Category Archives: CRPD

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 ‚ÄėIron Curtain‚Äô 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 ‚Äď 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 ‚Äď whether at home, on a bus, at a concert, a sports event, a restaurant, a doctor‚Äôs 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 ‚Äėgiven a voice‚Äô.

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 ‚Äď 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.

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 ‚Äď 9:45 am
Title: Protecting the Rights of Persons with Disabilities during Pandemics and Crises‚ÄĚ
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 Р9.45 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 Р9:45AM  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 ‚Äď 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 ‚Äď 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 ‚Äď 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 ‚Äď 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 ‚Äď 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 ‚Äď 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 ‚Äď 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 ‚Äď 11.15 AM EDT
Title:
Freedom to Live: Malta’s Path to 2030
Organized by: Malta

Time: 10.00 AM ‚Äď 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 ‚Äď 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 ‚Äď 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 ‚Äď 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

World Elder Abuse Awareness Day

Building Strong Support For Elders

At Dementia Alliance International, we prepare to observe World Elder Abuse Awareness Day (WEAAD), a day designated as 15 June.

WEAAD was initiated by the International Network for the Prevention of Elder Abuse (INPEA) in 2006, and recognised as a United Nations Day by the General Assembly in its resolution A/RES/66/127 adopted in 2011.

The resolution invites all Member States, organizations of the United Nations system and other international and regional organizations, as well as civil society, including non-governmental organizations and individuals to observe this day in an appropriate manner.

‚ÄúI call upon Governments and all concerned actors to design and carry out more effective prevention strategies and stronger laws and policies to address all aspects of elder abuse.¬† Let us work together to optimize living conditions for older persons and enable them to make the greatest possible contribution to our world.‚Ä̬†UN Secretary-General Ban Ki-moon

Elder Abuse does not have to be physical. Elder abuse covers emotional, social, financial, sexual abuse as well as neglect.

Those most likely to experience elder abuse and least likely to advocate for themselves are older persons, and especially those who live with dementia. It is a fact that Elder Abuse is more likely to occur when family members or care partners find themselves in times of great stress or worry, making people with dementia doubly vulnerable.

Dementia Australia CEO Maree McCabe said elder abuse is a serious issue that is likely to have become even more prevalent during the COVID-19 pandemic.

‚ÄúBased on international indicators, it is likely that between¬†two per cent and 14 per cent¬†of older Australians experience elder abuse in any given year, with the prevalence possibly higher during a time when people living with dementia were isolating at home,‚ÄĚ Ms McCabe said.

Addressing Elder Abuse

Elder abuse can be defined as “a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which causes harm or distress to an older person”.

It is a global social issue which affects the Health and Human Rights of millions of older persons around the world, and an issue which deserves the attention of the international community.

In many parts of the world elder abuse occurs with little recognition or response. Until recently, this serious social problem was hidden from the public view and considered mostly a private matter. Even today, elder abuse continues to be a taboo, mostly underestimated and ignored by societies across the world. Evidence is accumulating, however, to indicate that elder abuse is an important public health and societal problem.

Elder abuse is a problem that exists in both developing and developed countries yet is typically underreported globally. Prevalence rates or estimates exist only in selected developed countries ‚ÄĒ ranging from 1% to 10%. Although the extent of elder mistreatment is unknown, its social and moral significance is obvious. As such, it demands a global multifaceted response, one which focuses on protecting the rights of older persons.

From a health and social perspectives, unless both primary health care and social service sectors are well equipped to identify and deal with the problem, elder abuse will continue to be underdiagnosed and overlooked.‚ÄĚ (United Nations 2021)

Here at DAI we support our members through peer to peer support groups, online cafes, educational webinars and other information, as well as working on the world stage to reduce the stigma and discrimination associated with a diagnosis of dementia, as well as raising awareness of dementia as a human right issue along with other disabilities and diagnoses. Helping members to stay connected and to have trusted confidants outside their own family is a proven way to reduce the incidence of elder abuse to yourself or your loved ones.

Donate or partner with DAI today.

By doing so, you will make a tangible difference to the day to day lives of people with dementia. Thank you.

