This DAI Webinar is back by popular demand, following the recent and very successful April Webinar. It is one event, set in a number of different time zones, and may not be available viewing after the live session.
About the Webinar: This DAI “Meeting Of The Minds” Webinar is a repeat of the session we held on 29/30 April. It is a live event, not the recording of the first session, and both presenters will delve more deeply into the topic, and there will be time for Q&A.
These are challenging times and call for innovative methods. Two nursing homes decided to draw upon and apply the teaching and principles of Dr. Maria Montessori. Montessori believed the most important task of a teacher was not to teach but to observe the students and create an environment that encouraged students to teach themselves and each other what they needed to know when they needed to know it. She achieved amazing results! Similarly, amazing results are achieved when her approach is applied to persons living with Dementia, such as a dramatic reduction in drug use to control unpleasant or aggressive behaviours, reduction in staff & resident injuries, and an increase in level of activity of residents.
How powerful it would be if these same principles were applied at the same time to front line staff and those who supervise them. Effectively, this would create a new architecture for workplace culture, making it possible for employees to be the best versions of themselves as often as possible. We will review two case studies from organizations on their successful journey to breathe Montessori Inspired Principles into their organizations. It’s a Human Thing®
About Dr Camp: Dr. Camp gives workshops on designing cognitive and behavioral interventions for dementia internationally. These interventions are all designed to reduce challenging behaviors and increase the level of functioning and quality of life of persons with dementia. He has co-authored three college textbooks and published over 150 peer-reviewed articles and book chapters.
About Gary W. Johnson: Gary’s passion is improving the relationship that happens between frontline staff and their leaders. He has served as a Vice President of Operations for a large CCRC in central Pennsylvania. Gary is a licensed nursing home administrator. He has served on numerous boards and presented at regional and national conferences. He also served as adjunct faculty for Temple University. He is skilled at creating healthy teams, cultures and operational efficiencies. Gary has the unique ability to see to the heart of things and help people to be the best versions of themselves.
Tuesday, May 12, 2020 (USA/CA/UK/EU):
11:00 am Honolulu
2:00 pm Pacific
3:00 pm Mountain
4:00 pm Central
5:00 pm Eastern
10:00 pm London/Glasgow/Dublin UK
11:00 pm Paris, Munich, Amsterdam, EU
Wednesday, May 13, 2020 (AU/NZ/JP/SGP/TWN/CHN):
6:30 am Adelaide AU
7:00 am Sydney/Melbourne/Canberra/Tas/Brisbane, AU AU
5:00 am Perth AU/Taipei//Beijing
9:00 am Auckland, NZ
The Webinar runs for 1.5 hours.
Check your time if not listed above with this link.
Tomofumi Tanno says hello, all the way from Japan, but via a presentation he made in ADI Chicago last year!
Tomo is a remarkable dementia advocate living in Japan, and last year, with the support of Kumiko Magome, who translated for him on this occasion, Tomo talked about what it has been like, being diagnosed with younger onset dementia at the age of 39.
Wow, it is already Day 9 of Dementia Awareness Month / World Alzheimer’s Month #WAM2019!
Unlike 2018, we are taking the weekends off, so this series is an ‘almost’ daily one!
Today, we are privileged to share Emily Ong’s story, one of our newer members who lives in Singapore. Thank you Emily, we greatly appreciate you sharing your very story of being diagnosed with dementia, therefore your personal vulnerability with us all. Many people with dementia find that by sharing with others, they find strength, and give others hope.
Hello, my name is Emily Ong
June 2017 (the exact date I could not remember already) I have the most scariest experience of my life when I asked myself -“What do I need to make French toast?” – when it has always been my family usual breakfast. All that I remembered was bread and the equipment I need was a skillet.
I tried so hard to recall but NOTHING was retrieved.
It was like my brain has a virus attack and the French toast file has been corrupted. The “French Toast” episode marked the beginning of my “new” life that I am gradually learning to understand and manage.
By April 2018, I have done 3 Montreal Cognitive Assessments and the last score was 17/30, numerous MRI scans and one lumbar puncture were done but nothing conclusive, and one FDG-PET scan that showed significantly lower uptake of glucose in the thalamus and the cerebellum region. During this period I was misdiagnosed as having Fatal Familiar Insomnia, a type of Prion disease, and subsequently, as a psychiatric problem (depression?), and then as Alzheimer’s disease.
Each diagnosis brought along so much misery and emotional impact on me and my family. Life was emotionally unbearable, and I cried almost every other day!
