Hostname: page-component-586b7cd67f-gb8f7 Total loading time: 0 Render date: 2024-11-26T03:18:57.628Z Has data issue: false hasContentIssue false
  • English
  • Français

Supporting User Participation in Local Policy Development: The Fife Dementia Strategy

Published online by Cambridge University Press:  05 January 2012

Louise McCabe  and
Brittany Ellis Bradley
Louise McCabe
Affiliation:
Dementia Services Development Centre, University of Stirling E-mail: [email protected]
Brittany Ellis Bradley
Affiliation:
Warwick Medical School, University of Warwick E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

This article reviews the consultation process during the development of a local dementia strategy. The processes of involvement by the range of stakeholders involved and how their different views shaped the strategy are considered. Particular attention is paid to the involvement of people with dementia as they are the recipients of the services to be shaped by the strategy and also form the group most difficult to reach. This article demonstrates the value of including a wide range of stakeholders in the development of local policy and the importance of involving people with dementia in policy development.

Keywords

Citizenshipolder peopleuser involvementcare services
Type
Articles
Information
Social Policy and Society , Volume 11 , Issue 2 , April 2012 , pp. 157 - 169
Copyright
Copyright © Cambridge University Press 2012

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

Agnew, A. and Duffy, J. (2010) ‘Innovative approaches to involving service users in palliative care’, Social Work Education, 29, 7, 744–59.CrossRefGoogle Scholar
Alzheimer's Society (2009) Out of the Shadows, London: Alzheimer's Society, http://www.alzheimers.org.uk/site/scripts/download_info.php?downloadID=133&fileID=454.Google Scholar
Baldwin, C. (2008) ‘Narrative, citizenship and dementia: the personal and the political’, Journal of Aging Studies, 22, 222–8.CrossRefGoogle Scholar
Bartlett, R. and O'Connor, D. (2007) ‘From personhood to citizenship: broadening the lens for dementia practice and research’, Journal of Aging Studies, 21, 107–18.CrossRefGoogle Scholar
Beard, R. and Fox, P. (2008) ‘Resisting social disenfranchisement: negotiating collective identities and everyday life with memory loss’, Social Science and Medicine, 656, 1509–20.CrossRefGoogle Scholar
Beresford, P. (2010) ‘Public partnerships, governance and user involvement: a service user perspective’, International Journal of Consumer Studies, 34, 5, 495–502.CrossRefGoogle Scholar
Bryman, A. (2008) Social Research Methods, 3rd edn, Oxford: Oxford University Press.Google Scholar
Carey, M. (2009) ‘Happy shopper? The problem with service user and carer participation’, British Journal of Social Work, 39, 1, 179–88.CrossRefGoogle Scholar
Clare, L. (2002) ‘We'll fight it as long as we can: coping with the onset of Alzheimer's disease’, Aging and Mental Health, 6, 2, 139–48.CrossRefGoogle Scholar
Clare, L., Roth, I. and Pratt, R. (2005) ‘Perceptions of change over time in early-stage Alzheimer's disease’, Dementia, 4, 4, 487–520.CrossRefGoogle Scholar
Clare, L., Rowlands, J., Bruce, E., Surr, C. and Downs, M. (2008a) ‘I don't do like I used to do’: a grounded theory approach to conceptualizing awareness in people with moderate to severe dementia living in long term care’, Social Science and Medicine, 66, 11, 2366–77.CrossRefGoogle Scholar
Clare, L., Rowlands, J., Bruce, E., Surr, C. and Downs, M. (2008b) ‘The experience of living with dementia in residential care: an interpretive phenomenological analysis’, The Gerontologist, 48, 6, 711–20.CrossRefGoogle Scholar
Craig, G. (2004) ‘Citizenship, exclusion and older people’, Journal of Social Policy, 33, 1, 95–114.CrossRefGoogle Scholar
DeBaggio, T. (2002) Losing My Mind: An Intimate Look at Life with Alzheimer's, New York: The Free Press.Google Scholar
Department of Health (2006) Our Health, Our Care, Our Say, London: Department of Health, http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4127453.Google Scholar
Department of Health (2009a) Living Well with Dementia, London: Department of Health, http://www.dh.gov.uk/en/socialcare/deliveringadultsocialcare/olderpeople/nationaldementiastrategy/index.htm.Google Scholar
Department of Health (2009b) Consultation Response and Analysis National Dementia Strategy, London: Department of Health, http://www.dh.gov.uk/en/Consultations/Responsestoconsultations/DH_094059.Google Scholar
Department of Health (2010) A Vision for Adult Social Care: Capable Communities and Active Citizens, London: Department of Health, http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_121508.Google Scholar
