Category Archives: Dementia

Newsflash: Environmental Design Special interest Group

Announcing the DAI Environment and Dementia Special Interest Group (ED-SiG)

As announced in our e-Newsletter earlier this week, the DAI Board of Directors has just endorsed a new group, the Environment and Dementia Special Interest Group (ED-SiG), an initiative set up by new board member, Emily Tan Tan Ong from Singapore.
It is an important initiative that DAI believes will increase opportunities for global collaboration and cooperation on a critical issue effecting people with dementia and our families.
The aim of this group is to create action following the award-winning ADI  2020 World Alzheimer’s Report, and the subsequent Design Manifesto which was initiated by the lead authors of the WAR Report, Professor Richard Fleming, Kirsty Bennett and John Zeisel.

Ps. Don’t forget  to sign up for our next Webinar,  From Rhetoric to Reality: Designing well for people living with dementia being presented by the authors and ADI’s Acting CEO, Chris Lynch. 

Purpose and role of the ED-SiG: The broad purpose of this group is to provide expert advice on and input into working towards the importance of, and more importantly, moving from the rhetoric of dementia-enabling design to the implementation of environmental design. This group proposes it is with a particular focus on dementia-enabling design in the community. Environment is more than just the built environment; it includes all the surrounding things that have a direct impact on our lives.

We believe there is a need to look into all aspects of environment including:

  1. Natural environment – how can we incorporate the natural surroundings to provide the peace and tranquility to the quality of life of those living with dementia who need the calmness from the nature as a healing therapy
  2. Built environment – how can buildings and infrastructures be designed in a manner that is accessible and usable by everyone including people with disability
  3. Rehabilitative environment – how can the environment minimise impairments impact, activity limitation and participation restrictions
  4. Communal living environment – how an environment can be intentionally created to reflect the shared values of a community
  5. Sustainable environment – how an environment is designed to promote and support a more sustainable lifestyle like Grow Your Foods, the 3Rs, No Food Wastage

Aims of the EDG-SiG:  The group is an initiative of DAI member Emily Tan Tan Ong, and was formally established in 2021, and approved by the board of Dementia Alliance International.

After years of costly and time consuming reports, multiple costly research projects, and many community initiatives such as the Dementia Friendly Communities, that none of these or other initiatives appear to have made little if any impact on improving inclusion and  access, or quality of life, the time is now for action.

This group is therefore committed to advocate for action; to move away from rhetoric, to tangible change that really makes a difference.

Members currently include:

  1. Mrs Emily Ong, Singapore (Lead)
  2. Ms Kate Swaffer, Australia
  3. Emeritus Professor Richard Fleming, Australia
  4. Professor Habib Chaudhury, Canada
  5. Mrs Christine Thelker, Canada
  6. Dr Tetsuro Ishihara, Japan
  7. Associate Professor Carol Ma, Singapore
  8. Associate Professor Shamira Perera, Singapore
  9. Professor Satoko Hotta, Japan
  10. Professor Satochi Ishii, Japan
  11. Tomofuni Tanno, Japan
  12. Dr Jan Golembiewski, Australia

If you would like to join this initiative, please contact us at [email protected] with a brief introduction about yourself, and your reasons for wanting to join.

Volunteer Vacancies

Photo by Julia M Cameron from Pexels

Dementia Alliance International (DAI) is a registered 501c3 charity in the state of Texas in the United States of America. Is is a charity that is run by, and for people with dementia, with no paid staff.

Volunteers currently support our important and demanding work.

DAI has three volunteer vacancies:

Dementia Alliance International (DAI) is a registered charity in the state of Texas in the United States of America; a charity that is run by, and for people with dementia with no paid staff. We do however, have volunteers who support our important and demanding work, and also thank our past, current and future Volunteers! We are currently looking for three new volunteers to support this innovative and highly successful advocacy organization.

Three Volunteer Vacancies:

  1. Board Secretariat: needs a demonstrated ability to keep accurate records, attend board meetings and the AGM, provide minutes, and other duties including advice on Governance.
  2. Finance Officer: needs a demonstrated ability to manage financial resources and develop budgets, prepare reports using Quickbooks, and so on.
  3. Webinars, Marketing and Social Media: this includes setting up webinars using Eventbrite, managing a calendar of keynote speakers, using MailChimp to communicate with members and supporters, and adding content to Twitter, LinkedIn and Facebook.

