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Sustaining Chicago’s Informal Caregivers: an Age-Friendly Approach

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Abstract

The concept of age-friendliness has been globally coined by the World Health Organization (WHO) to give value to the physical, social, and environmental factors that can promote or hinder older residents’ ability to age in place in cities. The initiative has been very successful in raising awareness among public health policy makers about the generic needs of older adults and urban features that promote active aging. However, the movement has been less focused on highlighting divergent needs of different older adult populations and their informal caregivers. The objective of this mixed method study is to analyze the ratings of 397 caregivers of urban age-friendly features relative to the ratings of 1737 noncaregivers collected as part of a baseline assessment of the age-friendliness of the city of Chicago. Using the approved WHO Vancouver Protocol, the research team also conducted six mixed caregiver/noncaregiver focus groups (n = 84) and three caregiver-only focus groups (n = 21). Survey findings show that informal caregivers rate all eight age-friendly domains with less satisfaction than do noncaregivers. Discussion in focus groups highlighted some of the reasons for these less favorable ratings and foregrounded the domains and themes that mattered most to caregivers. In conclusion, while our study revealed few systematic differences between caregiver and noncaregiver survey satisfaction ratings, caregivers report significantly poorer health than do noncaregivers. In addition, caregiver-only focus groups foregrounded “missing” priority issues specific to caregivers such as respite and the quality of training and flexibility of home help care. Results suggest that one productive next step for researchers would be to widen the usual range of factors considered essential for maintaining the well-being of informal caregivers of community-dwelling older adults. The age-friendly domains provide a starting point for this. Another would be to develop integrated support and improve service responsiveness to particular caregiver/care recipient dyad’s physical, psychological, and social needs.

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References

  1. World Health Organization. Age-Friendly World: adding life to years. 2014; http://agefriendlyworld.org/en/. Accessed May 7, 2015.

  2. Lehning AJ, Scharlach AE, Dal Santo TS. A web-based approach for helping communities become more "aging friendly". J Appl Gerontol. 2010;29(4):415–433.

  3. Menec V, Nowicki S. Examining the relationship between communities’ ‘age-friendliness’ and life satisfaction and self-perceived health in rural Manitoba, Canada. Rural Remote Health. 2014; 14: 2594.

    Google Scholar 

  4. Smith RJ, Lehning AJ, Dunkle RE. Conceptualizing age-friendly community characteristics in a sample of urban elders: an exploratory factor analysis. J Gerontol Social Work. 2013; 56(2): 90–111.

    Article  Google Scholar 

  5. Spina J, Menec VH. What community characteristics help or hinder rural communities in becoming age-friendly? Perspectives from a Canadian prairie province. J Appl Gerontol. 2015; 34(4): 444–464.

    Article  PubMed  Google Scholar 

  6. City of Chicago. Healthy Chicago 2.0: community health assessment and improvement plan. 2015; http://www.cityofchicago.org/city/en/depts/cdph/provdrs/healthychicago/svcs/healthy-chicago-2-0--community-health-assessment-and-improvement.html. Accessed May 7, 2015.

  7. Lehning AJ, Smith RJ, Dunkle RE. Do age-friendly characteristics influence the expectation to age in place? A comparison of low-income and higher income Detroit elders. J Appl Gerontol. 2015; 34(2): 158–180.

    Article  PubMed  Google Scholar 

  8. Chappell NL, Hollander MJ. An evidence-based policy prescription for an aging population. Healthc Pap. 2011; 11(1): 8–18.

    Article  PubMed  Google Scholar 

  9. Acton GJ, Kang J. Interventions to reduce the burden of caregiving for an adult with dementia: a meta-analysis. Res Nurs Health. 2001; 24(5): 349–360.

    Article  CAS  PubMed  Google Scholar 

  10. Schulz R, Burgio L, Burns R, et al. Resources for Enhancing Alzheimer’s Caregiver Health (REACH): overview, site-specific outcomes, and future directions. Gerontologist. 2003; 43(4): 514–520.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist. 2002; 42(3): 356–372.

    Article  PubMed  Google Scholar 

  12. National Institute on Aging, National Institutes of Health, US Department of Health and Human Services, World Health Organization. Global health and aging. 2011; http://www.who.int/ageing/publications/global_health.pdf. Accessed December 15, 2015.

  13. Becker S. Informal family carers. In: Wilson K, Ruch G, Lymbery M, Cooper A, eds. Social work: an introduction to contemporary practice. London: Pearson Longman; 2008: 431–460.

    Google Scholar 

  14. Archbold P, Stewart B, Greenlick M, Harvath T. The clinical assessment of mutuality and preparedness in family caregivers to frail older people. In: Funk S, editor. Key aspects of elder care: managing falls, incontinence, and cognitive impairment. New York: Springer Publishing Company; 1992. p. 328–339.

  15. US Legal Definitions. Informal caregiver law & legal definition. 2015; http://definitions.uslegal.com/i/informal-caregiver/. Accessed May 7, 2015.

  16. World Health Organization. Who age-friendly cities project methodology. Genebra: Vancouver Protocol; 2007.

    Google Scholar 

  17. World Health Organization. Global age-friendly cities: guide. 2007; www.who.int/ageing/age_friendly_cities_guide/en/. Accessed December 15, 2015.

  18. Block J. Q-sort methodology. In: The Q-sort in character appraisal: encoding subjective impressions of persons quantitatively. Washington, DC, USA: American Psychological Association; 2008: 45–53.

    Chapter  Google Scholar 

  19. Cella D, Riley W, Stone A, et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. J Clin Epidemiol. 2010; 63(11): 1179–1194.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Godau RI. Qualitative data analysis software: NVivo. Qual Res J. 2004; 4(2): 77.

