Dementia frontrunner Japan destigmatises condition, stresses community care

Dementia frontrunner Japan destigmatises condition, stresses community care

When Masahiko Sato was diagnosed at age 51 with early-onset Alzheimer’s, he felt his life was over. A decade later, Sato has a mission: destigmatising a condition with a growing social impact in a country that leads the global aging trend.

“Whether people with dementia can ‘come out’ depends on the values and culture of the community,” said Kumiko Nagata, research director at the Dementia Care Research and Training Centre, Tokyo, adding that attitudes were changing.

Read the whole article and watch the video at:


‘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. Continue reading

Breaking down stigma – research on societal attitudes about dementia

In 2010, Northern Ireland Life and Times (NILT) Survey was conducted in order to influence policy on dementia in Northern Ireland. This report, published in 2011, included a module of questions exploring attitudes and knowledge of dementia.

Critically, this survey has inquired about perceptions, attitudes and awareness of dementia. We know that just under 50 per cent of those who partook in the survey had direct experience of knowing someone who is living with dementia, of which half are a family member. The views reflected by the survey confirm much of what needs to be challenged about attitudes, care and services for people with dementia and the need to address this in public policies and research, as well as in practice through the provision of services.

The survey results highlight the public’s knowledge of dementia (happily, 94% know that it is a disease of the brain), how people describe dementia (90% of respondents said ‘confused’ was the main way they would describe the appearance of someone with dementia), how society thinks about and cares for people with dementia (83% said ‘there comes a time when all you can do for someone with dementia is to keep them clean, healthy and safe’), and views on the effects of dementia over time.

It makes me incredibly sad that around half of the respondents felt that once someone has a diagnosis, they are not longer viewed as a capable, thinking human being. This highlights the point that most people think of people who have dementia as one group – the oldest old who are in the later stages of dementia. They don’t typically think of the younger people with dementia, the people who are still working at jobs or caring for their families, the people who are still writing books and educating others.This viewpoint perpetuates stigma and makes it much more uncomfortable for people with dementia to share their diagnosis with their friends and family. My hope is that this changes in the coming years, that more people with dementia will share their voices and experiences, and that more of the public will realize these are thinking, feeling human beings who are still capable of many things.

It’s an interesting report, you can read it in full here.

Alzheimer’s Association Denmark: 7 tips for how to help a person with dementia

Do you know someone with dementia? Do you have a hard time figuring out how to talk to them or what you can do to help? Are you not sure how to talk to friends about a recent diagnosis of dementia in your family? This article is from the Alzheimer’s Association in Denmark and gives 7 tips on how you can help a person with dementia (and help yourself to learn more about it on the way).

Happy reading and I hope it brings good experiences!

I have made my own translation from Danish, so some of the words may be changed, but the meaning has been preserved. I have also removed the videos, as they are in Danish. Dette indlæg er oprindeligt på dansk, læse det her (og med videoer).

“I love you, but I can’t remember who you are”

7 tips for how to help a person with dementia 

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Breaking stigma: stop saying they are “suffering”!

Yes, let’s stop referring to individuals by their diagnosis or handicaps, let’s stop saying people with dementias (and many other conditions) are “sufferers” or “suffering with the disease.” Let’s stop calling them patients, when they are individuals carrying out their daily lives.

Let’s break stigma associated with Alzheimer’s disease and other dementias by choosing our words more carefully and increasing our understanding of one another. Let’s grow compassion and acceptance through our thoughtful choice of words.

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Film review! “Still Alice”

Still Alice

The film “Still Alice” premiered in Denmark on March 5, 2015. I went to see it the following Sunday. It was a really sunny day, so it was kind of a shame to spend it inside a theatre, but I will say it was so nice to come outside into the sunshine afterwards.

While I have seen that there have been many reviews of the film, I was careful not to read them until I had seen it for myself. I think it’s nice to come in with a fresh set of eyes and to not be influenced by other people’s opinions until after forming some of my own.

