‘Stigma’ associated with dementia number one concern for people living with the disease

This is an article that comes from ABC in Australia and touches on a very important topic – STIGMA and dementia. One of the goals of my work is to promote education on dementia and to break down stigma surrounding dementia. For example,

  • dementia is not an old person’s disease – it is not a part of normal aging, it is a disease of the brain and can affect anyone at any age, young people also get dementia
  • people with dementia are not immediately incompetent or incapacitated after diagnosis, most dementias develop slowly over years and people in the early stages of dementia can still live independently, contribute to their families and communities, and even maintain employment

To read more about stigma and dementia, please see my previous posts on Stop using stigma to raise money, Stop stigma – think before you speak, Breaking stigma – stop saying they are “suffering,” and Breaking down stigma – research on societal attitudes towards dementia.

I have edited this article from its original form to remove some stigmatizing words – kinda ironic that it’s an article about stigma and they still use words like “suffering.” If you want to read the original article, click on the title, below.

‘Stigma’ associated with dementia number one concern for people living with the disease

Stigma associated with dementia has been highlighted as the number one concern for people living with the disease, according to a new report. The report from Alzheimer’s Australia WA has identified a range of challenges facing the rising number of people with dementia in Western Australia. About 32,000 people are living with dementia in the state and that projection is set to grow over the next few decades as the population ages.

Funded by the State Government, the study was part of the WA Dementia-Friendly Communities project. More than 300 people living with dementia were engaged in one-on-one conversations to provide their personal experiences. CEO of Alzheimer’s Australia WA Rhonda Parker said it was the first time in Australia a study was done where genuine conversations with those affected were undertaken to determine results.

“The single biggest issue that was identified in the consultation was around stigma,” Ms Parker said. “The people we spoke to said it affects the way people engage with them and even allow them to participate in community life.”

Ms Parker said the stigma came from a lack of education. “People with dementia say their experience with the world can change from the day they tell their friends,” she said. “It’s not because their friends are bad people it’s because they don’t understand dementia and they don’t know how to respond to some of the changes in communication and behaviours.”

Statistics show that in Australia, 70 per cent of people with dementia live at home, with 30 per cent of them living alone. Ms Parker said to avoid the issue becoming a strain on the health care system in the future, work needed to be done to ensure people could live in their homes longer. “This is what people with dementia want, they want to be able to stay at home,” she said. “The people in the community, especially in service providing jobs, need to be educated on how they can communicate and support people with dementia.”

‘Dementia Friendly’ pilot projects

Ms Parker said several strategies were already in place as part of the WA Dementia Friendly Communities project. One such project involves a pilot program that has been taken on by the Cities of Wanneroo, Bunbury and Rockingham.

Mayor of Wanneroo Tracey Roberts said the project involved better understanding the needs of those living with dementia in their community. “Obviously for people who have dementia it can be very isolating and frightening,” she said. “The report is invaluable because it allows us to hear what our community has to say and enable us to prioritise our efforts.” Mrs Roberts said the City Of Wanneroo was also undertaking an audit that would assess whether the city’s physical environment met the needs of people with dementia. “Projections show that the number of the City Of Wanneroo residents with dementia will soar to more than 4,000 by 2050,” Ms Roberts said. “As the fastest growing local authority in WA it’s been identified that we’ll have the highest growth rate of the disease.”

Ms Roberts said the most important element was awareness, and that forward-thinking initiatives like this helped breakdown barriers and improve knowledge. “With that knowledge comes respect,” she said. “The City of Wanneroo will keep working very hard to ensure that we respectfully support those people with dementia who are valued residents and deserve that care.”

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