Category Archives: Human rights

DAI in Chicago #3

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”.

Jerry Wylie © 2018

Dignity & respect still lacking in dementia care

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.”

Kate Swaffer © 2013

DAI in Chicago #2


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?”

WHAT????

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. 

Leave the stigma behind.

Help us Provide the Hope

Help us thrive.

THANK YOU

SEE THE PERSON NOT THE DEMENTIA

Copyright: Christine Thelker 2018

 

Civil Society Forum – Day 2 update

In June I was representing DAI in New York attending day 2 of the pre conference Civil Society Forum , followed by the 11th Session of the Conference Of State Parties (COSP) on the Convention of the Rights of Persons with Disabilities (CRPD).

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.

Sub-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

Cross-cutting theme:

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.

Thank you.

Kate Swaffer
Chair, CEO & Co-founder
Dementia Alliance International

Dementia and Palliative Care

On Day 5 of the World Health Assembly (WHA), our Chair read out a statement with the Worldwide Hospice Palliative Care Alliance (WHPCA), also ensuring dementia was represented at the WHA, and included in the discussions on palliative care and hospice. DAI was honoured to be able to work with the WHPCA, and to read out the joint statement.

Until quite recently, it was believed peole with dementia didn’t feel pain, and we did not even qualify for palliative care or admission to a hospice unit. We now know this to be wrong, for it to be a breach of human rights, and thankfully, there has been much advocacy by many individuals and organisatons to ensure palliative care is provided for people with dementia. You can watch Kate Swaffer’s short speech below (all speeches were shortened significantly, due to the session that day running over time).

‘Tackling Dementia – It’s Everybody’s Business’

DAI is proud to support Alzheimer’s New Zealand today by promoting their upcoming biannual conference.

Alzheimer’s New Zealand is a member of our strategic partner, Alzheimer’s Disease International.

Although DAI is regularly asked to promote conferences, if we did this for every dementia related conference in the world, our site would be transformed from one for people with dementia (our members), into a global confernce program, so instead, we limit this to ADI members only, as requested.

DAI also heavily promotes the attendance  of members and their care partners to attend ADI and ADI member conferences, and does quite lot of fundraising to support attendance. It is wondeful that Alzhemer’s New Zealand have found a sponsor the the second time so that registration for peoplewith dementia and thei care parter is free again.

Alzheimer’s Scotland managed to do this for their conference this year as well, an important step to ensuring equal and full inclusion of peoiple with dementia, most who are no longer working due to the disease, or the stigma and discrimiantion dementia brings with it.

We ask that you please consider attending this very important conference, which is only held every two years.

‘Tackling Dementia – It’s Everybody’s Business’ is the premier conference focused on dementia in New Zealand.

The Conference is an opportunity to engage in a multi-sector conversation on how services for people with dementia can be transformed to reflect a world of more choice, flexibility and quick access to support; and to harness the best insights and knowledge from a range of sectors that can all help New Zealand meet the dementia challenge.

Abstracts are up to 250 words in length and if accepted, will be followed up with an oral presentation at this exciting conference.

Submissions close on Friday 22nd June 2018, and acceptance/non-acceptance will be advised by Monday 9th July 2018.

Abstract themes

We invite abstracts reflecting the programme themes:

  • Peer services – people living with dementia supporting themselves and each other
    Includes services delivered by and for people living with dementia

  • Citizenship and rights for people with dementia
    Includes dementia friendly programmes, services and standards, the review of the Convention on the Rights of Persons with Disabilities, and supported decision making

  • Effectiveness – the evidence for the right things to do
    Includes therapeutic interventions, the role of service navigation, the lived experience of dementia, biomedical developments and delivery models

  • Innovations – from the margins to the centre: New ideas and thinking
    Includes anything and everything that has the potential to transform the way we experience dementia

One of our blogs from 2015 provides guidelines on attending conferences, especially on how to write and submit an abstract, which you can read here...

If you need any assistance, please do not hesitate to contact us by email.

