- Dementia can affect anyone from any age bracket, cultural background or social standing. Few people living with dementia today ever thought it would come to them. Please consider how you would wish to be treated.
- To be Dementia Friendly is fine, but being Dementia Inclusive is better. Involving us in all aspects of life, so affording us the same Rights that are enjoyed by others.
- Showing love, respect and consideration whatever our level of dementia and however challenging our symptoms may be to you. We remain whole persons. We do not fade away or disappear, we just often become harder to reach, but it’s always worth the effort of doing so.
- At the centre of all plans for us and discussions about us, please remember it is vital that we are part of that dialogue.
Following our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we are continuing with our stories, as we have many more than 30 to share with you.
September was an exceptional month for our members, some whom for the first ime, had been given a voice through these blogs.
Therefore, today, we feature DAI board member and secretary, Eileen Taylor from Australia. Eileen also co hosts the Monday Australian support group. She and her husband Dubhglas are also co founder of a local advocacy group in Brisbane, the Dementia Advocacy and Awareness Team (DAADT) . Thanks Eileen for sharing your story and for all you do for everyone with dementia.
I am still Eileen
Hello, my name is Eileen Taylor. I was diagnosed with Familial Younger Onset Alzheimer in 2009 aged 59. I was the same age my Dad when he was diagnosed with dementia back in the 1980’s. Both he and his brother in the UK died with a diagnosis of Alzheimer’s in 1994.
Back then, Alzheimer’s wasn’t really discussed, and we didn’t know how to recognise the signs. My Dad struggled to focus and sometimes couldn’t remember what happened the day before. His doctor just put this down to being eccentric and told us there was nothing to really worry about.
Throughout his long and distressing struggle with dementia, my Dad regretfully was never told the truth about his illness.
While I am now trying to live well with dementia, it was very different when I was first diagnosed in 2009. Then, I noticed I was becoming a little forgetful, but it was nothing too major. I didn’t really take too much notice until one day I saw a documentary on TV about the genetic link to dementia.
Because of what had happened to my Dad, I thought that I needed to know, so I had a genetic test to find out the truth. Not just for myself, but for my two sons and my grandkids too – I thought they had right to know if the gene was in our family.
At first the doctor didn’t think there was any reason to know, after all I was below the age when most people start to show symptoms. But I pushed for it, and I’m glad I did, because it enabled me to catch it early and to be a part of several clinical trials to find answers.
When the results of my genetic test and other assessments revealed that I did in fact have the gene and had Alzheimer’s, the news was initially “mind-blowing”. I was devastated, it was a “surely not me!” moment. I was only 59. It was the worst thing to happen to me. It was at that moment when I actually felt the pain in my chest after hearing news that broke my heart. On reflection it was like:
“Imagining you wake up one morning and your computer has been switched from a PC to a Mac, and the keyboard is suddenly Azerty. You are now trying to write a paper with that, while your hands are cuffed together, and your head is in a bucket of Jelly.”
Nevertheless, after my diagnosis, I chose to engage in, not give in, but to fight for a cure and to support other people as well as their families living with dementia. I was determined not to remain silent (as what had happened with my Dad) but to speak out and talk to people and help them to understand what it is like to live with dementia.
Parallel to the trials, the Dementia Alliance International (DAI) became my lifeline, an oasis in a sea of medical denial and indifference I had seen from some health professionals. It gave me a voice to speak out and I was accepted unconditionally into the group I joined.
Now, thankfully, I am a part of the DAI Board, serving as their Secretary, Advocate and on-line support group facilitator for the Australian and New Zealand people.
I am also an advocate and co-founder with the Dementia Awareness Advocacy Team (DAAT), as well as an advocate and active participant with Dementia Australia (DA) and serve on several dementia committees.
Doug, my husband has supported and helped me to live positively with my dementia by externalizing it.
I am not the problem, the problem is the problem, and in my case it’s Alzheimer’s dementia.
