Photo taken from the Australian documentary, ‘The Long Goodbye’, that aired on the ABC last year. Created by Luminous Films Pty Ltd and Kaye Harrison, the film follows the journey of families with dementia and delves into the various issues that people with the disease face, day-to-day.

By Yasmin Noone

One in every four people living with dementia around the world shamefully denies having the disease because of the social stigma attached to the condition, according to a new international report released on World Alzheimer’s Day today.

The World Alzheimer’s Report, issued by Alzheimer’s Disease International (ADI), claims that one in 10 carers hide the diagnosis of the person living with the disease from others for fear of being victimised.

Around three quarters of people with dementia also said they felt negatively judged because of the condition, and 40 per cent claimed they had been victimised due to the stigma that goes hand-in-hand with a diagnosis.

The figures are based on a survey, conducted by ADI, which collated the responses of 2,500 people from 54 different countries.

“Respondents not only answered the quantitative questions, but also added hundreds of narratives to elaborate on and explain their responses,” the report states.

“The people with dementia who responded were younger than average.

“More than half of the respondents have some connection to an Alzheimer’s organisation or service provider…The people with dementia were very likely to have received a diagnosis and were aware of available services.”

The report concludes that the people with dementia and carers who participated in the survey should, technically, be less affected by stigma than those who the survey did not reach.

The survey results therefore could under-represent the true scale of the worldwide dementia stigma-related issue.

The findings are “disturbing”

The new ADI report shines the international spotlight on the social stigma attached to dementia and the work the global community has yet to do to challenge negative stereotypes associated with the condition.

Chairman of ADI, Dr Jacob Roy Kuriakose, explains how the social stigma is so widespread in the report’s preface.
 
“Symptoms of dementia are perceived differently in different parts of the world,” Dr Kuriakose said.

“This includes considering dementia as a normal part of ageing, mental illness, something metaphysical linked to supernatural or spiritual beliefs or as an irreversible disease of the brain.

“Low levels of understanding about dementia lead to various misconceptions resulting in perpetuation of stigma which is prevalent in most countries at various levels.

“People with dementia are often isolated, or hidden, because of stigma or the possibility of negative reactions from neighbours and relatives to behavioural and psychological symptoms.

“The idea that nothing can be done to help people with dementia often leads to hopelessness and frustration.

“Urgent action is required to improve the understanding of dementia and so reduce stigma.”

National president of Alzheimer’s Australia, Ita Buttrose, said the disturbing findings in the ADI report are consistent with recent studies carried out in Australia.

“Stigma can impact severely on the quality of life of people with dementia, their carers and families,” she said.

“A person with dementia is still a person first and foremost and they deserve to be treated with respect like everybody else.

“We all have a responsibility to work towards a society that is dementia friendly, and the best way to do this is to support friends and family living with dementia.”

The new report identifies education, information and awareness as priorities to reduce the stigma of dementia, and asks that governments worldwide implement national dementia plans to increase research into how to address the issue of stigma.

It recommended 10 key measures to specifically help the international community to overcome the stigma of dementia

These include social isolation programs for people with dementia; the formal recognition of the rights of people with dementia and their carers; greater community involvement for people with dementia; education and support for informal and paid carers; an improvement in the quality of care at home and in care homes; an improvement in the dementia training of primary healthcare physicians; further research into the stigma associated with dementia and more.

Dementia and stigma, on home soil

The federal government recently added dementia as its ninth National Health Priority Area (NHPA), enabling greater focus to be placed on reducing the prevalence of the disease, on managing the health needs of those living with the condition and to reduce the risk of people developing dementia.

CEO of Alzheimer’s Australia, Glenn Rees, has previously commended the federal government for making dementia a NHPA, but he believes Australia still has a long way to go to combat the stigma associated with the disease.

“As well as a national awareness campaign, we need to look at funding programs, such as leisure and access activities that recognise the retained abilities of people with dementia,” Mr Rees said.

“The government and their commitment to tackling dementia through the Living Longer. Living Better aged care reform package is a good start, but we all need to work harder at making sure people with dementia, their families and carers are not marginalised, that people with dementia are empowered to self advocate and that they are supported appropriately to help them live with dementia while enjoying the best quality of life possible.”

Newspoll results, released by Eli Lilly in July, found that more than half of those Australians surveyed believed that the symptoms of dementia were a normal part of ageing (read the story about this on AAA)

Nearly one in five said that if a family member had memory loss or confusion they would think it was a natural part of ageing and 10 per cent of people aged 19-34 had never heard of Alzheimer’s disease, the most common form of dementia.
 

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2 Comments

  1. A great article highlighting the report. As a PWD, I certainly hope the organisations who subscribe to improving outcomes for PWD take real notice of it, and start including PWD more as speakers at conferences and forums, and on their Boards.

    Part of the Report’s Recommendations included; “Give people with dementia a voice and let them speak about their experiences in public. They have proved to be powerful spokespeople for Alzheimer Associations. Do not assume that it is not possible in your country. It is important to consider the abilities of the person with dementia you are working with, and think through issues such as transport arrangements for them and what time of day may be best for them. For more tips on involving people with dementia as spokespeople, visit http://www.alz.co.uk/worldreport2012 The voices and needs of people in the middle to later stages of dementia are also important. People in these stages can communicate in a variety of ways and are often misunderstood and undervalued; more education and support is needed for both informal and paid carers and in care home settings. We recommend that every country develops a national Alzheimer’s/Dementia plan and, in large countries, even regional plans. Good examples are available, as well as support from the WHO, ADI and Alzheimer Europe. These national Alzheimer’s/Dementia plans should include initiatives aimed at creating Dementia Friendly Communities.”

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