Managing behavioural and psychological symptoms in community dwelling older people with dementia: 2. A systematic review of qualitative studies

Dementia

Volumn 18, Issue 7-8, 2019, Pages 2950-2970

  Braun, Andreas ^a   Trivedi, Daksha P ^a   Dickinson, Angela ^a   Hamilton, Laura ^a   Goodman, Claire ^a   Gage, Heather ^b   Ashaye, Kunle ^c   Iliffe, Steve ^d   Manthorpe, Jill ^e  

^a UNIVERSITY OF HERTFORDSHIRE   (United Kingdom)

^b UNIVERSITY OF SURREY   (United Kingdom)

^c HERTFORDSHIRE PARTNERSHIP UNIVERSITY NHS FOUNDATION TRUST   (United Kingdom)

^d UNIVERSITY COLLEGE LONDON   (United Kingdom)

^e KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

behavioural and psychological symptoms; carers; challenging behaviour; community; dementia; qualitative; systematic review

Indexed keywords

CAREGIVER; DEMENTIA; DISEASE MANAGEMENT; HUMAN; INDEPENDENT LIVING; PSYCHOLOGY; VERY ELDERLY;

AGED, 80 AND OVER; CAREGIVERS; DEMENTIA; DISEASE MANAGEMENT; HUMANS; INDEPENDENT LIVING;

EID: 85044365854     PISSN: 14713012     EISSN: 17412684     Source Type: Journal    
DOI: 10.1177/1471301218762856     Document Type: Article

References (84)

