Category Archives: Dementia

13th session of the Conference of States Parties to the CRPD

The 13th session of the Convention of State Parties (CoSP) on the Convention on the Rights of Persons with Disbilities (CRPD) will take place this year on 30 November 2020 (in-person meetings: Opening and the election of the CRPD Committee members), 1 and 3 December 2020 (virtual meetings: roundtable discussions, the interactive dialogue with the UN system and the closing). This was originally scheduled to be held in New York in June, but was deferred due to the COVID-19 pandemic.

The 13th session of the Convention of State Parties (CoSP) on the Convention on the Rights of Persons with Disbilities (CRPD).

1. Overview
The 13th session of the Conference of States Parties (COSP) to the Convention on the Rights of Persons with Disabilities (CRPD) was scheduled to take place from Wednesday 10 to Friday 12 June 2020 at UN Headquarters in New York. Due to the COVID19 pandemic, the conference will now be postponed to the second week of December 2020. A Civil Society CRPD Forum will be held the day prior to complement the Conference. For more information on the 13th session, please click here.

2. Themes and sub-themes
Over-arching theme: A decade of action and delivery for inclusive sustainable development: implementing the CRPD and the 2030 Agenda for all persons with disabilities.

Subthemes for the three roundtables

  • Disability and business: realizing the right to work in open, inclusive and accessible environments for persons with disabilities.
  • Addressing the rights and needs of older persons with disabilities: ageing and demographic trends
  • Promoting Inclusive environments for the full implementation of the CRPD

Cross-cutting theme: Strengthening capacity- building to fully implement the CRPD and the SDGs for persons with disabilities, in particular women and girls with disabilities. (Addressing the Beijing+ 25th and other relevant commemorations of the historical benchmarks in the global agenda this year).

Although DAI is not hosting a Side Event this year, we are pleased to be a co sponsors of an important session, which has been organized by the International Network for the Prevention of Elder Abuse (INPEA) and Human Rights Watch.

Virtual Side Event during the 13th session of the Conference of States Parties to the CRPD.

Our rights under threat as we grow old:  A timely expert discussion on the intersection of disability and age 

Background 

The COVID-19 pandemic has exposed in tragic ways the combined effects of ageism and ableism on the rights of older persons with disabilities. Both groups – older persons with or without disabilities, and persons with disabilities regardless of their age – have been disproportionately impacted by the pandemic. Older persons with disabilities have been hit the hardest. 

Pre-existing barriers have both been magnified by the crisis and mirrored in the response. Older persons, persons with disabilities, especially those living in congregate settings, were identified early in the pandemic as persons at particular risk. Yet, the long-term care sector generally, and residential care in particular, have been largely overlooked in the preparedness and response measures. This resulted in the neglect, abuse, and high rates of death of older people in residential care as well as interruption of essential services for older people living at home. 

As a result of Covid-19 related lockdowns, older people with disabilities face restrictions to their freedom of movement as well as barriers to food, healthcare, employment, support in tasks of daily living, and emotional connection. These barriers are magnified for those living in areas of armed conflicts and humanitarian emergencies. 

Going forward, it is essential to use the lessons of the crisis to better protect the rights of older persons with disabilities. This includes addressing the chronic neglect of long-term support services and residential care while prioritizing person-centred, integrated, community approaches that put people and their dignity front and centre. 

A rights-based approach to ageing and disability also calls for addressing discrimination and empowering people to meaningfully participate in the decisions that affect them. 

Rationale 

The UN Independent Expert (IE) on the Enjoyment of all Human Rights by Older Persons, Ms. Claudia Mahler, dedicated her first thematic report to the impact of COVID-19 on older persons. Her findings and recommendations to States are particularly relevant to older persons with disabilities, including those living in residential care settings. 

The newly appointed Special Rapporteur (SR) on the Rights of Persons with Disabilities, Mr. Gerard Quinn has published recently on the lessons to be learned from the drafting of the UN disability treaty for a possible UN treaty on the rights of older persons as well as on autonomy and legal capacity for older persons. His current research interests include theories of personhood and new technology intersectionality between age and disability and extreme poverty and disability. 

