Much of the stigma around dementia is due to lack of understanding and common myths and negative stereotypes about the condition. It is important to challenges these myths and stereotypes and guides people recently diagnosed to live positively with dementia.
What is self-stigma
When first diagnosed, some people feel shamed or even embarrassed about dementia and how it affects them or the person they support. But people with other chronic diseases like cancer or heart disease are far less likely to feel ashamed.
This stigma is often due to the myths and stereotypes about dementia which come from inaccurate portrayals of the condition via television, books, movies, the news and society.
Myth: People with dementia are victims suffering from the disease
Fact: Many people with dementia have control, are comfortable, content and even happy.
While people with dementia do have a brain disease, and may have problems with memory and concentration, many know who they are and remember important things. Many people with dementia do a lot for themselves and for others and are in control of their lives, even if they get help for some tasks.
Unfortunately, many people in the community (including health care professionals) also learned this myth about people with dementia. This means doctors and other professionals might treat you as if you can’t understand or make decisions. They might talk to your family instead of directly to you, or not give you information and choices.
You may need to be assertive. Ask your doctors to treat you as they would their other patients without dementia, talking to you as a person with rights to information and choices about treatments.
Myth: People with dementia cannot learn
Fact: People with dementia continue to learn.
Some people with dementia will have poor short-term memory and have difficulty remembering things that happened recently. It can take longer and requires more effort to learn new things, but people with dementia do learn. For instance, many people with dementia learned to use Zoom along with everyone else during the COVID-19 pandemic.
It can be stressful or confronting when you have to learn something new. Some people with dementia find it frustrating and may avoid learning situations. If you are about to embark on new learning, take your time, use tools (like pencil and paper) and get help when you need it.
If you want to learn more about dementia, read the article 1.4 Learn from dementia experts. Choose what information you need, and in what form.
Myth: Nothing can be done for people with dementia
Fact: There are many treatments and strategies that can slow progression and help with symptoms.
As with many other chronic diseases, there is not a cure for dementia. But there are treatments and strategies that can help improve quality of life, wellbeing and functioning in daily life. There are medications that may help slow the progress of dementia, and non-drug treatments that can help. For more information read 3.4 Therapies to help memory and thinking with information on medications, brain training, cognitive rehabilitation and cognitive stimulation therapy to help with memory and thinking difficulties.
If you have experienced self-stigma, or others treating you differently because you have dementia, you are not alone. Read 2.12 Manage stigma from others and 1.7 Learn from others with dementia. For many, meeting others living positively with dementia was a turning point in finding hope.
For more inspiration & strategies
Read these stories about people living with dementia:
- Phil’s story: from dismal diagnosis to dementia advocate
- Bobby’s story: adjusting, accepting, and succeeding