Category Archives: Board Member of the Dementia Alliance International

Christine Thelker on why she is glad she found DAI #DAM2020

It is Day 14 of Dementia Awareness Month 2020 #DAM2020 and remarkably, we’re almost half way through for our daily vlog/blog series.

For todays post, Christine Thelker from Canada shares with us all why she is glad she found Dementia Alliance International (DAI). She agrees that DAI has been Life Changing for her, and hears it has been for so many others, and Christine advocates for other people living with dementia in Canada and all over the world.

You should also check out her new website, and recently published book, For this I am grateful.

Thank you Christine. We are all glad you found DAI

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Please join the Monday Science Podcast fundraiser to support more people with dementia like Christine.

#DAIisLifeChanging

Wally Cox: Why I’m glad I found DAI…

This September, we celebrate Dementia Awareness Month 2020 #DAM2020  with a daily series of blogs, vlogs and podcasts, many of them from DAI members talking about why they are glad they found DAI. Many tell us that DAI is Life Changing.

On Day 1, we are thrilled to kick off our series with a video of DAI board member and support group co host, Wally Cox, and his wife and B.U.B. (Back Up Brain), Patricia, sharing why they are glad they found DAI. Thank you Wally and Pat. 

Please Donate to or Partner with DAI. 

Wally Cox says #Hello

We recently had the pleasure of sitting down with one of our Board members, Wally Cox, to find out more about his experiences as a person living with younger-onset dementia. This interview is part of a new series we are doing at Dementia Alliance International (DAI) that explores the lived experience of people around the world who are living with any type of dementia.

Please donate today to our campaign to help raise funds to provide improved online support and services for our members and their families, who like Wally, all live with and are facing dementia.

This month, we are highlighting Wally’s story in honor of International Day of Families 2020.

Every year, the United Nations supports this worldwide observance on 15 May. The 2020 COVID-19 pandemic is a challenging social and global health crisis which brings into sharp focus the importance of protecting vulnerable individuals and families, as well as fostering greater equality for all.

DAI’s vision is a world where all people are valued and included.

We recognize that dementia affects not only people living with a diagnosis, but their families as well. In times of crisis, it is families who stand together, shelter one another, and care for one another. We applaud Wally and celebrate him as a person living with dementia who shows us the meaning and value of family in times of crisis.

Wally, tell us a little about yourself.

I live in northern California with my wife, Pat. We have three kids and two grandchildren and have been married since the day after Pat graduated from high school.

I was diagnosed with dementia at 62. The doctors have diagnosed me with a few different things including frontotemporal dementia and Alzheimer’s, because they are not quite sure what is going on.

Dementia runs in my family. My grandmother became senile (that’s what they called it back then) when she was in her late seventies. Fast-forward a few years and my dad – who was in his sixties – started exhibiting some odd behaviors and doing things that were seemingly out of character. It wasn’t until he got into his eighties that the doctors said he probably had dementia of some kind. That was about the time that I started having problems. And I also have a brother who has been diagnosed with Lewy body dementia.

Q: What impact has this had on your family, having so many generations of people needing care and people needing to be cared for?

My grandparents lived very simple lives and didn’t have much, so when my grandmother got sick, the burden fell on my parents to help her out. There was no support for my mother when she was caring for my grandmother. Finally, they put her into one of those homes. She was there for a few years, drifted away and then was gone.

My dad is a little bit of a different story because my mother was dealing with him by herself. When he got very hard to deal with, I built a house for him next door to me so they could live separately. They were not rich. They were middle class. Half of my mom’s income went to support my dad, and then she was living on the other half.

Years ago, I had been a caregiver for my wife. She had gotten really, really ill twice. The second time, to the point of death’s door. So when I became sick, we had already learned through experience a lot about being a person who needs care and a lot about being a person who gives care.

Q: What has that transition been like, going from care-provider to care-receiver?

After my wife got sick, I built emotional walls between me and her because I was afraid of having my heart ripped out when she died.

I felt like if I put some distance between us, I could survive losing her.

But through counseling and some really honest conversations, we got through that. In the process, I learned that I didn’t need to build walls. I needed to build connections.

When I got diagnosed with this disease, I became a person who needed care. My first reaction? To build walls again because I was ashamed of what I had.

The day I was diagnosed, she told me that she would never leave me, that she would always be there for me, and that she was with me to the end. Just like I couldn’t cure her, she can’t cure me. But she can be with me and that means a lot.

Q: In your opinion, what can we do as a nation and as a society to support and protect vulnerable people and their families in times of crisis?

I think that in the United States, we have done a pretty poor job as a government and as a society in understanding how to best do this.

The doctor who diagnosed me with dementia relocated to Palo Alto – a rather affluent area. He said that a lot of his patients, upon hearing that their mother or father has dementia, the first words out of their mouth are ‘We have got to find a [care] home for them’. As if they are disposable.

