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About the research on supporting carers of people with dementia

This Highlight is based on five NIHR studies.

Livingston G, Barber J, Rapaport P, et al. START (STrAtegies for RelaTives) study: a pragmatic randomised controlled trial to determine the clinical effectiveness and cost-effectiveness of a manual-based coping strategy programme in promoting the mental health of carers of people with dementia. Health Technol Assess. 2014;18(61).

Management of Challenging Behaviour in dementia at home and in care homes [Esme Moniz-Cook Due to publish, end of 2016] RP-PG-0606-1067:

Published outputs featured in this Highlight:

Feast, Martin Orrell M, Charlesworth G, Melunsky N, Poland F and Moniz-Cook E (2016). Behavioural and Psychological Symptoms in Dementia (BPSD) and the challenges for family carers: a systematic review. British Journal of Psychiatry Mar 2016, http://dx.doi.org/10.1192/bjp.bp.114.153684

Feast, A., Orrell, M., Russell, I., Charlesworth, G., & Moniz‐Cook, E. (2016). The contribution of caregiver psychosocial factors to distress associated with behavioural and psychological symptoms in dementia. International journal of geriatric psychiatry Feb 2016http://onlinelibrary.wiley.com/doi/10.1002/gps.4447/abstract

Bunn F, Burn A-M, Goodman C, Robinson L, Rait G, Norton S, et al. Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem). Health Serv Deliv Res 2016;4(8) ) http://www.journalslibrary.nihr.ac.uk/hsdr/volume-4/issue-8#abstract

Iliffe S, Wilcock J, Drennan V, Goodman C, Griffin M, Knapp M, et al. Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM). Programme Grants Appl Res 2015;3(3)http://www.journalslibrary.nihr.ac.uk/pgfar/volume-3/issue-3

Featured in this Highlight:

EVIDEM-C: promoting continence and managing incontinence with people with dementia living at home [Lead, Drennan V]

EVIDEM-E: exercise as a therapy for behavioural and psychological symptoms of dementia – a randomised controlled trial of clinical effectiveness and cost-effectiveness [Lead, Warner J]

Support at Home - Interventions to Enhance Life in Dementia (SHIELD) [Martin Orrell]

Published outputs featured in this Highlight:

Ledgerd, R., Hoe, J., Hoare, Z., Devine, M., Toot, S., Challis, D. and Orrell, M., 2015. Identifying the causes, prevention and management of crises in dementia. An online survey of stakeholders. International journal of geriatric psychiatry.

Reilly S, Miranda-Castillo C, Malouf R, Hoe J, Toot S, Challis D, Orrell M. Case management approaches to home support for people with dementia. Cochrane Database of Systematic Reviews 2015, Issue 1. Art. No.: CD008345. DOI: 10.1002/14651858.CD008345.pub2.

Note that this programme included an evaluation of a carer support programme. When published, results can be accessed on the programme website https://www.ucl.ac.uk/shield 

How does this fit with current guidance?

The Carers Act, enacted in April 2015, places obligations on local authorities to assess the needs of carers for support and advice. Health professionals also have responsibilities to identify carers and their needs. These are set out in NICE quality standards for dementia in 2010. This states that carers should be offered an assessment of emotional, psychological and social needs. Where appropriate, they should be offered psychological therapy. Care plans should be tailored to individuals but support might include individual or group psychoeducation; peer support groups; further information and training.

Other relevant evidence

There is not very much high quality evidence relating to informal carers of people with dementia. This highlight has not systematically searched evidence relating to dementia carers. A helpful overview was provided recently on this topic (Centre for Reviews and Dissemination 2014). This highlight complements that review, focusing on a few NIHR studies published since 2014 which have thrown light on different aspects of dementia carers.

Recent systematic reviews in this area have found little reliable or relevant research. For instance, a 2014 Cochrane review on respite care found four trials (three from the US, one from Canada), but these were low quality with small studies, short follow-up periods and high risk of bias (Maayan 2014). This made the study findings inconclusive. Problems in the quality and reliability of available evidence has driven recent NIHR and other initiatives to fund new research. This includes a themed call across NIHR programmes on dementia research in 2011 and further activity. Current live NIHR research of particular relevance to dementia carers and addressing some of the uncertainties identified in this report include:

  • a five year programme to evaluate different forms of home support for people with dementia and their carers, including economic assessment http://www.nihr.ac.uk/funding/funded-research/funded-research.htm?postid=1261
  • research assessing strategies for family carers to manage sleep disturbance in people with dementia http://www.nets.nihr.ac.uk/projects/hta/1422006
  • a study on managing faecal incontinence of people with dementia http://www.nets.nihr.ac.uk/projects/hta/137501 ;
  • evidence on providing diabetes care for people with dementia http://www.nets.nihr.ac.uk/projects/hta/1313803 ;
  • a study of Admiral nurses, specialist nurses providing support for family carers of people with dementia http://www.nets.nihr.ac.uk/projects/hsdr/1415407.

This highlight features studies which address health problems of people with dementia (such as continence and comorbidity), as well as carer needs. These are often difficult to separate. There is a wider evidence base of treatments and services for people with dementia in the community. This highlight focuses on recent NIHR studies likely to be particularly relevant to family and informal carers.

Other references and resources

Ablitt,. A, Jones, G.,V, Muers, J. (2009). Living with dementia: a systematic review of the influence of relationship factors. Aging and Mental Health 13(4):497-511.

Alzheimer’s Society (2014). Dementia UK: Second Edition – Overview. [Prince M, Knapp M et al]. https://www.alzheimers.org.uk/dementiauk

Arksey H and Hirst M. (2005) Unpaid carers' access to and use of primary care services, Primary Health Care Research and Development, 6, 2, 101-16.

Centre for Reviews and Dissemination. Dementia carers. Effective information, support and services to meet their needs. University of York. Effectiveness Matters. 2014

Maayan N, Soares-Weiser K, Lee H. Respite care for people with dementia and their carers. Cochrane Database of Systematic Reviews 2014, Issue 1. Art. No.: CD004396. DOI: 10.1002/14651858.CD004396.pub3

Mahoney R, Regan C, Katona C, Livingston G. Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study. Am J Geriatr Psychiatry 2005;13:795–801.

NICE. Dementia Quality Standard (QS1). London: NICE, 2010

Schoenmakers B, Buntinx F and DeLepeleire J (2010). Supporting the dementia family caregiver: the effect of home care intervention on general well-being. Aging and Mental Health, 14(1), pp.44-56.

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