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Ageing with a unique impairment: a systematically conducted review of older deafblind people's experiences

Published online by Cambridge University Press:  18 August 2016

PETER SIMCOCK*
Affiliation:
Social Care Workforce Research Unit, King's College London, UK.
*
Address for correspondence: Peter Simcock, Department of Social Sciences, Health and Medicine/ Social Care Workforce Research Unit, King's College London, Strand, London WC2R 2LS, UK E-mail: [email protected]

Abstract

Little is known about the experiences of people ageing with impairments; social gerontology has largely focused on those ageing into disability rather than those ageing with disability. This paper synthesises existing knowledge to determine what is known about the experiences of those ageing with deafblindness. A comprehensive literature search was undertaken between April 2013 and May 2014. The review method was informed by systematic review principles. A total of 24 references were identified for inclusion. No studies examining deafblind people's experience of ageing and old age specifically were found, suggesting that those ageing with deafblindness are an under-studied sub-group within the deafblind population. However, deafblind people describe ageing experiences in studies exploring their lives generally, and in personal accounts of living with the impairment. Practitioner-authored material also explores the topic. Similarities in experience were identified between those ageing with deafblindness and those ageing with other impairments: ongoing change and consequent need for adaptation; a particular relationship between ageing and impairment; a sense that whilst one can learn adaptive strategies having lived with impairment for many years, it does not necessarily get easier; and a particular relationship with care and support services. These experiences illustrate the unique nature of ageing with impairment, and challenge gerontologists to engage in further research and theorising in the field of disability in later life.

Type
Articles
Copyright
Copyright © Cambridge University Press 2016 

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References

Alley, R. and Keeler, G. 2009. Kent Deafblind Development Project. Kent Adult Social Services, Maidstone, UK.Google Scholar
Andrew, P. 2012. The Social Construction of Age. Multilingual Matters, Bristol, UK.Google Scholar
Armstrong, N. and O'Donnell, N. 2004. Rubella: 40 years after the epidemic. American Journal for Nurse Practitioners, 8, 4, 51–6.Google Scholar
Barnett, S. 2001. Deafblind culture in the UK. DbI Review 29, 7–11. Available online at http://deafblindinternational.org/review1_g.html [Accessed 4 November 12].Google Scholar
Barr, D. 1990. Visiting the land of green ginger (with a little help from my friends). New Beacon 74, 880, 336–7.Google Scholar
Barroso, J., Gollop, C. J., Sandelowski, M., Meynell, J., Pearce, P. F. and Collins, L. J. 2003. The challenges of searching for and retrieving qualitative studies. Western Journal of Nursing Research, 25, 2, 153–78.Google Scholar
Bejsnap, O. 2004. An account about being deafblind.In Ottesen, H. and Riber, H., eds., Not quite like the rest. Life seen through the deafblind eyes as teenagers, adults and parents, Information Center for Acquired Deafblindness, Herlev, Denmark, 72–76.Google Scholar
Berman, R. C. and Tyyskä, V. 2011. A critical reflection on the use of translators/interpreters in a qualitative cross-language research project. International Journal of Qualitative Methods, 10, 2, 178–90.CrossRefGoogle Scholar
Berry, P., Mascia, J. and Steinman, B. A. 2004. Vision and hearing loss in older adults: ‘double trouble’. Care Management Journals, 5, 1, 3540.Google Scholar
Bigby, C. and Haveman, M. 2010. Aging … a continuing challenge. Journal of Policy and Practice in Intellectual Disabilities, 7, 1, 12.Google Scholar
Bodsworth, S. M., Clare, I., Simblett, S. K. and Deafblind UK. 2011. Deafblindness and mental health: psychological distress and unmet need among adults with dual sensory impairment. British Journal of Visual Impairment, 29, 1, 626.Google Scholar