My dementia externalized is; my “Dark Cloud!” It helps me come to terms, that I am not my Dementia, my Dementia is my Dementia, I am still Eileen.
Eileen Taylor © 2018
DAI’s vision: “A World where people with dementia are fully valued and included.”
On Day 13 of the #DAI #WAM2018 #Hello my name is blog series, we feature DAI member Dennis Frost from near Kiama in NSW. Dennis speaks to us candidly, sharing his story of being diagnosed with a younger onset dementia, and the advice given to give up work, and that he may have a only few or maybe up to 20 years to live! It is a common story, as this series is highlighting.
Dennis also talks about the stigma, and the reactions of others, and that the stigma and often hidden social barriers are often worse then the dementia. He also shares how meeting others with dementia has helped him to live more productively and positively with dementia. Thank yo Dennis. for sharing your story with us.
Dementi Alliance International & Dennis Frost © 2018
DAI’s vision is “A World where people with dementia are fully valued and included.”
On the 5th day of publishing a blog in support of Scotland’s Dementia Awareness Week, we are covering the topic of the literal definition of the word dementia, rather than discussing dementia from a medical perspective.
Following on from their theme of a better word for people with dementia and their families, by making sure nobody faces dementia alone, we hope this topic provides an opportunity to also rethink language, as this impacts the experiences of people with dementia and their families and friends.
A person with dementia in many countries is still seen as someone who has been taken over by Evil Spirits, and educating communities this is not the case is a long and slow process. The word, in English is derived from Latin, meaning madness (see above). It is no wonder four areas in the world have removed the word from their language.
Many say it is not the word dementia that is the real problem, but those people who treat us as if we are ‘mad’ or ‘not all there’. In saying this, it is important to be reminded this viewpoint is usually coming from the perspective of people with dementia who are predominantly white Anglo Saxons from developed countries.
People from non developed countries are more often likely to take the literal meaning more seriously than we do, and find the synonyms such as mental illness, madness, insanity, lunacy and derangement highly offensive, also possibly why the word dementia has already been deleted from four languages.
Kate Swaffer wrote about the word dementia a few years ago, and likened how it felt when first diagnosed to the Dementors in Harry Potter, sucking out her soul. Whilst she held onto that fear, and believed the narrative of others that she was becoming an empty shell, it was certainly very difficult and took some time to see past that fear, and feel and live more positively with the diagnosis.
Many people with dementia now find their way past that period of darkness more quickly, especially through joining the DAI peer to peer support groups or with our one to one mentoring.
Thinking about the definition of the word dementia, interestingly, also relates to the initiatives known as Dementia Friendly Communities and Dementia Friends.
Based on the fact that four countries or regions have deleted the word dementia from their language, and replaced it with what they believe to be more respectful and sensitive terms, it is probably time we also reviewed the terms Dementia Friendly Communities and Dementia Friends as well. You can read our Chair, Kate Swaffers thoughts on this in her blog titled Inclusive Communities. It is surely food for thought.
Dementia Alliance International © 2018
“The Dementia-friendly Kiama Project: The Challenges & successes in improving the dementia-friendly features of a small community and their replicability to other communities”
- Wednesday, May 23, 2018 (USA/CA/UK/EU)
- Thursday, May 24, 2018 (AU/NZ/JP/SGP/TWN)
Dr Lyn Phillipson: NHMRC-ARC Dementia Fellow, School of Health and Society | Faculty of Social Sciences and Australian Health Services Research Institute, University of Wollongong NSW 2522 Australia.
Dennis Frost: Chair Southern Dementia Advisory Group, Member Dementia Australia Dementia Friendly Communities Advisory Group & Dementia Advisory Committee
Nick Guggisberg: Manager Community & Cultural Development, Kiama Municipal Council.
Please note: this is one event, set in a number of different time zones.
You can read more about it on our website under DAI Webinars, or Register now on the Eventbrite page.
