Abstract
The most prevalent form of care of adults with intellectual and developmental disabilities has been family caregiving, with many of those caregivers themselves ageing. Family caregiving in the family home, at all ages, has been reported to enhance quality of life and at least for some, a greater likelihood that desires for community living, participation and integration are realized.
Smaller families and greater employment participation are impacting the availability of primary and replacement caregivers and of supporters that primary caregivers rely upon. Equally, primary caregivers themselves are experiencing greater demands, and poorer personal health. They face growing psychosocial needs and challenges.
There are individually focused approaches to helping caregivers cope often by changing appraisal of the situation while family stress and coping theories focus on indicators of positive family strategies and traits such as the extent of emotional bonding among family members and the ability among family members as circumstances change to alter role relationships and relationship rules. There are also unique intervention issues depending on who are the caregivers, when transitions are needed or contemplated and when long term planning is contemplated.
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References
Braddock D, Hemp R, Rizzolo MC, Tanis ES, Haffer L, Lulinski A, Wu J. State of the states in developmental disabilities, 2013. Washington, DC: American Association on Intellectual and Developmental Disabilities; 2013.
Fujiura GT. Structure of intellectual disability and developmental disabilities households in the United States. Presentation at AAIDD Annual Meeting, Charlotte, NC; 2012.
Bigby C, McCallion P, McCarron M. Serving an elderly population. In: Agran M, Brown F, Hughes C, Quirk C, Ryndak D, editors. Equality & full participation for individuals with severe disabilities: a vision for the future. Baltimore, MD: Paul H. Brookes; 2014. p. 319–48.
Zendell A. Decision-making among siblings of adults with intellectual or developmental disabilities. Unpublished dissertation. University at Albany, Albany, NY; 2010.
Tatlow-Golden M, Linehan C, O’Doherty S. Living arrangement options for people with intellectual disabilities: a scoping review. Dublin: School of Social Work and Social Policy Trinity College; 2014.
McCausland D, McCallion P, Cleary E, McCarron M. Social connections for older people with intellectual disability in Ireland: results from wave one of IDS-TILDA. J Appl Res Intellect Disabil. 2015;29:71–82.
Grant G, Ramcharan P. Views and experiences of people with intellectual disabilities and their families (2), the family perspective. J Appl Res Intellect Disabil. 2001;14:364–80.
Grant G, Whittell B. Differentiated coping strategies in families with children and adults with intellectual disabilities: the influence of gender, family composition and the lifespan. J Appl Res Intellect Disabil. 2000;13:256–75.
Williams V, Robinson C. ‘He will finish up caring for me’: people with learning disabilities and mutual care. Br J Learn Disabil. 2002;29:56–62.
McCallion P. Aging in place. In: Whitfield K, Baker T, editors. Handbook of minority aging. New York: Springer; 2014. p. 277–90.
McCallion P, McCarron M. People with disabilities entering the Third Age. In: Iriarte EG, McConkey R, Gilligan R, editors. Disability and human rights: global perspectives. London: Palgrave McMillan; 2015. p. 217–30.
Brennan D, Murphy R, McCallion P, McCarron M. “What’s going to happen when we’re gone?” Family caregiving capacity for older people with an intellectual disability in Ireland. J Appl Res Intellect Disabil. 2018;31:226–35.
Gray J, Geraghty R, Ralph D. Family rhythms: the changing textures of family life in Ireland. Manchester, UK: Manchester University Press; 2016.
Perkins EA, Haley WE. Compound caregiving: when lifelong caregivers undertake additional caregiving roles. Rehabilit Psychol. 2010;55:409–17.
McCallion P, Kolomer SR. Aging persons with developmental disabilities and their aging caregivers. In: Berkman B, Harootyan L, editors. Social work and health care in an aging world. New York: Springer; 2003. p. 201–25.
Lee E, Roberts LJ. Between individual and family coping: a decade of theory and research on couples coping with health-related stress. J Fam Theory Rev. 2018;10:141–64.
Lazarus RS. From psychological stress to the emotions: a history of changing outlooks. Annu Rev Psychol. 1993;44:1–21.
Hill R. Generic features of families under stress. Soc Casework. 1958;49:139–50.
McCubbin HI, Patterson JM. The family stress process: the double ABCX model of family adjustment and adaptation. In: McCubbin HI, Sussman M, Patterson JM, editors. Social stress and the family: advances and developments in family stress theory and research. New York: Haworth; 1983. p. 7–37.
