When a loved one starts to lose his or her memory, it can be a struggle for the entire family. The person who has been the head of the family may soon fade from the person they once were, leaving their loved ones to wonder what will come next. The stigma associated with Alzheimer’s disease has a significant negative impact on the lives of people with Alzheimer’s and their caregivers. Around 25% of dementia patients hide their diagnosis, and 40% said they have withdrawn from many everyday activities according to recent studies. There are many negative public images and stereotypes associated with dementia, which contributes to a lack of engagement with people with this condition. Many people with dementia experience social isolation due to withdrawal from friends and other important people in their lives.
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 can’t function or enjoy activities. Stigma is the use of negative labels to identify a person with a disability or illness. Stigma around Alzheimer's disease exists, in part, due to the lack of public awareness and understanding of the disease, preventing people from:
Seeking medical treatment when symptoms are present
Receiving an early diagnosis or any diagnosis at all
Living the best quality of life possible while they are able to do so
Making plans for their future
Benefitting from available treatments
Developing a support system
Participating in clinical trials
Stigma and lack of awareness also impacts Alzheimer's disease research. The government funds Alzheimer's research at lower rates than other diseases, even when the cost of caring for Alzheimer's disease is significantly higher. Stigmas and stereotypes are significant obstacles to the well-being and quality of life for those with dementia and their families. Here are some examples of the stigma those with Alzheimer’s may experience:
A diagnosis may test friendships. Friends may refuse to believe the diagnosis or withdraw, leaving a feeling of abandonment or isolation.
Relationships with family may change. Family members may not want to talk about the disease, assuming a low quality of life, or may avoid interaction all together.
Others may approach the care partner to inquire how one with Alzheimer’s is doing rather than approaching the individual directly.
The reaction of some friends and family to the diagnosis may prevent seeking help from others.
With proper assistance, people with Alzheimer’s can enjoy meaningful activities and maintain relationships. There are plenty of 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 benefiting from available treatments allowing them a high quality of life which is absolutely possible with Alzheimer’s disease.
What Can You Do?
Watch your loved one for changes.
Do not pass judgment on the changes you observe.
Talk to the individual who exhibits the symptoms; do not talk around the person.
Encourage the individual to seek treatment. Make sure the person understands there is possible treatment available with a diagnosis.
Do not exclude the individual from activities, do the opposite, include the individual in activities.
Jason A. Waddell is a Board Certified Florida Elder Law Attorney who practices on the Panhandle of Florida.