Many people with dementia and families feel negative, ashamed or even embarrassed about dementia and the changes it brings. 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: Dementia only affects older people
Fact 1: Dementia can affect people in their 30s, 40s, 50s, and early 60s
Young-onset dementia is often overlooked or misdiagnosed because people assume memory or behavioural changes ‘can’t’ be dementia as it is ‘an older persons’ disease’. People living with young-onset dementia may still be working, raising children or teenagers, paying a mortgage, supporting ageing parents, and active in social, sporting, and community roles. This means their needs and the needs of their carers can be very different to those of older people. Recognising that dementia doesn’t discriminate by age is the first step to getting the right support, early.
Myth 2: Behaviour or personality changes mean someone is being difficult
Fact 2: Changes in behaviour, emotions, and personality are symptoms of the disease, not a choice
Young-onset dementia such as frontotemporal dementia, Alzheimer’s disease, or rare genetic conditions can affect emotional regulation, empathy, impulsivity, or social judgement. This can be confronting, especially when the person is young and previously independent, organised, or calm. Understanding behaviour as a symptom (i.e. not intentional) reduces guilt for the person living with dementia and stress for others. With the right strategies and support, many of these changes can be understood, managed, or minimised.
Myth 3: People with dementia are victims suffering from the disease
Fact 3: 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 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 decisions about their lives.
Myth 4: Carers need to give up work and interests to provide support
Fact 4: 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.
For young-onset dementia, caring for someone is often unexpected and occurs at a busy time of life. People are usually working, raising children and have financial commitments. To support someone with young-onset dementia, family members/carers may have to transition to part-time employment or change work arrangements, and having children to look after as well can also add to the complexities of caring.
Discussing these issues with your employer, knowing your rights at work, obtaining financial counselling and careful planning to balance care with work and family arrangements is essential. Planning can help you make decisions in the best interest for both you and the person with dementia.
Helen’s husband, Steve, was diagnosed with fronto-temporal dementia at age 53. He was a self-employed car mechanic. They have a blended family with three children 17, 15 and 9. Steve had unpredictable behaviour and keeps unpredictable hours – he would become angry with the children if they played music in the afternoon or invited friends over after school. Helen had a great job she loved and did not want to give it up – or the income it gave the family. Helen creatively addressed this situation by moving into new home with a granny flat. Steve happily moved into the flat as his own space. This gave the family some space. Helen cut down hours at her work and partnered with NDIS to support Steve.
Myth 5: People with dementia cannot learn new skills
Fact 5: 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. If you are a supporter, take a step back and encourage the person to take their time, use pencil and paper for notes, and if they really get stuck, ask for help.
Myth 6: Nothing can be done for people with dementia
Fact 6: There are many treatments and strategies that can slow progression and help with symptoms (see the section on 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 3.6 Medications to manage changes 3.7 Cognitive therapies and rehabilitation and 3.20 Use therapies to help people maintain their 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.
