Dementia is a progressive, terminal brain disease currently affecting an estimated 800,000 people in the UK, a number that is expected to reach one million by 2021. Dementia causes a decline in memory, reasoning, communication skills and the ability to carry out daily activities.
Around twenty-one million people in the UK have a close friend or family member with dementia. Dementia has suffered historically from poor awareness and understanding, combined with the stigma attached to both mental illness and old age. Indeed, people fear dementia more than any other disease with 39 percent of over 55s fearing Alzheimer’s the most, compared to 25 percent who worry most about cancer. A lack of understanding and concern over access to support is a key reason for this fear.
Caring for people with dementia has a considerable impact on public and private finances with current, NHS and social care spending on dementia, across the UK, at least £15 billion. Furthermore, around two-thirds of people with dementia are cared for in the community by an estimated 670,000 unpaid carers, saving the state £8 billion per year. Most of the direct costs, however, are spent on responding to crises, often involving institutional care, rather than providing proactive and effective management and support for people with dementia and their carers.
In response to critical reports in 2007, from the National Audit Office and Alzheimer’s Society, the Department of Health launched its first ever national strategy for dementia in February 2009. Living well with dementia: a national dementia strategy for England[i] (the Strategy), focussed on three broad themes - improving awareness and understanding, timely diagnosis, and living well with dementia. Following the 2010 election, the Strategy was adopted by the incoming government, who affirmed the need for its implementation and in March 2012, the Prime Minister went a step further in publishing his personal Dementia Challenge report, which highlighted key areas which he wanted to see addressed[ii].
Despite increased publicity for early diagnosis and year-on-year improvements in diagnosis rates, doctors still avoid diagnosing dementia because they feel that “nothing can be done” to help people who have been diagnosed. Yet diagnosis is not an end in itself, but a gateway to making informed personal life choices. It should also be the lever that promotes access to treatments. However, despite explicit government policy that every person with dementia has the right to be diagnosed and offered relevant information and help regardless of the severity of their condition, in England, only 48 per cent of people have a formal diagnosis and many of these lack access to effective support.
Over the last few years, a number of approaches to post-diagnostic support have emerged, but to date, there has been limited evaluation of their effectiveness. One approach identified in our report Better Care for frail older people, developed by the Guideposts Trust (Guideposts) is the Guideposts Dementia Information Prescription (DIP). Launched in 2012, it is the culmination of over eight years’ experience in providing support and advice to people with dementia and their carers and is designed to be used by doctors and other health and social care professionals to provide local information on the support services available in their local area. It is also available directly to carers and people living with dementia and is backed up by a local Helpline.
There was a great deal of anecdotal evidence that people with dementia and their carers found the DIP to be really helpful and that more people would benefit if it was more widely available. Given the importance of this issue, the Centre for Health Solutions developed an independent survey questionnaire to evaluate the usability, reusability and effectiveness of the DIP as a support tool. Conducted during January 2014, the survey was completed by 33 health and social care staff and 47 service users (people with dementia and their carers). In addition 1,000 people who had accessed and downloaded a Guidepost Trust’s Hints and Tips document were sent a separate survey to ascertain whether they would have found the DIP helpful. Some 115 people completed this second survey. A report on this evaluation is available on the Centre’s website.
Overall there was overwhelmingly positive support for the DIP as an effective post-diagnostic support tool with 87 per cent of care providers (including GPs) considering it either very good or excellent. The DIP was seen as user-friendly with approximately 76 per cent of carers using it to find information on local healthcare support and 91 percent of people with dementia and their carers likely or extremely likely to use the DIP again.
While this is only one of a number of support tools available, it demonstrates the importance of evaluation in order to promote the scaling up of adoption of such tools. More importantly, from reading each survey response, it confirms is the sheer demand for post diagnostic information, how much it is needed and valued, particularly the ease of access for up-to-date information customised to each locality. Given the political and provider consensus that post-diagnostic support is critical to the effective management and care of people with dementia and their carers, what is now needed, is agreement on how to provide that support. This evaluation suggests that the DIP is an effective way of delivering such support.