Category Archives: #WAM2016

Winner of the DAI Richard Taylor Advocates Award: Mick Carmody

It is World Alzheimer’s Day 2016 and we are thrilled to announce the winner of the Dementia Alliance International Inaugural Richard Taylor Memorial Advocates Award.

The winner is…

Mick Carmody from Brisbane, a loyal, fun loving and hard working DAI board member and Global Support Group Manager is ensuring through his own actions and dedication to all people with dementia, that Richard’s incredible legacy lives on. Thank you Mick, and special thanks to your wife (and Angel) Sue, your daughter Melissa and your beautiful family for their support of you and our work.

Mick Carmody with his family in Brisbane
Mick Carmody with his family in Brisbane

Mick Carmody thoroughly deserves the Inaugural Richard Taylor Memorial Award for his service to DAI, the legacy left by Richard, and although Richard was one of seven co-founders, Mick has devoted himself tirelessly to carrying on this work. Although he says he was inspired to ‘climb out of that black hole of depression’ through meeting me and getting involved with DAI, his attendance at the Support Groups that were run by Richard himself, inspired Mick as well.

We are all very proud of you Mick, and thank you for your tireless work, patience, humour and support of our members. We had a number of nominations, but it was felt Mick was the most deserving of the Inaugural award.

Mick, the late Dr Richard Taylor would be incredibly proud of you.

A few reasons why Mick deserves this award, as told to us by those who nominated him:

“Mick Carmody is one of those rare souls you can call at four in the morning, and you know he’ll be there for you. Not only will he answer the phone, he’ll immediately ask what he can do to help. Then he’ll listen attentively while you incoherently describe some perceived injustice with catastrophic consequences that will bring an end to civilization as we know it – and provide you the biggest, most absorbent, virtual shoulder to cry on, for as long as you need.

What you can depend on, is that he’ll pick up on one or two things you said and find a way to give you back control over the situation, which, of course, is all you really needed in the first place, but you didn’t know it. “Well, what if I called the office?” he’d ask, and pause. You think, hm, yeah, that might work. But then again… you’re not sure.”

“Members regularly tell me he gets up in the middle of the night to support them either by taking a phone call or setting up a zoom chat, and we all know he started a third support group in the USA time zone that he was getting up at 4am for. He is without doubt, one of our most deserving members, and in memory of Richard, very deserving.”

“In spite of himself finding some he had to learn to live with and overcome some new and more difficult symptoms of dementia (PPA) that suddenly appeared, in spite of them, almost because of them, he kept going. The very groups he hosts, and now overseers as the Global Support Group Manager, also supported him, with a huge show of support and love. This is indicative of his positive effect on others also living with dementia. This new symptoms, which some days he struggles to speak for many hours with, also inspired him to want to set up a support group specifically for anyone with any type of Aphasia caused by dementia.”

Congratulations Mick Carmody

see-the-person-banner-with-copyright-on-the-right-side

 

HOW ADVOCATES CAN CHANGE GOVT. POLICY

We are thrilled to announce our September Webinar, our main World Alzheimers Month 2016 #WAM2016 activity apart from here, and what individual members are doing in their own regions, which although we have been late getting the notice out, we hope you will join us for. Matthew Baumgart is the Senior Director of Public Policy at the U.S. Alzheimer’s Association, who is very accomplished in his work, and a very interesting and entertaining speaker.

DAI’s A Meeting of The Minds with Matthew Baumgart

matthew-baumgart

“MOVING THE NEEDLE: HOW ADVOCATES CAN CHANGE GOVERNMENT POLICY”

September 28, 2016 – 5.00 PM (EST – New York) USA / September 29, 2016 – 7.00 AM Sydney (EST)  Australia

Please note: This event is set in a number of time zones, and has been set up using New York City US – but it is one event for everyone, Wednesday, September 28 in the USA/UK/EU and Thursday, September 29 in AU/NZ.

