Category Archives: Alzheimer’s Disease International

Hello, my name is Jennnifer Bute

On day nine of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of living well with dementia. Thank you Jennifer for allowing DAI to publish this during September to help us raise awareness of dementia, and the fact that so many people can live positively with it.

Jennifer has represented DAI twice this year, giving presentions at the ADI Alzheimer’s University in London, and the photo we have added here was taken last week. See this tweet thread to read how well her presentation was received.

A Glorious Opportunity

Image source: ADI 2018

Dr Jennifer Bute, Fellow of the Royal College of General Physicians, lives in Somerset in a Dementia friendly village.

Jennifer worked in Africa as a Doctor before working as a GP for 25 years also training medical students and Doctors. She resigned as a GP 12 years ago as she knew things were not right and was diagnosed 9 years ago with Alzheimer’s Dementia. This is her story.

I now know illness can precipitate dementia but I did not realise that in August 2004 when I had a ‘mini stroke’ I lost the use of my left arm and was sent to the TIA clinic. I continued working but began to get seriously lost when visiting patients so I just bought a satnav eventually needing it to find my way to our branch surgery or even to get home.

In January 2005 I had a bizarre episode when I did not know what to do with my shopping in the supermarket and this alarmed me sufficiently to return to my GP who referred me to a neurologist who said there was nothing the matter with me implying  I was attention seeking when I said I did not recognise friends and neighbours . I decided to find more ways to cover up problems and remain safe. Later I had a gas leak check done on our house and the drains checked at work not realising I was having olfactory hallucinations. I could no longer lecture from memory so I started using Power Point Presentations to help.

My defining moment came at the end of 2005 when I was chairing an important Case conference at work, I did not recognise colleagues I had known for 20 years and persisted asking them who they were and why they were there. So in 2006 I agreed to see a 2nd neurologist who was surprised I had had no investigations. The neuropsychology consultant said I did indeed have problems and was not sure I was or would remain safe professionally My patients and high standards were paramount so I resigned. The neurologist said the abnormal results were of no significance.

By January 2008, I developed auditory/visual hallucinations hearing children screaming babies crying and was seen conducting conversations with non-present people I wrote myself detailed instructions on how to make a cup of tea, put washing powder in the washing machine I would have to be reminded to cook meals and might cook supper twice on the same day. One day I did not recognise my husband. I knew I had dementia.

In 2009 the 2nd neurologist was very annoyed I had resigned from work. I could no longer read easily and when the insurance company spoke to me on the phone I thought they were speaking Chinese. I had another neuropsychological assessment and it was such a relief when it was explained I used non verbal and contextual clues to work things out my intelligence enabled me to cover up and was sent to Peter Garrad whom I found on the internet had done work on Iris Murdoch and Harold Wilson so when he told me in 2009 I had Younger Onset Alzheimer’s I was just so relieved.

He started me on Aricept which caused terrible nightmares but we found ways of coping and later Memantine, within 3 months my family were amazed at my improvement I am able to talk (unless tired) most of my hallucinations went. Although they have now returned and often shake my sense of reality However I passionately believe there are ways round problems and we can even reverse some of the decline.

I have started a memory group for folk where I live based on the Japanese model of using the three R’s (Reading Writing and Arithmetic) with amazing results.

The spiritual never dies I have no fear of the future I know exactly what lies ahead.

For me my Dementia is an unexpected gift, a wonderful opportunity and great privilege.

My husband was a great supporter until he died unexpectedly 7 years ago but I have a wonderful family, 3 married children in various parts of the world My networked computer is my back up brain I can’t manage the phone but I can do emails and Facebook as they have visual clues.

My father had dementia so I understand a carers perspective too Where I now live there are many who walk this path and I am always learning and finding new ways to also help others cope.  My son  set up my website gloriousopportunity.org and makes my educative films which are all available there to anyone.

There are no rainbows without rain!

Jennifer Bute © 2018

Please make a donation to DAI, so we can continue to support members like Jennifer.

Hello, my name is Carol Fordyce

On day seven of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of living with dementia. Thank you Carol for writing your very first blog for DAI for this series to help us raise awareness. You and your husband Brian are an inspiration to us all.

This is me… Getting on with life!

Carol and Brian Fordyce

Hello, my name is Carol and I am aged 61. I was diagnosed with Younger Onset Alzheimer’s Disease in December 2015. 

I had various problems and issues for over twenty years, which began in my mid thirties.

