When I say I have dementia, there is usually a stigmatized response: “Gee you don’t look sick.” “You are too young to have dementia.” “I’m not good at math either.” “Everyone gets forgetful.”
What I find surprising is that some of these stigmatized responses come from people who know me, have direct contact with me and are recipients of my advocacy work. It is as if they don’t believe I have a disease that has no cure and ultimately will die from. One such person said that I “…can walk and talk so I’m fine.”
What else do I need to do in order for all people to believe me?
Perhaps the better question is why do I feel the need to convince them? And why am I disappointed, hurt and sometimes angry with them that they don’t?
Rest assured I have received a diagnosis of probable Frontemporal dementia. I have been through the gamete in seeing doctors, tests, and been under high-scrutiny. My brain has been picked and prodded at. I’m so sick of it, that I have told Dawn I’m done with doctors and don’t want to see and more. I will do the basic requirements necessary for me to retain my personal insurance. That most likely means a yearly visit to the world renowned brain hospital Baycrest to see the Head, Division of Neurology, Dr. Morris Freedman.
I’m reminded of the apostle “Doubting Thomas” who refused to believe that the resurrected Jesus had appeared to the other apostles until he could see and feel the wounds of Jesus.
Skeptic, why do you not believe I have dementia?
I am unable to show you my diseased neurons that are not firing on all cylinders. I am not alone in this as most people having dementia experience this stigma. I am fortunate in that I have an early diagnosis. This has enabled me to have the time and ability to learn about my diagnosis and prepare accordingly.
Dementia does not mean: I am old and always forgetful.
• am a person
• have a diagnosis of dementia
• have great long-term memory
• struggle with short-term memory
• struggle with making decisions
• struggle with math
• struggle with understanding humour
• struggle with understanding complex movies
• struggle with word finding
• am not as compassionate to others as I once was,
• take a great deal of medication that makes me tired (not lazy), and
• I am loved by many.
Reader, take the time to understand dementia. It doesn’t take long. Educate yourself. I would hate to think that you too are a skeptic.
This meeting was the first of its kind focused on rehabilitation, similar to the First Ministerial Conference on Dementia held in March 2015, where I placed rehabilitation for dementia onto the global stage in my keynote speech. Everyone, including people with dementia have the right to rehabilitation. There were well over 200 people in attendance in the Executive Board room, representing organisations and almost all types or causes of disabilities from all around the world. I’d guess it was the first time dementia has been represented at a special rehabilitation event like this.
After introductions on Day 1 by Dr Krug on the importance of rehabilitation for all, he stated that we all must bring this topic into the political arena, as without change in policy, little will happen. He also talked briefly of the need to fully integrate rehabilitation into health care systems globally.
Following this, we watched a short film, with a very clear and strong message that;
“Everyone must be able to access available, and affordable rehabilitation services.”
I have many pages of notes from the two days, but feel rather than overload (or bore) you, there will be a s series of blogs covering the two day meeting over the next few weeks, commencing with here with Blog #1.
Early on Day 1, we heard three testimonies from people living with disabilities, who, without rehabilitation, would not be living productive and meaningful lives today. These are the notes I took from these powerful testimonies:
Three personal testimonies:
1. Dr Rita Sadana
Rita works at the WHO, discussed why rehabilitation is essential. Cycling was a passion and also how she met her husband – but an accident with a car caused her severe spinal injuries, paralysed her, and caused many other medical problems. Basically, she said, she has been reconstructed, and is lucky to be back at work.
She says to people who tell her she is a miracle, but that it is not a miracle, but mostly due to full and authentic package of rehabilitation!
Family and friends and colleagues also important, but motivation and never give up attitude is what has helped as much as rehab. The result was a ‘new me’ but allowing her to live beyond her paralysis and other critical injuries – without it, she would still be like a robot, unable to walk properly, work, function and have a good life. She chose a holistic path for pain, instead of the addictive drugs; rehab has a huge impact, with immense value. Finally, she stated:
“Rehabilitation gave me a second life worth living.”
2. Dr Gopal Mitra
Works at UNICEF as a program specialist. He became blind in his late 20’s due to an explosion – rehabilitated, but still a very difficult journey. From a small lower SES small town in India, he says he was luckier than many other Indians, which was simply due to care and services being arranged by himself, not the health system. Support of family and friends was CRUCIAL, and even medical doctors do not know what is available; there was a lot os trial and error, and he found out through others living with disabilities, not the health system what was available. It was the only way he achieved, as there are no services. On top of that, all services in India are urban centric, even though most people live in rural communities, not the cities. Also, the quality of services was poor, e.g. given a shorter cane, simply because one for someone tall was not available – causing the chronic backache!
He was told “To forget everything as you are blind now”, and you can do things like basket weaving instead of living your life!! He was very angry and said he wanted to tell them to shove the basket… He was also told it would be 5 years before services, just in case his sight came back – he took out his eye and said, do you think this will grow back!
Things must change – his own experiences of rehabilitation and services was self sought and fought for, and costly. Most with disabilities live in poverty – he was lucky he had funds, and some support from his employer. System structures must be set up to make it affordable for all. Finally, he said, which I thought was the quote for the two days:
“Leaving no one behind, does not mean, leaving almost no one behind!”
