Hostname: page-component-78c5997874-j824f Total loading time: 0 Render date: 2024-11-10T10:04:02.487Z Has data issue: false hasContentIssue false
  • English
  • Français

“Out of sight, out of mind”: a qualitative study of visual impairment and dementia from three perspectives

Published online by Cambridge University Press:  06 March 2009

Vanessa Lawrence ,
Joanna Murray ,
Dominic ffytche  and
Sube Banerjee
Vanessa Lawrence
Affiliation:
Section of Mental Health and Ageing, Institute of Psychiatry, King's College London, U.K.
Joanna Murray
Affiliation:
Section of Mental Health and Ageing, Institute of Psychiatry, King's College London, U.K.
Dominic ffytche
Affiliation:
Section of Old Age Psychiatry and Centre for Neuroimaging Sciences, Institute of Psychiatry, King's College London, U.K.
Sube Banerjee*
Affiliation:
Section of Mental Health and Ageing, Institute of Psychiatry, King's College London, U.K.
*
Correspondence should be addressed to: Sube Banerjee, Professor of Mental Health and Ageing, PO26 Section of Mental Health and Ageing, De Crespigney Park, Institute of Psychiatry, King's College London, SE5 8AF, U.K. Phone: + 44 207 8480012; Fax + 44 207 848 5056. Email: s.banerjee@iop.kcl.ac.uk.
Get access Rights & Permissions [Opens in a new window]

Abstract

Background: Dementia and visual impairment are among the most common medical conditions in later life. Almost nothing is known about the experiences and needs of older adults with both conditions.

Method: In this qualitative study using in-depth individual interviews, multiple perspectives were sought through a case-study approach. Fifty-two interviews were conducted: 17 with older adults with visual impairment and dementia, 17 with family caregivers, and 18 with care professionals.

Results: Impaired memory and a lack of visual cues created profound disorientation and distress, which could be manifested in disruptive behavior. Visual hallucinations compounded older adults' disorientation, and caregivers were uncertain about how to manage them. Visual impairments reduced the ability of older adults to perform certain activities safely, while dementia impaired their ability to assess the risks accurately. Concerns about safety prompted family members to limit their relatives' activities even in early stages of dementia. Low-vision services perceived themselves to be ill equipped to manage dementia-related needs, while visual needs were accorded a low priority by dementia services. A lack of joint working by the two services led to an overcautious approach.

Conclusions: The research identified considerable unmet needs and opportunities to improve care. The provision of clear verbal communication and optimized visual inputs is likely to reduce disorientation, distress and agitated behavior, while one-to-one contact is needed to overcome feelings of isolation. Family caregivers require additional respite services and advice on managing hallucinations. Increased sharing of information and skills between mental health and low-vision professionals would help maximize older adults' independence.

Keywords

visual impairmentdementiaqualitative research
Type
Research Article
Information
International Psychogeriatrics , Volume 21 , Issue 3 , June 2009 , pp. 511 - 518
Copyright
Copyright © International Psychogeriatric Association 2009