When I received my diagnosis it was therefore not such a dreadful thing, but a huge relief that there was actually a valid reason for what was going on.

I could now understand and deal with this new life. I could seek further help and advice, read up on literature and ask questions to know what this thing is and how to deal with it.

From this moment on I could plan my life around my dementia, and put in place strategies to help me cope with the symptoms. The one amazing thing to come out of this was a personality change, which turned me as a person upside down, and actually made me a better person.

I used to be very shy, quiet and introvert. From a very early age I can remember being painfully shy, I would never speak out at school, make friends or speak out about anything. If I did, I would be ridiculed and laughed at. It was a very difficult time and one I choose to forget.

But now, since my dementia, I am outgoing, make many new friends and speak at conferences, meetings and anything really that comes up. I write poetry, stories and try new things all the time.

This is the new me, and I must say, I love the new me and all that has come with it, other than the dementia of course. But without that I would still be the old me.

I have a wonderful husband, Brian, who is also my carer. He is amazing in all that he does for me. At first, yes we had problems. He would try to do things for me rather than help me to do them. We had a few minor arguments and he eventually asked how I would like him to help. We had a great discussion and things got sorted. Now we make a fantastic pair. I ask for help when I need it and Brian watches me covertly to see if I am struggling. He will often offer his help, other times he just watches and makes sure I am ok and most importantly safe.

Without Brian in my life I dare say I would slide down that slippery slope would not achieve what I do, I would not faster than Sonic the Hedgehog on ice.

So, this is me, with my dementia, and my wonderful husband Brian, getting on with life to the best of our abilities.

We have a great life even with DEMENTIA. You can too.

Carol Fordyce © 2018

Please consider making a donation to DAI, so that DAI can continue to support members like Carol

DAI in Chicago #1

Many of DAI’s members were in Chicago this year for ADI’s longest running international Conference on dementia.

We are proud of all of our members who presented at the conference, whether as invited Plenary speakers, as part of DAI’s panel session or in the concurrent sessions.

Everyone did a truly amazing job.

Or, like one of DAI’s co founders, John Sandblom, who presented in the Opening Ceremony! Our blog today is of Johns speech, and we thank him for representing us all so very well.

Johns speech notes are available to read below, although he did also ad lib quite a lot!

His slides are available here…

Improving quality of life for people with dementia

Slide one: Thanks to ADI for the invitation to be part of the opening ceremony for their 33rdInternational conference, and for sponsoring our stand in the Exhibition Hall. Thanks also to Alzheimer’s America for co-hosting the event.  When I first met Mr Harry Johns, the CEO of Alzheimer’s America, he said, please just call me Harry!

My sincere thanks of behalf of DAI to the Alzheimer’s Association of America for co hosting this event, and thanks also to the LEAD coalition for their sponsorship supporting our members to attend. Special thanks also to DAI members for their hard work in fundraising for us all to be able to attend this event.

As one of eight co founders of DAI, I am honoured to represent our members today, and to have been invited to speak.

DAI is an organisation which now focuses on many things, but our primary focus is on improving the quality of life for people with dementia and their families, and advocating for them globally for the realisatin of our human rights.

Slide two: This slide is one of DAI’s graphics, and is a global overview of dementia – based on data from ADI’s World Alzheimer’s Report in 2015, and the data on the WHO website this year.

Slide three: Dementia Alliance International is the global voice of dementia, and is a registered non-profit organisation whose membership is exclusively for people with a confirmed diagnosis of any type of a dementia, whose membership is now represented in 47 countries.

We seek to represent, support, and educate others living with the disease, and the wider dementia community. DAI is an organization that strives to provide a unified voice of strength, advocacy and support in the fight for individual autonomy, full and equal inclusion and improved quality of life, empowering people to live with dementia, not only die from it.

DAI has been in a strategic partnership with ADI since 2015, and we thank them for their ongoing support.

Slide four: The power of what DAI does is enormous and it helps improve the quality of life for  our members.

Slide five: DAI is very proud to it’s YouTube channel was listed in the top 20 dementia channels in2018.

Then briefly discuss how these platforms support our members through global online conversations

Slide six: DAI has made their global focus about campaigning for human rights and access to the CRPD at organisations such as the United Nations, Convention of the State Parties on the Convention of the Rights of Persons with Disabilities and the World Health Organisation.

Our mission is to empower people with dementia to live more positively with dementia, and to demand quality health care and disability rights. To fulfil this mission, we work with governments, other organisations and individual members of civil society to create change in programs, practices and policies that affect people with dementia and their families, now and into the future.

