Category Archives: Cafe Le Brain

A story of Walls, Connections & Merry-go-rounds, by Wally Cox

Wally Cox, who is a DAI Board member and peer to per support co-host presented this video presentation at our recent Café Le Brain.

This moving story of love, and his role as a care partner for is wife, and then the transiton from husband and care partner, to himself needing care and support since his own diagnosis of dementia.

“There is no greater agony than bearing an untold story” (Maya Angelou).

This is Wally and Pat’s story.

A story of Walls, Connections & Merry-go-rounds.

By Wally Cox

Being a good care partner is not easy. That is a lesson I learned. 

Pat and I first started dating when we were teens. Determined to get married, we announced to both sets of parents, “We are getting married next Saturday and we sure would like you to come.” I assured them that I had a job that paid 50 cents an hour over minimum wage, an apartment, $75 in the bank, a brand new water couch in the living room (Hey, it was, after all, the 70’s), and my ’65 VW bus was paid for, free and clear – so there! But imagine, they did not share our excitement. In fact, it was quite the opposite. Undoubtedly it was because we were marrying the day after Pat graduation from high school. But we were in love, did get married, and created a wonderful life together, raising three kids. Things were going great until we were blindsided.

It was 1994 when Pat had first become ill. She needed me. And indeed as a doting husband, I undertook all the mechanical aspects of her care. I took her to the best doctors, I made sure she had nutritious food to eat, I helped with medications to ease her pain, and I researched symptoms at the library. However, my emotional response became embroiled in frustration, fear, and self-preservation. When she needed me to sit with her, hold her hand, look into her eyes and tell her I loved her, I became distant, detached, and unavailable… I had gained so much knowledge with so little wisdom.

Sinking in the midst of my own crisis, I didn’t understand why this disconnect was happening. I reached out to a counselor and learned that I was exhibiting a common behavior. Through counseling, I learned that I was defending myself against loss. I had made this all about me instead of all about us.

You see, I was building a wall, stone by stone, of emotional detachment. I was creating a distance between us that had never been present before.

I was hardening my heart so if Pat did not survive, it would not hurt as much. Heroes run into danger and trouble to help those in need. But in my fear, I chose to turn away. I didn’t leave, but I disconnected, building a wall to shield myself from the heartache that was coming.

So much for being a hero in time of need.

In order to break down this wall, I had to take a risk and become vulnerable. I had to let Pat into the darkness of my pain and thoughts:

  • What would I do if she didn’t survive?
  • What would become of our family?
  • Would I ever find love again?
  • And if I did, would that be a betrayal?
  • Could she forgive me for my selfish reaction in the midst of her crisis?

Together, and with professional help, we worked out these issues and built an even stronger bond than we had imagined possible. My fears were normal, our love enduring, our connection complete, the wall demolished.

Lesson learned.

It was seven years later that Pat battled her illness once again, this time ending up in the ICU in grave condition. The doctors told me she could not survive and to call our children home to say their goodbyes. While this was a very difficult time in our lives and as hard as that was to hear, I knew this time I did my very best to stay connected to her – heart to heart – through this second bout of her illness. She and I were prepared, as well as anyone could be, to see our journey together through to the end. I was determined to be the best care partner – both physically and emotionally – a husband could be.

Well, God had His plan for us and our future. It was a miracle Pat survived, and it was a miracle that I had become the husband and care partner she needed.

Walls…

Walls – so good at keeping things out, and so good at keeping things in.

I learned so much through this journey about being a care partner. So, imagine my surprise when I found myself building walls yet again, but now I was on the other side of the scenario as a person who needed and still needs care.

It was at work that I first noticed something was amiss. Sometimes, I didn’t recognize clients whom I had seen just the previous day, computer icons didn’t make sense, and I would repeat questions I had just asked. Simple tasks were no longer so simple. Finally, one day a client who was clearly exasperated by my pacing and confusion asked me, “What are you.. stupid??”  Wow! That hurt! No, I thought, not stupid, but something definitely was wrong.

