Category Archives: Dementia Alliance International

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

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 ensure that dementia is recognised by all as a condition causing acqured cognitive and other disabilities, and therefore one that people 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.

 

Elder Abuse is everybody’s business

June 15  is World Elder Abuse Awaness Day, and as more than 90% of people living with dementia are over the age of 65, it is certainly a very relevant issue for our members and their families.

Hence, like many other organisations Dementia Alliance International joins the world in speaking out against all forms of abuse, neglect, segregation, incarceration, institutionalisation and exploitation of all older adults.

Our Elders matter.

The World Health Organisation says “… Because the numbers of older persons are growing, the amount of elder abuse can be expected to grow with it. While the taboo topic of elder abuse has started to gain visibility across the world, it remains one of the least investigated types of violence in national surveys, and one of the least addressed in national action plans.

Elder abuse is a global social issue which affects the health and human rights of millions of older persons around the world, and an issue which deserves the attention of the international community.”

The WHO Key Facts on Elder Abuse state:

  • Around 1 in 6 older people experience some form of abuse, a figure higher than previously estimated and predicted to rise as populations age worldwide.
  • Rates of abuse may be higher for older people living in institutions than in the community.
  • Elder abuse can lead to serious physical injuries and long-term psychological consequences.
  • Elder abuse is predicted to increase as many countries are experiencing rapidly ageing populations.
  • The global population of people aged 60 years and older will more than double, from 900 million in 2015 to about 2 billion in 2050.

A study done by Comparitech on the prevalence of Elder Abuse in the USA is deeply concerning, and we imagine studies inmost countries are likely to be much the same.

Key findings:

Only 1 in 23.5 incidents of elder fraud are reported to authorities, according to a 2011 report from the New York City Department for the Aging and Cornell University. Here are some of the key findings at a national level, based on that figure:

  • 1 in 10 elderly people in the US fell victim to elder fraud in the last year
  • More than 5 million incidents of elder fraud occur every year in total
  • The average loss per case reported to Adult Protective Services is $2,415
  • In total, losses due to elder fraud total $27.4 billion each year
  • 38% of fraud cases target the elderly
  • Debit cards were the most common product involved with elder fraud cases (32.9%), followed by credit cards (11.6%) and bank deposit accounts (10%)

Elder abuse is not unique to any country, and in Australia there is currently a Royal Commission in to Aged Care.

An article Australia’s elder abuse scandal ‘beyond belief’ published in September 2018, the following is of great concern.

Community leaders say the true scale of elder abuse is unknown but anecdotal evidence has suggested it is a dark and deep-rooted problem.

“It is a scandal beyond belief,” says Reverend Bill Crews from Australia’s Uniting Church.

“How we can behave to one another – when we are not watched by others – is beyond belief. It started with young people. It is now with old people. We are a society where love is vanishing and the inevitable outcome of that is a lot of pain.”

The rights of persons of any age, with any condition must be upheld, and it is very clear this is not the case for people with dementia,  or indeed older persons who require any form of assistance or care.

Elder abuse is everybody’s business!

 

DAI Statement by Christine Thelker #COSP12

Chrstine Thelker

DAI Board member Christine Thelker was listed to make a Civil Society Statement on behalf of Dementia Alliance International and our Strategic Partners Alzheimer’s Disease International on Wednesday of this week during Round Table 2 of the 12thSession of the Conference Of State Parties on the Convention on the Rights of Persons with Disabilities, also the session being co-chaired by Kate Swaffer.

Round Table 2: Social Inclusion and the Right to the Highest Attainable Standard of Health

Read the full stament here which was prepared ij response to the theme of the session. Unfortunately the session was cut from 3 down to 2 hours, so she didn’t get to make the statement on the day. However, there was an opportunity to make a shorter verions of it at a Side Event yesterday, which we will share soon, including with a video of her speaking. The recording of our Side Event, Dementia: the leading cause of disability is also available online now.

Prepared Civil Society Statement:

Distinguished Chairs, speakers and delegates

Thank you for the opportunity to make this statement on behalf of Dementia Alliance International, the global voice of 50 million people living with dementia and Alzheimer’s Disease International today, who are our strategic partners.

As partnering international organisations, we collaboratively advocate for the rights of all persons with dementia and their families.

The 2030 Agenda sets out an ambitious goal vision to reach and empower those left behind.

As one of the 50 million people with dementia, I am being left behind.

Furthermore, women and girls are disproportionately affected by dementia. More women than men live with the condition, they provide the majority of care support and they also face the greatest stigma.

Women also make up 2/3 of dementia care supporters and more than 70% in lower and middle income countries. Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against, as a result of their age, sex and condition.

I am here today to ask you to help me claim my rights as a person with disabilities to empowerment and social inclusion and the highest standard of universal health care.

Articles 19, 25 and 26 of the CRPD respectively address my rights to live independently in my own home in the community, without fear of being institutionalised and segregated, due to health and disability services and support not being in place to support me to live independently.

As a person with acquired cognitive disabilities that may cause communication, personality or other changes to my capacity to function without support, I demand my right to non-pharmacological support to live with a high quality of life, and am not chemically or physically restrained.

