All posts by DementiaAlliance

Dementia as a Disability

Announcing the DAI Side Event during 12thSession of the Conference of States Parties to the UN CRPD.

Dementia Alliance International is pleased to announce we have been accepted to host a Side Event at the upcoming 12th Conference Of State Parties (CoSP) on the Convention On the Rights of Persons with Disabilities (CRPD) at the United Nations in New York on June 13, 2019. We are honoured to have a number of co hosts supporting this event, and to be supported by the United Nations and World Health Organisation, as well as the Australian government.

Dementia: the leading cause of disability

DAI Side-event during 12thSession of the Conference of States Parties to the UN CRPD

In 2019, the Dementia Alliance International (DAI) is celebrating 5 years of existence, and at this Side Event, we recognise the progress that has been made by people with dementia in the advancement of the rights of persons with dementia, as persons living with acquired cognitive disabilities.

Through the side-event, DAI aims to highlight the progress made towards claiming their rights as persons with cognitive disabilities over the past 5+ years, aiming to highlight dementia as a disability, and identify areas of further collaboration between the members of DAI and its international partners and all relevant stakeholders, including United Nations agencies.

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.

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.

Speakers:

We are honoured to have Mrs. Catalina Devandas Aguilar, the UN Special Rapporteur on the rights of persons with disabilities to open the Side Event. Other speakers will discuss the relevance of their work to dementia as a disability; e.g. Bethany Browne from Human Rights Watch will discuss the abuse through chemical restraint of people with dementia living in USA nursing homes, from the Human Rights Watch report, “They Want Docile.”

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

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

Background and history

Dementia Alliance International (DAI) is a 501(c)3 registered charity, and is the world’s leading organisation exclusively for people diagnosed with any type if dementia. It is an advocacy and support group of, by and for people with dementia, and the “theglobal voice of dementia”currently representing members in 49 countries. DAI’s vision is “A world where people with dementia are valued and included”. DAI represents the 50 million people currently living with dementia, and the projected 82 million in 2030 and 152 in 2050. Our membership is currently represented in 49 countries around the world, including many members living in the Low and Middle Income Countries.

From grassroots advocacy to global activism, DAI seeks to claim the human rights of people with dementia and ensure that our rights as disabled persons are secure. Dedicated to empowering all people to live a better life with dementia, DAI believes in the power of energy, creativity, human connections and joy as the shared inheritance of every human on earth. Our members advocate and educate locally, nationally and internationally. We speak at professional conferences and lead vast online communities of people. We work to reduce stigma and discrimination, bringing awareness to the truth that life can be well-lived beyond any diagnosis or disability, including dementia.

Concluded by the OECD in 2015, “people with dementia receive the worst care of any disease in the developed world” and indeed, DAI members report, anywhere in the world.

While it is challenging to fix serious problems that are global in scale, we have done it before. As a species, we have eradicated smallpox and polio. We have increased global life expectancy and we have reduced global childhood mortality rates.

The challenges we face are big, but this will not drive us to inaction and hopelessness, for we each carry the burden of making things better in our own chosen sphere.

We didn’t choose to have dementia, but we do choose to work towards a world where we have equal social inclusion as all others, and full and equal access to universal health care, including rehabilitation, and proactive disability assessment and support immediately after a diagnosis.

At Dementia Alliance International, we believe it is imperative to change misconceptions about dementia, address stigmas associated with it, discourage psychological and physical abuse of all disabled people, and demand that the voices of people with dementia be included in decisions directly affecting us. The stigma and discrimination experienced by people with dementia – and their families – is very real and incredibly disabling. Countering the myth that people with dementia go from the point of diagnosis, immediately to the end-stages of the disease, is extremely important.

At present, people with dementia are disenfranchised upon diagnosis. Our legal and social status is immediately reduced, and our human rights are stripped away.  We are excluded from equal and full inclusion in public spaces and activities and even viewed by some as “less than human”. Much of our work centers on reducing stigma and discrimination, bringing awareness to the truth that life can be well lived beyond any diagnosis – including dementia. Disability rights are another important arena. Like other disabled persons, we have the right to equal and full inclusion in public spaces and activities. And with appropriate disability support, we can continue to live meaningful and positive lives.

The misguided under-estimations of the potential of people with dementia continue to create oppressive and humiliating barriers to our full and equal engagement in society, and the continuing major breaches of our human rights through the systemic and endemic overuse of chemical and physical restraints, and though segregation and institutionalisation continue. Hence DAI members individually and collectively advocate for rights, and educate locally, nationally and internationally, at professional conferences, and in the vast online communities they have built, so that we are not reduced in legal or social status. DAI is dedicated to empowering all people live a better life with dementia.  It advocates for the right to equal and full inclusion in public spaces and activities.

DAI Chair, Kate Swaffer was an invited keynote speaker at the WHO First Ministerial Conference on Dementia in March 2015, and made rights and access to Universal Health Coverage the focus of her presentation. DAI’s global focus has been on human rights and disability rights, and we continue to work with organisations such as the World Health Organisation (WHO), the United Nations and others, to ensure that since the WHO Global action plan on the public health response to dementia 2017 – 2025, was adopted, national, regional or local dementia plans will include human rights, and people with dementia have full and equal access to the CRPD.

