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.
On Day 29 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate, Christine Thelker from Canada. Christine is an incredibly active advocate and DAI member, and supports one of our CA/USA support group. She was also featured in our online Art Exhibition this week!
Thank you Christine for sharing your story by saying hello here, and for all that you do for DAI and others. We love you too. Special thanks also to Mike Belleville for finalising the production of Christine’s video, and upoading it into our YouTube Channel.
It’s almost the end of World Alzheimer’s Month, and we have been sharing our #DAI daily members #Hello is stories. In fact, there are so many in our draft folder, we will be continuing them well beyond #WAM2018. These stories have helped raise awareness not only of dementia, but of the unique and individual experiences each person has with a diagnosis of any type of dementia.
Today, we share Veda Meneghetti’s story, who was supported by her partner Lynda. DAI member Mike Belleville produced the video which shares some of Veda’s beautiful photographs, with her own music, and an overlay of her story, also copied below. Thank you Veda, and also Lynda and Mike for todays blog.
“Hello, I’m Veda Meneghetti. I was born in Adelaide, Australia to an Italian migrant father and an Australian mother. I got called “Veda Spaghetti” at school.
I hated school, but I was a “cool” teenager. My mother worked in a department store so I always had great clothes. My dad was a stonemason who worked in marble. He kept a wonderful vegetable & fruit garden and I had animals around me….I love animals.
I liked art but hated everything else and left school at 15. They’d made me feel stupid -I didn’t know I was dyslexic till 50 years later. I taught myself to read & write well, but I can’t read a music score.
I’d been playing guitar & singing since I was 10. I went on TV for a young talent time thing & then became lead vocalist for a couple of Adelaide bands. We started touring in Australia and then went overseas when I was 21. I met up with a girls’ band and continued to work with them as resident musicians in Asia, Africa and Europe. We came back to Australia when I was 27 and became the Party Girls band. We toured a lot, made an album ourselves, appeared on TV and wrote a lot of our own music. In 1985 we were the only girls band to kick off the Australian leg of the 1st. world simulcast, Aids for Africa. I did lead vocals and rhythm guitar.
When the band split up I started my own band, Safari, which played regularly in Sydney in the 90s. I kept on writing songs though I retired from performing. My last 4 songs were recorded in 2010.
In 2012 I was diagnosed with Primary Progressive Aphasia (logopenic). I’m losing language so my partner Lynda is writing this for me. I can’t read or type/write anymore, but I understand.
I joined DAI after I met Kate Swaffer. We did a presentation together in Kiama for Dementia Awareness Month 2014. Lynda and I became members of the Kiama Dementia Friendly Community Advisory Group, the #KiamaDAGs. We get together socially with other people living with dementia in our region, run community education workshops and sometimes do media coverage for the project. Lynda and I have presented at a few conferences, using my songs and our photos. We’ve made a lot of new friends who have dementia. We still get involved in research. I’m not ashamed to say that I have dementia – people need to know what it’s like.
I just want to live in peace. I’m happy living two hours from Sydney – it’s beautiful here. We go back to the city now & then to visit friends, because now most people have stopped visiting us.”
On Day 26 of our #DAI#Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate G. Dallas Dixon from the USA. Dallas is often known as the The Dementia Dude, or aka Danger Presley by his friends! It is a recording of the speech he was accepted to give at the 2018 ADI Conference in Chicago, “Humour as a psychosocial intervention for dementia.”
As Dallas was unable to attend, he recorded it instead, and has granted us permission to get to know him through this vlog in our #Hello series. You will be entertained, but there are some very serious messages as well. Thanks Dallas!
On Day 25 of our #DAI#Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate Bob Murray from Canada.
Bob is also an avid golfer, and a very active member of DAI, attending the weekly DAI peer to peer support groups, our Action Group, our monthly Cafe Le Brain, and the weekly Brain Health meetings. We thank Bob for sharing his story with us here.
Let me help you understand…
Hello, my name is Bob Murray. I have ‘lived well’ with arthritis, cancer, a lousy memory, a hearing impairment, depression and more, and I still live with these health issues, the least of which is ‘ageing’. I now have a dementia and intend to live well with it wherever the journey takes me. I also want to help you understand.
In 2013, when I was 74, now five years ago, I told my family doctor that I felt that my short-term memory was worsening – ‘senior moments’ were coming more frequently. She did a quick ‘clock’ test and suggested that I get a SPECT brain scan. The result was called ‘mild cognitive impairment’ (MIC – a dementia) which can progress to frontotemporal dementia – a disease of the brain with no known cure. Since then I have read everything that I can find out about MIC and Dementia. Some say the worst of all the dementias is Alzheimer’s Disease (AD). Scary stuff. My wife of one year was probably more scared than me.
I have had a good life and intend to continue the same into my 90’s. Genetics means a lot to me. I take after my father who lived for 52 years with type one diabetes and died at 89 of a stroke. His 3 siblings lived well into their 90’s. My daughter got type one diabetes when she was 7 and is now 46 years old and is doing well. Diabetes skipped my generation. I am the fourth generation of Murrays in the printing industry and my son continues this tradition.
