Category Archives: Human rights

The Well-Educated Lab Rat: Clinical Research from Inside the Maze

Screen Shot 2016-08-13 at 8.24.56 AMMary L. Radnofsky, PhD, retired Professor and Board member of Dementia Alliance International (DAI) gave a brilliant keynote presentation in Budapest at the ADI2016 conference.  You can read the abstract, download her slides and view her presentation in this weeks blog. Thank you Mary for representing us so well, and for your permission to share it.

The Well-Educated Lab Rat:  Clinical Research from Inside the Maze

“As a former research professor and ethnographer, I know about quantitative and qualitative data-gathering instruments; I’ve done fieldwork in educational cultures with children, and watched these “rats” in their classroom “mazes.” But my reason for becoming the lab rat myself, in medical research, was unrelated to my profession: I just needed to see a doctor because I was sick. With a white matter disease, no job, and no health insurance, I found a way to access the best physicians, medical tests, and cutting-edge technology in the country: volunteer for a clinical trial at the National Institutes of Health.

Two years later, I’m still a part-time lab rat. Sometimes it’s actually good healthcare, as I get the most concerned specialists focused on me. I also learn much from these top experts about my condition. But being a lab rat takes emotional and physical tolls; for example, I didn’t have the “target” disease in my first clinical trial, so I “lost” that year, in that I couldn’t get treated. I do have a rare disease, though, so I got many tests – some fascinating, some painful – both on my mind and body. And I caught a hospital-borne virus that nearly killed me. That was a heavy toll, but I recovered, so I volunteered for another study. I still believe in the power of science.

I was enrolled for genome mapping, and had exciting results – though inconclusive, so I’m still waiting to “fit in” to another study for follow-up, and another year has passed. I’ll go back into the cage with the other lab rats, busy on a roller coaster of tests, expectations, procedures, paperwork, schedules, bureaucratic mazes, interviews, delays, confusion – oh, and by the way, we’re sick!

But we’re still important, funny, loved, needed, wanted, and occasionally, very well-educated lab rats. And we’ve got something to say about the ways you study us.”

By Mary L. Radnofsky, PhD

You can download her slides here: The Well-Educated Lab Rat_Mary Radnofsky PhD_ADIBudapest2016 and watch her speech below.

https://youtu.be/HPHHszU-o5I

 

LIVING WELL WITH DEMENTIA: A FUNDAMENTAL HUMAN RIGHT

peter mittlerThe 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’

DIAGNOSIS

“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.

CONCLUSIONS

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

A Human Rights update from Mary Radnofsky

DAI member Mary Radnofsky reports from her time at the United Nations in New York. Mary has also provided a gallery of images she took whilst attending the meeting representing us. Thank you from all of us Mary.

Dear Fellow Members of Dementia Alliance International (DAI),

I was recently in New York to represent DAI at the annual United Nations Conference of States Parties (COSP) to the Convention on the Rights of Persons with Disabilities (CRPD) June 13-17, 2016.

DAI’s Human Rights Adviser, Professor Peter Mittler, had to be in Brussels for another important event and has contributed background information for this report.

DAI is the global organisation OF people with dementia. We work in close but autonomous partnership with Alzheimer’s Disease International: the global organisation FOR people with dementia. In April 2016, the Council of ADI adopted a human rights-based policy, which includes full access for people living with dementia to the CRPD.

The United Nations has two basic roles: Peacekeeping and Economic and Social Development.

The UN commitment to human rights was reflected in the original Universal Declaration of Human Rights in 1948. This was followed by legally binding Conventions on Economic, Social and Cultural Rights; Civil and Cultural Rights and by a series of Conventions designed to benefit sections of the world’s populations who were not benefiting from the 1948 Declaration: women, children, people exposed to racial discrimination and torture, migrant workers. The CRPD is the most recent of these treaties, and preliminary discussions are now taking place on a Convention on the Rights of Older Persons.