For World Elder Abuse Awareness Day, you may wish to attend this important virtual CoSP Side Event:

Access to justice 

Virtual Event, Tuesday 15 June 2021 at 09:00-10:15 EST (NY), 15:00-16:15 CEST (Geneva)

This year’s theme is Access to Justice. COVID-19 highlighted distressing reports of abuse and neglect of older persons in long-term care institutions and in the community where the majority of older persons live. Older persons who have experienced situations of violence, abuse and neglect face multiple barriers in accessing judicial remedies such as issues of accessibility, affordability, excessive delays and backlogs in judicial processes, impact of digitalization, gender bias, discrimination, and entrenched ageism in policy, norms and practices. Access to justice is a fundamental right in itself and an essential prerequisite for the protection and promotion of all human rights. 

An expert panel will discuss ways to overcome the barriers and showcase examples of access to justice by older persons who suffered violence, abuse and neglect, including during the current COVID 19 pandemic. 

Panelists: 

  • Claudia Mahler, Independent Expert on the enjoyment of all human rights by older persons¬†
  • Maria Soledad Cisternas Reyes, Special Envoy of the UN SG on¬†Disability¬†and Accessibility
  • Etienne Krug, Director of the department of Social Determinants of Health, World Health Organization
  • Tlaleng Mofokeng, Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health (TBC)
  • Natasa Todorovic,¬†Health and Care Program Manager, Red Cross of Serbia and¬†INPEA Europe
  • Bill Mitchell,¬†Principal Solicitor, Townsville Community Law Inc, Australia

Moderator: 

Silvia Perel-Levin, INPEA representative to the UN and Chair of the NGO Committee on Ageing, Geneva

The event will be accessible with sign language and captioning and it will have French, Spanish, German, Serbian  and Russian interpretation. It will also be webcast on http://webtv.un.org 

REGISTER HERE: https://bit.ly/3x3YiSj

Launch of the 4th ADI From Plan To Impact Report


DAI’s CEO & co-founder Kate Swaffer was recently invited to be a panellist at the ADI Side Event for the launch of their 4th ‘From Plan To Impact Report’.

We introduce this blog-post with a reminder there continues to be a lack of equal access to the CRPD and other Conventions for all people with dementia.

Below is the transcript of Kate’s brief presentation and summary of the Side Event.

Kate Swaffer, World Health Assembly 2021
ADI Side Event, 26 May 2021

Thanks so much Paola and thank you once again for the invitation to join this panel at this important World Health Assembly Side Event which you are hosting. As always, I feel humbled to represent the more than 50 million people living with dementia globally.

It’s been really inspiring to hear from our colleagues around the world, and the progress that is being made, and also to have examples of such great leadership from Indonesia and the Asia Pacific, and in Kenya and Africa. I guess as always, my role is to be a bit of a Devil’s Advocate, and I wanted to highlight a number of issues that people with dementia particularly feel need to be considered in National Dementia Plans.

There continues to be lack of recognition in policy, and in post diagnostic support and services for dementia that it is a major cause of disability.

There continues to be a lack of access to disability assessment and support, referrals to rehabilitation after diagnosis, although it is great to know that the WHO are currently developing guidelines on rehabilitation for dementia.

There needs to be a focus on Rights in national plans, and a focus on stigma and discrimination because all of the time I have been involved in this space I have not seen any change in the prevalence of stigma and discrimination, anywhere in the world [nor does research or the multiple reports about these issues].

What is frustrating for me personally and for people with dementia that I talk to, is that ADI were talking about a rights-based focus for dementia as far back as their report in 2012 that I have read, and I made three calls to action at the WHO First Ministerial Conference on Dementia in 2015, which were about:

  1. That we have human right to a more ethical pathway of care, that
  2. we have access to the same human rights and disability rights as everyone else, under the Disability Discrimination Acts and UN Convention on the Rights of Persons with Disabilities, and
  3. that research does not only focus on a cure, but on our care, including rehabilitation.

