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There's no apprenticeship for Alzheimer's: the caring relationship when an older person experiencing dementia falls

Published online by Cambridge University Press:  22 July 2011

ANNE MCINTYRE  and
FRANCES REYNOLDS
ANNE MCINTYRE*
Affiliation:
School of Health Sciences and Social Care, Brunel University, Uxbridge, UK.
FRANCES REYNOLDS
Affiliation:
School of Health Sciences and Social Care, Brunel University, Uxbridge, UK.
*
Address for correspondence: Anne McIntyre, Lecturer in Occupational Therapy, School of Health Sciences and Social Care, Brunel University, Uxbridge UB8 3PH, UK. E-mail: [email protected]
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Abstract

Older people experiencing dementia are twice as likely to fall with consequences of serious injury, reduction in everyday activity, admission to long-term care and mortality. Carers of people with dementia are themselves at greater risk of physical and mental ill health, which increases as the dementia progresses. Unsurprisingly, carer burden also increases when a care-recipient falls. The aim of this study was to explore the experiences of falling of community-living older people with dementia and their carers. A qualitative approach was taken using interpretative phenomenological analysis. Nine older people with predominantly Alzheimer's disease and their ten carers were recruited from a large mental health National Health Service trust and participated in one-to-one and joint in-depth interviews. Three dyads participated in repeat interviews. Three focus groups were also carried out, with nine older people experiencing memory problems and 12 carers from a local Alzheimer's Society branch. The antecedents, falls events and consequences of falls were discussed. This paper reports specifically on the impact of falls on the caring relationship. Three themes emerged: ‘learning as you go’, ‘we're always together’, ‘nobody was interested’. The findings demonstrate how falling accentuates the impact of dementia on the dyad. Spouse-carers' discussion of their own falls emphasise the need for joint assessment of health and wellbeing to reduce carer burden and preserve the couplehood of the dyad.

Keywords

fallsdementiacarerspersonhoodcouplehoodinterpretative phenomenological analysis
Type
Articles
Information
Ageing & Society , Volume 32 , Issue 5 , July 2012 , pp. 873 - 896
Copyright
Copyright © Cambridge University Press 2011