I could not stop asking myself, “What’s wrong with me? Am I going crazy? Were my problems real?
At the age of 51, I was finally diagnosed with provisional fronto-temporal dementia. It was a great relief to know that my mind is sound, certainly not having a mental illness but a neurocognitive disorder.
It is a comforting and wonderful feeling to know that your doctor finally heard you and your struggles, rather than generalised your symptoms as mood swings, anxiety disorders and even depression. Though further tests are necessary to confirm which variants, I feel empowered because I can now move on and develop a support plan that include joining support groups to assist me functioning at my optimal level on a daily basis.
Early intervention is something very dear to my heart because that has always been my life mission in my work with special needs. Ever since then I have joined the Alzheimer’s Disease Association (ADA), Singapore and Dementia Alliance International (DAI).
I also set up a personal blog to raise awareness through sharing my journey with dementia and things I learnt about the neurocognitive disorders; participate in two research projects under the National Neuro Institute, Singapore; and going to undergo training to become self-advocate for YOD under “Voices for Hopes” program.
Without the support from my family and the new communities where I find solace in, it is rather unlikely that I can be so emotionally strong and positive as I am now.
My new friends taught me that there’s still life after the diagnosis because life can still be purposeful and beautiful with dementia.
On day 4 of World Alzheimer’s Month, #DAI member Juanita Hughes, from Brisbane says #Hello.
These stories highlight the many different experiences people have in terms of getting a diagnosis, and how they choose to live with and respond to what is a very difficult diagnosis to be given. Thank you Juanita for sharing your story.
I am 54 and I have young onset early stage behavioural variant frontotemporal dementia (bvFTD)
I have a strong family history of what we now know is bvFTD. My grandfather was quite some time along the dementia track, and he was misdiagnosed as having Alzheimer’s, even though, in retrospect, he had shown classic symptoms of bvFTD.
An older brother also had the same condition and we believe their father also had dementia, and may be others in his heritage.
My father has lost his sister and two younger brothers, and has another younger brother undergoing testing for this condition. After dad’s younger brother died his daughter a nurse started serious research into the condition and discovered the research group Frontier, located then at the University of New South Wales research group – Neura, which specialised in frontotemporal dementia research.
They were keen to have my father joined them as a research participant in their main research project and threw them he was diagnosed as having bvFTD and the genetic mutation involved was discovered – C9orf72. My sister and I indicated that when they started research that was applicable to us we were willing to join.
I have a background in science research, so once this was discovered I read all the scientific literature that about this condition and this mutation that I could put my hands on. This included the current diagnostic criteria for bvFTD. As soon as possible I had myself tested for the mutation and received a positive result – I had the mutation too.
This had been two years since my dad’s initial diagnosis due to delays within the free State Government sponsored testing system. The genetic counsellor told me that she could not tell me much about my prognosis except that it was not case of if but when I would get the disease. This result didn’t actually surprise me as I was already aware of minor changes consistent with the diagnostic criteria.
Within a few months of my genetic result, I had convinced my GP to refer me to a neurologist for testing. My initial neurologist was convinced that I probably had dementia, but he specialised in movement disorders rather than dementia so he referred me onto his colleague who runs a clinic in atypical dementias.
So about seven months after the genetic diagnosis I received a diagnosis of dementia – definite bvFTD with the early signs and known genetic mutation leading to bvFTD. The neurologist told me that I was extremely early in the dementia journey, and that he had never diagnosed anybody this early. Then wanted to put me onto pharmaceutical interventions which I adamantly refused.
A few months before getting my genetic diagnosis, Frontier in was able to obtain funding to run a longitudinal study to endeavour to identify early changes in biomarkers/scan data for Dominantly Inherited Non-Alzheimer’s Dementias – DINAD. My sister and I and my cousin all became participants in this research. The genetic counsellor of this research was pleasantly surprised at my knowledge of the disease and suggested I become a genetic counsellor myself. So this year I have commenced studying Master of Diagnostic Genomics, with a plan to continue into a PhD program.
Once I had my diagnosis I was no longer eligible for the DINAD program, and volunteered to join the same research program that my father was in. I went into my first assessment with this program only to find that not only had they placed me in the research program I thought I was joining, but many other researchers wanted me to join their projects as well – so many that I lost count. Because I am so much earlier in my dementia journey than the standard research participant I can give a different perspective to the research so they are all keen to have me participate.
I would like to repeat here part of posts (edited) I put on the Facebook page – Living Healthy with Early Onset Dementia – on August 22nd.
