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Lived experiences of ageing and later life in older people with intellectual disabilities

Published online by Cambridge University Press:  16 December 2013

IDA KÅHLIN ,
ANETTE KJELLBERG ,
CATHARINA NORD  and
JAN-ERIK HAGBERG
IDA KÅHLIN*
Affiliation:
National Institute for the Study of Ageing and Later Life, Department of Social and Welfare Studies, Linköping University, Sweden.
ANETTE KJELLBERG
Affiliation:
Department of Social and Welfare Studies, Faculty of Health Sciences, Linköping University, Sweden.
CATHARINA NORD
Affiliation:
National Institute for the Study of Ageing and Later Life, Department of Social and Welfare Studies, Linköping University, Sweden.
JAN-ERIK HAGBERG
Affiliation:
National Institute for the Study of Ageing and Later Life, Department of Social and Welfare Studies, Linköping University, Sweden.
*
Address for correspondence: Ida Kåhlin, National Institute for the Study of Ageing and Later Life, Department of Social and Welfare Studies, Linköping University, 601 74 Norrköping, Sweden. E-mail: ida.kahlin@.liu.se
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Abstract

The aim of this article is to explore how older people with intellectual disability (ID), who live in group accommodation, describe their lived experience in relation to ageing and later life. The article is based on a study with a phenomenological approach, grounded on the concept of life-world. Individual, qualitative interviews were conducted with 12 people with ID (five men, seven women), between the ages of 48 and 71 (mean=64), who lived in four different group accommodation units in southern Sweden. A descriptive phenomenological analysis method was used, which disclosed a structure consisting of themes and sub-themes. The findings of the study reveal the informants' lived experience of ageing and later life as a multifaceted phenomenon, expressed through the two themes, ‘age as a process of change’ and ‘existential aspects of ageing’, each with three sub-themes. The body is an essential element in their experience of ageing and growing old, and in how this experience is expressed. The study also found social, cultural and historical dimensions of the life-world to be important in the informants' experience of ageing and later life. This supports understanding of the existence of a collective life-world for older people with ID, the unique experiences the informants share because of their disability and its consequences for their lifecourse.

Keywords

intellectual disabilityageinglater lifelife-worldphenomenology
Type
Articles
Information
Ageing & Society , Volume 35 , Issue 3 , March 2015 , pp. 602 - 628
Copyright
Copyright © Cambridge University Press 2013 

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References

Achenbaum, A. W. 2010. Past as prologue: toward a global history of ageing. In Dannefer, D. and Phillipson, C. (eds), The Sage Handbook of Social Gerontology. Sage, London, 20–3.Google Scholar
Alftberg, Å. 2012. Vad är det att åldras? En etnologisk studie av åldrande, kropp och materialitet [What is it to grow old? An ethnological study of ageing, body and materiality]. Doctoral dissertation, Department of Arts and Cultural Sciences, Lund University, Lund, Sweden. (In Swedish with a summary in English)Google Scholar
Bengtson, V. L., Elder, G. H. and Putney, N. M. 2005. The life course perspective on ageing: linked lives, timing, and history. In Johnson, M. L. (ed.), The Cambridge Handbook of Age and Ageing. Cambridge University Press, Cambridge, 493–501.Google Scholar
Berndtsson, I. 2001. Förskjutna horisonter. Livsförändring och lärande i samband med synnedsättning eller blindhet [Shifting horizons. Life changes and learning in relation to visual impairment or blindness]. Doctoral dissertation, Studies in Educational Science 156, Acta Universitatis Gothoburgenesis, Göteborg, Sweden. (In Swedish with a summary in English)Google Scholar