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References

Alexander, N. and Clare, L. 2004. You still feel different: the experience and meaning of women's self injury in the context of a lesbian or bisexual identity. Journal of Community and Applied Social Psychology, 14, 70–84.CrossRefGoogle Scholar
Allan, L. M., Ballard, C. G., Rowan, E. N. and Kenny, R. A. 2009. Incidence and prediction of falls in dementia: a prospective study in older people. Plos ONE, 4, 5, e5521. doi:10.1371/journal.pone.0005521.CrossRefGoogle ScholarPubMed
Alzheimer's Society 2011. Support. Stay. Save. Care and Support of People with Dementia in Their Own Homes Alzheimer's Society, London.Google Scholar
American Geriatric Society and British Geriatric Society 2010. Prevention of Falls in Older Persons: AGS/BGS Clinical Practice Guideline. Available online at http://www.americangeriatrics.org/health_care_professionals/clinical_practice/clinical_guidelines_recommendations/2010/ [Accessed 11 August 2010].Google Scholar
Baker, K. L. and Robertson, N. 2008. Coping with caring for someone with dementia: reviewing the literature about men. Aging and Mental Health, 12, 4, 413–22.CrossRefGoogle ScholarPubMed
Bartlett, R. and O'Connor, D. 2010. Broadening the Dementia Debate: Towards Social Citizenship. Policy Press, Bristol, UK.Google Scholar
Biggerstaff, D. and Thompson, A. R. 2008. Interpretative Phenomenological Analysis (IPA): a qualitative methodology of choice in healthcare research. Qualitative Research in Psychology, 5, 3, 214–24.CrossRefGoogle Scholar
Brijnath, B. and Manderson, L. 2008. Discipline in chaos: Foucault, dementia and ageing in India. Culture, Medicine and Psychiatry, 32, 607–26.CrossRefGoogle Scholar
Buri, H. and Dawson, P. 2000. Caring for a relative with dementia: a theoretical model of coping with fall risk. Health, Risk & Society, 2, 3, 283–93.CrossRefGoogle Scholar
Clare, L. 2003. Managing threats to self: awareness in early stage Alzheimer's disease. Social Science & Medicine, 57, 6, 1017–29.CrossRefGoogle ScholarPubMed
Clarke, C. 2009. An introduction to Interpretative Phenomenological Analysis: a useful approach for occupational therapy research. British Journal of Occupational Therapy, 72, 1, 37–9.CrossRefGoogle Scholar
Department of Health 2001. National Service Framework for Older People. Department of Health, London.Google Scholar
Department of Health 2009. Living Well with Dementia: A National Dementia Strategy. Department of Health, London.Google Scholar
Dewing, J. 2007. Partcipatory research: a method for process consent with persons who have dementia. Dementia, 6, 1, 11–25.CrossRefGoogle Scholar
Faes, M. C., Reelick, M. F., Joosten-Weyn Banningh, L. W., de Gier, M., Esselink, R. A. and Olde Rikkert, M. G. 2010. Qualitative study on the impact of falling in frail older persons and family caregivers: foundations for an intervention to prevent falls. Aging and Mental Health, 14, 7, 834–42.CrossRefGoogle ScholarPubMed
Farran, C. J., Staffileno, B. A., Gilley, D. W., McCann, J. J., Li, Y., Castro, C. M. and King, A. C. 2008. A lifestyle physical activity intervention for caregivers of persons with Alzheimer's disease. American Journal of Alzheimer's Disease and Other Dementias, 23, 132–42.CrossRefGoogle ScholarPubMed
Ferri, C. P., Prince, M., Brayne, C., Brodaty, H., Fratiglioni, L., Ganguli, M., Hall, K., Hasegawa, K., Hendrie, H., Huang, Y., Jorm, A., Mathers, C., Menezes, P. R., Rimmer, E. and Scazufca, M. 2005. Global prevalence of dementia: a Delphi consensus study. Lancet, 366, 2112–7.CrossRefGoogle ScholarPubMed
Fleming, J. and Brayne, C. 2008. Inability to get up after falling, subsequent time on floor, and summoning help: prospective cohort study in people over 90. British Medical Journal, 337, a2227.CrossRefGoogle ScholarPubMed
Folstein, M. F., Folstein, S. E. and McHugh, P. R. 1975. Mini-mental state. A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 3, 189–98.CrossRefGoogle Scholar
Hellström, I., Nolan, M. and Lundh, U. 2005. ‘We do things together’: a case study of ‘couplehood’ in dementia. Dementia, 4, 7, 7–22.CrossRefGoogle Scholar
Hellström, I., Nolan, M. and Lundh, U. 2007. Sustaining ‘couplehood’: spouses strategies for living postively with dementia. Dementia, 6, 3, 383–409.CrossRefGoogle Scholar
Horton, K. and Arber, S. 2004. Gender and the negotiation between older people and their carers in the prevention of falls. Ageing & Society, 24, 75–94.CrossRefGoogle Scholar
Jensen, J., Nyberg, L., Gustafson, Y. and Lundin-Olsson, L. 2003. Fall and injury prevention in residential care – effects in residents with higher and lower levels of cognition. Journal of the American Geriatric Society, 51, 627–35.CrossRefGoogle ScholarPubMed
Kallin, K., Gustafson, Y., Sandman, P.-O. and Karlsson, S. 2005. Factors associated with falls among older cognitively impaired people in geriatric care settings: a population based study. American Journal of Geriatric Psychiatry, 13, 501–9.CrossRefGoogle ScholarPubMed
Karner, T. X. and Bobbitt-Zeher, D. 2005. Losing selves: dementia care as disruption and transformation. Symbolic Interaction, 28, 4, 549–70.CrossRefGoogle Scholar
Keady, J. and Nolan, M. 2003. The dynamics of dementia: working together, working separately, or working alone? In Nolan, M., Lundh, U., Grant, G. and Keady, J. (eds), Partnerships in Family Care: Understanding the Caregiving Career. Open University Press, Maidenhead, UK, 15–32.Google Scholar
Kingston, P. 2000. Falls in later life: status passage and preferred identities as a new orientation. Health, 4, 2, 216–33.CrossRefGoogle Scholar
Kitwood, T. 1997. Dementia Reconsidered. Open University Press, Buckingham, UK.Google Scholar
