25 May 2017 | 17.30–19.30 Hotel Intercontinental, 7–9 Chemin Du Petit-Saconnex, Geneva
We are delighted to invite you to attend a special side event chaired by Tania Dussey-Cavassini, Vice-Director General, Ambassador for Global Health, Swiss Federal Office of Public Health and Paola Barbarino, CEO of Alzheimer’s Disease International.
Nearly 50 million people live with dementia worldwide and this number is growing by 9.9 million each year – the equivalent of a new case every 3 seconds. Momentum is beginning to build through collective working on research, policy making and community action to find a cure and effective support for those living with the condition. Global interest in dementia is growing, with comparisons drawn to the early stages of global movements on HIV/Aids and cancer. However, there is still a long way to go.
We believe that this event will be of high importance to those attending the Assembly from around the world and will be an additional opportunity to strengthen implementation of this key Action Plan, and the development of national plans on dementia globally.
The provisional list of speakers include Dr. Naoko Yamamoto, the Assistant Minister for Global Health and Health Industry Strategy from Japan, the Minister of Health from Indonesia, Dr Shekhar Saxena or Dr Tarun Dua from the WHO, Amy Little from GAADA and Kate Swaffer representing Dementia Alliance International. The full program is still being finalised, but it will be a full program with a lively Q & A session at the end.
The last few years, in particular for people with dementia representing themselves and since the WHO First Ministerial Conference on Dementia in March 2015, the pace of the activity towards a human rights based approach to dementia that also includes full access to the CRPD and other Conventions has been a major focus of DAI. Our newly appointed Human Rights Ambassador Professor Peter Mittler CBE presented last October in Geneva at the Social Forum, and his speech then is as relevant today as it was then. Next week, at the World Health Assembly being held at the WHO in Geneva, the Global Action Plan for Dementia ia expected to be voted in. For now, read Peter’s speech notes from last October as they explain well why people with dementia are pursuing disability rights. Thank you Peter.
Social Forum, October 3-4, 2016
Side Event: Under-represented groups of persons with disabilities
By Professor Peter Mittler CBE, University of Manchester and Human rights Advisor to Dementia Alliance International
“Thank you for giving me this opportunity to speak about the human rights of people living with dementia.
I’m the Human Rights Advisor to Dementia Alliance International and I’m here because 50 million people with dementia world-wide have been excluded from the CRPD by governments legally committed to it through ratification.
DAI was created in 2014 for the main purpose of achieving our human rights through the CRPD. All of us have a medical diagnosis of dementia. We now have 2,500 members in 38 countries and communicate through the internet and social media, run eight weekly support groups in different time zones and provide seminars led by our members or by leading professionals, researchers and policy makers.
Although people with dementia are indisputably included in the characterisation of disability in CRPD Article 1, governments are not including them in their implementation of the Convention. This may not be intentional but reflects a wide-spread perception that dementia is an illness, not a disability and therefore the responsibility of Ministries of Health rather than across government. This could be considered as an example of systemic discrimination against millions of people.
Furthermore, several countries and two regions -Europe and Latin America- have launched dementia strategies which don’t appear to have drawn on CRPD Principles and Articles.
WHO takes the view that dementia is the biggest Public Health challenge facing every government and makes fuller use of CRPD than any other UN agency. Its 2014-2021 Global Disability Action Plan fully reflects CRPD Principles and Articles, as do the revised Guidelines for Community-Based Rehabilitation – clearly highly relevant to people with dementia in Low and Middle Income Countries. Its new Quality Rights Indicators are also built on five relevant CRPD Articles.
People with dementia are already being Left Behind in the 2030 SDGs, now being renamed Action 2030. This reflects the absence of the dementia world from the UN global consultations which resulted in the commitment to Leave No One Behind.
The fact that we all live longer than our grandparents means that the number of people with dementia will treble by 2050. The rate of increase will be greatest in Low and Middle Countries, most of which have very limited services, not even diagnosis.
