Category Archives: CRPD

International Day of People with Disability 2021

The International Day of People with Disability #IDPwD is held on 3 December every year, and is a United Nations observance day aimed at increasing public awareness, understanding and acceptance of all people with any type of disability.

Each year the UN announces a theme to observe for International Day of People with Disability, which provides an overarching focus on how society can strive for inclusivity through the removal of physical, technological and attitudinal barriers for people with disability. This has been occurring since 1992 when the General Assembly announced 3 December as the International Day of Disabled Persons.

The annual observance of the International Day of Persons with Disabilities was proclaimed in 1992 by the United Nations General Assembly. It aims to promote the rights, quality of life and well-being of persons with disabilities and to increase awareness of their situation in every aspect of political, social, economic, and cultural life. This year, our past Chair and CEO, and co-founder of DAI, Kate Swaffer writes about why she believes it is critical to manage and supporting dementia as a disability. Thank you Kate.

The Dementia Alliance International (DAI) membership joins the rest of the world on Friday 3rd December 2021 to observe the International Day of Persons with Disabilities. The theme this year is Leadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-COVID-19 world’.

Dementia is a condition causing disabilities.

During this years celebration of people with disabilities, the 2021 theme is ‘Fighting for rights in the post-COVID era.”, and  we are observing the challenges, barriers and opportunities for people who live with disabilities, in the context of a global pandemic.

My hope for this UN Observance Day is that dementia is a condition causing disabilities will be embedded into policy and practice everywhere. We must fight for this right, and interestingly, the covid pandemic has not only highlighted our experience of islation, discrimination and stigma, it has also highlighted how many of our rights are being denied.

Not to treat dementia as a condition causing acquired cognitive and other disabilities, is a major barrier to improving quality of life and reducing stigma and isolaton. To do so, is also an excellent opportunity to create real change.

As I continue to advocate about my continuing concerns of the lack of dementia being well recognised as a condition causing disability in academia, in policy and in service provision, I have to work har don retaining HOPE, which  members tell us joining DAI also gives them.

This is especially so, when for example, a research project is specifically concerning post diagnostic care, support and services, or quality of life for people living with dementia.

Since my own diagnosis of a younger onset dementia 13 years ago, I am becoming increasingly distessed by the lack of recognition of dementia as a disability and lack of proactive support for the more than 55 million people with dementia to live with more hope, and to live more independently for longer. 

People newly diagnosed with dementia already have their hope taken away at the time of diagnosis, so to have it taken away again (repeatedly) due to others refusing to accept that dementia is a condition causing cognitive and other disabilities, is systematically denying us proactive disability support at the time of diagnosis and takes away more hope of living positively with a diagnosis of any type or cause of dementia.

Having been advised by every professional working in dementia (except my neurologist) to ‘go home, get my end of life affairs in order, give up work and give up study…’ and even ‘to get acquainted with aged care so I would get used to it’, it is curious to personally know so many people with dementia all around the globe who have lived many years, some even decades, beyond the projected life span they were given at the time of their own diagnoses, and many of these people say it is mostly due to managing dementia as a disability. 

Thankfully my university taught me to see the symptoms of dementia as disabilities and provided me with disability assessment and then very proactive disability support to keep living my own life, not too long after diagnosis. Of course, I did not especially like accepting another seemingly negative D-word. Accepting I had a diagnosis of dementia, and the stigma and discrimination due to the label of dementia was bad enough but accepting dementia as a disability initially added to my misery. 

However, this is a critical step that was hugely important in my ability to live more positively – and importantly, more independently – with younger onset dementia. 

  • Dementia is listed as a major cause of disabilityand dependence on the WHO website 
  • In 2010, the World Health Organisation launched the updated version of the WHO DisabilityAssessment Schedule (WHODAS 2.0), the internal classification of functioning, disability and health, and at the same time stated on their website under Dementia Facts, that dementia is a condition which is the leading cause of disability and dependence. (It now says a major cause)
  • People with Younger Onset Dementia (YOD) in Australia now receive services via the NDIS (a government funded disabilityservice)
  • Many universities globally now see and support people with dementia as people with acquired disabilities, following the lead of the University of South Australia, who to my knowledge, were the first to do this for a person with dementia after my diagnosis
  • It is recognised by the CRPD Committee and the Special Rapporteur on the Rights of Persons with Disabilities as a condition causing disabilities
  • The International Disability Alliance accepted DAI as an Observer member in 2016, as they also now recognise dementia as a condition causing acquired cognitive (and other) disabilities
  • The WHO re-categorised it in 2017, as a condition causing cognitive disabilities (it had been listed under psychosocial disabilities before then).

