The following blog is a copy of an excellent speech given by DAI member Emeritus Professor Peter Mittler at AAIC conference in Toronto last week, for the Axovant symposium “The debate continues: Unraveling the science of Alzheimer’d Disease”.
Our sincere thanks to you Peter, for representing us so well once again.
LIVING WELL WITH DEMENTIA: A FUNDAMENTAL HUMAN RIGHT
“I have been invited to this conference as Human Rights Adviser to Dementia Alliance International. I am here because “dementia receives the worst care in the developed world”. That is the conclusion of the Organisation for Economic Cooperation and Development, based on an exhaustive study of the world’s 38 richest countries.
It is also a human rights issue because it is not about dementia but about people living with dementia.
While we wait for dementia researchers to find a cure, the 47 million people now living with dementia and the hundreds of millions predicted by the end of the century could live much better with dementia if they were supported to do so in their own homes and communities. In the meantime, the medical profession is well placed to use its prestige to influence public opinion, politicians and the media by avoiding the use of degrading language involving time-bombs and tidal waves, as well as commitments to ‘end dementia’ by a given year.
The words Human Rights and Dementia are rarely found in the same sentence but history was made on April 21st 2016 when the Council of Alzheimers Disease International committed its 83 national Alzheimer Associations to a human rights-based policy which includes full access to the United Nations Convention on the Rights of Persons with Disabilities.
Dementia Alliance International is the sole international self-advocacy organisation OF people with dementia. We were founded in 2014, and now have around 2000 members across the world, all of whom have a diagnosis of dementia. We work in close but autonomous partnership with Alzheimers Disease International which works FOR people with dementia.
I wonder how many of you have heard of us because nearly half our members are in North America. Whether you have or not, we are grateful to Axovant for making our human rights booklet available at this conference. It tells you about our priorities, weekly support groups in different time zones, webinars from world leaders in research and policy, the books we’ve written, our daily blogs in the social media and on our closed Facebook page, as well as developments in our campaign to claim our human rights.
I was diagnosed with early very mild Alzheimers Disease ten years ago. Some doctors tell me that the fact that I am still alive and functioning is due to the 3650 Aricepts I have taken over the last ten years. Common sense as well as research tell me that it can’t be that simple.
Most of the people I work with in DAI say that advocacy has given them a new purpose in life. Dr Jennifer Bute from the UK calls her blog: A Glorious Opportunity. Some of us are fortunate enough to be able to say that we live well with dementia and even aim to live beyond dementia but we know that this is not the experience of the majority. So when we object to being described as sufferers, it is because we suffer most from the way we are treated by society and from the poor quality of services and supports available to us throughout the world.
Many national reports give specific examples not only of poor services but of systemic human rights abuses. A recent Freedom of Information enquiry conducted for the UK Alzheimer’s Society revealed that people with dementia stay five to seven times longer in general hospitals than others over the age of 65 and that thousands are being discharged between 11pm and 6am each year. While they are there, their basic human right to “respect for human dignity and individual autonomy” is systemically disregarded.
HOLDING GOVERNMENTS TO ACCOUNT
So how can we hold our own governments to account for providing the worst care in the developed world?
First and foremost, governments need to ask people with dementia what matters to them and what changes they want to see. That question also needs to be asked in the communities in which they live.
It’s not enough to invite us to conferences to tell our stories or even join committees because we can be heard but ignored or disqualified by diagnosis. I have worked in various capacities with people with intellectual disabilities; like them, I’m wary of tokenism.
It was not tokenism when Robert Martin, a New Zealander with an intellectual disability who spent many years in an institution, was last month elected to the United Nations Disability Committee, 17 of whose 18 members are people with disabilities. How long will it take for a person with dementia to be proposed by their government to become a member?
DAI asks the countries represented at this Conference to enable their fellow citizens with a diagnosis of dementia not merely to be consulted when decisions affecting their health and well-being are being taken but to work in full partnership with them as the main stakeholders and intended beneficiaries. That imperative is fundamental to the UN Convention on the Rights of Persons with Disabilities. People with dementia are experts by experience -and even have the T shirt.
Right from the start, DAI adopted the commitment of the global disability movement to the principle of Nothing About Us Without Us –the title of a book written by Christine Bradley, one of DAI’s co-founders who worked in the office of the Australian Prime Minister as science adviser. I know from my own experience as adviser in intellectual disability to the UK government and to UN agencies that having good legislation means nothing if it does not reach the people it is designed to benefit and if there are no means for people to hold their governments to account. The UN Convention empowers them to do just that
The Japanese government deserves a UN prize for listening to its Coalition of Disabled Persons Organisations who told them not to ratify the UN Convention until Japanese laws had been changed to make it compliant. The Government Committee appointed for this purpose was co-chaired by a Minister and a person with a disability. Members with a disability were paid as temporary civil servants to co-draft the necessary legislation.
