Involving people with dementia

Alzheimer's Society position statement

People with 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.

Personalised, high quality care requires understanding and addressing the needs of the people who use the health and social care system. Actively involving people with dementia and carers in designing, developing and monitoring services will help to ensure they deliver what people need.

People with dementia are substantial users of the health and social care system. Yet, standards of care and services for people with dementia are very often of poor quality. This is unacceptable. Involving people with dementia to understand what they need and want from health and social care services is crucial to changing this situation.

People with dementia - a critical group to involve

The number of people with dementia in the United Kingdom is growing and will hit one million in less than twenty years time. People with dementia must be involved in developing the health and social care system now 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 with dementia.

There is 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 helping to develop the health and social care system. The position statement 'Making decisions' discusses the need to involve people with dementia in decisions about their own care and treatment.

It is now increasingly recognised that having a diagnosis of dementia does not mean that a person is unable to share their perspective and have a say in the health and social care system. Access to the direct experiences of people with dementia is ever more possible due to earlier diagnosis and the availability of drug treatments.

People with 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 with dementia and that national policy reflected their concerns. Many of the opportunties to improve life with dementia in the National Dementia Strategy are ones that people with 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.

The impairment in capacity and communication brought by dementia means that a person with dementia has unique needs and will at times require extra support to participate meaningfully in involvement work. 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.

Carers and family members can also provide a valuable perspective in involvement work and must be included. It is important to recognise that the perspectives of carers are different from those of people with dementia, but both are valid and important. Carers are in a unique position through knowing the person with dementia prior to their dementia and having an understanding of how that person might perceive the services provided. They are often able to articulate views that their relatives may not be able to do on their own behalf. In addition, carers are often users of care and health services in their own right.

How people can be involved in health and social care

The health and social care system necessarily incorporates a broad range of activities. These include planning and designing services, delivering services, 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:

Taking part in planning and decision-making about services.
Participating in consultations on new health and social care policies.
Giving feedback on services they use.
Initiating and/or taking part in research.
Training staff in how best to provide services.
Being included on governance boards and working groups of health and social care organisations.

Involving people in designing, delivering, managing and monitoring the health and social care system ensures people can shape and influence the health and social care services they use. It is an integral part of putting the person who uses services at the heart of the system.

The Society is pleased to note some good practice in involving people in the health and social care system:

The Care Quality Commission's Experts by Experience scheme: the Care Quality Commission is responsible for ensuring that care services maintain high standards of quality. The Experts by Experience scheme actively involves people who have experience in using services to assist with monitoring and judging the quality of services. For example, an Expert by Experience might attend a residential care service inspection to provide their insight as to whether it is delivering good care to the people living there.
Local Involvement Networks (LINkS): the Department of Health established LINkS to assist communities to have a stronger local voice and a greater ability to change local health and social care services. A LINk is made up of individuals and local groups in a community who work together to find out what people in that community think about their local health and social care services and what they would like to change. LINkS can carry out spot checks of services, make recommendations for improvement and influence decisions about local services.
National Audit Office patient stories: the National Audit Office website has recordings of people talking about their experiences of stroke. The recordings support the National Audit Office's work on improving stroke care. The aim of these recordings is to personalise stroke services, helping providers to think about the person at the end of their services and to be more creative in making sure their services of the highest quality.

Duties to involve people

Important policy initiatives strongly commit the Government to ensuring people are at the heart of health and social care and user involvement is a cornerstone of policy in this area. Nearly all current policy documents talk about the need to involve people in all aspects of service provision. From April 2009 local authorities have been under a statutory duty to inform, consult and involve local people in the running of local services. NHS bodies in England are already under a recently strengthened duty to involve patients in decisions affecting the provision and operation of health services.

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 wellbeing of the local population. The Department of Health guidelines for Joint Strategic Needs Assessments 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 Primary Care Trusts 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 work on involving people with dementia

People with dementia have become increasingly involved in the work of Alzheimer's Society since 2000. Through a national programme called 'Living with Dementia', people with dementia have been sharing their experiences and knowledge, and raising awareness of dementia at local and national levels. This contribution is crucial to ensure that Alzheimer's Society develops appropriate information and support for people with dementia. It ensures that people with dementia can influence the work that the Society carries out on their behalf.

People with dementia are also strongly involved in the Society's research work. Our Quality Reasearch in Dementia (QRD) Consumer Network is a team of over 170 carers, former carers and people with dementia. They work with leading scientists to set our research agenda, award grants and assess outcomes. This unique involvement ensures Alzheimer's Society funds research that stands to have the biggest impact on people's lives.

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.' It is not enough to merely include people, for example by inviting just one person who uses services to a meeting or sending a consultation document to people who use services without providing the support and information they may require to respond. People must be actively engaged, and on a regular basis.

It is important that services respond to peoples' views and insights about services. People need to be kept informed on how a service is developing. They need to know how their comments are being used to shape change, and if their suggestions are not followed, then why. Involvement must be seen as part of a relationship and treated as an ongoing dialogue, and not a one-off conversation.

A service is only good quality if it addresses the needs of the people who use it. Involvement is crucial to providing quality services - in order to understand what people using the service need, they must be actively engaged its development and delivery. The service must respond to their needs and preferences.

The Society campaigns for:

People with 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 with dementia. People with dementia must be enabled to offer their opinions and share their experiences.
The people who have a responsibility to involve people with dementia should make use of resources and tools for involving people with dementia.

Further information:
Social Care Institute for Excellence (2006) Practice guide: the participation of adult service users, including older people, in developing social care. Social Care Institute for Excellence, London
http://www.scie.org.uk

Dementia North (2005), Listen to us: involving people with dementia in planning and developing services - guide produced as part of Department of Health funded development project 'Involving people with dementia' in 4 case study sites in NE England

Understanding and respsecting the person with dementia - Alzheimer's Society advice sheet
http://www.alzheimers.org.uk/factsheet/524