About Matthew’s session: In 2011, the U.S. federal government provided $448 million for Alzheimer’s research. By 2016, that amount had more than doubled to $991, and the U.S. Congress is considering up to another $400 million increase for 2017. How did it happen? What factors changed the trajectory of Alzheimer’s research funding? What role did advocates play?

Matthew Baumgart, Senior Director of Public Policy at the U.S. Alzheimer’s Association, will answer those questions and more. In the United States, the Alzheimer’s Association – and its more than 600,000 advocates across the country – led the effort to boost research funding. Baumgart will share the keys to success and how grassroots advocacy can succeed in changing government policy – in both research and care.

About Matthew: Matthew Baumgart is the Senior Director of Public Policy for the Alzheimer’s Association. The work under his purview includes state government affairs, policy development, global policy efforts, and public health, including the Healthy Brain Initiative project with the Centers for Disease Control and Prevention (CDC).

Prior to joining the Association, Baumgart worked for nearly 18 years in the United States Senate. Most recently, he was Legislative Director for Senator Barbara Boxer of California, where he supervised the legislative staff, managed all of the Senator’s legislative activities, and was her chief legislative strategist. Prior to working for Senator Boxer, Baumgart worked for over 10 years for then-Senator Joseph R. Biden, Jr. of Delaware, primarily as Legislative Assistant for social policy issues, including health care.

Between his tenure in the Senate and his joining the Alzheimer’s Association in September 2009, Baumgart was the Associate Director of the Initiative on Financial Security at the Aspen Institute in New York City. He is a native of Seattle, and has a degree in Communications, with a second major in Political Science, from Washington State University in Pullman, WA.

You can register here…

Understanding Aphasia

For our daily blog series during World Alzheimer’s Month 2016 #WAM2016, we are adding this short animated video, which give a very reasonable insight into what Aphasia is and how it impacts those of us with dementia or other brain disorders (e.g. following a stroke).

Aphasia: The disorder that makes you lose your words – Susan Wortman-Jutt

Edie Mayhew and Anne Tudors “Bigger Hearts” Campaign story

In our continuing series of daily #RememberMe stories  for World Alzheimer’s Month 2016 #WAM2016, we share DAI member Edie Mayhew and her partner Anne Tudors “Bigger Hearts” Campaign story. It is an exciting project happening in their local community, full of love, inclusion and a while of community commitment to improving the lives of everyone.

Thank you Edie and Anne, for sharing your story with us here…

Edie Mayhew presents at the "Bigger Hearts" campaign launch
Edie Mayhew presents at the “Bigger Hearts” campaign launch

“Anne and I would like to share our “Bigger Hearts” Campaign with DAI members.

It was launched in our home town, Ballarat on 30th August, 2016. The project partner’s include, Dr Catherine Barrett of @celebrateaging, Alzheimer’s Australia Vic and Ballarat, Ballarat City Council, Carer’s Respite and Neighborhood House, Ballarat North  (where our YOD weekly art classes take place). The major sponsor for the project is Australian Unity (our Consumer Directed Package provider) who will cover amongst other things, the cost of a project film.

The title of the project comes from a conversation Anne and I were having some time after the ADI Perth Conference. Anne was talking about how much our lives had changed since my diagnosis and that dementia had been quite transformational in many ways. She talked about the experiences we’ve had and the amazing people we’ve met. When she eventually drew breath, I said “Our Hearts are Bigger”. Anne was stuck for words!!! Since then we’ve distributed hearts to those present at all my presentations.Those in the “Quiet Room” received a heart in Budapest so they’ve travelled to many parts of the world. We moved from recognising dementia making our hearts bigger to inviting others, particularly dementia care workers, to engage their hearts in what they do so that their hearts would also be bigger.

Now we’re asking the Ballarat community to open their hearts to be more dementia aware and dementia friendly. I said we were a sub-culture wanting to be mainstream, not stigmatised, ignored or hidden away. I said we had work to do about increasing awareness and knowledge of dementia in our city, but we couldn’t do it without their support and assistance.

