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.
On Day 13 of the #DAI#WAM2018#Hello my name is blog series, we feature DAI member Dennis Frost from near Kiama in NSW. Dennis speaks to us candidly, sharing his story of being diagnosed with a younger onset dementia, and the advice given to give up work, and that he may have a only few or maybe up to 20 years to live! It is a common story, as this series is highlighting.
Dennis also talks about the stigma, and the reactions of others, and that the stigma and often hidden social barriers are often worse then the dementia. He also shares how meeting others with dementia has helped him to live more productively and positively with dementia. Thank yo Dennis. for sharing your story with us.
On day eight of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our USA members stories of living with dementia, and the presentation she made on Day two of the ADI confernce recently with her amazing son Rhys Dalton.
Thank you Maria and Rhys for allowing DAI to publish this during September to help us raise awareness. Together with Rhy’s fiance Kayla, you are an awesome team, and we love and are inspired daily by you all.
On day two of World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of his life and living with dementia. Thank you Howard, for allowing us to share it here, and for and actively being involved in one of our peer to peer support groups, as well as representing DAI as an advocate in the UK.
Hello, my name is Howard Gordon.
I worked in healthcare for nearly 20 years but at the beginning of 2014, I began to notice changes; I was forgetting regular tasks, getting lost in familiar places, getting confused and doing things out of character.
I moved from Acute Medicine to Outpatients in 2015 as I realised I could no longer safely work in a ward based environment but the challenges continued to grow.
Although I had plenty of Dementia training over the years, it wasn’t until I saw a television programme about Chris Roberts and his family that alarm bells rang.
I went to my GP and she did blood tests including checking my Thyroid but when I went back the next week the tests were clear and after cognitive testing it was her opinion that I may have Alzheimer’s.
Three months later I saw a Neurologist and over the next 6 months I had MRI and SPECT scans, more blood tests and four and a half hours of Neuropsycholgical testing and during this time my Fathers cancer came back after 26 years.
In March 2017 came the diagnosis, younger onset Alzheimer’s and Frontotemporal Dementia, two leaflets, some information about research, instructions not to drive and to go home and make my Will and Power of Attorney.
As we walked out of the room there was nobody there and so it would be for about a year.
During 2017, one of my daughters and Grandson nearly died of Carbon Monoxide Poisoning, my Grandson had a cancer scare, my Father passed away and in September I was signed off work and my neurologist said she didn’t know how I was still standing.
I began to engage on Twitter receiving support and encouragement from around the World and by March 2018 I decided that I would have to find my own way through my journey with Dementia and it was through Twitter I found out about the A Good Life with Dementia course run by Damian Murphy of Innovations in Dementia CIC.
Originally, my wife and I only went for one session but it was like a light bulb moment for both of us. In two hours there, we went from Prescribed Disengagement to finally being engaged with life again. With Damians agreement I went along for the rest of the course, even though it meant undertaking a 130 mile round trip to York.
I had begun my blog just as a record of my journey before the course but after it began to expand into support, information and articles about topics relevant to Dementia.
Hopefully, I still have a long journey with Dementia in front of me but I hope that with the support of my extended family of DAI and others, I can continue with the work I am doing for some time to come.
I will always be grateful to the course in York and to the support and opportunities that Dementia Alliance International have given me.
Howard is very actively involved as an advocate; he is an active member of Dementia Alliance International, and he is also a member of the following organisations or groups:
Alzheimer’s Society 3 Nations Dementia Work Group
Alzheimer’s Society Research Network
WEGO Health Patient Leader
Global Disability Summit 18 Partnership Forum
DEEP UK SHINDIG Group
Disability Rights UK
Royal College of Psychiatrists Memory Service National Accreditation Programme
South Yorkshire Dementia Research Advisory Group
Young Dementia UK Network
Young Onset Dementia & Alzheimer’s (YODA) UK
Research Participant and Steering Group member
Admin “Living with Dementia” Facebook Group
Today, we bring you DAI’s Vice Chair Jerry Wylie’s recent Plenary speech from ADI Chicago. Sit down, grab a coffee and put on your seat belts. It is a fabulous, if not challenging ride, especially so for health care professionals and providers, so get yourself ready, relax, and tune in to watch it now here, or later on our YouTube Channel.