People with dementia face one form of stigma or another in every country. They have been accused of witchcraft and bringing shame on their families, chained to trees and even burned alive. Even in China, India and other countries, the tradition of respect and provision for older people is being eroded by younger people flocking to cities in search of work.
AN OECD study of 37 High Income Countries has concluded that “dementia receives the worst care in the developed world”.
People with dementia don’t like being called ‘sufferers’ but they do suffer from poor services and lack of support to enable them to continue to participate, as they have done all their lives before diagnosis. They also suffer from the social isolation that follows a diagnosis of dementia when friends and family members stop visiting because ‘they don’t know what to say, perhaps out of fear that they too might be diagnosed with dementia or that they might have to support their relative or provide financial support for residential care.
Politicians, the press and even top level researchers and the leaders of some national organisations working for people with dementia talk about ‘demographic time-bombs’, ‘tsunamis’, ‘disasters waiting to happen’ and a ‘world without dementia’. Would anyone today talk about ‘a world without Down’s Syndrome’?
Dementia Alliance International has gone from strength in the last two years not only because new members are joining every week, but because we have taken our demand for human rights to a high level.
In March 2015 our co-chair and founder Kate Swaffer, went to the World Health Organization’s first Ministerial Conference on dementia to make three demands to WHO and 80 Health Ministers at the Opening Ceremony: full and equal access to CRPD for people with dementia; post-diagnostic support and for research on care to be on a par with research on cure.
The following year, Alzheimer’s Disease International adopted a human rights policy which includes access to CRPD and other Conventions for its 85 national societies, in cooperation with DAI. During the Social Forum, we could identify with the experience of other international, regional and regional associations of disabled persons. Words common to all of us included stigma; multiple discrimination (in our case on grounds of old age and gender) invisible disabilities; reasonable accommodation. For people with dementia, being supported to live for as long as possible in the community is particularly important: that’s why we contributed to the UN General Day of Discussion on Article 19 earlier this year.
So thank you for inviting me because until recently, disability and dementia appeared to be on two different planets, each aware of human beings on the other planet but unable to communicate. In the last year, people living with dementia have attended UN meetings, met the CRPD Committee, taken part in the annual Conference of States Parties and this Social Forum.
We want to be part of the global disability movement because we share many of the obstacles to inclusion.”
Ken Clasper is a friend and member of DAI, who has also been a long time advocate for people with dementia in the UK, and who is an Ambassador and Dementia Advocate with the Lewy Body Society. He is diagnosed as having Younger Onset Lewy Body Dementia, and has “learned to live a new life doing things to help others with the illness”. Ken also says he is “honoured to be a member of Dementia Alliance International”.
His blog yesterday proudly announced the launch of a new Dementia Working Group, and we wish to congratulate the Alzheimers Society UK for supporting this group, as well as the inaugural members of this group. We are thrilled to be able to announce it here as well, as it adds to the every growing list of Dementia Working or Advisory Groups around the world. We are honoured Ken is a member of DAI, and extremely proud to know him, and many of the members of this exciting new Dementia Working Group many who are also members of DAI, Chris Roberts having also been a past Board member.
The image below is from Ken’s website where he states: “We have one member from each of the Alzheimer’s Societies 12 Regions”, and who are listed below. Congratulations to you all.
Members (not in order of appearance in the photograph)
Chris Roberts, North Wales, and Linda Willis, South Wales
Danny Brown and Liz Cunningham, Northern Ireland
Ken Clasper, North East England
Joy Watson, North West England
Wendy Mitchell, Yorkshire and Humberside
Shelagh Robinson, West Midlands
Alex Preston, East Midlands
Peter White, East England
Hilary Doxford, South West England
Keith Oliver, South East England
Dianne Campbell, London
See the list below of the growing local, regional national or global groups of people with dementia.
