Many care partners experience stigma
Many care partners experience stigma about dementia and how dementia affects the person they support. This means that they may have negative feelings or are ashamed about the person they care for having dementia. In contrast, people who have other chronic diseases such as arthritis or heart disease are less likely to feel ashamed. Stigma about dementia is because of the myths and stereotypes that we have absorbed from television, books, movies, the news, and society.
Let’s bust some of these myths and stereotypes.
Myth 1: People with dementia are victims suffering from the disease
Fact 1: Many people with dementia have control, are comfortable, content, and happy
A common stereotype of people with dementia is that they are victims who are suffering from a brain disease that robs them of their memories, identity, and life. People with dementia are often shown on television, in books, and described in the news as powerless, dependent and requiring compassion and care.
Many people with dementia do not meet this stereotype. While they do have a brain disease, and may have problems with memory and concentration, they 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 need help with some tasks.
Unfortunately, many people in the community including some health and social care providers also have this stereotype of people with dementia. This may come across by not always including the person living with dementia in decisions about their care, or talking to you, the care provider, instead of to the person with dementia directly, or not giving the person with dementia information and choices. It is important to speak up and ask that the person living with dementia be included in decisions about their care.
Myth 2: Care partners suffer from a ‘constant burden’
Fact 2: Supporting a person with dementia can be hard, but with planning and support it can be a worthwhile and rewarding experience.
Many care partners do not view themselves as ‘care partners’ or ‘caregivers’: “I’m his wife, not a ‘care partner’. I promised ‘for better or for worse’”. Some family members view caring as an opportunity to return the support they received from the person with dementia in the past. Many find joy from being able to spend time with the person with dementia and perhaps build an even stronger relationship.
Despite these positive experiences, care partners acknowledge that supporting a person with dementia can be tiring and difficult at times. Some symptoms of dementia are more difficult to manage than others. By planning and using services, you can take breaks from caring. These breaks can give you opportunities to relax or do something for yourself. They can also give you more energy to care for the person with dementia. It is important to recognize when you need a break and to communicate with family and friends about the support you need. Asking for help is a sign of strength!
Myth 3: People with dementia cannot learn new things
Fact 3: People with dementia continue to learn!
People with dementia often have poor short-term memory. This means they can’t remember things that happened recently. Because of this, it can take more effort, and more time for people with dementia to learn new things. However, it is possible for people with dementia to learn new things. For example, many people with dementia learned to use Zoom to video-chat during the pandemic. Some people with dementia even taught others how to use these resources!
It can be stressful for a person with dementia to go into a situation where they have to learn something new. Some people with dementia have told us that it’s frustrating and they sometimes avoid these situations. If you are supporting a person with dementia who wants to learn something new, encourage them to take their time, use pencil and paper, and ask for help when they need it.
Myth 4: There is nothing that can be done for people with dementia
Fact 4: There are many treatments and strategies that can slow progression and deal with symptoms
It is true there is not a cure for dementia. The same is true for many other chronic diseases. 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 the following articles on our site about medications, cognitive therapies and rehabilitation, and therapies to help maintain independence.
Living a healthy lifestyle, whether as a care partner or a person with dementia, is a strategy that promotes physical wellbeing, reduces stress, and promotes happiness. You can continue to enjoy living your life while caring for someone with dementia