3. Ms Cheat Sohka
She is the Executive Director of the Association of Spinal cord injury in Cambodia, which she established in 2012. Ms Sohka became a paraplegic during the civil war in Cambodia; at that time, no rehabilitation, no medical support, and the situation was getting much worse. Her family took her to the rehabilitation camp, and pushed hard for a humanitarian pathway.
She needed her family to earn money to support her rehabilitation and the equipment required, of which none was provided by health system in Cambodia. Finally, she said:
“Rehabilitation taught me to see a future, and that it was possible to continue to live and contribute to society.”
These were indeed three very powerful testimonies, and I have little doubt there will be many people diagnosed with dementia who will, as I did, relate to them. It has almost certainly been the self prescribed rehabilitation and lifestyle changes, that have allowed me to slow the progression of my own dementia.
I was there in my capacity as one of eight co-founders, Chair and CEO of DAI, representing all members of Dementia Alliance International, and in reality, all people with dementia globally. There was no opportunity at the meeting to make a formal statement, although we had the opportunity to respond to three questions prior to the event. You can see our statement here:
As this is Part 1 of a blog series about rehabilitation and dementia, I will mention that there was however, only one opportunity to ask a question which was on Day 2, so I put the DAI sign up and was invited to speak. My question to the panel was this:
“How well will dementia and rehabilitation be focused on and how will we ensure people with dementia receive rehabilitation?”
Dr Shakhar Saxena, the Director of the Department of Mental Health and Substance Abuse at the WHO, answered very positively. He stated that we will all need to wait until the Global Action Plan for Dementia is accepted, but that if it is accepted (we all expect it to be), then he is confident it will be taken seriously. He said the WHO want to start a public campaign to remove the misconceptions around dementia [as DAI has begun], but additionally, the WHO will be collecting information from countries to find out what they are doing, and use the Global Dementia Observatory to pull together the data. Dr Sazena stated clearly the WHO will be relying on DAI to assist with this, as we are proving it can be done, and rehabilitation is very useful to enable us to live good lives for longer, as well as contribute significantly to society.
It is obvious, when the conclusion of the Organisation for Economic Cooperation and Development[i], based on an exhaustive study of the world’s 38 richest countries is that “Dementia receives the worst care in the developed world”, that this is unacceptable.
It now seems clear that rehabilitation and proactive disability support for all newly diagnosed people with dementia has the greatest potential to change that. DAI is showing this by example of its members are living meaningful and significantly productive lives. There is also much emerging evidence showing it is possible to slow down and even reverse cognitive decline in some types of dementia, when diagnosed in the very early stages or at the pre dementia stage. We need to embrace this emerging evidence, or the negative impact to dementia care and our prognosis will be impacted greatly if we don’t.
It is also why we must continue to push for a human rights based approach in aged and dementia care, that includes rehabilitation and active disability support in the same way people would receive after a stroke or other brain injury. This will move us towards improving quality of life and well being for everyone including our families and care partners who support us, not just those with dementia or requiring aged care services.
[i] OECD (2015) Dementia: the OECD Response. Paris: Organisation for Economic Cooperation and Development.
Over the last few weeks and months, I have been watching with interest various matters in the UK, things happening to people with dementia there, that are a lot more than unhelpful. Wendy Mitchell has written a number of excellent blogs on her experiences of being denied Personal Independence Payments (PIP), and I know Chris Roberts and have no doubt many others have also recently had significant issues around similar things. It seems they want us to live as well and as independently as humanly possible, but then when we do, we are not believed we have dementia, and for many, funding is cut, the very thing that is needed to maintain this independence.
Thanks to the Internet and social media, I often connect with professionals who may be able to offer support, and have connected with Rosalind Hughes via Twitter. Obviously, DAI does not endorse people or organisations, but if we feel sharing the services of a particular individual or organisation to our members might be of value, we do so. This blog is one of those times.
Rosalind Hughes is a solicitor and Head of Just Caring Legal. She has worked in the legal profession since 1995 and has become particularly interested in adult social care over the years due to her work at the Citizen’s Advice Bureau.
Having met families who were wrongly paying for substantial care home bills, who are experiencing significant healthcare issues such as Alzheimer’s, or other forms of dementia, cancer and Parkinson’s to name but a few, she felt driven to set up her own specialist firm dedicated to challenging these cases. Rosalind has a great deal of empathy with families who have been wrongly denied access to NHS Continuing Healthcare and seeks refunds of care fees and offers other vital services to complement her work to provide a holistic service. We do not know her fees, but her guest blog below may be able to support some members who run into issues such as the ones Wendy Mitchell is facing.
Possible ways of funding care needs when a family member has Dementia
By Rosalind Hughes, Solicitor and Head of Just Caring Legal
“Recognising that the care needs of a family member with dementia are more than family and friends alone can manage can be hard. Finding and affording a way of meeting those needs so they can continue to live as full a life as possible can be just as tough.
Many people don’t realise that there is full NHS funding available for care and nursing home fees where an adult needs ongoing support outside hospital as a result of disability, accident or illness. This funding, called NHS Continuing Healthcare is not financially means-tested and is managed and distributed locally by NHS Clinical Commissioning Groups (CCGs).