1. Bradshaw S. A., Playford E. D., Riazi A., (2012). Living well in care homes: A systematic review of qualitative studies. Age Ageing, 41(4), 429–440.
2. Bunn F., Goodman C., Sworn K., Rait G., Brayne C., Robinson L., … Iliffe S., (2012). Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: A systematic review of qualitative studies. PLoS Medicine, 9(10),
3. Campbell R., Pound P., Pope C., Britten N., Pill R., Morgan M., Donovan J., (2003). Evaluating meta-ethnography: A synthesis of qualitative research on lay experiences of diabetes and diabetes care. Social Science & Medicine, 56(4), 671–684.
4. Cerejeira J., Lagarto L., Mukaetova-Ladinska E. B., (2012). Behavioral and psychological symptoms of dementia. Frontiers in Neurology, 3, 73.
5. de Boer M. E., Hertogh C. M., Droes R. M., Riphagen I. I., Jonker C., Eefsting J. A., (2007). Suffering from dementia – The patient's perspective: A review of the literature. International Psychogeriatrics, 19(6), 1021–1039.
6. Department of Health. (2009). Living well with dementia: A national dementia strategy (pp. 1–102). Leeds, UK: Department of Health. Retrieved from https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/168220/dh_094051.pdf
7. Dixon-Woods M., Fitzpatrick R., (2001). Qualitative research in systematic reviews. Has established a place for itself. British Medical Journal, 323(7316), 765–766.
8. Goodman C., Evans C., Wilcock J., Froggatt K., Drennan V., Sampson E., … Iliffe S., (2010). End of life care for community dwelling older people with dementia: An integrated review. International Journal of Geriatric Psychiatry, 25, 329–337.
9. Greenhalgh T., Peacock R., (2005). Effectiveness and efficiency of search methods in systematic reviews of complex evidence: Audit of primary sources. British Medical Journal, 331, 1064–1065.
10. Greenwood N., Smith R., (2016). The experiences of people with young-onset dementia: A meta-ethnographic review of the qualitative literature. Maturitas, 92, 102–109.
11. Hasseler M., (2007). Qualitative methods: Systematic reviews in qualitative health-care research as a basis for evidence-based practice. Gesundheitswesen, 69(5), 297–302.
12. Iliffe S., Kharicha K., Harari D., Swift C., Goodman C., Manthorpe J., (2010). User involvement in the development of a health promotion technology for older people: Findings from the SWISH project. Health & Social Care in the Community, 18, 147–159.
13. Kales H. C., Gitlin L. N., Lyketsos C. G., (2015). Assessment and management of behavioral and psychological symptoms of dementia. British Medical Journal, 350, h369.
14. Moriarty J., Manthorpe J., Wilcock J., Iliffe S., (2007). Consulting with stakeholders: Using the expertise of researchers, professionals, carers and older people in systematic reviews. Dementia, 6, 449–452.
15. Nyman S. N., Mc Parland P., Innes A., (2015). Memory Advisory Service Evaluation Summary. Retrieved from http://blogs.bournemouth.ac.uk/dementia-institute/files/2015/10/MAS-lay-summary.pdf
16. Popay J., (2016). Moving beyond effectiveness in evidence synthesis: Methodological issues in the synthesis of diverse sources of evidence. London: NICE. Retrieved from http://www.nice.org.uk/niceMedia/docs/Moving_beyond_effectiveness_in_evidence_synthesis2.pdf
17. PRISMA. (2016). Transparent reporting of systematic reviews and meta-analyses. Retrieved from http://prisma-statement.org/
18. Robinson L., Hutchings D., Corner L., Beyer F., Dickinson H., Vanoli A., … Bond J., (2006). A systematic literature review of the effectiveness of non-pharmacological interventions to prevent wandering in dementia and evaluation of the ethical implications and acceptability of their use. Health Technology Assessment, 10(26), iii, ix108.
19. Savva G. M., Zaccai J., Matthews F. E., Davidson J. E., McKeith I., Brayne C., (2009). Prevalence, correlates and course of behavioural and psychological symptoms of dementia in the population. British Journal of Psychiatry, 194(3), 212–219.
20. Spencer L. R. J., Lewis J., & Dillon L., (2003). Quality in qualitative evaluation: A framework for assessing research evidence – A quality framework. London: National Centre for Social Research.
21. Steeman E., de Casterle B. D., Godderis J., Grypdonck M., (2006). Living with early-stage dementia: A review of qualitative studies. Journal of Advanced Nursing, 54(6), 722–738.
22. Sung H. C., Chang A. M., (2005). Use of preferred music to decrease agitated behaviours in older people with dementia: A review of the literature. Journal of Clinical Nursing, 14(9), 1133–1140.