Saying this may sound crazy, but I’m grateful for the genetic mutation underlying my dementia … I have heard too many stories of the difficulty people have in getting an accurate diagnosis or any diagnosis at all, and my heart goes out to you all.
I am glad that I have this diagnosis while I am still able to describe what it feels like to be on this side of dementia as researchers characteristically state that people with bvFTD lose the capacity to assess their own changes early in the disease process. I can see this with my dad who is in late mid stages of the same disease. He variously denies any problems or says he’s getting better, whereas my mum and I can see his degeneration.
The downside of this is that researchers don’t bother to ask people with a lived experience and just rely on carers and clinicians observations to describe the characteristic diagnostic conditions. I am in the unique position to describe this lived experience, as most people with this dementia are diagnosed too late, or haven’t read the scientific literature to know what erroneous conclusions to challenge.
…Within a few days of my diagnosis I had applied to join Dementia Alliance International and attended my first support meeting within two weeks of the diagnosis. I have now joined their action team. I have become an advocate with Dementia Australia and applied to join the Dementia Australia Advisory Committee.
When I joined as an advocate with Dementia Australia, I agreed to become part of a focus group. The Australian Commission on Safety and Quality in Health Care asked Dementia Australia to assist with rewriting a Cognitive Impairment Fact Sheet to be used in healthcare settings. I volunteered to help in a focus group in my hometown but before that happened I had to come down to Sydney and was invited to join the Sydney group.
As a result of participating in this project I’ve been asked and agreed to three more. The next week I talked with a researcher from a group that has been commissioned to do research on behalf of the Royal Commission into Aged Care Quality and Safety. Late in August I agreed to be filmed as part of a video to be released Dementia Australia Action week.
In a few days’ time I will be involved as a panel member representing those with a lived experience of dementia in the Decoding Dementia Mentoring Workshop which is assessing new technological innovations to help people living with dementia. In October, I will be speaking publicly about dementia for the first time. Dementia Awareness and Advocacy Team is a group that I joined in my local city, and I am speaking at their annual one-day forum.
These posts well describe my feelings and emphasises my motto:
This project was initiated, to support others with dementia to not only be inspired, but to develop some of the skills to become self-advocates.
The project partners consulted with dementia working groups and individuals who are already active dementia advocates in different countries. This was done to identify the barriers to self-advocacy, which can include: confidence, accessibility, discriminatory language, stigma and lack of engagement from others. The project also identified existing resources to support dementia self-advocates and highlighted some of the gaps that exist.
Self-advocacy is about having a voice – being able to represent yourself and express your views and needs. Self-advocacy supports the human rights of people affected by dementia and also gives our movement a more powerful and united voice.
As part of the project two resources were created:
The Many Voices of Dementia Advocacy, a short film with seven people living with dementia in different countries, talking about their experiences of self-advocating, their motivation and top tips.
Christine Thelker’s story
The first time I spoke publicly, I was nothing short of terrified, and totally lacking confidence in my ability. Living with dementia means your abilities change, your confidence plummets, and mostly due to how others treat you. So advocating and finding my voice, through DAI, I have blossomed, and I encourage others to get involved and use their voices, and taking part in this project was one way I can try to make a difference for others.
After being diagnosed, and left with virtually no supports, other than ‘go home, get your affairs in order, or, get ready to die’, well, that wasn’t good enough for me. It took over a year for any support at all was provided. Luckily, I found my own support with Dementia Alliance International, which importantly, is an organisation run completely by and for people living with dementia. Being part of this project makes me hopeful that not only will we encourage more self-advocates, we will all start working together.
Hilary Doxford’s story
Back in 2012, I somewhat reluctantly ‘fell’ into self-advocacy and my participation grew from there. My initial worries and fears would have been reduced had I had access to the resources this project delivered. Six years on, I still find this information helpful.
I’m very pleased to have been involved in the development of these resources and very happy to see the advocacy knowledge and activity happening around the world being pulled together. I hope others find them as useful as I have. I hope they enable people thinking of self-advocating to go to places they never thought possible because everyone who speaks out makes a difference.
5 Top Tips from self-advocates
“Don’t be afraid of your symptoms it does really legitimize what you’re trying to present if people do see that you do have some of the symptoms with the dementia” Dennis Frost, Australia
“Humour makes up for all the fumbles we make along the way and just, you know, I talk from my heart – so that’s probably the biggest piece is you have to talk from your heart .” Christine Thelker, Canada
“Be true to your experience, who you are and your voice. The rest will follow from there.” Kris McElroy, USA
“To someone who is thinking should I advocate or shouldn’t I – try it and see!” Agnes Houston, Scotland.