The lack of education and awareness of dementia of health care professionals and service providers, compromises my right and ability to access adequate services. Article 25 clearly states I must be able to access health care. Currently, people with dementia are being denied this.

Secondary to my dementia, as a person with younger onset dementia, I am being further denied support to live well in my community, support to maintain independence and access to health care.

It is therefore imperative we ensure health care providers are adequately educated in dementia, and those of us living with it are supported as people with cognitive and other disabilities to live a high quality of life in our community.

This is our fundamental right.

Governments, international civil society and partners around the world must get behind this global challenge and unite for a world where no one living with dementia is left behind.

Thank you.

Christine Thelker

Board Member
Dementia Alliance International

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

Statement by DAI Chair Kate Swaffer #COSP12

Civil Society Statement presented at the Conference of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD), on June 13, 2019, presented by DAI Chair, Kate Swaffer.

Tune into the live UN TV webcast here to watch the days proceedings.

Distinguished Chairs, speakers and delegates.

Thank you for the opportunity to make this statement on behalf of Dementia Alliance International, a registered charity providing advocacy and support for people with dementia. We are also celebrating its 5th birthday.

Started in 2014 by 8 people with dementia including me, it has become the global voice of dementia.

We started with a dream, specifically for full and equal inclusion, and to be respected and valued as members of society. We also advocate for equal access to universal health care.

This has become our dream for the more than 50 million people with dementia, and each person newly diagnosed every 3 seconds.

That is also why DAI has organised a Side Event, taking place on Thursday morning.

No one and no organisation has ever represented people with dementia in this way, at this conference before.

Being diagnosed myself with dementia aged 49 taught me what the late Dr Martin Luther King Jnr.  called ‘that sense of otherness’.

I had not been stigmatised or discriminated against, except as a woman.

I had not come from a deeply marginalised group.

However as one of the 50 million people currently living with dementia who’s life was thrown in the bin at the time of my diagnosis, and still experiencing stigmas and discrimination.

Dementia is a significant global issue; it is the 7th cause of death globally, the 5th cause of death in America, and the 2nd cause of death in Australia.

However, after a diagnosis, we do not receive access to universal health health care.

We do not receive post diagnosis rehabilitation or most other allied health services to support our independence or social inclusion.

We are segregated from others when we require assisted living. 

We are institutionalised.

We are restrained physically and chemically, with no consideration of our rights.

In society, clinical practice is only provided, when supported by strong evidence based research.

However, the use of the concept Behavioural and Psychological Symptoms of Dementia (BPSD) was implemented, with no evidence based research was implemented.

This has lead to further chemical and physical restraint.

Secure dementia units, also a breach of many of our rights, including our right to freedom, are evolving into dementia villages, again with no evidence based research for their value.

Disease or disability specific villages are little different to ghettoisation of groups of people.

They are not a solution to those people with dementia who do need assisted living.

We are daily and systemically being denied our human rights.

Unfortunately, people with dementia who decide to manage their symptoms as disabilities and proactively seek disability support, are also often demonised for daring to live positively.

Approximately 5 years ago the Dementia Envoy for the World Dementia Council Dr Gillings said people with dementia may need to take to the streets and march on the steps of parliaments.

This is the beginning of that march, so that people with dementia are not left behind in the 2030 Agenda.

Thank you

Kate Swaffer
Chair, CEO & co-founder
Dementia Alliance International

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.

 

May Webinar: Learnings from patients and families by Dr Daniel Potts

DAI is delighted to announce our speaker for the May “A Meeting Of The Minds Webinar is eminent neurologist, Dr Daniel Potts. Please register now and join us for this exciting and more posiive approach to dementia.

 

Faces of Change: How Relationships with Persons Living with Dementia Have Changed My Neurology Practice

Presenter: Dr Daniel Potts, MD, FAAN, Founder, Cognitive Dynamics, Neurologist, Tuscaloosa VA, Faculty, University of Alabama

Wednesday, May 29, 2019 (USA/CA/UK/EU)
Thursday, May 30, 2019 (AU/NZ/JP/SGP/TWN)

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

Register here…

 

About the Webinar: A neurologist and care partner for his father, Lester, who became an artist after the diagnosis of Alzheimer’s disease, Daniel Potts found his life and practice have changed because of the experience with his father. He feels the experience has produced greater empathy, compassion, and understanding, which has increased his own effectiveness as a physician and educator. Dr. Potts will highlight his experience with his father, show some of Lester’s art, will speak about specific ways his practice has changed, and will give some suggestions that may be helpful for other providers. Additionally, he will discuss some realistic expectations persons living with dementia and care partners should have of their providers and looks forward to gaining knowledge and understanding from the webinar audience, as well.

