Statement 8: People with dementia have opportunities, with the involvement of their carers, to participate in and influence the design, planning, evaluation and delivery of services

Key messages

What does this mean for care providers?

People who have dementia are the experts in what it feels like to live life with the disease, and their experience and expertise should be valued and used to inform the development and improvement of care services. Really hearing these views and responding will create a more effective service, but participating in this way can also help people feel that they have a contribution to make and an important role despite their diagnosis.

Care providers, wherever they are based, should seek to involve people living with dementia in designing and planning the services, participating in consultations, providing feedback on the services they receive and contributing to staff training. Most providers will already undertake an annual survey, and care homes may have relatives and residents meetings, but genuine participation goes beyond this to the sort of activities outlined above.

It is important to start by determining what outcomes people want from the service and to then explore how well the current arrangements deliver these. Different methods will be needed for the various stages of dementia, and providers will need to think about what practical tools might help, and what sort of support is needed, particularly around communication. It can be useful to involve carers to aid communication, but this must not be as a substitute for the person’s own views and wishes.

Why is this important for carers?

People with dementia and their carers have a right to be involved in service development and improvement so that services can be tailored to meet their needs rather than the needs of providers. There are a number of ways in which people with dementia and their carers can be involved in consultation about services at both local and national level.

How can I support my relative who has dementia to be involved in this way?

Carers can play a crucial role in facilitating the involvement of a person with dementia in dementia care service design and evaluation. The person may need support with communicating their views – either in writing, completing surveys or at meetings.

If involved in a network, the person may well need support to prepare for, remember and get to meetings, and to keep up with the group’s activities. Carers of people with more advanced dementia may find it helpful to use a tool such as Talking Mats, a system of symbols that helps aid communication for people with dementia, as a way of being able to establish the views of their relative.

As a carer of a person with dementia, what sorts of networks and organisations should I and my relative link up with in order to become involved in this sort of way?

The Dementia Action Alliance (DAA) is a national alliance of organisations working to improve the quality of dementia care. The national DAA has hundreds of members, and is the hub for bringing together a growing number of local dementia action alliances for particular districts or regions. In turn, local dementia action alliances bring together a range of people and organisations with an interest in improving dementia care – and people with dementia and carers should feel welcome to participate in these alliances.

The DEEP network is another possibility – DEEP is a network of local groups around the UK for people with dementia who have come together to support one another and improve dementia services and support. The groups vary in lots of ways (size, aims, frequency of meetings), but are united by their commitment to campaign for better dementia care services.

At an international level, DASN International (Dementia Advocacy and Support International), an internet-based support network, brings together people with dementia and carers from all over the world DASNI encourages people to participate in their own care and treatment and to work with local dementia support organisations to campaign for better services.

The Alzheimer's Society is committed to involving people with dementia and carers extensively across its range of activities. It invites participation in its Campaigners' Network, which includes local groups taking action to improve services locally.

Healthwatch is the consumer champion for both health and social care – so this could be a general route into commenting on local service provision. As well as the national office of Healthwatch England, there are 192 local Healthwatch organisations across England (the full list is on their website).

Are there any networks specifically aimed at carers of people with dementia?

Talking Point, the Alzheimer's Society online forum, and Dementia Challengers are two other important sources of support and encouragement for carers who are working to improve dementia care.

The Carer's Call to Action is a declaration from the Dementia Action Alliance (DAA) made in November 2013 that (like the DAA's earlier calls to action) aims to harness action on a particular issue in dementia – in this case, support for carers. Carers can keep up with the work going on to support the Carer's Call to Action and participate in this too if they wish.

Key resources

Practical tips and information

The Dementia Engagement & Empowerment Project (DEEP) worked 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 of the project produced a film and report, which offers helpful ideas about how people with dementia can influence service development.

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  • Participating in dementia care planning is a film about Brian, who was diagnosed with dementia at the age of 70, and now, with his wife June, actively participates in planning dementia care services in Gloucestershire.

Further information

A stronger collective voice for people with dementia

This is the final report from the first phase of the Dementia Engagement and Empowerment Project (DEEP) which ran from 2011-2012 to bring together people with dementia who are trying to influence services and policies affecting the lives of people with dementia. DEEP is now in its second phase and is a joint project between the Mental Health Foundation, Innovations in Dementia, supported by the Alzheimer’s Society and funded by the Joseph Rowntree Foundation.