Mary-Beth Wighton speaks…

As promised yesterday, todays blog is of Mary-Beth ((MB) Wightons brilliant speech at the Canadian National Dementia Conference in May. Thanks to MB for advocating for us all. We are all very proud of you, and your amazing partner Dawn, and everything you are all doing in Canada.  Congratulations again for your selection onto the Ministerial DementiaAdvisory Group. You can read Mary-Beths full speech below.

Journey through the continuum of care and the healthcare system from the perspective of a person living with dementia.

I never would have imagined that at the young age of 45 I would be diagnosed with dementia.

Unbeknownst to me, my dementia journey started 4 years earlier with an initial appointment with my family doctor for memory problems and other symptoms.

My GP did an excellent job of referring me to specialists who could possibly provide insight. After a plethora of tests, doctors, and diagnosis’s including Conversion Disorder and PTSD, it would be a gerontologist who would provide the life-altering diagnosis of probable frontotemporal dementia.

The Assessment Process within my care pathway was riddled with anxiety, confusion, long-wait times, and an overwhelming lack of understanding of the next steps of care.

The diagnostic disclosure was abrupt, insensitive and simply lacked compassion.  Like hundreds of thousands of other Canadians with dementia, I was told to go home and get my affairs in order.

After weeks of waiting, we would then move into my postdiagnosis support.  The local Alzheimer Society and Community Care would sit down with my partner, Dawn, and me. We were introduced to a definition called Early-Onset.  Other than that, little support was provided in terms of appropriate education and resources.

Unlike most people living with dementia, young-onset has its own additional challenges that our healthcare system is struggling to address.  At the age of 45, my financial support to my family drastically was reduced.  Dawn, who was 39, was told she would be my primary care giver with the expectation that our daughter, who was just 17, would also be expected to contribute in care.  Dawn is expected to do this without pay and at the cost of her own career and life choices.

And through most consultations and meetings, the focus has been on my inabilities, and the stress and heartache that I will bring to my family and friends.

Stigma is drippingfrom the Canadian healthcare system and it is combined with a lack of appropriate education for all parties.

I’m worried what the next stages of my continuum of care will bring.  The fragmented care pathways and healthcare systems I experience, cannot exist.

Thank you.

 

Day 5 of the 71st World Health Assembly

Photo source: Kate Swaffer

To say it has been a busy and at times overwhelming or exciting week, is quite the understatement. Even DAI’s Back Up Brain (also my husband Peter Watt, and my B.U.B. as well) has been attending sessions on our behalf, as some I felt were of interest or benefit to DAI and our members were on at the same time I was at something else.

Peter is not a ‘conference groupie’ by nature and even dislikes the idea of institutionalised education, so taking notes, and attending some of these events, was probably not on his #BucketList (!!!), and I have no doubt he may have found many of them mildly boring and certainly very tedious for him… But he did it, for the rest of humanity!!!  😉

The image above is from one of the signs walking into the Palais de Nations (United Nations), all focused on human rights. I think this one applies well to DAI, as we are one, especially when we work together as a TEAM. When we do that, our impact is much stronger, and our 2018 Board and Action group members this year are an incredible team.

I’m TRULY proud and honoured to walk beside them all, and work for, and stand beside all of our members.

But back to the 71st WHA….

In truth, some of the sessions I attended were not only a tad boring, they were repetitious, and often had the same speakers from a previous session, sometimes even giving exactly the same speeches.

For now what I am adding for Day 5 of the WHA, is one great quote, as it is very relevant to what we do at Dementia Alliance International, plus the exact speech from yesterday, and a video of interest.

After the session late yesterday, Human Rights in Global Health: Rights-Based Governance for a Gobalizing World, I wanted to share this quote from one of the presenters, lawyer Ms Alica Ely Yamin, who is the Program Director, Health and Human Rights Initiative, from the O’Neill Institute for National and Global Health Law, made during the Q&A ater the speakers:

“It is the people who are affected by an illness or condition who MUST TAKE THE POWER, not the Bureaucrats.”

This is exactly what members of DAI have done, and the world is still getting used to it.

Hence, we will persist, we will continue to co-operate and collaborate and work together, and we will continue on until we make the change we not only want, but that we all have an absolute basic human right to.

