Freedom of choice and decision-making in health and social care:Views of older patients with early-stage dementia and their carers

Dementia

Volumn 5, Issue 4, 2006, Pages 479-502

  Tyrrell, Jeanne ^a   Genin, Nathalie ^a   Myslinski, Michele ^a  

^a UNIV GRENOBLE ALPES   (France)

Author keywords

communication; decision making; dementia; evaluation; patients' and carers' views

Indexed keywords

EID: 84993736197     PISSN: 14713012     EISSN: None     Source Type: Journal    
DOI: 10.1177/1471301206069915     Document Type: Article

References (39)

1. Baldwin, C., Hughes J., Hope,T., Jacoby, R., & Ziebland, S. (2002). Ethics and dementia: Mapping the literature by bibliometric analysis. International Journal of Geriatric Psychiatry, 18, 41–54.
2. Brod, M., Stewart, A., Sands, L., & Walton, P. (1999). Conceptualisation and measurement of quality of life in dementia: Thedementia quality of life instrument. The Gerontologist, 39(1), 25–35.
3. Brodaty, H., Gresham, M., & Luscombe, G. (1997). The Prince Henry Hospital Dementia Caregivers'Training Programme. International Journal of Geriatric Psychiatry, 12, 183–192.
4. Browne, A., Blake, M., Donnelly, M., & Herbert, D. (2002). On liberty for the old. Canadian Journal of Ageing, 21(2), 283–293.
5. Clarke, C. (1999). Professional practice with people with dementiaand their family carers: Help or hindrance. In T. Adams, & C. Clarke (Eds.), Dementia care: Developing partnerships in practice (pp.280–304. London, Baillière Tindall.
6. Coudin, G. (2004). La réticence des aidants familiaux à recourir auxservices gérontologiques: une approche psychosociale. Psychologie et Neuropsychologie du Vieillissement, 2(4), 285–296.
7. Davies, S., & Nolan, M. (2003). ‘Making the best of things': Relatives’experiences of decisions about care-home entry. Ageing and Society, 23, 429–450.
8. Done, D.J., & Thomas, J.A. (2001). Training in communication skills for informal carers of people sufferingfrom dementia: A cluster randomized clinical trial comparing a therapist-ledworkshop and a booklet. International Journal of Geriatric Psychiatry, 16, 816–821.
9. Feinberg, L.F., & Whitlach, C.J. (2001). Are persons with cognitive impairment able to state consistent choices? The Gerontologist, 41(3), 374–282.
10. Fior, S., & Lallemand, D. (2001). Vivre avec la maladied'Alzheimer. Paris: Fondation Médéric Alzheimer.
11. Fondation Nationale de Gérontologie (1989). Charte des droitset libertés des personnes âgéesdépendantes.Paris, FNG. (Document available in English from http://www.fng.fr)
12. Frossard, M. (1996). The economics of French case management. Journal of Case Management, 155(4), 162–167.
13. Frossard, M., Boitard, A., & Jasso-Masqueda, G. (2001).L'évaluation des coordonnationsgérontologiques. Grenoble: Fondation de France-CPDG.
14. Gaichies, S., & Charles, A. (2001). La méconnaissance de leurs symptômes par les sujetsporteurs de la maladie d'Alzheimer. Pratiques Psychologiques, 3, 37–56.
15. Gallard,T., & Willard, D. (2002). Diagnostique de la maladie d'Alzheimer. Annales Médico-Psychologiques, 160, 684–691.
16. Gallicchio, L., Siddiqi, N., Langenberg, P., & Baumgarten, M. (2002). Gender differences in burden and depression among informal caregivers ofdemented elders in the community. International Journal of Geriatric Psychiatry, 17(2), 154–163.
17. Goldsmith, M. (1996). Hearing the voice of people with dementia. London: Jessica Kingsley Publishers.
18. Hasselkus, B. (1988). Meaning in family caregiving: Perspectives on caregiver/professional relationships. The Gerontologist, 28, 686–691.
19. Hobson, J.P., Coyle, J.M., Leeds, L., & Meara, R.J. (2001). Health professionals' knowledge about Alzheimer's disease (letter). International Journal of Geriatric Psychiatry, 16, 822–823.