Culturally, it is easier to understand someone in Africa or Nigeria believing a person with dementia has been taken over by evil spirits. What is not acceptable, particularly in a developed country, was to discover recently that some Christian Leaders are blaming people with dementia for having the disease, telling them they must be sinners.
Unfortunately, DAI has had many members who have had this experience recently, from countries including the USA, UK and Australia. And whilst not all of our members have any kind of Christian or other Faith or Spiritual beliefs, it is definitely not kind, or true, to tell someone they have dementia because they are sinners.
Thankfully, we also know many Churches are actively working towards welcoming people with dementia, and many are even working towards becoming dementia friendly, which is wonderful, but those who blame us for having dementia becasue ‘we are sinners’ need a lot more than education or awareness…
As a way to support our members, DAI decided to the best solution was to host an online non-denominational Inclusive Christmas Worship Service next week.
It is being held for our DAI members (or indeed, anyone with dementia), and their family and friends. Members will have today received details on how to join via email. We hope this will be the first of many, and are thrilled Jim Spiker from Adelaide has agreed no only to get up early to lead it, but was willing to learn about Zoom!
Jim has been involved in Chaplaincy ministry since 1976. He has worked in schools, industry and workplaces, and for the last 17 years, as an Aged Care Chaplain in South Australia. His theological training was with Churches of Christ and he was involved in part-time parish work alongside his chaplaincy work on several occasions. Jim enjoys reading across a broad range of subjects from Terry Pratchett to Neuroscience and a fair smattering of theology and philosophy. He is keen on environmental work and is an active bird-bander in a local conservation park. Jim and his wife Anne love keeping up with their children and grandchildren and often rely on Facebook to read what they are all doing. The current excitement is getting ready for a dachshund puppy to arrive as his 70th birthday present.
One of my friends, also a DAI member and a long time campaigner Ken Casper from Durham in the UK, has written about spirituality on his blog called How feelings change in dementia. It is an interesting read, and I’ve had many discussions with others either gaining faith, or losing their faith after being diagnosed with dementia. It would be a reallyinteresting topic to study further, if I wasn’t already so busy!
We look forward to seeing our members and their partners, families and friends online other next week or the one after (or both!) at our end of year (non denominational worship service, and our non religious) festive season celebrations. If you are a person with dementia, but not a member of DAI, you and your family ad friends are still welcome to join us by emailing us at [email protected]
Best wishes for a joyous festive season, one and all.
Chair, CEO & Co-founder
Dementia Alliance International
Last week, invited as the Chair and CEO of DAI, and in my role as the Ambassador for Alzheimer’s Disease International in South East Asia , I visited Taipai. The invitation to visit and support TADA was from LiYu Tang, who is the Secretary General of the Taiwan Alzheimer’s Disease Association (TADA) 湯麗玉 台灣失智症協會秘書長. This image was taken on the last day, at the end of the public meeting.
The staff of TADA, and the many others involved in planning this trip were incredibly generous and hospitable hosts, and looked after my BUB and I well, and especially ensured we ate well. The other very important part of this trip was the services of a translator, and on the first meeting, a university professor was able to translate for our meeting which was incredibly helpful, as instead of meeting with only one or two people, about 20 of the staff were also invited.
On the next two days, a beautiful young woman called Victoria Chang was engaged to translate for my sessions, and in one part of the public meeting, I completely forgot I needed her, and spoke for so long it was almost impossible for her to follow! It was incredible to have her support, and her ability to follow me, when I was unable to follow my own notes or slides, made it even more amazing.
The goal for my visit was not specifically to raise awareness of dementia, but partly to empower other people diagnosed with dementia to become advocates, and to work with Taiwan to inform government, policy and services. In the process of my many meetings, the seeds were sewn for the first Dementia Working Group.
