Kate Swaffer, Chair and a co founding member of Dementia Alliance International recently presented to the Houston Senior Resource Conference, a 4-day online event. Her presentation titled “From dying, to living positively with dementia” is available to watch now.
Our newly appointed Finance Officer, Tamara Claunch also presented at this event, which will be available to watch here soon.
DAI is very pleased to introduce the 2020 Board of Directors, and to inform you of DAI’s updated Governance structure.
This year, we have included two positions for people who are not DAI members, which is not different to other organisations who have staff, except that ours are not yet able to be paid. One day, we aspire to have paid roles, for staff, including members.
2020 Board of Directors:
Chair/CEO, Kate Swaffer, Australia
Vice Chair, Alister Robertson, New Zealand
Treasurer, John Sandblom, USA
Eileen Taylor, Australia
Wally Cox, USA Christine Thelker, Canada James McKillop, Scotland, UK Bobby Redman, Australia Bill Turner, Australia
Two new non member (volunteer) positions: Secretary, Sarah Yeates, Australia Finance Officer, Tamara Claunch, USA
Most other organisations usually have many staff in paid roles, but due to a lack of funding, DAI is still not in a position todo so. We remain indebted to both Sarah and Tamara for their willingness to give of their time freely, for the benefit of members and supporters of DAI.
Three Working Committees:
Within these committees, there is a permanent Finance and Fundraising Sub committee, an Action group, a Membership sub committee, and other teams (or committees) as required.
Professional Advisory Council:
This new group consists of a number of global dementia experts, researchers, medical doctors, an attorney, a CPA and others, to be announced soon.
Please note, our updated By Laws will be added to our website as soon as they have been finalised.
Finally, our Annual General Meeting (AGM) is to be moved to June each year, and the new board positions elected at this meeting will be effective in the next fiscal year. All of these changes have been approved in ine with our By Laws, and to improve our governance.
About our new Vice Chair: Alister is from Napier in New Zealand was diagnosed with younger onset Alzheimer’s in 2014. Soon after his diagnosis he was fortunate enough to attend a day programme run by Dementia Hawkes Bay, which he now attends three days a week. Alister has become an active member of DAI, having been involved in our Action Group and Board. This week, at our AGM, he accepted the nomination as Vice Chair in 2020. He is also a very active advocate for raising awareness of dementia in NZ and globally.
DAI members also wish to thank our strategic partners and sponsors, and every single person who so generously makes a donation to DAI. Without your donations and sponsorship, we could not continue to provide free membership and services to our members and supporters.
Our first strategic partnership with a national advocacy organisation; thank you Dementia Australia for your support in 2019, and your committment to continued sponsorship and support of DAI into 2020 and beyond
Representation at the World Health Assembly in May, the Rehabilitation 2030 meetings, and the Mental health Forum in October
The first DAI Side Event “Dementia: the leading cause of disability” was held at the Conference Of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD); this was the first time a Side Event dedicated to dmentia has ever been held at the COSP in New York
DAI held its first Capacity Building Workshop in Las Angeles in July
DAI was proud to become a Champion Organisation partner with StepUp 4 Dementia Research in Australia; supporting research is imperative for treatments, as well as improving care and reducing risk of dementia, If you live in Australia, please sign up.
Dr Jennifer Bute (DAI member) continues to support the ADI Alzheimer’s University, and other members in the UK also provide support to ADI, including Howard Gordon presenting on the panel, Let’s Talk about Dementia Research: Maintaining hope when trials end
A second volunteer, Tamara Claunch from Houston Texas joined long time volunteer Sarah Yeates; thanks to them both. They have also agreed to take on more formal roles at DAI, to support our board and leadership (to be anounced next week)
Updates to many of our Governance documents and By Laws, soon to be announced and shared
It took almost six years, but we now have a committed group of professionals who have agreed to be members of our Professional Advisory Committee, soon to be announced.
