Category Archives: Dementia Alliance International

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.

Universal Health Coverage Day 2019

December 12  is  International Universal Health Coverage Day, a day where  we must remind governments AND health care providers that everyone has a right to health.

As background on the history of this day, in 2014, the Universal Health Coverage Coalition started to celebrate 12 December as Universal Health Coverage (UHC) Day,  commemorating the date on which the UN General Assembly officially recognised the importance of UHC. It is a United Nations-designated day, which was officially resolved on 12 December 2017.

Since then, the day has become the annual rallying point for the growing global movement for #Health4All.

Every person—no matter who they are, what health condition they have, or where they live, should be able to get the quality health coverage and services they need without facing financial hardship.

DAI knows that most people with dementia do not receive full health coverage, nor adequate post diagnostic support to live with dementia; instead, they are too often only advised to go home and prepare to die.  And for those people with dementia and their families who choose a different pathway, the cost is often crippling.

Three months after the historic high-level meeting the the United Nations General Assembly on universal health coverage (held on 23 September 2019),  we understand that dementia was not specifically included in discussions, in spite of the many years of global advocacy by DAI and ADI.

This is not a positive outcome for the more than 50 million people currently livign with dementia!

This high-level meeting, held under the theme “Universal Health Coverage: Moving Together to Build a Healthier World,” aimed to accelerate progress toward universal health coverage (UHC), including financial risk protection, access to quality essential health-care services and access to safe, effective, quality and affordable essential medicines and vaccines for all.

Yet, we know that people with dementia are still being denied access to health care, all over the world. 

Let’s all rally together to ensure everyone, including people with dementia are not left behind in the 2030 Sustainable Development Goals Agenda! 

 

Human Rights Day

On this day on which we celebrate Human Rights Day in 2019, DAI and ADI wish to invite you to join us for a webinar in 2020. The United Nations celebrates ‘tremendous activism’ of the world’s young people. DAI especially celebrates the activism of everyone who is working towards rights for people with dementia and their families. This includes many young people, as many have to care for a family member with dementia, especially in low and middle income families. Let us all celebrate everyone’s human rights. Listen to DAI Chair, Kate Swaffer on why rights are everyone’s business.

#StandUp4HumanRights #CRPD #BanChemicalRestraint #HumanRightsBelong2Everyone

Details on how to join the Webinar will follow in 2020.

 

International Day of People with Disability #IDPwD

The International Day of People with Disability (IDPwD) is a United Nations-sanctioned day, celebrated internationally on 3 December, with the aim to increase awareness of gains to be derived from inclusion of people with disability in every aspect of political, social, economic and cultural life. It is imperative that persons with dementia are included in these campaigns.

The theme this year is ‘Promoting the participation of persons with disabilities and their leadership: taking action on the 2030 Development Agenda’.

It focuses on the empowerment of people with disability for inclusive, equitable and sustainable development as anticipated in the 2030 Agenda for Sustainable Development.

  • We must ‘leave no one behind’
  • We must recognise disability as a cross-cutting issue, and
  • This must include people with dementia. 

It is imperative we all work towards ensuring that dementia is recognised by all as a condition causing acquired cognitive and other disabilities, and therefore that all people diagnosed with dementia have inalienable rights to full and equal access to the CRPD and other Conventions, and to Universal Health Coverage, including rehabilitation.

To celebrate the International Day of People with Disability this year, and as we work towards claiming our rights, alongside all other people with any disabilities, let’s watch the first DAI Side Event from the CoSP in June 2019 again.

Support people with dementia to attend the Alzheimers Disease International 34th International Conference in Singapore in March 2020. Early Bird registrations have been extended to Friday, December 13, 2019.

Support Christine Thelker – From Canada to Singapore: A Quest for Human Rights

Beyond-BPSD by Dr Al Power

This week, in our “Meeting Of The Minds” Webinar, we were honoured to listen to Dr Al Power on the urgent need to stop using the framework known as Behavioural and Psychological Symptoms of Dementia (BPSD), and to reframe how we view, and treat people with dementia. Thank you Al.

Note: Al’s slides were too large to upload on our website, so please contact us if you would like a copy emailed to you.

Donating to or partnering with us will make a difference.

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

Read our e-newsletters or regular blogs by subscribing to them.

