Category Archives: disAbility rights

Civil Society Forum – Day 2 update

In June I was representing DAI in New York attending day 2 of the pre conference Civil Society Forum , followed by the 11th Session of the Conference Of State Parties (COSP) on the Convention of the Rights of Persons with Disabilities (CRPD).

I apologise for a late report on it; and there are more to come! Clearly, there are not enough hours in each day, or days in each week!

The Overarching Theme this year of the 11th COSP was “Leaving no one behind through the full implementation of the CRPD”, with the following Subthemes and Crosscutting themes.

Sub-themes:

1. National fiscal space, public-private partnerships and international cooperation for strengthening the implementation of the CRPD
2. Women and girls with disabilities
3. Political participation and equal recognition before the law

Cross-cutting theme:

Promoting high-quality disability statistics and disaggregation of data by disability status for the full realization of the rights of persons with disabilities.

It was very pleasing to be given the opportunity to make various statements, the first one on Day 2 of the Civil Society Forum, the pre COSP event which I was only able to attend on the second day. It was an opportunity to ensure dementia was not forgotten as a condition causing acquired, and progressive cognitive disabilities.

My first statement, not pre-planned, but made in the discussion time after the main speakers in the aftrenoon of Day 2 of the Civil Society  Forum on June 11, 2018 is listed below.

Statement 1 – Day 2 of the Civil Society Forum in New York, preceding the COSP.

My name is Kate Swaffer, a co founder and the current Chair and CEO of Dementia Alliance International. I’d first like to thank Klaus Lachwitz from the International Disability Alliance for mentioning dementia in his earlier comment, which was the first time this condition has made it into the discussions today.

I represent the 50 million people currently living with dementia, and am also one of them. The WHO states there is a new diagnosis of dementia every 3 seconds, and whilst dementia is a chronic, progressive terminal condition, it is also the leading cause of death and disability in older persons.

Yet most people in civil society do not yet see this condition as one that brings with it acquired cognitive disabilities, and I ask that we consider this today, to ensure that no one is left behind.

Dementia disproportionality impacts women and girls; more women are diagnosed with dementia, and women and girls make up more than two thirds of unpaid carers, and more than 70% are women and girls in Low and Middle Income Countries.

People with dementia are systematically excluded from rights based and equitable inclusion; the barriers are far more than dementia.

The real barriers are due to stigma, discrimination and the misperceptions about the capacity of people with dementia, and the many breaches of our most basic of human rights.

Inclusion continues to be a ‘tick box’ experience for many of us, and very often, self-advocacy requires significant self-funding, simply to ensure our rights under Articles 4.3 and 33.3, of which discussions have been exclusively focused on today.

We therefore ask for not only inclusion, but for appropriate funding from governments and NGO’s or DPO’s to ensure full and equal inclusion and participation of this cohort, to enable it. As many have speakers have stated today, this is undoubtedly our right.

Thank you.

Kate Swaffer
Chair, CEO & Co-founder
Dementia Alliance International

Dementia and Palliative Care

On Day 5 of the World Health Assembly (WHA), our Chair read out a statement with the Worldwide Hospice Palliative Care Alliance (WHPCA), also ensuring dementia was represented at the WHA, and included in the discussions on palliative care and hospice. DAI was honoured to be able to work with the WHPCA, and to read out the joint statement.

Until quite recently, it was believed peole with dementia didn’t feel pain, and we did not even qualify for palliative care or admission to a hospice unit. We now know this to be wrong, for it to be a breach of human rights, and thankfully, there has been much advocacy by many individuals and organisatons to ensure palliative care is provided for people with dementia. You can watch Kate Swaffer’s short speech below (all speeches were shortened significantly, due to the session that day running over time).

‘Tackling Dementia – It’s Everybody’s Business’

DAI is proud to support Alzheimer’s New Zealand today by promoting their upcoming biannual conference.

Alzheimer’s New Zealand is a member of our strategic partner, Alzheimer’s Disease International.

Although DAI is regularly asked to promote conferences, if we did this for every dementia related conference in the world, our site would be transformed from one for people with dementia (our members), into a global confernce program, so instead, we limit this to ADI members only, as requested.