2000: Dementia Advocacy and Support Network International (DASNI) http://www.dasninternational.org
This was the first group ever to be set up by people with dementia, but membership was not exclusive to people wit dementia, and the membership base is 2/3 care partners. Apart from a website, there are no specific services, but it is important to know this group of people, of whom four founding members are still active advocates, and all are members is Dementia Alliance International includes Christine Bryden.
2013: Japan Dementia Working Group (JDWG); unable to find a website for this group; I also learned at ADI Kyoto there are a number of regional Working Groups for people with dementia in Japan
2014: Dementia Alliance International (DAI) – www.infodai.org and www.joindai.org
Established on 1 January 2014 DAI is the only global advocacy and support group, of, by and for people with dementia, and the global voice of people with dementia. DAI now represents > 3500 members in 39 countries, and is a registered charity in the USA; membership is exclusive to people with a medically confirmed diagnosis of dementia.
DAI is in a strategic but autonomous partnership with Alzheimer’s Disease International, also their major sponsor. It provides free membership, free online support groups, cafes and other services, including educational webinars for the whole dementia community.
2014: Southern Dementia Advisory Group (the only working group to have been in a DFC initiative that has been recognised by the WHO, in 2016) http://www.southerndag.org
2014: Ontario Dementia Advisory Group (ODAG) http://www.odag.ca
This was started as a completely autonomous group by a regional group of people with dementia, and was not funded, restricted or informed by Alzheimer’s Canada, although I believe it is soon to become a national group supported by Alzheimer’s Canada.
The importance of good food for a person living with dementia
By Peter Morgan-Jones
We are continuing our series of daily blogs for Dementia Awareness Week UK Day, 2, and are thrilled to have a blog by Executive Chef and Food Ambassador Peter Morgan-Jones, from Australia, who as been working with Australian icon, Maggie Beer on improving food in residential aged care (nursing homes). Thank you Peter for this wonderful blog.
Good wholesome food is the essential tool for everybody and especially needed for an older person and people living with dementia.
We know that people living with dementia do benefit enormously from good unadulterated food. What is good for the heart is also good for the brain. We also know that ensuring that smaller meals are served and offered more frequent can result in a positive dining experience by a person living with dementia and can also be less overwhelming for the diner.
Good smells from cooking a meal are one of the greatest tools and prompts for stimulating and appetite.
Understanding the needs and preferences of a person’s mealtime experience is a fundamental tool also in ensuring a positive mealtime experience.
Professor Charles Spence is an experimental Psychologist at Oxford University and works very closely in collaboration with Heston Blumenthal on the science of eating and engaging the senses.
With the publication of our two books ‘don’t give me eggs that bounce “and ‘It’s all about the food not the fork” we have touched on the importance of engaging all the senses at mealtimes for a person living with dementia and how they can be great tools in enhancing a positive dining experience of good food.
Eating is probably one of the few daily activities in which we harness all of our senses at the same time. Smell, taste, sound, touch and sight all contribute to the enjoyment of mealtimes and to engaging a person who is frail or living with dementia in them.
Taste and visual presentation are hugely important, of course, but we should not forget that the way food smells, whether it is eaten in a noisy or calm environment, and the feel of things like cutlery and crockery are well worth considering too.
I have cooked for the royal family and am now the executive chef for one of Australia’s leading care providers. To be able to use my food knowledge and love of cooking to improve the quality of life of older people has been an amazing opportunity. In my career I have learned that the appreciation of food depends not just on flavour (vital though that is!) but on a great deal besides.
Our appreciation of flavours actually comes from our sense of smell. The human brain can register 10,000 different odours at any one time and this process starts before we are even born. It is these triggers that are so important, particularly for people with dementia. A long forgotten smell – such as the aroma of a sweet shop or baking bread – could awaken appetite in someone who shows little interest in food.