For people with dementia, it’s a steep mountain to climb because we live in a world of US and THEM, even in so-called dementia-friendly communities who don’t consult us before deciding what’s good for us.
By the same token, many Health Ministries are launching dementia strategies without fully involving and listening to the people they are designed to benefit.
Our co-founder and Chair Kate Swaffer lives in Australia and is with us today because she is also a member of the World Dementia Council, as is Hilary Doxford from England.
In March 2015 Kate Swaffer made three demands on behalf of our members at WHO’s First Ministerial Conference on Dementia:
- Policy and practice for people living with dementia should be based on the UN Convention Rights on the Rights of Persons with Disabilities.
- Research should focus as much on care and support as on cure
- A more ethical pathway of care, including pre and post-diagnostic support from a wide range of rehabilitation professionals in the community
We are now developing a formal working relationship with WHO in preparation for a new global dementia policy which will be discussed by the World Health Assembly next year.
Some of you may question whether we have the capacity to demand full participation in decision-making with professionals and politicians.
Generalisations about us are problematic because, notwhistanding our diagnosis, we are all unique individuals; some have more capacity than others but our levels of cognitive functioning can change dramatically in the course of a single day or hour.
Under-estimation of the capacity of people with all disabilities is the biggest single obstacle we face in remaining active citizens in our local communities.
No one would have predicted that children with Down Syndrome would complete secondary and tertiary education alongside their peers, that a person with an intellectual disability would address the General Assembly of the United Nations or that the UN Convention would be co-written in full partnership with persons with disabilities.
I say to you in all seriousness that you cannot understand the impact of dementia on people living with dementia without reading the books they have written. You all subscribe to evidence-based policy: these books provide evidence in plenty of the gap between policy and practice. I would go further and say that researchers need to consider the experience of people with dementia as hard data, just as important as data from the holy grail of randomised controlled drug trials.
My prescription starts with Kate Swaffer’s What the Hell Happened to My Brain? and continues with the others because each reflects a unique individual who is not only telling their story but making recommendations for changes in policy and practice and in research priorities. All of them describe dramatic changes in cognitive functions within a single day.
‘I CAN LIVE WELL WITH DEMENTIA’ STATEMENTS
We also have the ‘I Statements’ collected from people living with dementia in several countries around the world and which now form the basis of the Global Dementia Charter which international NGOs and professional associations are required to sign. These ‘I’ statements just happen to reflect key Articles of the UN Convention.
I will focus on two priority areas: diagnosis and ‘post-diagnostic support’
“I expect to have access to a doctor to check if I have dementia (art.25); medicine that helps and treats me (art. 26).
The first point to make is that very few people in Low and Middle Income Countries receive a diagnosis and that in the richest countries it depends on where you live and whether you can pay for it.
The stories told by people with dementia about the way they were informed of their diagnosis range from exemplary to the good, the bad and the unacceptably ugly.
Kate Swaffer has copyrighted ‘Prescribed Disengagement® to characterise the advice that she received at the age of 49 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. She cried for weeks but completed an M.Sc. in Dementia Studies and is now studying for a PhD and travelling the world to advocate for a better life for people with dementia.
The late Richard Taylor, a clinical psychologist and a highly respected co-founder of Dementia Alliance, also cried for weeks after his diagnosis and describes symptoms and relationship problems seen in people with Post-Traumatic Stress Disorder.
His book Alzheimers from the Inside Out includes a list of 30 things that he would do or bear in mind if he was “an M. Instead of a Ph. D.” These should be glued to the desk of any professional charged with the responsibility of delivering a diagnosis of dementia.
Many people with young onset dementia have been handed a prescription and told to come back when they are 65. This can be particularly traumatic in mid-career and with responsibilities for young children and elderly parents.
Legal capacity and fitness to drive are immediately threatened by a diagnosis of dementia, rather than evaluated by independent assessment of functioning.
Worst of all, a newly diagnosed person of any age is immediately confronted by the stigma and fear associated with dementia. A study by the UK Alzheimers Society reports that one third report losing friends. Neighbours and people they know cross the street to avoid them and some family members stop visiting because they are afraid that they will need to care for them. When Richard Taylor asked a close friend why he had stopped calling and was told that he didn’t know what to say, he said, try “Hello”.
Social isolation is compounded by lack of confidence in going out because of fear of failing. One third of people with dementia and 50 per cent of care partners are clinically depressed. Unusual behaviour or expression of emotion may be labelled ‘challenging behaviour’ and treated with long term psychotropic medication.
A REHABILITATION PATHWAY
DAI recommends that that ‘post-diagnostic’ support which is only available in very few places should be reconceptualised as a rehabilitation pathway. A service along these lines is being piloted in Australia by the Queensland Health Authority. It is run by Dr Denise Craig, a clinical psychologist who worked in partnership with Kate Swaffer in designing it
Please take part in a short thought experiment:
What services would you receive if you sustained a severe brain injury as a result of a stroke, a road traffic accident or a penetrating gunshot wound?
