Please note, this virtual cafe is for DAI members, our families, our friends and DAI supporters. Everyone is welcome.
Christine and Janet have planned a fun programme, including a surprise visit from Father Christmas, live music from Graeme Atkins, and a beautiful song written by DAI member James McKillop and performed by his friend, Callum McNab.
Wally will hopefully keep us all on track with his wonderful sense of humor.
We look forward to seeing you very soon!
Christine, Janet and Wally
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.
Ever year on December 10, we observe Human Rights Day, which is the day the United Nations General Assembly adopted, in 1948, the Universal Declaration of Human Rights (UDHR). This is a milestone document that proclaims the inalienable rights which everyone is entitled to, includign people with dementia. They are rights which must be afforded to all human beings, regardless of race, colour, religion, sex, language, political or other opinion, national or social origin, property, birth or other status. It is available in more than 500 languages, it is the most translated document in the world.
This years theme relates to the COVID-19 pandemic and focuses on the need to build back better by ensuring Human Rights are central to the global recovery efforts. We must all work together to create equal opportunities for all, and address the failures exposed and exploited by COVID-19. We must then ensure and advocate for everyone to apply human rights standards to tackle entrenched, systematic, and intergenerational inequalities, exclusion and discrimination.
Never before have the inequities and violations of human rights of those living with dementia and their families been so exposed.
Let us all ensure 10 December is our opportunity to collaborate, co-operate and work together to reaffirm the importance of human rights in re-building the world we all want, and the need for global solidarity as well as our interconnectedness and shared humanity.
Below we share the what the United Nations has outlined for us all, to work towards.
The COVID-19 crisis has been fuelled by deepening poverty, rising inequalities, structural and entrenched discrimination and other gaps in human rights protection. Only measures to close these gaps and advance human rights can ensure we fully recover and build back a world that is better, more resilient, just, and sustainable.
The Dementia Alliance International (DAI) membership joins the rest of the world on Thursday 3rd December 2020 to observe the International Day of Persons with Disabilities under the theme “Toward a disability inclusive, accessible and sustainable post COVID-19 world”.
The annual observance of the International Day of Persons with Disabilities was proclaimed in 1992 by United Nations General Assembly. It aims to promote the rights, quality of life and well-being of persons with disabilities and to increase awareness of their situation in every aspect of political, social, economic, and cultural life.
Until recently, people with dementia have been left behind, including in those events and discussions about persons with disabilities, as too few understand dementia is a major cause of disability ad dependence in older persons globally. Many age-related health conditions also cause disability, and the global data does not yet reflect these cohorts.
As the world grapples with the effects of the Covid-19 pandemic, many decisions by policy-makers have failed to take into consideration the rights of persons with disabilities enshrined in the UN Convention on the Rights of Persons with Disabilities (CRPD) and the Sustainable Development Goals (SDGS). This is evident in a recent report following a global study which examined the extent to which COVID-19 pandemic has exposed some deep structural inequalities in society.
Data gathered from a study done by for one report “COVID-19, Amplifying Voices: Our Lives, Our Say”, is evidencing that persons with disabilities, older persons, and persons from lower socioeconomic status backgrounds are among those hardest hit by the pandemic.
While this particular report puts a spotlight on the voices of blind and partially sighted persons, many of the experiences shared strongly resonate with numerous other studies conducted by other organizations of persons with disabilities internationally.
In order to ensure that no one is left behind in any aspect, we take this opportunity to call for effective collaboration with representative organizations of persons with disabilities, governments, communities, civil society, UN and other international agencies, and the private sector as we collectively strive to build and sustain a better, more inclusive post-COVID society.
We especially call for governments and health care professionals to accept dementia as a condition causing multiple and progressive disabilities, and to provide disability assessment and support immediately following a diagnosis, including rehabilitation.
Our rights under threat as we grow old: A timely expert discussion on the intersection of disability and age.
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.
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).
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
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.
The COVID-19 pandemic has exposed in tragic ways the combined effects of ageism and ableism on the rights of older persons with disabilities. Both groups – older persons with or without disabilities, and persons with disabilities regardless of their age – have been disproportionately impacted by the pandemic. Older persons with disabilities have been hit the hardest.
Pre-existing barriers have both been magnified by the crisis and mirrored in the response. Older persons, persons with disabilities, especially those living in congregate settings, were identified early in the pandemic as persons at particular risk. Yet, the long-term care sector generally, and residential care in particular, have been largely overlooked in the preparedness and response measures. This resulted in the neglect, abuse, and high rates of death of older people in residential care as well as interruption of essential services for older people living at home.
As a result of Covid-19 related lockdowns, older people with disabilities face restrictions to their freedom of movement as well as barriers to food, healthcare, employment, support in tasks of daily living, and emotional connection. These barriers are magnified for those living in areas of armed conflicts and humanitarian emergencies.
