Category Archives: Human rights

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.

DAI Media Release

The human rights of people living with dementia: from Rhetoric to Reality

Dementia Alliance International is proud to be launching its first official publication to coincide with the adoption by Alzheimer’s Disease International of a Human Right based approach, and to coincide with Dementia Awareness Week UK 2016. With input from our Human Rights Advisor Professor Peter Mittler, and other experts, we hope this guide will educate and support the activities of individuals and organisations, and will be the beginning of real change.  We have had much rhetoric and agreement that we have human rights; now we want real action.

Media Release:

There are currently more than 47 million people with dementia globally and one new diagnosis every 3.2 seconds[i]. There are 850,000 people in the UK who have a form of dementia[ii], more than 5 million[iii] in America, and more than 353,800[iv] Australians with dementia in Australia.  If dementia were a country, it would be the 18th largest economy.

Dementia Alliance International (DAI) is an advocacy group, the peak body and global voice of people with dementia. Our mission includes Human Rights based approaches that are applied to the pre and post-diagnostic experiences of people with a dementia, in every way. We advocate for a more ethical pathway of support that includes our human right to full rehabilitation and full inclusion in civil society; “nothing about us, without us.”

“We are launching this landmark Dementia Alliance International guide because, as a direct result of DAI’s advocacy and a rights-based approach including access to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) has just been adopted by Alzheimer’s Disease International. This is a watershed moment for people with dementia across the world.”  Kate Swaffer

The human rights of people with dementia lie at the heart of our work. Access to the UN Disability Convention was one of the demands made by DAI’s Chair, Kate Swaffer at the World Health Organisation’s First Ministerial Conference on Dementia held in Geneva in March 2015. Since then, we have done everything we can to make a reality of that demand.

“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

You can download a copy of our publication here: Human Rights for People Living with Dementia – Rhetoric to Reality

You can view a video of Kate Swaffer and Peter Mittler introducing the need for a human rights based approach to dementia at the recent ADI Conference in Budapest here:

Membership of DAI is exclusive to people with a medically confirmed diagnosis of dementia; to join our exclusive club or to join a support group, visit us here www.joindai.org.

Contact details

Contact Kate Swaffer for more information or read more about the work of Dementia Alliance International here.

Follow us on @DementiaAlliance

Kate Swaffer, Chair, CEO, Co-founder of Dementia Alliance International and author of What the hell happened to my brain?: Living beyond dementia, published on January 21, 2016.

References

[i] World Health Organisation, Dementia Statistics (2015) http://www.who.int/mediacentre/news/releases/2015/action-on-dementia/en/

[ii] Alzheimer’s Association, (2016). 2016 Alzheimer’s Disease Facts and Figures. http://www.alz.org/facts/overview.asp

[iii] Alzheimer’s Society UK (2014). Dementia 2014 report statistics, https://www.alzheimers.org.uk/statistics

[iv] Alzheimer’s Australia (2016) Key Statistics, https://fightdementia.org.au/about-dementia/statistics

ADI2016 Budapest: an introduction

1This year, a number of DAI members have had the great privilege and honour to attend the Alzheimer’s Disease International 2016 Conference held the last few days in Budapest. As Chair, CEO and co-founder, as well as now an official ADI Board member, it has been a very busy week, and  none has had time to write a blog about it.

I’m hoping our pictures on Facebook have helped you feel vaguely connected. Most have been added to individual members pages, as I forgot to add many to our own Facebook page!

On the day before the conference, history was made for the second time. The first time we made history was when I was invited to Geneva to present at the WHO First Ministerial Conference on Dementia, and placed Human Rights and Disability Rights on the global agenda last year in March, demanding access to the United Nations Conventions of the Rights of Persons with Disabilities.

This started a global campaign, and with the help and expertise of DAI member Professor Peter Mittler, a report was written by Neil Crowther, on behalf of DAI and ADI. It was submitted to the ADI Council members (the country Alzheimer’s Associations/Societies) on Wednesday, and it was unanimously accepted, and agreed that the campaign for the human rights of people with dementia will be continued, hence o ur second historical moment.

DAI co-founder and current Treasurer, John Sandblom represented us well by giving the Inaugural Richard Taylor Memorial Lecture, which of course, brought may of us to tears. It is though, wonderful to know that Richard’s legacy will live on, and we will also have the first Richard Taylor Advocates Award, to be announced on World Alzheimer’s Day in September of this year. Information regarding this will be sent to our members and supporters very soon.

Until we have time to edit and add the videos and presentations notes from the many speeches given by people with dementia, who by the way, were in every session, the best speakers by far (no bias at all here, as many delegates have said this)…

As soon as I get home to Adelaide, I will make every effort to write a review of the conference, but for now, I have added a photo collage of photographs below.