DAI also heavily promotes the attendance  of members and their care partners to attend ADI and ADI member conferences, and does quite lot of fundraising to support attendance. It is wondeful that Alzhemer’s New Zealand have found a sponsor the the second time so that registration for peoplewith dementia and thei care parter is free again.

Alzheimer’s Scotland managed to do this for their conference this year as well, an important step to ensuring equal and full inclusion of peoiple with dementia, most who are no longer working due to the disease, or the stigma and discrimiantion dementia brings with it.

We ask that you please consider attending this very important conference, which is only held every two years.

‘Tackling Dementia – It’s Everybody’s Business’ is the premier conference focused on dementia in New Zealand.

The Conference is an opportunity to engage in a multi-sector conversation on how services for people with dementia can be transformed to reflect a world of more choice, flexibility and quick access to support; and to harness the best insights and knowledge from a range of sectors that can all help New Zealand meet the dementia challenge.

Abstracts are up to 250 words in length and if accepted, will be followed up with an oral presentation at this exciting conference.

Submissions close on Friday 22nd June 2018, and acceptance/non-acceptance will be advised by Monday 9th July 2018.

Abstract themes

We invite abstracts reflecting the programme themes:

  • Peer services – people living with dementia supporting themselves and each other
    Includes services delivered by and for people living with dementia

  • Citizenship and rights for people with dementia
    Includes dementia friendly programmes, services and standards, the review of the Convention on the Rights of Persons with Disabilities, and supported decision making

  • Effectiveness – the evidence for the right things to do
    Includes therapeutic interventions, the role of service navigation, the lived experience of dementia, biomedical developments and delivery models

  • Innovations – from the margins to the centre: New ideas and thinking
    Includes anything and everything that has the potential to transform the way we experience dementia

One of our blogs from 2015 provides guidelines on attending conferences, especially on how to write and submit an abstract, which you can read here...

If you need any assistance, please do not hesitate to contact us by email.

Mary-Beth Wighton speaks…

As promised yesterday, todays blog is of Mary-Beth ((MB) Wightons brilliant speech at the Canadian National Dementia Conference in May. Thanks to MB for advocating for us all. We are all very proud of you, and your amazing partner Dawn, and everything you are all doing in Canada.  Congratulations again for your selection onto the Ministerial DementiaAdvisory Group. You can read Mary-Beths full speech below.

Journey through the continuum of care and the healthcare system from the perspective of a person living with dementia.

I never would have imagined that at the young age of 45 I would be diagnosed with dementia.

Unbeknownst to me, my dementia journey started 4 years earlier with an initial appointment with my family doctor for memory problems and other symptoms.

My GP did an excellent job of referring me to specialists who could possibly provide insight. After a plethora of tests, doctors, and diagnosis’s including Conversion Disorder and PTSD, it would be a gerontologist who would provide the life-altering diagnosis of probable frontotemporal dementia.

The Assessment Process within my care pathway was riddled with anxiety, confusion, long-wait times, and an overwhelming lack of understanding of the next steps of care.

The diagnostic disclosure was abrupt, insensitive and simply lacked compassion.  Like hundreds of thousands of other Canadians with dementia, I was told to go home and get my affairs in order.

After weeks of waiting, we would then move into my postdiagnosis support.  The local Alzheimer Society and Community Care would sit down with my partner, Dawn, and me. We were introduced to a definition called Early-Onset.  Other than that, little support was provided in terms of appropriate education and resources.

Unlike most people living with dementia, young-onset has its own additional challenges that our healthcare system is struggling to address.  At the age of 45, my financial support to my family drastically was reduced.  Dawn, who was 39, was told she would be my primary care giver with the expectation that our daughter, who was just 17, would also be expected to contribute in care.  Dawn is expected to do this without pay and at the cost of her own career and life choices.

And through most consultations and meetings, the focus has been on my inabilities, and the stress and heartache that I will bring to my family and friends.

Stigma is drippingfrom the Canadian healthcare system and it is combined with a lack of appropriate education for all parties.

I’m worried what the next stages of my continuum of care will bring.  The fragmented care pathways and healthcare systems I experience, cannot exist.