However, access to NHS Continuing Healthcare funding can be a particular struggle for people suffering from dementia. Some are lucky enough to be found eligible, while others with similar levels of need have to fund their own care or rely on local authority funding, which is means-tested and increasingly relies on having to be “topped up” and paid for by by third-parties, sometimes to the tune of hundreds of pounds a week.
Why this lottery? It is mainly because the criteria for assessing NHS Continuing Healthcare eligibility, which hinges on the person having care needs arising from a “primary health need”, leaves too much room for interpretation. While the National Framework for NHS Continuing Healthcare and NHS funded nursing care has been in place since 2007 to give guidance to CCGs, in reality there is very little consistency in decision-making. Also, the complexity means many people struggle to understand (and are often not fully informed) whether their loved ones are entitled to NHS Continuing Healthcare.
A recent report from the Continuing Healthcare Alliance (which counts Dementia UK, the Alzheimer’s Society and Age UK among its members) concluded that the NHS Continuing Healthcare system is failing people across the country. Entitled Continuing to Care?, the report describes how many people are being unfairly denied this desperately needed support. And how even those who are granted NHS Continuing Healthcare funding are often given inadequate care packages that don’t meet their needs.
The National Framework makes clear that eligibility for NHS CHC is not dependent on a particular disease, diagnosis or condition. It is based purely on establishing a ‘primary health need’ and a full assessment of the nature, complexity, intensity and unpredictability of someone’s overall care needs.
Yet the Continuing Healthcare Alliance found that people with Dementia are regularly incorrectly denied NHS Continuing Healthcare on the grounds that their care needs are a “routine” part of their condition and its progression and therefore outside the scope of NHS Continuing Healthcare. This can be incredibly distressing and frustrating for families and loved ones who believe that their loved ones actually do meet the eligibility criteria.
The National Framework also makes it clear that just because needs are being ‘well-managed,’ this does not mean they are no longer a factor and should not be marginalised. Nevertheless, the Continuing Healthcare Alliance reports people with dementia having their NHS Continuing Healthcare withdrawn because their condition has “improved or stabilised”, even where this is a reversible phenomenon purely down to the skilled interventions of trained carers.
The report concludes that many decisions on NHS Continuing Healthcare are budget-led rather than needs-based and person-centred as stipulated by the National Framework. There can be conflicts of interest within CCGs, where the person in charge of assessments is also the one charged with hitting savings targets on NHS Continuing Healthcare.
This can make applying for NHS CHC a highly distressing and frustrating experience. On the other hand, it also means in many cases, decisions can be challenged on the basis that the National Framework has not been properly followed. The Times Newspaper recently ran the story of how Vicki Keiller, a 90-year-old woman with dementia, paid nearly £100,000 in care fees when she should have been receiving NHS Continuing Healthcare. She got her money back – but only after a two-year struggle between her determined son Don, a university lecturer, and the local CCG. Success stories are possible with a bit of perseverance and first-class knowledge of the National guidance and benchmark cases such as Coughlan.
So, what advice do we have for people who believe that a loved one with Dementia should be receiving NHS Continuing Healthcare? In a nutshell, it is this.
Don’t believe everything you are told
You may hear that your loved one “won’t be eligible” for NHS CHC because they are not “at death’s door” or “don’t have to be PEG-fed” – or that someone at the CCG has already carried out an assessment and they don’t qualify. But there are rules about the assessment process which the NHS has to follow, and these include carrying out an initial checklist to decide if an NHS CHC assessment is appropriate, when asked to by the family. If they do not comply you can challenge this.
Keep meticulous dated records of care needs
When challenging an NHS CHC decision, evidence of care needs is crucial and the family have a unique perspective. Care home or hospital/medical records sometimes omit vital relevant information so check them regularly to make sure they are accurate, complete and up to date. Keep your own detailed journal charting your loved one’s condition and needs, especially (not solely) in the 12 vital NHS CHC “domains” – a copy of these can be downloaded here. Cross reference this with the care records to ensure they present a true and accurate picture. If they don’t, challenge and question those in charge of the care.
Unfortunately, it is regularly reported that CCGs may be making decisions on NHS CHC eligibility based on budgets rather than purely on care needs. It is often only those, like Don, who refuse to give up, that succeed. If local disputes resolution fails you can take the case to an Independent Review Panel, and if this fails, to the Parliamentary Health Service Ombudsman. At Just Caring Legal, I am regularly guiding clients through this complex process and I feel passionate about making a difference and seeking to secure positive outcomes for vulnerable elderly clients.”
“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.
This is a reminder to us all to walk in each others shoes before we ignore, criticise or talk harshly to or about…As we work together, towards dementia friendly and accessible communities, we must keep this uppermost in our hearts and minds.
The power of collaboration, of acceptance, of being able to accept healthy criticism, in order to improve the lives of everyone in our community, including people with dementia and our families, is paramount to the work DAI does, and to all those individuals or organisations working tirelessly to make a difference.
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)
Following on from our first blog, welcoming you to the new year, we begin the years blog series with our first one being the last account from Mary Radnofsky of the Social Forum she and Peter Mittler attended last year, representing DAI and all people with dementia.
