Category Archives: Board Member of the Dementia Alliance International

Hello, my name is Agnes

Agnes Houston says #Hello, as we continue our series following on from World Alzheimer’s Month 2018, with more stories from our DAI members. Agnes is a long time advocate, and also a board member of Dementia Alliance International. She has campaigned for best practice and improving lives of people with dementia especially sensory issues and Dementia in Scotland and received a lifetime achievement award by Alzheimer Scotland in 2013. In 2015 was awarded an MBE and in 2016 was awarded a Churchill Fellow.

DAI’s vision is “A World where people with dementia are fully valued and included.”

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Hello, my name is Eileen Taylor

Eileen with her husband Dubhglas presenting at the STRiDE Workshop in London 2018

Following our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we are continuing with our stories, as we have many more than 30 to share with you.

September was an exceptional month for our members, some whom for the first ime, had been given a voice through these blogs.

Therefore, today, we feature DAI board member and secretary, Eileen Taylor from Australia. Eileen also co hosts the Monday Australian support group. She and her husband Dubhglas are also co founder of a local advocacy group in Brisbane, the Dementia Advocacy and Awareness Team (DAADT) . Thanks Eileen for sharing your story and for all you do for everyone with dementia.

I am still Eileen

Hello, my name is Eileen Taylor. I was diagnosed with Familial Younger Onset Alzheimer in 2009 aged 59. I was the same age my Dad when he was diagnosed with dementia back in the 1980’s. Both he and his brother in the UK died with a diagnosis of Alzheimer’s in 1994.

Back then, Alzheimer’s wasn’t really discussed, and we didn’t know how to recognise the signs. My Dad struggled to focus and sometimes couldn’t remember what happened the day before. His doctor just put this down to being eccentric and told us there was nothing to really worry about.

Throughout his long and distressing struggle with dementia, my Dad regretfully was never told the truth about his illness.

While I am now trying to live well with dementia, it was very different when I was first diagnosed in 2009. Then, I noticed I was becoming a little forgetful, but it was nothing too major. I didn’t really take too much notice until one day I saw a documentary on TV about the genetic link to dementia.

Because of what had happened to my Dad, I thought that I needed to know, so I had a genetic test to find out the truth. Not just for myself, but for my two sons and my grandkids too – I thought they had right to know if the gene was in our family.

At first the doctor didn’t think there was any reason to know, after all I was below the age when most people start to show symptoms. But I pushed for it, and I’m glad I did, because it enabled me to catch it early and to be a part of several clinical trials to find answers.

When the results of my genetic test and other assessments revealed that I did in fact have the gene and had Alzheimer’s, the news was initially “mind-blowing”. I was devastated, it was a “surely not me!” moment. I was only 59. It was the worst thing to happen to me. It was at that moment when I actually felt the pain in my chest after hearing news that broke my heart. On reflection it was like:

“Imagining you wake up one morning and your computer has been switched from a PC to a Mac, and the keyboard is suddenly Azerty. You are now trying to write a paper with that, while your hands are cuffed together, and your head is in a bucket of Jelly.”

Nevertheless, after my diagnosis, I chose to engage in, not give in, but to fight for a cure and to support other people as well as their families living with dementia. I was determined not to remain silent (as what had happened with my Dad) but to speak out and talk to people and help them to understand what it is like to live with dementia.

Parallel to the trials, the Dementia Alliance International (DAI) became my lifeline, an oasis in a sea of medical denial and indifference I had seen from some health professionals. It gave me a voice to speak out and I was accepted unconditionally into the group I joined.

Now, thankfully, I am a part of the DAI Board, serving as their Secretary, Advocate and on-line support group facilitator for the Australian and New Zealand people.

I am also an advocate and co-founder with the Dementia Awareness Advocacy Team (DAAT), as well as an advocate and active participant with Dementia Australia (DA) and serve on several dementia committees.

Doug, my husband has supported and helped me to live positively with my dementia by externalizing it.