It would take too long to write up the notes for all the sessions we attended Peter and I have attended between us, so I’ve simply added the exact speech I made yesterday, reduced to less than one minute as requested by the Chair, on Palliative care for all, including people with dementia. As mentioned in yesterdays blog, I was technically representing The World Palliative Care Alliance. This is what I said:

None of us in this room want to suffer* ourselves or see our friends and family suffer because of a lack of palliative care for ​conditions such as cancer, dementia, COPD and heart disease when cure is not possible. Palliative care is a fundamental part of Universal Health Coverage and the continuum of care for people living with non-communicable diseases. Take if from someone living with dementia, let’s make the cost effective essential package of palliative care available to those who need it.

*The use of the word suffer used in this speech, is not referring to the lied experince of dementia, but rather, to the suffering caused by the lack of access to palliative care.

I think many of you may also enjoy this video on my personal blog, based on  a presentation I gave in Brisbane on May 10, 2018, also very relevant to the World Health Assembly this week!

Kate Swaffer, DAI Chair, CEO & Co-founder

Day 2 World Health Assembly #WHA71

It seems I may have implied I would write a blog for every day of the World Health Assembly this week, to report to members and others what has been happening in Geneva. Of course, this is quite an undertaking, considering the length of the days and the energy it takes to get through them, and to write a blog. But, I am attempting to live up to my promise!

The Alzheimer’s Society UK has renamed it’s annual awareness raising week to Dementia Action Week, and it is unusual this year that this coincides with the 71st World Health Assembly and the 70th birthday of the World Health Organisation, almost blurring the topics on which to write about.

But of course, we all want Action.

We, meaning those of us diagnosed with dementia, have been waiting for ACTION for many years. Perhaps what I am sharing now, will lead to real action, for all people with any type of disability, including those caused by dementia.

Hence, this blog is not about reporting on the sessions I have been attending or involved in today specific to Day 2 of the 71st World Health Assembly, which I had promised, but rather, to report on a new venture, that DAI has been involved in, and is now a key part of.

For me personally, as I have been advocating for rehabilitation for dementia for many long years, it felt like the best day of the last 10 years of my life, since my diagnosis at the age of 49!

This new Association, The Global Rehabilitation Alliance  was born from the meeting in Geneva which I attended representing DAI in February 2017, REHABILITATION 2030: A CALL TO ACTION,  and the work and global collaboration since this forum.

Many do not yet believe rehabilitation and dementia go in the same sentence, including many rehabilitation specialists, in spite of there being very good evidence for it as far back as 2008 (possibly further, but my energy to research this any more is low!).  

The participants of the Rehabilitation 2030 meeting in 2017 committed to strengthening health and social systems to deliver rehabilitation services.  Strong global advocacy will be vital to the successful implementation of this goal, and this new group hopes to do just that.

Historically, however, rehabilitation stakeholders have been fragmented and lacked a unifying platform for strong and consistent messaging and collaboration. The Alliance aims to fill this critical gap, bringing together motivated and committed stakeholders across disciplines and spheres of influence towards a common vision. 

 The Global Rehabilitation Alliance Vision Statement:

The Alliance envisions a world where every person has access to timely, quality and user-centred rehabilitation services.

Dementia Alliance International is now a founding member of this new Association, and together, we now have an opportunity to influnce key staeholders in the value of rehabilitatin for all people with dementia. I don’t currently have the full list of the 14 founding member organisations, but it includes the World Federation for NeuroRehabilitation (WFNR), World Federation of Chiropractic (WFC), the International Society for Prosthetics and Orthotics (ISPO), the ICRC MoveAbility Foundation,  Humanity & Inclusion (HII), the World Confederation of Physical Therapy, the  Global Alliance for Muscoloskeletal Health (GMusc), and DAI!

DAI is in a unique position to ensure people with dementia are afforded the same rights to rehabilitation as all others, and can now very loudly demand rehabilitation in National Dementia Strategies or Plans, and Clinical Dementia Guidelines.

I’m sure those without dementia will not really understand the significance of this, but for me and I am sure many others living with dementia who have been denied easily accessible and affordable rehabilitation, it heralds the start of a new era, where people with invisible cognitive and other disabilites due to their dementia will also be incuded in the global push for accessible and affordable rehabilitation for all.

