Category Archives: CRPD

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.

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

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

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

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

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

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

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

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

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

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

Lyn Rogers shares why she is glad she joined DAI

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

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

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

https://youtu.be/pCYeS8NERbo

Since you’re here…

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

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

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

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

 

World Alzheimers Report 2020: Design, Dignity, Dementia: Dementia-related design and the built environment

On day 23 of World Alzheimer’s Month/Dementia Awareness Month #DAM2020 we are pleased to share the Alzheimer’s Disease International World Alzheimer Report launched yesterday on World Alzheimer’s Day: Design, Dignity, Dementia: Dementia-related design and the built environment. Our ¬†daily series is varied and we hope, relevant, and this topic is critical to the future of dementia care.

Increased awareness had been desperately needed of the potential of good design to improve equal access for people with dementia, and there has been increasing urgent global demand by people living with dementia to see this translated into practice.

The two volumes of the 2020 World Alzheimers Report have brought together the principles and practice, and will be an important resource now and into the future.

The webinar hosted by ADI was extremely well attended, with more than 1100 who registered, and over 600 people from 77 countries who logged in and attended the live event.

An important theme running through the webinar was around dignity – or the lack of dignity accorded to people living with dementia by certain design methods. Panelist Kevin Charras PhD showed a slide of different examples of this, stating: ‚ÄúIt‚Äôs quite appalling when design relies on stigma and stereotypes of dementia. It turns into furniture that is vintage, colours and contrasts that are exaggerated, and signage that is triple in size, and streets inside buildings, which becomes very confusing.‚ÄĚ

Watch the recording of the webinar here:

World Alzheimer Report 2020_Vol1

World Alzheimer Report 2020_Vol2

Kate Swaffer presented at the webinar, and has provided her slides here and speech notes below.

Disability Rights, Enabling Design and Dementia

Kate Swaffer, ADI Webinar, 21 September 2020

Slide 1 ‚Äď Disability Rights, Enabling Design and Dementia

Thank you to Paola and ADI for launching such a critical report, and congratulations to the report co leads Richard, John and Kirsty for your a very impressive report.

It is very comprehensive, and I’m sure it will become an influential report into the future. Thanks also to Richard for the opportunity to contribute to it.

Slide 2 – Reframing Dementia as a disAbility

The World Health Organisation (WHO) clearly states that dementia is one of the major causes of disability and dependency among older people worldwide and through campaigning at the 2016 WHO Mental Health Forum in Geneva, cognitive disabilities were added as a fourth category under the mental health umbrella. Now that dementia is being described in UN documents as a cognitive disability, we are reminded that people with dementia are fully recognised by the UN as rights bearers under the CRPD treaty.‚ÄĚ

In an article I co-authored with Prof. Richard Fleming, Dr Linda Steele and others, we quoted Susan Cahill, who noted, the CRPD ‚Äėallows for a new and exciting dialogue to emerge, where the framing of dementia is no longer characterized by stigma, fear and exclusion, but rather, where the individual with dementia is viewed as a legitimate part of mainstream society‚Äô.

Once we accept that ‚Äėdementia is a major cause of disability‚Äô we understand it is a critical reason why it is so important the built environment for people with dementia is accessible, in the same way we provide wheelchair access.

With the rise of a disability rights movement for disabilities caused by any type of dementia, predominantly being led by people with dementia globally, we have come to understand the problem is not with the person with dementia, but about the environment being made accessible.

This of course, includes the physical and built environments.

Disability arises out of the interaction between a person with a health condition, and the environment in which they live and work.  A health condition causing disability can include a stroke or a diagnosis of dementia, a long-term health condition such as mental illness, or through losing a limb or another physical function due to an accident.

As this slide shows, we have icons that equate to action, including in most countries, legislation, for most of the more visible disAbilities ‚Äď it is now time for the invisible disabilities such as sensory or communication disabilities, to be included in building design, and in the way organisations operate.

What use is my wheelchair, if there is no ramp or lift to allow me access?

Similarly, what use is it me going to the bank or supermarket, if the staff can’t communicate with me?

Not to provide equitable access, including through the built environment for everyone is like asking someone without legs to climb a flight of stairs.

Slide 3 – Human and Legal Rights

Even though people with dementia still retain the same rights as anyone else in society, including human rights and disability rights, there has been little change in the realisation of these rights.

A human rights-based approach is about making people aware of their rights, whilst increasing the accountability of individuals and institutions who are responsible for respecting, protecting and fulfilling rights.

