Category Archives: Copyright © 2021

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.

World Alzheimers Report wins European HealthCare Design Award

DAI is delighted to announce and congratulate one of our strategic partners, Alzheimer’s Disease International (ADI) on winning the European Healthcare Design (EHD) 2021 Award for Outstanding Contribution to Global Knowledge, for the World Alzheimer Report 2020, ‘Design, dignity, dementia: Dementia-related design and the built environment‘.

Each year, the European Healthcare Design (EHD) Awards aim to recognise and celebrate outstanding excellence in the realm of healthcare design in Europe and around the world across nine different categories. The competition is part of the European Healthcare Design Congress, an annual event organized by Salus Global Knowledge Exchange.

Read more about the award here…

Although registrations are not yet open, we are delighted that the lead authors Professor Richard Fleming, Kirsty Bennett and John Zeisel, along with the Acting CEO of ADI Chris Lynch will be presenting at the July Webinar next month to share more about this report, and how we can work together to create the much needed change needed to make our communities inclusive and accessible.

In response to the report, the lead co-authors have created a manifesto, with ADI, that calls on all of those involved in the support and care of people living with dementia to commit to an inclusive approach to dementia related design, at home, in residential care and in the community.

Read about & sign onto the Manifesto here.

Introducing our new Board of Directors

Introducing the incoming DAI Board of Directors, 2021-2022

The 2021 Annual General Meeting (AGM) was held this week, with a number of board members stepping down, and where four new board members were elected.

We first wish to thank and acknowledge the incredible work of our outgoing board members:

  • John Sandblom, from Iowa, USA
    DAI’s treasurer for many  years, and a co-founding board member
  • Eileen Taylor, from Brisbane Australia
  • Christine Thelker, from British Columbia, Canada
  • Bill Turner, from regional Queensland
Introducing our incoming 2021-21 Board of Directors:
  • Alister Robertson, Chair, New Zealand
  • Bobby Redman, Vice Chair, Australia
  • Diana Blackwelder, Treasurer, USA
  • Kate Swaffer, co-founding board member & CEO, Australia
  • Wally Cox, USA
  • Phyllis Fehr, Canada
  • Emily Tan Tan Ong, Singapore
  • Theresa (Terry) Montgomery, USA
  • Julie Hayden England, UK
We have included their biographis below, so you can also see the incredible expertise they bring to the board. They wil also soon be listed on the ABOUT page of our Website, with photographs to make it easier to recognise the, especially our new board members

Finally, we thank our volunteers, Sarah Yeates, Rebecca Hogan and Peter Watt, as well as Tamara Claunch (who has just stepped down).

Read their biographies on our ABOUT page.

Best wishes,

The Admin Team
Dementia Alliance International (DAI)
On behalf of the DAI Board of Directors
Dementia Alliance International

Note: we sometimes use voice recognition software for correspondence​ and newsletters; ​​hence there may be some grammatical errors or spelling mistakes, for which we thank you for your understanding.

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.

Virtual Civil Society Forum at CoSP14

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

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

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

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

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

“Access is crucial for equal inclusion and participation”

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

Watch LIVE the COSP14 from 15 to 17 June

Theme and sub-themes

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

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

Side Events with IDA Participation

Monday, June 14th

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

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

Tuesday, June 15th

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

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

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

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

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

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

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

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

Wednesday, June 16th

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

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

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

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

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

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

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

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

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

Thursday, June 17th

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

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

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

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

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

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

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

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

Friday, June 18th

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

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

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

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

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

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

News release:

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

These include:

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

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

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

Conference of State Parties on the CRPD June 2021

 

We provide the following information on the Civil Society Forum on June 14 and the 14th session of the Conference of States Parties (CoSP) to the Convention on the Rights of Persons with Disabilities (CRPD) takeing place from Tuesday, June 15th through to Thursday, June 17th. Both will be held largely online.

A Civil Society Forum, precedes the CoSP.

  • 14 June 2021: Virtual meeting of the Civil Society Forum

The Civil Society Coordination Mechanism is hosting the Civil Society Forum. This Forum will be an opportunity to highlight current issues relevant to the disability movement and realization of the CRPD in response to and recovery from the Covid-19 pandemic. It provides additional space for civil society to make its own contributions, and allow civil society to share and capture important issues.

Captioning, International Sign, French and Spanish simultaneous translation will be provided.
You can follow the civil society forum at: facebook.com/InternationalDisabilityAllianceIDA/

COSP14 will host Three Roundtables and One Interactive Dialogue with the UN system:

■ Roundtable 1: Protecting the rights of persons with disabilities in armed conflict and humanitarian emergencies
■ Roundtable 2: Living Independently, being included in the community
■ Round Table 3: Right to education: challenges with inclusive education and accessibility during COVID-19
■ Interactive dialogue among States parties, the United Nations system and other stakeholders on the implementation of the Convention

For more information about the COSP14 and the latest programme, please visit https://bit.ly/un-cosp14.

