Category Archives: Board Member of the Dementia Alliance International

Newsflash: Environmental Design Special interest Group

Announcing the DAI Environment and Dementia Special Interest Group (ED-SiG)

As announced in our e-Newsletter earlier this week, the DAI Board of Directors has just endorsed a new group, the Environment and Dementia Special Interest Group (ED-SiG), an initiative set up by new board member, Emily Tan Tan Ong from Singapore.
It is an important initiative that DAI believes will increase opportunities for global collaboration and cooperation on a critical issue effecting people with dementia and our families.
The aim of this group is to create action following the award-winning ADI  2020 World Alzheimer’s Report, and the subsequent Design Manifesto which was initiated by the lead authors of the WAR Report, Professor Richard Fleming, Kirsty Bennett and John Zeisel.

Ps. Don’t forget  to sign up for our next Webinar,  From Rhetoric to Reality: Designing well for people living with dementia being presented by the authors and ADI’s Acting CEO, Chris Lynch. 

Purpose and role of the ED-SiG: The broad purpose of this group is to provide expert advice on and input into working towards the importance of, and more importantly, moving from the rhetoric of dementia-enabling design to the implementation of environmental design. This group proposes it is with a particular focus on dementia-enabling design in the community. Environment is more than just the built environment; it includes all the surrounding things that have a direct impact on our lives.

We believe there is a need to look into all aspects of environment including:

  1. Natural environment – how can we incorporate the natural surroundings to provide the peace and tranquility to the quality of life of those living with dementia who need the calmness from the nature as a healing therapy
  2. Built environment – how can buildings and infrastructures be designed in a manner that is accessible and usable by everyone including people with disability
  3. Rehabilitative environment – how can the environment minimise impairments impact, activity limitation and participation restrictions
  4. Communal living environment – how an environment can be intentionally created to reflect the shared values of a community
  5. Sustainable environment – how an environment is designed to promote and support a more sustainable lifestyle like Grow Your Foods, the 3Rs, No Food Wastage

Aims of the EDG-SiG:  The group is an initiative of DAI member Emily Tan Tan Ong, and was formally established in 2021, and approved by the board of Dementia Alliance International.

After years of costly and time consuming reports, multiple costly research projects, and many community initiatives such as the Dementia Friendly Communities, that none of these or other initiatives appear to have made little if any impact on improving inclusion and  access, or quality of life, the time is now for action.

This group is therefore committed to advocate for action; to move away from rhetoric, to tangible change that really makes a difference.

Members currently include:

  1. Mrs Emily Ong, Singapore (Lead)
  2. Ms Kate Swaffer, Australia
  3. Emeritus Professor Richard Fleming, Australia
  4. Professor Habib Chaudhury, Canada
  5. Mrs Christine Thelker, Canada
  6. Dr Tetsuro Ishihara, Japan
  7. Associate Professor Carol Ma, Singapore
  8. Associate Professor Shamira Perera, Singapore
  9. Professor Satoko Hotta, Japan
  10. Professor Satochi Ishii, Japan
  11. Tomofuni Tanno, Japan
  12. Dr Jan Golembiewski, Australia

If you would like to join this initiative, please contact us at [email protected] with a brief introduction about yourself, and your reasons for wanting to join.

Introducing our new Board of Directors

Introducing the incoming DAI Board of Directors, 2021-2022

The 2021 Annual General Meeting (AGM) was held this week, with a number of board members stepping down, and where four new board members were elected.

