People with dementia in the early stages currently experience a care gap, which self-management may address. We explore perceived barriers to self-management. Using a systematic approach (logic mapping), 19 participants (people with dementia, carers, health care professionals and charity representatives) described self-management barriers facing people living with dementia. Thematic content analysis revealed six main themes: the lived experience of dementia, diagnosis, role of carer/family, impact of health care professionals, organisation of health services and societal views. People with dementia were seen as passive recipients of care, unable to self-manage owing to the impact of dementia on cognitive abilities. The need for interventions that are largely emotion focused, encourage activity maintenance and improve quality of life are described. Barriers to self-management exist at multiple levels, suggesting a whole-systems approach is required.
Alzheimer's Society, & Mental Health Foundation (2008) Dementia: Out of the shadows. London: Alzheimer's Society.
2.
BarlowJ.EllardD. R.HainsworthJ. M.JonesF. R.FisherA. (2005) A review of self-management interventions for panic disorders, phobias and obsessive-compulsive disorders. Acta Psychiatrica Scandinavica. 111: 272–285.
3.
BarlowC.CookeD.MulliganK.BeckE.NewmanS. (2010) A critical review of self-management and educational interventions in inflammatory bowel disease. Gastroenterology Nursing. 33: 11–18.
4.
BarlowJ. (2001) How to use education as an intervention in osteoarthritis. Best Practice Research Clinical Rheumatology. 15: 545–558.
5.
BarlowJ.WrightC.SheasbyJ.TurnerA.HainsworthJ. (2002) Self-management approaches for people with chronic conditions: a review. Patient Education & Counseling. 48: 177–187.
6.
BodenheimerT.LorigK.HolmanH.GrumbachK. (2002) Patient self-management of chronic disease in primary care. Journal of the American Medical Association. 288: 2469–2475.
7.
Bodenheimer, T., MacGregor, K., & Shafiri, C. (2005). Helping patients manage their chronic conditions. Oakland: California Health Care.
8.
BuryM.NewbouldJ.TaylorD. (2005) A rapid review of the current state of knowledge regarding lay-led self-management of chronic illness. London: National Institute of Clinical Excellence.
9.
CahillS. (2010) Developing a national dementia strategy for Ireland. International Journal of Geriatric Psychiatry. 25: 912–916.
10.
ChestonR.BenderM.ByattS. (2000) Involving people who have dementia in the evaluation of services: A review. Journal of Mental Health. 9: 471–479.
11.
ChungJ. C. C. (2004) Activity participation and well-being of people with dementia in long-term-care settings. Occupation, Participation and Health. 24: 22–22.
12.
ClareL.RowlandsJ. M.QuinR. (2008) Collective strength: The impact of developing a shared social identity in early-stage dementia. Dementia. 7: 9–30.
13.
CooksyL. J.GillP.KellyP. A. (2001) The program logic model as an integrative framework for a multimethod evaluation. Evaluation and Program Planning. 24: 119–128.
14.
Cotrell, V. (2007). Assessment of individuals with dementia. In C. B. Cox (Ed.), Dementia and social work practice: Research and interventions (pp. 5–68). New York: Springer.
15.
DaviesN.BatehupL. (2010) Self-management support for cancer survivors: Guidance for developing interventions: An update of the evidence. London: Macmillan Cancer Support.
16.
DavisL. S. (2005) Educating individuals with dementia: perspectives for rehabilitation professionals. Topics in Geriatric Rehabilitation Motivation. 21: 304–314.
17.
Department of Health (2009) Living well with dementia: A national dementia strategy. London: Department of Health.
18.
Department of Health (2010a) The NHS outcomes framework 2011/12. London: Department of Health.
DiIorioC.Osborne ShaferP.LetzR.HenryT.SchomerD. L.YeagerK. (2003) The association of stigma with self-management and perceptions of health care among adults with epilepsy. Epilepsy & Behavior. 4: 259–267.
21.
DiIorioC.ShaferP. O.LetzR.HenryT. R.SchomerD. L.YeagerK.ProjectE. S. G. (2004) Project EASE: a study to test a psychosocial model of epilepsy medication management. Epilepsy & Behavior. 5: 926–936.
22.
FosterG.TaylorS.EldridgeS.RamsayJ.GriffithsC. (2007) Self-management education programmes by lay leaders for people with chronic conditions. Cochrane Database of Systematic Reviews. 4. , Art No: CD005108.
23.
GraffM. J.Vernooij-DassenM. J.ThijssenM.DekkerJ.HoefnagelsW. H.RikkertM. G. (2006) Community based occupational therapy for patients with dementia and their care givers: randomised controlled trial. British Medical Journal (Clinical Research Ed). 333: 1196–1196.
24.
GraneheimU. H.LundmanB. (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today. 24: 105–112.
25.
GreenJ.ThorogoodN. (2005) Qualitative methods for health research. London: Sage.
26.
GruberR. A.ElmanJ. G.HuijbregtsM. P. J. (2008) Self-management programs for people with Parkinson's disease: A program evaluation approach. Topics in Geriatric Rehabilitation. 24: 141–150.