I am not the problem, the problem is the problem, and in my case it’s Alzheimer’s dementia.

My dementia externalized is; my “Dark Cloud!” It helps me come to terms, that I am not my Dementia, my Dementia is my Dementia, I am still Eileen.

Eileen Taylor © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

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Kate Swaffer wins 2018 Richard Taylor Advocate Award

RICHARD TAYLOR MEMORIAL ADVOCATE AWARD GOES TO KATE SWAFFER IN 2018

On World Alzheimer’s Day, we usually announce the winner of the Richard Taylor Memorial Advocates Award.

However this year, we surprised the winner!!!

“We have never been prouder than to award DAI’s coveted and prestigious 2018 Richard Taylor Memorial Advocates Award, to our very own and most deserving, Kate Swaffer. The award was presented to Kate at the DAI Workshop during the 33rdADI Conference in Chicago on July 28th. It was done, without her knowledge, as in past years, she has not allowed the nominations for her to be considered, allowing other DAI members to be recognised for their work, so we decided to make a decision without her knowledge, and surprise her at the conference!

Thank You and CONGRATULATIONS Kate. You are the most steadfast, determined, generous, selfless, loving and truly inspirational leader, we have ever known. We also wish to extend a very special thank you to your husband Peter and her son’s Charles & Matthew for sharing you with us and for supporting you in every way so that you could miraculously keep paddling through all the adversity we face on our very important and lifesaving mission.

Kate has always refused this award when nominated for it over years past, always nominating someone else to receive it out of concern for “appearing self-serving”. We all knew she would do it again so, we snuck around her, taking it into our own hands. Keeping a secret from Kate as you can imagine, was no easy task but, thanks to our “Big Tuna” (Peter Watt aka BUB) and, a “top-secret board meeting”, we pulled it off without a hitch and with no less than a standing ovation. I dare say, there were many tears of joy in the room that day including, from our dear Kate.

Having been diagnosed at the young age of 49, Kate quickly began her nearly 11-year journey of advocacy that is arguably second to none in terms of achievements. Kate’s unyielding resolve, attention to detail and, tireless work ethic allows her to get things done and, sets her far apart from her peers in the spectrum of Association CEO’s and, other Dementia Advocates. Additionally, Kate’s intelligence, knowledge, grace, force when necessary and calm with which she presents, has made her one of the most sought-after speakers in our world of dementia advocacy, as well as in academic circles.

Just four and a half years ago, Kate Swaffer, Richard Taylor, John Sandblom and five others started Dementia Alliance International as a base from which to advocate for people living with Dementia. One might say “they didn’t have a pot to pee in or, a window to throw it out of” but that did not hinder their efforts in the slightest.

Their goals were and still are to eradicate stigma, improve education at every level of the care sector, spread public knowledge about dementia, have a voice at Conferences worldwide and, become a part of high level meetings both nationally and internationally. Another very important goal was to create positive change to the lived experience of its members who are living with Dementia, through peer to peer support. The results are nothing short of phenomenal considering the many obstacles we face daily, none the least of which are, we all have dementia, regularly loosing members to death or care homes, in addition to, having inadequate outside financial support.

Clearly, Kate’s brilliant leadership has literally guided, provided and afforded us the ability to navigate all the above, seemingly insurmountable obstacles with unbelievable success. To demonstrate this point, here are some of Kate’s ongoing achievements and contributions that are instrumental in DAI getting as far as it is in such a short period of time:

Kate is involved globally in human rights activism, and empowering others with dementia to live positively.  Her publication in The Australian Journal of Dementia Care (2018),“Human rights, disability and dementia”, responds to the WHO Global Plan of Action on the Public Health Response to Dementia 2017-2025.