The UN Convention on the Rights of Persons with Disabilities (CRPD)

The CRPD is an international treaty whose purpose is to ensure that governments safeguard the human rights of persons with disabilities. Because it was adopted by the UN General Assembly in December 2006, we are celebrating the 10th anniversary of a landmark international agreement that holds governments both to a moral standard and to a commitment in international law to promote and protect the rights of people with disabilities.

ISSUES RAISED BY DEMENTIA ALLIANCE INTERNATIONAL

Although people living with dementia are included in the broad definition of disability in Article 1 of the CRPD, they are being excluded from its implementation by their governments (except in Scotland).

In addition, new regional and national dementia strategies launched in the last few years by governments who have ratified the CRPD have not used CRPD Principles and Articles to underpin these strategies.

This may reflect the fact that organisations for people with dementia were not present when Disabled Persons’ Organisations first proposed such a Convention to the UN in the 1980s, while it was being co-drafted by government representatives and Disabled Persons’ Organisations or in its subsequent development and monitoring.

Under the Convention, DAI already has the right to raise its concerns with the United Nations, the European Commission and the World Health Organisation because the exclusion of people with dementia from an international treaty to which they are legally entitled is tantamount to discrimination, even though this may not be the intention.

Participants at the Conference of States Parties (COSP)

Delegates from the 165 countries that have ratified the CRPD assemble yearly for the COSP to discuss what has, and has not been achieved in meeting the requirements of the treaty.

Non-Governmental Organisations and Disabled Persons Organisations can also send representatives, as can all recognised Civil Society Organisations. The unique character of the CRPD Committee, 17 of whose 18 members have a disability, makes the CRPD the first UN treaty to be created and monitored by the people it is designed to benefit. Accordingly, it takes full account of the views of organisations of persons with disabilities.

Full information on the COSP, CRPD, a list of ratifying countries as well as the UN Enable Newsletters can be found on www.un.org/disabilities in English and other languages.

The United States Congress has still not ratified the CRPD, though it participated in its drafting and President Obama’s signature commits the USA to its General Principles. These are:

  1. Respect for the inherent dignity, individual autonomy, including the freedom to make one’s own choices, and independence of persons
  2. Non-discrimination
  3. Full and effective participation and inclusion in society
  4. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity
  5. Equality of opportunity
  6. Accessibility
  7. Equality between men and women
  8. Respect for the evolving capacities of children with disabilities and respect for the rights of children with disabilities to preserve their identities.

The UN 2030 Sustainable Development Goals (SDGs)

The main theme of this COSP meeting was “Implementing the 2030 Development Agenda for all Persons with Disabilities: Leaving No One Behind.”

The 17 Goals are: No Poverty; Zero Hunger; Good Health and Well-Being; Quality Education; Gender Equality; Clean Water and Sanitation; Affordable and Clean Energy; Industry, Innovation and Infrastructure; Reduced Inequalities; Sustainable Cities and Communities; Climate Action; Life Below Water; Life on Land; Peace and Justice: Strong Institutions; Partnerships for the Goals.

Because people with disabilities had not been mentioned in the original 2000-2015 Millennium Development Goals, Disabled Persons’ Organisations such as our friends at Inclusion International (www.inclusion-international.org) have worked hard and successfully to ensure that persons with disabilities were explicitly included in the indicators that have since been developed to check its progress.

DAI is applying to join the International Disability Alliance to make it clear that its advocacy includes us.

DAI has expressed its concern that people with dementia, especially in Low- and Middle-Income Countries, are at greatest risk of being Left Behind because they have not been involved in the drafting of policies to protect them. DAI will be raising this issue with the UN High Commission on Human Rights which monitors all human rights.

The four sub-themes for the COSP were:
  1. Eliminating poverty and inequalities for all persons with disabilities
  2. Protecting the rights of persons with mental and intellectual disabilities
  3. Enhancing accessibility to information, technology and inclusive development
  4. Celebrating the 10th Anniversary of the CRPD.