27.
HsiehH. -F.ShannonS. E. (2005) Three approaches to qualitative content analysis. Qualitative Health Research. 15: 1277–1288.
28.
JacobyA.SnapeD.BakerG. A. (2005) Epilepsy and social identity: The stigma of a chronic neurological disorder. The Lancet Neurology. 4: 171–178.
29.
KitwoodT. (1990) The dialectics of dementia, with particular reference to Alzheimer's disease. Ageing and Society. 10: 177–196.
30.
KitwoodT. (1997) Dementia reconsidered: The person comes first. Buckingham: Open University Press.
31.
KnappM.Comas-HerreraA.SomaniA.BanerjeeS. (2007) Dementia: international comparisons: Summary report for the National Audit Office. London: Personal Social Services Research Unit and London School of Economics and Political Science.
32.
Koch, T., Iliffe, S., & EVIDEM-ED Project. (2010). Rapid appraisal of barriers to the diagnosis and management of patients with dementia in primary care: a systematic review. BMC Family Practice, 11. doi 10.1186/1471-2296-11-52.
33.
LorigK. R.RitterP.DostA.PlantK.LaurentD.McNeilI. (2008) The expert patients programme online, a 1-year study of an internet-based self-management programme for people with long-term conditions. Chronic Illness. 4: 247–256.
34.
Luengo-Fernandez, R., Leal, J., & Gray, A. (2010). Dementia 2010: The economic burden of dementia and associated research funding in the United Kingdom. A report produced by the Health Economics Research Centre for the Alzheimer's Research Trust. Oxford: University of Oxford.
35.
MacRaeH. (2010) Managing Identity while living with Alzheimer's disease. Qualitative Health Research. 20: 293–305.
36.
MatherL. (2006) Memory Lane Cafe: Follow-up support for people with early stage dementia and their families and carers. Dementia: The International Journal of Social Research and Practice. 5: 290–293.
37.
MilesM. S.Holditch-DavisD.EronJ.BlackB. P.PedersenC.HarrisD. A. (2003) An HIV self-care symptom management intervention for African American Mothers. Nursing Research. 52: 350–360.
38.
Moniz CookE. D.ManthorpeJ. (2009a) Early psychosocial interventions in dementia: Evidence based practice. London: Jessica Kingsley Publishers.
39.
Moniz CookE. D.ManthorpeJ. (2009b) Introduction: Personalising psychosocial interventions. In: Moniz CookE. D.ManthorpeJ. (ed.) Early psychosocial interventions in dementia: evidence based practice. London: Jessica Kingsley Publishers, pp. 11–36.
40.
MontgomeryE. B.LibermanA.SinghG.FriesJ. F. (1994) Patient education and health promotion can be effective in Parkinson's disease: A randomized controlled trial. The American Journal of Medicine. 97: 429–435.
41.
MountainG. A. (2006) Self-management for people with early dementia: An exploration of concepts and supporting evidence. Dementia: The International Journal of Social Research and Practice. 5: 429–446.
42.
National Audit Office (2007) Improving services and support for people with dementia. London: National Audit Office.
43.
PeacockS.ForbesD.Markle-ReidM.HawranikP.MorganD.JansenL.HendersonS. R. (2009) The positive aspects of the caregiving journey with dementia: using a strengths-based perspective to reveal opportunities. Journal of Applied Gerontology. 29(5): 640–659.
44.
PrinceM.AcostaD.AlbaneseE.ArizagaR.FerrirC. P.GuerraM.WortmannM. (2008) Ageing and dementia in low and middle income countries - Using research to engage with public policy markers. International Review of Psychiatry. 20: 332–343.
45.
RengerR.HurleyC. (2006) From theory to practice: Lessons learned in the application of the ATM approach to developing logic models. Evaluation and Program Planning. 29: 106–119.
46.
RosowK.HolzapfelA.KarlawishJ. H. T.BaumgartM.BainL. J.KhachaturianA. S. (2011) Countrywide strategic plans on Alzheimer's disease: Developing the framework for the international battle against Alzheimer's disease. Alzheimer's & Dementia. 7: 615–621.
47.
ShevilE.FinlaysonM. (2009) Process evaluation of a self-management cognitive program for persons with multiple sclerosis. Patient Education and Counseling. 76: 77–83.
48.
SteverinkN.LindenbergS.SlaetsJ. (2008) How to understand and improve older people’s self-management of wellbeing. European Journal of Ageing. 2: 235–244.
49.
The Scottish Government (2010) Scotland's national dementia strategy. Edinburgh: The Scottish Government.
50.
TraversC.Martin-KhanM.LieD. (2009) Barriers and enablers of health promotion, prevention and early intervention in primary care: Evidence to inform the Australian national dementia strategy. Australasian Journal on Ageing. 28: 51–57.
51.
TriggR.SkevingtonS. M.JonesR. W. (2007) How can we best assess the quality of life of people with dementia? The Bath Assessment of Subjective Quality of Life in Dementia (BASQID). The Gerontologist. 47: 789–797.
