The role of families in supporting people with dementia is widely acknowledged in
literature and UK government policy. The role of general practice in ensuring early
and effective support for people living with mental health problems including
dementia is also enshrined in UK policy. As part of a larger study, a total of 122
carers were asked to rate predefined aspects of the primary care response. For some
responses they were also asked to provide a reason for their rating. The purpose of
this study was to examine carers' accounts of contacts with general
practitioners (GPs) and general practice teams when they were first approached with
concerns about their relative. Findings suggest that, on average, carers rate the
service as being at least ‘good'. However, their accounts
describe a wide variety of experiences and demonstrate that expressed satisfaction
does not necessarily reflect a satisfactory service. Both practitioner-related and
carer-related issues were cited as reasons for their ratings. Implications for
practice and research are discussed.
Adams,T.
, &
Clarke, C.
(1999). Dementia care: Developing partnerships in
practice.
London: Baillière Tindall
.
2.
Adams,T.
, &
Gardiner, P.
(2005).
Communication and interaction within dementia care triads: Developing a
theory for relationship-centred care
. Dementia: The International Journal of Social Research and
Practice,4(2),
185–205
.
3.
Alzheimer's Disease Society
. (1995). Right from the start: Primary health care and
dementia.
London: Alzheimer's Disease Society
.
4.
Anden, A.
,
Andersson, S.
, &
Rudebeck, C.
(2005).
Satisfaction is not all – patients' perceptions of
outcomes of general practice consultations, a qualitative study
. BMC Family Practice,6,
43-43
. Retrieved 13 December 2005 from: www.biomedcentral.com/1471–2296/6/43.
5.
Arksey, H.
,
O'Malley, L.
,
Baldwin, S.
,
Harris, J.
, &
Mason, A.
(2002). Services to support carers of people with mental
health problems. Literature review report for the National
Coordinating Centre for NHS Service Delivery and Organization R & D (NCCSDO).
6.
Audit Commission
(2000). Forget me not Developing mental health services for
older people in England.
London: Audit Commission
.
7.
Audit Commission
(2002). Forget me not 2002 Developing mental health services
for older people in England.
London: Audit Commission
.
8.
Bamford, C.
, &
Bruce, E.
(2000).
Defining the outcomes of community care: The perspectives of older people
with dementia and their carers
. Ageing and Society, 20,
543–570
.
9.
Briggs, K.
, &
Askham, J.
(1999). The needs of people with dementia and those who care
for them.
London: Alzheimer's Society
.
10.
Brodaty, H.
, &
Green, A.
(2000). Family carers for people with dementia.
In
J. O'Brien
,
D. Ames
&
A. Burns
(Eds),Dementia.
London: Arnold
.
11.
Brodaty, H.
,
Green, A.
, &
Koschera, A.
(2003).
Meta-analysis of psychosocial interventions for caregivers of people with dementia
. Journal of the American Geriatrics Society, 51,
675–664
.
12.
Cherry, D.
, &
Plauche-Barclay, M.
(2003, November).
Consumer activation – ‘Partnering with your
Doctor' improving primary care physicians'care for persons
with dementia, a pre-conference intensive
. Gerontological Society of America Annual Meeting,
San Diego, USA.
13.
Clarke, C.L.
(1999).
Family caregiving for people with dementia: Some implications for policy
and professional practice
. Journal of Advanced Nursing, 30,
975–982
.
14.
Coyle, J.
(1999).
Exploring the meaning of ‘dissatisfaction' with health
care: The importance of ‘personal identity threat'
. Sociology of Health and Illness, 21,
95–124
.
15.
Department of Health
(1999a). Caring about carers A national strategy for
carers. London:
16.
Department of Health
. (1999b). National service framework for mental health.
London: The Stationery Office
.
17.
Department of Health
(2001). National service framework for older people.
London: The Stationery Office
.
18.
Downs, M.
(1996).
The role of general practice and the primary care team in dementia
diagnosis and management
. International Journal of Geriatric Psychiatry,11,
937–942
.