My dementia is progressing slowly
I’ve been Lucky. My dementia is progressing slowly. My ‘senior moments’ are increasing in frequency but, with the help of my caregiver, my wife, I am still ‘living well’ with dementia quite enjoying my life.
There are 2 Doctor’s work with Dementia that I follow closely – Dr. Dale E. Bredesen and Dr. Norman Doidge. If you were to Google these names you will discover a great deal of information re the reversal or delay of cognitive decline and the brain’s way of healing. These are my guidelines for my life in my future. The keys are exercising and nutrition and everything in moderation
I’m now 79 years old, I’ve had a good life, I am LIVING WELL WITH DEMENTIA and intend to continue into my 90’s.
When I was 78 years old my family doctor and the head of our memory clinic and my local Alzheimer’s Society told me that there was nothing they could do for me – I was doing well. We moved away from the big city (Toronto) to a rural small town (Seaforth) in 2015 for it’s peace and quiet. Here I was introduced to the local Alzheimer’s society for counselling for me in Dementia and Care Giving for my wife. Time well spent!
I was introduced to their educational specialist who suggested that I look up the blog of Kate Swaffer who is founder and CEO of Dementia Alliance International (DAI). This organization is restricted to those with dementia. Currently I talk weekly with others over the internet for 2 – 1 hour sessions throughout the world. I was no longer alone. Highly recommended – no cost.
From my time with depression (my early 40’s), I learned that writing about myself was very therapeutic. I met with our local Alzheimer’s Society and we developed a strategy that I would tell my story with dementia and they would publish it in their monthly Alzheimer’s e-newsletter.
Thus was born “My Voyage with Dementia”.
This September’s column was my 11th column and I am also being published in a ‘opinion’ section of a local weekly newspaper. All the columns are on this blog, My Voyage.. This column is now being published on the South Western Ontario website.
Seeing my opinion column in print is very exciting.
Coming up with monthly columns with my personal experiences on dementia has not been as tough a job as I had anticipated. Going weekly may be in my future – it excites me as a great challenge. I meet with the newspaper in 2 weeks to decide on a win-win course of action. Stay tuned. In the meantime please read my past columns – I appreciate comments. This challenge seems to be slowing the progress of my dementia. Time will tell.
Keeping my brain fully engaged is important to me. Incidentally, since starting to learn to play the saxophone my golf game has improved from the mid 90’s to the mid 80’s. If you are a golfer you know that golf is a brain game.
Welcome to another day of World Alzheimer’s Month, where we feature a #DAI member from the US in our #Hello series for #WAM2018. Thanks Davida for sharing your story.
Lewy Body Dementia and Me
Hello my name is Davida Sipe. I first experienced memory loss, confusion, mind fog and hallucinations when I was 50 years old. I spent over a year and many tests with my neurologist to first obtain an early onset Alzheimer diagnosis, which was changed three months later to Lewy Body Dementia by a neuro-physiologist after in depth testing.
My father also had Lewy Body Dementia and when my DNA was tested, it showed that I carry the highest risk dementia gene so mine is most likely due to Alzheimer running on my mother’s side of the family and Lewy Body Dementia from my Dad.
The diagnosis was devastating at first because I had just recently remarried and I was only 51 years old. I was really struggling with day-to-day activities and could not be trusted with financial responsibilities. My last employer strongly encouraged me to quit since I could no longer handle working in customer service and entering orders so I had been unemployed for several months with no prospects of a job that I could actually successfully complete daily. I had truly hit rock bottom when I got my diagnosis.
My neurologist is a wonderful doctor and immediately placed me on medications to treat dementia, which included an anti psychotic to alleviate the very real hallucinations that I was experiencing on a regular basis.
I also started reading about everything that I could learn about Lewy Body Dementia including support groups like Dementia Alliance International and joined their peer-to-peer online chat group.
Exercising, staying socially active & acceptance
Now I exercise daily, watch my diet, stay socially active with my friends and take my medications. I am not able to work and have been approved for disability to help us financially. Despite not working, I stay with a daily routine of activity to keep myself physically, mentally and emotionally active each day. With my medication, currently my mind has cleared a great deal and I only occasionally suffer from hallucinations.
I feel your state of mind and willingness to accept your disease aids in fighting the progression. My father was not so lucky. He refused to accept his diagnosis and would not take his medication to fight the symptoms until he was in the later stage and could no longer refuse them. At that time the medication made very little difference in his mental state. I watched him deteriorate until he was almost unable to swallow and had pneumonia from aspirating his food. A couple months later, he suffered a major stroke and was taken from us…… I honestly felt that his resistance to the medication only made his condition worse so I believed it necessary to accept my diagnosis and to work with my doctors to fight this horrible disease.
Yes, at nearly 53 years old, I have days that the weight of my disease hangs heavily above me but I still fight to stay me. But I have a loving husband, two children and now two grandchildren to fight to stay as clear minded as I possibly can and so far it is working.