Onwards and upwards, together, fighting for our #Rights4All

Kate Swaffer
Demantia Alliance Inernational
Chair, CEO & Co-founder

 

The group photo below is of the 14 founding organisations, names and all orgnisations to be provided as soon as possible!

 

 

 

DAI supports Canada to develop a National Dementia Plan

 

On May 14-15, 2018, a great number of DAI members, and others with dementia attended the National Dementia Conference, hosted by the Canadian Government. I was privileged to be invited and to give a short speech, and was honoured to be on the same program as Mary-Beth Wighton and Phyllis Fehr.  Their speeches will follow in another blog very soon.

One of the highlights for me was meeting so many of my ‘online’ friends in person, and many of us said goodbye with joy, and tears.

The photo above is of the conference  delegates living with dementia, and the government officials and staff who organised it, including the Canadian Minister of Health, Ginette Petitpas Taylor, MP, who attended on both days.

She is also attending the World health Assembly in Geneva this week (we met in the corridors of the UN), so who knows, I may have an update or even a ‘selfie’ to post here!!!

We are extremely proud to announce here that Mary Beth Wighton, one of the founders of the Ontario Dementia Advocacy Group (ODAG), and current Chair was selected, along with Jim Mann, to be full members of the Ministerial Dementia Advisory Group.

Both are members of DAI as well. We have no doubt they will influence the national plan and if necessary, forcefully ensure it is embedded with rights for all. We congratulate them both, and all people living with dementia in Canada for their passion and drive.

Clearly, the most important elements of any National or Local Dementia Strategy or Plan are our basic human rights.

  • Human rights
  • Disability rights
  • Access to a timely diagnosis
  • Access to care and support that promotes independence
  • A new post diagnositic care pathway or ‘model of care’  that is a blend of health care and disAbility support
  • Rehabilitation assessment and support, at the time of diagnosis, for all people with dementia, including speech pathology
  • Disability assessment and support at the time of diagnosis
  • Access to education and care for our families and care partners
  • Education for everyone working in or impacted by dementia
  • Moving away from any form of chemical or physical restraint
  • National Risk reduction strategies

For me, this includes full support for all people with dementia to attend (any event or conference) financially, to ensure full and equal inclusion and participation, as well as full support for our cognitive and disabilities. This is a legal right, not just a human right.

The following are my speech notes and as my ‘brief’ was rather limiting, I decided to broaden the elements of my speech:

Slide 1: People with deMEntia in Research Ethical Considerations 

Thank you for the invitation to join this conference, and the panel today.

Slide 2: Global Overview of deMEntia

  • 50 million people living with dementia
  • 1 new diagnosis every 3 seconds
  • The cost of dementia is estimated to be 818 billion dollars
  • The majority of care is provided by unpaid family care partners
  • Dementia is the 7thleading cause of death globally
  • In Australia, it is now the leading cause of death in women, and the 2ndleading cause of death of all diseases
  • Dementia disproportionately effects women, in terms of the numbers diagnosed, and the number of unpaid family care partners
  • Stigma, discrimination, the deeply entrenched myths about people with dementia, and the

Overview of DAI, which was launched on January 1, 2014 by 8 people with dementia, including one from Canada:

  • Membership now spans 47 countries
  • The services and support available to members and the broader dementia community is provided free for members, and on an annual budget of less than $50,000 USD – for the first 18 months, DAI was completely self funded
  • We still self fund much of our human rights and global work, including supporting countries with their national dementia plans, such as my trip to Canada
  • Global impact on the WHO Global Dementia Action Plan, human rights and dementia being seen and treated as a disability – before we started advocating, there was little more than rhetoric about rights
  • DAI provides significant information and support to members within their own country Dementia Advisory Groups, such as the Ontario Dementia Advisory Group
  • Our members now need Alzheimer’s Associations and other organisations to partner with us, as Alzheimer’s Disease International has, to complement the services and support they provide

Slide 3: Living with deMEntia

When I was diagnosed in 2008 at the age of 49, the advice I was given was to go home, give up work, give up study, get my end of life affairs in order, and to get acquainted with aged care

The challenges of a diagnosis of deMEntia in 2018 are much the same! Most new members of DAI and others I meet with dementia around the world tell me nothing has changed. Both Mary-Beth and Phyllis have told us this was true for them as well.