MY CONTRIBUTIONS, CONTACTS AND IMPRESSIONS

My name is Mary Radnofsky. I’m American. Although I was diagnosed many years ago, I’ve only ‘come out’ two months ago. I’m here to represent Dementia Alliance International. We ARE the voice of dementia: We speak for ourselves. 

Since DAI was founded by Kate Swaffer and six others in 2014, we have gained some 2000 members from across the world with a wide range of cognitive impairments and medical diagnoses of dementia, the most common being Alzheimer’s Disease. There are some 50 million people living with dementia across the world, and our numbers are set to double every twenty years because people are living longer.

Whatever our diagnoses, we are, like all of you, unique individuals. But all too often, we are stripped of that individuality at the point of diagnosis. We then become subject to the stigma, fear and ignorance that surrounds the complex and little-understood effects of this group of diseases on our day-to-day lives, in our homes, on our families and friends – effects which can lead to social isolation and the denial of our individuality.

My question was: “How can the CRPD help to eliminate culturally-systemic discrimination against people with disabilities, especially those of us who have felt that we’ve had to hide our condition rather than deal with our society’s stigma?”

As I was leaving the UN on my last day, a young man who works in the office of the UN Special Rapporteur on Disability told me that my comment regarding stigma associated with the disability of dementia was important, and the first time he had heard this issue raised. He assured me it would be included in his UN report.

Legal Capacity and Our Rights

Regarding “legal capacity” of individuals diagnosed with mental or intellectual disabilities, advocates stated that ‘substitute decision-making mechanisms’ must be replaced by ‘supported decision-making’ but these practices are on a continuum, and legal experts are split on where to draw the line.

The CRPD calls for laws which systematically allow – and often encourage – someone other than the person with the disability to make decisions on his or her behalf should be abolished. DAI maintains that decisions about competence should be based on impartial, independent assessments, such as yearly driving tests.

Klaus Lachwitz, President of Inclusion International and a lawyer, said that no country has thus far successfully implemented an assistive decision-making program that meets CRPD requirements. Several have tried but have merely substituted one decision making body for another. One complication is that people with dementia and mental and intellectual disabilities may want and need assistance. How and when to provide that assistance is difficult.

Teresa di Fiandra, from the Italian Ministry of Health explained that her country created a Support Authority to help people with decision-making – not to reduce their choices but to help them maintain autonomy as long as possible.

The Civil Society Forum

I sat in on a high-level political forum on the participation of people with disabilities, and a discussion of practical steps for implementation. When the floor opened for comments, I introduced myself as a person living with dementia and representing Dementia Alliance International, with the question,

How can people with dementia begin to participate in decision-making processes as well as in the implementation of these strategies, and become active participants or members of committees?”

Alistair de Gaetano, an expert in disability law and human rights from Dublin suggested joining advocacy groups and linking to larger networks to work on major projects together. The self-advocacy movement was a dominant theme at the conference: that is why we were there.

Several countries and organizations are highly supportive of DAI, contributing not only to our collective strength, but also to our individual mental and physical health. For example, Mohammed Ali Loutfy of Lebanon said that, despite many countries’ steps to recognize the CRPD, all governments must involve people with disabilities, because we are the experts on the conditions of our lives.

I spoke with several Italians and people from the tiny Republic of San Marino in central Italy. One of the delegates explained that when a child has a disability, there is respect for the child. The problem is that they are no longer respected when they become adults. Social attitudes must be changed.

Another Italian, Sebastiano Cardi, Vice President of the COSP, said that Italy had just adopted a new law to help people with disabilities in what he calls the “after” time, i.e., when parents or other caregivers die or leave. In other words, the state will help, but people with disabilities whose adult children care for them need back-up plans.

Speaking about the rights of women with disabilities, Judith E. Heumann, of the American Women with Disabilities Forum in Washington, DC, and advisor to Presidents Clinton and Obama, said that empowerment of disabled women is critical. In general, women with disabilities need to participate more in the electoral process, and run for political offices at all levels.

