Behavioural and psychological symptoms in dementia and the challenges for family carers: Systematic review

British Journal of Psychiatry

Volumn 208, Issue 5, 2016, Pages 429-434

  Feast, Alexandra ^a   Orrell, Martin ^b,c   Charlesworth, Georgina ^a   Melunsky, Nina ^b   Poland, Fiona ^d   Moniz Cook, Esme ^e  

^a UNIVERSITY COLLEGE LONDON   (United Kingdom)

^b NORTH EAST LONDON NHS FOUNDATION TRUST   (United Kingdom)

^c UNIVERSITY OF NOTTINGHAM   (United Kingdom)

^d UNIVERSITY OF EAST ANGLIA   (United Kingdom)

^e UNIVERSITY OF HULL   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

BEHAVIOR DISORDER; CAREGIVER; DEMENTIA; HEALTH CARE QUALITY; HUMAN; MENTAL DISEASE; QUALITATIVE RESEARCH; QUANTITATIVE STUDY; REVIEW; SOCIAL NORM; SYSTEMATIC REVIEW; ATTITUDE TO HEALTH; FAMILY RELATION; NURSING; PATHOPHYSIOLOGY; PROBLEM BEHAVIOR; PSYCHOLOGY;

CAREGIVERS; DEMENTIA; FAMILY RELATIONS; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; PROBLEM BEHAVIOR;

EID: 84973532355     PISSN: 00071250     EISSN: 14721465     Source Type: Journal    
DOI: 10.1192/bjp.bp.114.153684     Document Type: Review

References (53)