Going forward, it is essential to use the lessons of the crisis to better protect the rights of older persons with disabilities. This includes addressing the chronic neglect of long-term support services and residential care while prioritizing person-centred, integrated, community approaches that put people and their dignity front and centre.
A rights-based approach to ageing and disability also calls for addressing discrimination and empowering people to meaningfully participate in the decisions that affect them.
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.
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:
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.
The Convention on the Rights of Persons with Disabilities (CRPD) was adopted by the General Assembly by its resolution 61/106 of 13 December 2006. It came into force on 3 May 2008 upon the 20th ratification. Article 40 of the Convention stipulates that “The States Parties shall meet regularly in a Conference of States Parties in order to consider any matter with regard to the implementation of the present Convention.” Since 2008, 12 sessions of the Conference of States Parties have been held at United Nations Headquarters, New York.
Presented by: Dr. Shibley Rahman, QS PhD MRCP (UK) LLM MBA, Special advisor in disability, NHS Practitioner Health
About the Webinar: Delirium is a common phenomenon in individuals with pre-existing dementia. It is now thought even possibly to accelerate cognitive decline. Known for its abrupt effect on individuals, as a sudden change in personality and behaviour, with marked cognitive change in attention, it is distressing to watch as a carer, and distressing to experience as a patient. It is important to identify, however, as it is a significant common medical emergency. It is important to be cognisant about its existence in all care settings, including domiciliary and residential care. This seminar will consider what delirium is, how and why it should be identified, what are its consequences, as well as considering contemporary aspects of care and research. It will also consider its wider significance in the COVID-19 pandemic.
About Dr. Shibley Rahman: Dr Shibley Rahman is a carer for a mother with dementia. He is also an experienced academic in geriatric long-term conditions, especially dementia, delirium and frailty. He graduated from Cambridge in 2001 with a first, where he also did his Ph.D. in dementia, with ground-breaking research on the diagnosis of behavioural variant frontotemporal, dementia. He is also a trained academic lawyer, from London, and a member of the Royal College of Physicians of London. He currently works improving the health and wellbeing of the NHS workforce, as a special advisor in disability.
Wednesday, November 25, 2020 (USA/CA/UK/EU):
Thursday, November 26, 2020 ( AU/NZ/ASIA):
The Webinar runs for up to 1.5 hours.
Check your time if not listed above with this link.
COST TO ATTEND:
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The Economic and Social Council (ECOSOC) is at the heart of the United Nations system to advance the three dimensions of sustainable development – economic, social and environmental.
It is the central platform for fostering debate and innovative thinking, forging consensus on ways forward, and coordinating efforts to achieve internationally agreed goals. It is also responsible for the follow-up to major UN conferences and summits.
The UN Charter established ECOSOC in 1945 as one of the six main organs of the United Nations.
DAI is very proud to have now received ECOSOC status with the United Nations(2020).
What does ECOSOC do?
DAI’s September Webinar on “Human rights as a practice model in residential aged care“, is presented by International dementia consultant Daniella Greenwood, who has a Bachelor of Arts (Hons 1), a Bachelor of Health Science (Leisure & Health/Therapeutic Recreation) and a Diploma of Diversional Therapy.
DAI is honoured to have had Daniella present on this very important topic to our audience.
About the webinar: Paternalism structures the lives of people living with dementia in residential/long-term care and diminishes their status as equal citizens. Person-centred and relationship-centred approaches have failed to address the deeply embedded philosophical and operational influence of the medical/institutional model and paternalistic assumptions. People living with dementia in these institutions continue to be treated as patients rather than as adult citizens, exposing them to regular, unchallenged and often casual breaches of their human rights justified as ‘best interests’ or as ‘interventions’ to manage what are commonly referred to as the Behavioural and Psychological Symptoms of Dementia.
The focus on ‘culture change’ has further obscured our urgent obligation to address the blatant and often state-sanctioned human rights breaches in residential/long-term care – which in any other care context would be regarded as profoundly unjust and, in many instances, illegal. A human rights lens is applied with practical examples outlining the possibility of creating an environment of recognition and true respect in long-term care through solidarity in aligning operations, attitudes, practices and processes with the United Nations Convention on the Rights of Persons with Disabilities.
About Daniella Greenwood: Daniella an international consultant, speaker and published author specialising in human rights policy and practice in long-term care. Her dissertation looked at human rights practice as it relates to citizen residents living in the later stages of dementia. She has presented her work to federal parliamentarians and as a keynote speaker including for Alzheimer’s Disease International in 2015 and Dementia Action Alliance in 2019. Daniella is also a musician who has composed and performed music to accompany some of Kate Swaffer’s poetry.
About DAI: Dementia Alliance International (DAI is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positively than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.
Membership of, and services provided by Dementia Alliance International is FREE, and open to anyone with a diagnosis of any type of dementia.