In all countries, including the US, people with disabilities are twice as likely to be un- and under-employed than non-disabled people. Yet research shows that across the board, people with disabilities boost a company’s productivity, engaging non-disabled colleagues in more creative work.

Several self-advocates with an intellectual disability from Inclusion International pointed out that many barriers to inclusion are often not due to their disabilities but rather to society’s attitudes; people with disabilities often don’t have enough choices and don’t get the needed support because other people simply don’t know or understand what those of us with disabilities find important. So it’s our responsibility to make our voices heard. Self-advocacy is key.

When Klaus Lachwitz, President of Inclusion International was asked what was missing from the dialogue on people with disabilities, he unflinchingly stated

 “What’s missing is the big group of people with dementia. We’re a generation of people getting older. We all know people with dementia… So all of these things have to be discussed, interpreted and described”.

GENERAL OBSERVATIONS

Prince Hussein of Jordan, who reported on advances in his country, commended the UN on refurbishing the General Assembly Hall but added that the high podium should be accessible. This was, after all, a Conference on the Convention on the Rights of Persons with Disabilities. The panel of officials had to sit behind a fold-up table at ground level, squeezed in front of the first row of delegates because there are a dozen stairs to get to the high podium!

Equally ironic and unfortunate were the elections for membership of the CRPD committee by Member States resulting in seventeen men and only one woman. This happened despite clear guidance from the UN that the Committee should be balanced for gender, ethnicity and location.

On a positive note, one of the men elected was Robert Martin, proposed by the New Zealand government, a self-advocate, and the first person with an intellectual disability to sit on the committee. He helped draft the CRPD and has been active in its implementation ever since.

It took ten years for a person with an intellectual disability to be elected. How long will it take for a person with dementia to join him? 

IMPLICATIONS FOR DEMENTIA ALLIANCE INTERNATIONAL

At DAI, we are uniquely situated to provide the expertise needed for these discussions. There is a role for all of us to play as we advocate for our rights and simply show how we can live well with dementia for many years.

So start to think about what YOU can do to improve the lives of people with dementia – including your own. You might want to print and mail out flyers, make phone calls, write or edit letters, do fundraising, put an ad in the paper or online for group events, record stories from people living well with dementia, speak to classrooms or clubs, assemble articles about brain research, post notices of drug trials and non-pharmaceutical treatments, attend support groups, share recipes, describe successful dietary and exercise ideas – above all, recruit new members to DAI!

I need DAI so I can maintain the quality of life that I’ve found through support groups and advocacy. DAI needs you because you can make a difference in the world for everyone whose lives you touch. Through letters, social media, phone, email, and in person, you can still reach a lot of people that need DAI too.

Let’s continue to help each other enjoy our lives, starting with our human right to medical care, living in our communities, and choosing how we want to be treated.

Thanks.

Mary L. Radnofsky, Ph.D.
June 28, 2016

Dementia Friendly Kiama, by Dennis Frost

Dennis Frost is a member of Dementia Alliance International and also the Inaugural Chair of the Southern Dementia Advisory Group in Kiama NSW, which guides the DFC pilot project between the Kiama Council, University of Wollongong and which Alzheimer;s Australia were also involved in nationally. Many consider this to be the gold standard dementia friendly communities project globally.

Dennis is from NSW and was a keynote speaker at the ADI20-16 conference in Budapest this year titled Dementia Friendly Kiama, which you can view here:

 

Please note: If you are watching this free video, and are employed or can afford to donate the fee you would have paid to attend on the day of $45 USD, please donate here – http://www.dementiaallianceinternational.org/donate/

DAI is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

Membership of Dementia Alliance International is free, and open to anyone with a medically confirmed diagnosis of any type of dementia.

Join DAI here www.joindai.org

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We are changing the world!

