We hope the time spent by DAI members and our volunteer last week in New York attending the 12th Session of the Conference Of State Parties (COSP12) on the Convention on the Rights of Persons with Disabilities (CRPD) will have far reaching benefits for all people with dementia, now and into the future.
It is imperative we all work towards ensuring that dementia is recognised by all as a condition causing acquired cognitive and other disabilities, and therefore one that people diagnosed with dementia must be provided with full and equal access to the CRPD and other Conventions, and to Universal Health Care.
We also wish to thank the United Nations and the World Health Organisation for supporting our event, and acknowledge our co sponsors, the Australian Government, the International Disability Alliance, Alzheimer’s Disease International, Human Rights Watch, the Global Rehabilitation Alliance and the World Hospice and Palliative Care Alliance.We also thank our two sponsors, Alzheimer’s Disease International and Boehringer Ingelheim.
We especially thank Ms Catalina Devandas Aguilar, the UN Special Rapporteur on the rights of persons with disabilities for her opening remarks, and all other speakers.
It was a rich discussion on dementia as a disability, on people with dementia as rights bearers, and of the rights of all, including people with dementia to rehabilitation and other services, and to full and equal access to the CRPD
The overarching theme was social inclusion and health, two determinants of well-being, both of which are being systematically denied to people with dementia all around the world. Dementia had never been represented formally in a Side Event ever before at the COSP, hence why DAI felt it was so important.
Our disabilities may be more invisible than many others, but we are still, even in 2019, being stigmatised and discriminated against on a daily basis, and we hope this event will be the start of change for the more than 50 million people currently living with dementia, and every person being newly diagnosed every 3.2 seconds.
As an organisation DAI intends to continue to work towards others joining our campaign that dementia is a condition causing acquired cognitive and other disabilities, and for full and equal access to the CRPD and other Conventions, so that no one is left behind, including people with dementia. Rehabilitation, and all other health and disability services and support are essential for maintaining independence and dignity, for longer, and whilst dementia is a terminal condition, we should not all be ‘dying at diagnosis’.
DAI Board member Christine Thelker was listed to make a Civil Society Statement on behalf of Dementia Alliance International and our Strategic Partners Alzheimer’s Disease International on Wednesday of this week during Round Table 2 of the 12thSession of the Conference Of State Parties on the Convention on the Rights of Persons with Disabilities, also the session being co-chaired by Kate Swaffer.
Round Table 2: Social Inclusion and the Right to the Highest Attainable Standard of Health
Read the full stament here which was prepared ij response to the theme of the session. Unfortunately the session was cut from 3 down to 2 hours, so she didn’t get to make the statement on the day. However, there was an opportunity to make a shorter verions of it at a Side Event yesterday, which we will share soon, including with a video of her speaking. The recording of our Side Event, Dementia: the leading cause of disability is also available online now.
Prepared Civil Society Statement:
Distinguished Chairs, speakers and delegates
Thank you for the opportunity to make this statement on behalf of Dementia Alliance International, the global voice of 50 million people living with dementia and Alzheimer’s Disease International today, who are our strategic partners.
As partnering international organisations, we collaboratively advocate for the rights of all persons with dementia and their families.
The 2030 Agenda sets out an ambitious goal vision to reach and empower those left behind.
As one of the 50 million people with dementia, I am being left behind.
Furthermore, women and girls are disproportionately affected by dementia. More women than men live with the condition, they provide the majority of care support and they also face the greatest stigma.
Women also make up 2/3 of dementia care supporters and more than 70% in lower and middle income countries. 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.
I am here today to ask you to help me claim my rights as a person with disabilities to empowerment and social inclusion and the highest standard of universal health care.
Articles 19, 25 and 26 of the CRPD respectively address my rights to live independently in my own home in the community, without fear of being institutionalised and segregated, due to health and disability services and support not being in place to support me to live independently.
As a person with acquired cognitive disabilities that may cause communication, personality or other changes to my capacity to function without support, I demand my right to non-pharmacological support to live with a high quality of life, and am not chemically or physically restrained.
The lack of education and awareness of dementia of health care professionals and service providers, compromises my right and ability to access adequate services. Article 25 clearly states I must be able to access health care. Currently, people with dementia are being denied this.