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

Aggarwal, N., VassA, A. A, A., MinardiH, A. H, A., Ward, R., Garfield, C. and Cybuk, B. (2003). People with dementia and their relatives: personal experiences of Alzheimer's and of the provision of care. Journal of Psychiatry and Mental Health Nursing, 10, 187–197.CrossRefGoogle ScholarPubMed
Barbour, R. S. (2001). Checklists for improving rigour in qualitative research: a case of the tail wagging the dog. BMJ, 322, 1115–1117.CrossRefGoogle ScholarPubMed
Berman, K. and Brodaty, H. (2006). Psychosocial effects of age-related macular degeneration. International Psychogeriatrics, 18, 415–428.CrossRefGoogle ScholarPubMed
Black, B. S. and Rabins, P. V. (2007). Qualitative research in psychogeriatrics. International Psychogeriatrics, 19, 167–173.CrossRefGoogle ScholarPubMed
Care Services Improvement Partnership (2007). Supplementary Guidance for Older People's Mental Health Services. Colchester: National Institute for Mental Health in England.Google Scholar
Chapman, F., Dickson, J., McKeith, I. and Ballard, C. (1999). Association among visual hallucinations, visual acuity, and specific eye pathologies in Alzheimer's disease: treatment implications. American Journal of Psychiatry, 156, 1983–1985.CrossRefGoogle ScholarPubMed
Charmaz, K. (1983). Loss of self: a fundamental form of suffering in the chronically ill. Sociology of Health and Illness, 5, 168–195.CrossRefGoogle Scholar
Cormack, F. K., Tovee, M. and Ballard, C. (2000). Contrast sensitivity and visual acuity in patients with Alzheimer's disease. International Journal of Geriatric Psychiatry, 15, 614–620.3.0.CO;2-0>CrossRefGoogle ScholarPubMed
Evans, J. et al. (2002). Prevalence of visual impairment in people aged 75 years and above in Britain: results from the MRC Trial of Assessment and Management of Older People in the Community. British Journal of Ophthalmology, 86, 795–800.CrossRefGoogle Scholar
Glaser, B. and Strauss, A. L. (1967). The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine.Google Scholar
Hoffman, A., Rocca, W. A. and Brayne, C. (1991). The prevalence of dementia in Europe: a collaborative study of 1980–91 findings. International Journal of Epidemiology, 20, 637–748.Google Scholar
Holmen, K., Ericsson, K. and Winblad, B. (2000). Social and emotional loneliness among non-demented elderly people. Archives of Gerontology and Geriatrics, 31, 177–192.CrossRefGoogle Scholar
Jorm, A. F. (1994). A short form of the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE): development and cross-validation. Psychological Medicine, 24, 145–153.CrossRefGoogle Scholar
Klaver, C., Ott, A., Hoffman, A., Assink, J., Breteler, M. and Dejong, P. (1999). Is age-related maculopathology associated with Alzheimer's disease? The Rotterdam Study. American Journal of Epidemiology, 150, 963–968.CrossRefGoogle ScholarPubMed
Koch, J. M., Datta, G., Makhdoom, S. and Grossberg, G. T. (2005). Unmet visual needs of Alzheimer' s disease patients in long-term care facilities. Journal of the American Medical Directors Association, 6, 233–237.CrossRefGoogle ScholarPubMed
Martin, J., Meltzer, H. and Elliot, D. (1988). The Prevalence of Disability among Adults. OPCS Surveys of Disability in Great Britain, Report 1. London: Office of Population Censuses and Surveys.Google Scholar
Mays, N. and Pope, C. (2000). Qualitative research in health care: assessing quality in qualitative research. BMJ, 320, 50–52.CrossRefGoogle Scholar
Menon, G. J. (2005). Complex visual hallucinations in the visually impaired. Archives of Ophthalmology, 123, 349–355.CrossRefGoogle ScholarPubMed
Morris, J. C. (1993). The Clinical Dementia Rating (CDR): current version and scoring rules. Neurology, 43, 2412–2414.CrossRefGoogle ScholarPubMed
NHS Eyecare Services Programme (2007). Recommended Standards for Low Vision Services. In collaboration with the Royal National Institute for the Blind. London: Department of Health.Google Scholar
Patton, M. Q. (1990). Qualitative Evaluation and Research Methods, Newbury Park: Sage.Google Scholar
Preston, L., Marshall, A. and Bucks, R. (2007). Investigating the ways that older people cope with dementia: a qualitative study. Aging and Mental Health, 11, 131–143.CrossRefGoogle ScholarPubMed
QSR International (2002). NVivo 2. Doncaster, Australia: QSR International.Google Scholar
Reischies, F. M. and Geiselmann, B. (1997). Age-related cognitive decline and vision impairment affecting the detection of dementia syndrome in old age. British Journal of Psychiatry, 171, 449–451.CrossRefGoogle ScholarPubMed
Spector, A. et al. (2003). Efficacy of an evidence-based cognitive stimulation therapy programme for people with dementia. British Journal of Psychiatry, 183, 248–254.CrossRefGoogle ScholarPubMed
Steerman, E., Dierckx de Casterle, B., Godderis, J. and Grypdonck, M. (2006). Living with early stage dementia: a review of qualitative studies. Journal of Advanced Nursing, 54, 722–738.CrossRefGoogle Scholar
Uhlmann, R. F., Laarson, E. B., Koepsell, T. D., Rees, E. B. and Duckert, L. G. (1991). Visual impairment and cognitive dysfunction in Alzheimer's disease. Journal of General Internal Medicine, 6, 126–132.CrossRefGoogle ScholarPubMed
Watson, G. R. (2001). Low vision in the geriatric population: rehabilitation and management. Journal of the American Geriatrics Society, 49, 317–330.CrossRefGoogle ScholarPubMed
Whitson, H. E., Cousins, S. W., BurchettB, M. B, M., Hybels, C. F., Pieper, C. F. and Cohen, H. J. (2007). The combined effect of visual impairment and cognitive impairment on disability in older people. Journal of the American Geriatrics Society, 55, 885–891.CrossRefGoogle ScholarPubMed
World Health Organization (1992). International Statistical Classification of Diseases and Health Related Problems, 10th revision. Geneva: World Health Organization.Google Scholar