People with dementia and carers’ experiences of dementia care and services: Outcomes of a focus group study

Dementia

Volumn 14, Issue 6, 2015, Pages 769-787

  Sutcliffe, Caroline L ^a   Roe, Brenda ^a,b   Jasper, Rowan ^a   Jolley, David ^a   Challis, David J ^a  

^a UNIVERSITY OF MANCHESTER   (United Kingdom)

^b EDGE HILL UNIVERSITY   (United Kingdom)

Author keywords

care services; carers; dementia strategy; diagnosis; focus group

Indexed keywords

AGED; CAREGIVER; DEMENTIA; GREAT BRITAIN; HEALTH CARE DELIVERY; HEALTH SERVICE; HUMAN; INFORMATION PROCESSING; LONGITUDINAL STUDY; MIDDLE AGED; SUPPLY AND DISTRIBUTION; VERY ELDERLY;

AGED; AGED, 80 AND OVER; CAREGIVERS; DEMENTIA; FOCUS GROUPS; GREAT BRITAIN; HEALTH SERVICES; HEALTH SERVICES ACCESSIBILITY; HUMANS; LONGITUDINAL STUDIES; MIDDLE AGED;

EID: 84946417093     PISSN: 14713012     EISSN: 17412684     Source Type: Journal    
DOI: 10.1177/1471301213511957     Document Type: Article

References (56)