Supporting someone with Aphasia

The National Aphasia Association in the U.S. have published a short video on the new guidelines they have produced for care partners supporting someone with aphasia.

Many DAI members are living with a form of Aphasia, in particular Primary Progressive Aphasia, so this resource may be helpful.

Download the complete guide here.

 

Our next “Meeting Of The Minds” Webinar: Beyond BPSD

Join us for our next DAI “Meeting Of The Minds” Webinar, with Dr Allen Power on looking Beyond BPSD (Behavioural and Psychological Symptoms of Dementia).

 

 

 

 

 

 

Please note: this is one event, set in a number of different time zones. Register now…


About the Webinar: In this session, Al will frame his overall view and approach to dementia and explain how the framework of ‘Behavioural and Psychological Symptoms of Dementia’ is inadequate to meet the needs of people living with the diagnosis, and actually leads to use of potentially harmful medications. Al will show how an approach focused on various aspects of well-being provides insights into root causes of distress and provides a pathway to more sustainable, drug-free approaches. Al will share stories from his experience that support the approach and also some significant data of its success in a state-wide initiative in the US.

About Al: Dr. Allen Power is an internist, geriatrician, and Schlegel Chair in Ageing and Dementia Innovation at the Schlegel—University of Waterloo Research Institute for Ageing in Ontario, Canada. He is also clinical associate professor of medicine at the University of Rochester, NY, and an international educator on transformational models of care for older adults, particularly those living with changing cognitive abilities.

Dr. Power’s book, Dementia beyond Drugs: Changing the Culture of Care was named a 2010 Book of the Year by the American Journal of Nursing. His second book, Dementia Beyond Disease: Enhancing Well-Being was released by Health Professions Press in June 2014 and the second edition of Dementia Beyond Drugs was released in 2017. Dr. Power also has a 20-year history working in culture change in aged care. He led St. John’s Home in Rochester, New York to become the world’s largest Eden Alternative member home, and also helped develop St. John’s Penfield Green House homes—the only community-integrated Green House homes in the US.

Wednesday, November 27, 2019 (USA/CA/UK/EU):

  • 10:30 am Honolulu
  • 12:30 pm Pacific
  • 1:30 pm Mountain
  • 2:30 pm Central
  • 3:30 pm Eastern
  • 8:30 pm London/Glasgow/Dublin UK
  • 9:30 pm Paris, Munich, Amsterdam, EU

Thursday, November 28, 2019 (AU/NZ/JP/SGP/TWN/CHN):

  • 6:30 am Brisbane, AU
  • 7:00 am Adelaide AU
  • 7:30 am Sydney/Melbourne/Canberra/Tasmania AU
  • 4:30 am Perth AU/Taipei//Beijing
  • 9:30 am Auckland, NZ

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

Register now…


COST TO ATTEND:

  • DAI Members/Care partners: FREE
  • Support people with dementia to attend ADI2020: $50.00 USD
  • Employed persons: DONATIONS APPRECIATED

PLEASE CONSIDER DONATING TO DAI OR BECOMING AN ASSOCIATE OR PARTNER.

WITHOUT YOUR DONATIONS, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

Support people with dementia: Donate to DAI

Become a DAI Associate or Strategic Partner today

Volunteer for DAI

THANK YOU

October Webinar: Assistance Dogs for Dementia

 

 

 

Please join us for DAI’s “Meeting Of The Minds” Webinar, on October 23/24 2019: Assistance Dogs for Dementia.

Presenters:  Professor Kevin McVilly and Phil Hazel


  • Wednesday, Octoer 23, 2019 (USA/CA/UK/EU)
  • Thursday, October 246, 2019 (AU/NZ/JP/SGP/TWN)

Please note: this is one event, set in a number of different time zones.

