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.

 

Remembering the DAI online WRAD 2019 event

In March 2019, DAI hosted an online World Rocks Against Dementia (WRAD) event, with a number of recorded and live performances. We are delighted all performers provided consent for us to publish it here, and thank them for their incredible support. Please note, all performers of our WRAD events retain full copyright.

Special thanks to Graeme Atkins and Dr Al Power:

  1. DAI member Graeme Atkins contnues to write songs specifically for, and about DAI, in spite of the additional health issues faced this year.  We thank him for his incredible support.

2.  DAI supporter, Al Power wrote and performed his song for WRAD19 specifically for our event, and we thank him for his ongoing generous support, and look forward to his presentation at our monthly “Meeting Of The Minds” Webinar, Beyond BPSD, later this month. Register now.

Please consider donating or partnering with DAI… by doing so, YOU will make a difference.

Thank you.

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

Breaking News, via ADI

Biogen and Eisai announce plans to file for market approval of Alzheimer’s drug.

Published 22 October 2019 by Alzheimer’s Disease International.

Biogen and Eisai today announced that they will file for market approval for the drug aducanumab, an investigational treatment for early Alzheimer’s disease, following new analysis showing reduced clinical decline in people with early Alzheimer’s disease.

The Phase 3 clinical studies ENGAGE and EMERGE were discontinued in March 2019 following futility analysis by an independent monitoring committee that indicated the trials were unlikely to succeed.

Following the discontinuation of EMERGE and ENGAGE, additional data from these studies became available. After reviewing this larger dataset from the Phase 3 EMERGE Study in close consultation with the U.S. Food and Drug Administration (FDA), Biogen found that aducanumab resulted in significant benefits to patients. These improvements related to cognition and function including memory, orientation, and language, as well as improving daily activities like conducting personal finances, performing household chores, and independently traveling out of the home.

The discrepancy between the earlier futility analysis of the drug and the new analysis of the larger dataset is largely due to patients’ greater exposure to high dose aducanumab.

Alzheimer’s disease is the most common form of dementia, the collective term for a range of degenerative neurological conditions that affect memory, thinking, behaviour and emotion. There is no cure for dementia and has been no new treatment for the symptoms of dementia since 2002.

If approved, aducanumab would become the first therapy to reduce the clinical decline of Alzheimer’s disease and would also be the first therapy to demonstrate that removing amyloid beta resulted in better clinical outcomes.

Paola Barbarino, Chief Executive Officer of ADI, said: “This amazing therapeutic breakthrough from Biogen is like a ray of sunshine, the first we have had for a long, long time. I cannot overemphasise the importance of this announcement today as it will give also renewed impetus to markets for the discovery of more pharmaceutical treatments. I want to stress to all those living with dementia now that aducanumab is not yet available and further tests need to be made but it is the light at the end of the tunnel we have been hoping for so long!”

Samantha Budd Haeberlein, Vice President, Late-Stage Clinical Development at Biogen, said: “We believe that these positive results for aducanumab represent a turning point for patients, caregivers, physicians, and scientists in the fight against Alzheimer’s disease. We look forward to working with the FDA and regulators around the world to find a path to make the drug available to patients. Most importantly, we envisage a future where physicians may finally have an option to offer patients to help reduce clinical decline in Alzheimer’s disease.”

Kate Swaffer, Chair, CEO and Co-Founder of Dementia Alliance International (DAI), said:

“It is with both excitement, but also some apprehension that people diagnosed with dementia receive this news. For too long the focus was only on a cure, and we have also had many failed trials. To know we may be close to a disease modifying drug, as we have for so many other chronic conditions such as diabetes, increases hope for us all.”

We are assured that Biogen will work to gain market approval for aducanumab as soon as possible, working closely with regulatory authorities, institutional review boards and principal investigators. They plan to have submit their Biologics License Application to the FDA by early 2020 and will continue dialogue with regulatory authorities in international markets.