Since speaking at the WHO First Ministerial Conference on Dementia in 2015, Kate has been key to the global advocacy of people living with dementia, and ensuring human rights are embedded into national dementia strategies. Governments invite her to work with them, including Presidents and other officials. She works with the WHO and UN, always representing DAI and the estimated 50 million peoPle living with dementia globally, and also works hard in the Low and Middle-Income Countries to support the ADI members Alzheimer’s Associations and researchers to improve dementia care. Kate is a powerful activist ensuring global change becomes a reality for everyone facing dementia, and their families.”

“Kate’s voluntary work, and incredible drive, purpose and passion to help create positive change for the 50 million people around the world currently living with dementia and their families globally, has been truly noteworthy.” (Dr. M. Funk, Department of Mental Health and Substance Abuse, WHO)

Kate, Richard Taylor is most assuredly smiling down on you and, is incredibly proud of you.

Although Kate received this award at the ADI Conference in Chicago late July, this has been published today because it is World Alzheimer’s Day, the day the DAI announcement is usually made and celebrated.

Authors: The DAI Board and various DAI members (minus Kate!!)
Image source: Peter Watt 2018

Read what 3 of our members said about Kate:

One of the nominations for Kate in 2016, which was the inaugural year of this award, said:

“Kate has been a tireless advocate for people who live with dementia that was first truly inspired after meeting Richard Taylor at an ADI conference. She has authored two books since diagnosis, attained a Masters in Dementia Care, and is a PhD Candidate in the same field. Kate is a founding member of DAI. Kate embodies the meaning of advocacy so I know of no one more worthy of the first Richard Taylor Annual Memorial Award.” (JS)

When I joined DAI, I had been broken by the inhumane way in which my diagnosis was delivered; I was a train wreck. It had taken me one and a half years to find DAI and, within 3 days, I was talking to Kate and others on my very first Zoom chat. It was Kate who made me laugh for the first time in 1.5 years, which, quite literally was the beginning of my rehabilitation and my ability to live well with dementia.  I can still remember putting Kate on a pedestal in my mind, in the beginning. I saw a true professional perhaps, beyond approach.  I quickly realized that she is one of the most approachable, down to earth, loving, caring individuals I have ever had the privilege to know and now, serve beside. I have seen firsthand, the high standards from which she leads and, I say with complete confidence; Kate Swaffer is unquestionably the highest spirited, motivational, effective, professional and ethical leader I have ever seen. (JW)

After hearing Kate speak for the first time at a convention in Chicago, a man in his late 20s in a dark suit asked if he could speak to me knowing that I knew and worked with Kate. He was clearly moved by Kate’s message, but more shaken than inspired at first. He started, “Wow – she really hates doctors!” I assumed he was one as well, so I added with narrowed eyes and a sly smile, “Yes, especially the younger ones. May I introduce you?” His eyes got big and from the surprised look that came over his face, “OH! No, I’M not a doctor!” so I asked his interest in the matter. He named the middle-eastern country he was from and said his gran had had some form of dementia for some time now, but it was handled very differently in his culture. He said that she was surrounded and sheltered by so many layers of immediate family members that all here daily needs are met and she is happy. I told him I have 9 cousins, most of whom I haven’t laid eyes on regularly since the Vietnam era. He laughed and said he had over 200 that he knew of.

I cautioned him not to quickly judge how our Kate Swaffer, or how the myriad of the world’s cultures from which dementia emerges addresses major cognitive disorders without taking off one’s own myopic spectacles of limited cultural understanding. No coherent progress in theoretical and experimental science into understanding dementia can legitimately proceed without the primary data sources necessary to inform the questions that will generate research that will most efficiently lead us to a world that manages dementia as it does other diseases: benefits and risks. Our primary data sources are the voices and linguistic clues into a person’s changing cognition from those people in early stages of dementia.

Kate Swaffer with her own powerful, tireless and simple message of “Let US speak for ourselves” has brought a 21st Century “salon” of penetrating inquiry into dementia to our community centers, doctor’s offices and conference tables – and online to the homes of those with dementia. Kate and other DAI members have helped us to re-discover ourselves, even discover our new voices, advocating to be a central part of a dialog of inclusiveness in the process of research and true change. (David L. Paulson, Ph.D., DAI member).