A fascinating fact about the significance of smell is that several catering establishments using the virtually smell-free cook-chill system to prepare food have started installing “scent clocks” that produce almond aromas at mealtimes to compensate for the lack of smell emanating from the food.
It ought to go without saying that taste plays a crucial role in the dining experience – but, unfortunately, I feel it needs to be restated. The five taste sensations are sweet, salty, bitter, and sour and “umami,” a Japanese loan word to describe savoury things / a natural MSG flavour enhancer. Sweet taste is a pleasurable sensation, salty taste improves the flavour of food and bitter taste is a primeval protection against poisonous and inedible foods. Sour taste aids digestion and umami taste arises from natural monosodium glutamate (MSG), which is found in the likes of tomato, Parmesan cheese and dried seaweed, to name a few. There is a possible sixth taste which is still being researched: the ability to taste fat.
Getting to know a resident’s preferences and taste palette can help improve their dining experience and increase the enjoyment they get out of their food. We know that tastes can diminish and change with ageing, and even more so with dementia. At thirty years old a person has 245 tastebuds but this falls to about 80 by the time they reach seventy years old.
Sound often contributes negatively to the dining experience in the form of distracting noises. Ambient noise should be kept to a minimum at mealtimes. The link between sound and food is the subject of an emerging field of research called “neurogastronomy,” which explores the ways in which music and other background sounds can stimulate (or not) the pleasure of eating.
If you need convincing, next time you are on an aeroplane bring some noise cancelling earphones. Start eating your meal with the headphones on and then, midway through the meal, remove them and continue eating. You will find that the noise of the plane affects the “flavour” of the food.
The feel of the food we eat and the cutlery and crockery we use to eat it influence the way we receive it. For example, if you have a barbeque and serve the meal on a paper plate with a plastic knife and fork, the meal does not taste the same as it would when served on china with a metal knife and fork.
Visual presentation is a paramount factor in whetting the appetite. When we look at food our eyes take in the colour, gloss, physical form and the mode of presentation, such as the crockery and cutlery. Other sight factors are good lighting and distinguishable plates, like those with borders that “frame” the food and draw the diner’s eye to them.
In fact, sight and smell are the two predominant senses that coax the brain into liking the meal about to be consumed. Presentation has a key role in making it look appetising – “we eat with our eyes”.
Appetite begins in the mind – poorly presented food stops people feeling hungry. How food is plated, or arranged on the plate and garnished, figures deeply in one’s reaction to it. It even affects how we think the food tastes and is key to gourmet cooking.
Painting, balance and colour
A plate of food is like a painting, and the rim of the plate is the frame. This does not mean that you have to spend as much time arranging the plate as Rembrandt did painting a portrait, but it does mean that you need to think a little like an artist and strive for a pleasing arrangement.
Select foods and garnishes that offer variety and contrast, while at the same time avoiding combinations that are awkward or jarring. Two or three colours on a plate are usually more interesting than just one.
Visualise the combination: poached chicken breast with cream sauce, mashed potatoes and steamed cauliflower. Not too good? Or how about roast chicken, chips and sweetcorn? Not quite so bad, but still a little monotonous. Now picture roasted red peppers, grilled stuffed chicken breasts on herbed orzo and a drizzle of green pesto. Visually more appealing!
Many hot foods, especially meats, poultry and fish, have little colour other than shades of brown, gold or white. It helps to select vegetables or accompaniments that add colour interest – one reason why green vegetables are so popular.
Shapes, textures and flavours
Another food presentation tip is to plan for a variety of shapes and forms. For example, you probably do not want to serve Brussels sprouts with meatballs and new potatoes. Green beans and mashed potatoes might be better choices for accompaniments. Cutting vegetables into different shapes gives you great flexibility. Carrots, for example, which can be cut into dice, rounds or sticks (batons, julienne), can be adapted to nearly any plate.
