We continue to share written or video stories, poems, and other stories of interst from our members, as part of o ur World Alzheimer’s Month – Dementia wareness Month activities. Today we are sharing a presentation made by DAI Board member Phyllis Fehr.
On June 8, Phyllis provided a statement for the United Nations Online Regional Consultations with people with disabilities and their representative organizations in the Caribbean and North America;
“From isolation, invisibility and segregation into inclusion of people with disabilities in the community. Identifying and overcoming barriers to the successful process of deinstitutionalization”
How people with disabilities isolated, marginalized, excluded, segregated or institutionalized in the Caribbean and in North America regions? How can these practices end?
As a woman living with Young Onset Dementia, I sat back with dread, fear and utter disbelief as I watched what was happening in the long-term care sector for people living with dementia.
These people were being further isolated and segregated. They were subject to disgraceful living conditions, in some instances. They were placed in their rooms with no interaction from others. Some received no assistance with activities of daily living or feeding. They were unable to have visitors or even accept video calls in the early stages of the COVID pandemic.
I watched as the early numbers grew and grew and, I watched as these people were not given a choice as to what was happening to them with regards to their care. I also watched in amazement at how decisions were being made about, and for, people living with dementia without any input from them or a family carer. This in itself scares me and makes me wonder what it’s going to be like when I need to go into care, after I can no longer care for myself.
Some people with Alzheimer’s disease [or other dementias] are unable to understand what’s happening or even communicate their needs or understandings. That is why I would like to see the care settings turned into small 4 to 6 bed residences, with a home-like environment, within a residential community – where the paid care staff are able to learn, have human rights training and have a better understanding of the person they’re caring for. That way they are seen as an individual not as a patient.
Moving from a medical model to a more social model of care, clients will get more personalized care in a more understanding setting. This type of setting will help to alleviate the spread of infections and diseases throughout, not like in large institutions. It will help to minimize the devastation that happens to people in institutional settings. In these smaller group settings, people living with dementia will have more contact with care givers and will not feel the isolation they experienced in the larger setting, during the COVID epidemic.
The staff-to-patient ratio will be much better rather than eight-patients to one nurse. it could be three patients to a Personal Support Worker. This will greatly improve the actual hands-on-care, the understanding, and the standard of care that these patients will receive. We could have multiple homes in one neighbourhood, allowing for visits and get-togethers with other homes.
We know that people living with dementia do much better when they are kept engaged and are able to interact with others. In small group home settings, this is more achievable than in the larger settings. I firmly believe that this is the way to go in the future, so that we are able to remain in our community and have a sense of belonging.
We may have a cognitive impairment, but we are still able to understand and engage until late in the disease process. We all have human rights let’s abide by them.
On May 15 each year, DAI joins the world in observing the UN International Day of Families (IDF).
This year it focuses on the impacts of new technologies on the well-being of families. Megatrends including new technologies, urbanization, migration, climate change and changing demographics are dramatically reshaping our world.
These megatrends impact families around the world, including the families of people living with dementia.
It is up to all of us to ensure digital technologies support the transition towards sustainable development and enable the well-being of all people.
Technology is critically important to the work that DAI does.
As an early adopter of Zoom, DAI has been providing free online support groups and educational webinars for seven years. For people with dementia – and their families – as well as education through zoom for professionals, researchers, ehlth care professionals and the whole community – these events really matter.
Digital technologies like video conferencing and social media make it possible for people with dementia and their families to stay connected in an ever-changing world.
At Dementia Alliance International, we believe in a world where all people are valued and included.
If you do too, please consider becoming a regular supporter.
Your donation helps provide free online support groups for people living with dementia, and free community educational opportunities for families, friends, care partners, and the wider dementia community. Every dollar makes a difference in the life of someone living with a diagnosis of dementia!
And if you work with people with dementia, or know someone with dementia, please refer them to join DAI for free services and support, especially the ‘life-saving’ peer to peer support groups.
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.
The 2020 theme is ‘Recover Better: Stand Up for Human Rights’
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.
End discrimination of any kind: Structural discrimination and racism have fuelled the COVID-19 crisis. Equality and non-discrimination are core requirements for a post-COVID world.
Address inequalities: To recover from the crisis, we must also address the inequality pandemic. For that, we need to promote and protect economic, social, and cultural rights. We need a new social contract for a new era.
