World's largest dementia study reveals lack of understanding about the condition

Public views and attitudes matter as they have important consequences for people living with dementia.
Social care 560 747
Social care

Results from the world’s largest survey on dementia related stigma reveal a lack of knowledge about the condition, with two-thirds of people thinking dementia is a part of normal ageing.

Researchers from the Care Policy and Evaluation Centre at LSE led the global survey, which had responses from almost 70,000 people from 155 different countries and territories around the world.

Commissioned by Alzheimer’s Disease International, the results of the survey have informed the World Alzheimer Report 2019: Attitudes to dementia. The report has been released ahead of World Alzheimer’s Day on 21 September 2019.

Dr Sara Evans-Lacko, who led the survey, said: "Our findings suggest that stigma against people living with dementia is a widespread global issue. It almost certainly acts as a barrier which reduces participation in key areas of life and undermines autonomy, quality of life and access to care and support."

The majority of people living with dementia reported examples of being treated unfairly in social and intimate relationships and of not being taken seriously. More than one-third of respondents reported being avoided or shunned because of their dementia.

The findings come at a time when dementia is one of the world’s fastest growing causes of death globally. The number of people living with dementia is forecast to more than triple, from over 50 million currently to 152 million by 2050. The analysis shows that stigma around dementia is preventing people from seeking information, advice and support which could dramatically improve their quality of life.

Survey respondents included people living with dementia, carers, healthcare practitioners and the general public. A major cause for concern from the findings is that 62% of healthcare practitioners surveyed think that dementia is a natural part of the ageing process. A third of respondents felt that if they had dementia they would not be listened to by health professionals or doctors.

Almost half (48%) of the survey respondents believe that a person’s memory will never improve, even with medical support, if they have dementia. A quarter of people think that there is nothing that can be done to prevent dementia. These misunderstandings are major barriers to people accessing help, advice and support.

Dr. Evans-Lacko commented, ‘We found that public views and attitudes matter as they have important consequences for people living with dementia. Living in a country with more negative beliefs was associated with lower levels of well-being and self-esteem for people living with dementia.’

Given that two-thirds of people think that dementia is a part of natural ageing, the findings make it clear that proper understanding of the condition is low. However, the fear of developing dementia is high globally: 78% of people are concerned about developing dementia at some point in their lives.

Dr. Evans-Lacko said that the survey is ‘the first of its kind to examine the actual experiences of people living with dementia in a large global sample. It gives prominence to the voices and reported experiences of these people so that we can understand the areas they feel treated unfairly. These experiences should guide the focus of any anti-stigma effort. We are delighted to have been able to bring our rigour and analytical expertise to the table and are conscious of the tremendous importance of this exercise at a global level.’

Behind the article

Analysis of the survey is set out as part of the World Alzheimer Report 2019. The full findings from the survey are reported in Chapter 2. 

The survey was led by Dr Sara Evans-Lacko. The research team included Jem Bhatt, Adelina Comas-Herrera, Dr Francesco D’Amico, Dr Nicolas Farina, Sophie Gaber, Prof Martin Knapp, Maximilian Salcher-Konrad, Madeleine Stevens and Emma Wilson.