Thank you.

 

Day 5 of the 71st World Health Assembly

Photo source: Kate Swaffer

To say it has been a busy and at times overwhelming or exciting week, is quite the understatement. Even DAI’s Back Up Brain (also my husband Peter Watt, and my B.U.B. as well) has been attending sessions on our behalf, as some I felt were of interest or benefit to DAI and our members were on at the same time I was at something else.

Peter is not a ‘conference groupie’ by nature and even dislikes the idea of institutionalised education, so taking notes, and attending some of these events, was probably not on his #BucketList (!!!), and I have no doubt he may have found many of them mildly boring and certainly very tedious for him… But he did it, for the rest of humanity!!!  😉

The image above is from one of the signs walking into the Palais de Nations (United Nations), all focused on human rights. I think this one applies well to DAI, as we are one, especially when we work together as a TEAM. When we do that, our impact is much stronger, and our 2018 Board and Action group members this year are an incredible team.

I’m TRULY proud and honoured to walk beside them all, and work for, and stand beside all of our members.

But back to the 71st WHA….

In truth, some of the sessions I attended were not only a tad boring, they were repetitious, and often had the same speakers from a previous session, sometimes even giving exactly the same speeches.

For now what I am adding for Day 5 of the WHA, is one great quote, as it is very relevant to what we do at Dementia Alliance International, plus the exact speech from yesterday, and a video of interest.

After the session late yesterday, Human Rights in Global Health: Rights-Based Governance for a Gobalizing World, I wanted to share this quote from one of the presenters, lawyer Ms Alica Ely Yamin, who is the Program Director, Health and Human Rights Initiative, from the O’Neill Institute for National and Global Health Law, made during the Q&A ater the speakers:

“It is the people who are affected by an illness or condition who MUST TAKE THE POWER, not the Bureaucrats.”

This is exactly what members of DAI have done, and the world is still getting used to it.

Hence, we will persist, we will continue to co-operate and collaborate and work together, and we will continue on until we make the change we not only want, but that we all have an absolute basic human right to.

It would take too long to write up the notes for all the sessions we attended Peter and I have attended between us, so I’ve simply added the exact speech I made yesterday, reduced to less than one minute as requested by the Chair, on Palliative care for all, including people with dementia. As mentioned in yesterdays blog, I was technically representing The World Palliative Care Alliance. This is what I said:

None of us in this room want to suffer* ourselves or see our friends and family suffer because of a lack of palliative care for ​conditions such as cancer, dementia, COPD and heart disease when cure is not possible. Palliative care is a fundamental part of Universal Health Coverage and the continuum of care for people living with non-communicable diseases. Take if from someone living with dementia, let’s make the cost effective essential package of palliative care available to those who need it.

*The use of the word suffer used in this speech, is not referring to the lied experince of dementia, but rather, to the suffering caused by the lack of access to palliative care.

I think many of you may also enjoy this video on my personal blog, based on  a presentation I gave in Brisbane on May 10, 2018, also very relevant to the World Health Assembly this week!

Kate Swaffer, DAI Chair, CEO & Co-founder

Day 2 World Health Assembly #WHA71

It seems I may have implied I would write a blog for every day of the World Health Assembly this week, to report to members and others what has been happening in Geneva. Of course, this is quite an undertaking, considering the length of the days and the energy it takes to get through them, and to write a blog. But, I am attempting to live up to my promise!

The Alzheimer’s Society UK has renamed it’s annual awareness raising week to Dementia Action Week, and it is unusual this year that this coincides with the 71st World Health Assembly and the 70th birthday of the World Health Organisation, almost blurring the topics on which to write about.

But of course, we all want Action.

We, meaning those of us diagnosed with dementia, have been waiting for ACTION for many years. Perhaps what I am sharing now, will lead to real action, for all people with any type of disability, including those caused by dementia.

Hence, this blog is not about reporting on the sessions I have been attending or involved in today specific to Day 2 of the 71st World Health Assembly, which I had promised, but rather, to report on a new venture, that DAI has been involved in, and is now a key part of.

For me personally, as I have been advocating for rehabilitation for dementia for many long years, it felt like the best day of the last 10 years of my life, since my diagnosis at the age of 49!