If we ignored something as important as this in any other health space, everyone would be advocating for change. 

Whilst it may be unpleasant accepting a second D-word – that dementia causes disabilities is a reality and being advised this soon after a diagnosis potentially allows many more people to be distressed about their diagnosis for a shorter period, and to become more proactive about their diagnosis by actively seek disability support. 

Everyone has the right to knowledge, and to appropriate care and support.

Everyone has the right to be told that dementia causes disabilities. 

Following stroke, people are advised of their ‘residual (and other) disabilities’ and almost immediately offered rehabilitation and other support to live with them. That is not easy to accept either, but it is necessary to ensure the best outcomes and highest quality of life for someone after a stroke. 

If a university can provide disability assessment and disability support for a person diagnosed with dementia to continue living – why then, is it so hard to by everyone else? I believe it is critical if we are ever to improve post diagnostic experiences for people more newly diagnosed with dementia.

Not to tell people when first diagnosed with any type of dementia, that the symptoms are progressive disabilities, goes against their most basic humna right to knowledge about their condition.

Not to,  also denies them disability assessment and support soon after diagnosis and an awareness tht for many, it may be possible to maintain independence and a higher quality of life for much longer.

It is akin to not telling a person newly diagnosed with cancer there are treatments that may – or may not – work. 

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Nothing about us without us

We are pleased to share this reflection on the important messages we have heard during the 2021 World Alzheimer’s Month / Dementia Awareness Month, written by DAI board member, Julie Hayden from the UK.
Thank you Julie.
As we reflect on Dementia Awareness Month 2021, lets not forget the important messages we have received from each nation and the numerous organisations which have taken part.
Those messages include:
  • Dementia can affect anyone from any age bracket, cultural background or social standing. Few people living with dementia today ever thought it would come to them. Please consider how you would wish to be treated.
  • To be Dementia Friendly is fine, but being Dementia Inclusive is better. Involving us in all aspects of life, so affording us the same Rights that are enjoyed by others.
  • Showing love, respect and consideration whatever our level of dementia and however challenging our symptoms may be to you. We remain whole persons. We do not fade away or disappear, we just often become harder to reach, but it’s always worth the effort of doing so.
  • At the centre of all plans for us and discussions about us, please remember it is vital that we are part of that dialogue.
Let’s continue to work together.
So much more can be achieved if we develop a team approach.
No one organisation can do it alone and no piece of work has value unless it stems from the lived experience of people who themselves are diagnosed wth dementia.

A More Inclusive Public Transport System by Emily Ong

 

 

In 2021 we observe World Alzheimer’s Month #WAM also now referred to by many people and organisations as Dementia Awareness Month #DAM and World Dementia Month, by highlighting stories about, or written by our members, who all live with a diagnosis of dementia.

Today, we hear from board member Emily Ong from Singapore has written her second article of her personal experience of public transport in Singapore, which can easily be applied to public transport accessibility for people with dementia globally.  Her first article was about accessibility.

Thank you Emily, for your continued advocacy for all people living with dementia.

A More Inclusive Public Transport System in Singapore

By DAI board member and dementia advocate Mrs. Emily Ong

Image source: Emily Ong

Since the introduction of the Enabling Masterplan (2012-2016) in 2014 and ratification of the UN CRPD in 2013, the Singapore government has put in measures to improve the environmental accessibility and progressive removal of barriers to ensure full and effective participation of people living with disabilities in their social life and development, and one of which is the public transport system.

In 2019, Singapore was awarded The Asia-Pacific Special Recognition Award by the International Association of Public Transport (UITP), an international transit advocacy organization for its efforts in making the public transport system more inclusive.

The two efforts were;

  1. Heart Zones are designated areas for the elderly and visually disabled commuters at MRT stations and bus interchanges, and
  2. [email protected] which provides wheelchairs for the elderly commuters and those with physical difficulties.

