There are strong opinions about the advantages and disadvantages of a disclosure of
dementia to the individual affected, but little is known about how they and their
families understand and respond to this information. This article reports and
examines the impact of receiving a diagnosis of dementia, by comparing descriptions
of its impact at two weeks, with descriptions explored at 12 weeks. Interviews were
undertaken on two occasions with 18 couples, one of whom had received a diagnosis of
dementia, the other being a family member. The interviews revealed a gradual process
of realization of what the diagnosis meant, resulting in important subtle changes in
understandings of dementia and personal relationships. Disclosure of dementia occurs
at one point in time, but its impact should be seen as a process. Suggestions are
made on how the process of diagnosis and its sharing may enhance family partnerships
and social relationships through support of both individuals with dementia and families.
Bamford, C.
,
Lamont, S.
,
Eccles, M.
,
Robinson, L.
,
May, C.
, &
Bond, J.
(2004).
Disclosing a diagnosis of dementia: A systematic review
.International Journal of Geriatric Psychiatry, 19,
151–169
.
2.
Bender, M.P.
, &
Cheston, R.
(1997).
Inhabitants of a lost kingdom
. Ageing and Society, 17,
513–532
.
3.
Britten, N.
(1995).
Qualitative interviews in medical research
. British Medical Journal, 311,
251–253
.
4.
Cantegreil-Kallen, I.
,
Turbelin, C.
,
Olaya, E.
,
Blanchon,T.
,
Moulin, F.
,
Rigaud, A.S.
, et al. (2005).
Disclosure of diagnosis of Alzheimer's disease in French general practice
. American Journal of Alzheimer's Disease and Related
Disorders,20,
220–227
.
5.
Carpenter, B.
, &
Dave, J.
(2004).
Disclosing a dementia diagnosis: A review of opinion and practice, and a
proposed research agenda
. The Gerontologist,44,
149–158
.
6.
Charlesworth, G.
(2001).
Reviewing psychosocial interventions for family carers of people with dementia
. Aging and Mental Health,5,
104–106
.
7.
Clare, L.
(2003).
Managing threats to self: Awareness in early-stage Alzheimer's disease
. Social Science & Medicine, 57,
1017–1029
.
8.
Clare, L.
,
Roth, I.
, &
Pratt, R.
(2005).
Perceptions of change over time in early-stage Alzheimer's
disease: Implication for understanding awareness and coping style
. Dementia The International Journal of Social Research and
Practice, 2,
463–486
.
9.
Corbin, J.
, &
Strauss, A.
(1990).
Grounded theory research: Procedures, canons and evaluative criteria
. Qualitative Sociology, 13,
3–21
.
10.
Dautzenberg, P.
,
van Marum, R.
,
van der Hammen, R.
, &
Paling, H.
(2003).
Patients and families desire a patient to be told the diagnosis of
dementia: A survey by questionnaire on a Dutch memory clinic
. International Journal of Geriatric Psychiatry, 18,
777–779
.
11.
Department of Health
(2001). National service framework for older people.
London: The Stationery Office
.
12.
Department of Health
(2002). Shifting the balance of power: The next steps.
NHS Executive: London
.
13.
Derksen, E.
,
Vernooij-Dassen, M.
,
Gillessen, F.
,
Olde-Rikkert, M.
, &
Scheltens, P.
(2005)
Impact of diagnostic disclosure in dementia on patients and carers:
Qualitative case-study
. International Psychogeriatrics, 17,
19–26
.
14.
Derksen, E.
,
Vernooij-Dassen, M.
,
Gillissen, F.
,
Olde-Rikkert, M.
, &
Scheltens, P.
(in press). Impact of diagnostic disclosure in dementia on patients
and carers: Qualitative case series analysis. Aging &
Mental Health.
15.
Dinant, G.J.
(2004). Diagnosis and decision-making: Undifferentiated
illness and uncertainty in diagnosis and management. In
R. Jones
,
N. Britten
.,
L. Culpepper
,
D.A. Gass
,
R. Grol
,
D. Mant
, et al. (Eds.),Oxford textbook of primary care(pp.
201–203).
Oxford: Oxford University Press
.
16.
Erde, E.
,
Nadal, E.
, &
Scholl,T.
(1988).
On truth telling and the diagnosis of Alzheimer's disease
. Journal of Family Practice, 26,
401–406
.
17.
Glosser, G.
,
Wexler, D.
, &
Balmelli, M.
(1985).
Physicians' and families' perspectives on the medical
management of dementia
. Journal of American Geriatrics Society, 33,
383–391
.
18.
Hellstrom, I.
,
Nolan, M.
, &
Lundh, U.
(2005).
‘We do things together’: A case study of
‘couplehood’ in dementia
. Dementia: The International Journal of Social Research and
Practice, 4,
7–22
.
19.
Husband, H.
(2000).
