Dementia is a challenging, progressive set of conditions which present a large care burden to informal, familial carers. A complex array of health and social care services are needed to support people living with dementia. Drawing on the interlinked ‘Duties to Care’ and ‘Dementia Talking’ projects, in this article we focus on British carers’ talk about health and social care services. We explore data from a mixed-method questionnaire (n = 185), four focus groups and eleven interviews with informal carers of people living with dementia using thematic discourse analysis. Three themes are discussed: (1) services as a ‘maze’; (2) services as overly limited – ‘beyond our remit’; and (3) the battle and fighting discourse deployed by these carers. Our analysis highlights that carers find navigating systemic issues in dementia care time-consuming, unpredictable and often more difficult than the caring work they undertake.
AtkinsonJ.HeritageJ. (1984) Structures of social action: Studies in conversation analysis. Cambridge, UK: Cambridge University Press.
5.
BrodatyH.ThomsonC.ThompsonC.FineM. (2005) Why caregivers of people with dementia and memory loss don’t use services. International Journal of Geriatric Psychiatry. 20: 537–546.
6.
CorbettA.StevensJ.AarslandD.DayS.Moniz-CookE.WoodsR.BallardC. (2012) Systematic review of services providing information and/or advice to people with dementia and/or their caregivers. International Journal of Geriatric Psychiatry. 27: 628–636.
7.
Department of Health (2009) Living well with dementia: A national dementia strategy. London, UK: Department of Health.
8.
DohertyD.BenbowS. M.CraigJ.SmithC. (2009) Patients’ and carers’ journeys through older people’s mental health services: Powerful tools for learning. Dementia. 8(4): 501–513.
9.
Drennan, V. M., Cole, L., & Iliffe, S. (2011). A taboo within a stigma? A qualitative study of managing incontinence with people with dementia living at home. BMC Geriatrics, 11, 75. http://www.biomedcentral.com/1471-2318/11/75.
EttersL.GoodallD.HarrisonB. E. (2008) Caregiver burden among dementia patient caregivers: A review of the literature. Journal of the American Academy of Nurse Practitioners. 20: 423–428.
13.
HM Government (2012) Caring for our future: Reforming care and support. London, UK: TSO.
14.
InnesA. (2002) The social and political context of formal dementia care provision. Ageing and Society. 22: 483–499.
15.
InnesA.BlackstockK.MasonA.SmithA.CoxS. (2005) Dementia care provision in rural Scotland: Service users’ and carers’ experiences. Health and Social Care in the Community. 13(4): 354–365.
16.
Harding, R., & Peel, E. (2013) “He was like a zombie”: Off-label prescription of antipsychotic drugs in dementia. Medical Law Review, 21(2), 243–277.
17.
KnappM.PrinceM.AlbaneseE.BanerjeeS.DhanasiriS.FernandezJ. L.StewartR. (2007) Dementia UK: A Report to the Alzheimer’s Society on the prevalence and economic cost of dementia in the UK. London, UK: Alzheimer’s Society.
18.
LloydB. T.StirlingC. (2011) Ambiguous gain: Uncertain benefits of service use for dementia carers. Sociology of Health & Illness. 33(6): 899–913.
19.
MorganD. L. (2007) Paradigms lost and pragmatism regained: Methodological implications of combining qualitative and quantitative methods. Journal of Mixed Methods Research. 1(1): 48–76.
20.
ÖstlundU.KiddL.WengströmY.Rowa-DewarN. (2011) Combining qualitative and quantitative research within mixed method designs: A methodological review. International Journal of Nursing Studies. 48: 369–383.
21.
Peel, E. (forthcoming) ‘The living death of Alzheimer’s’ versus ‘Take a walk to keep dementia at bay’: Representation of dementia in print media and carer discourse. Sociology of Health & Illness.
22.
PeelE.ParryO.DouglasM.LawtonJ. (2005) Taking the biscuit? A discursive approach to managing diet in type 2 diabetes. Journal of Health Psychology. 10(6): 779–791.
23.
PeelE.ParryO.DouglasM.LawtonJ. (2006) ‘It’s no skin off my nose’: Why people take part in qualitative research. Qualitative Health Research. 16(10): 1335–1349.
24.
PensonR. T.SchapiraL.DanielsK. J.ChabnerB. A.LynchT. J. (2004) Cancer as metaphor. The Oncologist. 9: 708–716.
25.
PomerantzA. (1986) Extreme case formulations: A way of legitimizing claims. Human Studies. 9: 119–229.
26.
RobinsonA.ElderJ.EmdenC.LeaE.TurnerP.VickersJ. (2009) Information pathways into dementia care services: Family carers have their say. Dementia. 8(1): 17–37.
27.
RobinsonB. C. (1983) Validation of a caregiver strain index. Journal of Gerontology. 38(3): 344–348.
28.
SchegloffE. A.JeffersonG.SacksH. (1977) The preference for self-correction in the organization of repair in conversation. Language. 53: 361–382.
29.
SchiffrinD. (1987) Discourse markers. Cambridge, UK: Cambridge University Press.
30.
StirlingC.AndrewsS.CroftT.VickersJ.TurnerP.RobinsonA. (2010) Measuring dementia carers’ unmet need for services - An exploratory mixed method study. BMC Health Services Research. 10: 122–122.