We introduced the new Board Of Directors for 2020 at the Annual General Meeting in November(to be announced in detail next week), congratulate them all, and thank them for their willingness to serve on the BOD
Many DAI members have also worked with the WHO on their Dementia Friendly Initiatives work, which is still in draft stage and is to be released this year
Ms. Catalina Devandas Aguilar, the Special Rapporteur on the rights of person with disabilities launched a report on the rights of older persons with disabilities at the 74th session of the General Assembly in October 2019. The report identifies and addresses specific human rights concerns faced by both people with disabilities who are ageing and older persons who acquire a disability. DAI was invited to review the draft, and able to ensure dementia was included
We have two formal publication in progress, finally, to be released sometime in 2020
Of course, there have been many other achievements by individual DAI members, working locally, nationally or globally, as always, far too many to list. However, DAI knows that advocacy takes a physical and cognitive (and sometmes emotional) toll on every person with dementia, and their care partner and family.
As December arrives I wonder yet again where the year has gone; it seems I have lost much of what’s happened over the past year that we have arrived already to the place that will bring it to an end.
I’m grateful, it looks like I will make it to see another year in. It’s a time to reflect, to sit in quiet peacefulness; I don’t dare look too far beyond today, as Dementia has taught me we never know what tomorrow is going to look like.
This past year has seen many changes for me, I feel the decline, I know I am functioning different than a year ago, but I also know staying active, being engaged, are helping me to maintain in a better fashion that I might otherwise.
Every day, I marvel that my term as a DAI board member has been completed, where has the time gone, and am honoured to sit for another term. I’m not always sure if people understand the magnitude of commitment and belief I have in DAI and all that it provides. I will be forever grateful to the founders who worked hard to create a truly unique and necessary platform for people living with Dementia.
I live alone so it truly is a life line for me, and I was thrilled that in this past year DAI has added the living alone support group, it’s a great place for people living with dementia who are on their own to talk about their particular types of challenges and have support for those sharing them.
Over the last year, I have worked hard to reach out to has many people As possible and encouraged them to join DAI, and with everyone’s continued efforts and support we are seeing DAI continue to grow. This does my heart an soul a lot of good.
I also attended a capacity building event in L.A along with other DAI members, it was a great workshop, and we have since seen and continue to see DAI evolve. The DAI board is transitioning into a governing board, which is good for the organization as a whole going forward. We have more committee’s working which engages more of our members, which is also great to see….
Together we are stronger, and as people take on new and varied rolls the diversity will keep us a healthy organization.
I’m truly proud to be part of such an organization.
I have also taken part in our continued efforts to advocate at all levels and was honoured to take part and present at the United Nations 12 annual COSP event, and then while there has been the opportunity to make a statement at the Ford Centre at the Woman and Disability Side Event. I left both of these events forever changed, and more determined to use my voice for as long as possible, and I’m so proud of the work that DAI does on behalf of all those living with Dementia in this regard.
I continue to write my blog, I have a book being published in 2020, and continue in my efforts to make a difference for all living with dementia, my next stop will be in Singapore at the Alzheimer’s Disease International Conference where I will do an Oral presentation as well as a poster presentation.
I’ve also become actively involved with Dementia Advocacy Canada as well and am thrilled that they are such strong supporters of DAI and are directing people with Dementia to DAI. I’m also involved with Trec, (which is a research program focused on developing solutions for improving the quality of care provided to nursing home … and four other research groups in an ongoing effort to make a difference.
My world is shrinking and yet growing at the same time, my life is nothing as it was, but it is rich and full because of the opportunities I have received through DAI. The friendships I have gained through DAI are some of the best I’ve ever had.
So, as Christmas approaches, I reflect. With gratitude and appreciation for all that Dementia has provided me rather than focus on all that is lost. As I reflect and look back, I realize that for all the days and times that I sit feeling like I’m not doing anything or that I’m not doing enough, in part because I forget what I’ve done, I have to remember, I do have dementia and what any of us do individually and collectively is nothing short of miraculous.