Screen Shot 2016-06-17 at 11.28.44 AMThis 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.

https://www.dropbox.com/s/vysxcd0fg4m802h/DAI%20question%20to%20CRPD.mov?dl=0″

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.

Day 2 at the United Nations in NYC

Screen Shot 2016-06-16 at 5.43.07 PMDAI Member Mary Radnofsky has been sending journal like entries reporting on her time at the United Nations event in New York City. Whilst I suspect we have exhausted her as her notes are starting to read like the final stages of a thesis, she has represented us wonderfully well.

Living with dementia has its many daily challenges, but to then be amongst mostly strangers, many who probably have very old fashioned stigmatising attitudes about people with dementia, I have nothing but admiration for her. Mary, we all thank you for your considerable effort.

On June 15, 2016 Mary attended a COSP Morning side events promoting the rights of persons with psycho-social and intellectual disabilities, which was sponsored by Inclusion International. There were back-to-back sessions with no real breaks, because she also had to catch people in between, but she has been busy sending updates.

Here are some of Mary’s remarks about the first session:

Moderator, Vladimir, echoed the disappointment that no women were voted in. Applauded that Robert Martin was elected, as first deaf person, yes, but that everyone that was elected was a man.

Fatima from Kenya, from Inclusion International (II) talked about the Psychosocial (psd) approach to people living with disabilities (plwd); most plwd live at home, and the families receive little or no support. Communities that are designed to be inclusive will be more welcoming to all families. Self-advocacy is necessary if people are to become included in their own communities. They must raise their voice.

Also, families need financial and support network.    But they mostly get information from doctors, so they get mostly only a medical approach, from the time their children are a very young age. So it stays medical. We need to focus on community development efforts that ensure citizens are included. It is not enough to just open the doors. This approach is not sufficient to reach people in remote areas.

This sounds no different to how people with dementia are treated.

Mary wrote of a real contrast between the great Italian efforts and those who argued it was more cost effective to keep disabled people institutionalised. Wow, who would think those attitudes are still even in existence, but to think at an event like this they are prevalent is mildly concerning.

For example, the Italians have closed all mental hospitals. Robert Martin called for the closure of all institutions around the world. It’s so hard, but on behalf of people surviving Psychiatry, he wants to do this. People do not need to be segregated. They are citizens.

SEBASTANO CARDI VP of CRPD
In Italian parliament just adopted new law yesterday: What about the “after” i.e. what happens to the person with disability when parents are no longer there? Plwd always face stigma. Many challenges.

Now, mental hospitals must be closed or used differently. The whole system should be concentrated on community-based facilities. Wants to join forces for a better world.

There was discussions about Psychosocial disabilities (Psd) reported by Mary here;

Yenni Diamente talked on What does it mean to have psychosocial disability in Indonesia? Shackling. Psychotic Drugs. Govt pays $400/month. But the need for drugs is not the problem for these people. They need a job, they need housing. But they take the anti-psychotic drug, and still have no job or home. And they have shame. Medical treatment is only a small part of the solution. Don’t put all the money in that box! A person with psdis has a life, just like anyone else. We need all the support that everybody needs. Meds are only a small part of that.

People see us as incapable of making our own decisions. We are told we have to take the meds. But it makes us feel sick or zombie, and we don’t want to. But in Indonesia, we don’t have the right to say no. We lose the right to vote, to get inheritance, we have no rights as citizens. Can’t open a bank account. Treated like (worse than) a child. Opens up the system to abuse and violence.

Psd still not considered part of disability movement. Psychiatrists talk ABOUT you, and you’re not invited to speak; they speak on your behalf. If you want to talk about psd, don’t talk to psych, talk to the person! That’s the most important message.

Interestingly though, this morning’s panel did not have a person with psd.

Wow, this is almost no different to people with dementia.

