S. (2000). Negative and positive health effects of caring for a disabled spouse: Longitudinal findings from the Caregiver Health Effects Study. Psychology & Aging, 15(2), 259-271. doi:10.1037//0882-7974.15.2.259 Cho J1,2, Ory MG2, Stevens AB1,3. Socioecological factors and positive aspects of caregiving: findings from the REACH II intervention. Aging Ment Health. 2016 Nov;20(11):1190-1201. Epub 2015 Jul 27. Gallagher-Thompson, D., and Coon, D. W. (2007). ‘Evidence-based Psychological Treatments for Distress in Family Caregivers of Older Adults’. Psychology and Aging 22: 37–51. Hayes, S. C., Strosahl, K. D., and Wilson, K. G. (1999). Acceptance and Commitment Therapy: An Experiential Approach to Behavior Change. New York: Guilford Press. Hayes, S. C. and Smith, S. (2005). Get Out of Your Mind and into Your Life: The New Acceptance and Commitment Therapy. Oakland, CA: New Harbinger. Haley, W. E., LaMonde, L. A., Han, B., Burton, A. M., Schonwetter, R. (2003). Predictors of depression and life satisfaction among spousal caregivers in hospice: Application of a stress process model. Journal of Palliative Medicine, 6,215-224. Harmell, A. L., Chattillion, E. A., Roepke, S. K., & Mausbach, B. T. (2011). A review of the psychobiology of dementia caregiving: A focus on resilience factors. Current Psychiatry Reports, 13(3), 219-224. doi:10.1007/s11920-011-0187-1 Lloyd, A (2016) The use of Acceptance and Commitment Therapy to address psychological distress experienced by caregivers: a randomised controlled feasibility trial. D ClinPsy thesis. National Opinion Research Center. (2014, May). Long term care in America: Expectations and realities. Retrieved from http://www.longtermcarepoll.org/PDFs/LTC%202014/AP-NORC-Long-Term%20Care%20in%20America_FINAL%20WEB.pdf

  25. References, cont. Márquez-González, M., Romero-Moreno, R., and Losada, A. (2010). ‘Caregiving Issues in a Therapeutic Context: New Insights from the Acceptance and Commitment Therapy Approach’. In N. Pachana, K. Laidlaw, and B. Knight (eds), Casebook of Clinical Geropsychology: International Perspectives on Practice (pp. 33–53). New York: Oxford University Press. Pinquart, M & Sorensen, S (2005). Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: a meta-analysis. Gerontologist. 2005 Feb;45(1):90-106. Roth DL1, Dilworth-Anderson P2, Huang J3, Gross AL4, Gitlin LN5. (2015) Positive Aspects of Family Caregiving for Dementia: Differential Item Functioning by Race. J Gerontol B Psychol Sci Soc Sci. 70(6):813-9. doi: 10.1093/geronb/gbv034. Epub 2015 Jun 1. Tarlow, B.J., Wisniewski, S., Belle, S., Rubert, M., Ory, M., & Gallagher-Thompson, D. (2004) Positive Aspects of Caregiving Contributions of the REACH Project to the Development of New Measures for Alzheimer’s Caregiving. RESEARCH ON AGING, Vol. 26 No. 4, July 2004 429-453. Siow, JYM, Chan, A, Ostbyte, T, Cheng, GHL, & Malhotra, R. (2017). Validity and Reliability of the Positive Aspects of Caregiving (PAC) Scale and Development of Its Shorter Version (S-PAC) Among Family Caregivers of Older Adults. Gerontologist, Vol. 57, No. 4, e75–e84 doi:10.10 Yu DSF1, Cheng ST2, Wang J3 Unravelling positive aspects of caregiving in dementia: An integrative review of research literature.Int J Nurs Stud. 2018 Mar;79:1-26. doi: 10.1016/j.ijnurstu.2017.10.008. Epub 2017 Oct 16. 93/geront/gnw198

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