Bowling, A. and Dieppe, P. 2005. What is successful ageing and who should define it? British Medical Journal, 331, 7531, 1548–51.Google Scholar
Brennan, M. and Bally, S. J. 2007. Psychosocial adaptations to dual sensory loss in middle and late adulthood. Trends in Amplification, 11, 4, 281300.Google Scholar
Brennan, M., Horowitz, A. and Su, Y.-P. 2005. Dual sensory loss and its impact on everyday competence. The Gerontologist, 45, 3, 337–46.Google Scholar
Brown, D. 2005. Feeling the pressure: the forgotten sense of proprioception. California Deaf-Blind ReSources, 12, 1, 13.Google Scholar
Bryman, A. 2008. Social Research Methods. Oxford University Press, Oxford.Google Scholar
Butler, S. 2004. Usher 2: How is it for You? Sense, London.Google Scholar
Cohn, 1998. Problems experienced by hearing and visually impaired people. British Journal of Visual Impairment, 16, 1, 1922.CrossRefGoogle Scholar
Coker, J. 1995. The invisible helmet: a first-person account of deaf-blindness. Journal of Visual Impairment & Blindness, 89, 3, 201–8.CrossRefGoogle Scholar
Crow, L. 2000. Helen Keller: rethinking the problematic icon. Disability and Society, 15, 6, 845–59.Google Scholar
Dalby, D. M., Hirdes, J. P., Stolee, P., Strong, J. G., Poss, J., Tjam, E. Y., Bowman, L. and Ashworth, M. 2009. Characteristics of individuals with congenital and acquired deaf-blindness. Journal of Visual Impairment & Blindness, 103, 2, 93102.CrossRefGoogle Scholar
Damen, G. W., Krabbe, P. F., Kilsby, M. and Mylanus, E. A. 2005. The Usher lifestyle survey: maintaining independence: a multi-centre study. International Journal of Rehabilitation Research, 28, 4, 309–20.Google Scholar
Dammeyer, J. 2010a. Interaction of Dual Sensory Loss, Cognitive Function, and Communication in People Who Are Congenitally Deaf-Blind. Journal of Visual Impairment and Blindness, 104, 11, 719725.Google Scholar
Dammeyer, J. 2010b. Prevalence and aetiology of congenitally deafblind people in Denmark. International Journal of Audiology, 49, 2, 7682.CrossRefGoogle ScholarPubMed
Dammeyer, J. 2015. Deafblindness and dual sensory loss research: current status and future directions. World Journal of Otorhinolaryngology, 5, 2, 3740.CrossRefGoogle Scholar
Deafblind Services Liaison Group 1988. Breaking Through: Developing Services for Deafblind People. Royal National Institute for the Deaf, Peterborough, UK.Google Scholar
Department of Health 1997. Think Dual Sensory: Good Practice Guidelines for Older People with Dual Sensory Loss. Department of Health, London.Google Scholar
Department of Health 2014. Care and Support for Deafblind Children and Adults Policy Guidance. Department of Health, London.Google Scholar
Dixon-Woods, M., Cavers, D., Agarwal, S., Annandale, E., Arthur, A., Harvey, J., Hsu, R., Katbamna, S., Olsen, R., Smith, L., Riley, R. and Sutton, A. 2006. Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC Medical Research Methodology, 6, 6, 3548.Google Scholar
Duncan, E., Prickett, H., Finkelstein, D., Vernon, M. and Hollingsworth, T. 1988. Usher's Syndrome. What is It, How to Cope, and How to Help. Charles C. Thomas Publisher, Springfield, Illinois.Google Scholar
Ellis, L. and Hodges, L. 2013. Usher Project update – interim report . University of Birmingham, Birmingham, UK.Google Scholar
Enerstvedt, R. T. 1996. Legacy of the Past, Those Who Are Gone but Have Not Left, Some Aspects of the History of Blind Education, Deaf Education and Deafblind Education with Emphasis on the Time Before 1900. Forlaget Nord-Press, Dronninglund, Denmark.Google Scholar
Fisher, M., Qureshi, H., Hardyman, W. and Homewood, J. 2006. Using Qualitative Research in Systematic Reviews: Older People's Views of Hospital Discharge. How Knowledge Works in Social Care. Social Care Institute for Excellence, London.Google Scholar
Gangadharan, S. K., Devapriam, J. and Bhaumik, S. 2009. People with learning disability, and ageing. Psychiatry, 8, 10, 382–6.Google Scholar
Geenens, D. L. 1999. Neurobiological development and cognition in the deafblind. In McInnes, J. M. (ed.), A Guide to Planning and Support for Individuals Who Are Deafblind. University of Toronto Press, Toronto, 150174.CrossRefGoogle Scholar
Gilson, S. F. and Netting, F. E. 1997. When people with pre-existing disabilities age in place: implications for social work practice. Health & Social Work, 22, 4, 290–8.Google Scholar