The WHO Global Dementia Action Plan for a Public Health Response to Dementia identifies human rights (and specifically the CRPD) as one of three ‚Äėcross-cutting principles‚Äô.

The principles included in the Convention on the Rights of Persons with Disabilities and its Optional Protocol (CRPD) are clear; it is up to us to provide people with any kind of disabilities with the options to make those choices.

We cannot live with dignity, if we are not provided with access to live with dignity and respect.

We cannot participate equally, if we are not provided with the access to do so.

All of these principles are underpinned by the built environment, and our responsibility to ensure access to it, as we do with other disabilities.

The use of these principles allows a design to respond in different ways to people’s needs, preferences, lifestyles, cultural and socio-economic backgrounds, as well as the local climate and geography.

No longer can we pick and choose what rights we wish to uphold, or only focus on e.g. rights to dignity or health, which when interpreted do not disrupt the current medicalised approach to dementia;

Disability rights and disability access matters to me; in fact I cannot maintain my independence without it.

I hope they also matter to you.

People with physical disabilities have made major progress as substantial, influential members of society.

Yet we are still being left behind, not only in terms of health and social care, but in terms of recognition and the management of dementia as a condition causing disability and therefore of legislated disability support including enabling and accessible built environments and communities.

What this means is that people with cognitive disabilities caused by dementia are still being denied the most basic access to live independently in their communities.

Slide 4 – The built environment and disability

The environment’s influence in creating disability or in increasing it has been well established and is seen as integral to the definition of disability and is integral to the definition of disability. When the built environment changes, then the experience of someone living with a disability will also change.

The paradigm change introduced many decades ago by the disability rights movement has made modifying the built environment for accessibility commonplace, and in most countries, legislated. We are all so familiar with accommodations for physical disabilities that it is rarely an issue, as accessible bathrooms, guide-dogs, assistive listening systems, or wheelchair ramps are available almost everywhere.

As the image of this wheelchair shows us, even wheelchairs are being made much more accessible than when they were first in use. This is how we must view the built environment too, as we need equitable access for all.  We know that most people who have dementia or who are older and require assistance with our daily activities, would prefer to continue to live in their own communities and stay in their homes, and society has a responsibility to ensure equal access as all of its citizens.

Slide 5 ‚Äď Thank you

We must all work towards ensuring the built environment for people with dementia is accessible.

  • We don‚Äôt need more reports or more rhetoric.
  • What we really need now is ACTION.

Thank you.

Kate Swaffer, MSc, BPsych, BA, Retired nurse
Chair, CEO and co-founder, Dementia Alliance International
Board member, Alzheimer’s Disease International

Since you’re here…

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

 

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

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

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

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

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

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

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

Register here…

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

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

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

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

The Webinar runs for up to 1.5 hours.

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

Register here…

YOUR DONATIONS SUPPORT DAI IN MANY WAYS:

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 200.00 covers the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

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

Support people with dementia:

THANK YOU

**************************************************************************

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

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

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

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

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

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

Dear Kate,

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

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

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

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

Thank you very much.

Sincerely,

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

Jon Lom√ły, Special Representative
Ministry of Foreign Affairs, Government of Norway

Vladimir Cuk, Executive Director
International Disability Alliance

Human Rights and the Confinement of People Living with Dementia in Care Homes

Todays blog is an important Human Rights Law Journal article, Human Rights and the Confinement of People Living with Dementia in Care Homes published on 18 June 2020.

By Linda Steele, Ray Carr, Kate Swaffer, Lyn Phillipson, and Richard Fleming.

Abstract: This paper responds to growing concerns in human rights practice and scholarship about the confinement of people living with dementia in care homes. Moving beyond the existing focus in human rights scholarship on the role of restrictive practices in confinement, the paper broadens and nuances our understanding of confinement by exploring the daily facilitators of confinement in the lives of people with dementia. The paper draws on data from focus groups and interviews with people living with dementia, care partners, aged care workers, and lawyers and advocates about Australian care homes. It argues that microlevel interrelated and compounding factors contribute to human rights abuses of people living with dementia related to limits on freedom of movement and community access of people living with dementia, at times irrespective of the use of restrictive practices. These factors include immobilization and neglect of residents, limited and segregated recreational activities, concerns about duty of care and liability, apprehension of community exclusion, and pathologization and subversion of resistance. It is necessary to challenge the organizational, cultural, economic, and social dynamics that shape day-to-day, microlevel, routine, and compounding factors that remove the agency of people living with dementia and in turn facilitate entrenched and systematic human rights breaches in care homes.

