Category Archives: CRPD

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.

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.  

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.

Summary of the DAI Side Event at #COSP12

Left to right: Antony Duttine, PAHO/WHO; Christine Thelker, DAI Board member, Kate Swaffer, DAI Chair/CEO, Bethany Browne, Human Rights Watch, Arlene Pietratanton, ASHA, CEO and Jans Monbakken, GRA
Left to right: Antony Duttine, PAHO/WHO; Christine Thelker, DAI Board member, Kate Swaffer, DAI Chair/CEO, Bethany Browne, Human Rights Watch, Arlene Pietratanton, ASHA, CEO and Jans Monbakken, GRA

We hope the time spent by DAI members and our volunteer last week in New York attending the 12th Session of the Conference Of State Parties (COSP12) on the Convention on the Rights of Persons with Disabilities (CRPD) will  have far reaching benefits for all people with dementia, now and into the future.

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 one that people diagnosed with dementia must be provided with full and equal access to the CRPD and other Conventions, and to Universal Health Care.

Here, we highlight  the link to the live recording of the DAI Side Event, and provide the DAI Side Event Concept note and the DAI Handout provided on the day. Please share and download as you wish.

We also wish to thank the United Nations and the World Health Organisation for supporting our event, and acknowledge our co sponsors, the Australian Government, the International Disability Alliance, Alzheimer’s Disease International, Human Rights Watch, the Global Rehabilitation Alliance and the World Hospice and Palliative Care Alliance.We also thank our two sponsors, Alzheimer’s Disease International and Boehringer Ingelheim.

We especially thank Ms Catalina Devandas Aguilar, the UN Special Rapporteur on the rights of persons with disabilities for her opening remarks, and all other speakers.

It 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 intends to continue 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’.

A number of blogs were published last week, including the statements made by Kate Swaffer and Christine Thelker.

 

Join us online today for the DAI Side Event: Dementia as a disability

Please join us online today for the DAI Side Event being hosted at the 12th Session of the Conference Of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD). Dementia: The leading cause of disability.

The overarching theme is of social inclusion and health, which are two of the determinants of well-being, both of which are being systematically denied to people with dementia all around the world, including in the developed countries. UN Web TV

Watch live UN Web tv at the following times:

  • Thu, 13 Jun 2019 at 6:45 am Pacific Time
  • Thu, 13 Jun 2019 at 7:45 am Mountain Time
  • Thu, 13 Jun 2019 at 8:45 am Central Time
  • Thu, 13 Jun 2019 at 9:45 am Eastern Time – LIVE IN NYC
  • Thu, 13 Jun 2019 at 2:45 pm London, UK BST
  • Thu, 13 Jun 2019 at 3:45 pm Brussels, Belgium CEST
  • Thu, 13 Jun 2019 at 11:15 pm Adelaide, Australia ACST
  • Thu, 13 Jun 2019 at 9:45 pm Perth, Australia AWST
  • Thu, 13 Jun 2019 at 11:45 pm Sydney/Melbourne/Brisbane, Australia AEST
  • Fri, 14 Jun 2019 at 1:45 am Auckland, New Zealand NZST

Speakers

We will hear from an eminent list of speakers, on the rights of persons with any type of disability, including dementia, to full and equal access to the CRPD, and specifically on the right to rehabilitation and to Universal Health Care:

Mrs. Catalina Devandas Aguilar, UN Special Rapporteur on the rights of persons with disabilities: opening remarks

Christine Thelker, DAI Board Member:“Dementia as a disability”

Bethany Brown, Researcher, Older People’s Rights, Disability Rights Division, Human Rights Watch: “Violations of the rights of older people with dementia”

Arlene Pietranton, American Speech-Language-Hearing Association: “Rehabilitation for dementia and aphasia”

Mr. Antony Duttine, Regional Advisor in disabilities and rehabilitation, Pan American Health Organization/World Health Organisation (PAHO/WHO): “QualityRights” 

Jan Monsbakken, Global Rehabilitation Alliance: “The Rights to Rehabilitation for All”

Kate Swaffer, Dementia Alliance International, Chair/CEO: Closing remarks

Please check your time here if not listed above: https://www.timeanddate.com/worldclock/fixedtime.html?msg=DAI+CoSP+Side+Event+June+2019&iso=20190613T0945&p1=2416&ah=1&am=15

Update on the upcoming 12th session of the Conference of State Parties to the CRPD

Next week, the 12th session of the Conference of States Parties (COSP) to the Convention on the Rights of Persons with Disabilities takes place from Tuesday 11 to Thursday 13 June 2019 at UN Headquarters in New York. On Monday 10 June, a Civil Society CRPD Forum will be held to complement the Conference.

DAI will be attending both events, aiming to represent the 50 million people currently living with dementia, and each person who is  newly diagnosed every 3.2 seconds. It is a hostorical moment in the advocacy of, by and for people with dementia. That this DAI Side Event was accepted is a first, and highlighting. Dementia as a disability has never been represented  at the CoSP conference ever before.

The Themes and Sub-Themes

The overarching theme of the Conference is “Ensuring the inclusion of persons with disabilities in a changing world through the implementation of the CRPD”.  This is highly relevant to people with dementia and our families.

Three round tables will address the following themes:

  • Technology, digitalization and ICTs for the empowerment and inclusion of persons with disabilities
  • Social inclusion and the right of the highest attainable standard of health
  • Inclusion of persons with disabilities in society through participation in cultural life, recreation, leisure and sports

Highlights for the week:

  • The Civil Society Forum on Mon 10 June will address what is the current state of play; capacity building; and protection of the rights of children with disabilities.
  • Civil Society representatives speaking in all official sessions of the CoSP and co-moderating all three round-tables from Tues 11 to Thurs 13th June.
  • On Wednesday 12,  Matters related to the implementation of the Convention (item 5 (b) (ii): Round Table 2. Social inclusion and the right to the highest attainable standard of health – will be co-chaired by H.E. Ambassador Katalin Annamária Bogyay of Hungary, Vice President of the Conference and Ms. Kate Swaffer Civil Society representative from Dementia Alliance International, also Chair and CEO of DAI.
  • The Chair of the International Disability Alliance will speak at the opening of the CoSP, as a representative of the Civil Society Coordination Mechanism, and alongside UN Secretary-General
  • 100 side-events are being organised, covering a broad range of topics
  • IDA and its members will also be co-sponsoring and/or speaking at over 20 side-events, including DAI’s.
  • DAI is hosting its own and first Side Event on Dementia as the leading cause of disability on June 13, with live web  cast, International Sign and Closed Captioning services provided, to ensure accessibility to and for as many people as possible

Don’t miss watching the DAI side-event “Dementia: the leading cause of disability”.

DAI will be not only be celebrating our 5th Birthday at this exciting event,  but also ensuring dementia as a disability definitively joins the global disability stage. This event is being held on Thursday June 13, 9.45-11.00 am in Conference Room 11.

Note: We will be posting a blog with the times and link to the live webcast as soon as the link is available to share.