Congratulations Kate Swaffer

DAI’s vision is “A World where people with dementia are fully valued and included.”

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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

DAI in Chicago #1

Many of DAI’s members were in Chicago this year for ADI’s longest running international Conference on dementia.

We are proud of all of our members who presented at the conference, whether as invited Plenary speakers, as part of DAI’s panel session or in the concurrent sessions.

Everyone did a truly amazing job.

Or, like one of DAI’s co founders, John Sandblom, who presented in the Opening Ceremony! Our blog today is of Johns speech, and we thank him for representing us all so very well.

Johns speech notes are available to read below, although he did also ad lib quite a lot!

His slides are available here…

Improving quality of life for people with dementia

Slide one: Thanks to ADI for the invitation to be part of the opening ceremony for their 33rdInternational conference, and for sponsoring our stand in the Exhibition Hall. Thanks also to Alzheimer’s America for co-hosting the event.  When I first met Mr Harry Johns, the CEO of Alzheimer’s America, he said, please just call me Harry!

My sincere thanks of behalf of DAI to the Alzheimer’s Association of America for co hosting this event, and thanks also to the LEAD coalition for their sponsorship supporting our members to attend. Special thanks also to DAI members for their hard work in fundraising for us all to be able to attend this event.

As one of eight co founders of DAI, I am honoured to represent our members today, and to have been invited to speak.

DAI is an organisation which now focuses on many things, but our primary focus is on improving the quality of life for people with dementia and their families, and advocating for them globally for the realisatin of our human rights.

Slide two: This slide is one of DAI’s graphics, and is a global overview of dementia – based on data from ADI’s World Alzheimer’s Report in 2015, and the data on the WHO website this year.

Slide three: Dementia Alliance International is the global voice of dementia, and is a registered non-profit organisation whose membership is exclusively for people with a confirmed diagnosis of any type of a dementia, whose membership is now represented in 47 countries.

We seek to represent, support, and educate others living with the disease, and the wider dementia community. DAI is an organization that strives to provide a unified voice of strength, advocacy and support in the fight for individual autonomy, full and equal inclusion and improved quality of life, empowering people to live with dementia, not only die from it.

DAI has been in a strategic partnership with ADI since 2015, and we thank them for their ongoing support.

Slide four: The power of what DAI does is enormous and it helps improve the quality of life for  our members.

Slide five: DAI is very proud to it’s YouTube channel was listed in the top 20 dementia channels in2018.

Then briefly discuss how these platforms support our members through global online conversations

Slide six: DAI has made their global focus about campaigning for human rights and access to the CRPD at organisations such as the United Nations, Convention of the State Parties on the Convention of the Rights of Persons with Disabilities and the World Health Organisation.

Our mission is to empower people with dementia to live more positively with dementia, and to demand quality health care and disability rights. To fulfil this mission, we work with governments, other organisations and individual members of civil society to create change in programs, practices and policies that affect people with dementia and their families, now and into the future.

It is imperative there is NOTHING ABOUT US WITHOUT UT, and this is our undisputed HUMAN RIGHT.

Slide seven: DAI wishes everyone a successful and enjoyable conference.

Thank you.

John Sandblom
Co-founder, Board member and Treasurer
Dementia Alliance International

“Mother and Son”

DAI Board member and co host of many peer to peer support groups Maria Turner, diagnosed with younger onset dementia aged 48, presented today with her son Rhys Dalton at the ADI Conference in Chicago. We have many blogs to share, so watch this space… so far, we simply have not had the time!

Congratulations to them both for a truly courageous and candid presentation from a young career woman and her 25 year old son, who along with his fiance Kayla, they are both now her primary care partners. Their speech notes are below, and we will add their ppt slides when we upload the video.

