The experiences of people with young-onset dementia: A meta-ethnographic review of the qualitative literature

Maturitas

Volumn 92, Issue , 2016, Pages 102-109

  Greenwood, Nan ^a   Smith, Raymond ^a  

^a ST GEORGE'S UNIVERSITY OF LONDON   (United Kingdom)

Author keywords

Dementia; Experiences; Meta ethnography; Review; Young onset

Indexed keywords

ANGER; ANXIETY; CINAHL; COPING BEHAVIOR; DATA BASE; DATA EXTRACTION; DATA SYNTHESIS; DEMENTIA; EMBASE; EMOTION; EMPLOYMENT; ETHNOGRAPHY; FAMILY; FEAR; FRIEND; FRUSTRATION; GROUPS BY AGE; HELP SEEKING BEHAVIOR; HUMAN; HUMAN RELATION; INDEPENDENCE; LEISURE; MEDICAL LITERATURE; MEDLINE; MEMORY; ONSET AGE; PEER GROUP; PERSONAL EXPERIENCE; POWERLESSNESS; PSYCINFO; QUALITATIVE ANALYSIS; QUALITY CONTROL; REVIEW; SADNESS; SCOPUS; SELF CONCEPT; SELF ESTEEM; SOCIAL EXCLUSION; SOCIAL ISOLATION; SOCIAL STIGMA; SOCIAL SUPPORT; SYSTEMATIC REVIEW; WORK CAPACITY; YOUNG ONSET DEMENTIA; BEHAVIOR; CULTURAL ANTHROPOLOGY; MIDDLE AGED; PERSONAL AUTONOMY; PSYCHOLOGY;

AGE OF ONSET; ANTHROPOLOGY, CULTURAL; DEMENTIA; HUMANS; INTERPERSONAL RELATIONS; MIDDLE AGED; PERSONAL AUTONOMY; POWER (PSYCHOLOGY);

EID: 84982824739     PISSN: 03785122     EISSN: 18734111     Source Type: Journal    
DOI: 10.1016/j.maturitas.2016.07.019     Document Type: Review

References (41)

