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2 - Supporting People Living with Dementia and their Carers

Published online by Cambridge University Press:  11 February 2023

Sarah McNicol
Affiliation:
Manchester Metropolitan University
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Summary

It strikes me that it's just the little things … . People ask, ‘What's the big, innovative thing I can do?’ But really, it's about communication strategies.

(Heather Cowie, National Project Manager, Dementia-Friendly Canada, in conversation with author)

Living with dementia has a major impact on people's lives – and the lives of those who care for them. This book focuses on ways in which libraries can support people to live well with dementia, but what does this actually mean? A wide range of factors can be thought of as contributing to a good life. Accord - ing to Age UK, these can be broadly grouped under the following headings: personal wellbeing, positive relationships and active daily lives (Jopling, 2017).

As well as being difficult to pin down, the notion of ‘living well’ is highly individual. The National Dementia Declaration for England has laid out seven quality outcomes, as described by people with dementia and their carers that indicate they are living well with dementia (DAA, 2010). These are:

  • 1 I have personal choice and control or influence over decisions about me.

  • 2 I know that services are designed around me and my needs.

  • 3 I have support that helps me live my life.

  • 4 I have the knowledge and know-how to get what I need.

  • 5 I live in an enabling and supportive environment where I feel valued and understood.

  • 6 I have a sense of belonging and of being a valued part of family, community and civic life.

  • 7 I know there is research going on which delivers a better life for me now and hope for the future.

However, in practice people with dementia often find it challenging to continue with activities they enjoyed previously. A survey by the UK Alzheimer's Society found that:

  • • 35% of people with dementia said that they only go out once a week or less, and 10% once a month or less

  • • people said that they had to give up activities such as getting out of the house (28%), shopping (23%), exercise (22%) and using transport (16%)

  • • 9% of people with dementia said they had had to stop doing all the things they used to do

  • • 63% of people with dementia did not want to try new things. (Green and Lakey, 2013)

These are worrying statistics.

Type
Chapter
Information
Supporting People to Live Well with Dementia
A Guide for Library Services
, pp. 21 - 40
Publisher: Facet
Print publication year: 2023

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