Dementia - involving people with dementia and their carers

This page brings together ideas and guidance specific to supporting the involvement and engagement of people with dementia and their carers in their care, their local communities, and the provision of services to support them.

You may also find it useful to look also at resources in Decision making and capacity, Person-centred care planning and Supporting carers.

These resources were last accessed on 17 January 2013. Some of them are in PDF format - see how to access pdf files.

Joseph Rowntree Foundation (2012) Creating a dementia-friendly York
The York Dementia Without Walls project looked into what is needed to make York a good place to live for people with dementia and their carers. An underlying premise of the project is that people with dementia have a contribution to make to society. The project involved talking to and observing people with dementia and their carers in a variety of settings and situations. A series of recommendations are made using the Four Cornerstones model: place; people; networks; resources.

Dementia Partnerships (2011) Making involvement count: involving people living with dementia
This is a resource pack devised by South West Dementia Partnership for the Involving People Living with Dementia Reference group which focuses on 'what works' when involving, engaging and consulting with people. The pack consists of 18 resource cards which have been written by people living with dementia, carers, volunteers, staff and the local HealthWatch. The cards offer top tips and general guidance when involving people with dementia under the following topics: background; general principles;communication; about consultation; developing groups; recruitment and training; service evaluation and improvement.

Mental Health Foundation: Dementia Engagement and Empowerment Project
The Project aimed to explore, support, promote and celebrate groups and projects led by or actively involving people with dementia across the UK that were influencing services and policies affecting the lives of people with dementia. The first phase finished in 2012 and the next three year phase has begun. This phase aims to help build the capacity of existing groups, support the emergence of new groups and help develop a network linking these groups together.

Mental Health Foundation (2012) Ripple on the Pond. DEEP: the engagement, involvement and empowerment of people with dementia in collective influencing
This forms the appendix of the report from the first phase of the DEEP project. The main aim of this review was to summarise the evidence available about the active engagement and involvement of people with dementia in services, campaigns and research. The review also aims to summarise some of the evidence available about user movements