We were delighted the Mayor (who launched the campaign) and Deputy Mayor were present as well as a strong representation of locals. Janet Dore, a local with much corporate experience was MC and we’re delighted she will chair the Dementia Alliance to be formed at the end of October. Janet and I played cricket together in our 20’s!

We have three thousand postcards and five hundred posters distributed strategically throughout the city asking people to write down on heart shaped cards, what they think dementia is and how they suggest Ballarat could be more dementia. The responses will be used to inform the Dementia Alliance. We’ve also distributed lots of badges. A local hotel is having their staff wear the badges for the month of September. They were very keen to hear ideas about situations that arise at the bar at times.

Further activities include an event where people with dementia are paired with someone who wants to know more (a story catcher), to have a conversation about what the person living with dementia wants them to know and understand. We’re anticipating this to be powerful indeed and parts will be filmed. Ballarat City Council is also putting a group of staff though a dementia awareness experience. There is an event at a secondary school and primary school and another with Australian Unity.

An important part of the project is a weekly meeting at The Turret cafe for project partners and anyone else who may be interested to come along to chat, have a coffee, return or take more postcards, give feedback and so on. We’ve discovered a nurse engaged in a dementia research project through the process. The final event at the end of October will be an overview of the campaign, showing the film and signing people up for the Dementia Alliance and Bigger Hearts Club (similar to DAGs).

Something which has shocked and disappointed us during the planning process is the realisation that many local people with dementia, supposedly 1758 in Ballarat at the moment, are reluctant to participate in dementia awareness raising community events.

We’re still working our way through this reality. Some explanations: diagnosis is clearly not happening early enough; a collusion of silence and avoidance exists around people who have dementia, (we were shocked to learn that many people are not told by professionals and family that they have dementia); people with dementia have internalised societal views of helplessness, hopelessness and uselessness and alienate themselves from an active and satisfying community life because they feel shame. We were told time and time again, “They’re not ready yet”.

The experience of many of us with dementia is that socialisation and broad participation enhances wellbeing. There are so many DAI members living a satisfying and meaningful life as you all know. The challenge we face now is to first get PLWD to join others in a similar position in a dementia friendly cafe or pub. We do have some support in this. More than thirty community partners have signed up to Bigger Hearts.

At the moment we’re planning ways to break down some of these cultural barriers that have existed here for generations. It’s just going to take time and we need patience and clever ideas. That’s where Catherine Barrett comes in.

DAI member, Edie Mayhew, Dr Catherine Barrett & Anne Tudor
DAI memEdie Mayhew, Dr Catherine Barrett & Anne Tudor

Before the launch ended, Gorgi Coghlan, a children’s choir and musicians sang and played, “I will remember You, Will You Remember Me”. It was really beautiful and so special.

Follow us at Celebrate ageing: Bigger Hearts

Hope you’ve not experiencing September exhaustion.”

Warm wishes from Edie & Anne.”

Myrna’s story: Excelling for as long as possible

Myrna Norman
Myrna Norman

We are delighted to share another story from one of our members about what is is like living with a diagnosis of dementia. Although World Alzheimer’s Month 2016 #WAM2016 is more than half way over, we have many more to share with you as the month progresses.

Thank you Myrna.

Ps. Next week, on World Alzheimer’s Day 2016, we also announce the winner of the Inaugural Richard Taylor Memorial Advocates award; it continues to be a busy and exciting month!

This is Myrna’s story…

“When the GP informed me of my FTD diagnosis, shock was my first emotion.  Despair, disbelief, and downright disengagement  followed until my decision to educate my self, reach out to those who could mentor me and get a grip, literally.

Losses included the inability to competently do my company’s books, getting lost when driving, making decisions without forethought, and real spacial difficulties.

But hold on to your hat, some gains have also impacted my life.

