Battling the stigma of Alzheimer's

Norma Inniss, President of the Alzheimer’s Association of Trinidad and Tobago (AzATT), from its inception 11 years ago, has this short message, “Time for action is now. There is no time to lose.” Inniss says, “ This year our special target group is persons with early stage dementia and their care partners. All members, caregivers, relatives, friends, interested persons and the public are invited to attend/participate in the full programme, and take action to advocate for persons affected by this disease.”

As (AzATT) carries out a month-long programme of activity which has already been published, we continue to share helpful publications from the president.

This an excerpt from ADI’s “Overcoming the Stigma” by Nancy Schonwalter.

Many people may delay seeking early Alzheimer’s diagnosis because they fear the effect that the stigma of Alzheimer’s Disease (AD) may have on their lives. They may try to hide their symptoms hoping no one will notice, or even deny to themselves that something is wrong. Family members who notice can be paralysed by the dread of what people will think if they know that their loved ones have AD.

Exactly what is this stigma about? A stigma is defined as a mark or sign of shame or disgrace.In action, it causes people to shun another person who they perceive is being identified with the stigma. People can feel uneasy or embarrassed when they interact with a person with Alzheimer’s, so much that the uncomfortable feeling can extend to the relations with family members as well. They may avoid the person with AD or treat him/her in a patronising manner when AD has only reached the very early stages.

It is important for family and friends to overcome the myths surrounding the disease. People with Alzheimer’s don’t become unable to remember or take care of themselves overnight, instead the disease progresses with a slow decline along with periods when some of their lost capabilities may briefly return. It is not until the later stages that someone’s ability to function will become seriously impaired. This is especially true if a loved one’s Alzheimer’s disease is diagnosed early and he or she responds well to treatment.

The diagnosis of Alzheimer’s disease will open a floodgate of emotions for your loved ones and yourself. Add to that the changes in the way people think and act towards you and it becomes even harder to adjust to the new reality. One successful method caregivers have tried is to talk with people who are close to the person and explain the facts about the disease. Often they can dispel some of the myths that people believe to be true. In addition, when everybody knows, you can avoid the feelings of embarrassment.

Hiding your loved one’s Alzheimer’s is not beneficial to anyone.

There is no more valuable a weapon when battling an unfair stereotype than to seek the community of others who share this common experience. You should consider joining a support group as soon as your loved one is diagnosed. A support group will not only help you combat feelings of shame, isolation and depression, but it can also support you when you face the same thoughtless action by someone who simply does not understand the disease.

Former American President Ronald Reagan’s revelation to the world in 1994 that he was a person with Alzheimer’s disease, greatly aided the struggle to diminish the stigma associated with the disease. Growing public awareness can only continue to increase the focus on treatments for people with AD and act to minimise the stigma that is still associated with Alzheimer’s disease.

The Alzheimer’s Association of Trinidad and Tobago offers support, information and education sessions to individuals with Alzheimer’s and their family and friends.