Human rights and deMEntia

  • It is a breach of our most basic human rights not to be supported to live as positively as possible with dementia
  • It is no different our care partners and families receive little or no support
  • It is a breach of our human rights not to be provided with post diagnostic support that includes rehabilitation, including speech pathology when we are first diagnosed for speech and language impairments, not at the end of life when we can’t swallow and are almost ready to die
  • The WHO states dementia is the leading cause of death and disability in older people – yet so far, service providers and health care professionals do not actively support our disabilities with strategies to maintain independence for as long as possible
  • As a mature age student at a university when diagnosed, I was proactively supported to keep living my life, with proactive disability support, as my children would have been if they were living with any type of disability
  • It is imperative there is nothing about us, without us; including in research

I trademarked what happened to me 10 years ago as Prescribed Disengagement®. Unfortunately, I have hundreds of examples of anecdotal evidence this is still happening to the majority of people after diagnosis today.

It is a human rights issue that must be addressed in all national dementia plans and strategies, in the provision of health care, and in policies and services. I was the first person with dementia to speak as an invited keynote speaker at the WHO, which is a specialised agency of the United Nations in March 2015. Since then, much has happened, including the unanimous adoption of the WHO Global Dementia Action Plan: A Public Health response to dementia 2017-2015. The only truly accountable section of this Global Dementia Action Plan, adopted at the WHA in May 2017 are the cross cutting principles. I personally believe Taiwan has led the way; Canada could be next, if you get it right now.

Redefining responses to deMEntia

  • Janssen Pharmaceutical developed the term BPSD, and funded the first guidelines; they invested a lot of time and money promoting this through clinicians and researchers
  • This paradigm has likely caused worse care, ensure we do not provide person centred care, and resulted in chemical and restraints being used to manage the responses to dementia or responses to poor care that people with dementia express

Slide 4: Human Rights, Research & deMEntia

Ethical considerations of involving people with deMEntia in research clearly include causing no harm to research participants. Historically, research was done about us, through our care partners, unless it was pure scientific research for a cure or a disease-modifying drug. It is still very difficult to get ethics approvals when including people with dementia I research, which I know from personal experience as a ‘young’ researcher.

For example, in an Annual Report on stigma published in 2012, only 7% of people with dementia were included in the research participant cohort – the rest were families, hence this report does not report on the stigma we feel, but what other believe we experience, which is significantly biased by their own suffering.

Managing the gate-keepers continues t be a challenge, as the paternalistic views about us, and the subconscious beliefs and attitudes about us not having capacity or sufficient cognitive ability to be involved in society, let alone in research, is endemic. Even today, most decisions made for or about us, are deeply influenced by people without dementia. In my role as the Chair and CEO of Dementia Alliance International, I can tell yo we receive on average, 5 requests per week from researchers to engage with our members, as they cannot get either the family members to agree to involve us, or the advocacy organisations to share the opportunities for participatory research.

The wellbeing of research participants with deMEntia should be important to everyone, and especially if a trial ends or fails, no care is provided post trial for the research participants. DAI members report that when a trial is either stopped, or comes to an end, they are ‘dropped like hot pancakes’. This is unethical, and could be seen as a human rights issue as well.

People become involved in trials, not only in the hope of finding a cure for themselves, but for future generations. Research for a cure, but even more so for better care, and for risk reduction or slowing the progression of dementia are of great interest to most people currently diagnosed. We need to be supported emotional, physically and financially to be involved in research, and we need research opportunities made publicly available to us. We also need pharmaceutical companies and the media to stop selling false hope!

Involving people with deMEntia in National Dementia Plans and Strategies

Finally, in everything you do, I implore you to SEE THE PERSON, NOT ONLY THE DEMENTIA. We are human beings, with a condition causing changing capacity and functional disabilities.

Given the right support, and equal opportunities to all other persons with an acquired disability, we have a lot to contribute, not only to research, but also to society as a whole.

Thank you.

Kate Swaffer, DAI Chair, CEO & Co-founder

My slides can be downloaded here: Kate Swaffer_National Dementia Conference_Canada_May_2018