Key attributes:

  • Willing to work under the direction of the organisation, i.e. working under the instruction of people diagnosed with dementia, in accordance with nothing about us, without us
  • Agree to use DAI marketing and branding formats in all matters, including communications such as powerpoint presentations
  • Be willing to treat the role with the same professionalism as a paid position
  • Provide adequate notice if you need to step down
  • A background in or a full understanding of co-design
  • Knowledge and awareness of dementia as a disability, and equal access to the CRPD
  • Proven ability to work as a member of a team
  • Some education in dementia, or a background in dementia care

Essential criteria includes;

  • Confidentially
  • Willing to work under the direction of people with dementia
  • Willing to sign a Conflict of Interest form


 

 

Virtual Civil Society Forum at CoSP14

The Civil Society Coordination Mechanism, facilitated by the International Disability Alliance (IDA) hosted a Civil Society Forum on 14 June 2021

This forum precedes the COSP, which starts in about 12 hours.

We quote here from one of the the opening speeches, in particular from the Chair of the International Disability Alliance, Ms Anna Lucia. In her keynote address, she said:

“There is no such thing as a good institution.”

Another important point made by one of the other speakers, as without access, there is no inclusion:

“Access is crucial for equal inclusion and participation”

You can access the draft agenda for CoSP 14, and below is the list of side events with IDA Participation during COSP14, from Monday 14 to Friday 18 June 2021.

Watch LIVE the COSP14 from 15 to 17 June

Theme and sub-themes

Overarching theme: Building back better: COVID-19 response and recovery; Meeting the needs, Realizing the rights, and Addressing the socio-economic impacts on persons with disabilities

Sub-theme 1: Protecting the rights of persons with disabilities in armed conflict and humanitarian emergencies
Sub-theme 2: Living Independently, being included in the community
Sub-theme 3: Right to education; challenges with inclusive education and accessibility during COVID-19

Side Events with IDA Participation

Monday, June 14th

Time: 8:30 am – 9:45 am
Title: Protecting the Rights of Persons with Disabilities during Pandemics and Crises”
Organised by: League of Arab States, Arab Organisation of Persons with Disabilities
Link to join here
Link to concept note

Time: 3.00 PM – 4.15 PM EDT
Title:
Digital Accessibility: Strategies Towards Ensuring the Inclusion of Persons with Disabilities in Post-Pandemic Building Better Efforts
Organized by: G3ICT
Link to Register
Link to Concept Note

Tuesday, June 15th

Time: 8.30 AM – 9.45 AM EDT
Title:
Wethe15 Campaign
Organized by: International Paralympic Committee
Link to Register
Link to Concept Note

Time: 8.30 AM – 9.45 AM EDT
Title:
Barriers, Enablers, and Solutions for Disability inclusive education during the COVID-19 Pandemic
Organized by: UNESCO
Link to Register
Link to Concept Note

Time: 8.30 AM – 9.45 AM EDT
Title: COVID-19 Response in Humanitarian Settings – How are Persons with Disabilities Included?
Organized by: UNHCR
Link to Register
Link to Concept Note

Time: 8.30 AM – 9.45 AM EDT
Title:
Transforming our Communities: from Segregation to Inclusion
Organized by: Inclusion International
Link to Register
Link to Concept Note

Time: 8:30 AM – 9:45AM  EDT
Title: Bridging COVID-19 Response and Recovery: Learning from the Inclusive Futures Programme
Organized by: Inclusive Futures, Sightsavers
Link to Register

Time: 10.00 AM – 11.15 AM EDT
Title:
The Situation of Indigenous Women and Girls with Disabilities in the Recovery Efforts from the Pandemic of COVID-19
Organized by: RIADIS
Link to Register
Link to Concept Note
Link to Flyer

Time: 1.15 PM – 2.30 PM EDT
Title:
Access to Justice: For an Inclusive and Quality Police Service for Persons with Disabilities
Organized by: Special Envoy UNSG on Disability and Accessibility
Link to Register
Link to Program
Link to Invitation

Time: 6.00 PM -7:15 PM EDT
Title:
Leave No One Behind in Education: Rights to Education of Persons with Disabilities during the COVID 19 Pandemic
Organized by: DPI Korea
Link to Concept Note

Wednesday, June 16th

Time: 8.30 AM – 9.45 AM EDT
Title: Disability-Inclusive Climate Action: Why and How?
Organized by: IDA
Link to Register
Link to Concept Note