This new Association, The Global Rehabilitation Alliance  was born from the meeting in Geneva which I attended representing DAI in February 2017, REHABILITATION 2030: A CALL TO ACTION,  and the work and global collaboration since this forum.

Many do not yet believe rehabilitation and dementia go in the same sentence, including many rehabilitation specialists, in spite of there being very good evidence for it as far back as 2008 (possibly further, but my energy to research this any more is low!).  

The participants of the Rehabilitation 2030 meeting in 2017 committed to strengthening health and social systems to deliver rehabilitation services.  Strong global advocacy will be vital to the successful implementation of this goal, and this new group hopes to do just that.

Historically, however, rehabilitation stakeholders have been fragmented and lacked a unifying platform for strong and consistent messaging and collaboration. The Alliance aims to fill this critical gap, bringing together motivated and committed stakeholders across disciplines and spheres of influence towards a common vision. 

 The Global Rehabilitation Alliance Vision Statement:

The Alliance envisions a world where every person has access to timely, quality and user-centred rehabilitation services.

Dementia Alliance International is now a founding member of this new Association, and together, we now have an opportunity to influnce key staeholders in the value of rehabilitatin for all people with dementia. I don’t currently have the full list of the 14 founding member organisations, but it includes the World Federation for NeuroRehabilitation (WFNR), World Federation of Chiropractic (WFC), the International Society for Prosthetics and Orthotics (ISPO), the ICRC MoveAbility Foundation,  Humanity & Inclusion (HII), the World Confederation of Physical Therapy, the  Global Alliance for Muscoloskeletal Health (GMusc), and DAI!

DAI is in a unique position to ensure people with dementia are afforded the same rights to rehabilitation as all others, and can now very loudly demand rehabilitation in National Dementia Strategies or Plans, and Clinical Dementia Guidelines.

I’m sure those without dementia will not really understand the significance of this, but for me and I am sure many others living with dementia who have been denied easily accessible and affordable rehabilitation, it heralds the start of a new era, where people with invisible cognitive and other disabilites due to their dementia will also be incuded in the global push for accessible and affordable rehabilitation for all.

Onwards and upwards, together, fighting for our #Rights4All

Kate Swaffer
Demantia Alliance Inernational
Chair, CEO & Co-founder

 

The group photo below is of the 14 founding organisations, names and all orgnisations to be provided as soon as possible!

 

 

 

DAI supports Canada to develop a National Dementia Plan

 

On May 14-15, 2018, a great number of DAI members, and others with dementia attended the National Dementia Conference, hosted by the Canadian Government. I was privileged to be invited and to give a short speech, and was honoured to be on the same program as Mary-Beth Wighton and Phyllis Fehr.  Their speeches will follow in another blog very soon.

One of the highlights for me was meeting so many of my ‘online’ friends in person, and many of us said goodbye with joy, and tears.

The photo above is of the conference  delegates living with dementia, and the government officials and staff who organised it, including the Canadian Minister of Health, Ginette Petitpas Taylor, MP, who attended on both days.

She is also attending the World health Assembly in Geneva this week (we met in the corridors of the UN), so who knows, I may have an update or even a ‘selfie’ to post here!!!

We are extremely proud to announce here that Mary Beth Wighton, one of the founders of the Ontario Dementia Advocacy Group (ODAG), and current Chair was selected, along with Jim Mann, to be full members of the Ministerial Dementia Advisory Group.

Both are members of DAI as well. We have no doubt they will influence the national plan and if necessary, forcefully ensure it is embedded with rights for all. We congratulate them both, and all people living with dementia in Canada for their passion and drive.

Clearly, the most important elements of any National or Local Dementia Strategy or Plan are our basic human rights.

  • Human rights
  • Disability rights
  • Access to a timely diagnosis
  • Access to care and support that promotes independence
  • A new post diagnositic care pathway or ‘model of care’  that is a blend of health care and disAbility support
  • Rehabilitation assessment and support, at the time of diagnosis, for all people with dementia, including speech pathology
  • Disability assessment and support at the time of diagnosis
  • Access to education and care for our families and care partners
  • Education for everyone working in or impacted by dementia
  • Moving away from any form of chemical or physical restraint
  • National Risk reduction strategies

For me, this includes full support for all people with dementia to attend (any event or conference) financially, to ensure full and equal inclusion and participation, as well as full support for our cognitive and disabilities. This is a legal right, not just a human right.

