Last week I wrote about Alzheimer’s Awareness Month and the focus of this year’s campaign being the stigma accorded to dementia and the need to overcome this issue. Thornicroft stated that “Stigma can be seen as an overarching term that contains three important elements: 1) problems of knowledge (ignorance), 2) problems of attitude (prejudice), and 3) problems of behaviour (discrimination).” Facing stigma is often a primary concern of people living with Alzheimer’s and their care partners.
There are numerous reasons why we need to fight Alzheimer’s stigma. Stigma can prevent people from seeking medical treatment when symptoms are present. It can prevent people from receiving an early diagnosis or any diagnosis at all. It can prevent people from developing a support system and benefitting from available treatments. It can also prevent people from participating in clinical trials.
Many misconceptions of Alzheimer’s exist. It is widely believed that Alzheimer’s and dementia are a normal part of aging. This is not true. It is a disease that develops from a wide variety of risk factors. Many people believe that Alzheimer’s patients become violent and aggressive. This only happens with some patients and is typically the result of a deep sense of confusion and fear. It is also widely believed that people with Alzheimer’s cannot function or enjoy activities. With proper assistance, people with Alzheimer’s can enjoy meaningful activities and maintain fulfilling relationships.
As a community, what can we do to overcome the stigma associated with Alzheimer’s and other dementias? Here are some tips for the members of our community living with dementia to help alleviate this social issue:
• Be open and direct. Engage others in discussions about Alzheimer’s disease and the need for prevention, better treatment and an eventual cure.
• Communicate the facts. Sharing accurate information is instrumental to dispelling misconceptions about the disease. Whether a pamphlet or a link to online content, offer information to help people better understand Alzheimer’s disease.
• Seek support and stay connected. It is important to stay engaged in meaningful relationships and activities. Whether family, friends or a support group, a network is critical.
• Do not be discouraged. Denial of the disease by others is not a reflection of you. If people think that Alzheimer’s disease is normal ageing, see it as an education opportunity.
• Be a part of the solution. As an individual living with the disease, yours is the most powerful voice to help raise awareness, end stigma and advocate for more Alzheimer’s support and research.
In all stages, the stigma associated with dementia also leads to a focus on the ways in which the person is impaired, rather than on his or her remaining strengths and ability to enjoy many activities and interactions with other people. This deprives the person with dementia of the companionship of family and friends; the resulting isolation and lack of stimulation causes disability beyond that caused by the illness itself
To help stop the stigma visit www.ilivewithdementia.ca. The Alzheimer Society of HPE offers free education and support programming to local individuals and families. For more information please visit www.alzheimer.ca/hpe or call 613-962-0892.