View the resource

Creating a local dementia action alliance: a guide to getting started

This 'how to' guide from the Dementia Action Alliance sets out the practical steps involved in launching a local dementia action alliance, covering topics such as publicity, funding, recruitment, meetings and links to further resources.

View the resource

Dementia Action Alliance

The Dementia Action Alliance has been working since its launch in 2010 to bring together as broad a spectrum of organisations as possible to transform the quality of life of people living with dementia in the UK and their carers. Members of the alliance sign up to a National Dementia Declaration (as at autumn 2013 over 700 had signed up). The Declaration sets out outcomes that the Alliance is campaigning for – including ensuring people with dementia have choice and control over decisions about their lives, to feeling a valued part of their community. Members must prepare Action Plans for how they are going to contribute to securing these better outcomes for people with dementia by 2014. A key sub-group of the DAA are local dementia action alliances (for example, Torbay Dementia Action Alliance) which are springing up across the UK to try to deliver the aspirations of the national DAA at a local level – and the DAA website includes a search function to identify your local DAA.

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Developing supportive design for people with dementia

The King's Fund's Enhancing the Healing Environment (EHE) programme ran from 2009 until 2012 – its aim to improve care environments for people with dementia, as part of better overall support for people with dementia. This final report of the programme shares the findings from the programme, and makes clear how the involvement of people with dementia and carers in these change processes has been integral to the improvement of services.

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Making involvement count

This resource pack commissioned by the South West Dementia Partnership was developed to help professionals in their efforts to involve, engage and consult with people with dementia and their carers. The pack covers topics such as 'Communication', 'About consultation', 'Developing groups' and 'Service evaluation and improvement'.

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Strengthening the involvement of people with dementia

This 2007 report from the Care Services Improvement Partnership explains how to facilitate active and meaningful involvement of people with dementia in the planning, delivery and evaluation of health and social care services. It includes sections on communication issues, the process involved, and organisational issues. The report builds on a series of involvement projects funded by the Department of Health over several years.

View the document

DEEP: People with dementia speak out

This seven-minute film explains the work of the Dementia Engagement and Empowerment Project (DEEP). DEEP has been working nationally since 2011 to bring together local groups of people with dementia who are trying to influence services and policies affecting the lives of people with dementia. DEEP is a joint project between the Mental Health Foundation, Innovations in Dementia, supported by the Alzheimer's Society and funded by the Joseph Rowntree Foundation.

Watch the film

Dementia Advocacy and Support Network International (DASNI)

The internet-based Dementia Advocacy and Support Network International (DASNI) launched in 2000 and since this time has been working to provide a forum for exchange of information, encourage peer support (such as local groups and internet links), advocate for services for people with dementia, and assist people to connect with their local dementia organisation. Approximately a third of members have dementia. DASNI members have made presentations at Alzheimer's Disease International conferences and speak and publish widely on dementia.

Visit the site

Tools

EHE assessment tools

The King's Fund's Enhancing the Healing Environment (EHE) programme ran from 2009 until 2012 – its aim to improve care environments for people with dementia, as part of better overall support for people with dementia. The EHE assessment tools – one for care homes, one for hospital wards and clinical areas, and a final one for areas in hospitals such as outpatients – are all free to download. Each contains seven overarching criteria and a set of questions to prompt discussions between clinical/care staff, estates colleagues, patients and carers. The King's Fund recommend that a lay person – ideally a carer of a person with dementia – participates in the assessment process.

View the resources

Local alliances

This web page within the Dementia Action Alliance website presents a listing of all the local dementia action alliances in England. It includes a search function where users can enter a geographical region or a sector (for example, finance) to find the relevant dementia action alliance.

Visit the site

Progress for providers: Checking your progress in delivering personalised support for people living with dementia

This self-assessment tool is aimed at care home managers who want to check their progress on delivering personalised support for people with dementia. The tool has 3 sections: 'The person', 'The family', and 'The staff and manager', also includes a template for an action plan – to be completed after the self-assessment. The full book (which includes an introduction, action plan and links to further resources as well as the tool) can be downloaded for free – or the tool can be downloaded separately.

View the resource

Talking Mats

Talking Mats is a communication tool developed by speech and language therapists at the University of Stirling, and based on extensive research. It enables people who have communication difficulties – including people with advanced dementia – to be better able to express their views and needs, using a simple system of symbols on mats. Talking Mats are now available in a digital format. All Talking Mats products are available to purchase via the Talking Mats social enterprise.

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