Hostname: page-component-7c8c6479df-94d59 Total loading time: 0 Render date: 2024-03-27T23:33:56.463Z Has data issue: false hasContentIssue false

‘I will never be old’: adults with Down syndrome and their parents talk about ageing-related challenges

Published online by Cambridge University Press:  21 March 2019

Adi Finkelstein*
Affiliation:
Department of Nursing, Faculty of Life and Health Sciences, Jerusalem College of Technology, Jerusalem, Israel
Ariel Tenenbaum
Affiliation:
Department of Pediatrics, Hadassah Hebrew University Medical Center, Mt. Scopus campus, Jerusalem, Israel
Yaacov G. Bachner
Affiliation:
Department of Public Health, Faculty of Health Sciences, Ben-Gurion University of the Negev, Beer Sheva, Israel
*
*Corresponding author. Email: adilan@netvision.net.il

Abstract

The life expectancy of people with Down syndrome (DS) has increased significantly over the last few decades. Consequently, they and their families face new ageing-related challenges, the first signs of which appear in people with DS around the age of 30. The goal of this study was to explore the perceptions of adults with DS regarding their own and their parents’ ageing and end of life, and to examine the views and concerns of the parents regarding the ageing of their children with DS. The unique approach used in our study was to convene not only the ageing people with DS but also their parents, to discuss the subject together. A total of 33 people with DS participated in the study. Most of them were interviewed with one or two parents. Participants with DS found it difficult to talk about their own old age and addressed the issue mainly through the decline in the functioning of an older person they knew. The parents emphasised the changes needed in terms of the official regulations, so as to ensure that their children with DS age with dignity and quality of life. Our study identifies the increasingly pressing need to prepare adults with DS for their own and their parents’ ageing and end of life in a timely manner.