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Dementia in the media

The power of words – choose your meaning wisely!

dementia-webpageI am re-blogging the blog I published yesterday for Dementia Alliance International, called Dementia in the media.It began with this:

“As the editor of an international advocacy and support group, of by and for people with dementia, I read or am referred to many articles in the media about dementia. Most of them require a comment from people living with dementia, in order to either re-claim our human rights, to request the same respect offered to everyone else in the community, or to complain about either the misconceptions and myths the articles portray, due to the ignorance of those without dementia, or the biases and prejudices of a few.

The media feels like a an ugly place to be these days, as we are regularly being referred to as sufferers, victims, demented, not all there, fading away, or in this disgraceful instance, we have dementia as a form…

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The Liberation of Growing Old

Stop Stigma: Think before you speak!

I had posted a great article on my Google+ account about a woman who shares her story of actively LIVING with dementia. She wrote books, she gave talks, she even remarried! You can read the article here, and her webpage here. And I highly recommend it.

One of the points she makes in the article is about making it better for people who are diagnosed. She doesn’t necessarily mean making their prognosis better, but how they are accepted into society and respected a humans.

‘I’m really passionate about trying to make it better for other people being diagnosed today,’ she said.

‘I want people to feel brave and I want society to accept us as disabled people amongst us who deserve dignity and respect, not to be shunned and laughed at.

‘There are so many jokes out there about old timers disease and “I’m losing my marbles”. It’s so hurtful. people don’t realise that it’s like saying “I’ve got a touch of cancer today”. It’s a terminal illness that people joke about.’

This really resonated with me. I get frustrated when I hear people comment that “they are old, so they forget a lot,” or that they have “part-timers,” “old-timers,” or another handy phrase to make a joke about their momentary lapse in memory. I am uncomfortable calling them out to their face and saying, “hey, that’s incorrect and offensive.” Sometimes I will say that I work with dementia, but about half the time this is welcomed with, “so you know what I mean, then!” However, I find that if I talk about young-onset dementia, I see a change in people’s faces, when they realize it really isn’t just for “old people” and that it is, in fact, a very serious syndrome.

For people with dementia, it’s every day. They have dementia every single day, and in every single place they go. It’s not a matter of incorrectly counting change once in a while, or forgetting your silverware with lunch one day. Dementia is different from normal age-related memory changes (which do exist, as the brain has more information to search through to recall previously stored information), because the brain is working and aging in a different way than a healthy brain. When people are making fun of dementia, it’s really not funny.

I remember when I was an intern at the World Health Organization in Copenhagen, one of the ladies ahead of me in the lunch line asked me to pass her some silverware that she forgot to pick up, saying “I’m old, you don’t understand yet, but you forget things when you’re old.” She was in her 50s (which is over a decade away from the definition of old). And probably didn’t know that I have a degree in Aging Studies (Gerontology). Or that I was an intern in the Age-Friendly Cities program and was currently writing my PhD on dementia care. But, the point is, she shouldn’t have to know that stuff to realize what she was saying was incorrect, perpetuating stigma about aging, and making folly of dementia.

If we take a little time to think about what we are saying when we talk about memory or dementia or people who we think are “old,” we gain some insight into how we really feel about those topics. We also get a moment to consider if it is respectful and accurate, or if it’s something best left in our thoughts.

“Stop using stigma to raise money for us”

“We too should take a vacation from our caregivers… enjoy the company of other people with dementia…”

It would be my hope that my envisioned Vacation Village would not promote stigma, but would be a place where people with dementia can come and enjoy the company of their families and others while taking a little break from everyday life and enjoying nature.

I have tried to avoid stigmatizing dementia in my ideas for this vacation place – starting with avoiding a name that includes dementia, like Dementia Village or Dementia Vacation. The point, rather, is to make a vacation spot that anyone would enjoy, and is accommodating, so that both the caregivers and the person with dementia can enjoy their holiday.

This is an interesting post on the stigma of dementia and how it is misconstrued and misused in ways that truly don’t benefit people who are living with the syndrome (or their families and caregivers).

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