Goble, D. J, Coxon, J. P., Wenderoth, N., Van Impe, A. and Swinnen, S. 2009. Proprioceptive sensibility in the elderly: degeneration, functional consequences and plastic-adaptive processes. Neuroscience and Biobehavioural Review 33, 271–8.Google Scholar
Göransson, L. 2008. Dövblindhet i ett livsperspektiv. Strategier och metoder för stöd [Deafblindness in a Life Perspective. Strategies and Methods for Support]. Mo Gårds Förlag, Finspång, Sweden.Google Scholar
Gough, D., Oliver, S. and Thomas, J. 2012. An Introduction to Systematic Reviews. Sage, London.Google Scholar
Green, L. 2010. Understanding the Life Course: Sociological and Psychological Perspectives. Polity Press, Cambridge.Google Scholar
Gribs, H., Dougherty, K. and Du Pre, E. 1995. A brief look at my life as a deaf-blind woman. Journal of Visual Impairment & Blindness, 89, 3, 197210.CrossRefGoogle Scholar
Gullacksen, A., Göransson, L., Rönnblom, G., Koppen, A. and Jørgensen, A. 2011. Life Adjustment and Combined Visual and Hearing Disability/Deafblindness – An Internal Process Over Time. Nordic Centre for Welfare and Social Issues, Stockholm.Google Scholar
Hersh, M. 2013. Deafblind people, communication, independence, and isolation. Journal of Deaf Studies and Deaf Education, 18, 4, 446–63.Google Scholar
Horowitz, A. 2003. Depression and vision and hearing impairments in later life. Generations, 27, 1, 32–8.Google Scholar
Jansbøl, K. 1999. Work with elderly deafblind. Outline of workshop presented in Lisbon, Portgual. Information Center on Acquired Deafblindness, Herlev, Denmark.Google Scholar
Jenson, D. L. and Christiansen, H. S. 2011. Development late in life. In Inclusion for a Lifetime of Opportunities. 15th Deafblind International Conference. Deafblind International, São Paulo, Brazil, 16.Google Scholar
Jeppsson Grassman, E., Holme, L., Taghizadeh Larsson, A. and Whitaker, A. 2012. Long life with a particular signature: life course and aging for people with disabilities. Journal of Gerontological Social Work, 55, 2, 95111.Google Scholar
Kåhlin, I., Kjellberg, A., Nord, C. and Hagberg, J.-E. 2013. Lived experiences of ageing and later life in older people with intellectual disabilities. Ageing & Society, 35, 3, 602628.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, 96110.Google Scholar
Killick, C. and Taylor, B. J. 2009. Professional decision making on elder abuse: systematic narrative review. Journal of Elder Abuse & Neglect, 21, 3, 211–38.CrossRefGoogle ScholarPubMed
Kyle, J. and Barnett, S. 2012. Deafblind worlds. Unpublished report.Google Scholar
Langer, J. 2008. Means of Communication of People with Deafblindness. Palacky University, Olomouc, Czech Republic.Google Scholar
Laustrup, B. 2004. The ageing process and the late manifestation of conditions related to the cause of congenitally deafblind adults in Denmark. DbI Review, 33, 47.Google Scholar
LeJeune, B. J. 2010. Aging with a dual sensory loss: thoughts from focus groups. AER (Association for Education and Rehabilitation of the Blind and Visually Impaired) Journal, Fall. Available online at http://aerbvi.org/modules.php?name=AvantG0&file=print&sid=2001 [Accessed 21 February 2013].Google Scholar
Mar, H. H. 1993. Psychosocial services. In Reiman, J. W. and Johnson, P. A. (eds), National Symposium on Children and Youth Who Are Deaf-blind. Teaching Research Publications, Monmouth, Oregon, 4260.Google Scholar
McInnes, J. M. 1999. A Guide to Planning and Support for Individuals Who Are Deafblind. University of Toronto Press, Toronto.Google Scholar
Miner, I. D. 1995. Psychosocial implications of Usher Syndrome, Type 1, throughout the life cycle. Journal of Visual Impairment & Blindness, 89, 3, 287–96.Google Scholar
Miner, I. 1997. People with Usher Syndrome, type 2: issues and adaptations. Journal of Visual Impairment and Blindness, 91, 6, 579–89.Google Scholar
Minkler, M. and Fadern, P. 2002. ‘Successful aging’: a disability perspective. Journal of Disability Policy Studies, 12, 4, 229–35.CrossRefGoogle Scholar
Moher, D., Liberati, A., Tetzlaff, J., Altman, D. and The PRISMA Group. 2009. Preferred Reporting Items for Systematic Reviews and Meta-Analyses: the PRISMA statement. PLOS Medicine, 6, 7, 16.Google Scholar