Encourage participation and solidarity: We are all in this together. From individuals to governments, from civil society and grass-roots communities to the private sector, everyone has a role in building a post-COVID world that is better for present and future generations. We need to ensure the voices of the most affected and vulnerable inform the recovery efforts.
Promote sustainable development: We need sustainable development for people and planet. Human rights, the 2030 Agenda and the Paris Agreement are the cornerstone of a recovery that leaves no one behind.
Considering the higher risks confronted by older persons during the outbreak of pandemics such as COVID-19, policy and programmatic interventions must be targeted towards raising awareness of their special needs.
Recognizing older persons contributions to their own health and the multiple roles they play in the preparedness and response phases of current and future pandemics is also important.
The 2020 theme for the International Day of Older Persons aims to:
Inform participants about the strategic objectives for the Decade of Healthy Ageing.
Raise awareness of the special health needs of older persons and of their contributions to their own health and to the functioning of the societies in which they live.
Increase awareness and appreciation of the role of the health care workforce in maintaining and improving the health of older persons, with special attention to the nursing profession
Present proposals for reducing the health disparities between older persons in the developed and developing countries, so as to “Leave no one behind”.
Increase understanding of the impact of COVID-19 on older persons and its impact on health care policy, planning, and attitudes.
Some key facts about Ageing and health from the World Health Organisation (2018) are startling, and remind us of the importance of changing attitudes towards older persons.
Between 2015 and 2050, the proportion of the world’s population over 60 years will nearly double from 12% to 22%.
By 2020, the number of people aged 60 years and older will outnumber children younger than 5 years.
In 2050, 80% of older people will be living in low- and middle-income countries.
The pace of population ageing is much faster than in the past.
All countries face major challenges to ensure that their health and social systems are ready to make the most of this demographic shift.
It is important we all think of ways to reduce the stigma of ageing, and the ageist attutudes about older persons. Whilst dementia is anot a normal part of ageing, our risk factor goes up with age. In this article, Positive attitudes about aging reduce risk of dementia in older adult, reporter Michael Greenwood shares som eimprtant research about how improving attitudes towards older persons, can reduce their risk of getting dementia.
By Michael Greenwood, published on 7 February 2018
Research has shown that older persons who have acquired positive beliefs about old age from their surrounding culture are less likely to develop dementia. This protective effect was found for all participants, as well as among those carrying a gene that puts them at higher risk of developing dementia, a new study led by the Yale School of Public Health has found.
Published today in the journal PLOS ONE, the study reports that older persons with positive age beliefs who carry one of the strongest risk factors for developing dementia — the ε4 variant of the APOE gene —were nearly 50% less likely to develop the disease than their peers who held negative age beliefs.
The study is the first to examine whether culture-based age beliefs influence the risk of developing dementia among older people, including those who carry the high-risk gene variant.
“We found that positive age beliefs can reduce the risk of one of the most established genetic risk factors of dementia,” said lead author Becca Levy, professor of public health and of psychology. “This makes a case for implementing a public health campaign against ageism, which is a source of negative age beliefs.”
Along with Professor Peter Mittler, Howard Gordon attended the recent Global Disability Summit in London, representing Kate Swaffer and DAI at the Civil Society Forum and Global Disability Summit in London on 23rd – 24thJuly 2018.
Whilst they DAI members wear many hats and advocate at many levels locally, nationally and internationally, Howard and Peter were attending the Summit as members of DAI. Amy Little from GADAA and the Alzheimer’s Society UK supported our members, also enabling DAI to have brochures and materials on the MarketStall she was hosting.
It was also pleasing to note that Nigel Hullah from the 3 Nations Dementia Working Group was also in attendance. Working collaboratively and together, we are so much stronger, especially wheh trying to represent 50 million people.
We have had a lot of activity since this Summit was held, which happened in Chicago, so the number of blogs in our draft folder is rapidly growing, and as we don’t want to overload you, we will only post weekly at this point.
For World Alzheimer’s Month, we intend to have a daily blog, so keep your eyes on your inbox from the 1st of September.
Howard wrote this summary for us:
In June, I learned of the Civil Society Forum and the Global Disability Summit that was to be held in London, organised by the International Disability Alliance and the UK and Kenyan Governments.