My decision and my drive to direct my energies to participating in anything and everything to educate, to empathize, to empower those touched be dementia, seemed to take a life of its’ own.  To offer my personal experience to anyone who may listen enabled me to join DAI, Alz Society, Purple Angels, while spreading the good word.

Having an ability to submit to WHO a simple sentence cheered my soul.  The inclusion into online support groups, speaking to Richard Taylor and others working so hard on our behalf, are just some highlights.

Now an Alzheimers diagnosis as well to cope with or to excel with.  I choose to excel as long as possible.  Speaking to Care Aids at their graduations, taking part in forums and local fairs allows me to meet my drive to educate.

Of course, I have many days that getting dressed is an effort that I cannot meet, staying awake for full days seems impossible but always the folks in my life encourage me, understand me, and give me the space and the understanding to Do It My Way.”

With love
Myrna Norman

Kiama DFC project wins WHO Award

screen-shot-2016-09-16-at-3-42-19-pmThis post was first published by DAI co-founder Kate Swaffer earlier this month, but it needs to be published here in celebration of the incredible achievements of the Kiama Dementia Friendly Community Project.

Hence, as part of our daily series for World Alzheimer’s Month 2016 #WAM2016 #DAM2016,  we celebrate and salute them all here.

In June of this year, the Kiama Dementia Friendly Pilot Project which was started as a joint project between Alzheimers Australia, the University of Wollongong and the Kiama Municipal Council, is celebrating. It is striving hard to ensure the Kiama Municipality more inclusive for people living with dementia won a prestigious National Award for Local Government in the Disability Access and Inclusion category.

Many of us in Dementia Alliance International, and beyond, have been saying we have felt it to be the GOLD standard of any dementia friendly community project that any of us have seen or heard of. It seems, the world Health Organisation agrees.

In part, this is because early in the project they set up a Local Dementia Advisory Group (lovingly known as the DAG’s), made up of people with dementia supported by their care partners or friends and significant others, to guide and inform the project. Inclusion in this project has not been tokenism, and they are constantly stretching to find ways to ensure it reaches more than a select few.

When global advocate from Scotland, also a member of DAI, and an inaugural member of Scottish Dementia Working Group Agnes Houston visited Kiama in May, she said; “I have heard others call the DFC initiative in Kiama the gold standard. Now I understand why!”

Full and equal inclusion in everything that is about us, and being supported to live independently in our communities, with support for the disabilities caused by dementia, is not only desirable, it is our basic human right.

Kiama have just recently won another award, this time an International one from The World Health Organisation (WHO). WOW! Read the article in the Kiama Independent Kiama Dementia Friendly Project project wins WHO award

They were recognised for the efforts of Kiama council’s Health Plan and in particular the Kiama Dementia Friendly Project.

Kiama councillor Kathy Rice recently received the council’s award at the seventh Global Conference of the Alliance for Healthy Cities at Wonju City, South Korea. “It’s a great honour to be able to receive this award from the WHO in recognition of Kiama council’s best practice in health,” Cr Rice said.

“The presentation of the award before 500 international delegates has also extended the worldwide recognition of the Dementia Friendly Kiama Project*.”

The first activity of the project featured researchers from UOW learning what it is like to live in Kiama for people with dementia. This guided subsequent work such as:

  • Improving signage, access to transport, businesses and other services;
  • Access to community activities and reduction of the stigma associated with dementia;
  • General community education and specialist education for local medical services and businesses.

It is thrilling to hear that funding has been secured to continue the project into the next phase, moving from a Dementia Friendly Community to a Dementia Enabling Community. and the local University in Wollongong has continued on with a project called Dementia Enabling University Strategy to ensure dementia education become part of all programs there.

The Kiama Dementia Friendly Project commenced in July 2014 when Kiama council was approached by Alzheimer’s Australia and the University of Wollongong to take part in a pilot that would see Kiama work towards being one of Australia’s first Dementia Friendly Communities.