1. S.AhmadM.OrrellS.IliffeA.Gracie (2010) GPs’ attitudes, awareness, and practice regarding early diagnosis of dementia. British Journal of General Practice60(578): 360–365.
2. All-Party Parliamentary Group (APPG) on Dementia (2012) Unlocking diagnosis: The key to improving the lives of people with dementia, London, England: Alzheimer’s Society.
3. Alzheimer's Research Trust. (2010). Dementia 2010. The economic burden of dementia and associated research funding in the United Kingdom. University of Oxford, Oxford, England: Health Economics Research Centre. Retrieved from: http://www.dementia2010.org/reports/Dementia2010Full.pdf
4. Alzheimer’s Society (2008) The dementia tax, London, England: Alzheimer's Society.
5. Alzheimer’s Society (2012) Dementia 2012: A national challenge, London, England: Alzheimer's Society.
6. Audit Commission (2002) Forget me not 2002: Developing mental health services for older people in England, London, England: Audit Commission.
7. S.Banerjee (2012) Policy to enable people to live well with dementia: Development of the national dementia strategy for England. In: A.InnesF.KellyL.McCabe (eds) Key issues in evolving dementia care – International theory-based policy and practice, London, England: Jessica Kingsley, pp. 106–121.
8. P.ChuJ.EdwardsR.LevinJ.Thomson (2000) The use of clinical case management for early stage Alzheimer’s patients and their families. American Journal of Alzheimer’s Disease and Other Dementias15(5): 284–290.
9. Department of Health (2001) The national service framework for older people, London, England: Department of Health.
10. Department of Health (2008) Guidance on nominating a consultee for research involving adults who lack capacity to consent, London, England: Department of Health.
11. Department of Health (2009a) Living well with dementia. A national dementia strategy, London, England: Department of Health.
12. Department of Health. (2009b). Living well with dementia – A national dementia strategy. Demonstrator site programme. Retrieved from http://www.healthcare-today.co.uk/doclibrary/documents/pdf/180_living_well_with_dementia_demonstrator_site_programme.pdf
13. Department of Health. (2010). Quality outcomes for people with dementia: Building on the work of the national dementia strategy. London, England: Author. Retrieved from https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/135771/dh_119828.pdf.pdf
14. Department of Health (2011) Case for change – Community based services for people with dementia, London, England: Department of Health.
15. Department of Health (2012) Prime Minister’s challenge on dementia – Delivering major improvements in dementia care and research by 2015, London, England: Department of Health.
16. M.Downs (2011) End of life care for older people with dementia: Priorities for research and service development. In: M.GottC.Ingleton (eds) Living with ageing and dying, Oxford, England: Oxford University Press, pp. 247–251.
17. A.FleisherJ.Corey-Bloom (2010) The natural history of Alzheimer’s disease. In: A.BurnsJ.O’BrienD.Ames (eds) Dementia, 4th ed. London, England: Hodder Arnold, pp. 405–416.
18. J.GeorgesS.JansenJ.JacksonA.MeyrieuxA.SadowskaM.Selmes (2008) Alzheimer’s disease in real life – The dementia carer’s survey. International Journal of Geriatric Psychiatry23: 546–551.
19. C.GlendinningD.ChallisJ.L.FernándezS.JacobsK.JonesM.KnappM.Wilberforce (2008) Evaluation of the individual budgets pilot programme – Final report, University of York, York, England: Social Policy Research Unit.
20. L.GreeningI.GreavesN.GreavesD.Jolley (2009) Positive thinking on dementia in primary care: Gnosall Memory Clinic. Community Practitioner82(5): 20–23.
21. Health Foundation (2011) Spotlight on dementia care: A health foundation improvement report, London, England: The Health Foundation.
22. J.C.HughesC.Baldwin (2006) Ethical issues in dementia care: Making difficult decisions, London, England: Jessica Kingsley.
23. M.HurdP.MartorellA.DelavandeK.MullenK.Langa (2013) Monetary costs of dementia in the United States. The New England Journal of Medicine368: 1326–1334.
24. A.Innes (2002) The Social and political context of formal dementia care provision. Ageing and Society22: 483–499.
25. D.JolleyI.GreavesN.GreavesL.Greening (2010) Three tier memory service for a region: Responsible, rational and affordable. Journal of Dementia Care18(1): 26–29.
26. J.Kitzinger (1995) Qualitative research. Introducing focus groups. British Medical Journal311(7000): 299–302.
27. M.KnappM.PrinceE.AlbaneseS.BanerjeeS.DhanasiriJ.L.FernándezR.Stewart (2007) Dementia UK: The full report, London, England: Alzheimer’s Society.
28. K.B.LindstromR.BoschR.M.CohenP.FredericksG.R.HallP.HarringtonH.Zaremba (2011) The continuum of care. In: G.A.MartinM.N.Sabbagh (eds) Palliative care for advanced Alzheimer’s and dementia. Guidelines and standards for evidence based care, New York, NY: Springer, pp. 11–23.
29. A.MasonH.WeatherllyK.SpilsburyH.ArkseyS.GolderJ.AdamsonC.Glendinning (2007) A systematic review of the effectiveness and cost-effectiveness of different models of community-based respite care for frail older people and their carers. Health Technology Assessment11(15): 1–194.