Maria’s story

SLIDE 1

Hi! I am Maria Turner and I am so privileged and honored to be here today with my son Rhys!

SLIDE 2

The key messages today are about the impact of receiving a diagnosis of younger onset dementia at the age of 48, and how this has impacted on my son and his fiancé.

SLIDE 3

It has been truly inspirational to see the growth and development of Dementia Alliance International, and to have been a part of that growth. I am very proud that DAI has become the most important global advocacy organisation of, by and for people with dementia…

SLIDE 4

First, I must say that public speaking terrifies me!

I’d be happy to try sky-diving, but put me in front of people, I literally just freeze, so please bear with me.

I am also here today because of two things. Like so many others, I went to Dr Google, and I found Kate Swaffer and DAI, and then through attending an AFTD conference, my precious friendship with the late Susan Suchan. Susan was one of the very first people I met in person at a conference, just a month after my diagnosis.

It was her zest for life, not just a passion, but a deep intense burning for all things good for all. Her attitude & love for life will stay with me forever, and the responsibility she passed on to myself and others in some of our last conversations together.

SLIDE 5

The last thing she said to me was…

“Please stand up and fight for those who cannot and you can not give up. Find your happiness; share it with everyone. Life is to be enjoyed as the gift it was meant to be. There is too much for you to do, and remember, knowledge is only power when you share it.”

SLIDE 6

A little about me – I retired from my work as a registered nurse after 30 years. I have spent my life taking care of others, mostly in a critical care environment, and I am determined to not let my diagnosis change that. I have always been passionate about volunteering ever since I was 8 years old, and am still actively volunteering for the American Red Cross and as a very active board member for Dementia Alliance International.

Although I was diagnosed with FTD in 2016 at the age of 48 and with ALS shortly thereafter, I do live a full and positive life. I host weekly peer-to-peer support groups all over the world for DAI, and I am determined to help those who currently may not have as many resources as those of us who are attending this conference this week.

DAI and I want to see a stronger and more inclusive community by reaching out to those who are recently diagnosed so that we can emphasize the fact that we must plan for and be excited about our own futures even after a diagnosis.

If I can just walk alongside one person and prevent them from having to walk this path alone, I will know that I had a part in breaking down barriers and helping end the stigma a dementia diagnosis can and will bring.

I am here today with my son, Rhys Dalton, and we are going to talk to you about the challenges… and the rewards… of having a parent-child caregiver relationship and about the profound impact that Dementia Alliance International has had on all of our lives.

I am also here today because this is not only my story or Rhys’s story. I want everyone to use our story to improve not just the outcomes for the future of people with dementia, but also improve their quality of life today.

When Rhys came home to the U.S. after college in the U.K., it was a complete shock to him, although he quickly analyzed the situation and began to figure out his role in supporting me.

We soon came to realize that it is really important to find a life outside of dementia.

Rhys, Kayla and I are now “roommates”. We get along the way roommates do…not always in agreement, but always respectful of each other’s talents and contributions.

Although there are some things that they do FOR me, there are more things they do WITH me.

We realise our little family haven’t changed that much as except that they are being responsible for some things which enables me to live my life happily, keep pursuing my hopes & dreams with the goal of taking care of myself and fulfilling my mission to educate others.

Do not let dementia dominate your life.

Never let dementia define you, or who you are.

There are two things I want for you to take away from my presence here today. The first is for carers to become educated in being care partners instead of custodians.

Life doesn’t end with a dementia diagnosis, but a different life just begins.

It’s a life where you often have to make compromises. For examples, as a lifelong nurse who cared for others, it was hard for me to learn to be open about and ask for help.

In spite of any compromises, your different life can be as vital and exciting as YOU choose to make it.

Always remember that.

SLIDE 7

Rhys’s story

Hi! I’m Rhys Dalton and I’m Maria’s son. I am 25 years old and will be getting married to my mom’s other “care partner,” Kayla Whitten, in November.