Moody, H. and Sasser, J. 2012. Aging. Concepts and Controversies. Sage, London.Google Scholar
Morris, J. 2004. Independent living and community care: a disempowering framework. Disability & Society, 19, 5, 427–42.Google Scholar
Murphy, P. 1991. How I live with deaf-blindness. In Taylor, G. and Bishop, J. (eds), Being Deaf: The Experience of Deafness. The Open University, Milton Keynes, UK, 169172.Google Scholar
Netten, A., Jones, K., Knapp, M., Fernandez, J. L., Challis, D., Glendinning, C., Jacobs, S., Manthorpe, J., Moran, N. and Stevens, M. 2012. Personalisation through individual budgets: does it work and for whom? British Journal of Social Work, 42, 8, 1556–73.Google Scholar
Newell, C. 2008. Better dead than disabled? When ethics and disability meet: a narrative of ageing, loss and exclusion. In MacKinlay, E. (ed.), Ageing, Disability and Spirituality. Addressing the Challenge of Disability in Later Life. Jessica Kingsley Publishers, London, 7280.Google Scholar
Nicholas, J. 2010. From Active Touch to Tactile Communication – What's Tactile Cognition Got to Do With It? The Danish Centre on Congential Deafblindndess, Aalborg, Denmark.Google Scholar
Oldman, C. 2002. Later life and the social model of disability: a comfortable partnership? Ageing & Society, 22, 6, 791806.Google Scholar
Oleson, B. R. and Jansbøl, K. 2005. Experiences from People with Deafblindness – A Nordic Project. Information Center for Acquired Deafblindness, Herlev, Denmark.Google Scholar
Oliver, M., Sapey, B. and Thomas, P. 2012. Social Work with Disabled People. Palgrave Macmillan, Basingstoke, UK.Google Scholar
Padgett, D. 2008. Qualitative Methods in Social Work Research. Sage, London.Google Scholar
Pavey, S., Douglas, G. and Hodges, L. 2009. The Needs of Older People with Acquired Hearing and Sight Loss. Thomas Pocklington Trust, London.Google Scholar
Pawson, R., Boaz, A., Grayson, L., Long, A. and Barnes, C. 2003. Types and quality of knowledge in social care. Social Care Institute for Excellence, London, UK.Google Scholar
Phillips, J., Ajrouch, K. and Hillcoat-Nalletamby, S. 2010. Key Concepts in Social Gerontology. Sage, London.Google Scholar
Ploeg, J., Fear, J., Hutchison, B., MacMillan, H. and Bolan, G. 2009. A systematic review of interventions for elder abuse. Journal of Elder Abuse & Neglect, 21, 3, 187210.Google Scholar
Pollington, C. 2008. Always change – the transitions experienced by an older woman with declining sight and hearing. Talking Sense, 52, 2, 30–3.Google Scholar
Prideaux, S., Roulstone, A., Harris, J. and Barnes, C. 2009. Disabled people and self-directed support schemes: reconceptualising work and welfare in the 21st century. Disability & Society, 24, 5, 557–69.Google Scholar
Priestley, M. and Rabiee, P. 2001. Building bridges: disability and old age. End of ESRC award report, University of Leeds Centre for Disability Studies, Leeds, UK.Google Scholar
Putnam, M. 2002. Linking aging theory and disability models: increasing the potential to explore aging with physical impairment. The Gerontologist, 42, 6, 799806.Google Scholar
Putnam, M. 2012. Can aging with disability find a home in gerontological social work? Journal of Gerontological Social Work, 55, 2, 91–4.Google Scholar
Regmi, K., Naidoo, J. and Pilkington, P. 2010. Understanding the processes of translation and transliteration in qualitative research. International Journal of Qualitative Methods, 9, 1, 1626.CrossRefGoogle Scholar
Roberts, D., Scharf, T. and Bernard, M. 2007. Identification of Deafblind Dual Sensory Impairment in Older People. Social Care Institute for Excellence, London.Google Scholar
Robertson, J. and Emerson, E. 2010. Estimating the Number of People with Co-occurring Vision and Hearing Impairments in the UK. Centre for Disability Research, Lancaster, UK.Google Scholar
Rowe, J. W. and Kahn, R. L. 1998. Successful Ageing. Random House, New York.Google Scholar
Rutter, D., Francis, J., Coren, E. and Fisher, M. 2010. SCIE Systematic Research Reviews: Guidelines. Second edition, Social Care Institute for Excellence, London.Google Scholar
Sauerburger, D. 1993. Independence Without Sight or Sound: Suggestions for Practitioners Working with Deaf-blind Adults. AFB Press, Huntington, West Virginia.Google Scholar