Hence, I have been looking forward to the opening of new MRT stations along the Thomson-East Coast Line because it is a direct line from my place to my mum’s place in Woodlands. This would mean that I no longer need to change the MRT line which at times can be a cause of confusion for me because from Bishan to Woodlands is a different floor from Bishan to Marina Bay. We decided to take from Upper Thomas MRT station to Springleaf MRT station to have our breakfast on a Saturday morning.

Unfortunately, the second level of the escalator to the gantry area has this flashing light reflection on the escalator steps that are rushing towards you. It is like everything is moving but in opposite directions, making it hard to judge the steps and creating a very discomforting visual experience for me.

This can be potentially dangerous for people with photosensitive epilepsy as it might trigger a seizure if the escalator is moving fast during normal busy hours. It was the first thing that I informed the officer when I saw SMRT people inside the train. I am happy that my concern is heard and taken seriously.

 

This can be potentially dangerous for people with photosensitive epilepsy as it might trigger a seizure if the escalator is moving fast during normal busy hours. It was the first thing that I informed the officer when I saw SMRT people inside the train. I am happy that my concern is heard and taken seriously.

I am very pleased with the overall experience. The wayfinding signages are prominent positioned and big enough to read from a distance. Color contrast is heavily emphasized throughout from signages to platform seats.

 

And with the recent initiative – “May I have a seat please” lanyard & card, in April this year, which aim is to make rides more comfortable for those with invisible medical conditions such as have issues in maintaining their balance where there is jerking along the ride or with chronic pain arthritis are much applauded.

Singapore has come a long way in becoming more inclusive in the public transport system. As a consumer of public transport services and a dementia advocate, I would say, the application of the Universal Design concepts and principles has produced solutions that are functional, usable, and intuitive.

Another big contributing factor is the effort put in to collect feedback from commuters and the public engagement exercise where the public can share their views on the Land Transport Master Plan for 2040 and beyond. I hope that other mainstreaming accessibility issues will too have more and more participatory spaces to enable people with disabilities either born or acquired, visible or invisible, to have their voice heard and influence decision-making.

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By donating, you will ensure we can continue our work supporting people diagnosed with dementia, our families and the broader dementa community of researchers and professionals.

How people with disabilities due to dementia are marginalised

We continue to share written or video stories, poems, and other stories of interst from our members, as part of o ur World Alzheimer’s Month – Dementia wareness Month activities. Today we are sharing a presentation made by DAI Board member Phyllis Fehr.

On June 8, Phyllis provided a statement for the United Nations Online Regional Consultations with people with disabilities and their representative organizations in the Caribbean and North America;

“From isolation, invisibility and segregation into inclusion of people with disabilities in the community. Identifying and overcoming barriers to the successful process of deinstitutionalization”

How people with disabilities isolated, marginalized, excluded, segregated or institutionalized in the Caribbean and in North America regions? How can these practices end?

Phyllis Fehr

As a woman living with Young Onset Dementia, I sat back with dread, fear and utter disbelief as I watched what was happening in the long-term care sector for people living with dementia.

These people were being further isolated and segregated. They were subject to disgraceful living conditions, in some instances. They were placed in their rooms with no interaction from others. Some received no assistance with activities of daily living or feeding. They were unable to have visitors or even accept video calls in the early stages of the COVID pandemic.

I watched as the early numbers grew and grew and, I watched as these people were not given a choice as to what was happening to them with regards to their care. I also watched in amazement at how decisions were being made about, and for, people living with dementia without any input from them or a family carer. This in itself scares me and makes me wonder what it’s going to be like when I need to go into care, after I  can no longer care for myself.

Some people with Alzheimer’s  disease [or other dementias] are unable to understand what’s happening or even communicate their needs or understandings. That is why I would like to see the care settings turned into small 4 to 6 bed residences, with a home-like environment, within a residential community – where the paid care staff are able to learn, have human rights training and have a better understanding of the person they’re caring for. That way they are seen as an individual not as a patient.