Sandy Halperin: “it is possible to live vitally despite deficits”

sandy-halperinWe continue our #RememberMe daily blog series for World Alzheimer’s Month 2016 #WAM2016 #DAM206 with a story about one of our members Sandy Halperin from the USA.

Sandy has been a fervent advocate, and continues to work to change the myths, stereotypes, stigma and fear surrounding dementia. Thanks Sandy, for all you have done since being diagnosed with dementia, and all that you continue to do.

In a story published on CNN.com, which you can read in full here, it says:

“Losing the ability to think and recall — what could be defined as the very essence of being human — is almost universally terrifying. So terrifying that many people dwell for years in a state of denial. In fact, according to a survey by the Marist Institute for Public Opinion, an Alzheimer’s diagnosis stirs more fear than any other major life-threatening disease — even cancer or stroke.
Denial, it would seem, shrouds the mind from dementia’s more appalling images: patients shuffling aimlessly around a nursing home in wheelchairs, despondent. Or the converse image of the agitated patient thrashing wildly with no concept of where — or even who — they are.
Sandy bristles at those images of Alzheimer’s. While they may capture what the disease looks like during later stages, he says they ignore what could be many productive years during the early and middle stages.
In those years, he says, it is possible to live vitally, despite deficits. He believes he is doing just that.
As best as he can, Sandy remains active and social — dining with other residents at his retirement village and taking twilight walks and pre-dawn swims to try and delay, at least for a while, the symptoms of his disease.”
Watch this video, “Dr. Sanjay Gupta Reports: Sandy’s Story, Part 1” of a series worth watching. Thanks for all you continue to do Sandy.

Veda Meneghetti’s story about dealing with dementia

Today for our series of daily World Alzheimer’s Month 2016 blogs #WAM2016 #DAM2016, and in the theme of #RememberMe we are highlighting one of our members, Veda Meneghetti who lives in Gerringong in NSW, just south of Sydney. Veda is a member of the DAG’s, an integral part of the now world recognised Kiama Dementia Friendly Community Pilot Project, made this video a couple of year ago, her story of living with dementia, which includes her singing to a background of many of her own photographs.

Veda joins the weekly support group in Australia occasionally, and also the Aphasia support group we host monthly. Once you meet Veda, it is almost sure  you will not forget her. Thank you Veda (and her partner Lynda) for making this available to us all on YouTube.

 

 

 

 

Time to examine my personal motto, by Mary Beth Wighton

Mary Beth having fun! Photo credit: Elaine Wiersma
Mary Beth having fun!
Photo credit: Elaine Weirsma 2016

DAI member and a founding member of the Ontario Dementia Advisory Group (ODAG), Mary Beth Wight shares a story with us for World Alzheimer’s Month 2016 #WAM2016 #DAM2016 that she wrote about living with dementia in 2013. Thank you Mary Beth, and keep up your amazing work with your friends and colleagues of the ODAG in Canada. We will share a video about their work later in the month.

Time to Examine My Personal Motto

By Mary Beth Wighton, Person with Dementia Date: September 8th, 2013

“It was one year ago, on September 5th, that my life changed forever. It was on that day I was diagnosed with Frontotemporal Lobe Dementia (FTD). I suppose you can call it a one year anniversary. But, I associate anniversaries with parties and champagne. I partook in neither.

What I have done is a lot of reflection on this past year. It is a bit strange as it seems longer than a year. I think that perhaps the lengthy time it took to be diagnosed with FTD feeds into this time line. At minimum, that tacks on another four years.

As many people will tell you who are diagnosed after a long struggle, it was a relief. I finally have something to call this “thing.” It now gives me the ability to put a plan together and adjust my life accordingly. I now know the kind of help me and my family need. I can now refer in concrete terms (as much as that means) to symptoms, medications, tests, and future plans.

I have always been a person who does not like too much grey. I prefer black and white. It provides sound boundaries that I know I am to operate in. Little room for confusion or error. Having dementia means that I now live in the grey. Boundaries can change quickly and easily. I have tried to learn to adopt to these changes. It has been quite the learning curve.

