Dementia and the Impact of Stigma

The symptoms of dementia can make it at times a challenging condition to live with.

As people with dementia are often focusing on trying to live well with their condition, many also face social prejudice from the stigma of having the diagnosis of dementia.

According to Alzheimer’s Australia, there are more than 400,000 Australian living with dementia. And without any medical intervention, it’s expected that that number will rise to 1.1 million people by 2056.

To better understand the beliefs and attitudes people have towards dementia, Alzheimer’s Australia surveyed people living with dementia and their carers, along with the general public.

People Living with Dementia

The four statements that people with dementia most agreed upon were (from highest to lowest) were the following:

1. I feel less competent than I did before having dementia.
2. I encounter embarrassing situations as a result of having dementia.
3. Due to having dementia I sometimes feel useless.
4. I feel lonely more often than usual.

The survey results showed that 94% of people living with dementia have encountered “embarrassing” situations as a result of their dementia. Over 96% of people with with dementia feel less competent than they did before having dementia

It was also suggested that people with dementia have a strong sense of feeling separate from others.

“People in the public are embarrassed and uncomfortable around me at times and having been a social person it upsets me that they think I am stupid,” said one respondent.

“Having dementia I have lost friends and family members who don’t want to know about the dementia journey… People often talk about me to others and not to me when I am sitting right next to the person,” said another.

Carers of People with Dementia

The most agreed upon statements from carers were similar to those given by people with dementia, however in a different order. These were:

1. I feel lonely more often than usual.
2. I encounter embarrassing situations because the person I care for has dementia.
3. I feel set apart from others who do not care for someone with dementia.
4. Due to the person I care for having dementia, I sometimes feel useless.

In fact, 60% of carers have found themselves in embarrassing situations.

Much like people with dementia, carers also struggle with feeling disconnected from others.

“Friends and family do not help in practical ways when needing extra reassurance and company. My husband’s work mates have not kept in contact since his diagnosis,” said one carer

“My experience was that all the concern was for my late husband. I had no problem with that but I would have liked to be asked how I was doing,” said another carer.

“It is such a lonely and isolating condition. My mother’s friends stopped seeing her because she was difficult to engage with. She would often comment she hadn’t heard from them anymore. Heartbreaking,” said a third carer.

The General Public and Dementia

The general public’s responses reflected generally positive attitudes towards people with dementia, which contrasts with the internalised stigma perceived by people with dementia and carers.  

While the general public reported low stigma towards people with dementia, their comments suggested that there is still a lack of understanding:

“It is something many people still don’t understand (including myself). I don’t know anyone with dementia. Maybe I did, but I just thought it was a sign of “getting old”.”

“I really don’t know what I can do as a member of the public. I am not sufficiently competent in this area.”

Almost 50% of the general public felt frustrated because they were unsure of how to help people with dementia. And about 50% of the general public want to know more about how they can help.

What is a reality for many carers, is still a situation that many people do not see themselves in. About 33% of the general public could not imagine caring for someone with dementia.