Time: 8.30 AM – 9.45 AM EDT
Title: One Pandemic, Different Realities: Evidence on the Experience of the Diversity of Persons with Disabilities and their Representative Organisations in Dealing with the COVID-19 Pandemic and Preparing to Build Back Inclusively
Organized by: IDDC
Link to Register
Link to Concept Note

Time: 8.30 AM – 9.45 AM EDT
Title:
Enabling Social Support Systems: Preparing Grassroots Communities for Inclusion of Persons with Psychosocial Disabilities
Organized by: TCI
Link to Connect
Link to Concept Note
Link to Program
Link to Flyer

Time: 8.30 AM – 9.45 AM EDT
Title:
Towards Meaningful Inclusion: Participation of Youth with Disabilities from Commitment to Call to Action and Compliance
Organized by: Office of the Secretary General’s Envoy on Youth in Partnership with WHO
Link to Register
Link to Concept Note
Link to Flyer

Time: 8:30 AM – 9:45 EDT
Title:
Representation Matters! Deaf Members in the UN Committee on the Rights of Persons with Disabilities
Organized by: Permanent Mission of Austria (to the United Nations of New York), WFD, Light for the World
Link to Register
Link to Flyer

Time: 10.00 AM – 11.15 AM EDT
Title: Global Disability Summit 2022: Where are We Going?
Organized by: the Co-Chairs of the Global Action on Disability (GLAD) Network
Link to Register
Link to the event

Time: 10.00 AM – 11.15 AM EDT
Title:
Show-casing Success of Commonwealth Disabled People’s Forum Online Disability Equality Training
Organized by: Commonwealth Disabled People’s Forum (CDPF)
Link to Connect
Link to Concept Note

Time: 10.00 AM – 11.15 AM EDT
Title:
Taking a Step Back Before Moving Forward: What Have We Learned to Support Inclusive Recovery?
Organized by: UNPRPD
Link to Register
Link to Concept Note

Time: 1.15 PM -2.30 PM EDT
Title: Impact of Armed Conflict and Coronavirus Disease (COVID-19) on Persons with Disabilities – Prioritizing Mental Illness or PTSD in the Socio-Economic Recovery Strategies
Organized by: CADUS
Link to Register
Link to Concept Note

Thursday, June 17th

Time: 8.30 AM – 9.45 AM EDT
Title: The Most Active Advocates, the Last to be Included: Women with Disabilities Affected by Armed Conflict
Organized by: Permanent Mission of Ireland to the UN
Link to Concept note

Time: 8.30 AM – 9.45 AM EDT
Title: WE DON’T WANT TO REMAIN STUCK AT HOME: Towards Inclusive and Responsive Social Protection Systems
Organized by: UNPRPD, ILO, UNICEF, IDA, FCDO
Link to Register
Link to Concept Note

Time: 8.30 AM – 9.45 AM EDT
Title:
Promoting the Inclusion of Persons with Disabilities in Just Transition Towards a Sustainable Economy
Organized by: ILO
Link to Concept Note

Time: 9.45 AM – 10:45 AM EDT
Title:
Inclusive Recovery from COVID19 Pandemic – Ensuring Organizations of Persons with Intellectual Disabilities and their Families are Consulted and Involved with Development Organizations and Governments in Building Back Better
Organized by: Inclusion International
Link to Concept Note

Time: 10.00 AM – 11.15 AM EDT
Title:
Freedom to Live: Malta’s Path to 2030
Organized by: Malta

Time: 10.00 AM – 11.15 AM EDT
Title: Implementing Art. 11 of the CRPD in Armed Conflict: Making Persons with Disabilities More Visible
Organized by: ICRC
Link to Connect
Link to Concept Note

Time: 11.30 AM – 12.45 AM EDT
Title:
Youth with Disabilities: Opportunities in COVID-19 Recovery and Onwards to the Youth with Disabilities Summit
Organized by: ULAC
Link to Register
Link to Concept Note

Time: 1.15 PM -2.30 PM EDT
Title:
Gender-Responsive Disability Inclusion in Conflict and Post-Conflict Contexts
Organized by: United Nations Entity for Gender Equality and Women’s Empowerment (UN Women)
Link to Concept Note

Friday, June 18th

Time: 8.30 AM – 9.45 AM EDT
Title
: Disability Inclusion in the Health Sector
Organized by: WHO
Link to Concept Note

Time: 10.00 AM – 11.15 AM EDT
Title:
Nothing About Us, Without Us: Amplifying the Priorities of Women and Girls with Disabilities to the CRPD and CEDAW Committees in the Post-COVID Recovery Process
Organized by: ADF
Link to Register
Link to Concept Note

Time: 10.00 AM – 11.15 AM EDT
Title: How COVID-19 – Affected SPED Teachers & How the Use of Technology Saved Students with Special Needs
Organized by: Athena Fund
Link to Register
Link to Invitation

New landmark resolution on disability adopted at the 74th World Health Assembly

Opening of the 70th World Health Assembly, a very different look to #WHA74 due to COVID-19.

