Hostname: page-component-586b7cd67f-tf8b9 Total loading time: 0 Render date: 2024-11-23T22:11:32.387Z Has data issue: false hasContentIssue false
  • English
  • Français

Why do ethnic elders present later to UK dementia services? A qualitative study

Published online by Cambridge University Press:  24 February 2011

Naaheed Mukadam ,
Claudia Cooper ,
Behzad Basit  and
Gill Livingston
Naaheed Mukadam*
Affiliation:
University College London, Department of Mental Health Sciences, London, UK
Claudia Cooper
Affiliation:
University College London, Department of Mental Health Sciences, London, UK
Behzad Basit
Affiliation:
Barnet Hospital, Barnet, Hertfordshire, UK
Gill Livingston
Affiliation:
University College London, Department of Mental Health Sciences, London, UK
*
Correspondence should be addressed to: Dr Naaheed Mukadam, Department of Mental Health Sciences, UCL, Archway Campus, Holborn Union Building, Highgate Hill, London N19 5LW, UK. Phone: +44 (0)207 561 4218; Fax: +44 (0)207 288 3411. Email: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Background: Western policy initiatives prioritize early diagnosis of dementia, but minority ethnic (ME) people currently present later to dementia specialist care than their indigenous counterparts. In order to allow the development of rational interventions, we completed this first study to explore the link between attitudes to help-seeking for dementia and the help-seeking pathway in the ME and indigenous population.

Methods: We purposively recruited a maximum variation sample comprising 18 family carers of people with dementia from the major UK ethnic groups. We used semi-structured interviews to determine the barriers to and facilitators of help-seeking, and the pathways to diagnosis. Two researchers independently coded interviews and recruitment continued until theoretical saturation was reached.

Results: ME carers, in contrast to the indigenous population, tended to delay help-seeking until they could no longer cope or until others commented on the problems. They often thought that families should look after their own elders and a diagnosis alone was purposeless. This appeared to relate to beliefs about the etiology of cognitive impairment, negative beliefs about psychiatry and their sense of familial responsibility.

Conclusions: ME carer beliefs were an important barrier to early diagnosis. Further work should explore whether an intervention can modify these attitudes, so that families understand that a diagnosis may allow planning and avoidance of crises; rather than signifying a failure in duty, disloyalty, or relinquishing of the caring role. Further research should focus on developing interventions to tackle barriers to help-seeking in ethnic minorities so that healthcare access can be equitable for all.

Keywords

ethnicitycare pathwaydementiaaccess to servicesbarriers
Type
Research Article
Information
International Psychogeriatrics , Volume 23 , Issue 7 , September 2011 , pp. 1070 - 1077
Copyright
Copyright © International Psychogeriatric Association 2011

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

Adelman, S., Blanchard, M. and Livingston, G. (2009). A systematic review of the prevalence and covariates of dementia or relative cognitive impairment in the older African-Caribbean population in Britain. International Journal of Geriatric Psychiatry, 24, 657–665.CrossRefGoogle ScholarPubMed
Cooper, C., Tandy, R., Balamurali, T. B. S. and Livingston, G. (2010). A systematic review and meta-analysis of ethnic differences in use of dementia treatment, care, and research. American Journal of Geriatric Psychiatry, 18, 193–203.Google Scholar
Department of Health (2009). Living Well with Dementia: A National Dementia Strategy. London: Stationery Office.Google Scholar
Ferri, C. P. et al. (2005). Global prevalence of dementia: a Delphi consensus study, Lancet, 366, 2112–2117.Google Scholar
Hinton, L., Franz, C. and Friend, J. (2004). Pathways to dementia diagnosis: evidence for cross-ethnic differences. Alzheimer Disease and Associated Disorders, 18, 134–144.Google Scholar
Knapp, M. and Prince, M. (2007). Dementia UK: The Full Report. London: Alzheimer's Society.Google Scholar
Lawrence, V., Murray, J., Samsi, K. and Banerjee, S. (2008). Attitudes and support needs of Black Caribbean, south Asian and White British carers of people with dementia in the UK. British Journal of Psychiatry, 193, 240–246.Google Scholar
Livingston, G., Leavey, G., Kitchen, G., Manela, M., Sembhi, S. and Katona, C. (2002). Accessibility of health and social services to immigrant elders: the Islington Study. British Journal of Psychiatry, 180, 369–374.CrossRefGoogle ScholarPubMed
Luengo-Fernandez, R., Leal, J. and Gray, A. (2010). Dementia 2010: The Prevalence, Economic Cost and Research Funding Compared with other Major Diseases: A Report Prepared by the Health Economics Research Centre. Oxford: University of Oxford for the Alzheimer's Research Trust.Google Scholar
Mukadam, N., Cooper, C. and Livingston, G. (2009). A systematic review of ethnicity and pathways to care in dementia, International Journal of Geriatric Psychiatry, 26, 12–20.CrossRefGoogle Scholar
National Audit Office (2007). Improving Services and Support for People with Dementia, London: National Audit Office.Google Scholar
Office for National Statistics (2007). Population Estimates by Ethnic Group. Newport: Office for National Statistics.Google Scholar
Strauss, A. L. and Corbin, J. M. (1990). Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. Sage: London.Google Scholar
Weimer, D. L. and Sager, M. A. (2009). Early identification and treatment of Alzheimer's disease: social and fiscal outcomes. Alzheimers Dementia, 5, 215–226.Google Scholar
World Health Organization (2003). World Health Report 2003: Shaping the Future. Geneva: World Health Organization.Google Scholar