It is imperative there is NOTHING ABOUT US WITHOUT UT, and this is our undisputed HUMAN RIGHT.

Slide seven: DAI wishes everyone a successful and enjoyable conference.

Thank you.

John Sandblom
Co-founder, Board member and Treasurer
Dementia Alliance International

‘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.

DAI supports self-advocacy in Singapore

One of the things DAI has been doing globally for some time now, is supporting countries where traditionally, people with dementia rarely, if ever,  speak out publicly about their disease. This was the case when DAI’s CEO and Chair Kate Swaffer spent a few days working in Singapore last year, actively supporting the Alzheimer’s Disease Association there, also a member of our strategic partner, Alzheimer’s Disease International.

As a ‘patient’ global advocacy and online support organisation, DAI works hard to help other advocacy organisations to bring dementia out of the shadows, and to support countries to empower self advocates to work with. Working together, we can and will change this world, and ensure a better life for all people with dementia, and their families.

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https://video.toggle.sg/en/video/series/talking-point-2018/ep7/606267

Day 4 World Health Assembly #WHA71

This blog outlines the presentation being given in Committee Room A at th Palais de Nations on Day 4 of the Seventy First World Health Assembly in Geneva. Many members waited and watched patiently to watch it yesterday, which tehnically is a statement to support the Worldwide Hospice Palliative Care Alliance, but as the agenda is very ‘fluid’ here, a bit like Parliamentary sittings, it was moved to today.

DAI is working with this organisation, to ensure Palliative Care is provided for all people ith dementia, even though currently, globally, only 10% of ALL people requiring palliative care receive it. I am a member of their direct stakeholder committee, working on a project around strengthening the voice of direct stakeholders. It is wonderful peole with dementia are now being invited to be involved in working on so many different topics, all of which effect them directly.

When my father in law was dying in the later stages of Lewy Body Dementia, in a Long Term Care facility, he was denied palliative care, due to his age, but more specifically, due to having dementia. It was not only a breach of his human right to end of life care, it was devastating for those of us how loved him, watching on from the sidelines. It was once even taught, and believed that people with dementia did not feel pain!! So, presenting on Palliative care for all, is important.

My speech notes, prepared primarily by the Executive Director of
Worldwide Hospice Palliative Care Alliance, Stephen Connor, for the Session on the Non Communicable Diseases and High Level Meeting in New York is outlined below. However, we have just been advised we may not come up on the Agenda until late this evening, if at all!

Dear Chair:

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. Avoidable suffering of people with non-communicable diseases can be addressed through an extremely cost-effective package of palliative care as outlined in the Lancet Commission on Palliative Care and Pain Relief. This package costs as a little as $3 per capita in low and middle income countries. The UN General Assembly on Non-Communicable Diseases is an opportunity to revisit how well we have done in building access to these essential, and often neglected, services as outlined in the Global Action Plan and the monitoring and evaluation framework. In addition, we should look forward to ensuring an essential package of palliative care to reduce suffering, improve outcomes and increase health system efficiencies. Palliative care is a universal issue that affects all of us at some point. The availability of palliative care could be an indicator for the strength of a health system – which seeks not only to reduce the presence of disease but also in line with the principles of WHO’s constitution – to ensure physical, mental and social well-being – even when conditions cannot be cured. Take if from someone living with dementia, let’s make the cost effective essential package of palliative care available to those who need it.

Thank you,

Kate Swaffer

On Behalf of Worldwide Hospice Palliative Care Alliance

Footnote: *The use of the word suffer or suffering 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.

 

 

The positive impact of DAI

Kate Swaffer gives her keynote presentation at the WHO Ministerial Conference on Global Action Against Dementia, Geneva. Tuesday 17 March 2015. Photo by Violaine Martin.

Dementia Alliance International is the peak body for, and the global voice of people with dementia, with members from 47 countries, starting with only eight co-founders in 2014 from three countries.

As we head into next week, where as Chair & CEO I am again representing DAI at the World Health Organisations  Seventy First World Health Assembly, it is useful to be reminded of where DAI started, and the impact DAI has had, and continues to have on its members and on the world.

The World Health Organization (WHO) is a specialized agency of the United Nations concerned with international public health, and  is a member of the United Nations Development Group.

Whilst others spoke or wrote about human rights for people with dementia before March 2015, it was in Geneva in March 2015 when as DAI’s then Co-Chair, and as an invited speaker, I gave a keynote speech on Day 2 of the WHO First Minsiterial Conference on Dementia.  It included human rights and the CRPD in my three demands, and this seems to have had a snowball effect of ensuring the whole global dementia community has moved further away from rhetoric to more tangible action.