On May 27, 2021, under the heading of Departmental news, the World Health  Organisation (WHO) reported on a new landmark resolution on disability adopted at the 74th World Health Assembly #WHA74. This is very significant to people with dementia globally because “dementia is a major cause of disability and dependence worldwide” (WHO)

News release:

A new landmark Resolution EB148.R6 “The highest attainable standard of health for persons with disabilities” was adopted by the 74th World Health Assembly. The resolution aims to make the health sector more inclusive by tackling the significant barriers many persons with disabilities face when they try to access health services.

These include:

  • Access to effective health services: persons with disabilities often experience barriers including physical barriers that prevent access to health facilities; informational barriers that prevent access to health information; and attitudinal barriers leading to discrimination which severely affects the rights of persons with disabilities.
  • Protection during health emergencies: persons with disabilities are disproportionately affected by public health emergencies such as the COVID-19 pandemic because they have not been considered in national health emergency preparedness and response plans.
  • Access to public health interventions across different sectors: public health interventions do not reach persons with disabilities because the information has not been provided in an accessible way and the specific needs and situation of persons with disabilities have not been reflected in the interventions.

The Resolution also aims to improve collection and disaggregation of reliable data on disability to inform health policies and programmes.

The resolution lists a range of actions to be taken by the WHO Secretariat including developing a report on the highest attainable standard of health for persons with disabilities by the end of 2022; implementing the United Nations disability inclusion strategy across all levels of the organization; supporting the creation of a global research agenda on health and disability; and providing Member States with technical knowledge and capacity-building support necessary to incorporate a disability- inclusive approach in the health sector.

International Womens Day 2021

On March 8 each year DAI joins the world in celebrating and recognising women. The theme in 2021 is #ChooseToChallenge. A challenged world is an alert world. Individually, we’re all responsible for our own thoughts and actions – all day, every day.

We can all choose to challenge and call out gender bias and inequality. We can all choose to seek out and celebrate women’s achievements. Collectively, we can all help create an inclusive world.

From challenge comes change, so let’s all choose to challenge.

In reality, all women and men make a difference, but historically, and even today, women often do not receive public recognition or praise for their work.

DAI represents the more than 50 million people currently living with dementia, and I am one of them, and those with a new diagnosis of dementia every 3 seconds, and whilst dementia is a chronic, progressive terminal condition, it is listed by the WHO as the fifth highest cause of death for women worldwide and is a major cause of death and disability in older persons.

Women make up 2/3 of dementia care supporters and more than 70% in lower and middle-income countries. Unpaid women carers compared to male carers, are also more often unemployed due to their unpaid role; girls who are carers also miss out on education.

Everyone impacted by dementia receives little if any health care, including a lack of access to a diagnosis, nor appropriate support to live with dementia once diagnosed.

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 (carer or diagnosed with dementia).

The stigma surrounding dementia exists universally, with women more likely to be stigmatised in this way.  Extreme forms of discrimination can lead to women with the condition facing abuse, violence and even death.

Governments, international civil society and partners around the world must get behind this global challenge and unite for a world where no woman is left behind because of her dementia, and you can join with us on March 8, 2021 by donating to support our work.

Gendered barriers to mobility and accessing justice lead to isolation and exclusion.

Understanding intersecting forms of gender- and disability-based violence, exploitation and abuse against women with disabilities including forced medical and psychiatric interventions.

Women with disabilities experience this type of abuse at disproportionately higher rates than others, and in unique forms owing to ingrained discrimination and stigmatization.

It is estimated that women with disabilities are 1.5 to 10 times more likely to be physically or sexually abused by a family member or caregiver than other women.

Women with disabilities are often excluded from national laws and policies and remain marginal to global discussions and agreements relevant to their empowerment. The global women’s agenda seldom takes into consideration the issues and concerns of women with disabilities.

In addition, women with disabilities are also neglected within the disability movement and the mainstream women’s movement. Stand-alone policies on women with disabilities remain limited; they are often excluded in policymaking and decision-making processes.