19.
Downs, M.
,
Clibbens, R.
,
Rae, C.
,
Cook, A.
, &
Woods, R.T.
(2002).
What do general practitioners tell people with dementia and their families
about the condition? A survey of experiences in Scotland
. Dementia: the International Journal of Social Research and
Practice,1(1),
47–58
.
20.
Downs, M.
,
Turner, S.
,
Bryans, M.
,
Wilcock, J.
,
Keady, J.
,
Levin, E.
, et al. (2006).
Effectiveness of educational interventions in improving detection and
management of dementia in primary care: A cluster randomised controlled study
. British Medical Journal,332,
692–696
.
21.
Ellins, J.
, &
Coulter, A.
(2005). How engaged are people with their health care:
Findings of a national telephone survey.
Oxford: Picker Institute
.
22.
Fielding, J.
(1993). Coding and managing data. In
N. Gilbert
(Ed.),Researching social life (pp.
227–251).
London: Sage
.
23.
Forbat, L.
(2002).
‘Tinged with bitterness': Re-presenting stress in family care
. Disability and Society,17,
159–168
.
24.
Fortinsky, R.
, &
Hathaway,T.
(1990).
Information and service needs among active and former family caregivers of
persons with Alzheimer's disease
. Gerontologist,30,
604–609
.
25.
Fortinsky, R.
,
Leighton, A.
, &
Wasson, J.
(1995).
Primary care physicians' diagnostic, management, and referral
practices for older persons and families affected by dementia
. Research on Ageing,17,
124–148
.
26.
Hall, J.
(1995). Affective and nonverbal aspects of the medical
visit. In
M. Lipkin Jr
,
S. Putnam
, &
A. Lazare
(Eds.),The medical interview: Clinical care,education and
research(pp. 495–504).
New York: Springer
.
27.
Iliffe, S.
,
Wilcock, J.
, &
Haworth, D.
(2006).
Obstacles to shared care for patients with dementia: A qualitative study
. Family Practice,23,
353–362
.
28.
Keady, J.
, &
Nolan, M.
(2003). The dynamics of dementia: Working together,
working separately, or working alone? In
M.R. Nolan
,
U. Lundh
,
G. Grant
, &
J. Keady
(Eds.), Partnerships in family care: Understanding the care-giving
career (pp. 15–32).
Buckingham: Open University Press
.
29.
Levin, E.
,
Sinclair, I.
, &
Gorbach, P.
(1989). Families,services and confusion in old age.
Aldershot: Avebury
.
30.
Liaschenko, J.
, &
Fisher, A.
(1999).
Theorizing the knowledge that nurses use in the conduct of their work
. Scholarly Inquiry for Nursing Practice: An International
Journal,13(1),
29–41
.
31.
Manthorpe, J.Iliffe, S.
, &
Eden, A.
(2003).
Testing Twigg and Atkin's typology of caring: A study of primary
care professionals' perceptions of dementia care using a modified
focus group method
. Health and Social Care in the
Community,11(6),
477–485
.
32.
Moriarty, J.
, &
Webb, S.
(2000). Part of their lives: Community care for older people
with dementia.
Bristol: Policy Press
.
33.
Mozley, C.
,
Huxley, P.
,
Sutcliffe, C.
,
Bagley, H.
,
Burns, A.
,
Challis, D.
, &
Cordingley, L.
(1999).
‘Not knowing where I am doesn't mean I don't
know what I like’: Cognitive impairment and quality of life
responses in elderly people
. International Journal of Geriatric Psychiatry,14,
776–783
.
34.
Muhr,T.
(1991).
ATLAS/ti: A prototype for the support of text interpretation
. Qualitative Sociology,14,
349–371
.
35.
Nolan, M.
,
Grant, G.
, &
Keady, J.
(1996). Understanding family care: A multidimensional model
of caring and coping.
Buckingham: Open University Press
.
36.
Owen, J.
,
Roth, D.
,
Stevens, A.