Action is important, especially as the United Kingdom has rebranded their Dementia Awareness Week to Dementia Action Week this coming week.

The eight co founders of DAI had high aspirations; they wanted to advocate for, but more especially to empower others with dementia to become self advocates, and to live more positively in spite of dementia, not only advocate for themselves.

Thankfully, many more people are active as advocates today, than when DAI started, and often we are told it is because of having been a member of DAI, and finding out there is still a good life to be lived, alongside of, or even in spite of dementia. It is  a different life than the one we imagined before dmentia, but it is still possible to live positively and contribute in meaningful ways to society. That is, in fact, our basic human right.

One great example of DAI’s positive impact is Mary Radnofsky from the USA, who has become very active since being empowered initially through joining DAI, to ‘live her own life again’. In August 2016, she wrote, “… I was reminded of how much you turned my life around when I first met you.”

Through her involvement with DAI activities, such as being funded in 2016 to represent DAI at two events, one in New York where she read out a three minute DAI statement, and the other the Social Forum in Geneva,  both funded by DAI to represent us all. She was also funded by DAI to attend two International conferences (ADI Budapest and Alzeimer’s New Zealand), she has found a renewed purpose.

It was initially through attending DAI’s weekly online support groups, and a lot of one to one mentoring and support that Mary became so actively involved with living again. She has since moved on to other missions and organisations, but it is exhilerating to see her, and so many others living positive and active lives again.

Many, like Mary, have been ‘kickstarted’ to reclaim living their own lives again, albeit often with new directions and purpose since their diagnosis of dementia, but largely due to joining DAI. Our peer to peer support groups are very powerful in healing, in helping us make sense of dementia. Finding support from other like minded people, facing the same disaease or situation is empowering.

Mary once wrote in an email to me (3 September 2016) stating, “I may not be an old friend yet, but you’re the most important new friend to me”, and she again wrote to me (30 October 2016) after attending the Social Forum at the WHO in 2016:

I hope that your readership will benefit in many ways, since we wish to share the knowledge we gained from participating in the UN Social Forum as representatives of Dementia Alliance International. This was an unprecedented (and exciting!) opportunity to be part of a global attempt to improve the lives of people with dementia.

Such is the impact of DAI; empowering  others to reclaim their own lives.

Most of all, DAI teaches others that they can ‘live with dementia, and do not need to just go home and wait to die from it’, as so many are still being advised to do.

We may not all stay in close contact forever after getting to know each other through DAI, but that is human nature.

DAI is proud of where it started, and what it has achieved in the last  four years and almost five months, but we are also often exhausted. As an organisation, we have made a significant impact globally for a human rights based approach to dementia that includes disability rights, including rehabilitation, and for recognition and full access to the CRPD, CBR and SDG’s.

Our current 2018 board and Action Group is hard at work, making an incredible commitment to all of our members and the global dementia community, and I thank them all, on everyone’s behalf.

I’m planning to publish a daily blog throughout the Seventy First World health Assembly this week, to keep you all up to date.

Kate Swaffer, DAI Chair, CEO & Co-founder

REMINDER:

For new DAI members or supporters, we highlight the DAI sevices and activities below. DAI is run by people with dementia, for people with dementia, with very limited funds, operating from an annual budget of less than $50,000 per annum, and still without any paid staff.

Free services for members include:

  • Free membership
  • Weekly online peer-to-peer support groups
  • Buddying/mentoring of individual members as members are available
  • Online discussion forums
  • Support groups for people with more advanced forms of Aphasia, as requested
  • A monthly online Cafe Le Brain and Open members meeting and monthly webinar
  • Opportunties to get involved though our Action Group
  • Support to write and submit abstracts, to attend conferences
  • Bursaries to attend selected events, as fund raising permits

Services for members and the global dementia community of care partners, academics and professionals:

DAI ROCKS FOR DEMENTIA #WRAD2018

This year is the third year the event known as the World Rocks Against Dementia is taking place, and with some thinking outside of the box, DAI has decided to join the fun, and host an event that is also our first official event fundraiser.

About our event: DAI ‘s vision is that all people with dementia are valued and included. We also have a strong philosophy that working together makes us all stronger, and by doing so, we can and will achieve more. Although we have highlighted and promoted the “World Rocks Against Dementia” (WRAD) events in previous years, we have not previously thought of hosting a WRAD event.