1. Fauth EB, Gibbons A. Which behavioral and psychological symptoms of dementia are the most problematic? Variability by prevalence, intensity, distress ratings, and associations with carer depressive symptoms. Int J Geriatr Psychiatry 2014; 29: 263-71.
2. Hamel M, Gold DP, Andres D, Reis M, Dastoor D, Grauer H, et al. Predictors and consequences of aggressive behaviour by community based dementia patients. Gerontologist 1990; 30: 206-11.
3. De Vugt ME, Stevens F, Aalten P, Lousberg R, Jaspers N, Winkens I, et al. Do carer management strategies influence patient behaviour in dementia? Int J Geriatr Psychiatry 2004; 19: 85-92.
4. Peeters JM, Van Beek APA, Meerveld JHCM, Spreeuwenberg PMM, Francke AL. Informal carers of persons with dementia, their use and needs for specific professional support: a survey of the National Dementia Programme. BMC Nursing 2010; 9: 9.
5. Moniz-Cook E, Swift K, James I, Malouf R, de Vugt M, Verhey F. Functional analysis-based interventions for challenging behaviour in dementia. Cochrane Database Syst Rev 2012; 2: CD006929.
6. Noblit GW, Hare RD. Meta-Ethnography: Synthesizing Qualitative Studies. Sage, 1988.
7. Barley EA, Murray J, Waters P, Tylee A. Managing depression in primary care: a meta synthesis of qualitative and quantitative research from the UK to identify barriers and facilitators. BMC Fam Pract 2011; 47: 1-11.
8. Public Health Resource Unit. Critical Appraisal Skills Programme (CASP): Making Sense of Evidence. National CASP Collaboration for Qualitative Methodologies, 2006.
9. Downs S, Black N. The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions. J Epidemiol Community Health 1998; 52: 377-84.
10. Crellin NE, Orrell M, McDermott O, Charlesworth G. Self-efficacy and health-related quality of life in family carers of people with dementia: a systematic review. Aging Ment Health 2014; 8: 954-69.
11. Lawrence V, Fossey J, Ballard C, Moniz-Cook E, Murray J. Improving quality of life for people with dementia in care homes: making psychosocial interventions work. Br J Psychiatry 2012; 201: 344-51.
12. Allen J, Oyebode, JR, Allen J. Having a father with young onset dementia: the impact on well-being of young people. Dementia 2009; 8: 455-80.
13. Bakker C, de Vugt ME, Vernooij-Dassen M, van Vliet D, Verhey FRJ, Raymond TC, et al. Needs in early onset dementia: a qualitative case from the NeedYD study. Am J Alzheimers Dis Other Demen 2010; 25: 634-40.
14. Landis JR, Koch GG. The measurement of observer agreement for categorical data. Biometrics 1977; 33: 159-74.
15. Cummings JL, Mega M, Gray K, Rosenberg-Thompson S, Carusi DA, Gornbein J. The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology 1994; 44: 2308-14.
16. Allegri RF, Sarasola D, Serrano CM, Taragano FE, Arizaga RL, Butman J, et al. Neuropsychiatric symptoms as a predictor of carer burden in Alzheimer's disease. Neuropsychiat Dis Treat 2006; 2: 105-10.
17. Hurt C, Bhattacharyya S, Burns A, Camus V, Liperoti R, Marriott A, et al. Patient and carer perspectives of quality of life in dementia: an investigation of the relationship to behavioural and psychological symptoms in dementia. Dement Geriatr Cogn Disord 2008; 26: 138-46.
18. Nygaard HA. Strain on carers of demented elderly people living at home. Scand J Prim Health Care 1998; 6: 33-7.
19. Riello R, Geroldi C, Zanetti O, Frisoni GB. Carer's distress is associated with delusions in Alzheimer's patients. Behav Med 2002; 28: 92-8.
20. Rocca P, Leotta D, Liffredo C, Mingrone C, Sigaudo M, Capellero B, et al. Neuropsychiatric symptoms underlying carer stress and insight in Alzheimer's disease. Dement Geriatr Cogn Disord 2010; 30: 57-63.
21. Riedijk S, de Vugt, M, Duivenvoorden H, Niermeijer M, van Swieten J, Verhey F, et al. Carer burden, health-related quality of life and coping in dementia carers: a comparison of fronto-temporal dementia and Alzheimer's disease. Dement Geriatr Cogn Disord 2006; 22: 405-12.
22. Chappell NL, Penning M. Behavioural problems and distress among carers of people with dementia. Ageing Society 1996; 16: 57-73.
23. Gaugler JE, Wall MM, Kane RL, Menk JS, Sarsour K, Johnston JA, et al. Does carer burden mediate the effects of behavioral disturbances on nursing home admission? Am J Geriatr Psychiatry 2011; 19: 497-506.
24. Brækhus A, Oksengard AR, Engedal K, Laake K. Social and depressive stress suffered by spouses of patients with mild dementia. Scand J Prim Health Care 1998; 16: 242-6.
25. Rinaldi P, Spazzafumo L, Mastriforti R, Mattioli P, Marvardi M, Polidori MC, et al. Predictors of high level of burden and distress in carers of demented patients: results of an Italian multicenter study. Int J Geriatr Psychiatry 2005; 20: 168-74.
26. Siriopoulos G, Brown Y, Wright K. Caregivers of wives diagnosed with Alzheimer's disease: husbands' perspectives. Am J Alzheimers Dis Other Demen 1999; 14: 79-87.
27. De Vugt ME, Stevens F, Aalten P, Lousberg R, Jaspers N, Winkens I, et al. Behavioural disturbances in dementia patients and quality of the marital relationship. Int J Geriatr Psychiatry 2003; 18: 149-54.