So, in summary we don’t seem to have come too far with progress for people with dementia. We have made progress but as Paola and others, and Tarun have said, we are well behind the 2025 target, and less than 100 countries have national dementia plans

  • We have made progress, but we are well behind the 2025 target
  • > 100 countries still do not have National Dementia Plans [in fact, only 40 contries have National Dementia Plans]
  • We do need a Rights based focus is needed in all national dementia plans and policies [comment in chat box of someone also advocating for that]
  • We need strategies to support well-being and quality of life for people with dementia and our families
  • It is important we need to strengthen health systems; only today I was talking to someone in Adelaide Australia where I live whose mother suddenly needs a significant amount of in-home care, and there is none available for the next 12 months. I live in a rich country, and this is not really good enough!
  • There is a growing concern on the impact of dementia on women and girls
  • There are still very poor diagnosis rates and poor post-diagnostic care
  • I totally agree the focus on risk reduction as with all other chronic diseases is imperative, and needs to be included in national dementia plans
  • Dementia must continue to be seen as a priority and we must not let it be diluted due to the very necessary responses due to covid.
  • Still poor diagnosis rates and lack of post diagnostic care
  • Risk reduction, in line with other diseases, is increasingly important

Dementia must continue to be seen as a priority, and not be diluted due to the very necessary responses we have all had to implement due to the COVID-19 pandemic

I do have hope, but also feel as Gill Livingston has said, the time to act is now.

Thank you.

Footnote: Governments, Alzheimer’s organisations, health care professionals and service providers all around the world need to use the UN Convention on the Rights of Persons with Disabilities to benefit people living with dementia, which was also highlighted in the 2012 WHO-ADI Report, Dementia: a public health priority.

Watch the ADI side event in full here:

Dementia and Rehabilitation by Emily Tan Tan Ong

We are pleased to publish the following article written by DAI member Emily Tan Tan Ong on Dementia and Rehabilitation, or rather, the lack of rehabilitation for people with dementia.

Emily mentions in her article that rehabilitation for dementia is not heard of in her country; most other DAI members also report it is unheard of in their countries.

As our CEO Kate Swaffer says: “If we are afforded rehabilitation after a stroke or other brain injury or medical condition, then we have the same right to be after a diagnosis of dementia. It won’t be a cure, and may not even slow the progression, but rehabilition does improve quality of life.”

I keep the patients alive. Rehabilitation gives them Quality of Life. 

(Dr. Tagio Tumas, Ministry of Health, WHO Rehabilitation 2030 Forum, Geneva, July 2019).

Dementia and Rehabilitation, by Emily Tan Tan Ong

With no means to significantly modify the progression of dementia and no cure in the foreseeable future, the rehabilitation approach is an integral part of living positively with dementia.

Rehabilitation, in its essence, is a set of interventions needed when a person is experiencing limitations in everyday physical, mental, and social functioning due to aging or a health condition, including chronic diseases or disorders, injuries, or trauma [1]. It is estimated that at least 1 in 3 people in the world are living with a health condition that would benefit from rehabilitation [2].

Despite this, rehabilitation has not been prioritized and is under-resourced globally.

A possible explanation could be rehabilitation is often perceived as an expensive and specialized service provided at the secondary care level and needed by those recovering from injury or stroke. Hence, the perception that rehabilitation is a luxury health service in addition to primary health care has caused it to be undervalued and ignored when competing demands for resources and investments.

As a result, people living with terminal, progressive health conditions like dementia, which require long-term rehabilitation services, are left behind when rehabilitation is not part of or accessible at the primary health care level.

Earlier on in my journey living with dementia, I was having difficulties with some of the everyday functioning. I was confused at the public transport interchange, overwhelmed with sequential tasks like cooking and baking, and not able to remember the content of the paragraph I just read.

It is like saying, “Sorry too bad you are diagnosed with dementia but there is nothing we can help you to continue living other than attending Adult Day Care Center or Memories Cafe. ¬†One is told that is the way life is going to be, living with dementia, losing one’s functional and cognitive abilities, and independence.

Hence, it is not surprising many newly diagnosed with young-onset dementia go into depression. It is emotionally tormenting to be alive and not able to do things when you still have insights into who you are, what you value, and how you want to live despite dementia.

