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Service-related needs of older people with dementia: perspectives of service users and their unpaid carers

  • Sylwia Górska (a1), Kirsty Forsyth (a1), Linda Irvine (a2), Donald Maciver (a1), Susan Prior (a1), Jacqueline Whitehead (a1), Janice Flockhart (a3), Jane Fairnie (a4) and Jenny Reid (a5)...

Abstract

Background: Dementia is a major cause of disability among older people and constitutes one of the greatest challenges currently facing families and health and social care services in the developed world. In response to trends in dementia prevalence and the impact the condition has on peoples’ lives, dementia care has been placed high on the public and political agenda in the United Kingdom. However, despite significant public resources being allocated to combat the impact of the disease, recent evidence indicates that numerous challenges in relation to service provision remain. This study aimed to develop a deeper understanding of the lived experience of people with dementia regarding their service-related needs.

Method: The study made use of data gathered through individual semi-structured, narrative interviews conducted with persons with experience of dementia and their unpaid carers.

Results: Although participants were generally satisfied with the services they received, a number of unmet needs related to service provision were identified. In terms of diagnostic procedures the findings of this study indicate the need for early diagnosis delivered through a comprehensive assessment package. The participants also highlighted the need for well-coordinated post-diagnostic support, greater continuity of care concerning the personnel involved, and enhanced access to non-pharmacological interventions to support identity and social engagement.

Conclusion: This study contributes to a better understanding of service-related needs of people with dementia in relation to diagnostic procedures and post-diagnostic support.

Copyright

Corresponding author

Correspondence should be addressed to: Sylwia Górska, MSc OT, School of Health Sciences, Queen Margaret University, Edinburgh EH21 6UU, Scotland, UK. Phone: +44 (0)131-474-0000; Fax: +44 (0)131-474-0001. Email: sgorska@qmu.ac.uk.

References

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Alzheimer Disease International. (2009). World Alzheimer Report. London: ADI.
Alzheimer Disease International. (2010). World Alzheimer Report. The Global Economic Impact of Dementia. London: ADI.
Alzheimer Disease International. (2011). World Alzheimer Report. The Benefits of Early Diagnosis and Intervention. London: ADI.
Alzheimer's Society. (2012). Dementia UK: A National Challenge. London: Alzheimer's Society.
Bourgeois, M. S. and Hickey, E. M. (2009). Dementia: From Diagnosis to Management. A Functional Approach. Florence, KY: Psychology Press.
Care Services Improvement Partnership (2005). Everybody's Business – Integrated Mental Health Services for Older Adults: A Service Development Guide. London: Department of Health.
Christofoletti, G., Mércia Oliani, M., Sebastiao, G. and Florindo, S. (2007). Effects of motor intervention in elderly patients with dementia: an analysis of randomized controlled trials. Topics in Geriatric Rehabilitation, 23, 149154. doi:10.1097/01.TGR.0000270183.90778.8e.
Congress of the USA. (2011). National Alzheimer's Project Act (NAPA). Washington, DC: Congress of the USA. Available at: http://www.gpo.gov/fdsys/pkg/BILLS-111s3036enr/pdf/BILLS-111s3036enr.pdf; last accessed 21 August 2012.
Creswell, J. W. and Miller, D. L. (2000). Determining validity in qualitative inquiry. Theory Into Practice, 39, 124130. doi:10.1207/s15430421tip3903_2.
Department of Health. (2009). Living Well with Dementia: A National Dementia Strategy. London: Department of Health.
Department of Health, Social Services and Public Safety. (2011). Improving Dementia Services in Northern Ireland. A Regional Strategy (online). Available at: http://www.dhsspsni.gov.uk/show_publications?txtid=53089; last accessed 4 October 2012.
Fox, N., Hunn, A. and Mathers, N. (1998). Trent Focus for Research and Development in Primary Health Care: Sampling. Leicestershire, UK: Trent Focus Group.
Glaser, B. G. and Strauss, A. L. (1967). The Discovery of Grounded Theory: Strategies for Qualitative Research. New York: Aldine.
Graff, M. J. L., Vernooij-Dassen, M. J. M., Thijssen, M., Dekker, J., Hoefnagels, W. H. L. and Olderikkert, M. G. M. (2007). Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: a randomised controlled trial. The Journals of Gerontology. Series A, Biological Sciences and Medical Sciences, 62, 10021009. doi:10.1093/gerona/62.9.1002.
McCarten, J. R., Anderson, P., Kuskowski, M. A., Jonk, Y. and Dysken, M. W. (2010). Changes in outpatient costs following screening and diagnosis of cognitive impairment. Alzheimer's & Dementia: The Journal of the Alzheimer's Association, 6, Supplement, 19e. doi:10.1016/j.jalz.2010.08.057.
McDonald, A. and Heath, B. (2008). Developing services for people with dementia. Findings from research in a rural area. Quality in Ageing and Older Adults, 9, 918. doi:10.1108/14717794200800023.
Morse, J. M. and Field, P. A. (1995). Qualitative Research Methods for Health Professionals. Thousand Oaks, CA: Sage.
National Audit Office. (2010). Improving Dementia Services in England: An Interim Report. London: The Stationery Office.
National Institute for Health and Clinical Excellence (NICE). (2011). Dementia. Supporting People with Dementia and Their Carers in Health and Social Care. NICE clinical guideline 42. London: NICE.
NHS Right Care. (2011). NHS Atlas of Variation in Healthcare. London: NHS Right Care.
Patton, M. Q. (2002). Qualitative Research & Evaluation Methods, 3rd edn.Thousand Oaks, CA: Sage.
Powell, J. A. (2000). Communication interventions in dementia. Reviews in Clinical Gerontology, 10, 161168. doi:10.1017/S0959259800000277.
Rimmer, E., Wojciechowska, M., Stave, C., Sganga, A. and O'Connell, B. (2005). Implications of the Facing Dementia Survey for the general population, patients and caregivers across Europe. International Journal of Clinical Practice, 59 (S146), 1724. PMID:15801187.
Scottish Government. (2010). Scotland's National Dementia Strategy. Edinburgh, UK: The Scottish Government.
Scottish Government. (2011). Standards of Care for Dementia in Scotland. Edinburgh, UK: The Scottish Government.
Smith, J. A., Flowers, P. and Larkin, M. (2009). Interpretative Phenomenological Analysis. London: Sage.
The Royal College of Psychiatrists. (2011). Report of the National Audit of Dementia Care in General Hospitals 2011. London: The Royal College of Psychiatrists.
van der Roest, H. G., Meiland, F. J. M., Maroccini, R., Comijs, H. C., Jonker, C. and Dröes, R. M. (2007). Subjective needs of people with dementia: a review of the literature. International Psychogeriatrics, 19, 559592. doi:10.1017/S1041610206004716.
Vasse, E.et al. (2012). Guidelines for psychosocial interventions in dementia care: a European survey and comparison. International Journal of Geriatric Psychiatry, 27, 4048. doi:10.1002/gps.2687.
Welsh Assembly Government. (2011). National Dementia Vision for Wales. Dementia Supportive Communities (online). Available at: http://wales.gov.uk/topics/health/publications/health/guidance/dementia/?lang=en; last accessed 4 October 2012.
Whittemore, R., Chase, S. K. and Mandle, C. L. (2001). Validity in qualitative research. Qualitative Health Research, 11, 522537. doi: 10.1177/104973201129119299.

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