Secondary to my dementia, as a person with younger onset dementia, I am being further denied support to live well in my community, support to maintain independence and access to health care.
It is therefore imperative we ensure health care providers are adequately educated in dementia, and those of us living with it are supported as people with cognitive and other disabilities to live a high quality of life in our community.
This is our fundamental right.
Governments, international civil society and partners around the world must get behind this global challenge and unite for a world where no one living with dementia is left behind.
Thank you for the opportunity to make this statement on behalf of Dementia Alliance International, a registered charity providing advocacy and support for people with dementia. We are also celebrating its 5th birthday.
Started in 2014 by 8 people with dementia including me, it has become the global voice of dementia.
We started with a dream, specifically for full and equal inclusion, and to be respected and valued as members of society. We also advocate for equal access to universal health care.
This has become our dream for the more than 50 million people with dementia, and each person newly diagnosed every 3 seconds.
That is also why DAI has organised a Side Event, taking place on Thursday morning.
No one and no organisation has ever represented people with dementia in this way, at this conference before.
Being diagnosed myself with dementia aged 49 taught me what the late Dr Martin Luther King Jnr.called ‘that sense of otherness’.
I had not been stigmatised or discriminated against, except as a woman.
I had not come from a deeply marginalised group.
However as one of the 50 million people currently living with dementia who’s life was thrown in the bin at the time of my diagnosis, and still experiencing stigmas and discrimination.
Dementia is a significant global issue; it is the 7th cause of death globally, the 5th cause of death in America, and the 2nd cause of death in Australia.
However, after a diagnosis, we do not receive access to universal health health care.
We do not receive post diagnosis rehabilitation or most other allied health services to support our independence or social inclusion.
We are segregated from others when we require assisted living.
We are institutionalised.
We are restrained physically and chemically, with no consideration of our rights.
In society, clinical practice is only provided, when supported by strong evidence based research.
However, the use of the concept Behavioural and Psychological Symptoms of Dementia (BPSD) was implemented, with no evidence based research was implemented.
This has lead to further chemical and physical restraint.
Secure dementia units, also a breach of many of our rights, including our right to freedom, are evolving into dementia villages, again with no evidence based research for their value.
Disease or disability specific villages are little different to ghettoisation of groups of people.
They are not a solution to those people with dementia who do need assisted living.
We are daily and systemically being denied our human rights.
Unfortunately, people with dementia who decide to manage their symptoms as disabilities and proactively seek disability support, are also often demonised for daring to live positively.
Approximately 5 years ago the Dementia Envoy for the World Dementia Council Dr Gillings said people with dementia may need to take to the streets and march on the steps of parliaments.
This is the beginning of that march, so that people with dementia are not left behind in the 2030 Agenda.
Chair, CEO & co-founder
Dementia Alliance International
Next week, the 12th session of the Conference of States Parties (COSP) to the Convention on the Rights of Persons with Disabilities takes place from Tuesday 11 to Thursday 13 June 2019 at UN Headquarters in New York. On Monday 10 June, a Civil Society CRPD Forum will be held to complement the Conference.
DAI will be attending both events, aiming to represent the 50 million people currently living with dementia, and each person who is newly diagnosed every 3.2 seconds. It is a hostorical moment in the advocacy of, by and for people with dementia. That this DAI Side Event was accepted is a first, and highlighting. Dementia as a disability has never been represented at the CoSP conference ever before.
The Themes and Sub-Themes
The overarching theme of the Conference is “Ensuring the inclusion of persons with disabilities in a changing world through the implementation of the CRPD”. This is highly relevant to people with dementia and our families.
Three round tables will address the following themes:
Technology, digitalization and ICTs for the empowerment and inclusion of persons with disabilities
Social inclusion and the right of the highest attainable standard of health
Inclusion of persons with disabilities in society through participation in cultural life, recreation, leisure and sports
Highlights for the week:
The Civil Society Forum on Mon 10 June will address what is the current state of play; capacity building; and protection of the rights of children with disabilities.
Civil Society representatives speaking in all official sessions of the CoSP and co-moderating all three round-tables from Tues 11 to Thurs 13th June.