In closing I want to wish you all the very best of this holiday season and thank you for the privilege of serving such a great organization. I think 2020 is shaping up to be a year of great accomplishment for us all.
It is with great pleasure that we award James McKillop MBE from Glasgow, Scotland the 2019 Richard Taylor Memorial Advocates Award.
Although we made this announcement personally to James during our online Cafe Le Brain earlier this week, we are pleased to announce it officially today, on World Alzheimer’s Day.
James has been a Pioneer dementia advocate, having been diagosed himself with dementia in the last Century!
DAI is indeed honoured and privileged to work and walk beside him, and our members find him a constant inspiration. He motivates us all to keep going, and is always a source of great wisdom and wonderful Scottish humour.
Since joining DAI, James has continued his work locally and nationally, as well as being a very active DAI member on occasions representing us internationally, travelling with his dear wife, Maureen. James became a DAI board member some years ago, and continues to co host the UK peer to peer support group on a Monday morning, which now also meets on Thursdays.
Congratulations from us all James.
Thank you for all that you have done, and continue to do.
We invite you to register now for DAI’s “A Meeting Of The Minds” Webinar, July 24/25, 2019, with presenter and DAI Board member, Christine Thelker from Canada.
Please note: this is one event, set in a number of different time zones.
About the Webinar: DAI recently held a Side Event at the 12th Session of the Conference Of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD). This webinar will highlight the event, focusing on why dementia must be managed as a disability and why people with dementia are rights bearers as all others, such as universal heath care including rehabilitation. The panel included a group of eminent speakers, and was a rich discussion on dementia as a disability, on people with dementia as rights bearers, and of the rights of all, including people with dementia to rehabilitation and other services, and to full and equal access to the CRPD
The overarching theme was social inclusion and health, two determinants of well-being, both of which are being systematically denied to people with dementia all around the world. Dementia had never been represented formally in a Side Event ever before at the COSP, hence why DAI felt it was so important.
Our disabilities may be more invisible than many others, but we are still, even in 2019, being stigmatised and discriminated against on a daily basis, and we hope this event will be the start of change for the more than 50 million people currently living with dementia, and every person being newly diagnosed every 3.2 seconds.
As an organisation DAI continues to work towards others joining our campaign that dementia is a condition causing acquired cognitive and other disabilities, and for full and equal access to the CRPD and other Conventions, so that no one is left behind, including people with dementia. Rehabilitation, and all other health and disability services and support are essential for maintaining independence and dignity, for longer, and whilst dementia is a terminal condition, we should not all be ‘dying at diagnosis’.
About our speaker: Christine Thelker, a current board member of DAI, is from Vernon, British Columbia, Canada and at 59 says, her sense of humour has grown, since her diagnosis of dementia. She is a Board member of Dementia Alliance International, and previously worked for the Interior Health Authority for 13 years in various sites, including in dementia care and of life care. She advocates for families and patients and for better training for workers in dementia care. She also advocated for better working environments for the employees. Christine designed and taught a program to nursing students at the local colleges on end of life care and dementia care, and designed a program on unattended sorrow, which was in relation to all the deaths workers saw and the cumulative effects. She believes it has many similar effects on people diagnosed with dementia and doing more work around that. Widowed at 47 and then diagnosed with Vascular dementia at 56, Christine is still advocating, using her voice to help others. She loves working with Dementia Alliance International (DAI) and believes whole-heartedly that it helps keep her living well with her dementia. Her motto since being diagnosed is “I’m not done yet”.
It would have been the late Dr Richard Taylor‘s birthday today (perhaps tomorrow if you are in the USA), and to honour his memory, and his influence on the lives of so many people with and without dementia. we are re-posting a video of him speaking at the first ADI conference DAI members attended, in Puerto Rico in 2014.
Alzheimer’s from the inside out
Watch and listen at the 53 second point of this video… Richard talks with sincerity, but also with some cynicism about why he believed he was offered an award and invited to speak at the awards event. This is still happening to most people with dementia today.
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.”
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.
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).