Type
Article
Copyright
Copyright © Cambridge University Press 2019

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Ben-Noon, S, Naon, D, Brodsky, J and Mandler, D (2008) Aging of People with Mental Retardation Who Are Receiving Housing and/or Employment Services from the Ministry of Social Affairs and Social Services: Current Status and Needs. Jerusalem: The Center for Research on Aging, The Center for Research on Disabilities and Special Populations, Myers-JDC-Brookdale Institute Israel.Google Scholar
Bergholdt, R, Eising, S, Nerup, J and Pociot, F (2006) Increased prevalence of Down's syndrome in individuals with type 1 diabetes in Denmark: a nationwide population-based study. Diabetologia 49, 11791182.10.1007/s00125-006-0231-6CrossRefGoogle ScholarPubMed
Bigby, C (2002) Ageing people with a lifelong disability: challenges for the aged care and disability sectors. Journal of Intellectual and Developmental Disability 27, 231241.10.1080/1366825021000029294CrossRefGoogle Scholar
Bittles, AH, Bower, C, Hussain, R and Glasson, EJ (2007) The four ages of Down syndrome. European Journal of Public Health 17, 221225.10.1093/eurpub/ckl103CrossRefGoogle ScholarPubMed
Blackman, NJ (2003) Grief and intellectual disability: a systemic approach. Journal of Gerontological Social Work 38, 253263.10.1300/J083v38n01_09CrossRefGoogle Scholar
Clare, L (2003) Managing threats to self: awareness in early stage Alzheimer's disease. Social Science & Medicine 57, 10171029.10.1016/S0277-9536(02)00476-8CrossRefGoogle ScholarPubMed
Coppedè, F (2016) Risk factors for Down syndrome. Archives of Toxicology 90, 29172929.10.1007/s00204-016-1843-3CrossRefGoogle ScholarPubMed
Cumella, S and Heslam, S (2014) Supported housing for people with Down's syndrome. British Journal of Learning Disabilities 42, 251256.10.1111/bld.12039CrossRefGoogle Scholar
David, N, Duvdevani, I and Doron, I (2015) Older women with intellectual disability and the meaning of aging. Journal of Women & Aging 27, 216236.10.1080/08952841.2014.933608CrossRefGoogle ScholarPubMed
Davies, J and Morgan, H (2010) What kind of a future for young people with Down's Syndrome? The views and aspirations of young people and families. Tizard Learning Disability Review 15, 2229.10.5042/tldr.2010.0590CrossRefGoogle Scholar
Dew, A, Llewellyn, G and Gorman, J (2006) ‘Having the time of my life’: an exploratory study of women with intellectual disability growing older. Health Care for Women International 27, 908929.10.1080/07399330600880541CrossRefGoogle Scholar
Eatough, V and Smith, J (2006) ‘I was like a wild wild person’: understanding feelings of anger using interpretative phenomenological analysis. British Journal of Psychology 97, 483498.10.1348/000712606X97831CrossRefGoogle Scholar
Fender, A, Marsden, L and Starr, JM (2007) Assessing the health of older adults with intellectual disabilities: a user-led approach. Journal of Intellectual Disabilities 11, 223239.10.1177/1744629507080785CrossRefGoogle ScholarPubMed
Foley, S (2013) Reluctant ‘jailors’ speak out: parents of adults with Down syndrome living in the parental home on how they negotiate the tension between empowering and protecting their intellectually disabled sons and daughters. British Journal of Learning Disabilities 41, 304311.10.1111/j.1468-3156.2012.00758.xCrossRefGoogle Scholar
Fujiura, GT and RRTC Expert Panel on Health Measurement (2012) Self-reported health of people with intellectual disability. Intellectual and Developmental Disabilities 50, 352369.10.1352/1934-9556-50.4.352CrossRefGoogle ScholarPubMed
Garnham, B, Bryant, L, Ramcharan, P, Yu, N and Adams, V (2019) Policy, plans and pathways: the ‘crisis’ transition to post-parental care for people ageing with intellectual disabilities in rural Australian carescapes. Ageing & Society 39, 836850.10.1017/S0144686X17001258CrossRefGoogle Scholar
Gray, JA and Abendroth, M (2016) Perspectives of US direct care workers on the grief process of persons with intellectual and developmental disabilities: implications for practice. Journal of Applied Research in Intellectual Disabilities 29, 468480.10.1111/jar.12189CrossRefGoogle ScholarPubMed
Hand, JE, Trewby, M and Reid, PM (1994) When a family member has an intellectual handicap. Disability & Society 9, 167184.10.1080/09687599466780201CrossRefGoogle Scholar