The following are my speech notes and as my ‘brief’ was rather limiting, I decided to broaden the elements of my speech:

Slide 1: People with deMEntia in Research Ethical Considerations 

Thank you for the invitation to join this conference, and the panel today.

Slide 2: Global Overview of deMEntia

  • 50 million people living with dementia
  • 1 new diagnosis every 3 seconds
  • The cost of dementia is estimated to be 818 billion dollars
  • The majority of care is provided by unpaid family care partners
  • Dementia is the 7thleading cause of death globally
  • In Australia, it is now the leading cause of death in women, and the 2ndleading cause of death of all diseases
  • Dementia disproportionately effects women, in terms of the numbers diagnosed, and the number of unpaid family care partners
  • Stigma, discrimination, the deeply entrenched myths about people with dementia, and the

Overview of DAI, which was launched on January 1, 2014 by 8 people with dementia, including one from Canada:

  • Membership now spans 47 countries
  • The services and support available to members and the broader dementia community is provided free for members, and on an annual budget of less than $50,000 USD – for the first 18 months, DAI was completely self funded
  • We still self fund much of our human rights and global work, including supporting countries with their national dementia plans, such as my trip to Canada
  • Global impact on the WHO Global Dementia Action Plan, human rights and dementia being seen and treated as a disability – before we started advocating, there was little more than rhetoric about rights
  • DAI provides significant information and support to members within their own country Dementia Advisory Groups, such as the Ontario Dementia Advisory Group
  • Our members now need Alzheimer’s Associations and other organisations to partner with us, as Alzheimer’s Disease International has, to complement the services and support they provide

Slide 3: Living with deMEntia

When I was diagnosed in 2008 at the age of 49, the advice I was given was to go home, give up work, give up study, get my end of life affairs in order, and to get acquainted with aged care

The challenges of a diagnosis of deMEntia in 2018 are much the same! Most new members of DAI and others I meet with dementia around the world tell me nothing has changed. Both Mary-Beth and Phyllis have told us this was true for them as well.

Human rights and deMEntia

  • It is a breach of our most basic human rights not to be supported to live as positively as possible with dementia
  • It is no different our care partners and families receive little or no support
  • It is a breach of our human rights not to be provided with post diagnostic support that includes rehabilitation, including speech pathology when we are first diagnosed for speech and language impairments, not at the end of life when we can’t swallow and are almost ready to die
  • The WHO states dementia is the leading cause of death and disability in older people – yet so far, service providers and health care professionals do not actively support our disabilities with strategies to maintain independence for as long as possible
  • As a mature age student at a university when diagnosed, I was proactively supported to keep living my life, with proactive disability support, as my children would have been if they were living with any type of disability
  • It is imperative there is nothing about us, without us; including in research

I trademarked what happened to me 10 years ago as Prescribed Disengagement®. Unfortunately, I have hundreds of examples of anecdotal evidence this is still happening to the majority of people after diagnosis today.

It is a human rights issue that must be addressed in all national dementia plans and strategies, in the provision of health care, and in policies and services. I was the first person with dementia to speak as an invited keynote speaker at the WHO, which is a specialised agency of the United Nations in March 2015. Since then, much has happened, including the unanimous adoption of the WHO Global Dementia Action Plan: A Public Health response to dementia 2017-2015. The only truly accountable section of this Global Dementia Action Plan, adopted at the WHA in May 2017 are the cross cutting principles. I personally believe Taiwan has led the way; Canada could be next, if you get it right now.