And in contrast to the progressive thinking in Italy, one President of an employment agency said that it would cost more to put the people with disabilities (PWD) in community programs, and that it would be dangerous to take them out of institutions and put them at risk of dying in the streets.  He used fear-mongering, unsubstantiated arguments about the cost being higher to care for them in a community than in an institution, and that it would not be possible to follow up with them if they were just living in neighborhoods, and not in institutions where they can be cared for

Perhaps attitudes like this are why people with dementia are still being institutionalised? We look forward to more instalments from Mary, as we pursue our place within the disability community, and claim our human rights in this space as well. No one was offering us a human rights based approach in the dementia sector, so let’s hope the disability sector is the right approach. I certainly think so.

So, onwards and upwards through the fog, as we all work towards a better world for people with dementia and our families.

The pursuit of our human rights continues…

Professor Mary RadnofskyThis 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.”

Talk to you again soon.

Mary Radnofsky.

 

Dr Al Power: Is it time to abandon memory care?

We are ending Dementia Awareness Week UK #DAW2016 with a presentation given by Dr G Allen Power in Budapest in April. Thanks to Al for allowing us to share it here and allowing us to upload it onto our YouTube channel. It is mildly provocative, but a great way to end a great week! Quite frankly though, most of us would NOT want to live in a secure dementia unit… that is a cold hard fact!

Agnes Houston MBE on Sensory Challenges #DAW2016 #ADI2016

Screen Shot 2016-05-18 at 5.15.17 PMToday, the third day of Dementia Awareness Week UK, we are posting the presentation give by DAI Board member and EDWG member Agnes Houston MBE recently at ADI2016 in Budapest.

#DAW2016 #ADI2016

Download the booklet here: Dementia and Sensory Challenges- dementia can be more than memory

Watch Agnes’s presentation here:

Read her presentation notes here:

Slide 1

Hi everybody I hope you are all enjoying this conference. I feel privileged to be here and will share it with my Dementia friends who could not be here.

My name is Agnes. I have been living with Dementia of the Alzheimer type for ten years now.

Slide 2

As you can see from this slide, dementia is more than memory. In the UK, it’s classified as a mental health condition with physical and social implications.

DAI note: In Australia and other countries, it is not classified as a mental health condition or illness, but as a group of physical conditions that cause cognitive impairment or dementia

Yet why is it at our dementia reviews? Doctors and nurses concentrated on and test our memory. Yet for us living with all types of dementia, we seem to receive no guidance on how to cope with sensory and other stuff.

As For me, nobody asked about my sensory challenges, and when I brought it up no assistance was given, either practical or emotional.

I found my help and understanding at the ADI conference 2011 in Toronto.

Yes 5 years ago!

I was given the proper words to use for my Dementia and sensory challenges, so I could ask for help in Scotland at our annual Dementia review can you include:

  • Sensory and give it equal attention

Then if we have sensory challenges, sign post us on to services like opthopist for visual problems and audiology for hyperaccusis, and Neurology for other issues.

PLEASE ask your questions in a way

In 2014 at the European conference in Glasgow, Life changes trust funded over 35 PWD to attend. It’s good to help us financially to attend these conferences.

Why?  So that we can talk to each another and share our experiences and take it back to our own countries and Alzheimer associations.

That is when this booklet was decided upon.

We realised we came to conferences and that little was being presented about sensory challenges and Dementia. Yet behind the scenes we the PWD, are sharing stories and helping one another to try and come to terms with our scary daily sensory challenges.

This booklet is the result of interviewing 24 PWD all ages and different types of Dementia. We don’t profess to have the answers. We tell our lived experience then relate what we do and we hope this booklet will encourage you to think how we can assist with these issues.

Whilst Donna was transcribing these interviews common themes emerged and she spoke of these as the four A’ s:

  • Awareness
  • Accepting
  • Adapting
  • Avoiding

September 2015 in Slovenia

I spoke at the European working group session and gave a preview of this booklet. (At the time no DVD was available). Here is some feedback and quotes on the slide.

Slide7 (people from York)

This booklet would not have happened without collaboration from people with Dementia, who gave of their time? And shared their lived experience.

