To undertake a systematic inquiry into the experience of living with dementia in the community.
Design
Action research, underpinned by critical hermeneutics, brought together action and reflection, theory and practice to generate knowledge. Data were gathered by interviews and observations in participants’ homes, and focus group discussions in community settings.
Participants
Eleven people with mild to moderate dementia and their primary caregiver aged 59–84, living in Auckland, New Zealand.
Results
The findings reveal a conflict between living positively with dementia, and enduring the negative attitudes that typify the dominant social discourse. The central argument arising from the findings is the significance of personal attitudes.
Conclusions
Implications for policy makers, health care providers, and caregivers highlight the need to change the ways in which dementia is perceived. The pursuit of positive attitudes will do much to change social perceptions and enable people with dementia to live with a sense of well-being.
American Psychiatric Association (2000) Diagnostic and statistical manual of mental disorders: DSM IV, Washington DC: Author.
2.
BallonB. C.SkinnerW. (2008) Attitude is a little thing that makes a big difference: Reflection techniques for addiction psychiatry training. Academic Psychiatry. 32(3): 218–224.
3.
Banerjee, S. (2005). Living positively with dementia. Looking beyond the disease. Presented at the Alzheimer’s New Zealand Conference, Wellington, NZ.
4.
BrydenC. (2005) Dancing with dementia, London, UK: Jessica Kingsley.
DeBaggioT. (2002) Losing my mind: An intimate look at life with Alzheimer’s, New York, NY: The Free Press.
7.
FarleyJ. E. (2000) Majority-minority relations, 4th edn. Upper Saddle River, NJ: Prentice Hall.
8.
FranklV. E. (1964) Man’s search for meaning: An introduction to logotherapy, London, UK: Hodder & Stoughton.
9.
Friedell, M. (2003). Remarks to Ventura. Paper Presented at the 2003 Annual Education Conference of the California Central Coast Alzheimer's Association. Retrieved from http://members.aol.com/MorrisFF/Ventura.htm.
10.
Gadamer, H.G. (1976). Philosophical hermeneutics (D. E. Linge Ed. & Trans.) London, UK: University of California.
11.
Graff, M. J. L., Adang, E. M. M.,Vernooij-Dassen, M. J. M., Dekker, J., Jönsson, L., Thijssen, M., Hoefnagels, W. H. L., & Olde Rikkert, M. G. M. (2008). Community occupational therapy for older people with dementia and their caregivers: Cost effectiveness study. British Medical Journal, Retrieved on 23 January, 2009 from http://www.bmj.com/content/336/7636.toc#Research.
12.
Graff, M. J. L., Vernooij-Dassen, M. J. M., Thijssen, M., Dekker, J., Hoefnagels, W. H. L., & Olde Rikkert, M. G. M. (2006). Community occupational therapy for older people with dementia and their caregivers: Randomised controlled trial. British Medical Journal, Retrieved on 11 December, 2007 from http://www.bmj.com/content/333/7580.toc#Research.
13.
Habermas, J. (1984). The theory of communicative action (Vol. 1): Reason and the rationalization of society (T. McCarthy, Trans.). Boston, MA: Beacon.
14.
HampsonC. (2009) Wellbeing groups in dementia care services: A review of attendee and carer satisfaction. British Journal of Occupational Therapy. 72(6): 275–278.
15.
Health Scotland (2008) Coping with dementia: A practical handbook for carers, Glasgow, UK: Health Scotland.
16.
HughesJ. C.LouwS. J.SabatS. R.(2006) Seeing whole. In: HughesJ. C.LouwS. J.SabatS. R. (eds) Dementia: Mind, meaning, and the person, Oxford, UK: Oxford University, pp. 1–40.
17.
KemmisS. (2010) Research for praxis: Knowing doing. Pedagogy, Culture & Society. 18(1): 9–27.
18.
KincheloeJ. L.McLarenP.(2000) Rethinking critical theory and qualitative research. In: DenzinN. K.LincolnY. S. (eds) Handbook of qualitative research, 2nd edn. Thousand Oaks, CA: Sage, pp. 279–313.
19.