Thanks again to them both for their excellent work, and special thanks to Mary for writing this particular series of blogs. It is quite a long read, so grab a pot of tea or coffee, and sit yourself down in an arm chair for a very interesting read.
Mary’s 4th Blog from the UN Human Rights Council – Social Forum
10th Anniversary of the Convention on the Rights of Persons with Disabilities (CRPD), October 3-5, 2016 (Geneva, Switzerland)
You know that family reunions are often fraught with peril when your cousin the hunter is seated next to your aunt the vegetarian, or when your nephew in med school talks about his latest dissection over turkey & gravy. Sometimes the things people say make us uncomfortable at the dinner table, and when it’s family, we often let them know – either with a disapproving glare or an interruption, sometimes a raised voice or an abrupt departure. Rarely does it come to slinging a handful of mashed potatoes across the room. (In fact, no food fights were allowed when I was growing up.)
So at the United Nations, when people with common problems but multiple perspectives get together to discuss how best to solve them, I was very comforted to see that everyone behaved quite respectfully. For the most part, everyone had to hear each other out if they wanted a seat at the table.
I saw only one exception, and it was on the last day of the forum. An audience member who’d been given two minutes to comment was rambling on through the five-minute mark with no intervention by the moderator. Another lady in the audience was squirming in her chair, looking around, raising the palms of her hands, then looking at me, as if appealing to me to do something. I whispered, “It’s ok; the moderator will handle it.” She shook her head no, slapped her knees, and loudly said, “But she’s not doing a thing!”
I was shocked by the breach in protocol, not having seen anything like it in over 20 hours of meetings. So I tried to calm her, and again whispered, though more firmly, “The moderator will take care of it.” She whipped her head around to search the audience and roll her eyes, then made an audible protest about how much time was being used, and how unfair it was. She’d metaphorically thrown a handful of mashed potatoes against the wall. But none of it stuck. No one reacted. I sat very still, facing forward, with my eyes focused on the panel of experts, also ignoring the outburst. But I expected a gravy boat to come flying from the opposite corner at any second.
About a minute later, the moderator thanked the speaker for her comments, and gave the floor to the next person. This is a civilized place, and moderators understand that sometimes it’s more important to allow a vague, meandering voice to be heard, than it is to respect time limits.
There may be criticism, avoidance, and disagreement, but no food fights at the UN. Enjoy.
Tuesday, October 4, 2016 Making Development Inclusive.
Moderator: Ms. Lidia Pretorious, Chief Director, Rights of Persons with Disabilities, Department of Social Development of South Africa
Ms. Judith E. Heumann, Special Advisor for International Disability Rights of the U.S. Department of State
Mr. Michael Njenga, Board Member, Pan African Network of Persons with Psychosocial Disabilities, stated that the purely medical model for assessment is not effective. There must be a needs-based social model.
Ms. Priscile Geiser, Chair, International Disability and Development Consortium IDDC
Ms. Rosangela Berman-Bieler, Senior Advisor on Children with Disability, UNICEF
Gian-Pierro Griffo, from Italy, spoke about the UN Sustainable Development Goals (SDGs), and that people with disabilities need to be consulted on the decisions and events that affect their lives. People are the actors in their own country in working for development. They have the capacity to apply the Convention, so their knowledge and competence need to be included.
Tuesday, October 4, 2016 Side Event: Underrepresented Groups of Persons with Disabilities.
Co-organised by the African Disability Forum (ADF), Pacific Disability Forum (PDF), World Federation of the Deafblind, World Federation of the Deaf, International Federation for Spina Bifida and Hydrocephaly, International Federation of Hard of Hearing People, co-sponsored by the Permanent Missions of (TBC), with support from the International Disability Alliance. (Transcription available at https://synchshare.de/ida-cassandra)
Peter was given a generous amount of time to speak. Part of what he said was on quality of care, “We have evidence from the Organisation for Economic Co-operation and Development (OECD) that dementia gets the worst care in the developed world and we know it is unsatisfactory in the less-developed world. Many don’t get a diagnosis. Because young people are leaving the villages, old people are left isolated.
Peter also spoke on the successes of DAI: “We have persuaded the Alzheimer’s Disease International, which is the main international organization for people with dementia, with 85 national societies, to support our policies. So now they have a human rights policy, which includes full access to the CRPD and other conventions.”
Peter was critical of progress saying, “As far as we can see from CRPD reports, not a single member state has included people with dementia in their implementation of the convention; we ask why not, because we are fully entitled to it in Article one. That is indisputable, yet we are absent.” He added that, “About 30 countries have launched dementia strategies. They’re quite good dementia strategies; they contain the right ingredients and they may say nice words about the CRPD, but they don’t use the CRPD which they have ratified in creating dementia strategies.”
Peter also discussed the rights of children: “I’m sorry that no one in this meeting has mentioned that of the 57 million children out of school, more than a third are children with disabilities… I’ve been trying to draw attention to this for 15 to 20 years, ever since 1990 when the UN promulgated Education for All… We have a promise of a report from UNICEF institute of statistics in Montreal, with disability-disaggregated data for the first year of the SDGs but it’s in the coffin marked ‘when data become available.’ There is only some focus on children already in schools. And the UNESCO monitoring reports have said that, year after year after year. Some of us have protested about it; nothing has happened.”