The event 

This event will include a dynamic high-level moderated discussion between the two UN experts and an interactive discussion with the audience. Issues to be discussed include: 

  • Key gaps and challenges in the protection of the rights of older persons with disabilities as exposed and exacerbated by the COVID-19 pandemic 
  • Overlaps and distinctions in the protection of the rights of older persons and the rights of persons with disabilities 
  • Can the CRPD respond to the needs and rights of all older persons? 
  • Main lessons from the CRPD process for the UN Open-ended Group on Ageing on the protection of the human rights of older persons 

Speakers: 

  • Mr. Gerard Quinn, UN Special Rapporteur on the Rights of Persons with Disabilities 
  • Ms. Claudia Mahler, UN Independent Expert on the Enjoyment of all Human Rights by Older Persons 
  • Ms. Kate Swaffer, Chair, CEO & Co-founder, Dementia Alliance International (DAI) 

Moderator: Bethany Brown, Human Rights Advisor, International Disability Alliance (IDA) 

Interactive discussion to follow 

Organized by: International Network for the Prevention of Elder Abuse (INPEA) and Human Rights Watch, in partnership with the UN Office of the High Commissioner for Human Rights (OHCHR), and the UN Department of Economic and Social Affairs (DESA) Programme on Ageing. 

Cosponsors: AGE Platform Europe, AARP, Dementia Alliance International, The Global Alliance for the Rights of Older People, HelpAge International, International Disability Alliance, International Longevity Center Global Alliance, NGO Committee on Ageing Geneva, NGO Committee on Ageing NY, International Federation on Ageing, and the Association for Women’s Career Development in Hungary. 

CLICK HERE to REGISTER. 

Download the Side Event flier here
Download the Concept note here

If you have any questions please contact the convenor, INPEA at [email protected]

The Convention on the Rights of Persons with Disabilities (CRPD) was adopted by the General Assembly by its resolution 61/106 of 13 December 2006. It came into force on 3 May 2008 upon the 20th ratification. Article 40 of the Convention stipulates that “The States Parties shall meet regularly in a Conference of States Parties in order to consider any matter with regard to the implementation of the present Convention.” Since 2008, 12 sessions of the Conference of States Parties have been held at United Nations Headquarters, New York.

 

Human rights as a practice model in residential aged care, by Daniella Greenwood

DAI’s September Webinar on “Human rights as a practice model in residential aged care“, is presented by International dementia consultant Daniella Greenwood, who has a Bachelor of Arts (Hons 1), a Bachelor of Health Science (Leisure & Health/Therapeutic Recreation) and a Diploma of Diversional Therapy.

DAI is honoured to have had Daniella present on this very important topic to our audience.

About the webinar: Paternalism structures the lives of people living with dementia in residential/long-term care and diminishes their status as equal citizens. Person-centred and relationship-centred approaches have failed to address the deeply embedded philosophical and operational influence of the medical/institutional model and paternalistic assumptions. People living with dementia in these institutions continue to be treated as patients rather than as adult citizens, exposing them to regular, unchallenged and often casual breaches of their human rights justified as ‘best interests’ or as ‘interventions’ to manage what are commonly referred to as the Behavioural and Psychological Symptoms of Dementia.

The focus on ‘culture change’ has further obscured our urgent obligation to address the blatant and often state-sanctioned human rights breaches in residential/long-term care – which in any other care context would be regarded as profoundly unjust and, in many instances, illegal. A human rights lens is applied with practical examples outlining the possibility of creating an environment of recognition and true respect in long-term care through solidarity in aligning operations, attitudes, practices and processes with the United Nations Convention on the Rights of Persons with Disabilities.