30. Ministry of Health Welfare and Sports (2008) Caring for people with dementia (DLZ/Z-U-2853804), The Hague, the Netherlands: Ministry of Health Welfare and Sports.
31. S.L.MitchellD.K.KielyM.B.Hamel (2004a) Dying with advanced dementia in the nursing home. Archives of Internal Medicine164: 321–326.
32. S.L.MitchellD.K.KielyM.B.HamelP.S.ParkJ.N.MorrisB.E.Fries (2004b) Estimating prognosis for nursing home residents with advanced dementia. Journal of American Medical Association291(22): 2734–2740.
33. D.L.Morgan (1993) Successful focus groups, London, England: Sage.
34. J.MoriartyS.Webb (2000) Part of their lives: Community care for older people with dementia, Bristol, England: The Policy Press.
35. National Audit Office (NAO) (2007) Improving services and support for people with dementia, London, England: The Stationary Office.
36. National Audit Office (NAO) (2010) Improving dementia services in England – An interim report (HC82 2009–2010), London, England: Author.
37. National Institute for Health and Clinical Excellence and Social Care Institute for Excellence (NICE/SCIE). (2006). Dementia: Supporting people with dementia and their carers in health and social care. Retrieved from http://www.nice.org.uk/nicemedia/live/10998/30318/30318.pdf
38. NHS Choices. (2010). NHS choices information prescriptions. Retrieved from http://www.nhs.uk/yourhealth/pages/informationprescriptions.aspx
39. Norwegian Ministry of Health and Care Services (2007) Dementia plan 2015, making the most of good days, subplan of care plan 2015, Oslo, Norway: Norwegian Government Administration Services Distribution Services.
40. K.OrnsteinJ.Gaugler (2012) The problem of “problem behaviours”: A systematic review of the association between individual patient behavioural and psychological symptoms and caregiver depression and burden within the dementia patient-caregiver dyad. International Psychogeriatrics24(10): 1536–1552.
41. S.PeaceH.-W.WahlH.MollenkopfF.Oswald (2007) Environment and ageing. In: J.Bond (ed). Ageing in society: European perspectives on gerontology, London, England: Sage, pp. 209–234.
42. J.PhillipsK.AjrouchS.Hillcoat-Nalletamby (2010) Key concepts in social gerontology, London, England: Sage, pp. 70–74.
43. C.PhillipsonJ.Baars (2007) Social theory and social ageing. In: J.Bond (ed). Ageing in society: European perspectives on gerontology, London, England: Sage, pp. 68–84.
44. L.Pickard (2004) The effectiveness and cost-effectiveness of support and services to informal carers of older people. A review of the literature prepared for the Audit Commission, London, England: Audit Commission.
45. G.RaitK.WaltersC.BottomleyI.PetersonS.Illiffe (2010) Survival of people with clinical diagnosis of dementia in primary care: Cohort study. British Medical Journal341: c3584–c3584. doi:10.1136/bmj.c3584.
46. Republique Francaise. (2008). National plan for “Alzheimer and related diseases” 2008-2012. Retrieved from http://www.plan-alzheimer.gouv.fr/IMG/pdf/Plan_Alzheimer_2008-2012_uk.pdf
47. E.L.SampsonI.Thune-BoyleR.KukkastenvehmasL.JonesA.TookmanM.KingM.R.Blanchard (2008) Palliative care in advanced dementia: A mixed methods approach for the development of a complex intervention. BMC Palliative Care7(8): doi:10.1186/1472-684X-7-8.
48. C.ShawR.McNamaraK.AbramsR.Cannings-JohnK.HoodM.LongoK.Williams (2009) Systematic review of respite care in the frail elderly. Health Technology Assessment13: 20–20.
49. P.E.Stevens (1996) Focus groups: Collecting aggregate-level data to understand community health phenomena. Public Health Nursing13(3): 170–176.
50. H.VerbeekG.MeyerH.Leino-KilpiA.ZabaleguiI.R.HallbergK.Saksthe Right Time Place Care Consortium (2012) A European study investigating patterns of transition from home care towards institutional dementia care: The protocol of a RightTimePlaceCare study. BMC Public Health12: 68–68.
51. M.Vernooij-DassenE.M.Moniz-CookR.WoodsJ.De LepeleireA.LeuschnerO.Zanettithe INTERDEM group (2005) Factors affecting timely recognition and diagnosis of dementia across Europe: From awareness to stigma. International Journal of Geriatric Psychiatry20: 377–386.
52. D.Wanless (2006) Securing good care for older people. Taking a long-term view, London, England: King’s Fund.
53. A.WimoL.JönssonJ.BondM.PrinceB.& Winbladon behalf of Alzheimer Disease International (2013) The worldwide economic impact of dementia 2010. Alzheimer’s and Dementia9(1): 1–11.e3.
54. R.WittenbergA.Comas-HerreraD.KingJ.MalleyL.PickardR.Darton (2006) Future demand for long-term care, 2002 to 2041: Projections of demand for long-term care for older people in England (Discussion Paper 2330), University of Kent, Canterbury, Kent: Personal Social Services Research Unit.
55. World Health Organisation (2012) Dementia. A public health priority, Geneva, Switzerland: World Health Organisation.
56. S.ZaritA.Edwards (2008) Family caregiving: Research and clinical intervention. In: B.WoodsL.Clare (eds) Handbook of the clinical psychology of ageing, 2nd ed. Chichester, England: John Wiley & Sons, pp. 255–288.