,
McCarty, H.
,
Clay, O.
,
Wadley,V.
et al. (2002).
Association of life events and psychological distress in family caregivers
of dementia patients
. Ageing and Mental Health,6(1),
62–71
.
37.
Parker, G.
(1990). With due care and attention: A review of research on
informal care.
London: Family Policy Studies Centre
.
38.
Parker, G.
(1999). Impact of the NHS and Community Care Act (1990) on
informal carers. In Royal Commission on Long Term Care,With
respect to old age: Long term care – Rights and responsibilities: A
report by The Royal Commission on Long Term Care,Vol. 2, (pp.
51–68).
London: The Stationery Office
.
39.
Pfaffenburger, B.
(1988). Microcomputer applications in qualitative
research. Qualitative Research Methods Series 14.
Thousand Oaks, CA: Sage
.
40.
Pusey, H.
, &
Richards, D.
(2001).
A systematic review of the effectiveness of psychosocial interventions for
carers of people with dementia
. Aging & Mental Health, 5,
63–62
.
41.
Ramsay, J.
,
Campbell, J.
,
Schroter, S.
,
Green, J.
, &
Roland, M.
(2000).
The General Practice Assessment Survey (GPAS): Tests of data quality and
measurement properties
. Family Practice,17(5),
372–379
.
42.
Schers, H.
,
van den Hoogen, H.
,
Bor, H.
,
Grol, R.
, &
van den Bosch,W.
(2005).
Familiarity with a GP and patients' evaluations of care: A
cross-sectional study
. Family Practice,22(1),
15–19
.
43.
Seddon, D.
, &
Robinson, C.
(2001).
Carers of older people with dementia: Assessment and the Carers Act
. Journal of Health and Social Care in the
Community,9(3),
151–158
.
44.
Richards,T.
, &
Richards, L.
(1994). Using computers in qualitative research.
In
N. Denzin
&
Y. Lincoln
(Eds.),Handbook of qualitative research(pp.
445–462).
London: Sage
.
45.
Turner, S.
,
Iliffe, S.
,
Downs, M.
,
Wilcock, J.
,
Bryans, M.
,
Levin, E.
, et al. (2004).
General practitioners' knowledge, confidence and attitudes in the
diagnosis and management of dementia
. Age & Ageing,33,
461–467
.
46.
Twigg, J.
(1989).
Models of carers: How do social care agencies conceptualise their
relationship with informal carers?Journal of Social Policy,18(1),
53–66
.
47.
Twigg, J.
, &
Atkin, K.
(1994). Carers perceived: Policy and practice in informal
care.
Buckingham: Open University Press
.
48.
Wald, C.
,
Fahy, M.
, &
Livingston, G.
(2003).
What to tell dementia caregivers – the rule of threes
. International Journal of Geriatric
Psychiatry,18(4),
313–317
.
49.
Wensing, M.
,
Baker, R.
,
Szecsenyi, J.
, &
Grol, R.
;
EUROPEP Group
(2004).
Impact of national health care systems on patient evaluations of general
practice in Europe
. Health Policy,68(3),
353–357
.
50.
Whitlatch, C.
,
Feinberg, L.
, &
Tucke, S.
(2005).
Measuring the values and preferences for everyday care of persons with
cognitive impairment and their family caregivers
. Gerontologist,45(3),
370–380
.
51.
Wilson, H.
(1989).
Family caregivers: The experience of Alzheimer's disease
. Applied Nursing Research,2(1),
40–45
.
52.
Wolosin, R.
(2005).
The voice of the patient: A national, representative study of satisfaction
with family physicians
. Quality Management in Health
Care,14(3),
155–164
.
53.
Zarit, S.
(1989).
Do we need another ‘Stress and care-giving' study?Gerontologist,29,
147–148
.
54.
Zarit, S.
,
Orr, N.K.
, &
Zarit, J.
(1985). The hidden victims of Alzheimer's disease:
Families under stress.
New York: New York University Press
.