I was only 60 years old, I had built a successful insurance practice, and yet tasks that I had previously done practically on autopilot suddenly became almost impossible to complete.

My doctor sent me for a neurological workup, where I was given the diagnosis of Mild Cognitive Impairment with the instructions to go on home and return in one year. Boy, it sure didn’t seem so MILD to me. During that year, I made more and more mistakes at work, I was having trouble with decisions at home, and I started feeling awkward in social situations.  Worst of all, I no longer trusted my own judgement.

At my next neurology appointment, I was given the diagnosis of Alzheimer’s Disease. Three generations of dementia: my grandmother, my father, and now me.

I left the job I loved, resigned as a school board member, and quit almost all social functions. After resigning from the school board, I received a call from the local newspaper requesting an interview to discuss the resignation. Instead of taking advantage of this perfect opportunity to speak about Alzheimer’s Disease, I just told the reporter I was ill and I didn’t want to talk about it. When he persisted for more information, I pleaded with him to just leave me alone. Yes, once again I was building my wall.

There I was, isolated by my own choice, hiding from my illness, afraid what others would think. I went into hiding behind my wall… and why?… because of the stigma and fear I felt of having Alzheimer’s.

In the book “Why Many People Abandon Friends and Family with Dementia – and Shouldn’t”, the author states that dementia today is treated like cancer was in the 50’s and 60’s, spoken of in whispers and sometimes kept from its sufferers. You know, like “Aunt Phyllis has the Big C but we are not telling her. Shhhhhhh….. Well now, I had the Big D, Shhhhhhhhh… don’t tell anybody.

 Pat recognized what I was doing and helped me knock that wall down. She found the Alzheimer’s Association in Santa Rosa and signed us up for the Early Stage Support Group. I had my doubts about this group. She signed me up for a support group online with DAI, Dementia Alliance International, a forum run by, and for, those of us with dementia. I had my doubts about this as well.

But I was surprised to discover people talking about dementia openly, unashamedly, and without apology. Counselors, care partners, and people who needed care helped me see that my life still had purpose… hope… which I was missing. I learned again to tear down my wall.

Walls… only the first lesson…

And then Pat and I had to move on to the second lesson…

The Merry-Go-Round.

When I was a motorcycle riding safety instructor, one of the most important lessons I taught was, “Look where you want to go.” You see, we naturally veer in the direction we are looking. I would instruct new riders to pick the best path to follow and aim for it. Don’t focus on the things you want to avoid, the tree, the rocks, the potholes. Look in the direction you want to go. The same is true when facing an illness.

When I was diagnosed, our family doctor told my wife and me to go home and “get our affairs in order.” What did that mean to me? How did I respond? Well, at first, all I could focus on were the depths of the diagnosis, losing myself one bit at a time and all that entailed.

It was as if I was on a merry-go-round, standing on the outside edge as it was spinning around, staring resolutely at the center pole where I saw my future – the big D’s – Dementia, Despair, Depression, Disappointment, Death. I found myself not being able to see anything else, whirling in circles, becoming ill from worry, stress and concerns.

Yet, meanwhile, as I focused on the center of the merry-go-round, behind and surrounding me were all the good things that I would have seen if I had just turned around and looked out instead of in. I was looking at the tree, the rock, the pothole – my Alzheimer’s dementia.

I needed to look outward from this merry-go-round, to see another path, the rest of my world — filled with faith, family, friends, music, love, adventures, art. I needed to recognize that I am more than my diagnosis, that I am more than my illness. Yes, there are things I truly cannot do, but there are many things I can. That is the path I have chosen.

Pat and I have started traveling in our RV, seeing new places and making new friends. I started expanding my interest in art, with my sketching and watercolors. I do more of the things I can to help in our daily lives, and Pat does more of the things she must. But it works.

So where are you and your loved one on the merry-go-round? Are you staring inward at what cannot be controlled or outward to what is possible?