On Wednesday 12, Matters related to the implementation of the Convention (item 5 (b) (ii): Round Table 2. Social inclusion and the right to the highest attainable standard of health – will be co-chaired by H.E. Ambassador Katalin Annamária Bogyay of Hungary, Vice President of the Conference and Ms. Kate Swaffer Civil Society representative from Dementia Alliance International, also Chair and CEO of DAI.
The Chair of the International Disability Alliance will speak at the opening of the CoSP, as a representative of the Civil Society Coordination Mechanism, and alongside UN Secretary-General
100 side-events are being organised, covering a broad range of topics
IDA and its members will also be co-sponsoring and/or speaking at over 20 side-events, including DAI’s.
DAI is hosting its own and first Side Event on Dementia as the leading cause of disability on June 13, with live web cast, International Sign and Closed Captioning services provided, to ensure accessibility to and for as many people as possible
DAI will be not only be celebrating our 5th Birthday at this exciting event, but also ensuring dementia as a disability definitively joins the global disability stage. This event is being held on Thursday June 13, 9.45-11.00 am in Conference Room 11.
Note: We will be posting a blog with the times and link to the live webcast as soon as the link is available to share.
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.
On May 14-15, 2018, a great number of DAI members, and others with dementia attended the National Dementia Conference, hosted by the Canadian Government. I was privileged to be invited and to give a short speech, and was honoured to be on the same program as Mary-Beth Wighton and Phyllis Fehr. Their speeches will follow in another blog very soon.
One of the highlights for me was meeting so many of my ‘online’ friends in person, and many of us said goodbye with joy, and tears.
The photo above is of the conference delegates living with dementia, and the government officials and staff who organised it, including the Canadian Minister of Health, Ginette Petitpas Taylor, MP, who attended on both days.
She is also attending the World health Assembly in Geneva this week (we met in the corridors of the UN), so who knows, I may have an update or even a ‘selfie’ to post here!!!
We are extremely proud to announce here that Mary Beth Wighton, one of the founders of the Ontario Dementia Advocacy Group (ODAG), and current Chair was selected, along with Jim Mann, to be full members of the Ministerial Dementia Advisory Group.
Both are members of DAI as well. We have no doubt they will influence the national plan and if necessary, forcefully ensure it is embedded with rights for all. We congratulate them both, and all people living with dementia in Canada for their passion and drive.
Clearly, the most important elements of any National or Local Dementia Strategy or Plan are our basic human rights.
Access to a timely diagnosis
Access to care and support that promotes independence
A new post diagnositic care pathway or ‘model of care’ that is a blend of health care and disAbility support
Rehabilitation assessment and support, at the time of diagnosis, for all people with dementia, including speech pathology
Disability assessment and support at the time of diagnosis
Access to education and care for our families and care partners
Education for everyone working in or impacted by dementia
Moving away from any form of chemical or physical restraint
National Risk reduction strategies
For me, this includes full support for all people with dementia to attend (any event or conference) financially, to ensure full and equal inclusion and participation, as well as full support for our cognitive and disabilities. This is a legal right, not just a human right.
The following are my speech notes and as my ‘brief’ was rather limiting, I decided to broaden the elements of my speech:
Slide 1: People with deMEntia in Research Ethical Considerations
Thank you for the invitation to join this conference, and the panel today.
Slide 2: Global Overview of deMEntia
50 million people living with dementia
1 new diagnosis every 3 seconds
The cost of dementia is estimated to be 818 billion dollars
The majority of care is provided by unpaid family care partners
Dementia is the 7thleading cause of death globally
In Australia, it is now the leading cause of death in women, and the 2ndleading cause of death of all diseases
Dementia disproportionately effects women, in terms of the numbers diagnosed, and the number of unpaid family care partners
Stigma, discrimination, the deeply entrenched myths about people with dementia, and the
Overview of DAI, which was launched on January 1, 2014 by 8 people with dementia, including one from Canada:
Membership now spans 47 countries
The services and support available to members and the broader dementia community is provided free for members, and on an annual budget of less than $50,000 USD – for the first 18 months, DAI was completely self funded
We still self fund much of our human rights and global work, including supporting countries with their national dementia plans, such as my trip to Canada
Global impact on the WHO Global Dementia Action Plan, human rights and dementia being seen and treated as a disability – before we started advocating, there was little more than rhetoric about rights
DAI provides significant information and support to members within their own country Dementia Advisory Groups, such as the Ontario Dementia Advisory Group
Our members now need Alzheimer’s Associations and other organisations to partner with us, as Alzheimer’s Disease International has, to complement the services and support they provide
Slide 3: Living with deMEntia
When I was diagnosed in 2008 at the age of 49, the advice I was given was to go home, give up work, give up study, get my end of life affairs in order, and to get acquainted with aged care
The challenges of a diagnosis of deMEntia in 2018 are much the same! Most new members of DAI and others I meet with dementia around the world tell me nothing has changed. Both Mary-Beth and Phyllis have told us this was true for them as well.