Bigby, C. 2004. Ageing with a Lifelong Disability. A Guide to Practice, Program and Policy Issues for Human Services Professionals. Jessica Kingsley, London.Google Scholar
Bigby, C. 2008. Beset by obstacles: a review of Australian policy development to support ageing in place for people with learning disability. Journal of Intellectual and Developmental Disability, 33, 1, 76–86.Google Scholar
Bigby, C. and Knox, M. 2009. ‘I want to see the queen’ – experience of service use by ageing people with an intellectual disability. Australian Social Work, 2, 62, 216–31.Google Scholar
Bigby, C. and Frawley, P. 2010. Social Work Practice and Intellectual Disability. Palgrave Macmillan, New York.Google Scholar
Booth, T. and Booth, W. 1996. Sounds of silence: narrative research with inarticulate subjects. Disability & Society, 11, 1, 55–69.Google Scholar
Brewster, S. J. 2004. Putting words into their mouths? Interviewing people with learning disabilities and little/no speech. British Journal of Learning Disabilities, 32, 4, 166–9.CrossRefGoogle Scholar
Burt, D. B., Primeaux-Hart, S., Loveland, K. A., Cleveland, L. A., Lewis, K. R., Lesser, J. and Pearson, P. L. 2005. Aging in adults with intellectual disabilities. American Journal on Mental Retardation, 110, 4, 268–84.Google Scholar
Buys, L., Boulton-Lewis, G., Tedman-Jones, J., Edwards, H., Knox, M. and Bigby, C. 2008. Issues of active ageing: perceptions of older people with lifelong intellectual disability. Australasian Journal of Ageing, 27, 2, 67–71.CrossRefGoogle ScholarPubMed
Centre for Easy-to-Read 2012. December. Available online at http://www.lattlast.se/start/english. [Accessed 1 December 2012].Google Scholar
Dannefer, D. and Settersten, R. A. 2010. The study of the life course: implications for social gerontology. In Dannefer, D. and Phillipson, C. (eds), The Sage Handbook of Social Gerontology. Sage, London, 3–19.Google 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, 10, 908–29.CrossRefGoogle ScholarPubMed
Erickson, M., Krauss, M. W. and Seltzer, M. M. 1989. Perception of old age among a sample of aging intellectual disabled persons. Journal of Applied Gerontology, 8, 2, 251–60.Google Scholar
Folkestad, H. 2000. Getting the picture: photo-assisted conversation as interviews. Scandinavian Journal of Disability Research, 2, 2, 3–21.Google Scholar
Giorgi, A. 2009. The Descriptive Phenomenological Methods in Psychology. A Modified Husserlian Approach. Duquesne University Press, Pittsburgh, Pennsylvania.Google Scholar
Goffman, E. 1961. Asylums. Essays on the Social Situation of Mental Patients and Other Inmates. Anchor Books, New York.Google Scholar
Goffman, E. 1990. Stigma. Notes on the Management of Spoiled Identity. Penguin Books, London.Google Scholar
Granlund, M. and Bond, A. 2000. Förståelig information för personer med utvecklingsstörning- perspektiv på kroppsfunktioner, aktivitet och delaktighet [Understandable Information for People with Intellectual Disabilities – Perspectives on Bodily Function, Activity and Participation]. Stiftelsen ALA, Stockholm (In Swedish)Google Scholar
Gustavsson, A. 2001. Studying personal experience of disability – what happened to verstehen when einfühlung disappeared? Scandinavian Journal of Disability Research, 3, 2, 29–40.Google Scholar
Hazan, H. 2000. The cultural trap: the language of images. In Gubrium, J. F. and Holstein, J. A. (eds), Aging and Everyday Life. Blackwell Publishing, Oxford, 15–8.Google Scholar
Heller, T., Factor, A., Sterns, H. and Sutton, E. 1996. Impact of person-centered later life planning training program for older adults with mental retardation. Journal of Rehabilitation, 62, 1, 77–83.Google Scholar
Heller, T., Miller, A. B., Hsieh, K. and Sterns, H. 2000. Later-life planning: promoting knowledge of options and choice-making. Mental Retardation, 38, 5, 395–406.Google Scholar