“The first few times that you speak out publicly you’re terrified of not remembering what you want to say but then you find out every speaker is the same and that even people without dementia are like that.” Kate Swaffer, Australia.
For more information or support, or to get involved with local or global advocacy, contact the project partners for more information:
The inspiration for this project evolved from conversations between Kate Swaffer from Dementia Alliace International (DAI) and Amy Little from The Global Alzheimer’s & Dementia Action Alliance (GADAA), after conversations on how to better support capacity and abilities inDAI members, all who are people diagnosed with dementia, who have not only lost, but are continuing to lose some abilities.
With the appropriate support, it is very evident people with demenia can still, and do, live very meaningful lives, for much longer than told to expect, if diagnosed in the earlier stages of dementia.
By working together, the impact of self advocacy makes a much bigger difference.
DAI Board member Christine Thelker was listed to make a Civil Society Statement on behalf of Dementia Alliance International and our Strategic Partners Alzheimer’s Disease International on Wednesday of this week during Round Table 2 of the 12thSession of the Conference Of State Parties on the Convention on the Rights of Persons with Disabilities, also the session being co-chaired by Kate Swaffer.
Round Table 2: Social Inclusion and the Right to the Highest Attainable Standard of Health
Read the full stament here which was prepared ij response to the theme of the session. Unfortunately the session was cut from 3 down to 2 hours, so she didn’t get to make the statement on the day. However, there was an opportunity to make a shorter verions of it at a Side Event yesterday, which we will share soon, including with a video of her speaking. The recording of our Side Event, Dementia: the leading cause of disability is also available online now.
Prepared Civil Society Statement:
Distinguished Chairs, speakers and delegates
Thank you for the opportunity to make this statement on behalf of Dementia Alliance International, the global voice of 50 million people living with dementia and Alzheimer’s Disease International today, who are our strategic partners.
As partnering international organisations, we collaboratively advocate for the rights of all persons with dementia and their families.
The 2030 Agenda sets out an ambitious goal vision to reach and empower those left behind.
As one of the 50 million people with dementia, I am being left behind.
Furthermore, women and girls are disproportionately affected by dementia. More women than men live with the condition, they provide the majority of care support and they also face the greatest stigma.
Women also make up 2/3 of dementia care supporters and more than 70% in lower and middle income countries. Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against, as a result of their age, sex and condition.
I am here today to ask you to help me claim my rights as a person with disabilities to empowerment and social inclusion and the highest standard of universal health care.
Articles 19, 25 and 26 of the CRPD respectively address my rights to live independently in my own home in the community, without fear of being institutionalised and segregated, due to health and disability services and support not being in place to support me to live independently.
As a person with acquired cognitive disabilities that may cause communication, personality or other changes to my capacity to function without support, I demand my right to non-pharmacological support to live with a high quality of life, and am not chemically or physically restrained.
The lack of education and awareness of dementia of health care professionals and service providers, compromises my right and ability to access adequate services. Article 25 clearly states I must be able to access health care. Currently, people with dementia are being denied this.
Secondary to my dementia, as a person with younger onset dementia, I am being further denied support to live well in my community, support to maintain independence and access to health care.
It is therefore imperative we ensure health care providers are adequately educated in dementia, and those of us living with it are supported as people with cognitive and other disabilities to live a high quality of life in our community.
This is our fundamental right.
Governments, international civil society and partners around the world must get behind this global challenge and unite for a world where no one living with dementia is left behind.
This video is of DAI member, Graeme Atkins from Australia, who wrote and performed this song especially for our 5th birthday this year. Very special thanks to Graeme, and also to his wife who supports him to live so positvely with dementia.
We are posting it here today, to get us in the moodfor our World Rocks Against Dementia online event, being held on March 22/23, 2019. Register here now, if you haven’t already done so!
During World Alzheimer’s Month, we featured a daily series of #Hello blogs, personal stories frrom DAI members from around the world. Many reported how educational and helpful they were, and UK blogger and dementia consultant Beth Britton asked for permissio to use some of them in a training session she was hosting. The following is Beth’ s story’.