Redefining responses to deMEntia

  • Janssen Pharmaceutical developed the term BPSD, and funded the first guidelines; they invested a lot of time and money promoting this through clinicians and researchers
  • This paradigm has likely caused worse care, ensure we do not provide person centred care, and resulted in chemical and restraints being used to manage the responses to dementia or responses to poor care that people with dementia express

Slide 4: Human Rights, Research & deMEntia

Ethical considerations of involving people with deMEntia in research clearly include causing no harm to research participants. Historically, research was done about us, through our care partners, unless it was pure scientific research for a cure or a disease-modifying drug. It is still very difficult to get ethics approvals when including people with dementia I research, which I know from personal experience as a ‘young’ researcher.

For example, in an Annual Report on stigma published in 2012, only 7% of people with dementia were included in the research participant cohort – the rest were families, hence this report does not report on the stigma we feel, but what other believe we experience, which is significantly biased by their own suffering.

Managing the gate-keepers continues t be a challenge, as the paternalistic views about us, and the subconscious beliefs and attitudes about us not having capacity or sufficient cognitive ability to be involved in society, let alone in research, is endemic. Even today, most decisions made for or about us, are deeply influenced by people without dementia. In my role as the Chair and CEO of Dementia Alliance International, I can tell yo we receive on average, 5 requests per week from researchers to engage with our members, as they cannot get either the family members to agree to involve us, or the advocacy organisations to share the opportunities for participatory research.

The wellbeing of research participants with deMEntia should be important to everyone, and especially if a trial ends or fails, no care is provided post trial for the research participants. DAI members report that when a trial is either stopped, or comes to an end, they are ‘dropped like hot pancakes’. This is unethical, and could be seen as a human rights issue as well.

People become involved in trials, not only in the hope of finding a cure for themselves, but for future generations. Research for a cure, but even more so for better care, and for risk reduction or slowing the progression of dementia are of great interest to most people currently diagnosed. We need to be supported emotional, physically and financially to be involved in research, and we need research opportunities made publicly available to us. We also need pharmaceutical companies and the media to stop selling false hope!

Involving people with deMEntia in National Dementia Plans and Strategies

Finally, in everything you do, I implore you to SEE THE PERSON, NOT ONLY THE DEMENTIA. We are human beings, with a condition causing changing capacity and functional disabilities.

Given the right support, and equal opportunities to all other persons with an acquired disability, we have a lot to contribute, not only to research, but also to society as a whole.

Thank you.

Kate Swaffer, DAI Chair, CEO & Co-founder

My slides can be downloaded here: Kate Swaffer_National Dementia Conference_Canada_May_2018

 

 

DAI in Top 20 Dementia YouTube Channels in 2018

Dementia Youtube Channels List.

“The Best Dementia Youtube Channels from thousands of Dementia Youtube Channels in our index using search and social metrics. We’ve carefully selected these youtubers because they are actively working to educate, inspire, and empower their audience with frequent updates and high-quality videos.

This is the most comprehensive list of best Dementia Youtube Channels on the internet and I’m honoured to have you as part of this! I personally give you a high-five and want to thank you for your contribution to this world.

These Youtube Channels are ranked based on following criteria

  • Total youtube channels subscribers, video views, and video uploads
  • Quality and consistency of videos
  • Youtube search ranking
  • Feedspot editorial team’ objective and subjective review”

DAI received an email yesterday announcing we had  made the Top Dementia Youtube Channel list for 2018.

Firstly, SINCERE CONGRATULATIONS to every other youtuber who has made this Top Dementia Youtube Channels list!

We are very proud to have made this list. Without the generosity of so many supporters, academics and professionals, willing to present to our members and supporters at monthly Webinars, and our members always willing to share their stories and presentations, we could not provide the truly authentic content we have on our YouTube channel.

The most impactful voices in the global activism for dementia and rights at places like the WHO and UN, has been the voices of people with dementia, most often through DAI.  DAI started the global activism and campaign in March 2015 at the WHO First Ministerial Conference on Dementia in Geneva.

Our YouTube channel has also contributed to our work, and to supporting so many others facing dementia, or academics and proessionals working in the field. If our YouTube Channel has positivley impacted your life or work, please consider donating.

Thanks to everyone from all of our members for helping us get to where we are today, and for making this award possible.

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)

The economic and human cost of dementia

There is no doubt there is an enormous economic cost to dementia, not only to the person diagnosed, but also to their care partners, families and support persons (if they are lucky enough to have any), and to the health care sector and our governments. Our latest graphic clearly highlights this, and is based on data from the World Health Organisation (WHO) website published last year.