Hartley, D, Blumenthal, T, Carrillo, M, DiPaolo, G, Esralew, L, Gardiner, K, Granholm, A-C, Iqbal, K, Krams, M, Lemere, C, Lott, I, Mobley, W, Ness, S, Nixon, R, Potter, H, Reeves, R, Sabbagh, M, Silverman, W, Tycko, B, Whitten, M and Wisniewski, T (2015) Down syndrome and Alzheimer's disease: common pathways, common goals. Alzheimer's & Dementia: The Journal of the Alzheimer's Association 11, 700709.10.1016/j.jalz.2014.10.007CrossRefGoogle ScholarPubMed
Haveman, MJ (2004) Disease epidemiology and aging people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities 1, 1623.10.1111/j.1741-1130.2004.04003.xCrossRefGoogle Scholar
Haveman, MJ, Heller, T, Lee, LA, Maaskant, MA, Shooshtari, S and Strydom, A (2009) Report on the State of Science on Health Risks and Ageing in People with Intellectual Disabilities. Dortmund, Germany: IASSID Special Interest Research Group on Ageing and Intellectual Disabilities, Faculty Rehabilitation Sciences, University of Dortmund.Google Scholar
Heller, T, Miller, AB, Hsieh, K and Sterns, H (2000) Later-life planning: promoting knowledge of options and choice-making. Mental Retardation 38, 395406.10.1352/0047-6765(2000)038<0395:LPPKOO>2.0.CO;22.0.CO;2>CrossRefGoogle ScholarPubMed
Kåhlin, I, Kjellberg, A, Nord, C and Hagberg, JE (2015) Lived experiences of ageing and later life in older people with intellectual disabilities. Ageing & Society 35, 602628.10.1017/S0144686X13000949CrossRefGoogle Scholar
Kåhlin, I, Kjellberg, A and Hagberg, JE (2016) Ageing in people with intellectual disability as it is understood by group home staff. Journal of Intellectual and Developmental Disability 41, 110.10.3109/13668250.2015.1094038CrossRefGoogle Scholar
Kessel, S, Merrick, J, Kedem, A, Borovsky, L and Carmeli, E (2003) Use of group counseling to support aging-related losses in older adults with intellectual disabilities. Journal of Gerontological Social Work 38, 241251.10.1300/J083v38n01_08CrossRefGoogle Scholar
LeRoy, BW, Walsh, PN, Kulik, N and Rooney, M (2004) Retreat and resilience: life experiences of older women with intellectual disabilities. American Journal on Mental Retardation 109, 429441.10.1352/0895-8017(2004)109<429:RARLEO>2.0.CO;22.0.CO;2>CrossRefGoogle ScholarPubMed
Lloyd, V, Gatherer, A and Kalsy, S (2006) Conducting qualitative interview research with people with expressive language difficulties. Qualitative Health Research 16, 13861404.10.1177/1049732306293846CrossRefGoogle ScholarPubMed
Malt, EA, Dahl, RC, Haugsand, TM, Ulvestad, IH, Emilsen, NM, Hansen, B, Cardenas, YE, Skøld, RO, Thorsen, AT and Davidsen, EM (2013) Health and disease in adults with Down syndrome. Tidsskrift for den Norske Laegeforening: Tidsskrift for Praktisk Medicin, ny Raekke 133, 290294.10.4045/tidsskr.12.0390CrossRefGoogle ScholarPubMed
McCarthy, M (1998) Interviewing people with learning disabilities about sensitive topics: a discussion of ethical issues. British Journal of Learning Disabilities 26, 140145.10.1111/j.1468-3156.1998.tb00070.xCrossRefGoogle Scholar
McEvoy, J, MacHale, R and Tierney, E (2012) Concept of death and perceptions of bereavement in adults with intellectual disabilities. Journal of Intellectual Disability Research 56, 191203.10.1111/j.1365-2788.2011.01456.xCrossRefGoogle ScholarPubMed
McEvoy, J, Reid, Y and Guerin, S (2002) Emotion recognition and concept of death in people with learning disabilities. British Journal of Development Disabilities 48, 8389.10.1179/096979502799104247CrossRefGoogle Scholar
McEvoy, J, Treacy, B and Quigley, J (2017) A matter of life and death: knowledge about the body and concept of death in adults with intellectual disabilities. Journal of Intellectual Disability Research 61, 8998.10.1111/jir.12347CrossRefGoogle ScholarPubMed
McHugh, KE (2003) Three faces of ageism: society, image and place. Ageing & Society 23, 165185.10.1017/S0144686X02001113CrossRefGoogle Scholar
McMaugh, PJ, Wiese, MY and Stancliffe, RJ (2017) The experiences of parents in supporting their son or daughter with intellectual disability to learn about dying and death. Journal of Intellectual & Developmental Disability 42, 285294.10.3109/13668250.2016.1236367CrossRefGoogle Scholar