About our speaker: Daniel C. Potts, MD, FAAN is a neurologist, author, educator and champion of those living with Alzheimer’s disease and other dementias and their care partners. Selected by the American Academy of Neurology as the 2008 Donald M. Palatucci Advocate of the Year, he also has been designated an Architect of Change by Maria Shriver. In 2016, he was chosen by the University of Alabama Medical Alumni Association as a recipient of the Martha Myers Role Model Award,which honors physician alumni whose lives epitomize the ideal of service to their communities. Inspired by his father’s transformation from saw miller to watercolor artist in the throes of dementia through person-centered care and the expressive arts, Dr. Potts seeks to make these therapies more widely available through his foundation, Cognitive Dynamics. Additionally, he is passionate about promoting self-preservation and dignity for all persons with cognitive impairment. He lives with his wife and two daughters in Tuscaloosa, Alabama.

Wednesday, May 29, 2019 (USA/CA/UK/EU):
11:00 am Honolulu
2:00 pm Pacific
3:00 pm Mountain
4:00 pm Central
5:00 Eastern
10:00 pm London/Glasgow/Dublin UK
11:00 pm Paris, Munich, Amsterdam, EU

Thursday, May 30, 2019 (AU/NZ/JP/SGP/TWN/CHN):
7:00 am Adelaide AU
7:30 am Brisbane/Sydney/Melbourne/Canberra/Tasmania AU
5:00 am Perth AU/Taipei TWN/Beijing
9:00 am Auckland, NZ

The Webinar runs for 1.5 hours.

Register here…

See you there!

COST TO ATTEND:

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

Collaboration across disciplines and countries, by Dr Laura Booi

Dr Laura Booi, PhD is a Gerontologist from Vancouver, Canada. For over the past decade her research has focused on improving the lives of those live with dementia, as well as those who support them. In our February 2019 “A Meeting Of The Minds” Webinar, she highlighted the work of the World Young Leaders in Dementia (WYLD). We thank Laura for her time, support of DAI, and expertise.

This is a network of young professionals in the field of dementia. WYLD members represent over 300 individuals, under the age of 40, from 30 countries, spanning across 6 continents, who are working together across disciplines and borders to develop innovative dementia solutions. The network supports the work of the World Dementia Council as well as other NGOs.

WYLD offers opportunities for professionals in the dementia space to connect and learn from others across disciplines and geographic boundaries.

Laura’s slides are available to download here: WYLD Webinar_Laura Booi PhD_DAI

For more information please visit www.WYLDementia.org

Invisible, by Paul Hitchmough

Special thanks to Howard Gordon from the UK , for liasing with Paul Hitchmough who also lives with young onset dementia to be able to show the following performance at our ecent WRAD. The video also features dementia advocate Tommy Dunne who lives with dementia, diagnosed in 2009, and his lovely wife Joyce. It was produced by Crosstown Studios in 2018.

This really wonderful song and its message is for all people with dementia. We are not, and should not be forced to stay  invisible.

Invisible, by Paul Hitchmough

Celebrating WRAD 2019

Yesterday, Dementia Alliance International  hosted their second World Rocks Against Dementia (WRAD) online event, and together, we ‘ Rocked the World Against Dementia”!

This image of Graeme Atkins, taken at an event some time ago,  highlights his ongoing love of music, and we thank him for agreeing once again to open and close our WRAD event with two live performances, albeit via zoom!

The event was hosted by our Vice Chair Jerry Wylie from the USA, and Board member Christine Thelker from Canada, who did a fantastic  job, and also made sure we have fun. Mike Belleville from the USA, also a board member was once again our producer. We thank them all for their hard work to put this event on.

DAI also sincerely thank all of the performers, who either performed new songs for DAI’s WRAD2019 event, or gave their consent to use a pre recorded performance.

DAI’s FINAL WRAD 2019 PROGRAMME:

  • We commenced with one minute of silence for our brothers and sisters in new Zealand, following the recent shootings there
  • Live performance by Graeme Atkins, Australia: Living Well With Dementia
  • Dr Al Power, USA: Happy Wanderer
  • Chris Madsen & Jenny Garbutt, Canada: In the Stillness
  • Veda Meneghetti, Australia: Living beyond my diagnosis of dementia
  • Chris Madsen & Jenny Garbutt, Canada: It shall always be
  • Vince Zangaro, USA: Better Man 
  • Raukatauri Music Therapy Centre, New Zealand: Mahana
  • Residents living Care Centre, Levin, New Zealand: Edelweiss
  • Shoutsister Choir, CanadaStand by Me
  • Dementia Drumming Group, Day Care Respite Centre, Australia: Mind to Beat, Beat to Mind -zfive Fives and We Will Rock You
  • Bay Samba, Australia: Mangueria  
  • Daniella Greenwood, Australia: Something For Kate
  • Kate Swaffer, The World: Sadness
  • Kate Swaffer, Th World: Happiness
  • Paul Hitchmouth, USA: Invisible
  • Live performance by Graeme Atkins: The Minimal Mental Test
  • Graeme Atkins (pre recorded): Happy 5th Birthday to DAI

Below is a  video called Better Man, which  we were given permission to show as part of our WRAD event yesterday. It is a beautiful true story of two young carers, and the father with demetnia that they care for. This type of unconditional love is what makes the world a better place, and we are hopeful more families will learn from this, rather than walking away from the responsibility of caring for a family member or parent…

Better Man, by Vince Zangaro