Holland, A. J. 2000. Ageing with intellectual disability. British Journal of Psychiatry, 176, 1, 26–31.Google Scholar
Hurst, J., Goodman, J. and Locke, C. 2009. Introduction. In Hurst, J., Goodman, J. and Locke, C. (eds), Occupational Therapy for People with Learning Disabilities. A Practical Guide. Churchill Livingstone/Elsevier, Edinburgh, 1–6.Google Scholar
Hydén, L.-C. 2005. Kroppens berättelser [Body stories]. In Jeppsson Grassman, E. and Hydén, L.-C. (eds), Kropp, livslopp och åldrande. Några samhällsvetenskapliga perspektiv [Body, Life Course and Ageing. Perspectives from Social Science]. Studentlitteratur, Lund, Sweden, 147–66. (In Swedish)Google Scholar
Jeppsson Grassman, E. 2005. Tid, rum, kropp och livslopp. Nya perspektiv på funktionshinder [Time, space, body and life course. New perspectives on disability]. In Jeppsson Grassman, E. and Hydén, L.-C. (eds), Kropp, livslopp och åldrande. Några samhällsvetenskapliga perspektiv [Body, Life Course and Ageing. Perspectives from Social Science]. Studentlitteratur, Lund, Sweden, 19–52. (In Swedish)Google Scholar
Jeppsson Grassman, E. and Whitaker, A. (eds) 2013. Ageing with Disability: A Life Course Approach. Policy Press, Bristol, UK.Google Scholar
Jönsson, H. and Taghizadeh Larsson, A. 2009. The exclusion of older people in disability activism and policies – a case of inadvertent ageism? Journal of Ageing Studies, 23, 1, 69–77.CrossRefGoogle Scholar
Judge, J., Walley, R., Anderson, B. and Young, R. 2010. Activity, aging, and retirement: the views of a group of Scottish people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 7, 4, 295–301.CrossRefGoogle Scholar
Kåhlin, I. 2010. Om jag har ‘Möjlighet att leva som andra’ får jag då ‘Bo bra hela livet’?- om bostadssituationen för äldre personer med utvecklingsstörning [If I have the possibility to live as others, can I then live well my whole life? Housing situations for older people with intellectual disabilities]. In Abrahamsson, M., Hagberg, J.-E., Lukkarinen Kvist, M. and Nord, C. (eds), Rum för åldrande. Essäer om äldres boende [Space for Ageing. Essays on Housing for the Elderly]. Skrifter från NISAL No. 1, Linköpings Universitet, Norrköping, Sweden, 28–32. (In Swedish)Google Scholar
Katz, S. 2010. Sociocultural perspectives on ageing bodies. In Dannefer, D. and Phillipson, C. (eds), The Sage Handbook of Social Gerontology. Sage, London, 357–66.Google Scholar
Kaufman, S. R. 2000. The ageless self. In Gubrium, J. F. and Holstein, J. A. (eds), Aging and Everyday Life. Blackwell Publishing, Oxford, 103–11.Google Scholar
Kelley-Moore, J. 2010. Disability and ageing: the social construction of causality. In Dannefer, D. and Phillipson, C. (eds), The Sage Handbook of Social Gerontology. Sage, London, 96–110.Google Scholar
Kemp, B. J. 2005. What the rehabilitation professional and the consumer need to know. Physical Medicine and Rehabilitation Clinics of North America, 16, 1, 1–18.Google Scholar
Kjellberg, A. 2002 a. Being a citizen. Disability & Society, 17, 2, 187–203.Google Scholar
Kjellberg, A. 2002 b. Participation – ideology and everyday life. How to understand the experiences of persons with learning disabilities. Doctoral dissertation, Linköping University, Linköping/Örebro, Sweden.Google Scholar
Kylén, G. 1997. Begåvning och begåvningshandikapp [The Intellect and Intellectual Handicaps]. Stiftelsen ALA/Handikappinstitutet, Stockholm. (In Swedish)Google Scholar
Lewis, A. 2002. Accessing, through research interviews, the views of children with difficulties in learning. Support for Learning, 17, 3, 111–6.Google Scholar
Lewis, A., Newton, H. and Vials, S. 2008. Realizing child voice: the development of cue cards. Support for Learning, 23, 1, 26–31.Google Scholar
Lifshitz, H. 2002. Attitudes toward aging in adult and elderly people with intellectual disability. Educational Gerontology, 28, 9, 745–59.Google Scholar