Though not usually included in food presentation tip lists because they are not strictly visual considerations, textures are as important in plating as in menu planning. Good balance involves a variety of textures on the plate. Perhaps the most common error, unless it is a dietary requirement, is serving too many soft or pureed foods such as baked salmon loaf with whipped potatoes and pureed peas. Of course, you cannot see flavours either, but they are one more factor you must consider when balancing the various characteristics of foods on the plate.
Portion sizes and temperature
Match portion sizes and plates. Too small a plate makes for an overcrowded, jumbled, messy appearance, but too large a plate may make the portions look skimpy. And balance the portion sizes of the various items on the plate: one item, generally a meat, poultry, or fish preparation, is usually considered the main item on the plate. It is the centre of attention and is larger than the accompaniments.
Don’t let the main item get lost amid excessive garnish and huge portions of vegetable and starch items. Where there is no main item, as in some vegetable plates, strive for a logical balance of portions.
My final tip would be to serve hot foods hot and cold foods cold! Hot foods should be on hot plates and cold foods on cold plates. Your arrangement of beautiful food will not make much of a final impression if you forget this basic rule.
Bio: Peter Morgan-Jones is executive chef and food ambassador for HammondCare. His culinary highlights include catering for Buckingham Palace garden parties with 8,000 guests, managing 120 chefs on-site for the Wimbledon tennis championships and working in some of the most iconic restaurants in Sydney, Australia. He is the author of two dementia specific cookbooks, don’t give me eggs that bounce and the newly published It’s all about the food not the fork!
We are starting Dementia Awareness Week UK, with a presentation by DAI co-founder, John Sandbom on the value of Peer-to-peer support groups. If you live in the UK, and want to get involved there this week, follow the link in the image here.
As part of the support the DAI offers its members, it has online support groups for members that meet from around the world.
During a presentation made at ADI2016, Eileen Taylor, a current board member and the secretary of DAI said:
“As I said earlier, from a personal perspective, since finding and joining DAI, and being involved as I am, has certainly been a very empowering experience, to belong to such a group. As you can see and hear, I’m talking to you today, and have recently become the DAI secretary, and co-host, of two of the online support groups. So I thank DAI, for having faith in me, and giving me the opportunity to participate in their work.”
Johns presentation: “DAI’s Peer to peer support groups”
Dementia Alliance International (DAI is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.
Membership of Dementia Alliance International is free, and open to anyone with a diagnosis of any type of dementia. Or you can subscribe to our newsletter or weekly blog.
DAI members and many others with dementia had a very positive time in Kyoto for the ADI 32nd conference recently. We all worked hard to ensure ALL people with dementia AND their families in ALL countries get better support, and DAI provided a platform via its workshop for many to have the chance to speak, who were not on the program.
As always, the deep bonds that the experience of being diagnosed with any type of a dementia, or supporting someone with dementia, brought people together in ways that are difficult to describe. It is like being in a bubble of love and deep understanding, that others cannot fully understand, and even though as individuals we sometimes have differences of opinions, we are all facing the same things. Even without dementia, we are all going to die, so we are surely better off to just get on and work together anyway.
One of the valuable lessons DAI is learning, is that when a member passes on, or deteriorates to the point of not being able to be an active member, or moves on to do their own thing, we have many others willing to take on roles to support the global community of people with dementia and our local, national and global advocacy efforts. Sadly, because there is a new person being diagnosed with dementia somewhere in the world every 3.2 seconds, this will always be the case!
DAI’s workshop had more than 280 people in attendance, and about 13 people with dementia representing 6 or 7 countries, some with their care partners, presented at this event. The one thing that became very clear, as they were all sitting on the stage, is that no one could tell the difference between those of us diagnosed, or our care partners, in terms of who looked like they had dementia. The other things it highlighted as each person or couple told their stories, is that dementia effects everyone differently, and what is a good life to one person is different to another. the late Professor Tom Kitwood was right in talking in terms of person centred care, even though this is generally still rhetoric in care settings. The workshop panel Q & A session was also very interesting.