28. De Vugt ME, Riedijk SR, Aalten P, Tibben A, van Swieten JC, Verhey FRJ. Impact of behavioural problems on spousal carers: a comparison between Alzheimer's disease and fronto-temporal dementia. Dement Geriatr Cogn Disord 2006; 22: 35-41.
29. Bruce DG, Paterson A. Barriers to community support for the dementia carer: a qualitative study. Int J Geriatr Psychiatry 2000; 15: 451-57.
30. Scott A, Lewis D, Loughlin N, Chambers M. Dementia and challenging behaviour: the needs of family carers. Nurs Older People 2005; 17: 26-31.
31. Hepburn K, Lewis ML, Narayan S, Tornatore JB, Lindstrom-Bremer K, Wexler-Schermnan C. Discourse-derived perspectives: differentiating among spouses' experiences of caregiving. Am J Alzheimers Dis Other Demen 2002; 17: 213-26.
32. Gitlin LN, Winter L, Dennis MP, Hodgson N, Hauck WW. Targeting and managing behavioral symptoms in individuals with dementia: a randomized trial of a nonpharmacological intervention. J Am Geriatr Soc 2010; 58: 1465-74.
33. Albinsson L, Strang P. Existential concerns of families of late-stage dementia patients: questions of freedom, choices, isolation, death, and meaning. J Palliat Med 2003; 6: 225-35.
34. Almberg B, Grafstrom M, Winblad B. Major strain and coping strategies as reported by family members who care for aged demented relatives. J Adv Nurs 1997; 26: 683-91.
35. Boughtwood DL, Adams J, Shanley C, Santalucia Y, Kyriazopoulos H. Experiences and perceptions of culturally and linguistically diverse family carers of people with dementia. Am J Alzheimers Dis Other Demen 2011; 26: 290-7.
36. Tan LL, Wong HB, Allen H. The impact of neuropsychiatric symptoms of dementia on distress in family and professional carers in Singapore. Int Psychogeriatr 2005; 17: 253-63.
37. Nagarantnam N, Lewis-Jones M, Scott D, Palazzi L. Behavioral and psychiatric manifestations in dementia patients in a community. Carer burden and outcome. Alzheimer Dis Assoc Disord 1998; 12: 330-4.
38. Lim YM, Son GR, Song JA, Beattie E. Factors affecting burden of family carers of community-dwelling ambulatory elders with dementia in Korea. Arch Psychiatr Nurs 2008; 22: 226-34.
39. Behuniak SM. The living dead? The construction of people with Alzheimer's disease as zombies. Ageing Society 2011; 31:70-92.
40. Diehl J, Mayer T, Kurz A, Forstl H. Features of frontotemporal dementia from the perspective of a special family support group. Nervenarzt 2003; 74: 445-9.
41. Browne CJ, Shlosberg E. Attachment theory, ageing and dementia: a review of the literature. Aging Ment Health 2006; 10: 134-42.
42. Ingebretsen R, Solem PE. Spouses of persons with dementia: attachment, loss, and coping. Nor Epidemiol 1998; 8: 149-56.
43. Gitlin LN, Rose K. Factors associated with carer readiness to use nonpharmacologic strategies to manage dementia-related behavioral symptoms. Int J Geriatr Psychiatry 2014; 29: 93-102.
44. Reamy AM, Kyungmin K, Zarit SH, Whitlach CJ. Values and preferences of individuals with dementia: perceptions of family carers over time. Gerontologist 2013; 53: 293-302.
45. Davis LL, Gilliss CL, Deshefy-Longhi T, Chestnutt DH, Molloy M. The nature and scope of stressful spousal caregiving relationships. J Fam Nurs 2011; 17: 224-40.
46. Dias A, Samuel R, Patel V, Prince M, Parameshwaran R, Krishnamoorthy ES. The impact associated with caring for a person with dementia: a report from the 10/66 Dementia Research Group's Indian network. Int J Geriatr Psychiatry 2004; 19: 182-4.
47. Braun M, Mura K, Peter-Wight M, Hornung R, Scholz U. Toward a better understanding of psychological well-being in dementia carers: the link between marital communication and depression. Fam Process 2010; 49: 185-203.
48. Liddle J, Smith-Conway ER, Baker R, Angwin AJ, Gallois C, Copland DA, et al. Memory and communication support strategies in dementia: effect of a training program for informal carers. Int Psychogeriatr 2012; 24: 1927-42.
49. Ablitt A, Gregory V, Muers J. Living with dementia: a systematic review of the influence of relationship factors. Aging Ment Health 2009; 13: 497-511.
50. Quinn C, Clare L, Woods RT. What predicts whether carers of people with dementia find meaning in their role? Int J Geriatr Psychiatry 2012; 27: 1195-202.
51. Logsdon RG, McCurry SM, Teri L. STAR-Caregivers: a community-based approach for teaching family caregivers to use behavioral strategies to reduce affective disturbances in persons with dementia. Alzheimer Care Q 2005; 6: 146-153.
52. Moniz-Cook E, Elston C, Gardiner E, Agar S, Silver M, Win T, et al. Can training community mental health nurses to support family carers reduce behavioural problems in dementia? An exploratory pragmatic randomised controlled trial. Int J Geriatr Psychiatry 2008; 23: 185-191.
53. Livingston G, Barber J, Rapaport P, Knapp M, Griffin M, King D, et al. Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of family carers of people with dementia: pragmatic randomised controlled trial. BMJ 2013; 347: f6276.