About Daniella Greenwood: Daniella an international consultant, speaker and published author specialising in human rights policy and practice in long-term care. Her dissertation looked at human rights practice as it relates to citizen residents living in the later stages of dementia. She has presented her work to federal parliamentarians and as a keynote speaker including for Alzheimer’s Disease International in 2015 and Dementia Action Alliance in 2019. Daniella is also a musician who has composed and performed music to accompany some of Kate Swaffer’s poetry.

About DAI: Dementia Alliance International (DAI is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positively than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.

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

Join DAI here: www.joindai.org Read our newsletters or regular blogs, by subscribing here: www.dementiaallianceinternational.org

Since you’re here… we’re asking viewers like you to support our members, by donating to our organization. With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world, our work has never been more important. Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.

Donating or partnering with us will make a difference to the lives of people with dementia.

Thank you.

Newsflash: Professor Gerard Quinn is the new UN Special Rapporteur on the rights of persons with disabilities

Image: Professor Gerard Quinn is the new UN Special Rapporteur on the rights of persons with disabilities

The Dementia Alliance International wishes to congratulate Professor Gerard Quinn on his appointment as the new UN Special Rapporteur on the rights of persons with disabilities.

Mr. Quinn takes over the role from Ms. Catalina Devandas Aguilar who has worked tirelessly for persons with disabilities, and who has been appointed as Costa Rica’s ambassador to the UN in Geneva. Catalina has actively worked to ensure people with dementia are included in this work, for which we thank her.

Given Mr. Quinn’s extensive experience and expertise, we look forward to the implementation of this important mandate in the coming years.

It is a critical time for the rights of persons with disabilities, and we know Professor Quinn will carry out his role in a way that ensures inclusive, systematic and sustainable change to ensure the universal respect, protection, and fulfillment of the rights of person with disabilities, including peopel with dementia, while fully considering multiple and intersecting forms of discrimination.

The Dementia Alliance International looks forward to the Special Rapporteur’s contribution to the successful implementation of the United Nations Disability Inclusion Strategy as part of ongoing efforts to ensure that the United Nations system is fit for purpose in relation to disability inclusion.

Among his priorities, Mr. Quinn said that he will work to ensure that the voices of persons with disabilities are heard loud and clear, in global responses to general calamities caused by Covid-19, climate change and the armed conflicts. He highlighted the need for systemic change to underpin the gains of the UN CRPD, and to focus attention on the cultural and structural changes needed for the Sustainable Development Goals to be attained.

He will also continue to bring attention to the positive contribution of persons with disabilities, including highlighting the need to promote our active citizenship.

Mr. Quinn is a Professor Emeritus in law at the National University of Ireland, with a long career in public service. He sits on the scientific committee of the European Union Fundamental Rights Agency (EU FRA, Vienna), and has led the delegation of Rehabilitation International during the drafting of the UN CRPD.  To learn more about Mr. Quinn, follow this link.

Lyn Rogers shares why she is glad she joined DAI

Lyn Rogers is a member of DAI, and shares with us on Day 24 of Dementia Awareness Month, why she is glad she found DAI. Lyn has been a permanent resident in a nursing home (residential care facility) in the state of Victoria in Australia for over two years.

Lyn has a diagnosis of dementia and lives with other comorbidities, like most people over the age of 65. She moved to the facility from Queensland, therefore most of her family and friends are not living nearby, and although she uses a crutch, she loves to go for a daily walk, which is essential she maintain her mobility and emotional health. It has been much more lonely since the COVID-199 pandemic, as she has faced significant challenges being allowed to maintain her walking and other activities.

Thank you Lyn. We are really glad you found DAI.

https://youtu.be/pCYeS8NERbo

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people with dementia like Lyn to have a voice, by  supporting DAI.

 

Gait Retraining and Dementia, by A/Prof James McLoughlin

In July this year, DAI hosted a webinar Gait retraining and Dementia, by A/Prof James McLoughlin. It was very well attended, and we are pleased to share it during Dementia Awareness Month 2020.