Informal feedback we received at the conference from many, was our workshop, and the one run by the Japan Dementia Working Group the next day, where I think they may have had more than 300 people attend, were the two best sessions of the conference. We are keen to see the formal feedback from the ADI survey that has just been sent to delegates.
We have no idea how to help 50 million people, but ONE step, ONE small action, EVERY day, EVERY week, EVERY month, one year at a time is what individuals with dementia, Working groups of people with dementia, Advocacy organisations, and DAI are all trying to do. Together, we are so much stronger, and the collective voices of people living with a diagnosis of dementia have also become louder, and perhaps much more demanding than ever before.
The conference in Japan was made inspirational by the sheer volume of people with dementia, and the energy and charisma of the members of the The Japan Dementia Working Group. Their friendship and hospitality was incredible, a was that of their supporters. They are also wanting to join DAI, collaborate with us, and work on the global human rights, as well as human rights in Japan.
After the conference ended, DAI also went to Osaka, and Christine Bryden, James McKillop, and I, and others, were there as part of a panel discussing dementia, and being filmed to raise awareness in Japan. Christine gave a keynote speech of what she has seen in her 22 years of living with dementia, and the changes in Japan since her first visit there. Christine started the advocacy work in Japan, and people with dementia are definitely running with their own advocacy efforts now. It is incredible to see the ripple effect now of the work of so many people, started by a few long before many of us were diagnosed or knew anything about dementia.
DAI thanks the early advocates, as without them standing up and demanding a voice and a seat at the table, we would not be where we are today.
As I wrote on Facebook after the conference, one young woman from Indonesia who was at the ADI conference told mentioned to me and John Sandblom (and his wife Cindy, her first time to an ADI conference) that is was because of meeting and listening to us and our speeches last year in Budapest, that she has decided to set up a global group for YOUNG carers. WOW, how exciting is that! DAI is going to work with her, to support that effort. This has been a dream of many members at DAI who live with YOD, and have seen our children face with with us, with little or no support.
There is much more to report, especially on human rights, but also we will share many of the presentations given by people with dementia in Kyoto once we have had some time to format them, including the DAI workshop, as well as adding a photo collage of our time together.
THANK YOU TO THE PEOPLE OF JAPAN FOR YOUR CORDIAL HOSPITALITY, YOUR FRIENDSHIP AND LOVE, AND FOR CARING AND SUPPORTING US ALL SO VERY GENEROUSLY. MANY OF US HAVE LEFT A PART OF OUR HEART WITH YOU ALL.
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 Taiwan 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 Taiwan Dementia Working Group.
People with dementia who attended the session at the Taipei 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 Taiwan 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.
My schedule was incredibly busy…
Day 1: Depart Adelaide 2pm on April 19, and arrive in Taipei 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 in Taipei.
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 Taipei 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 the Taiwan Alzheimer’s Disease Association. 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 Taipei
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 Taiwan.
The global advocacy movement of people with dementia speaking out, and the many books, articles, and blogs or stories written by people with dementia globally certainly highlight this. Those of us who appear publicly as speakers or are involved in our communities in other ways and who appear to be ‘living well with dementia’ but who have also been formally diagnosed with dementia, are often being accused of faking having dementia…
This has become systemic, and could easily be considered a form of bullying, and it must stop. Ignorance is no longer an excuse. One of DAI’s new board members Brian Le Blanc @TheALZ_Guy, has written two powerful blog posts about his own personal experience of this recently, and which we are sharing here today as we lead up to the ADI Kyoto conference next week, as a reminder that whilst people are being diagnosed earlier in the disease process of dementia, it is completely logical they will not act or look as if they are in the late stages of the disease at the time of their diagnosis.
“Imagine my amazement when through recent conversations with some close acquaintances, I was told that there are individuals who think I am FAKING my Alzheimer’s Disease. Yeah, I know, right?
