Involving people with dementia

1. Summary

People affected by dementia are the experts on what it is like to live with dementia.  Their expertise must inform the health and social care services that they use, the development of research that improves diagnosis, treatment and care, as well as the services and amenities that are in their local community.  Their experiences must also inform the work of Alzheimer's Society.  Alzheimer's Society believes that people affected by dementia should be involved in decisions about their care and should be able to influence decisions which can affect their lives.  The position statement refers to people affected by dementia as people with dementia, carers, family and supportive friends.

2. Background

There are 800,000 people living with dementia in the UK today and dementia costs the UK economy £23 billion a year (Alzheimer's Society, 2007, updated to reflect 2012 figures).  People with dementia are major users of health and care services, so they must be involved in developing the health and social care system to ensure it addresses the needs of this substantial, and growing, group of service users.

As communities, public services, businesses and organisations strive to become dementia friendly, it is more important than ever that people affected by dementia are involved in influencing decisions which affect their lives.  People with dementia must be involved in creating local dementia-friendly communities as they know best how to improve local services for people with dementia.

In terms of health and social care, people affected by dementia say that they want choice and control over their lives, yet, in a survey in 2013, 35% of respondents with dementia said that they do not have a choice about their day to day life (Alzheimer's Society, 2013).  As people with dementia are substantial users of the health and social care system, involving them to understand what they need and want from health and social care services is crucial to improving quality of care.  Personalised, high quality care requires understanding and addressing the needs of the people who use the health and social care system.  Actively involving people affected by dementia in designing, developing and monitoring services will help to ensure they deliver what people need.

Organisations, such as Health and Wellbeing Boards and Healthwatch, responsible for designing, delivering and monitoring the health and social care system must actively engage people affected by dementia.  However, people affected by dementia must also be involved in decisions about their local communities, particularly where these have a direct impact on their lives.  Alzheimer's Society believes that, where they want to be, people affected by dementia should be involved, and in particular it is important to listen to and act on the views of people from groups and communities who are not routinely considered, such as black, Asian and minority ethnic people, lesbian, gay, bisexual or transgender people or people with disabilities.

There is still considerable stigma around dementia and a widespread mistaken belief that a person with dementia cannot be involved in decisions or give their opinions.  In the past this has been a barrier to people with dementia making choices about their day-to-day life.  Alzheimer's Society works to combat this stigma and believes that other organisations should be proactive in encouraging everyday choices for people with dementia.

People affected by dementia must also be involved in the work of Alzheimer's Society by having opportunities to influence the direction of the Society – this should include opportunities to develop services and campaign strategies.  The level of involvement will depend on each individual's preferences.

3. Duties to involve people

New structures were introduced to the NHS in England in April 2013.  The NHS Constitution (Department of Health, 2013a) states that patients and the public have the right to be involved, directly or through representatives, in the planning of healthcare services commissioned by NHS bodies.  It also stipulates that patients and the public have the right to be involved in discussions and decisions about their health and care, including end of life care, and to be given information to be enabled to do this. Where appropriate this right includes family and carers.  Alzheimer's Society supports these rights of patients and wants to see them embedded into practice across the NHS.

The emphasis is now on decisions being made at a local level so services reflect the needs of the local population.  Joint Strategic Needs Assessments are particularly important processes in health and social care.  They analyse the needs of a community and ensure that the appropriate services are in place to promote the well-being of the local population.  The Department of Health guidelines for Joint Strategic Needs Assessments (Department of Health, 2013b) require the involvement of people in the community who will use the services planned. If local services are to be responsive, high quality and cost effective, it is vital that Local Authorities and Clinical Commissioning Groups carry out Joint Strategic Needs Assessments in partnership with people who need, use and have experience of health and social care services.  Alzheimer's Society believes this is a fundamental part of planning services in a local area.

4. How people can be involved in health and social care

With the focus on local decision-making, it is increasingly important for people affected by dementia to be involved in the planning and commissioning of services, as well as monitoring how well a service works and researching how a service may operate in the future.  People who use services can and should be involved in all of these activities so that their concerns and ideas are heard and used to improve the system.  Ways people can be involved in health and social care include:

  • Giving positive or negative feedback on the care they received or services they use;
  • Volunteering for the local Healthwatch;
  • Attending a public meeting with local Healthwatch;
  • Writing to a local councillor representative on the relevant Health and Wellbeing Board;
  • Joining a local patient group;
  • Providing feedback to Strategic Clinical Networks;
  • Participating in consultations on new health and social care policies;
  • Initiating and/or taking part in research;
  • Training staff in how best to provide services.

Involving people is an integral part of putting the person who uses services at the heart of the system. It is important that organisations look to different methods to ensure that people affected by dementia are involved, for example:

  • Proactively seek engagement with patients on all parts of service;
  • Communicate effectively and in a way appropriate to them, bearing in mind and working to combat difficulties which their condition may present;
  • Endeavour to work with a broad range of patients, including those in the later stages and from harder to reach groups;
  • Act on the feedback from patients to make changes.