Lifshitz, H., Merrick, J. and Mourad, M. 2008. Health status and ADL functioning of older persons with intellectual disability: community residence versus residential care centers. Research in Developmental Disabilities, 29, 4, 301–15.Google Scholar
Matikka, L. M. and Vesala, H. T. 1997. Acquiescence in quality-of-life interviews with adults who have mental retardation. Mental Retardation, 35, 2, 75–82.Google Scholar
McCarron, M., Swinburne, J., Burke, E., McGlinchey, E., Mulryan, N., Andrews, V., Foran, S. and McCallion, P. 2011. Growing Older with an Intellectual Disability in Ireland 2011: First Results from the Intellectual Disability Supplement of the Irish Longitudinal Study on Ageing. School of Nursing & Midwifery, Trinity College Dublin, Dublin.Google Scholar
McVilly, K. R. 1995. Interviewing people with learning disabilities about their residential service. British Journal of Learning Disabilities, 23, 4, 138–42.Google Scholar
Merleau-Ponty, M. 2012 [1945]. Phenomenology of Perception. Routledge, London.Google Scholar
Närvänen, A.-L. 2004. Age, ageing and the life course. In Öberg, B.-M., Närvänen, A.-L., Näsman, E. and Olsson, E. (eds), Changing Worlds and the Ageing Subject. Dimensions in the Study of Ageing and Later Life. Ashgate Publishing, Burlington, Vermont, 65–80.Google Scholar
Nelson, T. D. (ed.) 2004. Ageism. Stereotyping and Prejudice Against Older Persons. MIT Press, Cambridge, Massachusetts.Google Scholar
Nind, M. 2008. Conducting qualitative research with people with learning, communication and other disabilities: methodological challenges. ESRC National Centre for Research Methods Review Paper, University of Southampton, Southampton, UK.Google Scholar
Nirje, B. 1969. The normalization principle and its human management implications. In Kugel, R. and Wolfensberger, W. (eds), Changing Patterns in Residential Service for the Mentally Retarded. President's Committee on Mental Retardation, Washington DC, 179–95.Google Scholar
Patton, M. Q. 2001. Qualitative Research & Evaluation Methods. Sage, London.Google Scholar
Perkins, E. and Moran, J. 2010. Aging adults with intellectual disabilities. American Medical Association, 304, 1, 91–2.CrossRefGoogle ScholarPubMed
Phillipson, C. 2008. Authoring aging: personal and social constructions. Journal of Aging Studies, 22, 2, 163–8.Google Scholar
Priestley, M. 2003. Disability. A Life Course Approach. Polity Press, Cambridge.Google Scholar
Putnam, M. 2002. Linking aging theory and disability models: increasing the potential to explore aging with physical impairment. The Gerontologist, 42, 6, 799–806.Google Scholar
Race, D. 2007. Intellectual Disability. Social Approaches. Open University Press, New York.Google Scholar
Ringsby Jansson, B. 2002. Vardagslivets arenor. Om människor med utvecklingsstörning, deras vardag och sociala liv [The arenas of everyday life. About people with intellectual disabilities, their everyday and social life]. Doctoral dissertation, Institutionen för socialt arbete, Göteborg University, Göteborg, Sweden. (In Swedish with a summary in English)Google Scholar
Sandvin, J. T. 2008. Ålder och funktionhinder [Age and disability]. In Söder, M. and Grönvik, L. (eds), Bara funktionshindrad. Funktionshinder och intersektionalitet [Only Disabled. Disability and Intersectionality]. Gleerups Utbildning AB, Malmö, Sweden, 64–88. (In Swedish)Google Scholar
Schalock, R. L., Borthwick-Duffy, S. A., Bradley, V. J., Buntinx, W. H. E., Coulter, D. L., Craig, E. M., Gomez, S. C., Lachapelle, Y., Luckasson, R., Reeve, A., Shogren, K. A., Snell, M. E., Spreat, S., Tassé, M. J., Thompson, J. R., Verdugo-Alonso, M. A., Wehmeyer, M. L. and Yeager, M. H. 2010. Intellectual Disability: Definition, Classification, and Systems of Supports. Eleventh edition, American Association of Intellectual and Developmental Disabilities, Washington DC.Google Scholar
