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2014 Conference Presentation

Dementia United Kingdom

2 September 2014

Loneliness, frustration and joy: the complexities of caring for someone with dementia

Jo Moriarty, King's College London, United Kingdom
Jill Manthorpe, King's College London, United Kingdom
Michelle Cornes, King's College London, United Kingdom


Improving support for people with dementia and their carers has become an important part of the UK Coalition government’s long term care policy, as evidenced by the Prime Minister’s Challenge on Dementia and the importance given to hosting the G8 Dementia Summit in December 2013. The Care Act 2014 is intended to improve choice and quality of care for people with dementia and their carers and the government has expressed its intention to improve dementia screening and diagnosis rates.

However, these developments are taking place at a time when there has been a real terms decrease in social care expenditure and when proportionally fewer people are receiving social care support than in the past. This paper uses results from a National Institute for Health Research School for Social Care Research funded study looking at social care practice with carers to explore some of the policy implications of social care support for carers of people with dementia.

Data and methods: The data used in this presentation are based on a subset of interviews and surveys collected as part of a wider mixed methods study which collected survey data from carers’ leads or their equivalents in local councils and face to face interviews with carers’ leads, commissioners, carers, and carers’ support workers.

Results: Consistent with existing research, the data showed that carers of people with dementia faced a number of challenges in caring for a person with dementia. They valued breaks from caring and opportunities to discuss their situation with a worker who understood their situation. A number of different types of support had been set in place, such as carers’ groups, information and education interventions, and direct payments for carers to spend in meeting their own needs. However, access to all these was very variable.

Policy implications: The paper will ask if social care support for carers of people with dementia fully acknowledges their ongoing needs for emotional support and is sensitive enough to the changing situations that carers of people with dementia find themselves in. Support for carers is crucial if the dementia challenge is to be met and the paper asks how we can achieve more evidence based support for carers.

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