People with dementia who attended the session at the Family of Wisdom house, a centre for people with dementia to attend and be involved in many different activities, spoke out for the first time publicly of their own experiences after the session there. The next day, in my final public meeting, a gentleman who had travelled from afar, also spoke up, and has also been invited to become a member of the Dementia Working Group. It is a very exciting time for people with dementia in Taiwan.
My other meetings were with a number of government or city officials, and the President of TADA, and the aim was to not only give them insight of dementia from the inside out, but to discuss ways in which they could change the experience of dementia for those diagnosed, and on ways to collaborate with each other towards a dementia friendly and dementia accessible and enabling Taiwan Provice of China.
My schedule was incredibly busy…
Day 1: Depart Adelaide 2pm on April 19, and arrive on April 20 at 11:30am (sleep – only on the flight as somehow we mixed up the schedule, and arrived a day later than expected!), and check into the YMCA hotel.
Meeting 12.30-1.30pm with Shwu-Feng Tsay Director-General, Department of Nursing and Health Care, Ministry of Health and Welfare, and about 20 of their staff.
Day 2: Pick up at 8am
Meeting 1: 9-10am – Chi-Hung Lin, Commissioner, Department of Health, New Taipei City Government, and a number of his staff.
Meeting 2: 11.30am-12.30pm – Li-Min Hsu, Commissioner, Department of Social Welfare, Taipei City Government, and a number of staff
Meeting 3: 2-4pm – held at the Family of Wisdom, a relaxed afternoon tea and presentation to family, staff and people living with dementia. I was welcomed and thanked by Li-Yu Tang, the Secretary General of
TADA. My translator Victoria Change learned here how I can no longer follow my own notes, so it was excellent preparation for her for the public meeting!
Day 3: Pick up at 8.50am held at The Home of Christ
Press conference, 9.30-10.00am
Welcome and introduction by LiYu Tang
Presentation by Te-Jen Lai, President of TADA
Presentation by Kate Swaffer: Human rights of people with dementia
Presentation by Yu-Chin Wu, Legislator
Presentation by Hui-Jiuan Chien, Director General, Department of Social and Family Affairs Administration, Ministry of Health and Welfare
Speech to the public, 10-11:30am with Facebook live broadcasting
Presentation by Kate Swaffer: Living Beyond Dementia
Question from the audience, Kate responds (with the support of Victoria, the incredible translator!)
Presentation by Zi-Long Ku, the Commissioner of Department of Social Welfare of Taoyuan City Government
Closing by Te-Jen Lai, President of TADA
It was a very positive, but also very tiring few days, and I was honoured and deeply humbled by these wonderful people, in particular this living with dementia who found the courage to speak out publicly for the first time. Thank you.
Chair, CEO and Co-founder
Dementia Alliance International
Ps. I have added a collage of photographs of the events below. Our next blog, will be about the ADI conference in Kyoto, and brining DAI to Japan!
“Patient care is more than just healing — it’s building a connection that encompasses mind, body and soul.
If you could stand in someone else’s shoes . . . hear what they hear. See what they see. Feel what they feel. Would you treat them differently?”
CEO Toby Cosgrove, MD, shared this video, titled “Empathy,” with the Cleveland Clinic staff during his 2012 State of the Clinic address on Feb. 27, 2013. Published on February 27, 2013.
Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has. (Margaret Mead)
Dementia Alliance International is today launching the first edition of our conference guidelines based on feedback from people with dementia and family care partners since 2012.
Of course, it was not possible to receive feedback from the more than 47 million people currently diagnosed with dementia, but we did engage with hundreds of people from more than 12 countries.
Your feedback is important, and if you have ways in which the next edition of this document could be improved, we would appreciate hearing from you.
“Because members of Dementia Alliance International (DAI) have a unique perspective on conferences we decided to assemble responses from post-event informal email surveys of the past four years to see how people with demen a and care partners feel about the access, support, and enablement provided at professional mee ngs of Alzheimer’s Disease Interna onal (ADI) and other conferences or events.
In other words, we asked if such events are dementia friendly, accessible, and accommoda ng for people of all ages and disabilities.”