    Google Scholar 

  21. Johnson R, Eisenstein A, Boyken L. Age-friendly Chicago: findings from a community-wide baseline assessment. 2014; http://www.feinberg.northwestern.edu/sites/aging/docs/AFReporttoCityforCCTFinal10-30-Phase-2.pdf. Accessed December 15, 2015.

  22. Johnson R, Eisenstein A, Hofacker J, Boyken L. Sustaining Chicago’s informal caregivers: an age-friendly approach. Chicago, IL: Northwestern University, Buehler Center on Aging, Health & Society; 2015.

    Google Scholar 

  23. Koff R. Developing a livable Chicago for all ages. 2008; http://www.aarp.org/content/dam/aarp/livable-communities/learn/civic/developing-a-livable-chicago-for-all-ages-engaging-older-adults-through-arts-and-culture-2008-aarp.pdf. Accessed December 15, 2015.

  24. Coalition of Limited English Speaking Elderly. A profile of limited english speaking older adults in Metropolitan Chicago. 2012; www.robparal.com/downloads/CLESE_LEP_Report.pdf. Accessed December 15, 2015.

  25. US Census Bureau. American Community Survey. 2012; https://www.census.gov/programs-surveys/acs/ Accessed December 15, 2015.

  26. City Data. Chicago, Illinois (IL) poverty rate data—information about poor and low income residents. 2014; www.city-data.com/poverty/poverty-Chicago-Illinois.html. Accessed October 23, 2014

  27. City of Chicago. Census Maps. 2015; http://www.cityofchicago.org/city/en/depts/doit/supp_info/census_maps.html. Accessed December 15, 2015.

  28. Potter S. Family ideals: the diverse meanings of residential space in Chicago during the post-World War II baby boom. J Urban Hist. 2012; 39(1): 59–78.

    Article  Google Scholar 

  29. Rankin B. Chicago boundaries. 2009; http://www.radicalcartography.net/index.html?chicagodots. Accessed December 07, 2015.

  30. AARP, NAC. Caregiving in the US 2015. 2015

  31. Mason A, Weatherly H, Spilsbury K, et al. The effectiveness and cost-effectiveness of respite for caregivers of frail older people. J Am Geriatr Soc. 2007; 55(2): 290–299.

    Article  PubMed  Google Scholar 

  32. Lopez-Hartmann M, Wens J, Verhoeven V, Remmen R. The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly: a systematic review. Int J Integr Care. 2012; 12: e133.

    PubMed  PubMed Central  Google Scholar 

  33. Martin-Carrasco M, Ballesteros-Rodriguez J, Dominguez-Panchon AI, Munoz-Hermoso P, Gonzalez-Fraile E. Interventions for caregivers of patients with dementia. Actas espanolas de psiquiatria. 2014; 42(6): 300–314.

    PubMed  Google Scholar 

  34. Buyck JF, Bonnaud S, Boumendil A, et al. Informal caregiving and self-reported mental and physical health: results from the Gazel Cohort Study. Am J Public Health. 2011; 101(10): 1971–1979.

    Article  PubMed  PubMed Central  Google Scholar 

  35. National Alliance for Caregiving, AARP. Caregiving in the US. Washington, DC: National Alliance for Caregiving, AARP; 2004.

    Google Scholar 

  36. Pinquart M, Sorensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2003; 58(2): P112–128.

    Article  PubMed  Google Scholar 

  37. Prohaska TR, Anderson LA, Binstock RH. Public health for an aging society. JHU Press; 2012

  38. Scharlach A. Historical overview. Am J Nurs. 2008; 108(9): 16–22.

    Article  PubMed  Google Scholar 

  39. Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA. 1999; 282(23): 2215–2219.

    Article  CAS  PubMed  Google Scholar 

  40. Wolff JL, Kasper JD. Caregivers of frail elders: updating a national profile. Gerontologist. 2006; 46(3): 344–356.

    Article  PubMed  Google Scholar 

  41. Collins S, Long A. Too tired to care? The psychological effects of working with trauma. J Psychiatr Ment Health Nurs. 2003; 10(1): 17–27.

    Article  CAS  PubMed  Google Scholar 

  42. Luchetti L, Uhunmwangho E, Dordoni G, et al. The subjective feeling of burden in caregivers of elderly with dementia: how to intervene? Arch Gerontol Geriatr. 2009; 49(Suppl 1): 153–161.

    Article  PubMed  Google Scholar 

  43. Cohen CA, Colantonio A, Vernich L. Positive aspects of caregiving: rounding out the caregiver experience. Int J Geriatr Psychiatry. 2002; 17(2): 184–188.

    Article  PubMed  Google Scholar 

  44. Brouwer WB, van Exel NJ, van den Berg B, van den Bos GA, Koopmanschap MA. Process utility from providing informal care: the benefit of caring. Health Policy (Amsterdam, Netherlands). 2005; 74(1): 85–99.

    Article  Google Scholar 

  45. Weisfeld V, Lustig TA. The Future of Home Health Care. Paper presented at: IOM-NRC Forum on Aging, Disability, and Independence September 30 - October 1, 2014, 2014; Washington, DC.

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Acknowledgments

This research was supported with funding from the Washington Square Health Foundation, The Chicago Community Trust, and the Department for Family Support Services, city of Chicago. Mayor Rahm Emanuel and the city of Chicago were awarded age-friendly status by the WHO in 2012. This study is part of an ongoing baseline assessment of the city’s age-friendliness.

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Correspondence to Rebecca Johnson.

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Johnson, R., Hofacker, J., Boyken, L. et al. Sustaining Chicago’s Informal Caregivers: an Age-Friendly Approach. J Urban Health 93, 639–651 (2016). https://doi.org/10.1007/s11524-016-0058-5

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