SFS (Svensk författningssamling [Swedish Code of Statues]) 1993:387. Lagen om stöd och service till vissa funktionshindrade [The Act Concerning Support and Service for Persons with Certain Functional Impairments]. (In Swedish)Google Scholar
Shakespeare, T. 2006. Disability Rights and Wrongs. Routledge, London.Google Scholar
Sigelman, C. K., Budd, E. C., Spanhel, C. L. and Schoenrock, C. J. 1981. When in doubt, say yes: acquiescence in interviews with mentally retarded persons. Mental Retardation, 19, 2, 53–8.Google Scholar
Socialstyrelsen 2003. Bostad med särskild service för vuxna enligt LSS. Stöd för rättstillämpning och handläggning. [Residential Arrangements with Special Service According with the LSS. Support in Handling and Application of the Law]. Socialstyrelsen, Stockholm. (In Swedish)Google Scholar
Socialstyrelsen 2012. Official Statistics of Sweden. Statistics – Social Welfare. Persons with Certain Functional Impairments – Measures Specified by LSS 20l1. Socialstyrelsen, Stockholm.Google Scholar
Stalker, K. 1998. Some ethical and methodological issues in research with people with learning difficulties. Disability and Society, 13, 1, 5–19.Google Scholar
Swedish Research Council 2011. Good Research Practice. Swedish Research Council, Stockholm.Google Scholar
Taylor, S. J. and Bogdan, S. 1998. Introduction to Qualitative Research Methods. A Guidebook and Resource. Third edition, John Wiley and Sons, New York.Google Scholar
Tham, K., Borell, L. and Gustavsson, A. 2000. The discovery of disability: a phenomenological study of unilateral neglect. American Journal of Occupational Therapy, 54, 4, 398–406.Google Scholar
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, 3/4, 7–23.Google Scholar
Thorsen, K. 2005. Livshistorier, livslop og aldring. Samtaler med mennisker med utviklingshemning [Life Histories, Life Course and Ageing. Conversations with People with Intellectual Disability]. Forlaget Aldring og helse, Oslo. (In Norwegian)Google Scholar
Thorsen, K. and Jeppsson Grassman, E. (eds) 2012. Livsløp med funksjonshemming [Life Course with Disability]. Cappelen Damm Akademisk, Oslo. (In Norwegian)Google Scholar
Tideman, M. 2004. Socialt eller isolerat integrerad? Om institutionsavveckling och integrering. [Social or isolated integrated? On winding-up institutions and integration]. In Tössebro, J. (ed.), Integrering och inkludering [Integration and inclusion]. Studentlitteratur, Lund, Sweden, 121–40. (In Swedish)Google Scholar
Tössebro, J., Bonfils, I. S., Teittinen, A., Tideman, M., Traustadottir, R. and Vesala, H. T. 2012. Normalization fifty years beyond – current trends in the Nordic countries. Journal of Policy and Practice in Intellectual Disabilities, 9, 2, 134–46.Google Scholar
Twigg, J. 2006. The Body in Health and Social Care. Palgrave Macmillan, New York.Google Scholar
Umb-Carlsson, Ö. 2007. Hälsa och levnadsförhållanden hos personer med utvecklingsstörning [Health and Living Conditions of People with Intellectual Disability]. Statens Folkhälsoinstitut, Stockholm. (In Swedish)Google Scholar
Walmsley, J. 2001. Normalisation, emancipatory research and inclusive research in learning disability. Disability and Society, 16, 2, 187–205.Google Scholar
Wilkinson, H., Kerr, D. and Rae, C. 2003. People with a learning disability: their concerns about dementia. Journal of Dementia Care, January/February, 27–9.Google Scholar
World Health Organization 2001. Healthy ageing – adults with intellectual disabilities: summative report. Journal of Applied Research in Intellectual Disabilities, 14, 3, 256–75.Google Scholar
World Health Organization 2012. Disability and Health. Fact Sheet No. 352, November. Available online at http://www.who.int/mediacentre/factsheets/fs352/en/. [Accessed 1 November 2012].Google Scholar
World Health Organization 2013. The Process of Obtaining Informed Consent. May. Available online at http://www.who.int/rpc/research_ethics/Process_seeking_IF_printing.pdf. [Accessed 1 May 2013].Google Scholar