Dementia diagnosis – what happens next?

A man walks into a doctor’s surgery. The doctor says, “Sir, you have Alzheimer’s disease. Come back to see me again in a year.”

A bad joke? No. The beginning of a particularly poor screenplay? No. What happens to some people who get diagnosed with dementia? Yes.

A scenario where people are ‘left to get on with it’ once they’ve been diagnosed with dementia was an issue raised this week in a new campaign from the Alzheimer’s Society. The campaign – called Right to Know – argues that people should be supported fully upon receiving a dementia diagnosis, and the Society notes that “getting a dementia diagnosis on its own is not enough. There are a huge range of emotions that people with dementia and their families feel once diagnosed.” Further, it observes that “many people feel not only upset, but confused about the condition, potential treatments and available support.” It concludes that “everyone diagnosed with dementia should have access to a dementia adviser (or equivalent) to help them come to terms with their new condition. They will be able to answer simple questions about dementia and signpost to services available locally.”

Five years ago, our report Dementia: ethical issues highlighted the same concerns as the Alzheimer’s Society’s new campaign. We observed that there was ample evidence to support the fact that, in many cases, people are presented with a diagnosis of dementia and simply told to come back in a year’s time. When we wrote our report, we felt that such an approach was morally wrong, a conclusion that was supported by people we talked to who had personal experience of dementia.

We also argued strongly that people with dementia should be seen as equal citizens, with the same interests as everyone else, in ensuring their ongoing well-being and maintaining their autonomy. To support these aims, and to give people a chance to retain their abilities, we felt that it was imperative that people with dementia are given reliable support as soon as they find out about their diagnosis. We noted that it would be unthinkable to expect a person with cancer to wait until their support needs had reached a crisis before providing any kind of support. Why is it different with dementia?

The importance of post-diagnostic support has also been highlighted by policy-makers. In a speech given in September 2013, Alistair Burns – the National Clinical Director for Dementia in England – highlighted “the ‘dip’ that takes place following a diagnosis where… support is not in place.” Professor Burns argued that key to providing this support is the availability of “information about dementia, the implications of the diagnosis and a list of available support and facilities.” The Department of Health’s own 2013 publication Dementia – a state of the nation report on dementia care and support in England observed that “once someone has received a diagnosis of dementia there will be a range of different types of support they and their families will need… everyone will need support, advice and help to understand what it means to have dementia, what they can do to live as well as possible with the condition and to enable them to plan for the future.”

Aims such as these, however, do not seem to be supported by what actually happens in England after people are diagnosed with dementia. This is borne out by poll results published recently by the Alzheimer’s Society, which found that 90 per cent of people felt unsupported after their diagnosis.

North of the English-Scottish border, the outlook for those diagnosed with dementia is a little brighter, and the approach to support more uniform; since April 2013, the Scottish Government has guaranteed a year’s post-diagnostic support for everyone diagnosed with dementia from that date. This encapsulates a five pillar model of post-diagnostic support set out by Alzheimer Scotland that is comprised of planning for future decision-making; supporting community connections; peer support; planning for future care; and understanding the illness and managing symptoms.

In England, examples of good practice for post-diagnostic support are also readily identifiable. Professor Burns’ speech, for example, highlighted the work of the Hardy Group in Derbyshire to support people with early onset dementia via a peer support group (although Professor Burns also observed that “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.”). Other examples of good practice include Mersey Care NHS Trust’s eight-week post-diagnostic support course, led by a clinical psychologist, nurses and occupational therapists, for people with dementia and their carers to assist with coping, adjustment and planning. Manchester Mental Health and Social Care Trust also offer a post-diagnostic support group which meets once a week for six weeks “for anybody who has dementia and their carer/relative friend who wants to learn more about their condition and better ways of coping with it.”

However, when set against the results of the Alzheimer’s Society poll, it seems that there is good reason to fear that these examples are the exception rather than the norm. As the state of the nation report noted, “the availability of diagnostic processes, treatment, care and support varies significantly across the country. Indeed, many people said they felt nothing happened after a diagnosis. This shows more immediate support and information is needed.”

The fact that post-diagnostic support remains a talking (shouting) point among stakeholder groups underlines the fact that there is still a lot of work to be done in overcoming the idea that people with dementia should receive their diagnosis and simply ‘get on with it’.