Many carers feel negative, ashamed or even embarrassed about dementia and how it affects the person they support. This is called stigma. 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 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, even happy.
The common stereotype of people with dementia is they are victims 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, and dependent.
Many people with dementia do not meet this stereotype of people with dementia. While they do have a brain disease, and may have problems with memory and concentration, they know who they are! Importantly the ability to experience joy, sadness and other emotions does not stop with dementia. 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 doctors and other health professionals) also learned this negative stereotype of people with dementia. This means doctors and other professionals might speak to you, the carer, directly and treat the person with dementia as if they can’t understand or make decisions. Carers find this not only makes them uncomfortable but the person with dementia feels belittled. Feel confident to ask doctors and other professionals to treat the person with dementia as they would their other patients without dementia. People with dementia have the right to get information and make choices about their treatments.
Myth 2: Carers suffer from an ‘unremitting burden’
Fact 2: Supporting a person with dementia can be hard, but with planning and support for the carer it can be a worthwhile, even rewarding experience.
Many carers do not view themselves as ‘carers’: “I’m his wife, not a ‘carer’. I promised ‘for better or for worse’.”
Some family members view care as an opportunity to return the care and support they received from the person with dementia in the past. Despite best intentions, carers acknowledge supporting a person with dementia can be tiring and difficult at times. Some types of dementia and different symptoms are more difficult to manage than others. By planning and using services you can take a break from caring. It is important to communicate well with family and friends about the support you need.
Some situations make living with dementia more challenging including marriages or partnerships later in life, long-term relationship difficulties, a history of alcohol or drug dependency, or isolation from support systems. Discussing these issues with your doctor and asking for referral to specialist counselling can help you make decisions in the best interest for both you and the person with dementia.
Myth 3: People with dementia cannot learn new skills
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. It can take longer and requires more effort, 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.
However, it can be stressful or confronting when you have to learn something new. Some people with dementia find it’s frustrating and sometimes avoid learning situations. Take a step back and encourage the person to take their time, use pencil and paper for notes, and ask for help if they really get stuck.
Myth 4: Nothing can be done for people with dementia
Fact 4: There are many treatments and strategies that can slow progression and help with symptoms (see Managing changes).
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 3.2 Medications, 3.3 Cognitive therapies and rehabilitation, and 3.13 Use therapies to help people maintain independence.
New medications for dementia are being developed around the world. Before drugs are released, clinical trials are conducted and people living with dementia can volunteer to take part. Check these websites to find out about clinical trials in Australia via Dementia Australia or the Australian Dementia Network.