Saunders, G. and Echt, K. 2011. Dual sensory impairment in an aging population. ASHA Leader, 16, 3, 57.Google Scholar
Saunders, G. H. and Echt, K. V. 2007. An overview of dual sensory impairment in older adults: perspectives for rehabilitation. Trends in Amplification, 11, 4, 243–58.CrossRefGoogle ScholarPubMed
Schneider, J. M., Gopinath, B., McMahon, C. M., Leeder, S. R., Mitchell, P. and Wang, J. J. 2011. Dual sensory impairment in older age. Journal of Aging and Health, 23, 8, 1309–24.CrossRefGoogle ScholarPubMed
Schoone, A. M. and Snelting, M. E. 2011. Creating opportunities for a deafblind elderly person who had no chances in his life. In Inclusion for a Lifetime of Opportunities. 15th Deafblind International Conference. Deafblind International, São Paulo, Brazil, 9.Google Scholar
Secker, J., Hill, R., Hill, R. and Parkman, S. 2003. Promoting independence: but promoting what and how? Ageing & Society, 23, 3, 375–91.Google Scholar
Sense 2006. Fill in the Gaps: A Toolkit for Professionals Working with Older Deafblind People. Sense, London.Google Scholar
Sense 2009. Policy Briefing: Older People and Dual Sensory Loss. Sense, London.Google Scholar
Shakespeare, T. and Watson, N. 2001. The social model of disability: an outdated ideology? Research in Social Science and Disability, 2, 928.Google Scholar
Simcock, P. 2016. One of society's most vulnerable groups? A systematically conducted literature review exploring the vulnerability of deafblind people. Health and Social Care in the Community. doi:10.111/hsc.12317 [Accessed 5 January 2016].Google ScholarPubMed
Smith, T. 1993. Psychosocial services: reaction. In Reiman, J. W. and Johnson, P. A. (eds), National Symposium on Children and Youth Who Are Deaf-blind. Teaching Research Publications, Monmouth, Oregon, 2140.Google Scholar
Spring, S., Adler, J. and Wohlgensinger, C. 2012. Deafblindness in Switzerland: Facing Up to the Facts. A Publication on the Study ‘The Living Circumstances of Deafblind People at Different Stages of Their Lives in Switzerland’. Swiss National Association of and for the Blind, Zurich.Google Scholar
Stiefel, D. H. 1991. The Madness of Usher's. Coping with Vision and Hearing Loss (Usher Syndrome Type II). The Business of Living Publications, Corpus Christi, Texas.Google Scholar
Stoffel, S. 2012. Deaf-blind Reality: Living the Life. Gallaudet University Press, Washington DC.Google Scholar
Temple, B. 2002. Crossed wires: interpreters, translators, and bilingual workers in cross-language research. Qualitative Health Research, 12, 6, 844–54.Google Scholar
Temple, B. and Young, A. 2004. Qualitative research and translation dilemmas. Qualitative Research, 4, 2, 161–78.Google Scholar
Verbrugge, L. M. and Yang, L.-S. 2002. Aging with disability and disability with aging. Journal of Disability Policy Studies, 12, 4, 253–67.Google Scholar
Ward, C. 2012. Perspectives on ageing with a learning disability. Joseph Rowntree Foundation, York, UK.Google Scholar
Wickham, 2011. Depression in the deafblind community: working from a social work perspective. DbI Review, 46, 5658.Google Scholar
Wittich, W., Southall, K., Sikora, L., Watanabe, D. H. and Gagne, J. P. 2013. What's in a name: dual sensory impairment or deafblindness? British Journal of Visual Impairment, 31, 3, 198208.Google Scholar
Wolf, F. 2006. A challenging time – older people's experiences of deafblindness. Talking Sense, 52, 2, 24–7.Google Scholar
Woolham, J. and Benton, C. 2013. The costs and benefits of personal budgets for older people: evidence from a single local authority. British Journal of Social Work, 43, 8, 1472–91.Google Scholar
Yoken, C. 1979. Living with Deaf-blindness: Nine Profiles. Gallaudet College, Washington DC.Google Scholar
Zarb, G. 1993. ‘Forgotten but not gone’. the experience of ageing with a disability. In Arber, S. and Evandrou, M. (eds), Ageing, Independence and the Life Course. Jessica Kingsley Publishers (in association with the British Society of Gerontology), London, 2745.Google Scholar
Zarb, G. and Oliver, M. 1993. Ageing with a Disability: What Do They Expect After All These Years? Joseph Rowntree Foundation, York, UK.Google Scholar