DAI is working hard towards ensuring dementia is not left behind in the 2030 Agenda, and its Sustainable Development Goals’ are not only achieved, but that dementia is also realised as a condition causing cognitive disabilities in its own right.

Co-sponsors: the Australian Government, the International Disability Alliance, Human Rights Watch, Alzheimer’s Disease International, Worldwide Hospice Palliative Care Alliance, and the Global Rehabilitation Alliance.

Download the event flier here…

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

Report: Forgotten in a crisis

ADI, GADAA and Alzheimer’s Pakistan launch report on Dementia in Humanitarian Settings
Forgotten in a crisis: Addressing dementia in humanitarian response, published yesterday by the Global Alzheimer’s and Dementia Action Alliance (GADAA) with ADI and Alzheimer’s Pakistan, has revealed that people with dementia are being ignored in times of humanitarian crisis.
This report contributes to a growing awareness of the need to address disability in humanitarian settings and is the first report to specifically highlight dementia.  
While there are guidelines in place to mandate inclusive support for people at-risk, they are rarely being implemented and do not currently go far enough to meet the specific needs of people with dementia, according to the report.
Paola Barbarino, CEO of Alzheimer’s Disease International, said: 
There are 50 million people living with dementia globally, 60 per cent in low and middle income countries where diagnosis is low and humanitarian emergencies are widespread. These people are currently ignored in emergency response planning. We are calling on all agencies to increase awareness and to adapt strategies, to better recognise the needs of this often hidden group.”

Dementia Alliance International was pleased to contribute a small part to this very important report.

A new type of dementia identified?

A paper published in the journal Brain (30 April) has identified a brain disorder that appears to mimic the clinical features of Alzheimer’s disease. Known as LATE (Limbic-predominant Age-related TDP-43 Encephalopathy) it appears to be linked to the accumulation of a protein, TDP-43, in the brain, while Alzheimer’s disease is more commonly linked to two other brain proteins – amyloid and tau.
The authors of the report say that LATE appears to affect the “oldest old”, people over 80, based on work that looked at evidence from thousands of post-mortem results.
It raises interesting and challenging questions around diagnosis; how to test people non-invasively and cost effectively. It raises questions around clinical trials and ultimately it will pose questions around treatment options. It is not yet known how many people may have LATE.
Dr Alireza Atri, Co-Chair of ADI’s Medical & Scientific Advisory Panel, said “This timely consensus workgroup report supports an accumulating evidence-base regarding the importance of determining the independent and inter-related contributions of multiple disease pathways to late-life cognitive decline, impairment and dementia.
Future treatments are unlikely to be highly effective unless we learn to more accurately diagnose and use combinations of targeted and personalized approaches to impact all the factors relating to aging, Alzheimer’s disease, and non-Alzheimer’s disease that often combine to cause symptoms in an older individual.” 
Kate Swaffer, Chair and CEO, Dementia Alliance International said, “This latest research is of great interest to Dementia Alliance International members, as many are regularly challenged about the validity of their own diagnoses, especially those living with younger onset dementia.
Whilst it relates to older adults with cognitive decline, the more research that supports a more accurate diagnosis of AD, will not only lead to more targeted research and hopefully treatments, it will ultimately be reflected in increasing the accuracy of all diagnoses of dementias.”
Dr Atri offers a more detailed review of the report, Limbic-predominant age related TDP-43 encephalopathy(LATE): consensus working group report below:
“Never Too LATE to Improve Our Understanding of Conditions and Diseases that Cause Late-Life Cognitive Impairment and Dementia.
This report, a Workgroup diagnostic guideline paper (Nelson et al. Brain 2019) , provides an important pathway to advance understanding and research on conditions and diseases that impact late-life cognitive decline and dementia syndromes (changes in cognitive abilities sufficient to impact daily functions and behavior).
This important evidence- and expert-based research formalizes terminology and provides consensus guidelines for diagnostic and staging criteria for a protein-related disease (aka. proteinopathy) due to TDP-43 protein that has been, in the last 15-25 years, increasingly reported to produce Alzheimer’s disease (AD)-like dementia symptoms by causing conditions such as Hippocampal Sclerosis and Age-related TDP-proteinopathy.
The Workgroup coined the term LATE (Limbic-predominant Age-related TDP-43 Encephalopathy) for such TDP-43 proteinopathy conditions that cause cognitive impairment and dementia (CID) and provides evidence to support that LATE is a disease that may cause or contribute to CID in 15-20% of older-old individuals (those older than 80-85 years of age).
In the last two decades, multiple lines of evidence, particularly from long-term brain donation autopsy research studies, have made it increasing clear that cognitive and behavioral changes and symptoms in older-old individuals, that are sufficient to produce CID syndromes, are due to a confluence of multiple conditions that impact cognitive functions.
While brain changes due to AD, defined by the presence of amyloid-beta protein plaques and tau-protein tangles, are commonly observed in autopsy studies, there is likely more often an interaction of several conditions, such as vascular brain injury (VBI), and other proteinopathies such as those caused by alpha-synuclein proteinopathy (Lewy Body Disease) and TDP-43 proteinopathy (LATE), that combine to produce symptoms in the older-old.
Therefore, in a substantial number of older-old individuals, what can appear in the clinic to be very similar to CID symptoms due to Alzheimer’s can be caused by LATE or by the combined effects of LATE with AD and related conditions. As well as sharing common symptoms with typical dementia due to AD, particularly problems with learning and forming new memories, the report also outlines how LATE shares some common risks with AD (such as age and genetic features) and findings on brain imaging, such as shrinkage of hippocampus and medial temporal lobes.
The Workgroup’s formalized recommendations and diagnostic criteria are important to promote awareness in the medical, scientific, and patient communities and in the general public. The guidelines are also crucial to stimulate interdisciplinary research to better diagnosis and treat LATE during life, including by use of biomarkers to exclude AD (e.g. spinal fluid or PET scan signatures related to AD), and the development of specific LATE-related biomarkers, and prevention and treatment approaches.
It’s never too late to learn and be smarter and wiser about investigating multi-factorial approaches to combat the complex and inter-related conditions and diseases that causes CID.”