Registere here…

About the Webinar:

Kevin McVilly: Assistance Dogs for people with Young Onset Dementia; 3-year study –  This project documented the experience of 14 people with Young Onset Dementia and their families, over a 3-year period, of having a trained assistance dog.  The project was conducted as a partnership between Vision Australia (which trained the dogs), Dementia Australia (which supported the participants), and the University of Melbourne. We found: (1) people reported being more confident to stay at home on their own, or to go out for short walks on their own and family members felt confident to support this new found independence; (2) people engaged in exercise and physical activity, through games, walks and excursions that they might not have otherwise done prior to having the dog; (3) people reported regaining a sense of responsibility, purpose, and pride through the need to look after the daily needs of their dog; (4) people reported that the care of their dog provided opportunities to focus on issues ‘outside of themselves’, and their health; and (5) people developed new friendships and involvement in activities with others who had a dementia assistance dog, with the dog emerging as a common (non-clinically related) interest not previously available to them.
Phil Hazell: Living with Sarah: the value of assistance dogs for people with dementia; Phil will share his story of being diagnosed with younger onset dementia, and the value of having an assistance dog. His presentation will consider the benefits such as increased Self Esteem, Purpose in Life, Independence, Freedom and importantly, increased quality of life and well-being. Phil discusses some of the cha;lenges, or what he calls a ‘reality check for those considering an assistance dog, and the joys. Sarah also assists with increased organisational skills, more independence from family, friends, work place, self pride, happiness  and reduced personal and family stress. Phil’s assistance dog Sarah actively assists with tasks including:

1.Finding articles around the house such as keys, wallets, phones, TV remotes…
2.Keeps you calm in Public Transport such as Taxis, Trains, Ferry’s, Commercial flights….
3.Take you home when lost (Short Distance)
4.Identifiying you as some one that may need help
About Kevin: Keith R. McVilly is a Psychologist and the Foundation Professorial Fellow for Disability & Inclusion, in the School of Social & Political Sciences at the University of Melbourne. His work addresses the translation of research into policy and practice, with a focus on promoting the well-being and community inclusion of people with multiple and complex disabling experiences. His work reflects the centrality of relationships to well-being. Much of Keith’s research is conducted in applied settings, working directly with people with disability, families and services providers. Keith has worked as a direct support worker, a clinician and service manager, in public health services and in private practice. In Australia, Keith has previously worked as a researcher at the University of Sydney, RMIT University, and at Deakin University.  In the UK he worked at the University of Wales’ Welsh Centre for Learning Disabilities, and in the USA at the University of Minnesota’s Research Centre on Community Living.  In his spare time, Keith is a Registered Apiarist, with four bee hives in the back yard. He also keeps chickens and enjoys spending time in his greenhouse!
About Phil: Phil is a busy and enthusiastic Advocate for Dementia Australia and one of the first to be partnered with an Assistance Dog. Phil is Chair of the Dementia Australia Advisory Committee and participates in research projects. He has spoken at numerous forums and events and has actively represented people with dementia in media interviews, focus groups, program development and research projects. Phil has travelled extensively presenting at Low Vision Conferences in Japan, New Zealand, United States and Thailand. His major subject was Electronic Magnification for those living with Macular Degeneration.

Wednesday, October 23, 2019 (USA/CA/UK/EU):

  • 10:30 am  Honolulu
  • 1:30 pm    Pacific
  • 2:30 pm    Mountain
  • 3:30 pm    Central
  • 4:30 pm    Eastern
  • 9:30 pm  London/Glasgow/Dublin UK
  • 10:30 pm  Paris, Munich, Amsterdam, EU

Thursday, October 24, 2019 (AU/NZ/JP/SGP/TWN/CHN):

  • 6:30 am    Brisbane, AU
  • 7:00 am    Adelaide AU
  • 7:30 am    Sydney/Melbourne/Canberra/Tasmania AU
  • 5:00 am    Perth AU/Taipei//Beijing
  • 9:30 am    Auckland, NZ

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


COST TO ATTEND: 

  • DAI Members/Care partners: FREE
  • Support people with dementia to attend ADI2020: $50.00 USD
  • Employed persons: DONATIONS APPRECIATED

Register here…


PLEASE CONSIDER DONATING TO DAI OR BECOMING AN ASSOCIATE OR PARTNER.

WITHOUT YOUR DONATIONS, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

THANK YOU

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.

 

#Hello from the late Richard Taylor PhD

Continuing our World Alzheimer’s Month #Hello blog series, we hear from one of our remarkable founders, the late Dr Richard Taylor, by highlighting one of his presentations given at the ADI confenence in Puerto Rico in 2014, just a few moths after we launched DAI.

It is also the year we are celebrating our 5th birthday, and listening to Richard speak on the topic of not acting or looking like we have dementia continues to be a global concern.

He continues to be missed by so many…

Not Acting The Way That’s Expected, by the late Dr Richard Taylor

https://youtu.be/CvnFTR22pgw