Human rights and deMEntia
It is a breach of our most basic human rights not to be supported to live as positively as possible with dementia
It is no different our care partners and families receive little or no support
It is a breach of our human rights not to be provided with post diagnostic support that includes rehabilitation, including speech pathology when we are first diagnosed for speech and language impairments, not at the end of life when we can’t swallow and are almost ready to die
The WHO states dementia is the leading cause of death and disability in older people – yet so far, service providers and health care professionals do not actively support our disabilities with strategies to maintain independence for as long as possible
As a mature age student at a university when diagnosed, I was proactively supported to keep living my life, with proactive disability support, as my children would have been if they were living with any type of disability
It is imperative there is nothing about us, without us; including in research
I trademarked what happened to me 10 years ago as Prescribed Disengagement®. Unfortunately, I have hundreds of examples of anecdotal evidence this is still happening to the majority of people after diagnosis today.
It is a human rights issue that must be addressed in all national dementia plans and strategies, in the provision of health care, and in policies and services. I was the first person with dementia to speak as an invited keynote speaker at the WHO, which is a specialised agency of the United Nations in March 2015. Since then, much has happened, including the unanimous adoption of the WHO Global Dementia Action Plan: A Public Health response to dementia 2017-2015. The only truly accountable section of this Global Dementia Action Plan, adopted at the WHA in May 2017 are the cross cutting principles. I personally believe Taiwan has led the way; Canada could be next, if you get it right now.
Redefining responses to deMEntia
Janssen Pharmaceutical developed the term BPSD, and funded the first guidelines; they invested a lot of time and money promoting this through clinicians and researchers
This paradigm has likely caused worse care, ensure we do not provide person centred care, and resulted in chemical and restraints being used to manage the responses to dementia or responses to poor care that people with dementia express
Slide 4: Human Rights, Research & deMEntia
Ethical considerations of involving people with deMEntia in research clearly include causing no harm to research participants. Historically, research was done about us, through our care partners, unless it was pure scientific research for a cure or a disease-modifying drug. It is still very difficult to get ethics approvals when including people with dementia I research, which I know from personal experience as a ‘young’ researcher.
For example, in an Annual Report on stigma published in 2012, only 7% of people with dementia were included in the research participant cohort – the rest were families, hence this report does not report on the stigma we feel, but what other believe we experience, which is significantly biased by their own suffering.
Managing the gate-keepers continues t be a challenge, as the paternalistic views about us, and the subconscious beliefs and attitudes about us not having capacity or sufficient cognitive ability to be involved in society, let alone in research, is endemic. Even today, most decisions made for or about us, are deeply influenced by people without dementia. In my role as the Chair and CEO of Dementia Alliance International, I can tell yo we receive on average, 5 requests per week from researchers to engage with our members, as they cannot get either the family members to agree to involve us, or the advocacy organisations to share the opportunities for participatory research.
The wellbeing of research participants with deMEntia should be important to everyone, and especially if a trial ends or fails, no care is provided post trial for the research participants. DAI members report that when a trial is either stopped, or comes to an end, they are ‘dropped like hot pancakes’. This is unethical, and could be seen as a human rights issue as well.
People become involved in trials, not only in the hope of finding a cure for themselves, but for future generations. Research for a cure, but even more so for better care, and for risk reduction or slowing the progression of dementia are of great interest to most people currently diagnosed. We need to be supported emotional, physically and financially to be involved in research, and we need research opportunities made publicly available to us. We also need pharmaceutical companies and the media to stop selling false hope!
