New Report Describes Stigma of Dementia
“It’s very interesting to see how people close to me act. It’s almost as if they are afraid of bringing up the subject. Being a cancer survivor, I know that I was constantly asked how I was doing while I was going through treatment. With Alzheimer’s, no one asks.” – Person with Dementia, USA, as reported in the World Alzheimer’s Report 2012
That statement really gives meaning to a new report by the Alzheimer’s Disease International entitled “World Alzheimer’s Report 2012: Overcoming the Stigma of Dementia.” The study on which the report is based was conducted online. People with dementia and family or informal caregivers were encouraged to participate in the anonymous survey. The survey received 2,500 responses from 54 countries. The people who had dementia who responded to the survey were younger than the average age of people who have dementia.
“Identifying stigma is important because 36 million people have dementia worldwide and despite the best efforts in early diagnosis, treatments, care and support being offered by countries around the world – we all struggle with the same basic issue: stigma prevents people from acknowledging symptoms and obtaining the help they need to continue to live a good quality of life,” the report's authors state.
The report’s findings include:
- Seventy-five percent of people who have dementia and 64 percent of family caregivers believe there are negative associations for people who are diagnosed with dementia in their country.
- Forty percent of people who have dementia report that people have avoided them or treated them differently.
- Twenty-four percent of people who have dementia and eleven percent of caregivers said they hid or concealed the diagnosis of dementia. Especially of concern were people with dementia who were under the age of 65 who feared they would face special issues in their jobs or at their children’s school.
- Forty percent of people who have dementia said they were not included in activities during their everyday life. Furthermore, nearly 60 percent said that friends are the people who are most likely to avoid the person with dementia or to lose contact after diagnosis. The next group of people who were described as avoiding or losing contact with the person with dementia is comprised of family members.
- Twenty-four percent of caregivers said they experience negative associations in their country about caregiving of people with dementia. Twenty-eight percent of caregivers said they feel they have been treated differently or avoided.
- Both people who have dementia and caregivers said they had stopped forming close relationships, describing it as too difficult.
Other findings also paint an interesting story. For instance, sixty percent of caregivers believe that people in general do not understand dementia in their country. They also believe that more than 40 percent of political leaders in their country do not have a grasp on dementia while close to 60 percent of the media do understand the consequences.
The report offers 10 steps to overcome the stigma of dementia. These steps are:
- Educate the public.
- Reduce isolation of people who have dementia.
- Give people who have dementia a voice.
- Recognize the rights of people who have dementia as well as those of their caregivers.
- Involve people who have dementia in their local communities.
- Support and educate informal and paid caregivers.
- Improve the quality of care provided at home as well as in facilities.
- Improve dementia training for primary health care physicians.
- Petition governments to create national Alzheimer’s disease plans.
- Increase the research into how to address this stigma.
This report serves as a call to action for finding ways to lift the stigma of this disease. By doing so, we can help people who have dementia and their caregivers have the quality of life that they deserve.
Primary Sources for This Sharepost:
Alzheimer’s Disease International. (2012). World Alzheimer’s report 2012: Overcoming the stigma of dementia.
Alzheimer’s Disease International. (2012). World Alzheimer’s report 2012 reveals stigma and social exclusion are major barriers for people with dementia and their carers. Press release.