On further investigation, neither days appeared involve anyone living with Dementia as a speaker or delegate and I contacted the International Disability Alliance for clarification. After numerous emails from myself, Kate Swaffer and others we finally secured three places as delegates for the two days, one for the Alzheimer’s Society and two for DAI but sadly even though I tried up to the day before, no speaker.
DAI shared a stand with GADAA, the Stride Project and The Alzheimer’s Society and during the intervals we were there talking to delegates and making connections with DAI and the Stride Project.
The objectives of the summit were:
Raise global attention and focus on a neglected area
Bring in new voices and approaches to broaden engagement
Mobilise new global and national commitments on disability and
Showcase best practice and evidence from across the world
During the two days there were many opportunities to talk about rights, post-diagnosis support, services, funding and inclusion and although there was no opportunity to speak, I had taken copies of one of the DAI statements prepared by Kate Swaffer and some were placed on the stand and others I handed out as I spoke to delegates, at least DAI’s message was communicated.
One of the videos shown at the Summit
The main opportunities that may come from the two days are:
New DAI members in three African countries.
An invitation for DAI to be involved in the work of the UK Department for International Development and.
A meeting with Sir Philip Alston who is undertaking a UN special investigation into poverty and disabilities in the UK.
The Charter for Change, is full of promise but the devil is in the detail and whether Governments and organisations follow through with their commitments.
If the reaction of a member of the House of Lords to being told I have Dementia during our conversation is anything to go by, I have my doubts.
You can find a shortened version of the charter here:
The two days were different in that the forum was more about DPO’s and NGO’s whereas the Summit was not unexpectedly, more a political backslapping exercise.
My name is Howard Gordon from Sheffield in the UK, I am a person living with COPD, Alzheimer’s and Frontotemporal Dementia, here today as a member of, and representing Dementia Alliance International, and our Chair and CEO, Kate Swaffer. DAI is an organisation that represents the 50 million people currently living with dementia. I am one of them.
The WHO states there is a new diagnosis of dementia every 3 seconds, and whilst dementia is a chronic, progressive terminal condition, it is also the leading cause of death and disability in older persons.
Dementia Alliance International is the global voice of people with dementia, and Alzheimer’s Disease International is the global voice on dementia. Both are lead organisations of the Global Alzheimer’s & Dementia Action Alliance and the impact of dementia as a disability, and on women are two areas of our focus.
On the occasion of this Global Disability Summit, we ask that the you take notice that many national health systems exclude the collection of data on their citizens over age 60, others only report data to age 49, and less data is collected on women and girls than on men.
There is a need to disaggregate data by disability, sex and age to understand the state of women with disabilities, especially in LMIC’s and remote communities, and informing policies to ensure their effective inclusion and the full realization of their human rights.
Together, we urge continued attention to neurocognitive disorders in national data sets and refer the commission to the work of the Global Dementia Observatory project of the WHO which is developing a knowledge and practice exchange for Member States in support of the Global Dementia action plan as adopted by the WHO in May 2017 and the PAHO regional dementia action plan.
We also note that the disability due to many forms of dementia; especially Alzheimer’s disease often only diagnosed in later life, results in likely undercount of disability and access to rights redress.
Professor Peter Mittler stated in 2016; “Although people with dementia are indisputably included in the characterisation of disability in CRPD Article 1, governments are not including them in their implementation of the Convention. This could be considered as an example of systemic discrimination against millions of people.”
As a member of Dementia Alliance International representing the 50 million people currently living with dementia, and those being diagnosed every 3 seconds, of which the majority are living in lower and middle-income countries, we ask to be included; which also means support to be includes, both in terms of our cognitive and or other disabilities, and funding to enable attendance. Dementia ensures for the vast majority of people, an enforced form of poverty, due to the discrimination and stigma still experienced.
Dementia Alliance International would also like to remind delegates here today that people living with dementia have the same rights as persons with other disabilities, and we must move away from the medicalisation of dementia and instead view it through the lens of acquired disability.
Everyone with dementia is a rights bearer under the UN Convention on the Rights of Persons with Disabilities (CRPD). All State Parties to the CRPD are committed under international law to include persons with dementia in implementation of the convention.