While you are still in hospital but no longer under intensive care, you might be seen by a range of professionals whose long-term aim is to enable you to return to the maximum extent possible to the way you lived before the brain injury. That’s what we want for people with dementia.
These might include a specialist in rehabilitation medicine, a physiotherapist to help you to learn to walk, a speech and language therapist to restore language and communication, a clinical psychologist to monitor and restore cognitive functioning or consider the need for an appropriate psychosocial intervention and a social worker or counsellor to discuss your transition from hospital to home.
Once home, you are likely to be visited by an occupational therapist who will discuss with you and your partner ways in which your home and basic equipment such as your personal computer might be adapted to meet your individual needs.
USING THE UNITED NATIONS CONVENTION TO PROMOTE THE RIGHTS OF PEOPLE LIVING WITH DEMENTIA
People with dementia are included in the broad definition of disability in Article 1 of the Convention but have not been included in its implementation by their governments. By the same token, the dementia strategies now being launched by many governments who have ratified the Convention do not reflect the General Principles and Articles of the Convention.
There is a pervasive but profoundly mistaken assumption that people with dementia are not included in the Convention. It may also be due to the fact that the international dementia community has taken no part in its creation or implementation and is only now gaining access to rights which are established in international law but ignored in practice. Dementia Alliance International is in dialogue with the United Nations on this matter because it amounts to systemic discrimination.
President Obama exceptionally signed the Convention which commits the US government to certain General Obligations but Senate has twice failed to ratify it. The 165 governments who have ratified the Convention are committed to its implementation and monitoring in international law. They can also be held to account by their own people, especially organisations of and for people with disabilities. Organisations for and of people with dementia are only now beginning to do so.
The Canadian government is currently in dialogue with the UN CRPD Committee which is studying its report on how it has implemented the Convention’s Principles and Articles. The Committee encourages civil society organisations to write parallel reports which are taken into account in its Concluding Observations and Recommendations and subsequently followed up.
The Alzheimer Society of Canada has recently joined with other Canadian disability organizations to argue for the inclusion of people living with dementia in the implementation and monitoring of the UN Convention. Furthermore, the Ontario Dementia Advisory Group, all of whom are DAI members, included access to the CRPD as one of their recommendations in testimony before a committee of the Canadian Senate.
I want to conclude by asking you to imagining two planets: Planet Disability and Planet Dementia. They spin on different axes but occasionally come close enough for their technology to reveal that there are human beings on both planets. Try as they might, they are unable to devise a way to communicate or join one another.
The whole of my professional life has been spent on Planet Disability where I have been a clinical psychologist, academic, policy adviser to governments and UN agencies but also worked in a voluntary capacity with Inclusion International, a world-wide federation of over 200 regional and national organisations for – but increasingly of – people with intellectual disabilities.
When I suddenly found myself on Planet Dementia, it really did seem to be a very different world:
- first because of the prominence of the medical profession and biomedical research, Health Ministries and WHO
- second, because of the comparative absence of protest about drastic cuts to services and supports
- but mostly by the absence of human rights in general and the then newly launched UN Convention in particular not only from government policy and professional practice but in the leading dementia research and professional journals and in those of national Alzheimer Societies.
The last two years reflect a shift of emphasis in all three areas.
Kate Swaffer’s demand for research to focus as much on care and support as on cure is increasingly reflected in research funding, the policy of the World Dementia Council and the UK Alzheimers Society. Sadly, too few researchers from the social sciences have so far submitted grant applications.
In the last analysis, improvements in services and supports to enable people with dementia to live well and to enjoy a higher quality of life in the community depend on a much higher level of awareness of dementia not only in the general public but among professionals and policy makers.
Dementia-friendly communities have contributed a great deal to raising public awareness but DAI takes the view that too many reflect an US and THEM perspective. This is inappropriate for people with dementia who have been active members of their local communities all their lives
The pervasive under-estimation of our potential contribution creates oppressive and humiliating barriers to full partnership. Some of us have even been publicly accused of being imposters because no one with dementia could possibly address a conference.
The last word goes to Professor Gerard Quinn, a distinguished academic lawyer and one of the first to secure disability rights as a United Nations priority:
“The UN CRPD is a mirror to society. It makes us face up to our own values and it forces us to acknowledge the large gap that still exists between the ‘myth system’ of our own values… and the ‘operations system’ of how these values are dishonoured in daily practice. Thus the Treaty is a force for rationality as well as a vehicle for carrying these values squarely to the heart of the disabilities field.
As with all mirrors, we can refuse to look into them; we can look at them but ignore their reflection or we can take notice of our reflection and commit to a process of change”. (Quinn 2009).
Peter’s power point slides can be downloaded here: Peter Mittler-Toronto-slides-27 July
Emeritus Professor Peter Mittler
DAI Human Rights Advisor
UN Consultant on disability
Former Advisor on Disability to UK Government
Former President, Inclusion International
Copyright 2016: Dementia Alliance International and Peter Mittler