Kreuger, R. A. and Casey, M. A. 2004. Focus Groups: A Practical Guide for Applied Research. Third edition, Sage Publications, Thousand Oaks, California.Google Scholar
Kuzuya, M., Masuda, Y., Hiarkawa, Y., Iwata, M., Enoki, H., Hasegawa, J., Izawa, S. and Iguchi, A. 2006. Falls of the elderly are associated with burden of caregivers in the community. International Journal of Geriatric Psychiatry, 21, 740–5.CrossRefGoogle ScholarPubMed
Logan, P. A., Coupland, C. A. C., Gladman, J. R. F., Sahota, O., Stoner-Hobbs, V., Robertson, K., Tomlinson, V., Ward, M., Sach, T. and Avery, A. J. 2010. Community falls prevention for people who call an emergency ambulance after a fall: randomised controlled trial. British Medical Journal, 340, c2102.CrossRefGoogle ScholarPubMed
Lord, S., Sherrington, C., Menz, H. and Close, J. 2007. Falls in Older People. Second edition, Cambridge University Press, Cambridge.CrossRefGoogle Scholar
Mackintosh, S., Fryer, C. and Sutherland, M. 2007. For falls sake: older carers’ perceptions of falls and falls risk factors. The Internet Journal of Allied Health Sciences and Practice, 5, July, 3.Google Scholar
Martin, F. C. 2009. Next steps for falls and fracture reduction. Age and Ageing, 38, 640–3.CrossRefGoogle ScholarPubMed
Morrow, S. L. 2007. Qualitative research in counselling psychology: conceptual foundations. The Counselling Psychologist, 35, 209–35.CrossRefGoogle Scholar
Nolan, M., Ryan, T., Enderby, P. and Reid, D. 2002. Towards a more inclusive vision of dementia care practice and research. Dementia, 1, 2, 193–211.CrossRefGoogle Scholar
O'Shaughnessy, M., Lee, K. and Lintern, T. 2010. Changes in the couple relationship in dementia care. Dementia, 9, 1, 237–58.CrossRefGoogle Scholar
Osborne, M. and Smith, J. A. 2008. The fearfulness of chronic pain and the centrality of the therapeutic relationship in containing it: an interpretative phenomenological analysis. Qualitative Research in Psychology, 5, 276–88.CrossRefGoogle Scholar
Oude Voshaar, R., Banerjee, S., Horan, M., Baldwin, R., Pendelton, N., Proctor, R., Tarrier, N., Woodward, Y. and Burns, A. 2006. Fear of falling more important than pain and depression for functional recovery after surgery for hip fracture in older people. Psychological Medicine, 36, 1635–45.CrossRefGoogle ScholarPubMed
Perry, J. and O'Connor, D. 2002. Preserving personhood: (re)membering the spouse with dementia. Family Relations, 51, 1, 55–62.CrossRefGoogle Scholar
Quinn, C., Clare, L., Pearce, A. and van Dijkhuizen, M. 2008. The experience of providing care in the early stages of dementia: an interpretative phenomenological analysis. Aging and Mental Health, 12, 6, 769–78.CrossRefGoogle ScholarPubMed
Reid, K., Flowers, P. and Larkin, M. 2005. Exploring lived experience. The Psychologist, 18, 1, 20–3.Google Scholar
Robinson, L., Clare, L. and Evans, K. 2005. Making sense of dementia and adjusting to loss: psychological reactions to a diagnosis of dementia in couples. Aging and Mental Health, 9, 4, 337–47.CrossRefGoogle ScholarPubMed
Roe, B., Howell, F., Riniotis, K., Beech, R., Crome, P. and Ong, B. N. 2009. Older people and falls: health status, quality of life, lifestyle, care networks, prevention and views on service use following a recent fall. Journal of Clinical Nursing, 18, 2261–72.CrossRefGoogle ScholarPubMed
Ross, A., Lloyd, J., Weinhardt, M. and Cheshire, H. 2008. Living and Caring? An Investigation of the Experiences of Older Carers. International Longevity Centre-UK, London.Google Scholar
Ross, F., Donovan, S., Brearley, S., Victor, C., Cottee, M., Crowther, P. and Clark, E. 2005. Involving older people in research. Health and Social Care in the Community, 13, 3, 268–75.CrossRefGoogle ScholarPubMed
Rubenstein, L. Z. 2006. Falls in older people: epidemiology, risk factors and strategies for prevention. Age and Ageing, 35, S2, ii37–41.CrossRefGoogle ScholarPubMed
Saltz, C. C., Zimmerman, S., Tompkins, C., Harrington, D. and Magaziner, J. 1999. Stress among caregivers of hip fracture patients. Journal of Gerontological Social Work, 30, 3, 167–81.CrossRefGoogle Scholar
Shaw, F. E. 2007. Prevention of falls in older people with dementia. Journal of Neural Transmission, 114, 1259–64.CrossRefGoogle ScholarPubMed
Shaw, F. E., Bond, J., Richardson, D. A., Dawson, P., Steen, I. N., McKeith, I. G. and Kenny, R. A. 2003. Multifactorial intervention after a fall in older people with cognitive impairment and dementia presenting to the accident and emergency department; randomised controlled trial. British Medical Journal, 326, 73–9.CrossRefGoogle Scholar
Skaff, M. M. and Pearlin, L. I. 1992. Caregiving: role engulfment and the loss of self. The Gerontologist, 32, 5, 656–64.CrossRefGoogle ScholarPubMed
Smith, J. A., Flowers, P. and Larkin, M. 2009. Interpretative Phenomenological Analysis: Theory, Method and Research. Sage Publications, London.Google Scholar
Tomkins, L. and Eatough, V. 2010. Reflecting on the use of IPA with focus groups; pitfalls and potentials. Qualitative Research in Psychology, 7, 3, 244–62.CrossRefGoogle Scholar
Vikström, S., Josephsson, S., Stigsdotter-Neely, A. and Nygård, L. 2008. Engagement in activities: experiences of persons with dementia and their caregiving spouses. Dementia, 7, 2, 251–70.CrossRefGoogle Scholar
Wilding, C. and Whiteford, G. 2005. Phenomenological research: an exploration of conceptual, theoretical and practical issues. Occupation, Participation and Health, 25, 3, 98–104.CrossRefGoogle Scholar
Wilkinson, S. 2004. Focus groups. In Breakwell, G. M. (ed.), Doing Social Psychology Research. British Psychological Society and Blackwell Publishing, Oxford, 344–76.CrossRefGoogle Scholar