The stigma must end: Why attitudes around dementia need an overhaul

A new study has raised fears the stigma around dementia and Alzheimer’s disease is so strong some people may be avoiding potentially critical treatment as a result.

Researchers at the University of Pennsylvania asked 317 adults without dementia to react to a fictional description of someone living with early stage Alzheimer’s disease. Their responses showed just how much fear and misinformation there is around the condition.

Each participant was required to read a brief description of the person’s symptoms and complete a survey, and more than half  believed that a person showing mild cognitive impairment or dementia would be discriminated against by employers. They also believed that someone with dementia would be would be excluded from decisions around their own health and treatment.

The study’s authors said these worries risked preventing people from seeking treatment for themselves, as well as getting access to clinical trials that are essential to making advances in dementia treatment.

Their findings were published in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association.

“We need to reduce the stigma to encourage persons with mild or even no symptoms of Alzheimer’s disease to enrol in prevention trials to find effective treatments,” Maria Carrillo, chief science officer at the Alzheimer’s Association in the US, said.

Read more: The four life-changing moves to make after a dementia diagnosis

Early diagnosis of dementia is also imperative for other reasons, Carrillo added. For example, an early diagnosis allows the person and their family ample time to make financial and residential plans for the future, and to access the many support services available to people with dementia and Alzheimer’s and their families.

In Australia, the Alzheimer’s Association  and Dementia Australia also emphasise the importance of early diagnosis. Susan McCarthy, the executive director of client services at Dementia Australia, told Starts at 60 that many people were unaware that it was possible to live independently for many years after a dementia diagnosis.

“For some, [the progression] can be fast, but we also see people who’ve been living with dementia for 20 years,” she said.

Waiting until the condition had advanced to make important decisions around finances and care caused many families difficulty, she added.

“We see the impact on people and their families and carers when this planning hasn’t been put in place – issues can become very complicated.”

Sadly, dementia is an issue that affects hundreds of thousands of Australians. In the next five years, 500,000 people will receive a dementia diagnosis. As it is, more than 413,000 Aussies are currently living with dementia, the most common form of which is Alzheimer’s.

Taking proactive steps to reduce your chance of developing the disease are key and experts recommend a healthy diet full of brain-boosting foods and regular exercise as a good place to start.

Have you or a family member been worried about a dementia diagnosis?