Awareness and Misunderstanding

This review is based on an overview of qualitative and quantitative studies and polls about the stigma associated with dementia in the UK over the past ten years, sourced through a Pubmed search and a review of policy documents.

Several themes have emerged from the literature relating to the misunderstanding and lack of awareness of dementia amongst the public.

Getting older, Alzheimer’s disease and dementia

‘Old age creeping up…it’s not an illness, is it?’

25 million people in the UK know a family member, close friend, or someone else with dementia. However, there is a basic lack of understanding about the nature of the condition, and its scale: in one survey 30% of people believed there were fewer than 100,000 people with dementia in the UK.

How many people do you think have dementia in the UK?

While there is evidence of general awareness of Alzheimer’s disease, studies reveal that people do not know very much about dementia. There is a lack of understanding that it is caused by disease, and is not a natural part of getting older. Dementia is viewed by many as an inevitable deterioration as we age, and one that cannot be prevented or treated.

In addition, there is a lack of understanding about the difference between Alzheimer’s disease and dementia. For example, in one study, while 43% recognised memory loss as a sign of Alzheimer’s disease, only 20% of the same respondents believed it to be a symptom of dementia. Often people are unsure of the relationship between the two.

Furthermore, awareness of the less common forms of dementia, such as vascular dementia, Pick’s disease and dementia with Lewy bodies, are much lower than Alzheimer’s disease.

Risk factors for dementia

As a consequence of this lack of understanding, there is a lack of awareness about the causes of dementia. Nearly three-quarters (72%) of people in one study believe family history of dementia puts people at a greater risk of developing the condition, despite there being little evidence of a genetic link in most cases.

There is also a lack of awareness that there are risk factors for dementia that can be limited by a healthy lifestyle. Up to 50% of dementia cases may have a vascular component so taking measures such as eating healthily and keeping active may contribute to reducing risk.

However, surveys have shown that while older people keep active to protect their health, this is rarely in order to reduce their risk of developing dementia. While 37% of people surveyed by Alzheimer’s Society said that they were motivated to exercise regularly to lower the risk of heart attack or stroke, just 8% were motivated by the fact it could do the same for dementia. In another survey, almost one in five people over 50 (19%) said nothing could be done to prevent the onset of dementia.

• People are not aware of the risk factors for dementia, and often do not believe they can do anything to reduce their risk.

Diverse communities

Although currently limited, research conducted among different minority communities highlights particular challenges in raising awareness of dementia. There may be different perceptions of dementia in different communities, depending on their culture, background and history. Studies of people within South Asian, East European and African/Caribbean communities indicate low awareness and understanding of dementia and a lack of engagement with dementia services.

In studies of people from South Asian communities, for example, religious convention and tradition mean relatives with dementia are often cared for behind closed doors. In addition, levels of awareness appear lower than in wider samples of the population. Particular stigma issues relating to religion, culture and belief, as well as language barriers, can have an impact on attempts to raise awareness in diverse communities.

• Cultural differences can impact on understanding and awareness of dementia, and present particular challenges to tackling stigma.