You can download the full article here…

This article is one of three, as part of a research project many members of DAI were involved in as participants of the research, and at the Summit. The project ‚ÄėSafe and Just Futures of People Living with Dementia in Residential Aged Care‚Äô aimed to explore:

  • current barriers to liberty and¬†community access for people living¬†with dementia in RACFs; and
  • the possibilities and challenges of¬†utilising a human rights framework¬†to transform the living and support¬†arrangements of people living with¬†dementia in RACFs.

The first published article, Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes, was published last year, and the anthology and project report was published earlier this year, also available to download here.

#HumanRights4All…

Supporting people with dementia through COVID-19

This DAI infographic provides an easy reference to support for people with dementia globally.

During the current COVID-19 pandemic, members of DAI and almost all others are rightfully extremely worried about the impact on their day to day lives of this outbreak, including being able to shop in their communities for the most basic of supplies.

In most countries cinemas, almost all essential services such as restaurants, conference venues, hairdressers, beauty therapists and nail salons have been ordered to close. Physical distancing measures are in place (commonly referred to as social distancing), In some countries, no more than two people can meet in any one group, and they must be 1.5 metres apart.

DAI is providing additional support to DAI members at this difficult time by hosting a number of extra support groups, reported on recently.

If you have demenetia, or know someone who does, please refer them to DAI, or to their local or national Alzheimer’s organisation, as many are also now providing online support.

These are extraordinary and extremely stressful and upsetting times for most people, perhaps especially older persons and marginalised groups such as people with dementia, and the information  below may be of interest.

It is a challenging time for everyone, and enhances why access to clear, accurate, and up-to-date information is essential.

Alzheimer’ Disease International (ADI)

ADI has recently published a¬†position¬†paper on COVID-19 with members of their Medical and Scientific Panel, which as their strategic partner,¬†our Chair Kate Swaffer was asked to contribute as an author, and provide a quote. The global impact of¬†COVID-19¬†is unprecedented, particularly on vulnerable groups such as people living with¬†dementia¬†and their families and caregivers.¬†We hope that by sharing such information, we can¬†assist persons and families in making informed decisions about how, when and where to seek help at this difficult time. You can read the full article here…

Within the article, several important topics are addressed:

  • Is¬†COVID19¬†different for people with¬†dementia?
  • Different countries’ guidance on¬†how and when to seek further treatment
  • Difficult decisions around hospital admission and triage
  • Other information on¬†COVID¬†prevention and treatment and additional challenges to consider for people living withdementia
The World Health Organisaton (WHO):

The WHO provides daily updates and many other resources Рhttps://www.who.int/emergencies/diseases/novel-coronavirus-2019 and including a very recently released publication for children Рhttps://www.who.int/news-room/detail/09-04-2020-children-s-story-book-released-to-help-children-and-young-people-cope-with-covid-19

The following is a précis of recently received information from the WHO Working Group webinar on COVID-19 and Non Communicable Diseases (NCDs) webinar:

The United Nations three strategic priorities:
  1. Contain the spread of the COVID-19 pandemic and decrease morbidity and mortality (WHO SPRP/2)
  2. Decrease the deterioration of human assets and rights, social cohesion and livelihoods
  3. Protect, assistant and advocate for refugees, internally displaced people, migrants and host communities particularly vulnerable to the pandemic.
The WHOs three strategic priorities:
  1. Rapidly establishing international coordination and operational support
  2. Scaling up country readiness and response operations
  3. Accelerating priority research and innovation.

Links between COVID-19 and other Non-Communicable Diseases What we know so far:

  • People of all ages can be infected by COVID-19.
  • The risk of becoming severely ill with the virus appears to increase for people who are 60+.
  • People living with NCDs also appear to be more vulnerable to becoming severely ill with the virus, in particular people living with:
  • Cardiovascular disease (e.g. hypertension, persons who have had, or are at risk for, a heart attack or stroke)
  • Chronic respiratory disease (e.g. COPD)
  • Diabetes
  • Cancer
  • Smokers are likely to be more vulnerable to COVID-19

The International Disability Alliance (IDA) is providing many updates to the disability community, as well as hosting webinars and live Facebook chats. DAI has regular opportunities through the IDA to contribute to policy and publications about disability to ensure people with dementia are included.

Many other orgnaisations are hosting webinars and live Facebook chats; listing them here is difficult as there are simpy too many, and new opportunitiues from different organisations and individuals are emerign every day.

Please contact us if we can assist in any way.

What we can’t do alone, we can do together.