KitwoodT. (1997) Dementia reconsidered: The person comes first, Maidenhead, UK: McGraw-Hill.
20.
KitwoodT.BredinK. (1992) Towards a theory of dementia care: Personhood and well-being. Ageing and Society. 12: 269–287.
21.
Kögler, H. H. (1999). The power of dialogue: Critical hermeneutics after Gadamer and Foucault (P. Hendrickson, Trans.). Cambridge, MA: The MIT Press.
22.
MacRaeH. (2008) Making the best you can of it: Living with early-stage Alzheimer’s disease. Sociology of Health & Illness. 30(3): 396–412.
23.
McNiffJ.WhiteheadJ. (2006) All you need to know about action research, London, UK: Sage.
24.
MulhollandT. (2005) The power of healthy thinking: To change your attitude and your life, Auckland, New Zealand: Reed.
25.
OryM. G.YeeJ. L.TennstedtS. L.SchultzR.(2000) The extent and impact of family care: Unique challenges experienced by family caregivers. In: SchultzR. (ed.) Handbook on dementia caregiving: Evidence based interventions in family caregiving, New York, NY: Springer, pp. 1–33.
PhinneyA.(2008) Toward understanding the subjective experience of dementia. In: DownsM.BowersB. (eds) Excellence in dementia care: Research into practice, Berkshire, UK: Open University, pp. 35–51.
28.
PostS. G. (2000) Ethical issues from diagnosis to dying: The moral challenge of Alzheimer’s disease, Baltimore, MD: John Hopkins University.
29.
ReasonP. (1998) Political, epistemological, ecological and spiritual dimensions of participation. Studies in Cultures, Organisations and Societies. 4: 147–167.
30.
ReasonP.BradburyH.(2006) Inquiry and participation in search of a world worthy of human aspiration. In: ReasonP.BradburyH. (eds) Handbook of action research, 2nd edn. Thousand Oaks, CA: Sage, pp. 1–14.
31.
SabatS. (2001) The experience of Alzheimer’s disease: Life through a tangled veil, Oxford, UK: Blackwell.
32.
SabatS. (2003) Some potential benefits of creating research partnerships with people with Alzheimer’s disease. Research and Policy Planning. 21(2): 5–12.
33.
SabatS.(2008) A bio-psycho-social approach to dementia. In: DownsM.BowersB. (eds) Excellence in dementia care: Research into practice, Berkshire, UK: Open University, pp. 70–84.
34.
SabatS. R. (2011) A bio-psycho-social model enhances young adults’ understanding of and beliefs about people with Alzheimer’s disease: A case study. Dementia. 11(1): 95–112.
35.
Sabat, S. R., & Gladstone, C. M. (2010). What intact social cognition and social behavior reveal about cognition in the moderate stage of Alzheimer’s disease. Dementia. DOI: 10.1177/1471301210364450.
36.
ShenkD. (2001) The forgetting Alzheimer’s: Portrait of an epidemic, New York, NY: Anchor.
37.
Symonds, R. L. (1981). Dementia as an experience. Nursing Times, 1708–1710.
38.
TaylorR. (2007) Alzheimer’s from the inside out, Baltimore, MD: Health Professionals.
39.
WhitehouseP. J.GeorgeD. (2008) The myth of Alzheimer’s: What you aren’t being told about today’s most dreaded disease, New York, NY: St Martin’s Griffin.
40.
WilkinsonH.(2002) Including people with dementia in research. In: WilkinsonH. (ed.) The perspectives of people with dementia, London, UK: Jessica Kinsley, pp. 9–24.
41.
WinterR.Munn-GiddingsC. (2001) A handbook for action research in health and social care, London, UK: Routledge.
42.
ZaritS. H.ZaritJ. M.(2008) Flexibility and change: The fundamentals for families coping with dementia. In: DownsM.BowersB. (eds) Excellence in dementia care: Research into practice, Berkshire, UK: Open University, pp. 85–102.
43.
Zeisal, J. (2005, May). Respect and personhood are not optional. Paper Presented at the Alzheimer Australia National Conference, Sydney, New South Wales.
44.
ZygolaJ. M. (1999) Care that works, Baltimore, MD: John Hopkins University.