In what we have called within the leadership and action group teams, a ‘moment of random craziness’, we are hosting an online WRAD event this year…

We don’t have a fully finalised program yet, but please know it will be fun. We have some live performances (yes, via Zoom), and some pre-recorded performances, with time to chat and even ask questions about what is it like living with dementia along the way.

From Kate Swaffer suggesting having an online WRAD event, our Board and Action group members then believing is was ‘do-able’ in such a short time frame, awe staryted reaching out to members and musicians.  Kate reaching out to Dr Al Power with a random request to be involved, then Al suggesting another jazz musician Dani Greenwood, has definitely started the ball rolling.

DAI members are also involved, and one of DAI’s members Graeme Atkins from Queensland, also a musician, has written and performed many songs about dementia, and is opening and closing the event. Yes, it will be live, on zoom!

If you are a musician with or without dementia, and wanted to perform live via zoom at the even, we’d love you to join us.

To the great credit of the team of organisers of the WRAD2018, Norm MacNamara received personal messages of support from HRH Prince Edward and the UK Prime minister Teresa May to wish everyone good luck and best wishes in what so many people and organisaions are doing in their own WRAD2018 events.

PROGRAM

  • Opening performance by Graeme Atkins on guitar, singing the song he wrote for DAI, “We are Dementia Alliance International”
  • Other performances include but are not limited to:
  • Dr Al Power performing If You Don’t Mind
  • Danielle Greenwood performing Only One
  • Luke Johanson performing The Waltz
  • Lorne Peterson wrote the lyrics, and his brother Glen Peterson performing The simple things in life
  • Kate Swaffer reciting My Disappearing World
  • James McKillop reciting song lyrics he has written about dementia
  • Professor Rhonda Nay reciting song lyrics
  • Closing performance by Graeme Atkins on guitar, singing ‘Al’s Song’……..as in Al Zheimer!

Register here…


About WRAD: Norm McNamara, one of the founders of the Purple Angels wrote for DAI…

This year is the celebration of the third year of the Annual WRAD “World Rocks Against Dementia” event and we are happy to say it’s looking like its becoming the biggest one ever with 17 counties worldwide over no less than 5 continents. Events on or about the 23rd to 25th March 2018 will be held in memory of those we have lost to dementia, those who are LIVING with this disease and their families and loved ones, and of course, not forgetting those yet to be diagnosed. This all started years ago with the help of Wayne Mesker and the Alive foundation who had already invented RAD, Rock Against Dementia. It’s certainly not a Purple Angel idea! But what Wayne and I did between us, was to create a WORLDWIDE event out of it, which is why it’s now called the WORLD ROCKS AGAINST DEMENTIA (WRAD). We work as a team and involve as many of those who want to be involved. YES !! Its true its never really attracted mainstream TV or media but the beauty of it is, it doesn’t have to because this is an event BY THE PEOPLE, FOR THE PEOPLE and every year it gets bigger and bigger and every year it will touch MILLIONS across the globe which proves we don’t need big celebrity names to do something like this, it’s a grassroots event supported by some huge dementia organisations like Alzheimer’s Disease international, Dementia Alliance International, Dementia UK and others.


Friday, March 23, 2018 – times (USA/UK/EU/CA):

  • 2:00 pm San Francisco USA
  • 4:00 pm Des Moines/Chicago USA
  • 5:00 pm New York USA
  • 11:00 am Honolulu
  • 4:30 pm Toronto CA
  • 2:00 pm Vancouver CA
  • 9:00 pm London/Glasgow UK
  • 10:00 pm Paris, Munich, Amsterdam, EU

Saturday, March 24, 2018 – times (AU/NZ/JP/IND/TWN):

  • 7:00 Brisbane
  • 7:30 am Adelaide
  • 8:00 am Sydney/Melbourne/Canberra
  • 5:00 am Perth/Taipei
  • 10:00 am Auckland, NZ

The event runs for up to 1.5 hours.

Check your local time using this link…


COST TO ATTEND:

AS THIS IS A FUNDRAISING EVENT, THERE IS A SMALL FEE TO ATTEND:

  • $10 USD – General entry ticket
  • $50 USD – Donation – this will be used exclusively to support people with dementia to attend ADI CHICAGO 2018
  • OTHER DONATIONS (as you can afford)

WAYS WE USE SOME OF OUR GENERAL REVENUE OR DONATIONS:

  • $US 5.00 covers the average cost of one monthly bank fee
  • $US 50.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 30.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

YOU CAN ALSO DONATE HERE: https://www.dementiaallianceinternational.org/donate/

 

 

 

Let’s all meet in Chicago

All we ask is that you listen to DAI board member Jerry Wylie with an open heart and seriously consider donating to DAI to support his goal. Jerry was diagnosed with dementia aged 62, and is asking for your help. He is working really hard to support people with dementia and their care partners to attend the ADI conference in Chicago in July.