Moving from a medical model to a more social model of care, clients will get more personalized care in a more understanding setting. This type of setting will help to alleviate the spread of infections and diseases throughout, not like in large institutions.  It will help to minimize the devastation that happens to people in institutional settings. In these smaller group settings, people living with dementia will have more contact with care givers and will not feel the isolation they experienced in the larger setting, during the COVID epidemic.

The staff-to-patient ratio will be much better rather than eight-patients to one nurse. it could be three patients to a Personal Support Worker. This will greatly improve the actual hands-on-care, the understanding, and the standard of care that these patients will receive. We could have multiple homes in one neighbourhood, allowing for visits and get-togethers with other homes.

We know that people living with dementia do much better when they are kept engaged and are able to interact with others. In small group home settings, this is more achievable than in the larger settings. I firmly believe that this is the way to go in the future, so that we are able to remain in our community and have a sense of belonging.

We may have a cognitive impairment, but we are still able to understand and engage until late in the disease process. We all have human rights let’s abide by them.

Thank you for your time.

Phyllis Fehr, 2021

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World Alzheimers Month DAI Webinar Series

World Alzheimer’s Month 2021 #WAM2021,  also known in some countries as Dementia Awareness Month #DAM or Dementia Action Week #DAW is almost here!

Lets’s all work together to make a difference.
#Collaborate #Cooperate #WorkingTogether

This year DAI has planned a series of webinars specifically focused on rehabilitation for dementia. We have done this, as people with dementia have been campaigning for the full suite of rehabilitative interventions for decades, and at last, we appear to be seeing small actions towards actually achieving this.

Last year, Professor Lee-Fay Low and A/Professor Kate Laver edited a book on Rehabilitaiton for Dementia. This year, the World Health Organisation has been working on their own Rehabilitation for Dementia Guidelines, so there is hope it will eventually make it into mainstream clinical and care practice.

Rehabilitation and Dementia #DAI Webinar Series 2021

  1. Webinar 1: Rehabilitation to maintain physical function, presented by A/Prof Michele Callisaya and Dr Morag Taylor
  2. Webinar 2: Living life to the full: rehabilitation of daily activities and leisure for people with dementia, presented by Associate Professor Kate Laver and Doctor Claire O’Connor
  3. Webinar 3: Cognition-oriented treatments for people with dementia, presented by Dr Alex Bahar-Fuchs and Dr Loren Mowszowski
  4. Webinar 4 Panel Session: The Importance of Rehabilitation for all People with Dementia, with panellists includng Professor Lee-Fay Low, PhD, Emily Ong, Lynette Rogers and Kate Swaffer

Rehabilitation for all people with dementia is a basic human right, and in this series, DAI aims to highlight why.

REMINDER

Reminder to register for the two webinars this coming week too, both very important sessions exploring new ways of managing dementia.

  1. How to make Alzheimer’s a rare Disease!, by Professor Dale Bredesen, M.D.
  2. Updates In Precision Medicine and Protocols for MCI & Dementia, by Dr Nate Bergman DO, MBA

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.

Accessibility on Whose Terms

Accessibility on Whose Terms?

By DAI Board member, Emily Ong from Singapore.

“Museums disable me as a viewer. Everything, from the artworks to the explanatory texts, assumes a subject who uses their visual sense as a primary way of knowing, and I am a nonvisual learner who requires a different frame of reference.” – Carmen Papalia.

The quote resonates with me as someone living with dementia, a type of acquired disability. In most circumstances, my dementia condition does not limit my ability to participate fully in life. I am as capable as others without disabilities in carrying out my role as an advocate, advisor, and educator. However, I am often disabled from doing what I want or need to do because the mainstream environment can be disenabling and inaccessible for people like me.

In the past week, I have been working as an advisor with two local public transport providers in making the concourse area of two bus interchanges more enabling and accessible for people with disabilities, not limited to dementia per se. An accessible and enabling environment improves the quality of life for people living with disabilities, and it is a prerequisite for a truly inclusive society.

People with visual impairments like Carmen Papalia and those with Posterior Cortical Atrophy (PCA), a rare form of dementia, would find themselves in a disabling situation when the place they visit does not offer communication access options and prevents them from appreciating the exhibits in the museum. This is a type of ‘situational disability‘ that makes it difficult and almost impossible to participate on an equal basis with others and this leads to exclusion and marginalization.