Involving people with deMEntia in National Dementia Plans and Strategies
Finally, in everything you do, I implore you to SEE THE PERSON, NOT ONLY THE DEMENTIA. We are human beings, with a condition causing changing capacity and functional disabilities.
Given the right support, and equal opportunities to all other persons with an acquired disability, we have a lot to contribute, not only to research, but also to society as a whole.
Last week, invited as the Chair and CEO of DAI, and in my role as the Ambassador for Alzheimer’s Disease International in South East Asia , I visited Taipai. The invitation to visit and support Taiwan was from LiYu Tang, who is the Secretary General of the Taiwan Alzheimer’s Disease Association (TADA) 湯麗玉 台灣失智症協會秘書長. This image was taken on the last day, at the end of the public meeting.
The staff of TADA, and the many others involved in planning this trip were incredibly generous and hospitable hosts, and looked after my BUB and I well, and especially ensured we ate well. The other very important part of this trip was the services of a translator, and on the first meeting, a university professor was able to translate for our meeting which was incredibly helpful, as instead of meeting with only one or two people, about 20 of the staff were also invited.
On the next two days, a beautiful young woman called Victoria Chang was engaged to translate for my sessions, and in one part of the public meeting, I completely forgot I needed her, and spoke for so long it was almost impossible for her to follow! It was incredible to have her support, and her ability to follow me, when I was unable to follow my own notes or slides, made it even more amazing.
The goal for my visit was not specifically to raise awareness of dementia, but partly to empower other people diagnosed with dementia to become advocates, and to work with Taiwan to inform government, policy and services. In the process of my many meetings, the seeds were sewn for the Taiwan Dementia Working Group.
People with dementia who attended the session at the Taipei Family of Wisdom house, a centre for people with dementia to attend and be involved in many different activities, spoke out for the first time publicly of their own experiences after the session there. The next day, in my final public meeting, a gentleman who had travelled from afar, also spoke up, and has also been invited to become a member of the Taiwan Dementia Working Group. It is a very exciting time for people with dementia in Taiwan.
My other meetings were with a number of government or city officials, and the President of TADA, and the aim was to not only give them insight of dementia from the inside out, but to discuss ways in which they could change the experience of dementia for those diagnosed, and on ways to collaborate with each other towards a dementia friendly and dementia accessible and enabling Taiwan.
My schedule was incredibly busy…
Day 1: Depart Adelaide 2pm on April 19, and arrive in Taipei on April 20 at 11:30am (sleep – only on the flight as somehow we mixed up the schedule, and arrived a day later than expected!), and check into the YMCA hotel in Taipei.
Meeting 12.30-1.30pm with Shwu-Feng Tsay Director-General, Department of Nursing and Health Care, Ministry of Health and Welfare, and about 20 of their staff.
Day 2: Pick up at 8am
Meeting 1: 9-10am – Chi-Hung Lin, Commissioner, Department of Health, New Taipei City Government, and a number of his staff.
Meeting 2: 11.30am-12.30pm – Li-Min Hsu, Commissioner, Department of Social Welfare, Taipei City Government, and a number of staff
Meeting 3: 2-4pm – held at the Taipei Family of Wisdom, a relaxed afternoon tea and presentation to family, staff and people living with dementia. I was welcomed and thanked by Li-Yu Tang, the Secretary General of the Taiwan Alzheimer’s Disease Association. My translator Victoria Change learned here how I can no longer follow my own notes, so it was excellent preparation for her for the public meeting!
Day 3: Pick up at 8.50am held at The Home of Christ Taipei
Press conference, 9.30-10.00am
Welcome and introduction by LiYu Tang
Presentation by Te-Jen Lai, President of TADA
Presentation by Kate Swaffer: Human rights of people with dementia
Presentation by Yu-Chin Wu, Legislator
Presentation by Hui-Jiuan Chien, Director General, Department of Social and Family Affairs Administration, Ministry of Health and Welfare
Speech to the public, 10-11:30am with Facebook live broadcasting
Presentation by Kate Swaffer: Living Beyond Dementia
Question from the audience, Kate responds (with the support of Victoria, the incredible translator!)