Those of us who attended, worked very hard to ensure we represented as many voices as humanly possible, and worked very hard trying to do so. As the photographs will show you, we also had a lot of fun!

ADI2016 photo collage

Best wishes,

Kate Swaffer

Human Rights and dementia #ADI2016

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.

Screen Shot 2016-04-18 at 9.48.23 am

 

 

 

DEMENTIA ALLIANCE INTERNATIONAL[i]

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

SUMMARY

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.

INTRODUCTION

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.

BACKGROUND

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.

SOCIAL ISOLATION

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.

STIGMA

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.

REHABILITATION PATHWAY

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.

COMMUNITY-BASED REHABILITATION

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.

RECOMMENDATION

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

  1. 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.
  2. 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.
  3. 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

References

[i] http://www.infodai.org

[ii] http://www.alz.co.uk/sites/default/files/pdfs/global-dementia-charter-i-can-live-well-with-dementia.pdf

[iii] http://www.alz.co.uk

[iv] http://www.who.int/mental_health/neurology/dementia/call_for_action_en.pdf?ua=

[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.

[viii] http://www.keepeek.com/Digital-Asset-Management/oecd/social-issues-migration-health/addressing-dementia_9789264231726-en#page1

[ix] WHO (2004) Global Burden of Disease. http://www.who.int/healthinfo/global_burden_disease/GBD_report_2004update_full.pdf?ua=1

[x] Alzheimer’s Society (2016) Fix Dementia Care Hospitals. www.alzheimers.org.uk/fixdementiacare

[xi] Whitman, L. ed.) (2009) Telling Tales About Dementia: Experience of Caring. London: JKP; Magnusson, S. (2014) Where Memories Go. www.tworoadsbooks.com

[xii] Swaffer, K. (2016) op.cit pp.165-166.

[xiii] https://www.health.qld.gov.au/cairns_hinterland/docs/gp-dementia-enablement-guide.pdf

[xiv] British Psychological Society (2014) A Guide to Psychosocial Interventions in Early Stages of Dementia; Clinical Psychology in the Early Stages of the Dementia Pathway. www.bps.org.uk/fpop

[xv] UN Sustainable Development Goals. http://www.undp.org/content/undp/en/home/sdgoverview/post-2015-development-agenda.html

[xvi] WHO, UNESCO, ILO & IDDC (2010) Community Based CBR Guidelines: Introductory Booklet, Geneva: WHO. http://apps.who.int/iris/bitstream/10665/44405/9/9789241548052_introductory_eng.pdf

[xvii] WHO (2014) Global Disability Action Plan 2014-2021: Better Health for All Disabilities. Geneva :WHO http://apps.who.int/gb/ebwha/pdf_files/EB134_16-en.pdf?ua=1

Psychologist Denise Craig presents “The Dementia Enablement Guide”

Last week we had the privilege and pleasure of a supporter of DAI, and friend of our members, senior psychologist Denise Craig from Cairns in Queensland. To introduce the presentation, Denise said:

When my mother was diagnosed with Alzheimer’s and Vascular dementia at the age of 65, dementia became my working life’s vocation. I was fortunate enough to achieve a position where I could assist people diagnosed with dementia, and those providing care and support, both through face to face assistance and also ‘bigger picture’ systemic strategies.

In 2012 as a private undertaking I established a Facebook page. Via posts and private messages I have had the opportunity to hear from many people with rich and diverse stories to tell. Through social media I noticed a pattern of criticism of health professionals, namely that there is little help after diagnosis.

People diagnosed with dementia, care partners, family & friends, can find it hard to come to terms with a dementia diagnosis. Bearing in mind that no two people will have identical experiences, generally speaking dementia is an illness for which support is imperative.

Support includes both early intervention & ongoing assistance to adjust to changes, develop coping strategies, maintain maximal independence & improve quality of life. Holistic assistance which encourages people to live to their personal potential is the cornerstone of good care. By adopting an enabling approach focused on preferred occupation & meaningful activity, independence & well-being, people diagnosed with dementia & their significant others have an opportunity to live to their post-diagnosis potential.

Twelve months ago whilst meeting Kate Swaffer in Melbourne, we shared a robust conversation about rehabilitative/enablement opportunities. I committed to the construction of a ‘Dementia Enablement Guide’ to assist GPs to discuss options which consumers might find helpful.

Through my role within the Qld Statewide Dementia Clinical Network I established a multidisciplinary group which completed this project. A group of people living with dementia, care partners, clinicians and academics reviewed the document and provided valuable feedback. The tool is being trialled in Cairns and Kiama, NSW (as a part of their DFC project), and a consumer version is nearing completion.

The Dementia Enablement Guide is freely available via Qld Health’s website at https://www.health.qld.gov.au/cairns_hinterland/docs/gp-dementia-enablement-guide.pdf

You can also download Denise’s power point slides here Denise Craig presents The Dementia Enablement Guide to DAI