James is an Associate Professor at Flinders University in Adelaide. He has a Bachelor of Applied Science (Physio), a MSc(Clinical Neuroscience), and a PhD, and is an experienced neurological physiotherapist and Director of Advanced Neuro Rehab in South Australia, a neurological and vestibular rehabilitation clinic.

James is passionate in promoting best practice for people with neurological & vestibular conditions. He has previously presented to us on Rehabilitation and Dementia.

About the Webinar: People with all forms of dementia can experience changes to their walking and balance. There are many factors that can contribute to these issues that can be targeted within an individualised rehabilitation program. James will discuss some of the proactive ways neurological physiotherapy can help with treatment, training and support.

Watch the webinar recording  here:

#DAM2020 #DAIisLifeChanging #WAM2020

Make sure you get involved in the DAI Art Auction this week.

Jerry Wylie and the Dementia Warriors #DAM2020

Today was our monthly Cafe Le Brain, and unfortunately for everyone, one of the co hosts’ internet died, so it was a rather disjointed cafe! We had a few topics on the agenda, including with Jerry Wylie’s permission, watching a video made about setting his local support group, called the Dementia Warriors.

Jerry Wylie, USA

Therefore to support those who missed out on the video at our Cafe, for Day 16 of Dementia Awareness Month #DAM2020 #WAM2020, we are not only adding that video here, we are highlighting Jerry’s journey from diagnosis to now, by posting two videos highlighting his incredible advocacy.

The first is a video recording of a presentation he gave at the ADI conference in Chicago in 2018. The second is a video that was made about setting up his local support group. It has been an incredible journey to partlt share with him; from diagnosis, to depression, to renewed purpose.

Thank you Jerry.

We are so glad DAI was the catalyst to help you see there is still a good life to live, in spite of dementia.

Jerry presents at the ADI Conference in Chicago

As a keynote speaker at the ADI Conference in Chicago in 2018, Jerry shared his deeply personal story, which included him sharing how he had been depressed and even suicidal after his diagnosis, and his passion became one of helping to stop other people’s lives being thrown in the bin after their diagnosis like his was!

People who become empowered to live positively and with renewed meaning and purpose is exactly one of the outcomes the original founders of DAI dreamed of. Life is short, so DAI works towards actively supporting people to get back to living their own lives, and also to have fun again.

Jerry Wylie, speaks on founding the Dementia Warriors.

Jerry often said that joining DAI saved his life, and attending a support group over zoom was the first time he had smiled or laughed since his diagnosis. He is now living the his life with true purpose ad passion, and we all applaud and congratulate him for having the tenacity to keep advocating, until this particular dream was achieved.

Well done Jerry, we hope other members may be inspired to follow you, and we are all very proud of what you have achieved, and how you continue to support families facing dementia.

Read the brochure about Jerry’s exciting Dementia Warriors support group.

Monday Science Podcast Dementia Series #DAM2020

Monday Science podcast’s Dementia Series starts today, Monday 7th September 2020. The series, and Monday Science has been curated by Dr. Bahijja Raimi-Abraham, whose biography is listed below.

All episodes in the month of September will be dedicated to conversations about dementia. The aim of the series is to raise awareness of dementia and experiences of it across the world.

Topics that will be covered in the series include the impact of COVID19 on persons living with dementia; the experiences of persons living with dementia; and the experiences of relatives of persons living with dementia.

Series Guests:

7th September: Kate Swaffer (Humanitarian & Chair/CEO/Co-founder of Dementia Alliance International)

The first podcast is now available here…

14th September: Ms Feyi Raimi-Abraham (Founder/CEO of The Black Dementia Company Ltd & care partner of a parent living with dementia)

21st September: Professor Adesola Ogunniyi (Clinician/Neurologist/Neuroepidemiologist and holding professional faculty position at the College of Medicine, University of Ibadan, Nigeria)

28th September: Mrs Cynthia Raimi (Retired Physiotherapist)

Monday Science is also funding-raising for Dementia Alliance International during the series. The aim is to raise £500.