‘Learning from Personal Stories’
DAI bloggers feature in MacIntyre’s Dementia Special Interest Group Meeting
As a former care partner to my dad, who had vascular dementia for 19 years, the work of Dementia Alliance International is close to my heart. So, when one of my social care consultancy clients, MacIntyre, asked me to run a session during their Dementia Special Interest Group meeting on 3 October 2018, my source of inspiration was DAI’s ‘Hello My Name Is’ World Alzheimer’s Month blogs. Kate Swaffer had kindly alerted me to this series of blogs via twitter in early September 2018, and the chance to share these stories further wasn’t to be missed!
Before I tell you how my session went, I thought a quick history lesson might be helpful…
I began writing, blogging, campaigning and then training and mentoring consultancy work after my dad died in April 2012.
I first met Kate in 2013, having initially connected via twitter (you can follow me on Twitter, and I have met and worked with other DAI members in the UK since.
‘Learning from Personal Stories’
My October 2018 Dementia Special Interest Group Meeting session
Firstly, I should say I am extremely grateful to DAI members Kris McElroy, Dick Watson, Jennifer Bute, Julie Hayden, Carol Fordyce, Phyllis Fehr, Davida Sipe and Nina Baláčková for allowing me to print and share their blogs for my ‘Learning from Personal Stories’ session during MacIntyre’s October 2018 Dementia Special Interest Group meeting. Also, huge thanks to Kate Swaffer for kindly liaising with you all on my behalf – without this combined support the session wouldn’t have been able to happen.
After a brief introduction from me, we watched Kris McElroy’s film . I then picked out a couple of quotes from Kris’ blog, including:
“While I have been adapting, adjusting, and fighting through challenges, barriers, stigma, and stereotypes related to my disabilities since childhood; life with dementia has brought its own unique set of challenges, barriers, and stereotypes. Barriers such as access to resources and quality life/health care options; and challenges with areas such as spelling, driving, comprehension, memory, multitasking, confusion, and navigating day to day life.”
I felt that this was a really important quote because so many of the people with learning disabilities that MacIntyre support have faced similar challenges, barriers, stigma, and stereotypes throughout their lives too.
We then moved into table work. With staff members sat around 5 tables, I shared printed copies of the blogs written by Dick, Jennifer, Julie, Carol and Phyllis, for staff to read, discuss and pick out quotes from.
After 15 minutes we had a feedback session, in which a staff member from each table briefly told each DAI member’s story, and shared a couple of quotes that had stood out in their table discussions.
Along with all of us empathising with the struggles we heard about around diagnosis and post-diagnostic support (one of the great challenges for people with a learning disability is getting a timely diagnosis, and staff being believed when they go to doctors expressing concerns about changes in the person that they are supporting), some great slightly off-topic discussions also sprang up, including about the need to communicate sensitively and compassionately with people who have a learning disability and dementia.
A huge plus in our discussions was having DAI member Tracey Shorthouse with us for the whole of our meeting. When it came to my session, Tracey was fantastic at contributing to the conversations we had about her fellow DAI member’s blogs. Having heard Tracey speak earlier in the day about her struggle to get a dementia diagnosis as a nurse, reading about Jenniferand Julie’s experiences as former healthcare professionals really brought the point home that no matter how much you may know professionally about how health and care systems work, when it’s you who needs the help and support you are often no better off.
We were running out of time after all of these great discussions, but I was able to briefly speak about Davida’s blog and the points about medication, and Nina’s blog made us all smile with her anecdote about potato soup.
Overall, MacIntyre staff were really engaged and enlightened by the DAI ‘Hello My Name Is’ blogs, and sometimes shocked too.
The end of this quote from Phyllis’ blog probably drew the biggest gasp and collective head-shaking of the day:
“It wasn’t till I was 53 that I received a firm diagnosis, after going through a two-day battery of testing. I will never forget that day or maybe I will, but I feel like it has been branded in my head. You see on that day we were escorted into the gerontologist’s office. Once she entered the office, I felt like I no longer existed. She looked at my husband and spoke to my husband. As far as she was concerned, I was not there. She told him that I had “early”-onset Alzheimer’s and that I was still doing well. She instructed him to bring me back when I couldn’t dress myself.”
I know from staff feedback that the session was really enjoyed, and that’s only possible because of the generosity of DAI members in sharing your blogs with us, and for writing with such honesty and candour that means there is so much for professionals to reflect upon.
Everything I do in my work is about learning from the experts: people living with dementia themselves and those closest to them. That is where it all began for me with my experiences with my dad, and I hope that inspired by the fantastic session DAI members supported me to run for MacIntyre’s staff, other training providers and health and care organisations will realise the value of working with the REAL experts in the future.