You can download the full report here supporting-and-accommodating-people-with-dementia-at-conferences-and-other-events_2016, or email us for printed copies at [email protected]
We have attempted to shared as many #RememberMe stories as possible for World Alzheimer’s Month 2016, all either highlighting some very personal experiences of living with dementia, or some of them about some of the brilliant local, regional, national or worldwide advocacy some members are involved in.
Whether it is global, or simply helping the person next door, it is important work. Sharing a personal story via a blog, or at you local town hall or church, is just as important as making a video thy is shared more publicly. It is not a competition of who is doing more, or of the best.
There are simply not enough days in World Alzheimer’s Month to share them all, which also means we have many members stories to continue sharing over the next few months! What we did was to sent out messages to members to send in their stories, and the ones we have shared this month are simply from those members who responded. We have not even been able to add them all during September, but will endeavour to do so over the next few weeks.
That does not mean, of course, that there are not many other brilliant stories of excellent advocacy to share. Less than 5 years ago, there were not so many people with dementia actively working so publicly as advocates; today, we could (if we had the funds to employ someone!), write a daily blog every single day of the year, as so many are all over the globe are now doing wonderful things.
People with dementia have been sharing their own stories, in their own ways, of ‘Living with dementia’ for some time now. Each person’s way of raising awareness of dementia is important, whether it is a blog here or elsewhere, an article in a magazine, an event of some kind, a documentary or at a conference.
And all of these stories or advocacy work should be shared widely; this is in part what advocacy means.
We all have really important issues including reactions of close family and friends, coping with disability due to dementia, and even issues such as stigma, isolation, loneliness and discrimination to share, but also there are many stories of living well with dementia, in spite of it. These are equally as important, and just as important, are the events which may have limited or broad outreach, as raising awareness is.
So to end our series of daily blogs for #WAM2016 #DAM2016, we are highlighting a few things our members and others have been up to this month.
Wendy Mitchell, Jennifer Bute, Chris Roberts, Keith Oliver, Larry Gardiner and others in the UK have been involved in a documentary being made for Japan out living with dementia. Wendy lives in York and writes a great blog, including this one about having the Japanese film crew in her home recently. DEEP and YoungDementiaUK have been very include wiht a lot of activities this month as well, including hosting a conference.
There have been so many conferences in so many parts of the world this year for #WAM, we would need to write a book to cover them all. Nigeria perhaps was the most important one of all, as the less developed countries are needing so much more support to raise awareness than the developed countries; in fact, even for people to get a diagnosis is a major concern for them!
Chris Roberts and his wife Jayne and daughter Kate from Wales had a BBC documentary made about their story of dealing with dementia, and it was great news to read on Facebook it has been picked up by an agency for global distribution. Chris has also been nominated as a finalist in the National Dementia Care Awards and we wish hm luck again this year. You can view Chris’s documentary here…
Other members have been busy as well, and we celebrate again the prestigious Inaugural Richard Taylor Memorial Advocates Award won by Mick Carmody this year.
Some of our Aussie members such as Eileen Taylor and John Quinn and their care partners have been busy including working on a Dementia Friendly Community project. You can see a video of John Quinn talking about living with dementia here. Edie Mayhew and her partner Anne Tudor have also been very busy in Ballarat working on a campaign in their home town of Ballarat called Bigger Hearts.
It is not possible to cover everyone’s stories or activities today, and if we headed to America and Canada to give a preview here today, it would take too long to write, let alone read!
Susan Suchan though, has been involved in a documentary of her life and what it is like having dementia, and in particular living with the condition known as Primary Progressive Aphasia.
In our final blog for World Alzheimer’s Month 2016, we apologise to those we have not (yet) recognised for their advocacy or other efforts, but we hope you will think about sending us your stories for future blogs here.
It has been a very busy and productive month all over the world as we collectively raise awareness of “Dementia from the Inside Out”!