Living the U.S. National Dementia Plan
Presented by Jerry Wylie
This is not Jerry’s full speech notes, but a blog he wrote very recently, that goes well with it, and covers many of the key messages in his speech. He also presented his speech again at our monthly Webinar yesterday, so those who could not attend ij erson, could hear him live online.
“Living well with Dementia may well be, the best lived experience of my life now that I have recovered from being inhumanly treated”.
What? Inhumanely treated? How, when and why? Read on……
First, our diagnosis is delivered “Without Any Referrals” to support or disease education. No discussion of rehabilitation and No words of encouragement, No mention of hope, how diet & exercise could help. We are given absolutely nothing, zero, nada. To this day, we are still being told to get our affairs in order and, here are some drugs that might help with your symptoms, temporarily.
The end result; we are “delivered directly into suffering” from depression by the very doctors who are paid to keep us well.
Not long after this wonderful experience, most of us, are “abandoned by one or two members of our own family”.
Below, is a chart that shows exactly how we process this situation. We no longer have the ability to properly process what happened and, because we need family more than ever, we are driven even deeper into “long term & unnecessary suffering”.
It took me 1.5 years of preventable, unnecessary suffering, to fight, scratch and claw my way out of the most miserable, vegetable like existence of my life.
“THIS IS NOT JUST MY STORY”!
It’s the story of 50 million other people living with Dementia as well. This treatment is our standard treatment world wide, perhaps, due solely to ignorance.
I can confidently say “The only time” a person with Dementia “really suffers” before end stage, is when we are either unintentionally or, intentionally mistreated. Period.
Clearly, this is cruel, unusual and unacceptable abuse. Clearly this is a violation of our human rights.
When someone is caught abusing a pet, it immediately becomes a huge media/news event and people get arrested. When 50 million people are abused by our doctors and sometimes by family members, nothing is reported and no one is as much as reprimanded.
When harsh words are spoken to us, we can’t process what you said but, we “cannot forget” how you made us feel. Once again, we are unintentionally or, intentionally pushed into“constant, ongoing grief” that we cannot shake off or even come close to processing. Unexplained, it is a life sentence of pain at a time when we desperately needed the opposite.
This is the truth. This is the debilitating, mentally abusive, harmful & “INHUMANE TREATMENT” that is currently happening about every 3 seconds somewhere to virtually defenseless people.
NO, STOP & THINK about this! 50 million people today plus, “10 million more people” every year. This may well be the “Most Inhumane Tragedy of Our Century”!
Now, feel free ask me why I am such a boisterous advocate for people living with Dementia and our Human Rights.
I dare you to ask me why people with Dementia suffer.
“Living well with Dementia may well be, the best lived experience of my life now that I have recovered from being inhumanly treated”.
Today, we are sharing a post of a video made by our Chair, Kate Swaffer in 2013, which highlights too well, what almost all speakers with dementia in Chicago shared. It is rather disturbing that little has changed for people newly diagnosed with dementia in the last 10-20 years, especially at the time of diagosis, and that the lack of education of health care professionals in dementia is still so inadequate.
Some of the terms Kate uses, are not what she would say today, as like everyone, even people with dementia can learn, as well as change their minds. But, too often, dignity and respect is still lacking in dementia care, in hospitals and in residential care.
“This video interview was made for the recent South Australian Dementia Forum held on 5 December 2013. At this event, a large number of experts, health care professionals and consumers, including carers and people with dementia attended to listen, learn, and workshop about how to improve the care of people with dementia and mild cognitive impairment in the acute hospital setting. I hope it highlights some of the challenges we currently face as patients, and assists in helping others know how we would like to be treated, in particular with the same education about our disease as any other illness, and with the same respect and dignity as any other patient. Sadly, the experiences I talked about really happened. Opinions are my own.”
DAI member Christine Thelker from Canada presented on Day 2 of the ADI Conference in Chicago recently, opening the proceedings for that day. Her speech was incredibly powerful, and we are proud to be able to highlight it here, with the recording and her full speech notes. Thank you Christine for allowing us to share it; we are all very proud of you, and extremely thankful for your passionae advocacy for our rights, for better services and support, and for everyone to truly work together. The issue of living alone with dementia was also coveredwell,and it is such an important one.
Stigma – A Mark of Disgrace
I didn’t ask to have dementia. I didn’t get to choose if I want to live with it or not.
But, YOU have a choice about how to respond to me and my illness. I want to live in a world free from the stigma of you misunderstanding my truth.