Access to the CRPD is an essential right for all people living with dementia however there is limited evidence this right is being realised. Yet still many with dementia face abuses and violations of their basic rights. This can range from a lack of access to health services, to a culture of discrimination and even violence against those with the condition. People living with dementia everywhere must be supported to claim their rights as human beings with disabilities.
It is also imperative the impact on women and girls of dementia is considered.
Women are disproportionately affected by dementia. More women than men live with dementia, and women and girls provide the majority of unpaid care and face the greatest stigma.
Dementia is listed by the WHO as the fifth highest cause of death for women worldwide and is the leading cause of death and disability in older persons.
Women make up 2/3 of dementia care supporters and more than 70% in lower and middle-income countries. Unpaid women carers compared to male carers, are also more often unemployed due to their unpaid role; girls who are carers also miss out on education.
Everyone impacted by dementia receives little if any health care, including a lack of access to a diagnosis, nor appropriate support to live with dementia once diagnosed.
Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against as a result of their age, sex and condition (carer or diagnosed with dementia).
The stigma surrounding dementia exists universally, with women more likely to be stigmatised in this way. Extreme forms of discrimination can lead to women with the condition facing abuse, violence and even death.
Governments, international civil society and partners around the world must get behind this global challenge and unite for a world where no woman is left behind because of her dementia.
Gendered barriers to mobility and accessing justice lead to isolation and exclusion.
Understanding intersecting forms of gender- and disability-based violence, exploitation and abuse against women with disabilities including forced medical and psychiatric interventions.
Women with disabilities experience this type of abuse at disproportionately higher rates than others, and in unique forms owing to ingrained discrimination and stigmatization.
It is estimated that women with disabilities are 1.5 to 10 times more likely to be physically or sexually abused by a family member or caregiver than other women.
Women with disabilities are often excluded from national laws and policies and remain marginal to global discussions and agreements relevant to their empowerment. The global women’s agenda seldom takes into consideration the issues and concerns of women with disabilities.
In addition, women with disabilities are also neglected within the disability movement and the mainstream women’s movement. Stand-alone policies on women with disabilities remain limited; they are often excluded in policymaking and decision-making processes.
Finally, we ask governments, Member states, NGO’s, DPO’s and Civil Society to consider their responsibility to provide the financial support so often needed to enable people living with dementia to attend meetings and conferences on these and other matters affecting them, in line with
“Nothing about us, without us”,
We therefore ask we leave no one behind, including people with dementia.
The media need to refrain from promoting the perception that we are all suffer, I do not suffer now but I know I will suffer later in my journey, but I do not want to be referred to as a sufferer. If I had Cancer, the media would refer to me as a fighter, yet I am a fighter, I fight every day to live within the reducing limits of my Dementia. Just because I have a terminal disability, does not mean I should not be treated to equally with other persons in my community.
Dementia is no longer a silent disease, we have rights under the UN conventions and we no longer wish to be subjected to the philosophy of BPSD leading to Chemical Restraint, Sectioning and Involuntary Care.
I do not consider myself a sufferer, I am a fighter, fighting my co-morbidities and fighting for our rights
DAI also looks forward to the day when we no longer need to define people by disability, and we are all treated equally.
We therefore ask we leave no one behind through the full implementation of the CRPD, including people with dementia.
Sources for the statement:
The Dementia Alliance International, the World Health Organisanisation, the United Nations, the CRPD, the Global Alzheimer’s and Dementia Action Alliance, and the Alzheimer’s Society UK.
This week is yet another watershed moment for people with dementia and is another milestone achievement for Dementia Alliance International, who does represent people with dementia globally.
Without waiting for people without dementia or organisations who say they represent us (including to be invited to events like this), we ourselves ensured participation at this global United Nations event, and Professor Mary Radnofsky, through persistence and a passion that it is our absolute right to have a voice there, was given the opportunity to speak on behalf of DAI. Well done Mary!
Below is the short speech given by Mary at the UN yesterday, where she worked incredibly hard and persistently until she received this opportunity to be able to represent Dementia Alliance International and all people with dementia formally at this event, to all attendees.
“My name is Mary Radnofsky. I’m here to represent the Dementia Alliance International, DAI. I am American.
All the members of DAI are people with intellectual [cognitive] disabilities, specifically, dementia — including myself.
We ARE the voice of dementia; we speak for ourselves. Although I was diagnosed many years ago, I’ve just come out 2 months ago.
