Stigma compounds difficulties for people living with dementia

The world’s largest dementia study reveals a “dangerous” amount of stigma surrounding the condition, which can leave people living with the disease socially isolated and unable to access necessary support.

The World Alzheimer Report 2019: Attitudes to Dementia collates responses from almost 70,000 people across 155 countries and territories.

It shows two in three people believe dementia is a natural part of the ageing process rather than a medical condition, with one in four believing nothing can be done to prevent it.

The study is the first to provide a factual baseline of views and opinions surrounding dementia.

Alzheimer’s Disease International’s chairman Glenn Rees says he’s shocked the condition is so poorly understood.

“I’m very surprised that so many people really believe it is a natural part of the ageing experience,” he told Community Care Review.

“This stigma is dangerous, not only for the person with dementia but also for the family and carers, because it results in social isolation. It also prevents people from obtaining a diagnosis, which prevent them from accessing the advice, support and services they need to go on enjoying their life.”

Mr Rees says the stigma doesn’t just stem from ignorance, but from cultural factors and the way people relate to one another.

“We can explain all about dementia but it makes little difference,” he said. “It’s often about social avoidance and embarrassment.”

While the exact causes of dementia remain unknown, research over the last decade has shown its origins are medical, with risk factors including lack of social interaction, poor physical exercise, obesity, high cholesterol and smoking.

The number of people living with dementia is forecast to more than triple, from over 50 million currently to 152 million by 2050.

A global problem

Stigma is evident worldwide but can be most prevalent in developing countries. “It can affect your daughter’s chance of marriage, for example, or neighbours may think you’re harming the older person,” says Rees.

It will take a worldwide movement to change attitudes to dementia, he says.

“The more people are familiar with the condition and what it means in a person’s life and their families, the more they will be sympathetic and able to relate,” he says.

Examples of dementia-inclusive initiatives around the world include memory cafes and dementia-friendly communities and villages. In Taiwan, cafes have sought people with dementia to run them; in South Korea, children are educated about dementia in schools and encouraged to do voluntary work to help those with the condition in the community.

Towns and cities must also be better designed to support people with dementia. This means providing good visual access, reducing unwanted stimuli and highlighting important features, for example.

Incorporating dementia design

Incorporating dementia design as standard would go a long way in increasing overall awareness and acceptance of the condition, says Director of HammondCare’s Dementia Centre, Professor Colm Cunningham, who contributed a chapter to the report.

“It can be daunting for businesses such as shops, banks, cafes, theatres, transport providers etc. to learn more about dementia and to start to look at dementia-related design,” he said.

“But in doing so they are sending out a strong positive message about their nature and their brand and… helping to increase awareness, which in itself can help reduce stigma.

“We can decide where we spend our money. Making a decision on a conference venue, a choice of hotel or restaurant and who we travel with should increasingly be based on their embracing of dementia considerate design and their investment in staff awareness.”

Professor Rees says the many inspiring examples of dementia-inclusive initiates around the world offer hope.

“It’s just that we need a lot more of them,” he says.

New ABS statistics on dementia

Meanwhile, the Australian Bureau of Statistics’ latest report on causes of death in Australia shows dementia, including Alzheimer’s Disease, remains the second leading cause of death, with a 68.6 per cent increase in deaths from dementia since 2009.

Almost 14,000 people with an average age of 89 died from dementia and Alzheimer’s disease in 2018, the Causes of Death, Australia report says, representing 41.2 deaths per 100,000 people  compared to 32.3 deaths per 100,000 people in 2009.

Sixty-five per cent of those died from dementia in 2018 were women.

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