  • ENDS 

Note to Editors:

Monday Science is a podcast that discusses the latest research in Science, Technology and is hosted by award winning scientist Dr Bahijja Raimi-Abraham. The podcast is available on Spotify, Anchor, Apple Podcasts, Google Podcasts, Stitcher, Castbox and on Monday Science website.

Dementia is a syndrome of a chronic or progressive nature where there is deterioration in cognitive function (i.e. the ability to process thought) beyond what might be expected from normal ageing. According to the World Health Organization (WHO), ~50 million people worldwide have dementia. Alzheimer’s disease is the most common form of dementia and may contribute to 60–70% of cases. Later-onset dementia affects people over 65 whilst younger-onset dementia affects people younger than 65.

About Bahijja Raimi-Abraham

Dr Bahijja Raimi-Abraham is a pharmacist, Lecturer in Pharmaceutics at King’s College London, Founder and Academic Lead of King’s College London Fight the Fakes. She leads her research group “The Raimi-Abraham Group”. Her research to date has been in pharmaceutical materials and innovative manufacture. More recently she has focused her research efforts within the therapeutic and drug development aspects of malaria.

Prior to her current position as Lecturer in Pharmaceutics at King’s College London, Dr. Raimi-Abraham held positions at University College London (UCL) as an Engineering and Physical Sciences Research Council (EPSRC) postdoctoral researcher position and at the European Medicines Agency (EMA) as a seconded Quality National Expert.

Dr. Raimi-Abraham is the first graduate of the University of East Anglia School of Pharmacy to be awarded a Ph.D. and more recently won the Outstanding Woman in STEM Precious Award.

In May 2020, Dr Raimi-Abraham started a new podcast called Monday Science. Monday Science is a weekly podcast which discusses the latest in Science, Health and Technology. Dr Raimi-Abraham started this podcast because of her passion for science communication and a desire to discuss topics both within her core research areas and expertise as well as outside of them. Monday Science also allows for the listeners to submit their questions which Dr Raimi-Abraham answers or finds experts in the field to answer them.

Dr Raimi-Abraham has curated a dementia series for Monday Science to be included as part of dementia awareness month motivated by dementia affecting a close family member. Through this series Dr Raimi-Abraham aims to amplify the voices of those affected by dementia whilst also raising awareness.

Further details including social media are available here.

 

Dawn and Maz: Why they’re glad they found DAI

On day 2 of Dementia Awarness month 2020 #DAM2020, we hear from DAI member Dawn and her partner Maz who live in Mebourne Australia, on why they are glad they found DAI. Dawn joins two of our peer-to-peer support groups each week, and occasionally, is inspired to get up early for avirtual Cafe or online Webinar!

Image source: Dawn and Maz

Dawn: I’m so glad I found DAI because I really enjoy the weekly support group sessions on Zoom.

I like that all the people in the Zoom sessions are pretty much like me and we talk about lots of things that we can still do. I like it when we share what we’re doing, such as what we’re cooking. It’s really good to hear other people’s experiences.

I appreciate that the others are very patient with me because I have Primary Progressive Aphasia and I find it difficult to express myself. Each week I write down what I want to say beforehand. Sometimes I read it and sometimes I just need it as a prompt.

I am so thankful that I was given Kate’s book ‘What the Hell Happened to my Brain?: Lvign Beyond Dementia’ because it introduced me to DAI (and it is an excellent, positive book!)

Maz: I’m so glad my partner, Dawn, found DAI because the weekly support group sessions on Zoom have been very affirming and encouraging for her.

They are a space just for her, not for both of us, and it’s great for her to have her own voice without me doing most of the talking, which is what often happens when we are in group settings, online or face to face.

Although I sit off-screen, I am present each week as a communication support for Dawn when needed.

It’s great to hear the positivity and encouragement bouncing off the participants. Just hearing from others who are going through similar experiences and emotions is so important. As with any other group of people, the participants’ sharing is not always positive, and the hosts always treat any expressions of sadness with sensitivity.

We’ve also learnt about many useful resources through the support sessions and the DAI website.