23. Thomas J., Harden A., (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 8, 45–45.
24. Trivedi, D., Goodman, C., Dickinson, A., Gage, H., McLaughlin, J., Manthorpe, J., Ashaye, K., & Iliffe S. (2013). A protocol for a systematic review of research on managing behavioural and psychological symptoms in dementia for community-dwelling older people: evidence mapping and syntheses. Sys Rev, 2, 70, DOI: 10.1186/2046-4053-2-70
25. Trivedi D., Braun A., Dickinson A., Gage H., Hamilon L., Goodman C., Ashaye, K., Iliffe, S., Manthorpe J., (2018). Managing behavioural and psychological symptoms in community dwelling older people with dementia: 1. A systematic review of the effectiveness of interventions. Dementia (London), Epub ahead of print 2018. DOI: 10.1177/1471301218762851
26. Tyrrell M., Hilleras P., Skovdahl K., Fossum B., Religa D., (2017). Voices of spouses living with partners with neuropsychiatric symptoms related to dementia. Dementia (London), Epub ahead of print 2017. DOI: 10.1177/1471301217693867.
27. Au A., Shardlow M., Teng Y., Tsien T., Chan C., (2013). Coping strategies and social support-seeking behaviour among Chinese caring for older people with dementia. Ageing & Society, 33(8), 1422–1441.
28. Benbow S. M., & Kingston P., (2016). Talking about my experiences … at times disturbing yet positive: Producing narratives with people living with dementia. Dementia (London), 15(5), 1034–1052.
29. Bruce D. G., Paterson A., (2000). Barriers to community support for the dementia carer: A qualitative study. International Journal of Geriatric Psychiatry, 15(5), 451–457.
30. Camic M., Williams C. M., Meeten F., (2013). Does a 'Singing Together Group' improve the quality of life of people with a dementia and their carers? A pilot evaluation study. Dementia: The International Journal of Social Research and Practice, 12(2), 157–176.
31. Capus J., (2005). The Kingston Dementia Cafe: The benefits of establishing an Alzheimer cafe for carers and people with dementia. Dementia: The International Journal of Social Research and Practice. 4(4), 588–591.
32. Chan W. C., Ng C., Mok C. C., Wong F. L., Pang S. L., Chiu H. F., (2010). Lived experience of caregivers of persons with dementia in Hong Kong: A qualitative study. East Asian Arch Psychiatry, 20(4), 163–168.
33. Colling K. B., (2004). Caregiver interventions for passive behaviors in dementia: Links to the NDB model. Aging & Mental Health, 8(2), 117–125.
34. de la Cuesta-Benjumea C., (2010). The legitimacy of rest: Conditions for the relief of burden in advanced dementia care-giving. Journal of Advanced Nursing, 66(5), 988–998.
35. Ducharme F., Kergoat M. J., Antoine P., Pasquier F., Coulombe R., (2013). The unique experience of spouses in early-onset dementia. American Journal of Alzheimer's Disease and Other Dementias, 28(6), 634–641.
36. Egdell V., (2012). Development of support networks in informal dementia care: Guided, organic, and chance routes through support. Canadian Journal on Aging, 31(4), 445–456.
37. Farran C. J., Loukissa D., Perraud S., Paun O., (2003). Alzheimer's disease caregiving information and skills. Part I: Care recipient issues and concerns. Research in Nursing & Health, 26(5), 366–375.
38. Farran C. J., Loukissa D., Perraud S., Paun O., (2004). Alzheimer's disease caregiving information and skills. Part II: Family caregiver issues and concerns. Research in Nursing & Health, 27(1), 40–51.
39. Forbes D. A., Finkelstein S., Blake C. M., Gibson M., Morgan D. G., Markle-Reid M., … Thiessen E., (2012). Knowledge exchange throughout the dementia care journey by Canadian rural community-based health care practitioners, persons with dementia, and their care partners: An interpretive descriptive study. Rural and Remote Health, 12(4), 2201.
40. Gibson R. H., Gander P. H., Jones L. M., (2014). Understanding the sleep problems of people with dementia and their family caregivers. Dementia (London), 13(3), 350–365.
41. Gorska S., Forsyth K., Irvine L., Maciver D., Prior S., Whitehead J., … Reid J., (2013). Service-related needs of older people with dementia: Perspectives of service users and their unpaid carers. International Psychogeriatrics, 25(7), 1107–1114.
42. Hamill M., Smith L., Rohricht F., (2012). Dancing down memory lane': Circle dancing as a psychotherapeutic intervention in dementia – A pilot study. Dementia: The International Journal of Social Research and Practice, 11(6), 709–724.