Diagnostic disclosure in dementia: An opportunity for intervention?International Journal of Geriatric Psychiatry, 15,
544–547
.
20.
Iliffe, S.
, &
Manthorpe, J.
(2004).
The recognition and response to dementia in the community: Lessons for
professional development
, Learning in Health & Social Care, 3,
5–16
.
21.
Iliffe, S.
,
Manthorpe, J.
, &
Eden, A.
(2003).
Sooner or later? Issues in the early diagnosis of dementia in general
practice: A qualitative study
. Family Practice, 20,
376–381
.
22.
Keady, J.
, &
Nolan, M.
(2003). The dynamics of dementia: Working together,
working separately, or working alone? In
M. Nolan
,
U. Lundh
,
G. Grant
, &
J. Keady
(Eds.), Partnerships in family care (pp.
15–32).
Buckingham: Open University Press
.
23.
Marzanski, M.
(2000).
Would you like to know what is wrong with you? On telling the truth to
patients with dementia
. Journal of Medical Ethics, 26,
108–113
.
24.
McWilliams, E.
(1998).
The process of giving and receiving of a diagnosis of dementia: An in-depth
study of sufferers', carers' and consultants' experiences
. PSIGE Newsletter, 64,
18–25
.
25.
Moniz-Cook, E.
, &
Woods, R.
(1997).
Editorial: The role of memory clinics and psychosocial intervention in the
early stages of dementia
. International Journal of Geriatric Psychiatry, 12,
1143–1145
.
26.
Pinner, G.
, &
Bouman,W.P.
(2002).
To tell or not to tell
. International Psychogeriatrics, 14,
127–137
.
27.
Pratt, R.
, &
Wilkinson, H.
(2003).
A psychosocial model of understanding the experience of receiving a
diagnosis of dementia
. Dementia: The International Journal of Social Research and
Practice, 2,
181–191
.
28.
Robinson, L.
,
Clare, L.
, &
Evans, K.
(2005).
Making sense of Dementia and adjusting to loss: Psychological reactions to
a diagnosis of dementia in couples
. Aging and Mental Health, 9,
337–347
.
29.
Rymer, S.
,
Salloway, S.
,
Norton, L.
,
Malloy, P.
,
Correia, S.
, &
Monast, D.
(2002).
Impaired awareness, behavior disturbance and caregiver burden in Alzheimer disease
. American Journal of Alzheimer's Disease and Related
Disorders,16,
248–253
.
30.
van Hout, H.
,
Vernooij-Dassen, M.
,
Bakker, K.
,
Blom, M.
, &
Grol, R.
(2000).
General practitioners on dementia: Tasks, practices and obstacles
. Patient Education and Counselling, 39,
219–225
.
31.
van Hout, H.
,
Vernooij-Dassen, M.
,
Hoefnagels,W.
, &
Grol, R.
(2001).
Measuring the opinions of memory clinic users: Patients, relatives and
general practitioners
. International Journal of Geriatric Psychiatry, 16,
846–851
.
32.
Vernooij-Dassen, M.
, &
Moniz-Cook, E.
(2005).
Improving the quality of in-home interventions in dementia care
. Dementia The International Journal of Social Research and
Practice, 4,
164–169
.
33.
Vernooij-Dassen, M.
,
Moniz-Cook, E.
,
Woods, R.
,
De Lepeleire, J.
,
Leuschner, A.
,
Zanetti, O.
, et al. (2005).
Factors affecting timely recognition and diagnosis of dementia across
Europe: From awareness to stigma
. International Journal of Geriatric Psychiatry, 20,
377–386
.
34.
Vernooij-Dassen, M.
, &
Olde-Rikkert, M.
(2004).
Personal disease management in dementia care
. International Journal of Geriatric Psychiatry,19,
715–717
.
35.
Vernooij-Dassen, M.
,
Osse, H.P.
,
Schadé, E.
, &
Grol, R.
(2005).
Autonomy problems and needs for care in cancer patients in the palliative
phase of the disease
. Journal of Pain and Symptom Management, 30,
264–270
.
36.
West, L.
(2003).Early stage dementia: Reassurance for sufferers and
carers.
Newleaf: Gill & Macmillan
.
37.
Wester, F. (1995). Strategieën voor kwalitatief onderzoek
(Strategies for qualitative research). Bussum: Coutinho.
38.
Woods, R.
,
Moniz-Cook, E.D.
,
Iliffe, S.
,
Campion, P.
,
Vernooij-Dassen, M.
,
Zanetti, O.
, et al. (2003).
Dementia: Issues in early recognition and intervention in primary care
. Journal of the Royal College of Medicine,96,
320–324
.
39.
Young, R.
(2002). Medical experiences and concerns of people with
Alzheimer's disease. In
P. Harris
(Ed.),The person with Alzheimer's disease: Pathways to
understanding the experience (pp. 29–46).
London and Baltimore, MD: The Johns Hopkins
University Press
.
