Tag Archives: Jerry Wylie

Jerry Wylie and the Dementia Warriors #DAM2020

Today was our monthly Cafe Le Brain, and unfortunately for everyone, one of the co hosts’ internet died, so it was a rather disjointed cafe! We had a few topics on the agenda, including with Jerry Wylie’s permission, watching a video made about setting his local support group, called the Dementia Warriors.

Jerry Wylie, USA

Therefore to support those who missed out on the video at our Cafe, for Day 16 of Dementia Awareness Month #DAM2020 #WAM2020, we are not only adding that video here, we are highlighting Jerry’s journey from diagnosis to now, by posting two videos highlighting his incredible advocacy.

The first is a video recording of a presentation he gave at the ADI conference in Chicago in 2018. The second is a video that was made about setting up his local support group. It has been an incredible journey to partlt share with him; from diagnosis, to depression, to renewed purpose.

Thank you Jerry.

We are so glad DAI was the catalyst to help you see there is still a good life to live, in spite of dementia.

Jerry presents at the ADI Conference in Chicago

As a keynote speaker at the ADI Conference in Chicago in 2018, Jerry shared his deeply personal story, which included him sharing how he had been depressed and even suicidal after his diagnosis, and his passion became one of helping to stop other people’s lives being thrown in the bin after their diagnosis like his was!

People who become empowered to live positively and with renewed meaning and purpose is exactly one of the outcomes the original founders of DAI dreamed of. Life is short, so DAI works towards actively supporting people to get back to living their own lives, and also to have fun again.

Jerry Wylie, speaks on founding the Dementia Warriors.

Jerry often said that joining DAI saved his life, and attending a support group over zoom was the first time he had smiled or laughed since his diagnosis. He is now living the his life with true purpose ad passion, and we all applaud and congratulate him for having the tenacity to keep advocating, until this particular dream was achieved.

Well done Jerry, we hope other members may be inspired to follow you, and we are all very proud of what you have achieved, and how you continue to support families facing dementia.

Read the brochure about Jerry’s exciting Dementia Warriors support group.


DAI’s next “A Meeting of The Minds” Webinar: ASK THE EXPERTS:

  • Wednesday, April 25, 2018 (USA/CA/UK/EU)
  • Thursday, April 26, 2018 (AU/NZ/TW/JP)

This event is being hosted by Dementia Alliance International (DAI) and is available online as a Webinar. Although it it set in a number of time zones, it is only ONE event.

Ask our experts:

Lorayne Burgess lives with dementia in the UK, and has been an active advocate in her local area, and now becoming active representing DAI. She will be speaking at the launch of a new OECD report on Dementia in London in May. She is 52 and was diagnosed with FTD 3 years ago aged 48. Life is her hobby and living positively is her goal.

Jerry Wylie is the Vice Chair of DAI, and is very active in his local area in Philomath Oregon in the USA, presenting to organisations, raisign awareness and fundraising for DAI. In July, he commences presenting regular educational sessions to medical students. Jerry is an invited keynote speaker for the ADI Conference in Chicago in July.

Maria Turner and her son Rhys Dalton live in the USA, and will share their experiences of the impact of dementia. Maria, from ger perspective as a younger woman who was working in critical care as a nurse at the time of diagois; Rhys from the perspective of a young man supporting his mother, whilst trying to build up his own career.

Ian Gladstone lives alone with demenita in Adelaide, Australia and will share his experiences of diagnosis, living alone with dementia, and his experiences as an advcate and speaker for the last few years. Unless you’ve already met hi, his sense of humour and ability to live so positively with dementia will surprise you.

Alister Robertson brings us a voice from New Zealand, and of the transition from business man, to living with younger onset dementia, and his involvement in New Zealands first Dementia Advisory Group of people with dementia and a recent invitation to join their Board.

Mike Belleville recently was the IT man behind the scenes of our WRAD event, and is als now in a senior role with DAI as our IT Developer. Mike lives with dementia, and hosts a monthly online Tech Forum, to support people with dementia to use technology.

Christine Thelker from Canada, whose background is working in Dementia Care, lives alone and rather than sharing her personal story of being diagnosed with younger onset dementia aged 56, which resonates with so many others, she will touch on something she feels is so important to living more positively with dementia, and a tool many in Dementia-land could utilize. She wil talk about how technology has improved her well being, and reduced her isolation.

About the Webinar

This is your opportunity to listen to a panel of experts with the lived experince of a diagnosis of dementia, from a number of countries. Each panellist will share their story, and the program will be followed by a Question and Answer session, where you can ask questions to the panellists, as well as any other attendees who have dementia.

If you have dementia, you will hear many things you will relate to, and may also hear strategies and examples of how to live more positively alongside dementia, in spite of the daily challenges it throws at us.

If you are a family member of professional (academic or health care professional), this is your opportunity to ask the questions you may have always wanted to ask a person with dementia (if a care partner), a patient or a client, but in your professional or personal carin role felt was not appropriate to ask.

As an academic, you won’t have to go through the process of an ethics application, to be able to engage with our members either!

Please note: this webinar is unlikely to be made publicly available after the event, so to listen and ask your questions, attending in person is your chance to meet people with dementia and ask them your questions. We wanted to make it a very personal and confidential environment for our speakers, to allow them the opportunity to speak openly from the heart.

Follow the link to register or go to our Events page for full details, including times in your city or region.


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.”


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.