Initial reactions to dementia
When you have Dementia, most friends and family don’t want to know, they don’t ask, they don’t want to see. Immediately the picture is formed in their head of someone sitting in a facility staring into space, drooling. You’ve seen the pictures many times. I still remember the conversation with family, about whether it was a good idea or not to let people know of my diagnosis. What ???
It’s better not tell the kids, they won’t understand, it will scare them. Don’t tell the adults, they might be embarrassed – Right!!!
The effects of the stigma start the minute you get the diagnosis. What is amazing to me is when someone is struck with another serious illness like MS, Kidney Disease, everyone is notified, the troops are called in to help ensure everything that can be done is done. So why does Dementia not warrant the same response?
You have friends who say “Oh don’t worry about it, it happens to me all the time.” What is happening to me is NOT happening to them!
Other people think they alreadyunderstand everything so when you try to explain what’s going on you get “I know all about it”.
One of my nursing friends said she knows and gets it because she’s worked in nursing for years so no one has to explain to her. I looked at her in disbelief and told her she didn’t have a clue. Such people act un-teachable.
The stigma also means you are no longer included in the planning of events. Or, if like myself, you were always the designated planner, now trying to orchestrate an event becomes difficult, not because of your own limitations, but because others immediately perceive your abilities are now non-existent.
A case in point: during my working career and every year since I have organized an annual luncheon for a group of nurses and other professionals in the Health Care Field. This year we had an invitation list of 248 people. Up to now I have always done all the planning and organizing on my own, this time I asked a friend to help, because I get fatigued more quickly and my eroded self-confidence makes me feel like I shouldn’t be doing these things on my own anymore.
Even though both our phone numbers were on the notice, mine listed first, all of the people who in past years have contacted me directly to RSVP now bypassed me and reported to my friend. Without them having to say it, it was because they were not comfortable with my Dementia or having a conversation with me. These were all people who should know better but only 5 or 6 actually did.
Recently a friend said that it really hit her in how others were reacting towards me. They ask how I am instead of visiting with me directly. They ask with pity, “Does she still know who you are?” When she suggested they go see me they made it clear they were not comfortable doing that. I told her they don’t realize I understand exactly what they are doing and why, but that doesn’t make it any easier to take. She said in her conversations she could tell the people who were asking about me, the person, versus me, the Dementia Patient. She said the difference was so obvious it sickened her.
Some of my friends and family have fallen by the way-side because of their own lack of knowledge and willingness to sit down and ask me what a day is like for me.
They not only hurt me because they have this view of what it means to have Dementia, it hurts them because they are missing out on some very special times with me.
They are afraid, but they are afraid because of my Dementia, what they hear and are led to believe. They don’t see me anymore, they see my disease and I feel it each and every time it happens.
It’s heartbreaking to know that even those closest to me are forming opinions and walking away from years of relationships
People with dementia: self-advocates
It is in part the responsibility of the person diagnosed with Dementia to advocate and educate, talk about and learn about their illness. It is equally the responsibility of their family and friends to learn all they can to ensure their loved one can live their best life. Without people living with Dementia being willing to step up and advocate and work with organizations, none of them could exist.
Health care professionals
The medical profession has a lot to learn as well.
On a recent visit to the emergency room I told the nurses I was having a TIA and had been instructed by my specialist to go to ER for monitoring at such a time. The nurses said they didn’t believe that was happening to me. They then went around the corner as though I wouldn’t be able to hear and decided I was likely confused by my dementia and really couldn’t know if I was having a TIA. I wanted to get out of bed and hit someone I was so upset. I was left unattended for hours, finally realized they were not taking me seriously and went home to live through it on my own.
I worked for our Provincial Health Authority for 13 years in Dementia Care. I sought out my own specialized training that was current and up to date. Many of my colleagues respected my advocating for the patients. Yet the day my diagnosis was handed to me the ‘powers that be’ said, “forget about your job…you’re done”. No one was willing to assess my abilities and see how my position could be revamped to allow me to continue working.
Telling us to go home and die…
The doctors tell me to ‘live your life while you can and get your affairs in order’. I am grateful for that piece of advice, however, statements like that take away a patient’s hope; it is a stigma that is perpetuated by the medical community who should be there to offer support. Lack of hope, at some time, effects every single person living with the illness. We need to educate the medical community to provide support from diagnosis onwards. Yes, they must be truthful about our illness but they can be honest without taking away hope. This will go a long way to help end the stigma around the illness.
