Introduction

There are 700,000 people with dementia living in the UK and as the population ages, this number will rise to over one million by 2025. One in three people over 65 will die with dementia.

People over the age of 55 fear dementia more than any other condition, including cancer. Yet public awareness about dementia, its symptoms, the importance of getting a diagnosis and the help available for those with the condition is very limited. An Alzheimer’s Society survey has shown that half of all UK adults believe dementia remains a condition plagued by stigma.

Following the publication of the National Dementia Strategy for England (and with similar plans expected in Wales and Northern Ireland), Alzheimer’s Society believes it is now vital to tackle the poor levels of public awareness and understanding and to radically reduce the stigma associated with dementia through wide-ranging and sustained public awareness-raising campaigns. There is a mistaken view that raising awareness will result in an overwhelming demand for dementia services. Alzheimer’s Society believes that, on the contrary, it is vital to raise awareness of dementia so that people access to support at the appropriate time, resulting in earlier intervention and more efficient use of services.

This report summarises the current evidence about the level of public awareness of dementia in the UK through a review of qualitative and quantitative surveys conducted over the last ten years. It aims to inform the development of national and local campaigns to challenge the misunderstanding and stigma surrounding dementia. Although this report will certainly be helpful to commissioners in England considering how to meet the requirement to improve public awareness in the National Dementia Strategy, it should also be helpful to many others throughout the UK.

What is dementia?

The term ‘dementia’ is used to describe a collection of symptoms, including a decline in memory, reasoning and communication skills, and a gradual loss of skills needed to carry out daily activities. These symptoms are caused by changes in the brain as a result of physical diseases such as Alzheimer’s disease. Dementia can affect people of any age but is most common in older people. One in six people over 80 and one in 14 people over 65 has a form of dementia.

Many factors, including age, genetic background, medical history and lifestyle, can combine to lead to the onset of dementia. The main risk factor for most forms of dementia is advanced age, with prevalence roughly doubling every five years over the age of 65.

The way each person experiences dementia will depend on many factors, including the type of dementia they have, their emotional resilience and the support that is available to them. However, dementia is a progressive condition, and the symptoms become more severe over time. Understanding this progression is vital to help someone with dementia anticipate and plan for change throughout their journey with dementia.

Policy context

The National Audit Office estimates that only a third of people with dementia currently receive a diagnosis – meaning that more than half remain undiagnosed.

In recent years more attention has been paid to dementia and the importance of early diagnosis and support. The 2009/10 Operating Framework for the NHS in England identified dementia as a priority for local healthcare providers, and states that ‘The National Dementia Strategy will be a comprehensive framework aimed at driving up standards of health and social care services to improve the quality of life and quality of care for people with dementia and their carers. PCTs will want with local authorities to consider how they could improve dementia services.’

A number of other policy documents and reports have highlighted the need for an early diagnosis, but also for greater awareness of dementia among the public and more detailed information for people with dementia and their carers about how to manage the condition.8 These developments have all begun to shape dementia services, and have led to calls for more understanding of the levels of public awareness of, and attitudes towards dementia.

The need for increased awareness and understanding of dementia has also been recognised in the 2009 National Dementia Strategy for England. Objective 1 of the strategy is for a public information campaign to improve public understanding about dementia, emphasise the importance of early diagnosis and challenge discrimination.

The importance of raising awareness

‘Parallels can be drawn between dementia now and cancer in the 1950s, when there were few treatments and patients were commonly not told the diagnosis for fear of distress.’

Stigma and misunderstanding can have a devastating impact on all stages of a person’s journey through dementia. From preventing early intervention to discrimination in the workplace or lack of access to services, stigma prevents people with dementia from living well with their condition.

Improving public awareness of dementia would improve quality of life for people with dementia and their families by putting them in a stronger, informed position to seek a diagnosis, plan for the future, and make more appropriate use of health and social services throughout the course of their condition. Without tackling the issue of a low level of awareness about dementia, the stigma will continue to act as a barrier to people receiving the services they need.

Alzheimer’s Society has been raising awareness of dementia for 30 years but to date, there have been no wide-ranging, above the line and sustained public awareness-raising campaigns about dementia. Both national and local awareness-raising campaigns are vital to ensure investment in dementia services is not wasted. Without an understanding of the condition, its symptoms and the support available, we will continue to see an inefficient and ineffective approach to the delivery of services to people with dementia.

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