Presentation by Zi-Long Ku, the Commissioner of Department of Social Welfare of Taoyuan City Government
Closing by Te-Jen Lai, President of TADA
It was a very positive, but also very tiring few days, and I was honoured and deeply humbled by these wonderful people, in particular this living with dementia who found the courage to speak out publicly for the first time. Thank you Taiwan.
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.
We are starting off this week, with last weeks blog! I was unable to find time to write or post one, in part as I am now in Budapest preparing for the 31st Alzheimer’s Disease International conference later this week. After a weekend off playing tourist, something rarely done these days, I have to focus on my personal studies. On top of that, I decided to dedicate this week to keeping our members up to date with what is happening here at the conference, as a few members are on their way to Budapest, but many more are not able to be here.
One member in particular, who had his Abstract accepted, is not well enough to be here, and I want to say to you Mick Carmody, we will miss you, and I personally am experiencing something similar to what is called ‘survivor guilt’ as I feel guilty even being here without you. We all love you, and hope you improve soon. <3 <3 <3
So, to get the week started, Professor Peter Mittler is representing us in Geneva tomorrow, and made this submission on our behalf on our human rights and use of the CRPD. Thank you Peter.
POSITION PAPER: UN GENERAL DAY OF DISCUSSION ON CRPD ARTICLE 19
THE RIGHT OF PERSONS LIVING WITH DEMENTIA TO BE SUPPORTED TO LIVE INDEPENDENTLY IN THE COMMUNITY
By Professor Peter Mittler, DAI Member and Human Rights Adviser
This submission invites the UN CRPD Committee to take steps to ensure that persons living with dementia are fully included in the implementation of the Convention and the UN 2016-2030 Sustainable Development Goals in order to enable them to fulfil their stated aim “to be helped to live as independently as possible in the community[ii].
This is a world-wide priority for 47.5 million people now living with dementia and a policy imperative for those who will be diagnosed in the decades to come, especially in Low and Middle Income Countries.
Dementia Alliance International was founded in 2014 by people with a diagnosis of dementia across the world and now has 1500 members. It provides a unified voice in claiming their fundamental human right to supports and services to enable them to live well in their community for as long as possible on the same basis as their fellow-citizens.
Dementia Alliance International is the voice of people with dementia. It works closely but autonomously with Alzheimer’s Disease International[iii]– the global voice for people with dementia.
Our joint aims are to
Use the CRPD to secure the recognition of the human rights of persons with dementia- internationally, regionally, nationally and locally
Ensure that CRPD implementation by Member States includes people with dementia
New developments in policy and practice for people with dementia are based on CRPD Principles and Articles
Build awareness, commitment and capacity among self-advocates and organisations for persons with dementia to use the CRPD as a tool for change
Encourage and inform submissions to the CRPD Committee to secure the inclusion of the rights of persons with dementia in its List of Issues and Concluding Observations and in its relationships with other UN and international agencies in the implementation of the UN 2016-2030 Sustainable Development Goals.
Until recently, neither persons with dementia nor national Alzheimer’s Societies have used their right of access to CRPD to which they are legally entitled in the characterisation of disability in Article 1.
“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”
It is against this background that DAI Chair and CEO Ms Kate Swaffer included ‘Access to CRPD’ as one of its demands at the WHO First Ministerial Conference on Dementia in March 2015. In addition, a strong, human-rights based resolution submitted by Alzheimer’s Disease International on behalf of 38 national Alzheimer’s Associations was reflected in the first of the General Principles of the Call for Action by WHO Director Dr Margaret Wang[iv].
Although 163 Member States and the European Union have ratified the Convention, there is no evidence that persons with dementia are being included in its implementation at national level. This reflects a pervasive assumption that dementia is the sole responsibility of Health ministries, rather than a joint responsibility across all Departments of State, including Housing, Social Care and Protection, Transport and Justice to enable persons with dementia to have access to the whole range of supports, services and amenities available to their fellow-citizens (Article 19c).
OBSTACLES TO CONTINUED PARTICIPATION IN THE COMMUNITY
Persons with dementia have ‘lived independently and been included in the community’ all their lives but encounter deep-rooted and systemic attitudinal and societal obstacles to continue to do so following diagnosis.