I then spoke about the need for “Rehabilitative Education” (academic or skills learning) for people with dementia: (Transcription available at https://synchshare.de/ida-cassandra)
“My name is Mary Radnofsky; I’m from Dementia Alliance International. My comment is about lifelong learning. I’m interested in knowing if “Rehabilitative Education” is considered part of this category of inclusive learning. When people with dementia are diagnosed, it is assumed that they can no longer learn and this is, of course, a myth that needs to be broken; it is entirely false.”
I said that “Rehabilitative Education” should apply to people with dementia, since cognitive education is already guaranteed for people with disabilities to be lifelong learners. This could be another tool for us in the legitimate argument for RE-teaching us things that we lose due to degenerative brain diseases. Despite myths that we can no longer learn, the DAI Chair is getting her doctorate, I explained. I strongly advocate for anyone with dementia to be able to take courses in finance, formal logic, or math, for example, when we start to lose the ability to balance our checkbook or manage finances. And I declared that this “Rehabilitative Education” should be funded, just as any other rehabilitative speech or physical therapy.
Tuesday, October 4, 2016 Strengthening Accountability
Moderator:Mr. Stefan Trömel, Senior Disability Specialist, International Labor Organization (ILO
Ms. Malena Pineda Ángeles, Chief of program persons with disabilities, National Human Rights Institution of Peru
Mr. Alastair McEwin, Commissioner, Human Rights Commission, Australia, wants to eliminate discrimination against people with disabilities, so they have equal rights before the law, and promote principle of human rights the same as with the wider community. He says a government should be able to set up standards in any issue, to give community guidance, to be sure they comply with their Disability Discrimination Act. But he also said it takes time and resources to maintain and monitor changes.
Ms. Godliver Omondi, Senator from Kenya
Mr. Geir Jensen, President of the World Federation of the Deaf-Blind – made a statement read by assistant. He spoke of capacity-building by the International Disability Alliance (IDA) which has provided technical support to advocates from over 90 countries in 62 national overseas workshops. People became engaged with treaty bodies. Specific and mainstream monitoring processes were managed. Increased use of these mechanisms reinforced UN mechanisms too. As they are not a homogeneous group, he said, it’s a challenge to include all disabilities; there is a lack of reasonable accommodations , and extensive training is still needed for assuring the CRPD perspective is recognized.
Peter and Mary met in the café with Zhijun from the Peoples Republic of China, who was in Geneva studying about human rights, and asked about people with dementia in China; he said the challenges they still have, are for families to deal with stigma, hidden [harmful] practices, and basic human rights issues.
Peter and Mary also met in the café with Catalina Devandas (from Costa Rica), UN Special Rapporteur on the Rights of Persons with Disabilities, who asked us to suggest ways in which Member States can provide services for people with dementia for her upcoming report. Basically, she says, it is be the obligation of the state to provide support from a human rights approach. We told her about some of the DAI documents we’re working on, (e.g. the report on accommodating people with dementia at conferences, and creating dementia-friendly communities) and that we needed to get them ok’d by the DAI president to send them, but that we would get a summary to Catalina by the end of October, which she said would be fine, since her report would be published in March 2017.
Wednesday, October 5, 2016 Realizing the Human Rights of Persons with Disabilities
Moderator: Mr. Vladimir Cuk, Executive Director, IDA.
Ms. Theresia Degener, vice-chair of the CRPD Committee insightfully and clearly-explained about the implementation of the CRPD and monitoring of the practices in the 30 first countries that have been reviewed.
Wednesday, October 5, 2016
Implementation of Agenda 2030 under the CRPD: The Future We Want
Moderator: Bat-Erdene Ayush, Chief, Right to Development, OHCHR Academia
Ms. Abia Akram, CEO National Forum of Women with Disabilities of Pakistan
H.E. Ms. María Fernanda Espinosa Garcés, Ambassador Extraordinary and Plenipotentiary, Permanent Representative of Ecuador to the United Nations in Geneva
Ms. Eppu Mikkonen-Jeanneret, Senior Adviser for Global Social Policy, Ministry for Foreign Affairs of Finland
Ms. Sanja Tarczay, President of the European Deaf-blind Union
“I suggest that the United Nations Human Rights Commission create a Library of Best Practices, with Primary Resources used in each country that has ratified the CRPD, to improve the conditions of life for people with disabilities. These documents would not be reports by officials, but rather they would be brochures, workbooks, educational booklets, handbooks to help people in airports, computer programs to assist people, phone Apps tied to the CRPD, etc.”
Whatever we can do to spread knowledge, will help people with dementia to make better decisions about what they want and need, to fulfill their human rights.
Closure of the Social Forum was celebrated in a “Family Photo” by a few of us at the end of the meeting. (I’m not in this one because I was taking it!) You get the idea: the world’s family at the annual reunion, each with a special dessert to offer.
Believe it or not, DAI has recently turned three! It is usual to say, Happy Birthday so this blog is doing just that! The seven co-founders of DAI who set up this organisation on January 1, 2014, could never have imagined, in our wildest dreams how much progress we would have made in such a short time, and although three of our co-founders are no longer with us, we believe they would be very proud of what they dreamed of and started.