We first wish to thank and acknowledge the incredible work of our outgoing board members:

  • John Sandblom, from Iowa, USA
    DAI’s treasurer for many  years, and a co-founding board member
  • Eileen Taylor, from Brisbane Australia
  • Christine Thelker, from British Columbia, Canada
  • Bill Turner, from regional Queensland
Introducing our incoming 2021-21 Board of Directors:
  • Alister Robertson, Chair, New Zealand
  • Bobby Redman, Vice Chair, Australia
  • Diana Blackwelder, Treasurer, USA
  • Kate Swaffer, co-founding board member & CEO, Australia
  • Wally Cox, USA
  • Phyllis Fehr, Canada
  • Emily Tan Tan Ong, Singapore
  • Theresa (Terry) Montgomery, USA
  • Julie Hayden England, UK
We have included their biographis below, so you can also see the incredible expertise they bring to the board. They wil also soon be listed on the ABOUT page of our Website, with photographs to make it easier to recognise the, especially our new board members

Finally, we thank our volunteers, Sarah Yeates, Rebecca Hogan and Peter Watt, as well as Tamara Claunch (who has just stepped down).

Read their biographies on our ABOUT page.

Best wishes,

The Admin Team
Dementia Alliance International (DAI)
On behalf of the DAI Board of Directors
Dementia Alliance International

Note: we sometimes use voice recognition software for correspondence​ and newsletters; ​​hence there may be some grammatical errors or spelling mistakes, for which we thank you for your understanding.

DAI celebrates 7 years, by John Sandblom

John Sandblom, USA

In this video, co founding member John Sandblom who lives in Iowa shares his impressions as a co founding member, as DAI celebrates the first 7 years of its life as a registered charity, providing support and advocacy for the 50 million people estimated to be living with a diagnosis of any type of dementia.

Dementia Alliance International (DAI is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positively than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.

Donating or partnering with us will make a difference to the lives of people with dementia: https://www.dementiaallianceinternational.org/donate-or-partner/

Membership of, and services provided by Dementia Alliance International is FREE, and open to anyone with a diagnosis of any type of dementia.

Join DAI here: www.joindai.org

Read our newsletters or regular blogs, by subscribing here: www.dementiaallianceinternational.org

Join us to celebrate the end of 2020!

Join us to celebrate the Festive Season and the end of 2020!

This is your invitation to join us at our December Virtual Festive Season Cafe, which is being hosted by Christine Thelker, Janet Duglas and Wally Cox.  It has been a truly challenging year for everyone, and we are grateful for our DAI family and friends, and look forward to sharing this time together.

Please note, this virtual cafe is for DAI members, our families, our friends and DAI supporters. Everyone is welcome.

  • Tuesday, December 22, 2020 (USA/CA/UK/EU)
  • Wednesday, December 23, 2020 (AU/NZ/ASIA)
Reminder: this is one event, set in many time zones
The zoom link to join will be provided closer to the day.
The cafe will commence with a welcome and time for introductions, followed by a quick update on the latest DAI news from the board. It will follow with lots of fun and friendship!

Christine and Janet have planned a fun programme, including a surprise visit from Father Christmas, live music from Graeme Atkins, and a beautiful song written by DAI member James McKillop and performed by his friend, Callum McNab.

Wally will hopefully keep us all on track with his wonderful sense of humor.

Tuesday December 22, 2020 (USA/CA/UK/EU):
  • 1:00 pm PST
  • 2:00 pm MST
  • 3:00 pm CST
  • 4:00 pm EST
  • 9:00 pm GMT, UK
  • 10:00 pm CET, Germany
Wednesday December 23, 2020 (AU/NZ/ASIA):
  • 5:00 am Perth AU/Singapore, SGT
  • 7:00 am AEST, Brisbane
  • 7:30 am ACDT, Adelaide
  • 8:00 am AEDT, Sydney/Melbourne
  • 10:00 am NZDT, Auckland
Our virtual Cafe runs for up to 1.5 hours; check your time here if not listed above.

We look forward to seeing you very soon!

Christine, Janet and Wally
On behalf of the DAI Board of Directors
Dementia Alliance International

Support our important work with a donation

Note: we sometimes use voice recognition software for correspondence​ and newsletters; ​​hence there may be some grammatical errors or spelling mistakes, for which we thank you for your understanding.

 

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.

**************************************************************************

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.