DISENGAGEMENT BY DIAGNOSIS
Exclusion from the community frequently begins with the first disclosure of a diagnosis of dementia. Accounts by persons with dementia in books[v], DAI weekly support groups and the social media include numerous examples of the ‘good, the bad and the ugly’ in ways in which the diagnosis is communicated by clinicians. A book by the late Richard Taylor[vi], a former clinical psychologist, includes a classic chapter based on his personal as well as professional experience contrasting good with bad practice in ways of communicating a diagnosis of dementia.
Kate Swaffer[vii] uses the term ‘Prescribed Disengagement® to characterise the advice that she received to “give up work, give up study, go home and live for the time you’ve got left.” Her husband was told he would soon have to give up work to care for her.
Legal capacity and fitness to drive are immediately threatened by a diagnosis of dementia, rather than evaluated by independent assessment of functioning. This can be particularly traumatic for people with Younger Onset Dementia in mid-career and with responsibilities for young children and elderly parents.
Many people with dementia have described the loneliness and social isolation which they experience when friends and even family members stop visiting and neighbours cross the street to avoid meeting them. Their isolation is increased by fear of failure and humiliation in going out. Loss of self-identity and self-esteem can occur when household tasks and responsibilities are taken over by the care partner, sometimes on the advice of a professional.
Dementia has now replaced cancer as the illness most feared by the general public and is the reason why many people hesitate to seek help if they are worried about their memory or cognitive functioning. The stigma surrounding dementia is fuelled not only by the media but by politicians and clinicians who talk about time bombs and tsunamis and commit to a ‘world without dementia’ within a generation.
In the meantime, stigma is reflected in the conclusion of an OECD[viii] study that “dementia receives the worst care in the developed world” and a WHO[ix] statement that the disability arising from dementia is higher than in almost all other conditions, with the exception of spinal cord injury and terminal cancer.
PREMATURE RESIDENTIAL CARE (Article 19a)
Most people with dementia in High Income Countries continue to live with a care partner, with supports ranging from zero to daily visits from a support worker, funded by themselves or a publicly-funded agency. The 30 per cent of people with dementia who live alone miss out on even more support due to their single status and inability to register a family carer. In many Low and Middle Income Countries the only alternative is a distant institution.
A person admitted to hospital for reasons not directly connected to their dementia is likely to stay in hospital for much longer than a person without dementia, due as much to the poor care which they receive as to their partner being unable to care for them at home.
A recent UK report[x] based on information collected under the Freedom of Information Act reports that
People with dementia stay five to seven times longer in the worst performing hospitals than other people over the age of 65
52-71 per cent of people over 65 who had a fall were people with dementia
Thousands of people with dementia are being discharged between 11pm and 6am each year.
The risk of transfer to residential could be reduced by contingency planning with a key worker familiar with the person’s home circumstances. Once in residential care, isolation from the community is compounded by the possibility that some family members and friends will stop visiting, especially if the person with dementia does not appear to recognise them or is uncomfortable in their presence.
THE CARE COUPLE
Many professionals and policy makers generalise about ‘carers’ as if they were a homogeneous group, despite evidence of their individuality in the social media and in the rich variety of their writing[xi]. Because care partners are the main source of support for the person with dementia to live at home and to remain a member of the community, they too have the right to whatever support is needed to help them to do so.
25 per cent of persons with dementia and 50 per cent of care partners are clinically depressed. Richard Taylor’s account of crying for weeks following diagnosis reflects a need for crisis counseling both for him and his wife. His discussion of the impact of the initial impact of his diagnosis and difficulties on his relationship to his wife suggests that both might have been helped by couple counseling.
Poor support for people newly diagnosed with dementia is in strong contrast to rehabilitation programmes tailored to the specific needs of people who sustain severe brain damage as a result of a stroke or traffic accident. Kate Swaffer contrasts the current medical model of care with a support pathway based on CRPD[xii]. A service along these lines in provided in the State of Queensland, Australia[xiii].