Systemic discrimination against people with intellectual disabilities in certain cultures, including America, isn’t necessarily intentional but it contributes to the problem of stigma, especially regarding dementia.
My question is: How can the CRPD help to eliminate culturally-systemic discrimination against people with disabilities, especially those of us who have felt we’ve had to hide our condition rather than deal with our society’s stigma?”
Here is the link to the audio and a photo of me speaking before the entire body at the UN Conference of States Parties on the final day of the meeting.
Thank you Mary, for representing us so well, and for braving the trains and traffic and the huge crowds of strangers in spite of living with dementia, for us all. We understand too well the impact and effect being there alone must be having on you physically and emotionally, and are truly indebted to you.
Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.(Margaret Mead)
Footnote: The term Intellectual disabilities was used, rather than cognitive disabilities, as this is the term the UN audience would understand. Our next job is to teach them (and others) that dementia does not cause intellectual disabilities in the same way as others living with intellectual disabilities, but is a disease of the brain, causing cognitive impairments, and whose symptoms cause people with dementia varying disabilities, some of them cognitive and some physical disabilities.
This week, DAI member, Professor Mary Radnofsky is representing us at the United Nations in New York City. Her commitment and hard work as a fairly new DAI member is appreciated and we thank her for her support and wish to be involved in not only things like our cafes and support groups, but with the advocacy required to make real and sustainable change.
Many of our members also work as very active advocates in their own areas which helps to create change, and there are far too many to list here today – another blog to feature them is currently in progress.
These are Mary’s notes from Day 1 at the United Nations:
I’m at the UN!!
And I’ve already asked a question in the forum, met many key people, and found my way around.
I arrived in New York 7am, took the “Airtrain” to Jamaica, then the E train to Lexington Ave, and walked to the registration center off-site; I presented my UN letter, got my credentials, and walked across the street on a bright sunny morning, straight in to the UN.
So here I am. This is the “Civil Society CRPD Forum.” It is a “Side event” of the “UN Council of States Parties.”
I’m in the first two sessions — the high-level political forum on the participation of persons with disabilities as stakeholders, and practical steps towards implementation. At the end of the panelists’ statements, I was able to introduce myself as a member of DAI, and de facto as a person with dementia, then to ask a question, “How can persons living with dementia specifically, participate in the decision making processes as well as in the implementation of these strategies, becoming members of committees and active participants?”
The panel had the choice to respond to whichever questions they chose. One response was that we join advocacy organizations, linked to larger networks, and work on larger projects together. No one else addressed the question.
The Ugandan, Med Ssengooba, spoke only of very traditional disabilities (blind, deaf, albinos). He said IDA has provided a toolkit. Now the Hi Level Forum provides room to reflect. The govt needs to think about those people other than the obvious groups.
I was encouraged to advise to our members and leaders that DAI join IDA.
There was next a focus on women being underrepresented in organizations, especially disabled women. A question came up about people with disabilities being more than 60% in rural areas.
Questions about caregivers were also raised, and ongoing discrimination against women with disabilities in Africa, people with communication difficulties, etc.
There are many different facets of the question of how to create a sustainable development agenda, by taking into account the rights of people with disabilities. They say they must take care to always ask themselves, who have they not included?
In many of the short speeches, panelists speak only generally about the importance and need to respect human rights for people with disabilities.
The Australian representative made a statement encouraging the panel to continue as they’ve been doing, and Tim Wainwright, the chair, acknowledged Australia as co-chair in the GLAD process.
Maria Soledad Cisternas Reyes, chair of the CRPD, spoke about Goal 33 of the CRPD, organizations’ participations. How have they committed to participating?
Mohammed Ali Loufty – said that in the last 20 years, there have been a lot of great steps in civil society to recognize the CRPD. Advocacy has improved, and inclusion programs have increased. One great achievement, the 2030 sustainable development goals. But the era of implementation is a new journey on its own. Much work for the next 15 years.
“There is a need for further inclusion of people with disabilities at all levels of international development. This is true. PWD remain the poorest of the poor…
The world is lacking many achievements forward in all spheres of development. The involvement of pwd is a must, and should be a must… There is a difference between the North and the South. Governments have done a lot, but there is still a lot to do… More disclosure of information…”
“Governments should be more humble; they must include pwd, because they are the experts on the conditions of their lives.”