20. Hughes, J.C., Hope,T., Savulescu, J., & Ziebland, S. (2002). Carers, ethics and dementia: A survey and review of the literature. International Journal of Geriatric Psychiatry, 17, 35–40.
21. Israel, L. (1997). Evaluation Gériatrique parl'Entourage. Traduction française du GERRI. In J.D. Guelfi et al. (Eds.), L'évaluation cliniquestandardisée en psychiatrie,Volume II, (pp.513–518. Castres: Editions Médicales Pierre Fabre.
22. Karlawish, J. (2002). Les décisions de patients et de leursaidants concernant la recherche et le traitement de la maladied'Alzheimer. In S. Andrieu & J.-P. Aquino (Eds.) Les aidants familiaux et professionnels: du constat àl'action(pp. 157–162. Paris: Serdi.
23. Kitwood,T. (1997). Dementia reconsidered: The person comes first. Buckingham: Open University Press.
24. Leroy, S., Myslinski, M., & De Galbert, A. (2003). Représentations préalables del'entrée en institution pour la personneâgée et sa famille. Gérontologie, 125, 35–41.
25. Michon, A., Gargiulo, M., & Rozotte, C. (2003). Qu'est ce que la démence? La démence vue parle patient. Psychologie et Neuropsychologie du Vieillissement, 1(1), 7–13.
26. Mozley, C., Huxley, P., Sutcliffe, C., Bagley, H., Burns, A., Challis, D., et al. (1999). ‘Not knowing where I am doesn't mean I don'tknow what I like': Cognitive impairment and quality of liferesponses in elderly people. International Journal of Geriatric Psychiatry, 14, 776–783.
27. Novella, J.L., Jochum, C., Jolly, D., Morrone, I., Ankri, J., Bureau, F., et al. (2001). Agreement between patients' and proxies' reports ofquality of life in Alzheimer's disease. Quality of Life Research, 10(5), 443–452.
28. O'Connor, D., Pollitt, P., Roth, M., Brook, P., & Reiss, B. (1990). Problems reported by relatives in a community study of dementia. British Journal of Psychiatry, 156, 835–841.
29. Owens, D., & Batchelor, C. (1996). Patient satisfaction and the elderly. Social Sciences and Medicine, 42(11), 1483–1491.
30. Santo Pietro, M.J., & Ostuni, E. (1997). Successful communication with Alzheimer'sdisease patients: An in-service manual. Boston, MA: Butterworth-Heinemann.
31. Schwartz, G. (1983). Development and validation of the Geriatric Evaluation by Relatives RatingInstrument (GERRI). Psychological Reports, 53, 497–488.
32. Somme, D. (2003). Participation et choix des résidents dans le processusd'entrée en institution. Dossiers Solidarité et Santé, 1, 35–47.
33. Sugarman, J., Cain, C., Wallace, R., & Welsh-Bohmer, K. (2001). How proxies make decisions about research for patients withAlzheimer's disease. Journal of American Geriatrics Society, 49(8), 1110–1119.
34. Tadd,W., Bayer,T., & Dieppe, P. (2002). Dignity in health care: Reality or rhetoric. Reviews in Clinical Gerontology, 12, 1–4.
35. Thomas, P., Chantoin-Merlet, S., Hazif-Thomas, C., et al. (2002). Proximologie: premières études. Les aidants informelsprenant en charge des déments à domicile. Etude PIXEL. Gérontologie et Société,N° Spécial, 65–89.
36. Tyrrell, J. (2004). L'épuisement des aidants:facteurs de risque et réponses thérapeutiques. In J. Gaucher, G. Ribes, & T. Darnaud (Eds.), Alzheimer et l'aide aux aidants: Unenécessaire question éthique(pp.48–59. Lyon: Edition Chronique Sociale.
37. Wackerbarth, S. (2002). The Alzheimer's family caregiver as decision-maker: A typology ofdecision styles. Journal of Applied Gerontology, 21(3), 314–332.
38. Younès, N., Sarfati,Y., Passerieux, C., & Hardy-Baylé, M. (2002). L'information donnée aux patients n'est pasl'information retenue. L'Information Psychiatrique 10, 1029–1038.
39. Zarit, S., Todd, P., & Zarit, J. (1986). Subjective burden of husbands and wives as caregivers: A longitudinal study. The Gerontologist, 26(3), 260–266.