1. [1] Rossor, M.N., Fox, N.C., Mummery, C.J., Schott, J.M., Warren, J.D., The diagnosis of young-onset dementia. Lancet Neurol. 9:8 (2010), 793–806, 10.1016/s1474-4422(10)70159-9.
2. [2] Johannessen, A., Moller, A., Experiences of persons with early-onset dementia in everyday life: a qualitative study. Dementia 12:4 (2011), 410–424, 10.1177/1471301211430647.
3. [3] Rudman, N., Oyebode, J., Jones, C., Bentham, P., An investigation into the validity of effort tests in a working age dementia population. Aging Ment. Health 15:1 (2011), 47–57, 10.1080/13607863.2010.508770.
4. [4] Lamberta, M., Bickelb, H., Prince, M., Fratiglionid, L., von Straussd, E., Frydeckae, D., Kiejnae, A., Georges, J., Reynishg, E., Estimating the burden of early onset dementia; systematic review of disease prevalence, ‎Eur. J. Neurol. 21:4 (2014), 563–569, 10.1111/ene.12325.
5. [5] Harvey, R., Skelton-Robinson, M., Rossor, M., The prevalence and causes of dementia in people under the age of 65 years. J. Neurol. Neurosurg. Psychiatry 74 (2003), 1206–1209, 10.1136/jnnp.74.9.1206.
6. [6] Lockeridge, S., Simpson, J., The experience of caring for a partner with young onset dementia: how younger carers cope. Dementia 12:5 (2013), 635–651, 10.1177/1471301212440873.
7. [7] van Vliet, D., de Vugt, M.E., Bakker, C., Pijnenburg, Y.A.L., Vernooij-Dassen, M.J.F.J., Koopmans, R.T.C.M., Verhey, F.R.J., Time to diagnosis in young-onset dementia as compared with late-onset dementia. Psychol. Med. 43:2 (2013), 423–432, 10.1017/S0033291712001122.
8. [8] van Vliet, D., de Vugt, M., Aalten, P., Bakker, C., Pijnenburg, Y.A., Vernooij-Dassen, M.J., Koopmans, R.Y., Verhey, F.R., Prevalence of neuropsychiatric symptoms in young-onset compared to late-onset Alzheimer's disease − part 1: findings of the two-year longitudinal NeedYD-study. Dement. Geriatr. Cogn. Disord. 34:5–6 (2012), 319–327, 10.1159/000342824.
9. [9] Mendez, M.F., The accurate diagnosis of early-onset dementia. Int. J. Psychiatry Med. 36:4 (2006), 401–412, 10.2190/q6j4-r143-p630-kw41.
10. [10] Vieira, R.T., Caixeta, L., Machado, S., Silva, A.C., Nardi, A.E., Epidemiology of early-onset dementia: a review of the literature. Clin. Pract. Epidemiol. Ment. Health 9 (2013), 88–95, 10.2174/1745017901309010088.
11. [11] Davies, R., Doran, M., Larner, A.J., Diagnosis and management of early-onset dementia. Prog. Neurol. Psychiatry 15:4 (2011), 12–16, 10.1002/pnp.205.
12. [12] Jefferies, K., Agrawal, N., Early-onset dementia. Adv. Psychiatr. Treat. 15:5 (2009), 380–388, 10.1192/apt.bp.107.004572.
13. [13] Ducharme, F., Kergoat, M.J., Antoine, P., Pasquier, F., Coulombe, R., The unique experience of spouses in early-onset dementia. Am. J. Alzheimers Dis. Other Demen. 28 (2013), 634–641, 10.1177/1533317513494443.
14. [14] McCabe, M., You, E., Tantangelo, G., Hearing their voice: a systematic review of dementia family caregivers’ needs. Gerontologist, 2016, 10.1093/geront/gnw078 Epub ahead of print.
15. [15] Hutchinson, K., Roberts, C., Kurrle, S., Daly, M., The emotional well-being of younger people having a parent with younger dementia. Dementia 0 (2014), 1–20, 10.1177/1471301214532111.
16. [16] Roach, P., Drummond, N., ‘It's nice to have something to do’: early onset dementia and maintaining purposeful activity. J. Psychiatr. Ment. Health Nurs. 21:10 (2014), 889–895, 10.1111/jpm.12154.
17. [17] Pipon-Young, F.E., Lee, K.M., Jones, F., Guss, R., I'm not all gone, I can still speak: the experiences of younger people with dementia. An action research study. Dementia 11:5 (2012), 597–616, 10.1177/1471301211421087.
18. [18] Clemerso, n.S.Walsh, Isaac, C., Towards living well with young onset dementia: an exploration of coping from the perspective of those diagnosed. Dementia 13:4 (2014), 451–466, 10.1177/1471301212474149.
19. [19] Dam, A.E.H., de Vugt, M.E., Klinkenberg, I.P.M., Verhey, F.R.J., van Boxtel, M.P.J., A systematic review of social support interventions for caregivers of people with dementia: are they doing what they promise?. Maturitas 85 (2016), 117–130, 10.1016/j.maturitas.2015.12.008.
20. [20] Beattie, A., Daker-White, G., Gilliard, J., Means, R., ‘How can they tell?’ A qualitative study of the views of younger people about their dementia and dementia care services. Health Soc. Care Community, 12(4), 2004, 10.1111/j.1365-2524.2004.00505.x.
21. [21] Goldberg, E.L., Filling an unmet need: a support group for early stage/young onset Alzheimer's disease and related dementias. W. V. Med. J. 107:3 (2011), 66–68.