This photo was taken at a DEEP (Dementia Engagement and Empowerment Project).

Event in London, and you can see how happy we all were to see the booklet in print, and hear how well it has been received.

We wish the professionals would listen.

As Elaine said it’s a relief to meet others with the same symptoms I no longer feel alone.

Another Person said, Dementia is more than Memory.

Slide 8:

Feedback from the booklet has been positive. We have been asked to give permission to have it translated into other languages.

Like Welsh and Italian, and an architect Birgit Dietz we meet in Slovenia has taken a particular interest in how to use this information in her field. People with dementia and their CARERS have already taken it to GPs and opticians to explain their symptoms.

People with dementia feel empowered and no longer alone when they read this booklet and recognise their own  experiences being described by others. It’s good to know others have it too.

After 7 years of my sensory journey I have just been told that I am officially going on the partially sighted register a few months ago. My eye consultant said after extensive and repeated tests lasting months, and consulting with your Dementia consultant:

“This is all we can do for you (put prisms in your glasses). It is not an eye issue, your eyes are healthy. It is a brain/dementia issue”

Last month after a requested visit to see an audiologist, I was officially diagnosed with Hyperaccusis. The audiologist said I was nearly off her chart and she was surprised I could cope with the Sensory overload when I leave the house.

Slide 1I Think I will leave the last words to Ross,  a person living with Dementia for over 16 years now. He said:

“A lot of people have been interviewed for this booklet. We can’t all be wrong, so please take a copy. Look at it, listen to it and take something out of it.”

Slide 11

This booklet can be downloaded for free on the life changes trust website, and there is also links to the DVD online as well.

The legacy of this project is the increased awareness in people with dementia, their carers and friends. The professonials are also spreading the word.

“Think Dementia, Think Sensory”

Thank you for listening.

Copyright: Agnes Houston MBE 2016

Download Agnes’s power point slides here: Agnes Houston Budapest ADI2016

YOU can make a difference #DAW2016

Screen Shot 2015-07-28 at 10.18.21 amThis week during Dementia Awareness Week UK #DAW2016, we take time to remember the late Richard Taylor PhD, one of the co-founders of DAI. This organisation was a dream shared with him by many of us, and I hope he would be proud to see what we have achieved.

More importantly, I hope he would be most proud to see how we are continuing to support people diagnosed with dementia on a daily basis, and supporting them to live with dementia, not only to die from it. We are all keen on #LivingBeyondDementia

To help us with this dream, you have a special opportunity to donate to our current fundraising campaign. Every dollar, pound, Euro or the currency of your country that you donate goes directly to supporting people with dementia to support themselves.

Please donate here…

We are an extremely efficient nonprofit, no staff to pay, very low overheads, and importantly ALL the money you donate helps people with dementia to live a better quality of life with a purpose and support from others also living with dementia. Your donation will help reduce the stigma and discrimination.

Donations also help DAI continue its vital work on pursuing a human rights based approach for all people with dementia through the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD). We operate through the hard work of many members who all have a diagnosis of dementia, and others on a volunteer basis. We also receive a lot of pro bono support from professional s and academics in dementia.

YOUR donation ensures there will be ‘Nothing about us, without us’.

It’s only Tuesday, and it has already been an exciting week following the launch yesterday of our guide to human rights, and you can download the guide here: Human Rights for People Living with Dementia – Rhetoric to Reality

“What matters to us now is that people living with dementia should be empowered to use their undisputed right of access to this and to other relevant UN Human Rights Conventions, including a future Convention on the Rights of Older Persons.” Professor Peter Mittler.

We rely on donations to continue our work in supporting ourselves and each other, and to reaching those people who are newly diagnosed, including one new diagnosis somewhere in the world every 3.2 seconds.

Thank you to everyone who is able to donate.

Whether it is $1, $10 or $500, every single dollar makes a difference to the lived experience of real people living with any type of dementia.