Dementia Declaration has potential for step change in care

There is a much greater appreciation today of the importance of support for people with dementia and their carers after a diagnosis has been made.

Good quality post-diagnostic care helps the individual with dementia to stay at home, when it is in their best interests to do so, which enables them to remain independent for longer.

We have been very successful in improving dementia diagnosis rates for dementia over the last year.  However, this is of limited value if the correct support mechanisms are not in place following the diagnosis. Too often in the past we have heard of people feeling abandoned after they have been given a diagnosis, with little information or support being made available.  The situation is still patchy throughout England on what services are offered, and this needs to change.

In February 2014 the Secretary of State set out his ambition that everyone diagnosed with dementia should be offered high quality support after receiving their diagnosis.  Ensuring effective post-diagnostic support for people with dementia was subsequently one of the key foundations of the Prime Minister’s Challenge on Dementia 2020, which noted that while excellent care and support is provided in some parts of the country, the challenge now is to reduce unwarranted variation and provide meaningful care.

Given this background, a number of key stakeholders involved in different aspects of dementia care have come together to develop a joint declaration, setting out what they believe good quality post-diagnostic dementia care should look like. Key signatories to the declaration include the Department of Health, NHS England, the Local Government Association, Public Health England, Health Education England, the Association of Directors of Adult Social Services and the Royal College of GPs.

They all share a recognition of the need for a clear and detailed definition of what good care and support should look like for people with dementia and their families, recognising the huge potential to deliver a step change by improving quality and reducing variation in what is currently provided.

The Declaration sets out the signatories’ shared commitment to ensure:

  • the views of people living with the effects of dementia and their families and carers are taken fully into account when determining the nature of post-diagnostic services offered, with high quality personalised care provided in line with individual needs and preferences;
  • access to holistic, integrated and effective post-diagnostic support is available for all, which takes into account age, ethnicity, diagnosis and co-morbidities;
  • the health, physical and emotional needs of families and carers are fully recognised, and their views are taken into account, especially at times of change. They are supported by receiving appropriate information and training on caring for someone with dementia and given access to appropriate support to meet their needs;
  • people living with the effects of dementia, their families and carers, as well as health, social care and third sector professionals, are aware of what local services are available and how to access them, to enable people to live and die as well as possible with dementia;
  • appropriate evidence is available across health and social care on best practice in post-diagnostic care, what best meets people’s needs and what initiatives are cost-effective;
  • all professionals in health, social care and the third sector who support people with dementia have appropriate information, knowledge and understanding of the condition and what constitutes good quality post-diagnostic care services;
  • appropriate dialogue takes place on making the best use of resources to ensure that services are available. Partners across government, health, social care, the third sector and all other relevant agencies cooperate and collaborate to improve outcomes for people with dementia;
  • health and social care services are coordinated and fully integrated to meet the post-diagnostic needs of people with dementia and their families and carers, and
  • people living with the effects of dementia and their families and carers are made aware of and given the opportunity to participate in relevant research.

The full Declaration is on website.

See also – Health Secretary unveils plans for safer 7 day dementia service

Professor Alistair Burns

Alistair Burns is Professor of Old Age Psychiatry at The University of Manchester and an Honorary Consultant Old Age Psychiatrist in the Greater Manchester Mental Health NHS Foundation Trust. He is the National Clinical Director for Dementia and Older People’s Mental Health at NHS England and NHS Improvement.

He graduated in medicine from Glasgow University in 1980, training in psychiatry at the Maudsley Hospital and Institute of Psychiatry in London. He became the Foundation Chair of Old Age Psychiatry in The University of Manchester in 1992, where he has variously been Head of the Division of Psychiatry and a Vice Dean in the Faculty of Medical and Human Sciences, with responsibility for liaison within the NHS. He set up the Memory Clinic in Manchester and helped establish the old age liaison psychiatry service at Wythenshawe Hospital. He is a Past President of the International Psychogeriatric Association.

He was Editor of the International Journal of Geriatric Psychiatry for twenty years, (retiring in 2017) and is on the Editorial Boards of the British Journal of Psychiatry and International Psychogeriatrics. His research and clinical interests are in mental health problems of older people, particularly dementia and Alzheimer’s disease. He has published over 300 papers and 25 books.

He was made an honorary fellow of the Royal College of Psychiatrists in 2016, received the lifetime achievement award from their old age Faculty in 2015 and was awarded the CBE in 2016 for contributions to health and social care, in particular dementia.

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  1. Black and Ethnic MinorityDiabetes Association (BEMDA) says:

    Please send us more information about Dementia and how this affects black and minority ethnic population in the UK.
    Thank you for your time.

    Mrs. Aderonke Kuti
    Executive Director, BEMDA Charity

  2. Anthony newton says:

    Can you explain what you mean by HOLISTIC service available to dementia carers