So where are you with your emotional walls? Are you building up, or are you tearing down?

Emotional walls – merry-go-rounds- these are two things that do affect how we wake up in the morning; they do affect how we go through our day; they do affect how we relate to other people; and they do affect how we appreciate the things we have.

We need to recognize and work toward building connections, slaying fear and opening our hearts, having a spirit of gratitude. This is a daily choice.

We need to recognize that the merry-go-round of life is always there. But while we are alive, we can still choose to look in or to look out. This is a daily choice.

The choice for Pat and me is to love, live, laugh, and connect.  What do you choose?

 

        

 

 

 

Join us for WRAD 2020

ATTENTION: DAI members, family, friends, advocates, supporters, and anyone interested in having fun are welcome to join our online event!  Join us for soon DAI’s 2020 ANNUAL WORLD ROCKS AGAINST DEMENTIA (WRAD) & CAFE LE BRAIN
  • Wednesday, March 25, 2020 (USA/CA/UK/EU)
  • Thursday, March 26, 2020 (AU/NZ/ASIA)

This is one event, set in a number of different time zones, as listed below.

Your hosts are Wally Cox and Alister Robertson

DAI ‘s vision is that all people are valued and included. We also have a strong philosophy that working together makes us all stronger. We believe by doing so, we will achieve more tangible change for all people with dementia and our families.

This includes having fun together!

Through hosting the online WRAD event, we bring the power of music to everyone, and support the global initiatives, the Rock Against Dementia, WRAD, and the Purple Angel.

It is also a chance to destress if you are feeling concerned about COVID-19. Due to the virus, most live events have been cancelled. Thankfully, DAI members are used to online events, so everyone is safe…

Our 2020 WRAD program is almost finalised, and as always, it will be a lot of fun. It incudes some new original performances, written and performed especially for the DAI.

As we have combined it with our montly Cafe Le Brain, there will also be an update about DAI, and lots of time to chat.

Opening and closing live performances are once again by the incredible Graeme Atkins, who supported by his wife, is a wonderful example of living positively, alongside the very real and daily challenges of a diagnosis of dementia. His songs are original, and DAI is grateful to have his friendship and support.

JOIN USING THIS ZOOM LINK: https://zoom.us/j/160487058
Meeting ID: 160 487 058


HOSTS: Wally Cox and Alister Robertson

CURRENT PROGRAMME:

  1. Introductions and welcome
  2. DAI updates
  3. Live performance by Graeme Atkins: 6 Years On For DAI
  4. Vince Zangaro: Isolation
  5. Dr Al Power: Happy Wanderer
  6. Mind to Beat, Beat to Mind: Drumming song
  7. Live performance by Graeme Atkins: It’s Dementia
  8. Open discussions

DATES/TIMES:
Wednesday, March 25, 2020 (US/UK/EU/CA):

  • 1:30 pm Pacific Time, PDT
  • 2:30 pm Mountain Time, MDT
  • 3:30 pm Central Time, CDT
  • 4:30 pm Eastern Time, EDT
  • 8:30 pm London, GMT

Thursday, March 26, 2020 (AU/NZ/JP/IND/TWN):

  • 4:30 am Perth, AU / Singapore, SGT
  • 6:30 am Brisbane, AEST
  • 7:00 am Adelaide, ACDT
  • 7:30 am Sydney, AEDT
  • 9:30 am Auckland, NZDT

The event runs for up to 1.5 hours.
Check your times here if not listed above.

JOIN HERE: https://zoom.us/j/160487058
Meeting ID: 160 487 058

Our WRAD event is also an annual fundraiser, which helps us to continue to provide free membership and free services for our members.

Please consider donating.

As little as $10.00 makes a huge difference.

World Alzheimer’s Month 2017

As most people who follow this blog will know it is now World Alzheimer’s Month 2017 #WAM2017. Each September we make our efforts more focused than usual on raising awareness and supporting people with dementia and their families, and many organisations are hosting activities that you can get involved with.