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

Webinar: Staying engaged without driving

Please join us for this important presentation and conversation, our April 2019 “A Meeting Of The Minds Webinar”

Title: Staying engaged without driving

Presenters: Dr Jacki Liddle and Dr Theresa Scott

  • Tuesday April 23, 2019
  • Wednesday April 24, 2019

NOTE: This is one event in different time zones.

Register  here…

About the Webinar:
Some people say that stopping driving is the “hardest thing” they face in living with dementia. Our research has explored people’s experiences related to stopping driving, the involvement of health professionals and key times when support is needed. The talk will draw on this to cover ways to prepare, decide and adjust emotionally and practically to life without driving. It will highlight ways to stay engaged in the community and in meaningful activities. It will also show advice for health professionals and family members for ways they can assist people who are retiring from driving. The CarFreeMe program is an example of an education and support program helping people with stopping driving, and we will give an overview of this and ways people could get involved.

About our speakers:
Jacki: Dr Jacki Liddle is an Occupational Therapist and Research Fellow. She is involved in researching life transitions, ways of supporting community engagement and ways of measuring meaningful outcomes. Her research with people living with dementia includes codesigning technology and supporting community mobility, particularly after driving cessation.

Theresa: Dr Theresa Scott is an NHMRC-ARC Dementia Research Development Fellow and a Psychologist at The University of Queensland. Her fellowship research is focused on the complex issues around dementia and driving. She is particularly interested in how driving cessation might be better managed in primary care settings and in supporting people living with dementia who are transitioning to retirement from driving

Tuesday, April 23, 2019 (USA/CA/UK/EU):

11:00 am Honolulu
2:00 pm Oregon Portland/San Francisco USA/Vancouver CA
4:00 pm Des Moines/Chicago USA
5:00 pm New York USA/Toronto CA
10:00 pm London/Glasgow/Dublin UK
11:00 pm Paris, Munich, Amsterdam, EU

Wednesday, April 24, 2019 (AU/NZ/JP/SGP/TWN/CHN):

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

The Webinar runs for up to 1.5 hours.

Check your time if not listed above by using this link:

See you there!

COST TO ATTEND:

  • DAI Members or their care partners: FREE
  • Employed people: $50:00 USD
  • Full time Students: $25:00 USD

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

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

Getting in the mood for WRAD2019!

This video is of DAI member, Graeme Atkins from Australia, who wrote and performed this song especially for our 5th birthday this year.  Very special thanks to Graeme, and also to his wife who supports him to live so positvely with dementia.

We are posting it here today, to get us in the mood for our World Rocks Against Dementia online event, being held on March 22/23, 2019.  Register here now, if you haven’t already done so!

Happy 5th Birthday to DAI

Survey on Universal Health Coverage

The Non Communicable Diseases Alliance (NCDA) has prepared a survey to understand the community’s priorities when it comes to universal health coverage (UHC).

This is in advance of the first United Nations High-Level Meeting (HLM) on UHC, which will be held in New York on 23 September 2019.

Dementia was not even mentioned at the HLM in September 2018, so it is becoming imperative for people with dementia to have their say.

Please therefore consider completing the survey. People with dementia are as entitled to Universal Health Coverage as everyone else!

The results of this consultation will feed into broader advocacy efforts being conducted by UHC2030 and the civil society engagement mechanism, which are leading advocacy for the HLM on UHC. NCDA’s approach is to highlight specific areas in which the NCD community can bring added value to the discussion ahead of the HLM on UHC.

We hope by specifically inviting people with dementia to participate in this survey, the NCDA will ensure dementia is mentioned in its own right, and becomes a priority too.

Please complete this online survey by Friday 29 March. You may preview the survey, to facilitate consultation and help formulate their responses. The survey will take about 15 minutes to complete, once you have developed your responses.

Take the survey here: https://www.surveymonkey.com/r/6NCHMXV