The clinical trial for this drug is not open to new patients at present, but Biogen aims to offer aducanumab to eligible patients previously enrolled in clinical studies. ADI will continue to work closely with Biogen and Eisai, and to advocate for improvements in detection and diagnosis, availability of specialists and access to healthcare centers, to support the eventual roll-out of aducanumab.

More information on this ground-breaking new drug will be available at the 34th International Conference of ADI in Singapore in March 2020.

To answer any questions you might have, Biogen have created a website with information for patients and caregivers, previously enrolled trial participants, principal investigators and key medical experts in the U.S. at https://biogenalzheimers.com.

To find out more, read Biogen’s press release.

Where in the world is DAI?

DAI Membership Map

Where in the world is DAI?

Well, almost everywhere. We have members in 49 different, and a great many are very busy locally, nationally and internationally.

DAI members attend meetings and events at the United Nations in New York and Geneva,  the World Health Organisation in Geneva, and meetings or specific advocacy events in Lausanne, Washington, Sydney, Canberra, London, and quite literally, cities and towns all over the world. There are simply too many to list!

The voices of all people impacted by dementia matter, and our advocacy,  and for some, activism is important and is increasing, both in terms of the numbers of people with dementia and/or their families becoming involved, and the ‘volume’ of our voices.

We are being heard, but little has changed:

  1. People with dementia are still being advised to ‘get their end of life affairs in order’, and offered little if any support to live positively and independently, for as long as possible.
  2. The style of language being used in all forms of the media remains persistently negative, disabling and disrespectful; there has been little change in terms of language in the clinical and academic sectors either.
  3. Researchers and health care professionals still do not manage dementia as a condition causing cognitive and other disabilites, many even insisting on th medical model of post diagnostic care. This is in spite of the fact that the World Health Organisation Factsheets on Dementia have stated for some years now  that “Dementia is a major cause of disability and dependnce in older persons.” 
  4. People with dementia are still not provided with disability assessment or support soon after diagnosis.
  5. Our human rights are being ignored, and full and equal access to the UN CRPD as person with disabilities are still not being realised.
  6. People with dementia continue to be physically and chemical restrained in nursing homes.  The 2018 Human Rights Watch report on this in the USA is deeply distressing.
  7. Neglect and abuse within nursing homes, and also in the community is still high.
  8. Elder abuse is still especially present.
  9. When talking to people more recently diagnosed with dementia, it is clear the Dementia Friendly initiatives have done little to change what happens for them at the time of diagnosis, or after. In the broader context of civil society including health care professionals, they have rarely changed attitudes, and have barely, if at all, decreased the stigma or discrimination still being experienced.

Attitudes to dementia have not changed

In the recent  ADI World Alzheimer’s Report on Attitudes to dementia, some of the key findings of the report include:

  1. Almost 80% of the general public are concerned about developing dementia at some point and 1 in 4 people think that there is nothing we can do to prevent dementia.
  2. 35% of carers across the world said that they have hidden the diagnosis of dementia of a family member.
  3. Over 50% of carers globally say their health has suffered as a result of their caring responsibilities even whilst expressing positive sentiments about their role.
  4. Almost 62% of healthcare providers worldwide think that dementia is part of normal ageing.
  5. 40% of the general public think doctors and nurses ignore people with dementia.

These findings, in particular number 4, are deeply disturbing, and are likely a further indication of the lack of tangible impact of advocacy.

So,  if dementia advocates keep doing what has always done, and keep getting the same results, unless WE change, nothing will change. As a prominent care partner Jayne Roberts said last year, “Everything has changed, and nothing has changed.

As advocates, we need to re-asses our plan(s) of action.

Perhaps one of the key factors in why very litttle has changed, epecially for newly diagosed peopel with dementia, may be that we should ALL be working together more collaborativley, with each other, both individually and between organisations.

The challenge with that of course, is that many organisations and many individuals have differing agendas, or are more  concerned about funding. Of course, funding for all organisations is very necessary, but it is not yet adequately helping people diagnosed with dementia, or our families.

It is definitely time to do something different; just what that is yet, from the perspective of DAI, is still under review.