My mum was diagnosed with young onset dementia while I was finishing up my senior year at the University of South Wales in Cardiff UK. As you might imagine, I wasn’t able to come home on the weekends too much, LOL….so I wasn’t really aware of the extent of the problems my Mum was being faced with. I got my degree in aircraft maintenance engineering and I was really looking forward to starting my career in that field as soon as I could after I got back to the states. I was 23 years old at the time  and thought I had my life pretty well planned out. I was wrong.

The past two years have been all about learning that life doesn’t always allow you to plan anything out. Kayla and I have spent a lot of time learning everything we can about Mum’s disease in general and about her needs in particular.

People often talk about the “role reversal” that caregivers and loved ones go through, using phrases such as ‘my mum has become my child’ or ‘I have had to become the parent’. As we learned more about what mum WAS able to do, our picture of our roles as “Caregivers”  changed dramatically. Now, some of this may be due to my mum’s character…she is VERY determined and believe me, once she sets her mind to something, it gets done.LOL.

Well, she was determined that she WOULD get healthy, despite what her Drs had all told her & and to be positive, so she is EXACTLY that 2 years later, I never doubted her.

It’s not that the diagnosis didn’t throw up for a loop that first year because trust me it REALLY did.

There was, and still is, a lot of trial and error about how we live and handle everything from grocery shopping to paying the bills to going away for the weekend. But we have persevered & will perserver with the intention of maintaining a good, healthy, happy and loving relationship.

We have not had the stereotypical experience, that most people expect and we do still feel like Marias son, daughter-in-law, and best friend.

We have fought to keep our roles of parent and adult child separate from dementia, so that we can focus on our love and relationships, rather having them being defined only by dementia.

We define ourselves as we always have, meaning Maria is still my mother and I am still her son, and Kayla is still her daughter in law or will be in days, but who’s counting!!

Dementia entered our world, we didn’t not invite it. It was no one’s choice.

Dementia has simply been the road we have had to go on, so we are dealing with it as positively as possible. One of the keys has been to not treat each other any differently- still act like her children and Maria still be our mother, and treat each other with love and respect.

Though I have taken on many of the physical responsibilities my mother once was able to do, it has never felt like a ’caregiver thing’ – it is just who we are now. We act like roommates, and talk about everything, including dementia, in great depth.

Kayla really treasures the time that she and mum are sharing together. Our relationships have become a lot stronger, and deeper, and in fact, because of dementia, we spend much more time together than we ever did before.

One of the biggest influences on all our lives has been DAI. Life for Mum since joining DAI has been like the difference between night and day. It gives her structure, and enriches her life through intense and very special friendships.

Through DAI, mum has been able to fulfill her goal of helping others by giving her a platform to talk to the newly diagnosed. Her responsibilities as a board member keep her sharp and focused. Peers have taken the place of her patients, and through the support groups, she is still helping so many other people.

DAI has been crucial to understanding that life was not over and there is still much to be done in research and advocacy. DAI has not only been essential to mum, but to Kayla and me as we learn to be partners with my mum in giving her the freedom she needs to live a healthy and productive life. They have become family.

Though I wouldn’t have said so earlier in my life, it helps having a determined, dare I say it stubborn parent, ol

That being said, we are all stubborn in our insistence that life is to be lived to the fullest and we are determined.

SLIDE 8 – SHARED STATEMENT – MARIATO READ THE STATEMENT

Rhys:  As Susan taught US all,  Life is to be enjoyed as the gift it was meant to be….

MARIA:

“With my son Rhys and his beautiful fiancé Kayla, both living with me, and supporting me to live positively with dementia, we have learned to love more, laugh more often, and show the world that we can all still pursue our hopes and reams, in spite on dementia.”

SLIDE 9

THANK YOU

 

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

What’s a Dark Fog or Black Cat got to do with Dementia?