The UN Convention on the Rights of Persons with Disabilities (CRPD) states clearly that persons with disabilities have the same rights as all other persons. To ensure persons with disabilities can claim their rights, services and facilities must be accessible and provided without discrimination.

© (2002). Michael F. Giangreco and Kevin Buelle. Farside cartoon. Reproduction and communication of this material is permitted under the Fair Dealing provision of the Canadian Copyright Act.

Very often the concept of ‘accessibility is narrowly defined when it comes to environmental design. There is a need to understand that an environment is made up of different domains and they are interconnected.

Take, for example, a person living with Primary Progressive Aphasia, would not be able to get much help at the Passenger Service Counter if there are no options of other modes of communication other than speaking. The person will not be able to benefit fully from the improvement of the physical accessibility of a place if the message cannot get across and be understood between the individual with speech impairment and the customer service personnel.

Good accessibility is built around the principle of an unbroken chain of movement, highlighted by the ‘RECU’ (Reach, Enter, Circulate, Use) concept:

  • Reach: Being able to get to the service you wish to use
  • Enter: Being able to enter buildings
  • Circulate: Being able to move about inside buildings
  • Use: Being able to use the services provided in the building

Let’s take the concourse area of a bus interchange, which usually has high traffic flow, high noise level, lots of information including advertisements, can easily cause cognitive and sensory overload for people like me. Practically every sound goes through my ears without much filtering and you can imagine the struggle I have when I seek assistance over the Passenger Service counter. I struggle to hear what was said to me because of the lack of sound-absorptive materials around the area. Hence, I avoid the Passenger Service at all costs and prefer, to ask for assistance from passing commuters if possible.

There are times when I become overly anxious due to disorientation, words are hard to be articulated as the muscles around the mouth tense up. In such a situation, I would prefer writing over verbal communication. A self-help kiosk that is easy to use and with a friendly interface would come in handy. Being able to access information is a huge part of maintaining independence for any individual.

However, the panel information board at the concourse area of a typical bus interchange is overloaded with information and font size that is too small to be handled by a brain that is cognitively impaired. It would be helpful if transport service providers can have bus route leaflets presented in clear and simple language instead of the ‘one-size fit all’ standard version.

Based on my experience as a commuter who heavily depends on bus and Mass Rapid Transit (MRT) services to get around doing my advocacy work independently, I would say:

  • Reaching the station is no issue because the pathway is well-linked and sufficient signposting to provide directional guidance.
  • Entering the station is no issue because there are built-in ramp and lift that I can take to overcome my visuospatial perception issues.
  • Circulating within the concourse area is usually a challenge for me if there is an absence of useful pictures or graphics to help me form a mental image of the place when I try to orientate and navigate around. Sometimes, the design and location of the facilities within the concourse area is non-intuitive and demands much effort to understand in order to find my way around.
  • Usage of the services and facilities for me is currently satisfactory with slight information inaccessibility. Alternative formats of route maps and guides such as audio maps, and big print maps would be useful and handy. Accessible Help Points buttons like the ones used in the London Underground are helpful in the event someone with a disability needs assistance from Passenger Service but far from the service counter or in the washroom area.

To sum up, accessibility involves removing the physical, communication, attitudinal, and institutional barriers faced by people living with all types of disabilities, including dementia.

However, to address the accessibility issues the presence and involvement of people living with disabilities in the accessibility project is indispensable and has to be on all levels: awareness-raising, dialogue, policy definition, advice, and assessment.

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


 

 

Further information to the DAI Written Statement for CoSP14

In this article, we provide more detailed information to add to the Written Statement submitted for the 2021 ECOSOC High-level Segment of the CoSP14, by Dementia Alliance International in consultative status with the Economic and Social Council.

Dementia Alliance International (DAI) is the global voice of people with dementiam and has been in existence since it launched on Jnauary 1, 2014. We were foudned by eitht peopel with dementia, from three countries. In our Written Statement, we also represented Alzheimer’s Disease International, the global voice for dementia, also one of our strategic partners.