Many of DAI’s members would prefer it was called World Dementia Month, as for those who do not have Alzheimer’s Disease, it can feel exclusive rather than inclusive of everyone with a diagnosis of dementia.

World Alzheimer’s Month was launched by ADI in September 2012. The decision to introduce the full month, to contain the existing World Alzheimer’s Day which is September 21, was made to enable national and local Alzheimer associations worldwide to extend the reach of their awareness programmes over a longer period of time.

For the last three years, DAI published a blog for every day of the month, but decided not to this year, as some people felt overwhelmd from receiving too many emails. Instead we are more focused behind the scenes on working towards intiatives that will last longer than a month, including human rights activities and fundraising so that we can continue to do our work.

Currently, our work is at the global, national and grass roots level, and where possible, and we aim to support local groups of people with dementia and their families who are workign in their local communities. At the grass roots level, our online peer-to-oeer support groups, cafes and “A Meeting Of The Minds” Webinars continue to be well attended.

As mentioned in last weeks blog, we are co-hosting our first live event which is also being run as an online Webinar.  Register here for “Voices of Dementia”. We only have a few spaces left if you wish to attend in person.

Welcome to 2017 and Happy 3rd Birthday to DAI!

screen-shot-2017-01-04-at-11-52-06-am

Believe it or not, DAI has recently turned three! It is usual to say, Happy Birthday so this blog is doing just that! The seven co-founders of DAI who set up this organisation on January 1, 2014, could never have imagined, in our wildest dreams how much progress we would have made in such a short time, and although three of our co-founders are no longer with us, we believe they would be very proud of what they dreamed of and started.

Ironically, most of us forgot our own birthday, and therefore made zero noise about it on the day, but we are however, celebrating it with our members and families at our online Café Le Brain on Tuesday January 17 (USA/UK) / Wednesday January 18 (AU/NZ). Login details have been emailed to members.

We are also very pleased to be able to report that very soon, you will receive DAI’s first formal Annual Report, along with our other news, plans and dreams for 2017, in our first e-Newsletter for the year.

Frankly, it is totally unacceptable that the 2015 conclusion of the Organisation for Economic Cooperation and Development[i], based on an exhaustive study of the world’s 38 richest countries was that “Dementia receives the worst care in the developed world,” This is one reason why we are such passionate advocates for real change, not just more rhetoric.

We may be seen by a few as too critical of some things, or as disruptors, as we often question the status quo. However, if care was not so poor in so many countries, as per the conclusion above, we would not have to.

Our greatest aspiration, is that we can  work together, and that it will always be “Nothing about us, without ALL of us”. We hope that local, national and global groups of people with dementia and the many not for profit and other advocacy organisations can all work together, in cooperation and in harmony, towards the same or similar goals.

As we quoted on Day 1 of Dementia Alliance International:

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)

We are all working towards the same goals, which is to improve the quality of life for all people with dementia and our families; as a global organisation, DAI has a responsibility to work hard towards supporting that gaol in all countries around the world. If all the groups of people making a difference from every corner of the globe, all work together, imagine how much more powerful we could be…

[i] OECD (2015) Dementia: the OECD Response. Paris: Organisation for Economic Cooperation and Development.

Support: of, by and for people with dementia #DAM2015 Day 29

DAI-nothing-without-us

 

 

Very slowly, the world is coming to grips with the fact that many people with dementia can still live good lives. Yes, lives that are productive and where a contribution to society can still be made. It is Day 29 of World Alzheimer’s Month #WAM2015, and our membership os growing. As such, we need to accommodate new members needs.

Dementia Alliance International (DAI) is an organisation where we are living, and hopefully teaching this reality, and our members are encouraged to speak up for themselves, and to contribute as best they can, in any way they wish, and in spite of the varying and changing disabilities imposed on all of us by a dementia. DAI has only been operating since 1 January 2014, but we now the peak body for people with dementia, through collaboration with Alzheimer’s Disease International.

Indeed, we are also bringing to reality, the “nothing about us, without us” slogan.