The concept of ‘post-diagnostic support’ needs to be reconceptualised as a rehabilitation pathway which begins at the time of diagnosis with the offer of a follow-up visit to the hospital or memory clinic where the diagnosis has been given and provides opportunities to ask questions and discuss ways in which support can be given.
From this point, a qualified key worker needs to be appointed to maintain contact with the person with dementia and family members to discuss needs and priorities and provide links to necessary services and supports from all relevant services and community supports.
A rehabilitation pathway should provide access to a wide range of specialists. These include:
Occupational therapists to discuss possible adaptations to the home and domestic appliances, television sets and personal computers
Physiotherapists to maintain mobility and strength
Speech and language therapists to promote language and communication
Clinical psychologists to advise on adjustment to diagnosis, improving and maintaining cognitive functioning, maintaining independence and quality of life[xiv]
Social workers to consider family issues and provide access to community resources.
PLANNING FOR THE FUTURE
INCLUSION IN UN 2016-2030 SUSTAINABLE DEVELOPMENT GOALS[xv]
The UN 2016-2030 Sustainable Development Goals were launched with a commitment to Leave No One Behind. As a consequence of sustained advocacy, persons with disabilities are now clearly included in the 17 SDGs and 169 implementation indicators. Although the needs of older persons are recognised, persons with dementia are in grave risk of being overlooked.
Persons with dementia in Low and Middle Income Countries should be able to benefit from the long established WHO Community-Based Rehabilitation Programme which aims to provide a home-based, first line of support to persons with disabilities and their families from local health and community workers, as well as persons with disabilities and family members.
The most recent revision of the CBR Training Manuals[xvi] was co-written with Disabled Persons’ Organisations and draws on CRPD Principles and Articles to inform policy and practice. The Convention has also been used to underpin the WHO 2014-2021 Disability Action Plan[xvii]but it is not clear whether persons with dementia will benefit from either of these initiatives.
REGIONAL AND NATIONAL DEMENTIA STRATEGIES
As a result of G8 and G7 leadership and the WHO Global Dementia Strategy, Dementia Strategies have been launched by the European Commission, the Pan-American Health Authority and several Member States. Although nearly all participating governments have ratified the Convention, we can find no evidence of it being used to underpin policies.
Dementia Alliance International requests the CRPD Committee to take steps to raise awareness of the rights of persons with dementia among Member States and at all levels of the United Nations to ensure that they are included in its monitoring and implementation.
ARTICLE 19: GENERAL ISSUES FROM A DEMENTIA PERSPECTIVE
Dementia is one of several health conditions that suggest the need for greater consideration of the impact of impairments on day to day functioning (e.g. epilepsy, Parkinson’s’ Disease, Motor Neurone Disease). Although dementia is a progressive disorder, the rate of deterioration over a period of years is highly variable and levels of functioning also vary from day to day in ways that cannot be captured by routine assessments which influence decisions on legal capacity. There is often a mismatch between performance on tests and everyday life.
Other commentators have pointed out that Living Independently does not mean Living Alone. Article 19 is one of several where the focus is on the individual without sufficient regard to those with whom they share their lives – in particular the person who will lose their identity as a life partner and be automatically designated as ‘the carer’ at the time of diagnosis. Service planners, providers and supporters need to have regard to the dynamics of the ‘care couple and to the distinctive needs of each.
Early versions of the social model of disability conceptualise the environment in terms of obstacles that need to be overcome (e.g “parents are our enemies”) rather than the opportunities it can or could provide to support the person to live independently and be included in the community.
Author: DAI Human Rights Advisor, Professor Peter Mittler, April 2016
Editor: Kate Swaffer, Chair, CEO & Co-founder, DAI
[v] Swaffer, K. (2016) What the Hell Happened to My Brain? London: Jessica Kingsley Publishers; Taylor, R (2009) Alzheimer’s From the Inside Out. Baltimore, Md: Health Professions Press; Whitman, L.(ed.) (2016) People with Dementia Speak Out. London: JKP; Rohra, H. (forthcoming) Coming Out of the Shadows: Why I Advocate for People with Dementia. London: JKP.
[vi] Taylor, R. op.cit. If I were an M. and not a Ph.D.
[vii] Swaffer, K. (2015) ‘Dementia and Prescribed Disengagement’. Dementia, 14(3), 3-6.