Patti, P, Amble, K and Flory, M (2010) Placement, relocation and end of life issues in aging adults with and without Down's syndrome: a retrospective study. Journal of Intellectual Disability Research 54, 538546.10.1111/j.1365-2788.2010.01279.xCrossRefGoogle ScholarPubMed
Piazza, VE, Floyd, FJ, Mailick, MR and Greenberg, JS (2014) Coping and psychological health of aging parents of adult children with developmental disabilities. American Journal on Intellectual and Developmental Disabilities 119, 186198.10.1352/1944-7558-119.2.186CrossRefGoogle ScholarPubMed
Reed, J, Cook, M, Cook, G, Inglis, P and Clarke, C (2006) Specialist services for older people: issues of negative and positive ageism. Ageing & Society 26, 849865.10.1017/S0144686X06004855CrossRefGoogle Scholar
Rice, J and Robb, A (2004) Learning to listen: what particular difficulties do older people with learning disabilities face and what challenges confront service providers? Judith Rice and Andrew Robb report. Nursing Older People 15, 1013.10.7748/nop2004.02.15.10.10.c2241CrossRefGoogle Scholar
Robson, C (2002) Real World Research: A Resource for Social Scientists and Practitioner-researchers. London: Blackwell, pp. 391454.Google Scholar
Seltzer, MM, Greenberg, JS, Floyd, FJ and Hong, J (2004) Accommodative coping and well-being of midlife parents of children with mental health problems or developmental disabilities. American Journal of Orthopsychiatry 74, 187195.10.1037/0002-9432.74.2.187CrossRefGoogle ScholarPubMed
Smith, JA (2004) Reflecting on the development of interpretative phenomenological analysis and its contribution to qualitative research in psychology. Qualitative Research in Psychology 1, 3954.Google Scholar
Smith, JA and Osborn, M (2009) Interpretative phenomenological analysis. In Smith, JA, Flowers, P, Larkin, M (eds), Interpretative Phenomenological Analysis: Theory, Method and Research. Los Angeles: SAGE, pp. 5380.Google Scholar
Smith, JA and Dunworth, F (2003) Qualitative methods in the study of development. In Connolly, K and Valsiner, J (eds), The Handbook of Developmental Psychology. London: Sage, pp. 603621.Google Scholar
Snell, ME (2007) Advances in instruction. In Odom, SL, Horner, RH, Snell, M and Blacher, J (eds), Handbook of Developmental Disabilities. NY: The Guilford Press, pp. 249268.Google Scholar
Stancliffe, RJ, Wiese, MY, Read, S, Jeltes, G and Clayton, JM (2016) Knowing, planning for and fearing death: do adults with intellectual disability and disability staff differ? Research in Developmental Disabilities 49, 4759.10.1016/j.ridd.2015.11.016CrossRefGoogle ScholarPubMed
Sterns, HL, Kennedy, EA, Sed, CM and Heller, T (2000) Later-life planning and retirement. In Janicki, MP and Ansello, EF (eds), Community Supports for Aging Adults with Lifelong Disabilities. Baltimore, MD: Paul H. Brooks, pp. 179-191.Google Scholar
Teitelman, J and Copolillo, A (2005) Psychosocial issues in older adults’ adjustment to vision loss: findings from qualitative interviews and focus groups. American Journal of Occupational Therapy 59, 409417.10.5014/ajot.59.4.409CrossRefGoogle ScholarPubMed
Tenenbaum, A, Chavkin, M, Wexler, ID, Korem, M and Merrick, J (2012) Morbidity and hospitalizations of adults with Down syndrome. Research in Developmental Disabilities 33, 435441.10.1016/j.ridd.2011.09.026CrossRefGoogle ScholarPubMed
Thompson, D (2002) ‘Well, we've all got to get old haven't we?’ Reflections of older people with intellectual disabilities on aging and change. Journal of Gerontological Social Work 37, 723.10.1300/J083v37n03_03CrossRefGoogle Scholar
Todd, S (2003) Death does not become us: the absence of death and dying in intellectual disability research. Journal of Gerontological Social Work 38, 225239.10.1300/J083v38n01_07CrossRefGoogle Scholar
Walker, R and Hutchinson, C (2019) Care-giving dynamics and futures planning among ageing parents of adult offspring with intellectual disability. Ageing & Society 39, 1512ȓ1527.CrossRefGoogle Scholar
Walsh, PN (2002) Ageing and mental retardation. Current Opinion in Psychiatry 15, 509514.10.1097/00001504-200209000-00008CrossRefGoogle Scholar
Wiese, M, Stancliffe, RJ, Read, S, Jeltes, G and Clayton, JM (2015) Learning about dying, death, and end of-life planning: current issues informing future actions. Journal of Intellectual and Developmental Disability 40, 230235.10.3109/13668250.2014.998183CrossRefGoogle Scholar