Rehabilitation in dementia is unheard of in this part of the world where I live.

The” ESTEEM” cognitive rehabilitation program, a partnership between the National Neuro Institute and the Singapore Alzheimer Disease Association is available to individuals diagnosed with moderate young-onset dementia. Hence, I was left unsupported to cope with my cognitive impairment when Cognitive Rehabilitation (CR) interventions would have helped to ease in transitioning my life to the ‘new normal’ with dementia in a more positive and encouraging light.

I came across the GREAT Cognitive Rehabilitation project of Professor Linda Clare from the University of Exeter when looking for ways to self-help myself.

The program uses a goal-oriented approach to enable people living with mild to moderate dementia to “function optimally in the context of their intrinsic capacity and current health state” [3].

However, the GREAT project is delivered by trained therapists who then work together with each individual to formulate meaningful and intrinsically motivated goals that are realistic and potentially achievable. The drawback is that not everyone can access trained cognitive rehabilitation therapists.

The training materials available are for therapists specializing in cognitive rehabilitation. The content was wordy and conceptual, but I am determined to translate whatever information I could obtain into a self-help Cognitive Rehabilitation strategy. I took ages to read, comprehend the principles, and come out with ways to maintain or regain, or in some cases, compensate for my declining functional ability. It was the best thing I have done to sustain my independence and continue living the life I want. Three years down the road with dementia, I still cook, bake, and enjoy reading. I found that the Cognitive Rehabilitation strategies have enabled me to become stronger in areas I didn’t even consider would be possible. I learned to make bread at home, I regained my ability to use a laptop, and more apt at making Powerpoint slides. The best of all, I conquered my inadequacy and incompetency in writing. I now love to write for my blog.

I want to appeal to policymakers to acknowledge the rights of people living with dementia to rehabilitation services and make it part of the primary healthcare system. It is without a doubt that creating an accessible, dementia-friendly neighborhood help to remove external barriers to participation it is even more crucial to enable people living with dementia to participate in everyday life in a manner that is meaningful and purposeful to them. In this way, it also helps to dispel the public perception of incapacity in dementia.

References:

[1] Cieza A. Rehabilitation the health strategy of the 21st century. Arch Phys Med Rehabil. 2019; 100: 2212-2214

[2] Cieza A. et al.. Global estimates of the need for rehabilitation based on the Global Burden of Disease Study 2019: a systematic analysis for the Global Burden of Disease Study 2019. Lancet. 2020; 396: 2006-2017

[3] Clare L (2017) Rehabilitation for people living with dementia: A practical framework of positive support. PLoS Med 14(3): e1002245. https://doi.org/10.1371/journal.pmed.1002245

Ps. Don’t forget to register for our next “Meeting Of The Minds” Webinar,¬†Disrupted! Resiliently Reintegrating After Stress & Adversity by Dr Kozhi Sidney Makai.

Assoc. Professor James McLoughlin presents here on rehabilitation and dementia at a DAI Webinar hosted in 2016. It is still a hard sell!

 

 

 

 

 

 

 

 

 

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 ‚Äėtriple jeopardy‚Äô 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.

Video: Our rights under threat as we grow old

The recording of the virtual Side Event held today during the 13th session of the Conference of States Parties to the CRPD is available to watch now.

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

1 Dec 2020: A discussion on the disproportionate impact of the COVID-19 pandemic on older persons and persons with disabilities, exacerbated by existing ageism, ableism, and shortcomings in support systems and residential care.

Speakers:

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

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

It is also avalable to view on the on the webtv.un.org:  http://webtv.un.org/watch/our-rights-under-threat-as-we-grow-old-a-timely-expert-discussion-on-the-intersection-of-disability-and-age-cosp13-side-event/6213396021001/

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 ‚Äď 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 ‚ÄúThe 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.‚Ä̬†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 ‚Äėbest interests‚Äô or as ‚Äėinterventions‚Äô to manage what are commonly referred to as the Behavioural and Psychological Symptoms of Dementia.

The focus on ‚Äėculture change‚Äô 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.