My wife’s aunt and uncle live in Tasmania. She has had a stroke and uses a wheelchair. They have all sorts of help – offered by the government – to help them stay in their home. People bring them meals. They come and help with the garden. They help with her care and get her showered because her husband is quite old – almost 90 – so he can’t do these things. The government has gone to extraordinary lengths to help them continue live in their home, which is actually a lot cheaper than if they had to go live in an elder care home.

The Tasmanian government is measuring success by being able to keep you in your home, and that does not seem to be the theme that we see in the United States.

I think that you’re measured by what you do to the least of you, how you treat the least of you: the most vulnerable, the children, the invalids, and the sick. As a person with dementia, what a lot of people don’t understand is that I still have feelings. I still have intelligence and the ability to relate. I forget things and I don’t always do things right, but I am a human being.

Q: In your experience, how does DAI make a difference in the lives of the families of people living with dementia?

As a support group co-host, I meet lots of new people.  Sometimes they come to our online support groups for a long time and sometimes just for one or two visits. But overall, the one response we have heard from people is that when they leave that meeting and are back with their families, they’re like a whole different person.

When you’re diagnosed with a fatal disease like this, you feel cast asunder and not really anchored to anything. You just kind of float around in the ocean of worry and concerns. Our support groups are a place where you can find rest. You share with your friends and you start looking forward to the next meeting, to the next week. You’ve got something coming up and you want to learn, and people make you laugh.

So, one way that Dementia Alliance International helps families is by helping people with dementia actually become better family members. I know that when I am less fatalistic and less depressed, I am easier to be around.

Also, caregivers get a break during our support group meetings. My wife knows I am occupied for that hour and a half. She gets the chance to do something else besides pay attention to me.

It also allows the caregiver to realize that dementia may not be as gloomy as first thought.

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This month, as we  highlight Wally’s story in honor of the International Day of Families, you can help Dementia Alliance International continue to represent, support and educate people living with dementia, their families, and the wider dementia community by donating to us to support more people like Wally.

In honor of International Day of Families, please show your support by donating today.

From dying, to living positively with dementia, by Kate Swaffer

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.

Introducing the 2020 Board of Directors

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 to  do 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:
Internal Affairs
External Affairs
Governance

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.

Listen to Alister Robertson in our first VodCast on why he believes in the work and vision of Dementia Alliance International…

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.

Thank you. 

Happy New Year & Happy 6th Birthday DAI lo

Welcome to 2020, and Happy 6th Birthday, and congratulations to everyone at Dementia Alliance International (DAI) for such a successful 2019.

Today we share some of our achievements for 2019, which include (but are not limited to) the following:

  • Celebrating our 5th birthday on this day last year! Special thanks to Graeme Atkins for his delightful song
  • Our continued strategic partnership with Alzheimer’s Disease International; we thank them for their continued sponsorship and support
  • 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
  • Collaboration with the Alzheimer’s Society UK and the 3 Nations Dementia Working Group on a Directory of Resources on advocacy, and a short video: The Many Voices of Dementia, released in July
  • 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)
  • Membership is increasing steadily
  • Increases to additional new free members services, including, for example two Living Alone Social peer to peer support groups
  • 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
  • The WHO launched their new Quality Rights initiative and Toolkit. DAI members Professor Peter Mittler and Kate Swaffer both contributed significantly to this on behalf of DAI
  • 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
  • Finally, please find the time to complete the DAI Survey on Advocacy and involvement in Dementia Research and Policy; Responses are needed by January 15, 2020. Thank you.  

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.

DAI thanks you all for your hard work.

With Gratitude, by Christine Thelker

Image source: Christine Thelker

To my DAI family and friends,

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.

Blessings to all

Christine Thelker
DAI Board Member

My Christmas wish is that you will support people with dementia to attend the Alzheimer’s Disease International Conference  in Singapore in March 2020 by donating today.

2019 Richard Taylor Advocates Award goes to James McKillop

James McKillop receiving the Richard Taylor Advocates Award at our online Cafe Le Brain

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.

 

Register now for DAI’s July Webinar: Dementia as a Disability

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”.

Register here…

Wednesday, July 24, 2019 (USA/CA/UK/EU):

  • 11:30 am Honolulu
  • 2:30 pm Pacific
  • 3:30 pm Mountain
  • 4:30 pm Central
  • 5:30 pm Eastern
  • 10:30 pm London/Glasgow/Dublin UK
  • 11:30 pm Paris, Munich, Amsterdam, EU

Thursday, July 25, 2019 (AU/NZ/JP/SGP/TWN/CHN):

  • 7:00 am Adelaide AU
  • 7:30 am Brisbane/Sydney/Melbourne/Canberra/Tasmania AU
  • 5:30 am Perth AU/Taipei//Beijing
  • 9:30 am Auckland, NZ

The Webinar runs for 1.5 hours. Check your time if not listed above by using this link:

COST TO ATTEND:

  • DAI Members/Care partners: FREE
  • Employed people: DONATIONS APPRECIATED
  • Full time Students: DONATIONS APPRECIATED

Register here…

Donations are appreciated.

Alzheimer’s from the Inside Out, by Dr Richard Taylor

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.

His speech notes are on the original DAI blog published after the conference