More often, women and girls also are the main informal family care partners for people livign with dementia, so not only do more women get diagnosed with any types of dementia they do the lions share of the informal care.

#ChooseToChallenge

About International Women’s Day

“International Women’s Day is a global day celebrating the social, economic, cultural and political achievements of women. The day also marks a call to action for accelerating gender parity. Significant activity is witnessed worldwide as groups come together to celebrate women’s achievements or rally for women’s equality.

Marked annually on March 8th, International Women’s Day (IWD) is one of the most important days of the year to:

  • celebrate women’s achievements
  • raise awareness about women’s equality
  • lobby for accelerated gender parity
  • fundraise for female-focused charities”

Please donate to Dementia Alliance International today, as the charity directly supporting women living with dementia and their families.  Thank you.

Review of Webinar – Living with Dementia by Bobby Redman

DAI “Meeting Of The Minds” Webinar – Living with Dementia: Supporting those who have it and care partnersby Laurie White.

Review by Bobby Redman, Vice Chair, Dementia Alliance International

Another successful Meeting of the Minds Webinar took place on the February 24th / 25th, with 147 registering to attend.  Although not everyone who registered, made it to the presentation by Laurie White from Dementia Care Consulting, there were 55 attendees, with a good mix of people living with dementia, care partners, health care professionals and researchers.

Laurie’s extensive experience, in working with people with dementia and their families became clear during her presentation: Living with Dementia – Supporting those who have it and care partners. Her perspective showed empathy and insight into the world of people living with dementia and their care partners.

Although we are all aware that peoples’ experience of dementia differs and not everyone thinks and acts in the same way, I could relate to many of the quotes and suggestions made by Laurie. Her focus on the “humanity of the person”, recognising that we all have our own stories and urging carers to put themselves in the shoes of those living with dementia, who may feel that they are still the same inside, was heart-warming.

For me, the recognition that dementia is not all about memory was particularly meaningful, as this is often missed by health professionals, who often fail to identify the real issues because they are constantly measuring for loss of memory.

I also enjoyed her perspective on how to communicate better with people living with dementia, reminding people to meet our personal needs in that area – a true person-centred approach.

Laurie clearly captivated the audience judging by the numerous questions following the presentation. Laurie generously responded to queries, both related to her presentation and the many other questions about unrelated areas, thrown her way.  Without a doubt there are still many, out there, seeking a better understanding of dementia and a practical presentation, such as this, hopefully, provided this, as well as some insightful ideas on providing supportive care.

For those who missed the presentation, Laurie has given us permission to share her PowerPoint.  This is available now, and a recording of the actual presentation, which covers a great deal more that will be available down the track, once edited.

Download Laurie’s slides here.

Donate to DAI today to ensure we can host more free webinars like this for you!

Introducing our new Chair, Alister Robertson

Alister Robertson, NZ

As we celebrate our 7th birthday this week, we are also delighted to introduce Dementia Alliance International (DAI) member Alister Robertson as our new Chair.

Alister has been a member since 2016, and has recently stepped down as our Vice Chair, to take on the role of Chair.

We are truly delighted to introduce Alister Robertson as our new Chair to  you. Alister has been a member of Dementia Alliance International (DAI) since 2016, and has recently stepped down as our Vice Chair, to take on the role of Chair.

Alister is taking over from Kate Swaffer who continues as a board member, and the CEO.

About Alister: Alister’s new leadership role has been endorsed and welcomed by the Board of Directors and by our members, and is recognition of the hard work Alister has done globally for our members, and in New Zealand where he is on the Board of Alzheimers New Zealand and a member of their Advisory Group.

He has a strong commitment to supporting people with dementia to have a voice, and to be included locally, nationally and globally.

Alister graduated from Lincoln University, Canterbury New Zealand in 1978 with Bachelor Agricultural Commerce. Spent the following 30+ years in the rural finance sector lending money to the primary sector.

In 2009 Alister and his wife, Charlene decided they would like to do something together, given their four sons had finished their schooling and were doing their own thing. Alister and Charlene resigned from their respective jobs, sold their newly built home and purchased a Motel in Taupo, which they sold four years later.

They then moved to Napier, Hawkes Bay (2013) to be closer to their son and his family. They had a retail and café business until Alister’s dementia diagnosis.

Alister’s father had Alzheimer’s and Alister was diagnosed with younger onset Alzheimer’s in 2014, aged 60 years. He endeavours to follow the advice of trying to maintain a healthy brain by way of diet, remaining socially involved, good sleep, staying mentally active and exercise. Alister is a keen cyclist, which is his main mode of transport and this helps keeping him fit.