Ironically, most of us forgot our own birthday, and therefore made zero noise about it on the day, but we are however, celebrating it with our members and families at our online Café Le Brain on Tuesday January 17 (USA/UK) / Wednesday January 18 (AU/NZ). Login details have been emailed to members.
We are also very pleased to be able to report that very soon, you will receive DAI’s first formal Annual Report, along with our other news, plans and dreams for 2017, in our first e-Newsletter for the year.
Frankly, it is totally unacceptable that the 2015 conclusion of the Organisation for Economic Cooperation and Development[i], based on an exhaustive study of the world’s 38 richest countries was that “Dementia receives the worst care in the developed world,” This is one reason why we are such passionate advocates for real change, not just more rhetoric.
We may be seen by a few as too critical of some things, or as disruptors, as we often question the status quo. However, if care was not so poor in so many countries, as per the conclusion above, we would not have to.
Our greatest aspiration, is that we can work together, and that it will always be “Nothing about us, without ALL of us”. We hope that local, national and global groups of people with dementia and the many not for profit and other advocacy organisations can all work together, in cooperation and in harmony, towards the same or similar goals.
As we quoted on Day 1 of Dementia Alliance International:
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)
We are all working towards the same goals, which is to improve the quality of life for all people with dementia and our families; as a global organisation, DAI has a responsibility to work hard towards supporting that gaol in all countries around the world. If all the groups of people making a difference from every corner of the globe, all work together, imagine how much more powerful we could be…
[i] OECD (2015) Dementia: the OECD Response. Paris: Organisation for Economic Cooperation and Development.
Firstly, we wish everyone a safe and peaceful festive season, and thank everyone for their support and input to DAI. It has been a very busy and productive year, and we are grateful to our members, our supporters, our sponsors and especially to anyone who has made a personal donation to help us continue with out work.
Rather than ending the year here with a wrap of our activities, which we will do when we publish our first Annual Report either before the end of December 2016, or early in January 2017, instead we are posting two very important Christmas wishes…
The first request or wish was written by one of our new board members, also the Vice Chair of the Ontario Dementia Advisory Group, Phyllis Fehr.
“To the nurse who may care for me:
Hi, I am your assignment for today. I know I am just one of many but I ask you to please take the time to know me. You see I once was also a nurse. That really doesn’t matter as I am a human being. I come with an education and feelings. I am also a wife, a mother, a grandmother and more. Please take the time to read my chart as you can gain much knowledge about me before you ever meet me. In it you will find my medical history; this may give you a glimpse of what to expect from me. It will tell you what is being treated now.
Know full well that, that may not be my only problem.
What you see when you walk through that door may not be very telling. As you would see a patient that looks well and capable, able to do things on her own. If you don’t take the time you will not know that I have a cognitive impairment. You may not know that what ever you tell me is lost the minute you walk out of the room.
Don’t ridicule me for writing things down; you see I do this, so I will remember which will make your job easier in the long run. You see if you took the time to know me you would understand this, you would have not asked me if I was a baby who can’t remember anything. You would not embarrass me in front of others.
You see I know I have a problem, I am just trying my best to live well with what I have. If I can make notes then I can explain to my family what is happening, rather than them having to interrupt your already busy day to find out what is happening. I want to help you but in order for this to happen you must understand me. Well not just me all patients that you care for. You see stress makes my cognitive impairment worse, so yes you may have your hands full but I don’t mean to be a problem.
You see what is happening is that I am having a problem that I may not be able to comprehend or express but if you are aware you will be able to help me through this. You see I have early onset Alzhiemers, it started in my late 40’s.
No, I don’t look like a typical Alzheimer’s patient.
So it is hard to see it, but look, look there in my chart, oh there it is. If you aren’t well informed on the disease ask your educator. You could also go on line or you could become a dementia friend, they have lots of educational material on the dementia friends web site.
If I cause you any problems I do apologize. I do not mean to be a problem but this is what I live with. This is what many people with cognitive impairment live with, no matter what the cause of the impairment.”
Phyllis Fehr Copyright 2016
All people with dementia, and all members of Dementia Alliance International (DAI), have one other important Christmas wish:
“If you don’t believe we have dementia, please contact us in person, and make the time to find out about our the reality, before you accuse us of not having dementia behind our backs.
If it is really necessary in order to still believe us, because ‘we don’t look or act like we have dementia’, most of us would invite you to come with us to our next doctors appointment.”
In unison with the United Nations and the global disability community, Dementia Alliance International commemorates and celebrates the 10th anniversary of the Convention on the Rights of Persons with Disabilities (CRPD), as we have been advocating globally for full and equal access for people with dementia to this Convention for almost two years, and many individuals living with dementia have been advocating for these rights since the it was formally adopted.
On 13 December 2006, the United Nations General Assembly adopted a resolution that established the Convention on the Rights of Persons with Disabilities (CRPD). It’s aim is to “protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.”