The World Health Organisation, in its Global Action Plan for a Public Health Response to Dementia adopted in 2017 and has highlighted dementia as a condition causing disabilities and placed the human rights of people with dementia at the core, including implementation of rights through the Convention on the Rights of Persons with Disabilities (CRPD) with empowerment, inclusion and accountability as three of its seven cross-cutting principles.

These reflect the core elements of CRPD and all other Human Rights Treaties deriving from the UN Universal Declaration of Human Rights in 1948.   This approach to human rights and the CRPD reflects the standard being advocated for at a global level by Dementia Alliance International and Alzheimer’s Disease International.

The COVID-19 pandemic has highlighted past injustices for the more than 50 million people living with dementia, through increasing the spotlight on the isolation, stigma, discrimination, and lack of equal access to Universal Health Coverage and post diagnostic care or support.

Dementia is a major cause of disability and dependence globally, yet people with dementia are still advised to go home and prepare to die, rather than provided the appropriate disability assessment or support afforded all others with disabilities.

Many Articles of the CRPD highlight further how people with dementia are being left behind.

The pandemic has created a human and social crisis of unparalleled scale, and the outbreak and its multidimensional influences have disproportionally affected persons with disabilities, including people with dementia, and especially those with pre-existing health conditions, people from low socio-economic backgrounds, those in low and middle income countries and those living in institutional settings such as nursing homes.

Enforced segregation and institutionalization continues, and many other breaches of human rights have been under the spotlight as never before.

Non-disabled people don’t talk about their ‘right to live independently and to be included in the community’, because their rights are not being denied, and the CRPD is meant to be an instrument to ensure the rights of people with disabilities.

Living independently and being included in the community are essential to quality of life and well-being of all, including of persons with disabilities.

In spite of the CRPD, many persons with disabilities experience discrimination and many other barriers and challenges on a daily basis without being able to enjoy these rights and freedoms. These have not only been highlighted by, but they have been worsened by the COVID-19 pandemic.

Article 1 – Eligibility

Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers may hinder their full and active participation in society on an equal basis with others.

From a human rights perspective, the biggest barrier is the ‘Iron Curtain’ that separates dementia from disability. This has led to the assumption that we are not included in CRPD and are solely a Health responsibility, rather than the joint responsibility of all government departments for the well- being of all their citizens.

This has led to persons with dementia being excluded by Member States from their implantation of the Convention and to the absence of evidence of the use of CRPD General Principles and Articles in the regional and national |Dementia Strategies launched by Member States who have ratified it.

Article 19 – Living independently and being included in the community

Living independently and being included in the community are essential to the well-being of persons with disabilities and living at home and in the community is not only the preferred choice of people with dementia but also an economic imperative for governments compared to costly residential care solutions. Yet, many persons with disabilities experience discrimination and numerous barriers, facing challenges on a daily basis without being able to enjoy these rights and freedoms. These have been exacerbated by the COVID-19 crisis.

With the adoption of the CRPD in 2006, the right to independent living and being included in the community was given legal recognition in the international normative frameworks as an essential part of the individual’s autonomy and freedom. The CRPD advanced a human rights-based approach to the disability inclusion in many spheres of life. Article 19 of the Convention recognizes the right of all persons, with or without disabilities, to live independently and be included in the community, with the freedom to choose and control their own lives.

It seeks to minimize abandonment, institutionalization and segregation in domestic settings through protective mechanisms and enabling environments for all.

Persons with cognitive disabilities caused by any type of dementia, especially those who are more advanced in the disease and who have very complex communication or personal care requirements, are frequently categorized as needing to live in institutional settings for their own safety and are being segregated. Their autonomy is ignored, and such reasoning conflicts with article 19, which stipulates the right to live independently and be included in the community to all persons with disabilities, regardless of their level of cognitive capacity, self-functioning or support requirements.

States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

19a. Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.

19b. …access to in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.

Article 25 – Health

The COVID-19 pandemic has caused unprecedented bias towards, as well as mistreatment or denial of medical treatment against people with dementia and other disabilities, through the withholding of medical and hospital treatment, including vaccinations.

25d. Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent.

25e. Prohibit discrimination against persons with disabilities in the provision of health insurance and life insurance…

25f. Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

Article 26 – Habilitation and rehabilitation

  1. Enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, in such a way that these services and programmes:

26.b. Support participation and inclusion in the community and all aspects of society, are voluntary, and are available to persons with disabilities as close as possible to their own communities, including in rural areas.