Patterson J. Families experiencing stress: the family adjustment and adaptation response theory. Fam Syst Med. 1988;5:202–37. https://doi.org/10.1037/h0089739.
Lazarus RS. Psychological stress and the coping process. New York: McGraw-Hill; 1966.
Lazarus RS, Folkman S. Stress, appraisal, and coping. New York: Springer; 1984.
Folkman S. The case for positive emotions in the stress process. Anxiety Stress Coping. 2008;21:3–14.
McCallion P, Toseland RW. An empowered model for social work services to families of adolescents and adults with developmental disabilities. Fam Soc. 1993;74:579–89.
Burke MM, Taylor JL, Urbano R, Hodapp RM. Predictors of future caregiving by adult siblings of individuals with intellectual and developmental disabilities. Am J Intellect Dev Disabil. 2012;117:33–47.
Essex EL, Seltzer MM, Krauss MW. Differences in coping effectiveness and well being among aging mothers and fathers of adults with mental retardation. Am J Ment Retard. 1999;104:545–63.
Lightfoot E, McCallion P. Older adults and developmental disabilities. In: Berkman B, Kaplan D, editors. Handbook of social work in health & aging. 2nd ed. New York: Oxford University Press; 2016. p. 489–99.
McCallion P, Grant-Griffin L. Redesigning services to meet the needs of multi-cultural families. In: Janicki MP, Ansello E, editors. Aging and developmental disabilities. Baltimore, MD: Paul H. Brookes; 2000. p. 97–108.
McCallion P, Jokinen N, Janicki MP. Aging. In: Wehmeyer ML, Brown I, Percey M, Shogren KA, Fung M, editors. A comprehensive guide to intellectual and developmental disabilities. Baltimore, MD: Paul H. Brookes Press; 2017. p. 639–54.
Heller T, Miller AB, Hsieh K. Impact of a consumer-directed family support program on adults with developmental disabilities and their family caregivers. Fam Relat. 1999;48:419–27.
Mahoney K. Special issue on self-direction in long-term services and support. J Gerontol Soc Work. 2019;62:124–7.
Heller T, Factor A. Family support and intergenerational caregiving: report for the State of the Science in Aging with Developmental Disabilities Conference. Disabil Health J. 2008;1:131–5.
O’Brien J, O’Brien CL. A little book about person centered planning. Toronto: Inclusion Press; 1998.
Hewitt A, Lightfoot E, Bogenschutz M, McCormack K, Sedlezky L, Doljanic R. Parental caregivers’ desires for lifetime assistance planning for future supports for their children with intellectual and developmental disabilities. J Fam Soc Work. 2010;13:420–34.
Ferretti LA, McCallion P. Translating the chronic disease self-management program for community-dwelling adults with developmental disabilities. J Aging Health. 2019;31(10S):22S–38S.
Bigby C. Moving on without parents: planning, transitions, and sources of support for middle-aged and older adults with intellectual disability. Baltimore, MD: Paul H. Brookes; 2000.
Lindahl J, Stollon N, Wu K, Liang A, Changolkar S, Steinway C, Jan S. Domains of planning for future long-term care of adults with intellectual and developmental disabilities: parent and sibling perspectives. J Appl Res Intellect Disabil. 2019;32:1103–15.
Taggart L, Truesdale-Kennedy M, Ryan A, McConkey R. Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. J Intellect Disabil. 2012;16(3):217–34. https://doi.org/10.1177/1744629512456465.
Heller T, Caldwell J. Supporting aging caregivers and adults with developmental disabilities in future planning. Ment Retard. 2006;44:189–202.
McCausland D, McCallion P, Brennan D, McCarron M. Balancing personal wishes and caring capacity in future planning for adults with an intellectual disability living with family carers. J Intellect Disabil. 2019;23:413–31. https://doi.org/10.1177/1744629519872658.
Toseland RW, Smith G, McCallion P. Helping family caregivers. In: Gitterman A, editor. Handbook of social work practice with vulnerable populations. New York: Columbia University Press; 2001. p. 548–81.
Shi J, Ferretti L, McCallion P. Understanding differences between caregivers and non-caregivers in completer rates of chronic disease self-management program. Public Health. 2017;147:128–35.
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McCallion, P., Ferretti, L.A. (2021). Psychosocial Concerns Among Ageing Family Caregivers. In: Prasher, V.P., Davidson, P.W., Santos, F.H. (eds) Mental Health, Intellectual and Developmental Disabilities and the Ageing Process. Springer, Cham. https://doi.org/10.1007/978-3-030-56934-1_15
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