Alister participates in the various activities provided by DAI and would like to see more Kiwi’s become active members of DAI, as well as more people with dementia globally to join for peer-to-peer support, and to get involved in the global work done by DAI.

Help people with dementia to continue to be included, to be supported and to have a voice, by donating today. 

Thank you.

You are invited to DAI’s 7th birthday Cafe

You are invited to the January 2021 virtual DAI Cafe Le Brain to help us celebrate 7 years of DAI’s advocacy and progress.

DAI Celebrates 7 Years

Hosts: Christine Thelker, Wally Cox and Kate Swaffer

Speakers include: Mr John Sandblom, Co founder and Treasurer, Dementia Alliance International, Mr Glenn Rees, Chair, Alzheimers Disease International and Ms Bethany Browne, Human Rights Advisor, International Disability Alliance.

Everyone is welcome.

DAI members will receive the zoom link to join by email.
All others will need to register here please.

DAY/DATE(S):

  • Tuesday, January 26, 2021 (USA/CA/UK/EU)
  • Wednesday, January 27, 2021 (AU/NZ/Asia)
  • Please note this is one event, set in a number of different time zones.

About the Cafe: Every month, DAI hosts a virtual café for its members and their families and supporters, and we have been doing so now for over 7 years!

Each January, we take this opportunity to celebrate our birthday together, and we invite you to join us. From small and humble dreams of global advocacy and human rights, and now, for dementia to be managed as a disability, alongside providing weekly peer to peer support and brain health sessions, we have achieved a lot!

This is your opportunity to hear from others who will share where we have been, acknowledging the work we have done, and dreaming together for our future. Our vision is for all people to be valued and equally included, including people with dementia and our care partners.

Everyone is welcome.

DAI members will receive the zoom link to join by email.
All others will need to register here please.

Programme:

  • Introductions and welcome by Kate Swaffer
  • Graeme Atkins performs, Happy 7th birthday DAI
  • Introducing our new Chair, Alister Robertson from New Zealand
  • Board update, Alister Robertson
  • DAI ‘(W)re-creational Officer, Graeme Atkins performs the DAI 7th birthday song, written by him
  • DAI’s global advocacy, and the value of our collaboration with ADI, by Glenn Rees
  • The importance of human rights and the CRPD for people with dementia, by Bethany Browne
  • An overview of the last 7 years (with images), hosted by Christine, Kate and Wally; you will hear from others including co founder Amy Shives and our long term volunteer Sarah Yeates

We will hear from a number of members and guests, inluding some of our co founders, volunteers and other special guests, including:

Mr John Sandblom, who is a co-founder of Dementia Alliance International (DAI), board member and the current Treasurer, and was instrumental in helping to set up DAI.

Mr Glenn Rees, who is the outgoing Chair of Alzheimer’s Disease International, and a former Chief Executive Office of Dementia Australia.

Ms Bethany Browne, who is the Human Rights Advisor to the International Disability Alliance, and formely worked for Human Rights Watch, including writing two reports on the excessive use of chemical restraint in nursing homes in the US and Australia.

Everyone is welcome.

DAI members will receive the zoom link to join by email.
All others will need to register here please.

DAY/DATE(S):

Tuesday, January 26, 2021 (USA/CA/UK/EU):

  • 1:00 pm Pacific
  • 2:00 pm Mountain
  • 3:00 pm Central
  • 4:00 pm Eastern
  • 9:00 pm London/Glasgow/Dublin UK
  • 10:00 pm Paris, Munich, Amsterdam, EU

Wednesday, January 26, 2021 ( AU/NZ/ASIA):

  • 5:00 am Perth, AU/Taipei/Singapore
  • 7:00 am Brisbane, AU
  • 7:30 am Adelaide, AU
  • 8:00 am Sydney/Melbourne/Canberra/Tasmania/Brisbane, AU
  • 10:00 am Auckland, NZ

The Webinar runs for up to 1.5 hours.

Check your time here if not listed above.

COST TO ATTEND:

  • FREE
  • YOUR DONATIONS ARE GREATLY APPRECIATED

PLEASE DONATE TO DAI OR BECOME AN ASSOCIATE OR PARTNER WITH US. WITHOUT YOU, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & OUR GLOBAL FAMILY.

Support people with dementia:

Everyone is welcome.

DAI members will receive the zoom link to join by email.
All others will need to register here please.

THANK YOU

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.