Join DAI here: www.joindai.org Read our newsletters or regular blogs, by subscribing here: www.dementiaallianceinternational.org
Since you’re here… we’re asking viewers like you to support our members, by donating to our organization. With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world, our work has never been more important. Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.
DAI is pleased to highlight a panel presentation by DAI Board member, Christine Thelker from Canada, at an important webinar on dementia and palliative care during COVID and beyond. Thank you Christine, for speaking up for all of us.
All of the presentations and discussions were not only informative, they were extremely enlightening. Christine’s speech comes in at 4:40 mins in the video recording of the session:
Slide 1: I would like to start by thanking ADI, for the invitation to offer my reflections on this important topic, and congratulate you on hosting this important webinar.
Slide 2: The topics I will cover today are
Slide 3: DAI COVID-19 graphic of services, for reference.
For people with dementia like myself, we have been facing serious discrimination in terms of being denied health care, and we are definitely never offered Palliative Care until the very end stage, this was and is the case long before Covid 19.
You can see that DAI have been very proactive in terms of providing support for people with dementia during the pandemic, and this slide highlights our support.
Because palliative care is based on individual needs, the services offered will differ. I have lived experience of palliative care, for myself, and for members of my family, and past professional experience working on Demetia units in Long Term Care in the nursing feild.
Since the covid pandemic, many people have not been able to access palliative care, and are therefore being denied adequate relief of pain or other symptoms of illness such as nausea and vomiting and others.
Resources such as equipment needed to aid care at home, Assistance for families to come together to talk about sensitive issues,Links to other services such as home help and financial support.
Support for people to meet cultural obligations, Support for emotional, social and spiritual concerns, as well as Counselling and grief support for them and their families has also been missing.
Many people are in fact, dying alone.
Slide 4: I am more frightened by the thought of ending up in any type of care than I ever have been of my dementia itself. As an advocate, I don’t just want to feel good about what I am doing, I want tangible change.
We are facing even more stigma and isolation since the covid pandemic, as are most older people.
Palliative care helps people live their life as fully and as comfortably as possible when living with a life-limiting or terminal illness, it identifies and treats symptoms which may be physical, emotional, spiritual or social.
As Kate Swaffer says: “People with-OUT dementia are not used to enforced isolation, or social and physical distancing, while people with dementia experience it from the day we dare to share our diagnosis.”
Isolation, stigma, discrimination and distancing (social and physical) are the daily realities of most people living with dementia.
We are all facing increased difficulties due to limited access not only to equipment, in home support, equipment including PPE, and health care including palliative care.
More people over 80 have died from covid, without access to Palliative Care, and without the support of their families, due to the restrictions imposed upon health care systems and society in general.
Covid 19 has highlighted that a great many people are experiencing personal signs of distress. This is a normal human responses to the pandemic, but one which has highlighted that people with dementia are having normal human responses or signs of distress to the changes forced on them by dementia – rather than BPSD.
Related to palliative care, is Advance care planning, which is more important than ever in these uncertain times. In the months ahead,thousands of people will face the prospect of becoming suddenly and seriously unwell. Distressingly, they will probably have to face being denied health care.
I’m concerned that many people do not have an Advanced Care Directive, mainly because they don’t understand that just because we tell our people what we want does not mean that will happen if its not on a legal document. and many people over 65 are without an Advance Care Directive, creates serious and probmatic issues as we face the impact of the COVID pandemic.
An Advance Care Directive is important as nearly 50 percent of people who become ill, will not be able to make their own end of life medical decisions at this very difficult time in history, although it may make no difference at this point as the elderly and infirmed, including people with dementia are being denied medical care.
This is an all too real, sad and sobering thought.
Again, this highlights yet another area we have failed our most vulnerable.
Slide 5: This slide highlights the services available from Dementia Alliance International. In closing, I want remind you of my quote from earlier that clearly states how I feel:
“I am more frightened by the thought of ending up in any type of care than I ever have been of my dementia itself”.
About Christine Thelker: Christine is a board member of Dementia Alliance international having served as one for a number of years now. She also co-hosts a number of peer to peer support groups. She is from Vernon British Columbia Canada, and describes herself as bright, fun and adventurous. Who at 59 says, her sense of humour has grown, since her diagnosis. Widowed at 47 and then diagnosed with Vascular Dementia and Cerebrovascular Disease at 56. Christine worked for Interior Health Authority for 13 years in various sites, most loved work was in Dementia Care and End of Life Care. It was here that she felt she did her best work.
Advocating for families and Patients, advocating for better training for workers working in Dementia Care, and although she says things still have not changed, she is hopeful with more people using their voices the changes will happen. She knows firsthand how people’s abilities are stripped instead of embraced and advocating is the only way to make change happen. She also advocated for better working environments for the workers. In June 2020, Christine’s first book was published, For This I Am Grateful, and she continues to advocate and write about the need for a human rights approach to dementia. Christine’s motto since diagnosis is “I’m not done yet”.