It wasn’t long after my diagnosis, that I was introduced to and adopted for my personal motto: carpe diem. In loose translation, this Latin phrase means “size the day;” be spontaneous; just go for it. I have not kept this motto to myself but rather have shared it with anyone who will listen to me. I have publicly spoken and written about carp diem.

While I was in the corporate world, at the key milestones and at the end of projects, the team took the time to evaluate our effort. We would compare our results to the intended objectives and determine our success. We would challenge ourselves on how we could improve so future projects would benefit from our learning of the previous project. I found this to be an excellent methodology for project management.

I consider my life not as a project but as a journey. However, I feel I can still use this methodology of evaluating how successful I feel I am in my life.

With that said, I bring you back to one year ago when my goal was to live carpe diem. I now am at a milestone point, where I am reflecting on if this has been successful. Remembering the definition of carpe diem, I am quite happy to state I believe I have been very successful.

I changed when I was diagnosed. I made a decision to be an advocate for those with dementia. I want to help dispel stigma and educate all those who will listen. I want to be proactive in obtaining support and putting my “ducks-in-a-row.” I want to step into the lime -light and stand up to speak for those who are unable. I want to share my journey by writing journals and promoting them. But more importantly than all of that, I want to be a better spouse, mother, daughter, sister, aunt, and friend. I have searched and found a deeper relationship with God. I have renewed relationships and enjoyed meeting new people and making new friends.

Carpe diem is not just my personal motto, it has become my families. We try not to take things for granted anymore. We work hard to try and speak more gently with each other and be more encouraging. We have done a wonderful job at making new memories and jumping at chances for adventures. We are more apt to try new foods and restaurants. And each day, we tell each other of our love for them.

So when I compare what carpe diem means to how I have lived my life this past year, I must say it has been a wonderful success. But this is success as a team, not just myself. My Dawn and Brianna have had a stellar performance. Support has come from all different avenues that have helped me in achieving living for the day.

I have yet to define goals for myself for this coming year. For the new few days, I think I am just going to enjoy the wonderful feeling of all the successes.

Thank you to each and everyone of you who have helped me live with dignity and carpe diem.”

Copyright 2013 Mary Beth Wighton

“Dementia and the kiss of love” by Susan Suchan

As we celebrate our members and share their stories in the spirit of the World Alzheimer’s Month 2016 theme #RememberMe #WAM2016 #DAM2016 we have had a wonderful response from our members to contribute their stories with us here. Susan Suchan has spoken here before, but her story today is of love.

Here is her story about the kiss of love…

screen-shot-2016-09-12-at-6-09-01-am“Some people may look at this picture and become offended that two women are sharing a kiss, some may even wonder if this is a Mother/Daughter moment. The list of perceptions could go on and on.

I am living with a probable diagnosis of early on-set Alzheimer’s, FTD/PPA for quite some time. I choose to live my life with purpose and in the moment. Dementia can reek havoc on my perceptions of a joke, a plan or idea and yes, even emotions.

I may not always immediately connect a look or touch with the correct emotion but ultimately I do. It is an ever changing disease and not everyone will experience it in the same way. I am passionate to help other’s understand and find ways to bridge the gap. I/we, with the diagnosis, are THE best to educate about the intrinsic and at the same time remain believable to those who see not the person, but only the disease and what they have been told to expect.

I may speak in a way that is not understandable at times, I may walk as though I’ve had a few too many nips! Trust me, I am adapting to the changes in my brain that no one would ever ask for. Perceptions are not only misunderstood from my side, they are misunderstood from those I expect to know better. I guess you could now call me a ‘teacher’. I didn’t sign up for it, the pay is nil, but I won’t ever quit.

This picture, is of my sister and I. I am on the left and am the oldest of the two. This is a kiss of love.”

By Susan Suchan