43. Ivey S. L., Laditka S. B., Price A. E., Tseng W., Beard R. L., Liu R., … Logsdon R. G., (2013). Experiences and concerns of family caregivers providing support to people with dementia: A cross-cultural perspective. Dementia (London), 12(6), 806–820.
44. Landmark T., Aasgaard H. S., Fagerström L., (2013). “To be stuck in it – I can’t just leave”: A qualitative study of relatives’ experiences of dementia suffers living at home and need for support. Home Health Care Management & Practice, 25(5), 217–224.
45. Lindqvist E., Nygard L., Borell L., (2013). Significant junctures on the way towards becoming a user of assistive technology in Alzheimer's disease. Scandinavian Journal of Occupational Therapy, 20(5), 386–396.
46. McCabe L., Innes A., (2013). Supporting safe walking for people with dementia: User participation in the development of new technology. Gerontechnology, 12(1), 4–15.
47. McDermott O., Orrell M., & Ridder H. M., (2014). The importance of music for people with dementia: the perspectives of people with dementia, family carers, staff and music therapists. Aging & Mental Health, 18(6), 706–716.
48. McHugh J. E., Wherton J. P., Prendergast D. K., Lawlor B. A., (2012). Identifying opportunities for supporting caregivers of persons with dementia through information and communication technology. Gerontechnology, 10(4), 220–230.
49. MacPherson S., Bird M., Anderson K., Davis T., Blair A., (2009). An art gallery access programme for people with dementia: 'you do it for the moment'. Aging Ment Health, 13(5), 744–752.
50. Mahoney D. F., La Rose S., & Mahoney E. L., (2015). Family caregivers' perspectives on dementia-related dressing difficulties at home: The preservation of self model. Dementia (London), 14(4), 494–512.
51. Malthouse R., Fox F., (2014). Exploring experiences of physical activity among people with Alzheimer's disease and their spouse carers: a qualitative study. Physiotherapy, 100(2), 169–175.
52. Marshall A., Bucks R., Mander H., (2005). A long-term support group for people with dementia. Journal of Dementia Care, 13(5), 36–38.
53. Martin S., Augusto J. C., McCullagh P., Carswell W., Zheng H., Wang H., … Mulvenna M., (2013). Participatory research to design a novel telehealth system to support the night-time needs of people with dementia: Nocturnal. International Journal of Environmental Research and Public Health, 10(12), 6764–6782.
54. Meiland F. J., Droes R. M., de Lange J., Vernooij-Dassen M. J., (2005). Facilitators and barriers in the implementation of the meeting centres model for people with dementia and their carers. Health Policy, 71(2), 243–253.
55. Meiland F. J., Hattink B. J., Overmars-Marx T., de Boer M. E., Jedlitschka A., Ebben P. W., … Droes R. M., (2014). Participation of end users in the design of assistive technology for people with mild to severe cognitive problems; the European Rosetta project. International Psychogeriatrics, 26(5), 769–779.
56. Melunsky N., Crellin N., Dudzinski E., Orrell M., Wenborn J., Poland F., … Charlesworth G., (2015). The experience of family carers attending a joint reminiscence group with people with dementia: A thematic analysis. Dementia (London), 14(6), 842–59.
57. Meyer J., Mc Cullough J., Berggren I., (2016). A phenomenological study of living with a partner affected with dementia. British Journal of Community Nursing, 21(1), 24–30. DOI: 10.12968/bjcn.2016.21.1.24.
58. Milne A., Guss R., & Russ A., (2014). Psycho-educational support for relatives of people with a recent diagnosis of mild to moderate dementia: an evaluation of a ‘Course for Carers'. Dementia (London), 13(6), 768–787.
59. Moore K., Ozanne E., Ames D., Dow B., (2013). How do family carers respond to behavioral and psychological symptoms of dementia? International Psychogeriatrics, 25(5), 743–753.
60. Mushi D., Rongai A., Paddick S. M., Dotchin C., Mtuya C., Walker R., (2014). Social representation and practices related to dementia in Hai District of Tanzania. BMC Public Health, 14(1), 260.
61. Nichols K. R., Fam D., Cook C., Pearce M., Elliot G., Baago S., Rockwood K., Chow T. W., (2013). When dementia is in the house: Needs assessment survey for young caregivers. The Canadian Journal of Neurological Sciences Le Journal Canadien Des Sciences, 40(1), 21–28.
62. Osman S. E., Tischler V., & Schneider J., (2016). ‘Singing for the Brain': A qualitative study exploring the health and well-being benefits of singing for people with dementia and their carers. Dementia (London), 15(6), 1326–1339.