Department of Health (2008) Transforming the Quality of Dementia Care, Consultation on a National Dementia Strategy, London: Department of Health, http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_085567.pdf.Google Scholar
Gould, N. and Kendall, T. (2007) ‘Developing the NICE/SCIE guidelines for dementia care: the challenges of enhancing the evidence base for social and health care’, British Journal of Social Work, 37, 475–90.CrossRefGoogle Scholar
Graneheim, U. and Jansson, L. (2006) ‘The meaning of living with dementia and disturbing behaviour as narrated by three persons admitted to a residential home’, Journal of Clinical Nursing, 15, 1397–403.CrossRefGoogle ScholarPubMed
Keady, J. and Gilliard, J. (2002) ‘Testing times: the experience of neuropsychological assessment for people with suspected Alzheimer's’, in Harris, P. Braudy (ed.), The Person with Alzheimer's Disease: Pathways to Understanding the Experience, Baltimore: John Hopkins University Press.Google Scholar
Keady, J., Williams, S. and Hughes-Roberts, J. (2009) ‘Analysing decision making: bridging and balancing’, in O'Connor, D. and Purves, B. (eds.), Decision-Making, Personhood and Dementia, London: Jessica Kingsley Publishers.Google Scholar
Langdon, S., Eagle, A. and Warner, J. (2007), ‘Making sense of dementia in the social world: a qualitative study’, Social Science and Medicine, 64, 989–1000.CrossRefGoogle ScholarPubMed
Lansley, P. (2007) ‘Assistive Technology and Older People: A broad Perspective’, Irish Ageing Studies Review, seminar proceedings on independent living, available at http://www.gerontology.ie/documents/IGS_Journal_Vol1_07.pdfGoogle Scholar
Macquarrie, C. (2005) ‘Experiences in early stage Alzheimer's disease: understanding the paradox of acceptance and denial’, Aging and Mental Health, 9, 5, 430–41.CrossRefGoogle ScholarPubMed
Marshall, T. H. (1949/92) ‘Citizenship and social class’, in Marshall, T. H. and Bottomore, T. (eds.), Citizenship and Social Class, London: Pluto Press, pp. 3–51.Google Scholar
Mobley, T. (2007) Young Home: The Broken Road, Denver: Outskirts Press.Google Scholar
National Institute of Clinical Excellence (NICE) and Social Care Institute for Excellence (SCIE) (2006) Dementia: Supporting People with Dementia and Their Carers in Health and Social Care, NICE Clinical Guideline 42, London: NICE/SCIE, http://www.scie.org.uk/publications/misc/dementia/dementia-guideline.pdf.Google Scholar
Norwegian Ministry of Health and Care Services (2008) Dementia Plan 2015, Oslo: Norwegian Ministry of Health and Care Services.Google Scholar
Patmore, C., Qureshi, H. and Nicholas, E. (1999) ‘Tuning into feedback’, Community Care, 24–30, June, 28–9.Google Scholar
Qureshi, H., Patmore, C., Nicholas, E. and Bamford, C. (1998) ‘Overview: outcomes of social care for older people and carers’, Outcomes in Community Care Practice, No. 5, York: Social Policy Research Unit, University of York.Google Scholar
Reid, D., Ryan, T. and Enderby, P. (2001) ‘What does it mean to listen to people with dementia’, Disability and Society, 16, 3, 377–92.CrossRefGoogle Scholar
Reynish, E. (2009) ‘Prevalence of dementia in Europe, results from the EuroCoDe project’, Presentation at the Alzheimer Europe conference, Brussels.Google Scholar
Scottish Government (2010) Scotland's National Dementia Strategy, Edinburgh: Scottish Government, http://www.scotland.gov.uk/Publications/2010/09/10151751/17.Google Scholar
Scottish Government (2009) Changing Lives: Personalisation – A Shared Understanding. Commissioning for Personalisation: A Personalised Commissioning Approach to Support and Care Services. Edinburgh: Scottish Government, http://www.scotland.gov.uk/Publications/2009/04/07112629/0.Google Scholar
Secretary of State for Health (2009) Shaping the future of care together (Cm7673), London: The Stationery Office.Google Scholar
SIGN (2006) Management of Patients with Dementia, Guide 86, Edinburgh: Scottish Intercollegiate Guidelines Network, http://www.sign.ac.uk/pdf/sign86.pdf.Google Scholar
Steeman, E., Godderis, J., Grypdonck, M. et al. (2007) ‘Living with dementia from the perspective of older people: is it a positive story?’, Aging and Mental Health, 11, 2, 119–30.CrossRefGoogle ScholarPubMed
Surr, C. (2006) ‘Preservation of self in people with dementia living in residential care: a socio-biographical approach’, Social Science and Medicine, 62, 1720–30.CrossRefGoogle Scholar
Thornton, P. (2000) Older People Speaking Out: Developing Opportunities for Influence, York: Joseph Rowntree Foundation.Google Scholar
Ward, R., Vass, A., Aggarwal, N. et al. (2008) ‘A different story: exploring patterns of communication in residential dementia care’, Ageing and Society, 28, 629–51.CrossRefGoogle Scholar