YOUNGER ONSET DEMENTIA AND DISCRIMINATION
The importance of education and incidence of DISCRIMINATION is highlighted by a phone call I received about a year later, from the very people I worked for in the medical community.
“Because of your vast knowledge and skills working with Dementia Clients, would you volunteer your time to help our clients and staff?”
Yup there it is … an absolute insult. I’m not fit to work because of my dementia but I should give my knowledge away to the very people who turned their backs on me.
I am not working because of the deep-rooted stigma and entrenched discrimination that surrounds dementia even in the medical pofession, and also most other employers.
I still feel sick about a recent statement made by a bright young woman who is taking a care aid course. She was preparing to go out on her first Practicum when I enquired if she would be working with Dementia Clients.
She made this statement:
“Yes, but it won’t be a big deal because I’ve learned that people with dementia have brains that are shrivelling up and what I do doesn’t matter because they won’t know or won’t remember.”
This statement is not the fault of this young person but does show the lack of understanding and knowledge even our current medical teachers have. We desperately need more education on all levels to help the health care community realize dementia is not the person.
But this continued and all too common ignorance deepens the stigma and discrimination towards all people with dementia.
RE-INVENTING THE WHEEL 4 CHANGE
I don’t believe in re-inventing the wheel, I do believe sometimes the whole wheel needs to bereplaced.
The medical profession has to start listening to those who have Dementia for they are their best teachers. They can and should have a voice in all curriculum used and how it is taught throughout the medical profession.
Then there are the organizations who profess to help us.At one of my first coffee get togethers hosted by a lady from the Alzheimer’s Society I sat in a room with 6 other people battling dementia. She gave us rules for how the coffee time shouldgo and regulated our conversation. I asked one of the men what type of Dementia he had. I was immediately told that that was not an appropriate question and the doctors no longer tell patients what type of Dementia they have, just that they have Dementia or Alzheimer’s. I know this is false, because my doctor has been very good at keeping me informed about my particular diagnosis.
During one of our latercoffee meetings an old gentleman who hadn’t been responding turned to me and said, “I’m fascinated by you”. I laughed insurprise. Then he said, “I’ll talk to you!”
So, the dialogue began. He opened up about trying to come to terms with his dementia diagnosis. By me accepting and listening to his verbal and non-verbal cues, he found the ability to voice what he was feeling.
Because of the facilitators lack of training she was trying to run the coffee time as though it was a professional meeting and left this man out.
I also did an interview for CBC Canada at a local radio station and a bit later they created a web story about me. Someone atCBC contacted the Alzheimer’s Society to get their reaction to my interview. I had clearly stated I would not go into a care facility because they don’t promote quality of life. Her response to my opinion was to completely try to negate my perception by stating “It’s Not That Bad!” (It is! I worked in those facilities and know them too well.) When I emailed her to let her know how I felt, knowing that she had never worked or stayed in one so had no authority to make the statements she did, she did not respond.
Instead I received an email from one of her peers explaining to me how much the Alzheimer’s Society does for Dementia.
She gave me the script they give to everyone. I responded to her about the lack of willingness to even converse about the incident and I have never heard anything more.
Again, trying to bridge between the work we do and the Alzheimer’s Society does, I reached out to see how we could help each other. I told them of my speaking here today, and our fundraising efforts to help make it possible. I was told that they would not help because they want the money they raise for themselves. WHAT!!!
WE NEED A COMMON GOAL
And here I believed we had the common goal of helping people with Dementia live better.
I continue to reach out to try to work with them for the common good but I can tell you it is really difficult.
These kinds of incidents are perpetuating the stigma and causing isolation.
Other organizations are seeking funds and deciding how and what the funds are being used for under the auspiceof it being for the Dementia Clients without any input from the clients themselves. This perpetuates the agendaof the peoplemaking the decisions and has little or nothing to do with us the actual peopleliving with the disease.
LIVING ALONE WITH DEMENTIA
Is a widely untouched but very real reality for many of us. we often hear how we : shouldn’t be living alone, can’t live alone” another perception that creates more stigma. Living alone means we have to work harder to ensure we are one step ahead of our illness. Living alone provides me with the ability to make choices for myself, without having to have a caregiver who wants to help but inevitably takes away my abilities.
