Post diagnostic support in dementia

Alistair Burns, NHS England’s National Clinical Director for Dementia, gives his views on support for people with dementia and their carers.

Being diagnosed with dementia is the start of a life changing journey, and that’s why it’s so important that we reach our ambition of increasing correctly diagnosing dementia in more people, and putting in place the support they need.

And today NHS England is launching a new Dementia Toolkit aimed at helping GPs make the early diagnosis of this crippling condition and, importantly, what they can do in terms of that vital post-diagnostic support.

Of course, the word “support” potentially covers a lot of things and can be directed primarily toward the person who has the diagnosis or their carer – paid or unpaid, formal or informal.

The distinction can also be made by people about what is emotional support or practical task-based help. It has also been used to describe specific interventions such as cognitive stimulation therapy. In fact, some people have said to me that we need to find a better term for support, which may be too general.

The emphasis on support for carers is rooted in the fact that caring for a person is recognised to be one of the most stressful things around and underscores that a diagnosis in and of itself, must be backed up with something. It is essential that the support be provided bespoke to the individual and tailored to their needs.

People talk of the “dip” that takes place following a diagnosis where that support is not in place. So, what can and should we be doing to support people post diagnosis? Key to this is the information which is available. That should be information about dementia, the implications of the diagnosis and a list of available support and facilities.

A great initiative I saw recently in Derbyshire was that the local library produced a booklet – in collaboration with the Sherwood Forest Hospitals – detailing books available for people with dementia, ranging from the classics such as Dancing with Dementia by Christine Bryden, John Suchet’s “My Bonnie” to the delightfully named “Knickers in the Fridge” by Jane Grierson.

That type of readily identifiable and accessible information is so important and in my view underscores the reach that dementia has and is now achieving. I think it is fair to reflect that, just a few years ago, it would have been far less likely that such an initiative would have been created – a real indicator of the profile of dementia and the recognition of the need for support.

A superb example of a group which was a started is the Hardy Group in Derbyshire. Started by people with dementia, it emphasises the benefits of social interaction, mental activity maintaining community activity, including exercise and non-trivial physical activity.

Listening to Dave and Heather Roberts, founder members of the Group, the thing that struck me was that fun and engagement were cornerstones of the activity. There was such an active programme of events that I applied to join myself – and was reassured my application would be sympathetically considered! It is supported by Making Space and is a powerful example of what can be done to support people with dementia.

One of the points made by the organisers was that because it is self-funding it is immune from any variations in financial support that may occur.

Another great example is dementia adventure which promotes physical activity.

The Dementia Guide has just been published by the Alzheimer’s Society with support from the Department of Health and the Royal Colleges of Psychiatrists and General Practitioners along with the Association of Directors of Adult Social Services. The aspiration is that every person diagnosed as having dementia should be provided with the information contained in it.

The main message is that you can live well with dementia after a diagnosis. It combines a wealth of information about dementia including the signs and symptoms and what help should be available. It obviously cannot replace locally sourced advice but will act as a stimulus for further information being sought.

Of course, the important thing is to consider how the information can be used. I have heard a plea from some people to say that simply giving information is not enough and the key to improvement is how that information can be used to best benefit. I think it is important to bear this in mind when it is being collated and disseminated.

It would be good to hear your views on post diagnostic support and if anyone can come up with a better term, please let me know at and/or on Twitter @ABurns1907.

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.