The road to a diagnosis of dementia can be a long, stressful, beset by unrealistic expectations, fears based on myth, unfounded hopes and certain confusion.  We must change the approach of treating people with dementia as having lost capacity from the moment they are diagnosed; instead, it needs to be acknowledged that some people with dementia are now living 20 years and more beyond diagnosis and striving to live positively, not the life expectancy of 7 years as the current data reflects. We are not invisible; we are not children, and we will not be ignored or shunted aside.

It is our right – whether at home, on a bus, at a concert, a sports event, a restaurant, a doctor’s office to be treated with dignity and respect. We still count, we are loved, sometimes well-educated, verbose, funny, and above all human.

People with dementia are being left behind in the 2030 Sustainable Development Goals and the pandemic has significantly increased isolation and the violation of rights of persons with dementia.

They are also regularly excluded from many of the advocacy activities, or the global or national policy strategies wish as the development of National Dementia Action Plans to improve care and services for people with Non-Communicable Diseases (NCD’s) globally.

People with dementia need much more than inclusion, such as a seat at the table, or to be ‘given a voice’.

They need equal inclusion and full and equal access to the CRPD, like all others living with disabilities.

Information provided by Kate Swaffer, co-founder & CEO of Dementia Alliance International.

DAI Written Statement to the CoSP14

The 2021 Session of the Conference of State Parties Conference (CoSP) on the Convention on the Rights of Persons with Disabilities (CRPD).

13 June 2021 – 16 June 2021
Agenda item 5
ECOSOC High-level Segment

Statement submitted by Dementia Alliance International in consultative status with the Economic and Social Council.

We provide a Written Statement for the 2021 ECOSOC High-level Segment. Dementia Alliance International is the global voice of people with dementia. We also represent Alzheimer’s Disease International, the global voice for dementia.

The World Health Organisation, in its Global Action Plan for a Public Health Response to Dementia adopted in 2017 has highlighted dementia as a condition causing disabilities and placed the human rights of people with dementia at the core, including implementation of rights through the Convention on the Rights of Persons with Disabilities (CRPD) with empowerment, inclusion and accountability as three of its seven cross-cutting principles.

These reflect the core elements of CRPD and all other Human Rights Treaties deriving from the UN Universal Declaration of Human Rights in 1948.   This approach to human rights and the CRPD reflects the standard being advocated for at a global level by Dementia Alliance International and Alzheimer’s Disease International.

The COVID-19 pandemic has highlighted past injustices for the more than 50 million people living with dementia, through increasing the spotlight on the existing isolation, stigma, discrimination, and lack of equal access to Universal Health Coverage and post diagnostic care or support.

Dementia is a major cause of disability and dependence globally, yet people with dementia are advised to go home and prepare to die, rather than provided with disability assessment or support.

The pandemic has created a human and social crisis of unparalleled scale, and the outbreak and its multidimensional influences have disproportionally affected persons with disabilities, including people with dementia, and especially those with pre-existing health conditions, people from low socio-economic backgrounds, those in low- and middle-income countries and those living in institutional settings such as nursing homes.

Enforced segregation and institutionalization continues, and many other breaches of human rights have been under the spotlight as never before.

Non-disabled people don’t talk about their ‘right to live independently and to be included in the community’, because their rights are not being denied, and the CRPD is meant to be an instrument to ensure the rights of people with disabilities.

Living independently and being included in the community are essential to quality of life and well-being of all, including of persons with disabilities.

In spite of the CRPD, many persons with disabilities experience discrimination and many other barriers and challenges on a daily basis without being able to enjoy these rights and freedoms.

These have not only been highlighted by, but they have been worsened by the COVID-19 pandemic.

It is our right to be treated with dignity and respect, and to equal inclusion, including full and equal access to the CRPD, like all others living with disabilities.

People with dementia are being left behind in the 2030 Sustainable Development Goals and the pandemic has significantly increased isolation and the violation of rights of persons with dementia. care and services for people with Non-Communicable Diseases (NCD’s) globally.

Statement prepared by Kate Swaffer, cofounder & CEO of Dementia Alliance International.