 

 

 

 

 

Please join us for our next “A Meeting of the Minds” monthly online Webinar “What’s a Dark Fog or Black Cat got to do with Dementia?” presented by DAI Secretary and her husband, Eileen and Dubhglas Taylor. DAI wishes to thank them for their willignness to share with us on this interestign and important topic.

  • USA/EU/CA – Wednesday July, 18  2018
  • AU/NZ/JP/ASIA – Thursday July 19, 2018

REMINDER: It is ONE EVENT,  in numerous time zones.

About the Webinar: Eileen Taylor, DAI Secretary shares her experience of what it is like to live with dementia in a unique way by showing how she has learned to externalizeher dementia by seeing it as separate uninvited entity such as a Dark Fog. She and husband, Dubhg Taylor are interested in feedback by exploring this concept with people living with dementia to discover their opinions in a focus group.

Externalizing is an effective communication tool for helping people living with dementia and their families to understanding the daily frustrations, challenges and victories in this journey. This presentation explores the benefits of seeing dementia as a separate entity by externalizing it and lessening the potential for interfering with relationship.

Register here…

 

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

The economic and human cost of dementia

There is no doubt there is an enormous economic cost to dementia, not only to the person diagnosed, but also to their care partners, families and support persons (if they are lucky enough to have any), and to the health care sector and our governments. Our latest graphic clearly highlights this, and is based on data from the World Health Organisation (WHO) website published last year.

Apart from the economic cost of dementia, there is a significant human cost to this disease, and you can find many blogs, published journal articles, media stories (print and digital) and books on this, written by professionals, academics, care partners and yes, even many people with dementia.

Too often, the person is not seen, and only the symptoms are. Our deficits are focused on, and we don’t receive appropriate disability support nor recognition for the assets we have retained. These are often completely ignored. It is why we also campaign globally for our human rights for better support and services. We must also be supported to live more positively with dementia, from the time of diagnosis.

One of DAI’s goal is to empower other people with dementia to live more positively with it, and as such, try and reduce some of the human cost of dementia. In doing this, we promote engagement, peer-to-peer support and participation at events and educational webinars, albeit mostly online, for our members and also for the wider dementia community.

Most of our members, when they first join DAI have been advised to get their end of life affairs in order, and often, even to choose a respite day care centre and nursing home. When that happens, most people (and our families) spiral into a dark and depressing place, and become fearful and afraid of what lies ahead.

Jerry Wylie, our Vice Chair made a plea on Facebook on March 31, 1:30 PM, as follows:

“Will you take the time to read this to the end? It’s is not about me and never will be…. I wake up every day praying, that what I managed to do yesterday might make a difference in the “lived experience” for the “people” being diagnosed with dementia today and tomorrow.

Globally there is:

  • 1 diagnosis Every 3 seconds
  • 1,200 “people” diagnosed Every hour
  • 28,800 “people” diagnosed Every Day
  • 876,000 “people” diagnosed Every Month
  • 10,512,000 million “people” diagnosed Every Year

Unfortunately, “people”, society and governments seem callous and unwilling to support simple, cost effective improvements to our “lived experience”.

They prefer spending Billions upon Billions every year on finding a magic cure, whilst the largest pharmaceutical companies in the world have abandoned research due to their failure to get positive results.

In the meantime, nearly nothing beyond lip service is being done or invested in what actually helps us that are diagnosed.

The result is Needless & Unnecessary suffering for countless millions of “people”.

Dementia Alliance International “goes beyond lip service” and is changing “peoples” lived experience every single day but, nobody seems to want to help us financially. I guess it’s because we all have Dementia?

I imagine nearly every person who took the time to read this post can afford to donate “$10.00 A MONTH” so we can reach and offer weekly peer to peer support to the 10,500,000 million “people” diagnosed every year.

Here is your opportunity to help us help these people! Please click on this link and give as generously as you may. If you don’t, who will? $10.00 per month.”

THANK YOU JERRY FOR OPENING YOUR HEART TO US ALL