63. Oyebode J. R., Bradley P., Allen J. L., (2013). Relatives' experiences of frontal-variant frontotemporal dementia. Qualitative Health Research, 23(2), 156–166.
64. Paton J., Johnston K., Katona C., Livingston G., (2004). What causes problems in Alzheimer's disease: Attributions by caregivers. A qualitative study. International Journal of Geriatric Psychiatry, 19(6), 527–532.
65. Perraud S., Farran C. J., Loukissa D., Paun O., (2004). Alzheimer's disease caregiving information and skills, part III: Group process issues and concerns. Research in Nursing & Health, 27(2), 110–120.
66. Phillipson L., Jones S. C., (2012). Use of day centers for respite by help-seeking caregivers of individuals with dementia. Journal of Gerontological Nursing, 38(4), 24–34. Quiz 36–27.
67. Powell J., Gunn L., Lowe P., Sheehan B., Griffiths F., Clarke A., (2010). New networked technologies and carers of people with dementia: An interview study. Ageing & Society, 30(6), 1073–1088.
68. Quinn C., Clare L., Woods R. T., (2015). Balancing needs: The role of motivations, meanings and relationship dynamics in the experience of informal caregivers of people with dementia. Dementia (London), 14(2), 220–237.
69. Robinson A., (2012). Seeking respite: Issues around the use of day respite care for the carers of people with dementia. Ageing & Society, 32(2), 196–218.
70. Salfi J., Ploeg J., Black M. E., (2005). Seeking to understand telephone support for dementia caregivers. Western Journal of Nursing Research, 27(6), 701–721.
71. Samia L. W., Hepburn K., Nichols L., (2012). “Flying by the seat of our pants”: What dementia family caregivers want in an advanced caregiver training program. Research in Nursing & Health, 35(6), 598–609.
72. Scott A., Lewis D., Loughlin N., (2005). Dementia and challenging behaviour: The needs of family caregivers. Nursing Older People, 17(1), 26–31.
73. Shaji K. S., Smitha K., Lal K. P., Prince M. J., (2003). Caregivers of people with Alzheimer's disease: A qualitative study from the Indian 10/66 Dementia Research Network. International Journal of Geriatric Psychiatry, 18(1), 1–6.
74. Soderhamn U., Landmark B., Eriksen S., Soderhamn O., (2013). Participation in physical and social activities among home-dwelling persons with dementia – Experiences of next of kin. Psychology Research and Behavior Management, 6, 29–36.
75. Sorensen L. V., Waldorff F. B., Waldemar G., (2008). Early counselling and support for patients with mild Alzheimer's disease and their caregivers: A qualitative study on outcome. Aging Ment Health, 12(4), 444–450.
76. Stokes L. A., Combes H., Stokes G., (2014). Understanding the dementia diagnosis: The impact on the caregiving experience. Dementia (London), 13(1), 59–78.
77. Sun F., (2014). Caregiving stress and coping: A thematic analysis of Chinese family caregivers of persons with dementia. Dementia (London), 13(6), 803–818.
78. Toot S., Hoe J., Ledgerd R., Burnell K., Devine M., Orrell M., (2013). Causes of crises and appropriate interventions: The views of people with dementia, carers and healthcare professionals. Aging & Mental Health, 17(3), 328–335.
79. Vaingankar J. A., Subramaniam M., Picco L., Eng G. K., Shafie S., Sambasivam R., … Chong S. A., (2013). Perceived unmet needs of informal caregivers of people with dementia in Singapore. International Psychogeriatrics, 25(10), 1605–1619.
80. Vernooij-Dassen M., Joling K., van Hout H., Mittelman M. S., (2010). The process of family-centered counseling for caregivers of persons with dementia: Barriers, facilitators and benefits. International Psychogeriatrics, 22(5), 769–777.
81. Wang J., Xiao L. D., He G. P. D., & Bellis A., (2014). Family caregiver challenges in dementia care in a country with undeveloped dementia services. Journal of Advanced Nursing, 70(6), 1369–1380.
82. White E. B., Montgomery P., (2014). Electronic tracking for people with dementia: An exploratory study of the ethical issues experienced by carers in making decisions about usage. Dementia (London), 13(2), 216–232.
83. White E. B., Montgomery P., McShane R., (2010). Electronic tracking for people with dementia who get lost outside the home: A study of the experience of familial carers. The British Journal of Occupational Therapy, 73(4), 152–159.
84. Xiao L. D., De Bellis A., Habel L., Kyriazopoulos H., (2013). The experiences of culturally and linguistically diverse family caregivers in utilising dementia services in Australia. BMC Health Services Research, 13, 427.