The stigma associated with having Alzheimer’s disease and/or any other type of dementia can create a profoundly isolating, painful experience. As a person starts to go through some of the early symptoms, such as memory loss, difficulty in completing everyday tasks, and not being able to follow conversations, that person may be reluctant to share these symptoms with family, friends, or a doctor out of fear of knowing what might come next. Part of that fear can be tied to the stigma that has accompanied Alzheimer’s disease and other dementias.
According to the World Alzheimer’s Report for 2019, stigma takes many forms. It can occur when a person with dementia is no longer accepted by friends due to misconceptions about Alzheimer’s disease. Without a realistic understanding about the effects of Alzheimer’s disease, people may misinterpret behaviors, thinking that someone with Alzheimer’s disease is doing something (e.g., wandering, being paranoid) on purpose. Also, there can be misinterpretation over the abilities of a person with a diagnosis, thinking that the person can no longer make any decisions and does not want to be involved in the care planning. These misconceptions can result in leaving that person out of the conversation and create a worse environment.
Despite the lingering effects of stigma of having Alzheimer’s disease or other dementias, there are many efforts underway to alleviate the stigma and replace it with understanding and much-needed support. There are Dementia Friendly communities in more than half of the United States currently as a part of the Dementia Friendly America network . Dementia Friendly communities are created to support individuals living with dementia and those caring for them. The communities create sector-wide networks to keep persons with dementia engaged and connected.
The Alzheimer’s Association also serves to educate the community and support persons living with Alzheimer’s disease and their caregivers. Through statewide chapters and the national office, there is more information about the disease, as well as ways to cope and find support for dealing with stigma.
The Centers for Disease Control’s (CDC) National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) provides information and support to promote health of older adults. The CDC also provides recommendations for addressing stigma associated with Alzheimer’s Disease and other dementias. Some of their recommendations include encouraging persons with dementia and their family members to discuss any concerns with their health care provider, promote engagement of persons with dementia in senior centers and adult day care programs, and support opportunities to help the general public’s understanding about Alzheimer’s disease through education and information in public settings. A good approach is to keep positive and provide information. The important thing is to meet people where they are, those with dementia and/or Alzheimer’s disease, as well as those who need more information, and offer support for both.
Kathy Dreyer, Ph.D., is the Director of Strategic Projects at AGE-u-cate® Training Institute, which develops and delivers innovative research-based aging and dementia training programs such as Dementia Live® and Compassionate Touch®, for professional and family caregivers; kathy.dreyer@ageucate.com