I also am forced to use my brain, because I cannot become dependant on any one else to catch or ensure mistakes aren’t made. It is essential we find tools and ways to stay independent from using Technology ( Alexa), to help us with reminders and appointments, to meal planning and preparing and safety issues. ( I have a life line that is good anywhere in Canada with a build in GPS). Isolation is a bigger risk factor. Staying connected with others, (for me it is with Dementia Alliance International), who together we collectively check in on each other, the education and support groups are a life saving tool for someone who is alone. It was life saving for me.
I would like to bring to your attention to DAI and its members who work to help people living with Dementia, fight the stigma by writing blogs, doing webinars and holding on-line support groups. We do this with no staff and little to no funds from any of the organizations proclaiming to support Dementia.
DAI is an under utilized Organization by all other Organizations. This has to change.
From all over the world I receive these kinds of comments on a regular basis:
Thank you Christine, you are the voice I need to hear. MB
Christine you are an eloquent writer, you invite us every day into your intimate space. We laugh, cry, grieve, and wow with you. For me your daily journaling has only made me a better caregiver. I use what you teach me to reach my clients, meet them where they are; I listen, participate, and dance. Thank you. C.F
Your blogging is helping so many people now & in the future. You are a blessing to humankind! A.P.
So in closing I would like to thank ADI for the opportunity to open today’s proceedings, it is an privilege and honour. Also thank you to my DAI family for being my beacon of light through my darkest hours, you truly saved my life. So today I ask you to help change the stigma by changing the way diagnosis is delivered, change it from there’s nothing we can do to “ here’s a nutrition & lifestyle plan, here is DAI, an organization that can offer support, education to you, and here is the information for organizations to help your loved ones.
I apologise for a late report on it; and there are more to come! Clearly, there are not enough hours in each day, or days in each week!
The Overarching Theme this year of the 11th COSP was “Leaving no one behind through the full implementation of the CRPD”, with the following Subthemes and Crosscutting themes.
1. National fiscal space, public-private partnerships and international cooperation for strengthening the implementation of the CRPD
2. Women and girls with disabilities
3. Political participation and equal recognition before the law
Promoting high-quality disability statistics and disaggregation of data by disability status for the full realization of the rights of persons with disabilities.
It was very pleasing to be given the opportunity to make various statements, the first one on Day 2 of the Civil Society Forum, the pre COSP event which I was only able to attend on the second day. It was an opportunity to ensure dementia was not forgotten as a condition causing acquired, and progressive cognitive disabilities.
My first statement, not pre-planned, but made in the discussion time after the main speakers in the aftrenoon of Day 2 of the Civil Society Forum on June 11, 2018 is listed below.
Statement 1 – Day 2 of the Civil Society Forum in New York, preceding the COSP.
My name is Kate Swaffer, a co founder and the current Chair and CEO of Dementia Alliance International. I’d first like to thank Klaus Lachwitz from the International Disability Alliance for mentioning dementia in his earlier comment, which was the first time this condition has made it into the discussions today.
I represent the 50 million people currently living with dementia, and am also one of them. The WHO states there is a new diagnosis of dementia every 3 seconds, and whilst dementia is a chronic, progressive terminal condition, it is also the leading cause of death and disability in older persons.
Yet most people in civil society do not yet see this condition as one that brings with it acquired cognitive disabilities, and I ask that we consider this today, to ensure that no one is left behind.
Dementia disproportionality impacts women and girls; more women are diagnosed with dementia, and women and girls make up more than two thirds of unpaid carers, and more than 70% are women and girls in Low and Middle Income Countries.
People with dementia are systematically excluded from rights based and equitable inclusion; the barriers are far more than dementia.
The real barriers are due to stigma, discrimination and the misperceptions about the capacity of people with dementia, and the many breaches of our most basic of human rights.
Inclusion continues to be a ‘tick box’ experience for many of us, and very often, self-advocacy requires significant self-funding, simply to ensure our rights under Articles 4.3 and 33.3, of which discussions have been exclusively focused on today.
We therefore ask for not only inclusion, but for appropriate funding from governments and NGO’s or DPO’s to ensure full and equal inclusion and participation of this cohort, to enable it. As many have speakers have stated today, this is undoubtedly our right.
Chair, CEO & Co-founder
Dementia Alliance International