Apart from the economic cost of dementia, there is a significant human cost to this disease, and you can find many blogs, published journal articles, media stories (print and digital) and books on this, written by professionals, academics, care partners and yes, even many people with dementia.

Too often, the person is not seen, and only the symptoms are. Our deficits are focused on, and we don’t receive appropriate disability support nor recognition for the assets we have retained. These are often completely ignored. It is why we also campaign globally for our human rights for better support and services. We must also be supported to live more positively with dementia, from the time of diagnosis.

One of DAI’s goal is to empower other people with dementia to live more positively with it, and as such, try and reduce some of the human cost of dementia. In doing this, we promote engagement, peer-to-peer support and participation at events and educational webinars, albeit mostly online, for our members and also for the wider dementia community.

Most of our members, when they first join DAI have been advised to get their end of life affairs in order, and often, even to choose a respite day care centre and nursing home. When that happens, most people (and our families) spiral into a dark and depressing place, and become fearful and afraid of what lies ahead.

Jerry Wylie, our Vice Chair made a plea on Facebook on March 31, 1:30 PM, as follows:

“Will you take the time to read this to the end? It’s is not about me and never will be…. I wake up every day praying, that what I managed to do yesterday might make a difference in the “lived experience” for the “people” being diagnosed with dementia today and tomorrow.

Globally there is:

  • 1 diagnosis Every 3 seconds
  • 1,200 “people” diagnosed Every hour
  • 28,800 “people” diagnosed Every Day
  • 876,000 “people” diagnosed Every Month
  • 10,512,000 million “people” diagnosed Every Year

Unfortunately, “people”, society and governments seem callous and unwilling to support simple, cost effective improvements to our “lived experience”.

They prefer spending Billions upon Billions every year on finding a magic cure, whilst the largest pharmaceutical companies in the world have abandoned research due to their failure to get positive results.

In the meantime, nearly nothing beyond lip service is being done or invested in what actually helps us that are diagnosed.

The result is Needless & Unnecessary suffering for countless millions of “people”.

Dementia Alliance International “goes beyond lip service” and is changing “peoples” lived experience every single day but, nobody seems to want to help us financially. I guess it’s because we all have Dementia?

I imagine nearly every person who took the time to read this post can afford to donate “$10.00 A MONTH” so we can reach and offer weekly peer to peer support to the 10,500,000 million “people” diagnosed every year.

Here is your opportunity to help us help these people! Please click on this link and give as generously as you may. If you don’t, who will? $10.00 per month.”

THANK YOU JERRY FOR OPENING YOUR HEART TO US ALL

ADI Chicago abstracts due soon

If you are thinking of submitting an abstract to attend the ADI 2018 conference in Chicago, abstract submissions close very soon. If you are unsure about presenting at conferences, or writing an abstract, please go to our blog which has some guidelines about the process here…

DAI does hope to be hosting its regular 90 minute workshop again as well.

The ADI Abstract submission is open. ADI welcomes scientific and non-scientific abstracts on a range of research, care, technology and innovation topics. Please see below for the list of abstract topics and further guidance before submitting. To facilitate abstract submission for people with dementia, we have also created a paper submission form. If you would prefer to submit in this way, please contact Katie Bingham at [email protected] to request the form.

Alternately, contact us at [email protected] and we are happy to assist you with preparing and submitting our abstract.

Abstract topics

  • Awareness and stigma
  • Carer support and training
  • Dementia friendly communities
  • Dementia policies and public policy initiatives
  • Diagnosis and imaging
  • Diverse populations – inclusion and equality
  • Education and training of the workforce
  • End of life care
  • Engaging people living with dementia and care partners
  • Environment and technology
  • Epidemiology
  • Mild cognitive impairment (MCI)
  • Models of care
  • Prevention (risk reduction and risk factors)
  • Psychosocial interventions
  • Rights of people with dementia
  • Technology, innovation and entrepreneurship
  • Treatments and clinical trials
  • Well-being and quality of life
  • Younger onset dementia

Of, By, and For People with Dementia

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