Family carers' accounts of general practice contacts for their relatives with early signs of dementia

Dementia

Volumn 5, Issue 3, 2006, Pages 353-373

  Downs, Murna ^a   Ariss, Steven M b ^a   Grant, Eryk ^a   Keady, John ^b   Turner, Stephen ^c   Bryans, Michelle ^d   Wilcock, Jane ^e   Levin, Enid ^f   O'carroll, Ronan ^g   Iliffe, Steve ^e  

^a UNIVERSITY OF BRADFORD   (United Kingdom)

^b NORTHUMBRIA UNIVERSITY   (United Kingdom)

^c Mackenzie Building   (United Kingdom)

^d The Department of Clinical and Counselling Psychology   (United Kingdom)

^e ROYAL FREE AND UNIVERSITY COLLEGE MEDICAL SCHOOL   (United Kingdom)

^f SOCIAL CARE INSTITUTE FOR EXCELLENCE   (United Kingdom)

^g UNIVERSITY OF STIRLING   (United Kingdom)

Author keywords

evaluation; satisfaction; user involvement

Indexed keywords

EID: 34547784991     PISSN: 14713012     EISSN: None     Source Type: Journal    
DOI: 10.1177/1471301206067111     Document Type: Article

References (54)

1. Adams,T., & Clarke, C. (1999). Dementia care: Developing partnerships inpractice. London: Baillière Tindall.
2. Adams,T., & Gardiner, P. (2005). Communication and interaction within dementia care triads: Developing atheory for relationship-centred care. Dementia: The International Journal of Social Research andPractice, 4(2), 185–205.
3. Alzheimer's Disease Society. (1995). Right from the start: Primary health care anddementia. London: Alzheimer's Disease Society.
4. Anden, A., Andersson, S., & Rudebeck, C. (2005). Satisfaction is not all – patients' perceptions ofoutcomes 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 mentalhealth problems. Literature review report for the NationalCoordinating Centre for NHS Service Delivery and Organization R & D (NCCSDO).
6. Audit Commission (2000). Forget me not Developing mental health services forolder people in England. London: Audit Commission.
7. Audit Commission (2002). Forget me not 2002 Developing mental health servicesfor older people in England. London: Audit Commission.
8. Bamford, C., & Bruce, E. (2000). Defining the outcomes of community care: The perspectives of older peoplewith 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 carefor 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 yourDoctor' improving primary care physicians'care for personswith 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 policyand professional practice. Journal of Advanced Nursing, 30, 975–982.
14. Coyle, J. (1999). Exploring the meaning of ‘dissatisfaction’ with healthcare: 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 forcarers. 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 dementiadiagnosis 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 familiesabout the condition? A survey of experiences in Scotland. Dementia: the International Journal of Social Research andPractice, 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 andmanagement 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 ofpersons with Alzheimer's disease. Gerontologist, 30, 604–609.
25. Fortinsky, R., Leighton, A., & Wasson, J. (1995). Primary care physicians' diagnostic, management, and referralpractices for older persons and families affected by dementia. Research on Ageing, 17, 124–148.
26. Hall, J. (1995). Affective and nonverbal aspects of the medicalvisit. In M. Lipkin Jr, S. Putnam, & A. Lazare (Eds.),The medical interview: Clinical care,education andresearch(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-givingcareer (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 InternationalJournal, 13(1), 29–41.
31. Manthorpe, J., Iliffe, S., & Eden, A. (2003). Testing Twigg and Atkin's typology of caring: A study of primarycare professionals' perceptions of dementia care using a modifiedfocus group method. Health and Social Care in theCommunity, 11(6), 477–485.
32. Moriarty, J., & Webb, S. (2000). Part of their lives: Community care for older peoplewith 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'tknow what I like': Cognitive impairment and quality of liferesponses 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 modelof 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 caregiversof dementia patients. Ageing and Mental Health, 6(1), 62–71.
37. Parker, G. (1990). With due care and attention: A review of research oninformal care. London: Family Policy Studies Centre.
38. Parker, G. (1999). Impact of the NHS and Community Care Act (1990) oninformal carers. In Royal Commission on Long Term Care, Withrespect to old age: Long term care – Rights and responsibilities: Areport by The Royal Commission on Long Term Care,Vol. 2, (pp.51–68). London: The Stationery Office.
39. Pfaffenburger, B. (1988). Microcomputer applications in qualitativeresearch. Qualitative Research Methods Series 14. Thousand Oaks, CA: Sage.
40. Pusey, H., & Richards, D. (2001). A systematic review of the effectiveness of psychosocial interventions forcarers 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 andmeasurement 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: Across-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 theCommunity, 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 thediagnosis and management of dementia. Age & Ageing, 33, 461–467.
46. Twigg, J. (1989). Models of carers: How do social care agencies conceptualise theirrelationship with informal carers? Journal of Social Policy, 18(1), 53–66.
47. Twigg, J., & Atkin, K. (1994). Carers perceived: Policy and practice in informalcare. Buckingham: Open University Press.
48. Wald, C., Fahy, M., & Livingston, G. (2003). What to tell dementia caregivers – the rule of threes. International Journal of GeriatricPsychiatry, 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 generalpractice 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 withcognitive 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 satisfactionwith family physicians. Quality Management in HealthCare, 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.