22. [22] Richardson, A., Pedley, G., Akhtar, F., Pelone, F., Chang, J., Muleya, W., Greenwood, N., Psychosocial interventions for people with young onset dementia and their carers: a systematic review. Int. Psychogeriatr. 13 (2016), 1–14, 10.1017/ S1041610216000132.
23. [23] von Kutzleben, M., Schmid, W., Halek, M., Holle, B., Bartholomeyczik, S., Community-dwelling persons with dementia: what do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia. Aging Ment. Health 16:3 (2012), 378–390, 10.1080/13607863.2011.614594.
24. [24] Noblit, G.W., Hare, R.D., Meta-Ethnography: Synthesizing Qualitative Studies. 1988, Sage, Newbury Park.
25. [25] Campbell, R., Pound, P., Morgan, M., Daker-White, G., Britten, N., Pill, R., Yardley, L., Pope, C., Donovan, J., Evaluating meta-ethnography: systematic analysis and synthesis of qualitative research. Health Technol. Assess., 15(43), 2011, 10.3310/hta15430.
26. [26] Pound, P., Britten, N., Morgan, M., Yardley, L., Pope, C., Daker-White, G., Campbell, R., Resisting medicines: a synthesis of qualitative studies of medicine taking. Soc. Sci. Med. 61:1 (2005), 133–155, 10.1016/j.socscimed.2004.11.063.
27. [27] Dixon-Woods, M., Agarwal, S., Jones, D., Young, B., Sutton, A., Synthesising qualitative and quantitative evidence: a review of possible methods. J. Health Serv. Res. Policy 10:1 (2005), 45–53, 10.1258/1355819052801804.
28. [28] Greenwood, N., Mackenzie, A., Informal caring for stroke survivors: meta-ethnographic review of qualitative literature. Maturitas 66:3 (2010), 268–276, 10.1016/j.maturitas.2010.03.017.
29. [29] Centre for Reviews Dissemination (CRD). Systematic Reviews: CRD's Guidance for Undertaking Reviews in Health Care. 2009, CRD: University of York.
30. [30] Moher, D., Liberati, A., Tetzlaff, J., J, et al. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann. Intern. Med. 151:4 (2009), 264–269, 10.7326/0003-4819-151-4-200908180-00135.
31. [31] Greenwood, N., Mackenzie, A., Cloud, G.C., Wilson, N., Informal primary carers of stroke survivors living at home-challenges, satisfactions and coping: a systematic review of qualitative studies. Disabil. Rehabil. 31:5 (2009), 337–351, 10.1111/10.1080/09638280802051721.
32. [32] Harris, P.B., The perspective of younger people with dementia. Soc. Work Ment. Health 2:4 (2004), 17–36, 10.1300/j200v02n04_02.
33. [33] Griffin, J., Oyebode, J.R., Allen, J., Living with a diagnosis of behavioural-variant frontotemporal dementia: the person's experience. Dementia, 1–21, 2015, 10.1177/1471301214568164 Epub ahead of print.
34. [34] Rostad, D., Hellzén, O., Enmarker, I., The meaning of being young with dementia and living at home. Nurs. Rep., 3(1), 2013, e3, 10.4081/nursrep.2013.
35. [35] Carone, L., Tischler, V., Dening, T., Football and dementia: a qualitative investigation of a community based sports group for men with early onset dementia. Dementia, 1–19, 2014, 10.1177/1471301214560239 Epub ahead of print.
36. [36] Edvardsson, D., Fetherstonhaugh, D., Nay, R., Promoting a continuation of self and normality: person-centred care as described by people with dementia, their family members and aged care staff. J. Clin. Nurs. 19:17–18 (2009), 2611–2618, 10.1111/j.1365-27022009.03143.x.
37. [37] Kinney, J.M., Kart, C.S., Reddecliff, L., ‘That's me, the Goother’: Evaluation of a program for individuals with early-onset dementia. Dementia 10:3 (2011), 361–377, 10.1177/1471301211407806.
38. [38] Wawrziczny, E., Antoine, P., Ducharme, F., Kergoat, M.J., Pasquier, F., Couples’ experiences with early-onset dementia: an interpretative phenomenological analysis of dyadic dynamics. Dementia, 1–18, 2014, 10.1177/1471301214554720 Epub ahead of print.
39. [39] Morhardt, D., Weintraub, S., Khayum, B., Robinson, J., Medina, J., O'Hara, M., Mesulam, M., Rogalski, E.J., The CARE Pathway Model for Dementia: psychosocial and rehabilitative strategies for care in young-onset dementias. Psychiatr. Clin. North Am. 38:2 (2015), 333–352, 10.1016/j.psc.2015.01.005.
40. [40] Smith R, R., Greenwood, N., The impact of volunteer mentoring schemes on carers of people with dementia and volunteer mentors: a systematic review. Am. J. Alzheimers Dis. Other Demen. 29:1 (2014), 8–17, 10.1177/1533317513505135.
41. [41] Charlesworth, G., Burnell, K., Beecham, J., Hoare, Z., Hoe, J., Wenborn, J., Knapp, M., Russel, I., Wood, R., Orrell, M., Peer support for family carers of people with dementia, alone or in combination with group reminiscence in a factorial design: study protocol for a randomised controlled trial. Trials, 12(205), 2011, 10.1186/1745-6215-12-205.