Facing stigma is often a worry of those with Alzheimer’s and their caregivers. People report being misunderstood, or even mistreated, due to the myths and misconceptions surrounding Alzheimer’s. Stigma is using negative words and/or actions to disgrace a person because of a disability or illness. It may arise around Alzheimer’s because the lack of public awareness and/or the lack of knowledge about the disease.
Stigma has a negative effect on those with Alzheimer’s because it may prevent them from seeking medical treatment, receiving a diagnosis, living the best quality of life possible, making plans for the future, benefiting from treatments, creating a support system, and participating in clinical studies. Stigma also impacts the research for Alzheimer’s. The government funds research for Alzheimer’s disease at lower rates than other diseases, even though the cost of caring for Alzheimer’s is significantly higher.
Stigma and stereotypes are a significant obstacle to well-being and quality of life for those with Alzheimer’s. Family members may not want to talk about the disease or may perceive that the person with Alzheimer’s has little to no quality of life. The relative may even avoid interacting with that person. Friends could begin withdrawing from the person’s life, leaving them feeling abandoned or isolated. Rather than asking the Alzheimer’s patient directly how they are doing, people may ask the caregiver instead. These reactions can lower the quality of a person’s life and even discourage them from seeking treatment.
Clearly, the stigma associated with Alzheimer’s has a negative impact on those living with the disease, their caregivers, their family, and their friends. What can be done to erase some of this stigma? Consider 5 ways:
Be open and direct about Alzheimer’s. Do not be afraid to talk about the disease and the need for prevention and better treatment.
Communicate the facts to dispel the myths. Share information about the disease so your loved ones and others can be accurately informed.
Seek support and stay connected. Develop a network of support with family, friends, and others to maintain meaningful relationships and activities.
Do not be discouraged. Rather than becoming discouraged by others’ misconceptions, view it as an opportunity to teach them.
Take part in the solution. Have an active voice in raising awareness and advocating for Alzheimer’s research.