You are welcome to join and watch LIVE the COSP14 through the UN WebTV at http://webtv.un.org/ in all six United Nations’ official languages.

International Sign Interpretation and Closed Captioning will be provided for both events.

 

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.

“I 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.” 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.

“Based 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,” 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 — 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.” (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 EventTuesday 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 TodorovicHealth and Care Program Manager, Red Cross of Serbia and INPEA Europe
  • Bill MitchellPrincipal 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 HEREhttps://bit.ly/3x3YiSj

Watch now: LGBTI people Kindness and Dementia

To ensure we have Brain Health, we need Kindness!

The recording of our March Webinar with Dr Catherine Barrett is available now.

Her presentation outlines the work of the Celebrate Ageing program, including the Museum of Love – which explores the importance of love in the lives of people with dementia. It then outlines the key challenges that lesbian, gay, bisexual, trans and intersex (LGBTI) people face when they are diagnosed with dementia – in particular the lack of knowledge and compassion from families and service providers.

The presentation concludes by exploring how the stories of people living with dementia have been embraced by the Kindness Pandemic (a project set up under the Celebrate Ageing umbrella with over ½ million members) and how kindness is changing the way some people live.

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. 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.

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

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Welcome to Brain Health Awareness Month

Hello! We are already seven days into Brain Health Awareness Month, and have not yet posted anything about it! Oops!

So, to kickstart this theme, we are sharing an update from a senior leader and member of DAI, Valerie Schache, who recently took over hosting the twice monthly Brain Health Meetigns we hold as part of our Brain Health Hub.

Val writes:

Brain Health Hub is a very special arm of Dementia Alliance International. It came about when a number of enthusiastic people kept on talking about the benefits of the Bredesen type protocol.  It was then suggested we start our own group, which still meets fortnightly on a Tuesday morning for me in Australia.

I’ve contributed to the hub from the beginning  and continue to be passionate about the latest  research /science-based evidence but also people’s testimonials on what has changed their dementia journey. Most has been for the better but if an action hasn’t been wise or helpful re health or supplements;  that is also discussed.  The strength of the group is that no question can’t be asked.

In line with DAI principles, medical advice is not given but suggestions are made to discuss with your relevant health professional if this advice is suitable for you.

I’m Valerie Schache now 69- I’m called Val and I was diagnosed in 2015 as a  Young Onset Dementia. I have a mixed dementia and keep confounding experts as like many in the Brain Health Hub we have reversed some dementia symptoms, stabilised others and keep chasing  improvement.  I prefer  the guidance of Functional Integrated Medicine – aka a multi modal holistic approach of precision medicine.

My background – I grew up on a farm is South Australia and pioneered many things in farming and my 32 years in my physiotherapy profession. The most notable is to be the first acupuncturist physiotherapist in public health in all of Australia in 1989. TCM Traditional Chinese Medicine acupuncture helps  staying well with health  co- morbidities including dementia. I was a rural/ remote physio until moving to Ballina NSW  in 1987 and practiced till 2005.

Dementia deficits have not affected my considerable physiotherapy and acupuncture knowledge.  I can still read a scientific paper of any genre and give back six points in plain speak depending on my audience.  I have taken courses at our local University to distinguish fake science from credible research and findings.

I’m passionate about making a better way for people being diagnosed with MCI or dementia to be able to have a future and a hope. I didn’t laugh until I found DAI zoom support groups in 2016.

Being part of Brain Health Hub had allowed me to continue to   be a community educator for best practice and outcomes. It has given me great joy to see the likes of co- founder Maria Turner Paula Wolfert and Chrissy Theilker helped.  Bill Yeates is a fellow Aussie scientist  with insights and scientific approach.

I’m honoured to host the  DAI Brain Health Hub group. We welcome new people to come and join as they are able.  No questions can not be asked. I’ve found deep friendships develop over the time as we share triumphs and sorrows.  We have each other’s back and kindness covers all we do.

Meeting formats sometimes include a theme or specific topic, a video or a guest speaker.   The group is driven by the members ideas, themes, suggestions and most importantly, their needs.

Everyone is welcome!

People with and without dementia can join these meetings, whether you are supporting your own brain health, looking after someone with dementia, or simply interested in it. Please contact  us here to receive the emails with dates and login details.

Thanks Val!