First off, HOW IN THE HELL DO YOU FAKE ALZHEIMER’S DISEASE???
I’ve had brain scans. Did I manipulate them by turning my brain off, not thinking anything while in the scanner?
I’ve been diagnosed, not once, not twice, not thrice, but 4 freakin’ times
by a Neurologist, a Neuropsychiatrist, and two Neuropsychologists (appointed by the Social Security Administration, who by the way, declines benefits until no stone is unturned). Did I fake not remembering how to draw a clock or another type of shape? Did I fake remembering the 4 words I was told 5 minutes ago?
Do I fake every day not remembering things from 1 minute, 1 hour or 1 day ago
I’ve had my driving privileges taken away by my Dr. for it was determined I no longer have the cognitive abilities or proper reaction time to operate a vehicle. Did I fake that too?”
‘In general, the term disability is often used to describe an ongoing physical challenge. This could be a bump in life that can be well managed or a mountain that creates serious changes and loss. Either way, this term should not be used to describe a person as weaker or lesser than anyone else! Every person has a purpose, special uniqueness, and value, no matter what hurdles they may face.
In addition, just because a person has a disability, does not mean they are disabled. Many living with these challenges are still fully active in their work, families, sports or hobbies. Some with disabilities are able to work full or part time but struggle to get through their day, with little or no energy for other things. Others are unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities and/or need assistance with their care.'”
Finally, if you have not watched this DAI Master Class yet, please take the time to do so. You will learn a lot, and hopefully if you have ever accused someone of faking it, it will change your mind and heart.
DAI’s Human Rights Ambassador Professor Peter Mittler CBE wrote a guest blog for Independent Living UK recently.
The following is a portion of this important article “Dementia and human rights”.
“Dementia diagnosis often leads to exclusion
People with dementia have ‘lived independently and been included in the community’ all their lives, but they encounter deep-rooted and systemic obstacles that prevent them from continuing to do so following diagnosis.
Exclusion from the community frequently begins with the first disclosure of a diagnosis of dementia.
Kate Swaffer, Chair and CEO of DAI, uses the term “Prescribed Disengagement®” to characterise the advice that she received to “give up work, give up study, go home and live for the time you’ve got left”. Her husband was told he would soon have to give up work to care for her. Legal capacity and fitness to drive are immediately threatened by a diagnosis of dementia, rather than evaluated by independent assessment of functioning. This can be particularly traumatic for people with Younger Onset Dementia in mid-career and with responsibilities for young children and elderly parents.
Social isolation and stigma
Many people with dementia have described the loneliness and social isolation which they experience when friends and family members stop visiting and neighbours cross the street to avoid meeting them. Their isolation is increased by fear of failure and humiliation in going out.
Dementia has now replaced cancer as the illness most feared by the general public and is the reason why many people hesitate to seek help if they are worried about their memory or cognitive functioning. The stigma surrounding dementia is fuelled not only by the media but by politicians and professionals who refer to dementia as a ‘time bomb’ and commit to a ‘world without dementia’ within a generation.”
As current Chair and CEO of Dementia Alliance International (DAI), I wish to announce that Professor Peter Mittler CBE has stepped aside from his role as Human Rights Advisor to our organisation, to take on an even more important role as the Human Rights Ambassador for both DAI and our strategic partners, Alzheimer’s Disease international (ADI).
We wish to thank Peter sincerely for his incredible passion, expertise and commitment to DAI and to all people living with dementia, in the work we have been doing for the human rights of everyone with dementia, including full access to the Convention of the Rights of Persons with Disabilities (CRPD) and other Conventions, since DAI placed human rights on the global stage in Geneva in March 2015 at the WHO First Ministerial Conference on Dementia.
Peter’s significant contribution to us has been outstanding, and his willingness to share his knowledge with all organisations globally cannot be highlighted enough. We are thrilled that he will continue to work with us in his Ambassador role. We have delayed publishing this post for it to arrive on April 1, 2017 in the UK, where Peter lives, and also to coincide with his birthday on Sunday. Happy birthday Peter.