Jerry is asking for your financial help. You can read the full notes from his video below.

Hi, my name is Jerry Wylie, and I’m from a small logging town in Philomath, Oregan (USA). My story is just like millions of others. I was  diagnosed with Lewy Body Dementia at the age of 62. As you probably know, dementia is our 6th leading cause of death in the USA and is number 2 in Australia, and is on a fast track to become number 1 in 30 years.

Every 3 seconds another person  is diagnosed with dementia which means this year there will be almost 11 million cases.  Currently th elives experience immediately after diagnosis can easily be changed, if they will just listen to  us. Here is a couple of my lived experince, and for the record, and for the record, I hear similar stories many times each week.

Minutes after my diagnosis, I asked my neurologist, ‘What can Kathy and I do to help ourselves?

His only response was, ‘We’ll put you on a couple of medications that might help the symptoms.

He failed to mention that because you were just  given a terminal diagnosis you should seek out support, because the rate of suicide is always highest in the first year after diagnosis of any terminal illness.

Sure enough, I fell into very deep one year depression. I became a zombie, I nearly committed suicide and my whole family suffered because of my decline.

And, it would have all been prevented had even one of my doctors handed me a piece of paper referring me to a dementia association and to the support those associations offer.

This travesty is happening every 3 seconds, 11 million times a year, and it needs to change.

Two years I got a new family physican. My wife went in with me to my appointment just as she always does. He started asking questions of me, which is normal, and when I told him I had dementia, he turned his head and continued the conversation with my wife, as if I wasn’t in the room.

In other words, ‘I’m wasting my time talking to you buddy!’

Of course, what my doctor did made me feel completely useless, and is happening every day, and some simple training  can prevent that.

You see, some very simple, easy to make changes in our medical treatment could make an enormous difference in our lived experience, and it will reduce the number of suicides attributed to dementia.

That is only a couple of examples of why we need your financial support in getting our voices heard, by helping us to get to Chicago to attend  the 33rd International Conference of ADI. It is our best shot.

Thank you for listening.

Jerry Wylie.

Donations to DAI can be made by clicking on this link…

Thank you.

 

Thank you Jerry, for sharing your story.

WHO announces Civil Society Working Group

The World Health Organization (WHO) has this week announced the members of the Civil Society Working Group on the third UN HLM on NCDs, comprised of 26 civil society representatives and co-chaired by WHO ADG Dr Svetlana Akselrod and NCDA CEO Katie Dain.  DAI congratulates to Katie Dain, the CEO of the NCD Alliance in her role as co-chair.

WHO Civil Society Working Group on the third High-level Meeting of the UN General Assembly on NCDs

In October 2017, Dr Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization (WHO), announced the establishment of a civil society Working Group for the third High-level Meeting of the UN General Assembly on NCDs in 2018.

The Working Group’s aim is to advise the Director-General on bold and practical recommendations on mobilizing civil society in a meaningful manner to advocate for a highly successful high-level meeting, one which proves to be a tipping point for the NCD and mental health response.

The Working Group will be co-chaired by Katie Dain, CEO, NCD Alliance (NGO), and Svetlana Axelrod, Assistant Director-General for NCDs and Mental Health, WHO. The WHO GCM/NCD Secretariat will act as Secretariat for the Working Group.

NCDs kill 15 million people between the ages of 30 and 69 each year. NCDs particularly affect low- and lower-middle income countries, where almost 50% of premature deaths from these conditions occur.

In 2015, world leaders committed to reduce premature deaths from NCDs by one third by 2030 as part of the Sustainable Development Goals. Recent WHO reports indicate that the world will struggle to meet that target based on the current rate of change and action.”

The Working Group’s aim is to advise the WHO Director-General on practical but also recommendations that include ‘thinking outside of the box’ on mobilising civil society in a meaningful manner to advocate for a successful high-level meeting in New York.

It is pleasing that DAI has been invited to join this committee, and  is being involved in this work, and we thank the WHO for this invitation, and therefore the acknowledgement of our important work.