The main message is that persons with disabilities are entitled to the full spectrum of human rights and fundamental freedoms without discrimination. To that end, the Convention promotes the full participation of persons with disabilities in all spheres of life, challenging customs, stereotypes, prejudices, harmful practices and stigma relating to persons with disabilities.
DAI also challenges customs, stereotypes, stigma, prejudices, harmful practices and discrimination, and are advocating for exactly the same rights as all others living with any form os disability.
The UN Committee on the Rights of Persons with Disabilities monitors how countries that have ratified the Convention are doing by reviewing them regularly and issuing concrete recommendations on how violations can be tackled and rights upheld.
DAI intends to monitor countries to ensure people with dementia are afforded the same access to the CRPD as all others with disabilities. Whilst 167 countries have ratified the CRPD, no country has yet acted on it for those of us diagnosed with dementia, and in close but autonomous partnership with Alzheimer’s Disease International, we sincerely hope we can impact tangible change.
The CRPD is the first human rights treaty ratified in the 21st century, with the highest number of signatories in history to a UN Convention on its opening day. Most notably, it is also the first internationally legally binding instrument to specifically address the situation of persons with disabilities at a global level in an effort to promote, respect and fulfil their rights.
Since its adoption at the General Assembly in December 2006, the Convention, through its articles, has raised awareness about disability as both a human and a development issue. It marks a paradigm shift, where persons with disabilities are no longer viewed as objects of charity but as active members of society, in charge of their own lives, with free and informed consent. The CRPD is the chief instrument that consolidates the efforts made by the United Nations to promote the equal rights and inclusion of persons with disabilities in all spheres of society.
If you are diagnosed with dementia, or know someone who is diagnosed with dementia, it is free and very easy to join DAI. We have educational webinars, online support groups, peer to peer support, and many other services and resources to support you.
Together, we can learn to live with dementia, not only die from it, and we are and will work in partnership to change the world.
The UN Human Rights Council – Social Forum – Part 3 of 4 Blogs
10th Anniversary of the Convention on the Rights of Persons with Disabilities (CRPD), October 3-5, 2016 (Geneva, Switzerland)
By Mary Radnofsky Ph.D.
Please note: Mary has provided us with Part 1 (of 4) (Titled Update 2) and Part 2 (of 4), which you can read first if you are new to our site…
“I hope you’ve digested the last couple of blogs from the United Nations Social Forum, because here’s a bit more. I’ve summarized comments from international delegates and representatives of Civil Society (non-profit groups and non-governmental organizations).
I also attended Side Events, which are held in smaller rooms with a more casual setting, and the opportunity to speak with other representatives of Disabled Persons Organizations. There are many flavors to these sessions, as you’ll see, in the diverse comments from governments and groups trying to implement the Convention on the Rights of Persons with Disabilities. You may not have heard of many, as they deal with all sorts of disabilities, not necessarily dementia. But they often have interesting ideas, and it’s always good to try something new! Bon Appetit!
Tuesday, October 4, 2016 Meaningful Participation and Empowerment
Moderator: Ms. Rosangela Berman-Bieler, Senior Advisor on Children with Disabilities of the United Nations Children’s Emergency Fund (UNICEF)
Mr. Robert Martin, intellectual disability rights activist, and incoming Board member of CRPD, says the CRPD has made a difference in some countries more than others. In NZ, it has brought the 7 Disabled Persons’ Organizations (DPOs) together. There, People First is for learning disabilities, (they think it’s a more respectful term than intellectual disabilities). They have an action plan to discuss health, for example, and responsible accommodations. This means the pace of the meetings is not too fast; peoples’ full names and organizations are used, not just acronyms (like I use here!). They’ve learned this helps other people too, and they’re training people to become meeting assistants. They print documents in large font. They go with people to meetings beforehand, and debrief afterwards with members. This allows for more meaningful participation, so they can have a voice at national and international levels to influence policy and practice. They’ve done this for over 30 years.
The following people also spoke, and their comments were recorded on UN TV.
Ms. Gerel Dondovdorj, CEO, Mongolian National Federation of the Blind, Mongolia.
Mr. Pascal Benga Tonangoye, Magistrate at the Court of Auditors of Gabon
Mr. Khalid Al Nuaimi, President of the Arab Union for the Blind
Tuesday, October 4, 2016 Side Event: Independent Living
Lila Angelova – spoke about working on CRPD Article 19 across the world (living independently and in the community).
Nadia Hadad – asked how local culture affects rights. What steps can be taken to address the challenges?
Prof. K. Al-Naimi – Qatar – said people with disabilities want to be independent, with the right to get support from the government and family.
Tefera – Ethiopia said that there is not independent living for people with disabilities in the rural areas of the country; there is also the problem of traditional culture and beliefs that interfere with advancement.
Anna Lucia Arellano – said that in Latin America, CRPD Article 19 (on inclusion and participation in the community) is being implemented in stages. Families are most important in addressing the inclusion problem. The community is not conscious they have to include people with disabilities in work or services, so people with disabilities must keep living with parents longer than would be necessary.
Facilitating inclusion is not about fulfilling a dream, not what a family may or may not want, but rather, it’s about RIGHTS in 19 countries in Latin America. The goal is to empower people and make the CRPD a reality. Right now, parents are too afraid even to have hope for their children with disabilities to live independently in their communities. This is now about changing the cultures of how families think, how support systems can help people rethink their rights.