Thank you DAI.
MacIntyre were established in 1966 by Kenneth Newton Wright, the parent of a disabled child, and have grown to become a leading UK charity, highly respected and committed to setting standards and increasing choice. MacIntyre provide learning, support and care for more than 1,500 children, young people and adults who have a learning disability and/or autism, at more than 150 services across England and Wales. Their diverse range of services includes registered care homes, supported living, outreach, accredited training schemes and lifelong learning services, as well as a residential special school and further education provision.
I’ve worked with MacIntyre since 2013. In 2016 they were awarded a significant grant from the UK Department of Health and Social Care’s Innovation, Excellence and Strategic Development Fund to improve the care and support of people with learning disabilities who have dementia or are at risk of developing dementia. MacIntyre’s Dementia Project was born https://www.macintyrecharity.org/our-expertise/dementia/the-macintyre-dementia-project/. For readers who aren’t aware, people living with a learning disability are more at risk of developing dementia as they age, and if they do develop dementia, it’s usually as a younger person (under 65 years old) and it often progresses rapidly. Follow MacIntyre’s Dementia Project on twitter here…
I’ve introduced many people living with dementia to MacIntyre for them to come and speak about their experiences, ensuring these meetings remain rooted in personal stories. Dementia Special Interest Groups are attended by around 30-50 staff from across MacIntyre, along with guest speakers and sometimes other individuals with professional or personal interest in the synergy between learning disabilities and dementia.
Special thanks from DAI to Beth Britton, and to MacIntyre and their team for engaging with our members in this way.
The #DAI#Hello#WAM2018 blog series have been very popular, hence we intend to continue them at least weekly for some time to come. We have many new members joining DAI each week now, and want to continue to give everyone with dementia a platform to have a voice, if they want one.
As is it important to talk about progress (or not), today, therefore we begin October with an article by DAI member Professor Peter Mittler. Peter says #Hello with a reflections on our human rights.
Peter has worked tirelessly for most of his professional life for the rights for people with disabilities, and for the last few years has devoted his attention to the rights of people with dementia, sharing his extensive expertise and knowledge, and is friendship and commitment to the 50 million people currently living with dementia. Thank you Peter. We are humbled and honoured to have Peter as a member, and thank him for his continued focus on the rights of us all; DAI is deeply indebted to you.
Hello, my name is Peter Mittler
MY REFLECTIONS ON OUR HUMAN RIGHTS
My human rights journey began shortly before my 7thbirthday when Hitler’s army marched into Austria and street thugs wearing brown shirts and swastikas arrested thousands of Jews, closed their shops and businesses and stopped me and other Jewish children going to school.
My story is told at length in a memoior, Think Global Act Local: A Personal Journey (2010). It now needs a new title: Act Local Think Global because the responsibility for taking action on human rights rests with each and every one of us.
The United Nations Organisation was founded in the wake of the Holocaust and the loss of hundreds of million lives in World War 2. Under the inspirational leadership of Eleonor Roosevelt, the UN produced the Universal Declaration of Human Rights in 1948 for everyone on the planet. That Declaration provides firm foundations for the legally binding Conventions on the rights of specific groups who were experiencing inequalities and discrimination: women, children, ethnic minorities and last but not least disabled people.
Although the UN has officially recognised people living with dementia as persons with cognitive disabilities, governments have not included us in the implementation of the CRPD or other Conventions. This is nothing short of systemic discrimination which will only end if we insist and persist in the demand for our human rights on the same basis as people with other disabilities.
The UN supports us but our governments continue to ignore us. Dementia Alliance International and Alzheimer’s Disease International helped inform the World Health Organisation’s Global Action Plan for a Public Health Policy in Dementia (2017). It is a good plan but it is not clearly based on the General Principles and substantive Articles of the CRPD. Furthermore, very few governments have acted on it.
There now needs to be a campaign to use the CRPD in planning supports and services in the wider context of the UN’s Action 2030 Sustainable Development Goals.
On the final Day of the #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature Jerry Wylie, DAI’s Vice Chair and an advocate from Philomath, Oregon, in the USA. Jerry is a committed and very active board member, and supports two of our peer to peer support groups, as well as co-hosting our Action Group and wekly Brain Health Meetings.
Thank you Jerry, from everyone, for saying hello again here to support this series, and for all that you do for DAI and others. Jerry has also set up a local face to face support group where he lives, which now has more than 20 members. We are very proud of him, and grateful for his hard work. This is his story.