Dawn comes away from the sessions with a smile on her face and a sense of connection with others. Although we’ve never met any of the others in the group, we both feel that they are our friends and we are so grateful to the hosts who so generously give their time and expertise.

Thank you Dawn and Maz.

YOU can help DAI to support more members like Dawn here…

Webinar: Human Rights as a Practice Model in Residential Aged Care

We invite you to join us for our September 2020 “Meeting Of The Minds” Webinar,  Human Rights as a Practice Model in Residential Aged Care, presented by Daniella Greenwood.

  • Wednesday, September 23, 2020 (USA/CA/UK/EU)
  • Thursday, September 24, 2020 (AU/NZ/Asia)
  • Please note: this is one event, set in a number of different time zones.

Human Rights in residential aged care have never been so important!  At this time of the Coronavirus pandemic, when lockdowns and other restrictions have been enforced on families and residents, the many breaches of human rights these people already face have increased.  On top of that, the number of deaths in aged care due to this pandemic is truly tragic. Please do join us for this inspiring speaker, and an innovative and new way of supporting people living in residential aged care (nursing homes).

Register here…

Wednesday, September 23, 2020 (USA/CA/UK/EU):    

  • 2:00 pm  Pacific
  • 3:00 pm   Mountain
  • 4:00 pm   Central
  • 5:00 pm   Eastern
  • 10:00 pm  London/Glasgow/Dublin UK
  • 11:00 pm  Paris, Munich, Amsterdam, EU

Thursday, September 24, 2020 ( AU/NZ/ASIA):

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

The Webinar runs for up to 1.5 hours.

Check your time if not listed above with this link.
Donate to DAI or become an Associate or Strategic Partner.
Volunteer for DAI: [email protected]

Register here…

YOUR DONATIONS SUPPORT DAI IN MANY WAYS:

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 200.00 covers 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

PLEASE DONATE TO DAI OR BECOME AN ASSOCIATE OR PARTNER; WITHOUT YOUR SUPPORT, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

Support people with dementia:

THANK YOU

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You can view videos of previous DAI “A Meeting Of The Minds” Webinars on the on the DAI YouTube Channel

Please note: Whilst we usually publish the recording of the event on YouTube afterwards, it does not include the Q & A sessions, and occasionally, we do not publicly publish recordings of your online Webinars at all, so if you don’t register to attend, you may miss seeing our events.

GLAD Call TO Action: A Call To Rebuild a Future Inclusive of All

Dementia Alliance International signed on this week to the GLAD Network (the Global Action on Disability) Call To Action: A Call To Rebuild a Future Inclusive of All.

We are one of many organisations supporting this important Call to Action to all stakeholders to include persons with all types of disabilities in the response and recovery phases of the Covid-19.

The letter below confirms our endorsement of this important Call To Action, and includes links to the Call To Action and other information. Please also note, the Call to Action is still open for endorsement by all stakeholders and GLAD would welcome endorsement by additional partners using this form.

Dear Kate,

The co-chairs of the Global Action on Disability (GLAD) Network – the United Kingdom Department for International Development, the Norwegian Ministry of Foreign Affairs, and the International Disability Alliance – would like to extend our sincere gratitude for endorsing the Call to Rebuild a Future Inclusive of All. The Call to Action demands the inclusion of persons with disabilities in the response and recovery phases of the COVID-19.

Please be informed that your organization’s logo has been included  in the official Call to Action document, which can be accessed here.

The Call to Action is still open for endorsement by all stakeholders and we would welcome endorsement by additional partners. To invite your partners, please feel free to share with them this page where more information on the Call to Action and its endorsement can be found.

If you have any questions, please do not hesitate to contact us.

Thank you very much.

Sincerely,

Penny Innes, Head, Disability Inclusion Team
United Kingdom Department for International Development

Jon Lomøy, Special Representative
Ministry of Foreign Affairs, Government of Norway

Vladimir Cuk, Executive Director
International Disability Alliance