The Society hopes that under the new structures of the NHS many people with dementia will have opportunities to be involved, but it is still early days as the new structures only came into force in April 2013.

5. People with dementia's involvement in developing public policy

People affected by dementia have been involved in developing national policy, such as sitting on the working groups that developed the National Dementia Strategy for England and the NICE/SCIE dementia clinical guideline. Their input meant that influential decision-makers heard the voices of people affected by dementia and that national policy reflected their concerns.  Many of the opportunities to improve life with dementia in the National Dementia Strategy are ones that people affected by dementia said they need or have found helpful.  These include increasing opportunities for peer support and greater provision of information for people and their families.  Alzheimer's Society believes that this involvement is fundamental to developing meaningful policies for people with dementia.

6. People with dementia may need extra support to be involved

The nature of dementia means that a person living with the condition may have difficulties with communicating or with processing information.  Each person with dementia will have unique needs and some may require extra support to be meaningfully involved.  The process must be carefully designed to take account of people's individual needs, for example by providing extra time in meetings to allow people to express their views, using techniques such as Talking Mats, visiting people with dementia in their own familiar environments.  Alzheimer's Society believes in involving people at all stages of dementia.

Carers and family members can also provide a valuable perspective in involvement work and must be included.  However, it is important to recognise that the perspectives of carers are different from those of people with dementia, and both are valid and important.  Carers are often users of care and health services in their own right and will have their own needs and views in terms of the development dementia-friendly communities.

7. How people with dementia influence the work of Alzheimer's Society

The active involvement of people with dementia in Alzheimer's Society work brings a wide range of benefits:

  • Developing services that best meet the needs of people with dementia;
    Maintaining quality of our services and highlighting priorities for developing and improving our services
  • by;
  • Gathering essential information and guidance to inform our fund raising and campaigning programmes;
  • Educating, inspiring and challenging public perceptions of dementia, as well as influencing key decision-makers in government and other organisations;
  • Ensuring that our research funding is prioritised towards areas where it is needed the most and that research outcomes are improved.

Alzheimer's Society believes that its work should always informed by the needs and experiences of people affected by dementia.  We seek to actively engage people affected by dementia in influencing all aspects of the Society's work.  We do this in many ways, from asking people for feedback on our services to influencing the future direction of the Society.  There is more information about the ways to be involved on our website.

The Public Policy team at Alzheimer's Society gains the opinions of people affected by dementia through surveys, focus groups and individual interviews.  These views are then used to inform reports and consultation responses which can influence decision-makers and change policies.  Alzheimer's Society believes that it is very important that parliamentarians and organisations with an interest in dementia know how people with dementia really feel about living with the condition.

Alzheimer's Society also believes that people with dementia play a vital role in the development of dementia-friendly communities.  More information on this is available on Alzheimer's Society website.

People with dementia must also play a crucial role in the development of research which improves diagnosis, treatment and care.  Details of how to be involved in the Alzheimer's Society research programme are online.

8. Involvement should be an ongoing dialogue

People and organisations with responsibilities to involve people must take care that their involvement work is not merely tokenistic.  Alzheimer's Society believes that it is not enough to merely include people, for example by inviting just one person who uses services to a meeting.  People must be actively engaged, and on a regular basis.  Alzheimer's Society believes it is important that the person with dementia is clear about what they are expected to do and how long it will take.  It is also important that a person with dementia has the right support to enable them to be involved.

After a person has been involved, it is important to keep them updated with how their input has made a difference.  For example, if a person has given feedback on a service, it is important that they are kept informed on how the service is developing.  Involvement must be seen as part of a relationship and treated as an ongoing dialogue, and not a one-off conversation.

9. Alzheimer's Society campaigns for

  • People affected by dementia to be involved in the health and social care system to ensure it is able to address the needs of this substantial, and growing, group of service users.
  • Organisations responsible for designing, delivering and monitoring the health and social care system must actively engage people affected by dementia.  People affected by dementia must be enabled to offer their opinions and share their experiences.
  • Healthwatch England and other health consumer champions in Wales and Northern Ireland should publish clear plans to ensure the involvement of people affected by dementia.
  • Organisations must be proactive in involving people affected by dementia in their work and make use of resources and tools to do this.

10. References and further information

Alzheimer's Society advice sheet, Understanding and respecting the person with dementia

Alzheimer's Society web page, Sharing your experience

Alzheimer's Society (2013), Guidance and criteria for the recognition process for dementia-friendly communities

Department of Health (2005) Listen to us: Involving people with dementia in planning and developing services

Department of Health (2013a), The NHS Constitution for England

Department of Health (2013b), Statutory Guidance on Joint Strategic Needs Assessments and Joint Health and Wellbeing Strategies

Joseph Rowntree Foundation (2012) A Stronger collective voice for people with dementia

NHS England (2013) The NHS belongs to us all

Social Care Institute for Excellence (2006) Practice guide: the participation of adult service users, including older people, in developing social care

Last updated: October 2013 by Laura Cook

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