Davar from Transforming Communities for Inclusion in Asia, said that once the rights of the most marginalized are respected, then the rights of all people will be included. It is time to shift from the medical model to the social paradigm.
Decision-making is complex. People move in groups, not alone, but as a culture. So in Asian cultures, decision-making is done in groups, and should not be done by the government. That’s the strength of the community there, and should be naturally maintained. The poor Indian in the slums will not get a Personal Assistant; it’s just not going to happen. So communities need to be aware of those people that do need support, and provide it.
A post-colonial policy framework discriminates against a number of people with disabilities. They have been interned against their will, because anyone in society can refer them and put them away. This includes people with leprosy, vagrants, etc. Some are kept in cages. Some people say that institutions are part of the community. Others have a group home, but they cannot go out into the community; so there’s a spectrum of placements.
There’s backtracking in the post-CRPD era now, to pull out the old colonial law from the state. But in other situations, the state is virtually absent, and so life itself is quite difficult.
Imed Ouertani – Tunisia. How does the government help? For more “protection” of people with disabilities, they’ll build more institutions. That didn’t work for the past 50 years, though, so the question is, will it now?
They asked how people with disabilities think about themselves and the future, and how can we change people’s ideas? A Personal Assistant could work for 6 hours a week, but doing what? Families are afraid to leave people with disabilities to make their own decisions. Yet the average person has the right to make mistakes and take risks. People with disabilities need and want to live in the community, too, and make the same mistakes as anyone else.
The Tunisian constitution has a new article, created by people with disabilities, that allows people with disabilities to have any kind of support needed to live in the community. There is a push for a law against discrimination based on disability.
Theresia Degener – Vice-Chair ofCRPD Committee , reminded us that that CRPD is an international treaty for which Member States can be held to account but is not legally binding. The Articles address choice, autonomy, support, availability of community services, etc. The social benefits, if available, are given to an agency and not to the person in it (e.g. accessible housing, PA, addressing denial of legal capacity). However, payments to individuals in the form of benefits are required under Article 28 (Adequate standard of living and social protection.
Local culture can interfere with the realization of the right to independent living, while the medical model focuses on their impairment. We need instead a culture of peer support, as we can learn from each other. Even though we’re disabled, we can be teachers. If I’m taught by my peer, the service provided me will be all the richer, because I can identify better with someone like myself.
Steps are being taken to implement the human rights model of “disability.” For example, “Independent” living doesn’t mean living alone in isolation. We need to re-think the concept of independence: Mountain climbers have equipment; some of us have accommodative devices. Others need accessible housing and services. It’s time to provide incentives and sanctions for service providers.
But currently there are paternalistic attitudes, such that everyone else thinks they know what’s better for us than we do, because there is an assumption that because we have some defect, we must be completely defective. It’s part of the all-or-nothing thinking pervasive in all cultures at one time or another.
Gian-Pierro Griffo, from Italy, pointed out the influence of a country’s culture can have on CRPD to such a degree that it can’t be implemented. He also raised the question of poverty, a more dangerous and urgent issue keeping the Convention from being respected.
So we end this part of the Geneva blog on thoughts of Italy. Spaghetti and tomato sauce seems like a simple, cheap meal, but there’s a lot that goes into a sauce to make it Italian. You can’t just assume that everyone is going to like it if you cook it up somewhere in New Jersey. Well, we’ve still got a lot to learn about making international recipes palatable for everyone. For now, though, the Convention on the Rights of Persons With Disabilities is trying to find just the right flavour that will appeal. I’ll let you know how that’s working out in the next part of my blog.
Time now, for a scoop of sorbet.
Sincere thanks to DAI members Professors Mary Radnofsky and Peter Mittler from all of our members and from the global dementia community for representing us all so well.
We celebrate the International Day of People with Disability (IDPwD)
In doing so, we also applaud the work of many of our members and all people living with dementia around the world who have been working in their local communities, or on the national or global stage towards a human rights based approach to dementia and our access to the Convention on the Rights of persons with Disabilities (CRPD).
This year’s International Day of Persons with Disabilities also falls alongside the 10th anniversary of the adoption of the CRPD. Last year on this day, the #aday4all hashtag became the most popular across the internet. We all hope this happens again in 2016!
Dementia Alliance International recently became a member of The International Disability Alliance (IDA), with what is known as Observer Status, and we are actively working towards full membership status. For those of you who are new to IDA, it says on their website:
We are united for the rights of persons with disabilities on the world stage
This is important for people with dementia to ensure our rights and recognition at the highest levels as people living with disabilities, caused by dementia.
It is imperative as we all work together towards the demand we made in Geneva at the WHO First Ministerial Conference in Dementia, March 2015 for a human rights based approach to dementia, and an approach that must include proactive rehabilitation and disability support.
Simply put, if communities must provide wheelchair ramps, they must also provide support for people with cognitive disabilities to live an independently in their communities as possible, and with equal access that others can expect, and are afforded.
If through providing proactive disability support for all, including people with dementia, our communities are dementia enabling and dementia accessible, then they will automatically be better for everyone of any age to live and thrive in.