It has been since that time, that not only have people with dementia become more active in this work, but all Alzheimer’s advocacy organisations and many other individuals or organisations have taken up the baton. The fact that all ADI Council members agreed to this approach at the ADI2016 conference in Budapest last year is a testament to effective collaboration. Since that time, Alzheimer’s Canada has been very actively working towards achieving this.
DAI and ADI are also very lucky to have the support of Mrs. Diane Kingston OBE who takes over the role of DAI Human Rights adviser today.
Diane KingstonOBE (formerly Diane Mulligan) is a UK-based disability rights campaigner. She is Deputy Director of the International Advocacy and Alliances department at CBM, an international Christian development organisation committed to improving the quality of life of people with disabilities in poor communities. In 2012 she became the UK elected member of the Expert Committee for the UNConvention on the Rights of Persons with Disabilities (CRPD). Diane served as an UN Expert for a four-year term, including two years as an elected Vice-Chairperson. From 2007-2011, she was a member of the World Health Organization’s Advisory Board for Community-based Rehabilitation (CBR), and she was the lead author of that organisation’s CBR guidelines component on education. From 2006-2007, she served on the British Medical Association’s Patient Liaison Group and Equal Opportunities Committee, and had advisory input into two publications: Disability in the Medical Profession (2007) and Disability Equality within Healthcare: the role of healthcare professionals (2007). Diane has been supporting DAI’s work for two years.
Dr Nicole Batsch is also supporting ADI and DAI in a consulting role when we are working on joint projects, and has almost 20 years experience developing ageing and dementia programmes across the US and the UK within mostly not-for-profit organisations. Her expertise encompasses many disciplines including developing a literacy programme for seniors, family carer interventions, a hospital-based senior wellness centre, dementia staff training for home care and care homes and initiatives for people with early stage dementia living in the community. One programme, Powerful Tools for Caregivers Online, was internationally disseminated based on its research outcomes and won the 2006 Innovative Excellence award from the Alliance of Work Life Progress. From 2010-2012, Dr Batsch served on the board of directors for the American Society on Aging. In addition, she co-authored the World Alzheimer Report 2012: Overcoming the Stigma of Dementia and was the study author of a survey conducted with over 2000 people with dementia and carers in 54 countries. The ADI report can be found at this link…
We also have new DAI members taking on more of the global human rights work, and we are excited to be able to announce and once again introduce Phyllis Fehr to you. She is a person living with a dementia in Canada, and who has agreed to take on more of the global on human rights work more actively with DAI, on top of her role with ODAG.
Mrs. Phyllis Fehr, a new DAI board member and Vice Chair of the Ontario Dementia Advisory Group who has been actively working on human rights work in Canada, now joins DAI and ADI on the international stage working alongside myself and other DAI members or consultants on the global stage. It is imperative that we pass the baton to more people with dementia, and we are thrilled that Phyllis has joined us globally with this work.
Phyllis was given a working diagnosis of younger-onset Alzheimer’s and Lewy Body dementia when she was 53. At the time she was working full time in the intensive care unit as a registered nurse. Phyllis promotes the abilities of people living with dementia by advocating for people living with this disease both locally and nationally, and now internationally. She advocates change for persons with dementia as an Ontario Dementia Advisory board co-chair with a focus on government policy.
Phyllis recently represented DAI at the United Nations in Geneva on March 20th, together with Dr Nicole Batsch who attended representing ADI, at the first Open Session of the new CRPD Committee. Representatives from civil society and organisations of disabled persons were asked to speak about their priorities for the work of the Committee for the next eight years in the wider context of the UN 2030 Sustainable Development Goals (Action 2030). You can read her full speech in a previous blog here…
Chair, CEO & Co-founder
Dementia Alliance Inernational