September 21 is World Alzheimer’s Day.
- 75% of people with dementia and 64% of family carers believe there are negative associations for those diagnosed with dementia in their countries
- 40% of people with dementia report they have been avoided or treated differently
- Report provides 10 key recommendations for governments and societies to include people with dementia into everyday activities
The latest World Alzheimer Report released today by Alzheimer’s Disease International (ADI) reveals that nearly one in four people with dementia (24%) hide or conceal their diagnosis citing stigma as the main reason. Furthermore, 40% of people with dementia report not being included in everyday life. What is startling is that nearly two out of three people with dementia and their carers believe there is a lack of understanding of dementia in their countries.
The report provides 10 recommendations to enable governments and societies to overcome stigma, including greater public education, with nearly half of the survey respondents indicating education and awareness as a huge priority. Another key point is to encourage people with dementia to share their experiences and to ensure that they are included in everyday activities.
Nicole Batsch, report author, comments, “Stigma remains a barrier to making progress in all other dementia initiatives, such as improving care and support for people with dementia and family carers and funding for research. The report reveals that people with dementia and carers feel marginalised by society, sometimes by their own friends and family members. What they want is to be treated like normal people with a focus on their abilities and not on their impairments. Bringing light to these issues will help improve the quality of life for people with dementia and for their carers.”
Marc Wortmann, Executive Director of ADI, says, “Dementia and Alzheimer’s disease continue to grow at a rapid rate due to global ageing. The disease has a huge impact on the families that are hit, but also affects health and social systems because of the economic cost. Countries are not prepared and will continue not to be prepared unless we overcome the stigma and enhance efforts to provide better care for those who have dementia and find a cure for the future.”
The new report reveals the following:
- 24% of people with dementia and more than one in ten carers (11%) admitted to hiding or concealing the diagnosis of dementia – with those under the age of 65 believing they might face special issues in their workplace or children’s school
- 40% of people with dementia reported not being included in everyday life
- Nearly 60% of the above indicated that friends are the most likely people to avoid them or lose contact after diagnosis followed by family members
- A quarter of carers (24%) feel there are negative associations in their country about carers of people with dementia while a similar number (28%) feel they have been treated differently or avoided
- Both people with dementia and carers admitted they had stopped themselves forming close relationships as it was too difficult
- Education, information and awareness were identified as priorities to help reduce the stigma of dementia
The report is based on a global survey of 2500 people (those with dementia and family carers) across more than 50 countries. Just over 50% of the respondents with dementia had Alzheimer’s disease and just under a half of the total number were under the age of 65. The main aims of the survey were to record individual experiences of stigma by people with dementia and family carers and help identify whether national dementia plans have had an impact on reducing stigma.
Dementia is seriously disabling for those who have it as well as their families and carers. According to estimates from the World Health Organisation (WHO), there is currently one new case of dementia every four seconds. If we take into account the rapid increase in the elderly population, there will potentially be 115 million people with dementia worldwide in the next 40 years, thus placing a major burden on health and social systems. Only eight nations out of 193 WHO countries have implemented national dementia plans, showing that more could be done by governments to help alleviate the associated economic and social costs.
Recommendations to tackle stigma surrounding dementia
- Educate the public
- Reduce isolation of people with dementia
- Give people with dementia a voice
- Recognise the rights of people with dementia and their carers
- Involve people with dementia in their local communities
- Support and educate informal and paid carers
- Improve the quality of care at home and in care homes
- Improve dementia training of primary healthcare physicians
- Call on governments to create national Alzheimer’s disease plans
- Increase research into how to address stigma
- Alzheimer’s disease: Frequently Asked Questions
- Early symptoms of dementia
- Symptoms and diagnosis of Alzheimer’s
- Overcoming the stigma of dementia (Video)
- Cases on the rise in India
- Dementia set to triple by 2050 but still largely ignored