The experiences needs and outcomes for carers of people with dementia

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‘The journey through dementia involves considerable changes and challenges, and each family’s journey is unique, for them as a whole and for each person within that family.’ 6
Executive Summary RSAS is people living with dementia and developing new and innovative ways of supporting carers, their families. The charity aims to enhance the health and well-being of carers through providing services that increase their knowledge and understanding of dementia, further enhances their caring skills and provides supportive and therapeutic services to them. This literature review provides an up-to-date review concerning the evidence in relation to the following questions: 1 What is the experience of caregiving for a person living with dementia, and in what context does caregiving take place? 2 What implications does caregiving have for the person/family member involved in caregiving and the person with dementia? 3 What is currently known about the factors that protect or increase the risk of poor outcomes in caregiving? 4 What evidence is there for interventions to support family caregiving and reduce the risk of poor outcomes and how is this delivered in relation to: a Information and Education b Multi-component, psycho-educational interventions c Psychological Interventions d Peer support and other social interventions e Assistive technology and new media 5 What form of service provision is required to support family caregivers? This will include consideration of such issues as: a How might a service be delivered? b What factors will influence delivery including location, design, accessibility and flexibility? 6 Who will the service be for and how can family caregivers be supported to engage with the service? A summary of the results of this review is presented below. The experience of living with dementia and caring for a person with dementia Current estimates suggest that around 850,000 people live with dementia in the UK, and 700,000 friends and family are caring for a person with dementia (Alzheimer’s Research UK, 2015). It is widely recognised that family members provide the majority of support for people with dementia living at home, and frequently continue to support them following admission to a care home (Woods, et al. 2008; Knapp & Prince, 2007; Luengo-Fernandez, et al. 2010). These family relationships are particularly important in enabling people living with dementia to experience wellbeing, maintain identity and self-esteem (Livingston, et al. 2008). The journey through dementia involves considerable changes and challenges, and each family’s journey is unique, for them as a whole and for each person within that family. The changes and challenges brought about by dementia involve both positive and negative experiences and require that family members engage in an on-going process of assimilation, adaptation and adjustment. It is therefore necessary to consider the impact upon relationships, as well as the individuals within those relationships. The impact upon relationships Much of the research has considered the impact upon marital relationships, and less commonly adult children and their parents or other relationship patterns. Consequently, it is important to view these findings with this in mind, as research considering the experience for the diverse range of relationships, including those influenced by ethnicity, sexual orientation, disability and divorce is much less in evidence. The findings concerning the impact upon relationships suggest that: • Previous and current relationship quality will influence the experience of dementia. Some evidence suggests that higher satisfaction occurs with caregiving where previous and current relationship quality is high. 7
Page 1 and 2: The experiences, needs and outcomes
Page 3 and 4: Foreword “This literature review
Page 5: Contents The impact of caregiving f
Page 9 and 10: Executive Summary • The impact of
Page 11 and 12: Executive Summary which it occurs,
Page 13 and 14: Executive Summary The factors that
Page 15 and 16: Executive Summary or computer based
Page 17 and 18: Executive Summary Who will the serv
Page 19 and 20: Full Report Introduction Current es
Page 21 and 22: Full Report Method Criteria for the
Page 23 and 24: Full Report an on-going process of
Page 25 and 26: Full Report because of the change i
Page 27 and 28: Full Report (Pöysti, et al. 2012;
Page 29 and 30: Full Report that they may require a
Page 31 and 32: Full Report The impact of caregivin
Page 33 and 34: Full Report adopted an ‘agreeing
Page 35 and 36: Full Report • families’ lack of
Page 37 and 38: Full Report What implications does
Page 39 and 40: Full Report As Zarit, et al. (2010)
Page 41 and 42: Full Report (Quinn, et al. 2012). T
Page 43 and 44: Full Report Family Support A number
Page 45 and 46: Full Report to understand. Dementia
Page 47 and 48: Full Report assessment. They carrie
Page 49 and 50: Full Report Multicomponent Interven
Page 51 and 52: Full Report didn’t widened over t
Page 53 and 54: Full Report • Carers feel they ha
Page 55 and 56: Full Report burden, difficulties an
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Full Report developed in The Nether
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Full Report Randomized controlled t
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Full Report There is no evidence of
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Full Report giving and concluded th
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Full Report • 56% of points of co
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Full Report DEM-DISC. The primary o
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Full Report of the forum in the per
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Full Report • The use of the DPD
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Full Report principles include buil
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Full Report across communities and
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References Ablitt, A., Jones, G. V.
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References Beard, R.L., Fetterman,
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References Carling-Jenkins, R., Tor
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References Czaja, S. J., Gitlin, L.
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References Elliott, A.F., Burgio, L
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References Gitlin, L. N., Winter, L
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References Janicki, M. P., Zendell,
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References Knapp, M., & Prince, M.,
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References Mackenzie, J., (2007). E
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References Melunsky, N., Crellin,N.
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References Norton, M.C., Smith K.R.
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References Prince, M., Bryce, R. &
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References Seabrooke, V., & Milne,
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References Tremont, G., (2011) Fami
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References Wohland, P., Rees, P., N
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The experiences needs and outcomes for carers of people with dementia

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