DAI Membership is growing

Membership of people with dementia in Dementia Alliance International is growing, and therefore, the services and support groups we currently provide have needed to grow two match our increasing membership numbers. Of course, this may mean, sometimes what we have to offer, unfortunately may clash with another organisations services.

Life is like that, but if we are to properly serve our members, we have to hold things at times suitable to them, not us. Naturally, some things we plan may not always suit everyone. It is also why some of us get up for meeting at 5am, or stay up for late meetings at midnight.

DAI is not in business, nor in competition with anyone else. It is, quite simply, an advocacy and support group, of by and for people with dementia. And as our membership continues to grow, we could end up with support group meetings in the same country or region, all being held at the same time, if that is when members want them.

This is especially likely as  the rate of diagnosis is going up at one new diagnosis every 3.2 seconds, and as we have placed a limit on numbers attending support groups at a maximum of 12 people.

DAI is unique

Our uniqueness is that all of our services and support are provided by people with dementia, for people with dementia, whereas other organisations are owned and run by people without dementia. This can be a weakness for us, but it is also one of our strengths.

DAI was set up, in part, because the organisation knows as DASNI, which was originally for people with dementia, was taken over by people with out dementia, and it now offers little for people with dementia, and in fact 2/3 of membership are family care partners.  This is ultimately, the main reason DAI was set up. People with dementia want to run their own race, and DAI did not spring from DASNI, but rather, because they were not necessarily serving what a group of us including the late Richard Taylor, felt were the real needs of people with dementia. We wanted autonomy.

There are many organisations, professionals and interested people, who do not have a diagnosis of dementia, who also run groups and services for us, and for this we are obviously grateful. We cannot do it all, but conversely, nor can they. The advocacy organisations around the world say they have services for people with dementia, but still, most of them are for family care partners and not specifically for us.

People with dementia have felt for a long time that they need their own groups and organisation, and more importantly, need to feel our needs are being met. As we grow in membership, we are simply providing an organisation, that has services including support groups, for our members.

Our point of difference will always be, is that Dementia Alliance International is an advocacy and support group, of, by and for people with dementia, the one thing no other organisation is offering.

In global campaigns to promote dementia friendly communities, having organisations supporting us to ‘do for ourselves’ seems the logical next step, and is also dementia friendly. We may have disabilities, but we will be able to manage our lives independently for longer with support for them, in the same way any other person with any other disability is supported to do so.

DAI support groups

Mick Carmody from Brisbane in Australia is working tirelessly to host and promote support groups for people with dementia all around the world, and he already running them at 5.30 in the morning, and very soon, 6pm at night. Please join him if you would like to be part of a fun group for people with dementia, or support him in his work. Our groups are about supporting each other, about helping newly diagnosed people see their lives are not over, and that they are not alone. They are social as well as support groups, that take place in the privacy of your own home, helping to reduce stigma and isolation. Mick would love to host or set up one for you.

DAI promotes there is life behind a diagnosis of dementia for everyone, and provides a forum for sharing that is like no other in the dementia care sector, or at least that we know of.

Finally, if you from a non English speaking country;

DAI is able to provide the platform for you to run support groups in your own countries, in your own languages. All you need are people with dementia to become members of our organisation.

Oh, and membership, and our services including the support groups, are free.

Copyright: Dementia Alliance International 2015
Editor: Kate Swaffer

Asking for help can be the start of something wonderful, by Gayle Harris

It is Day 11 of Dementia Awareness Month 2015, and Cafe Le Brain host and DAI member Gayle Harris has written an article for our members and supporters. That you Gayle for sharing your ideas.

Screen Shot 2015-09-11 at 7.05.17 pmGayle writes: Over the last two years, since my diagnosis of Young Onset Lewy Body Dementia, I have learnt a great deal about the importance of advocacy.

The most important lesson I have learnt is that it starts with me.

With my focus being towards dementia friendly communities, I decided to see how dementia friendly the shops I attend regularly were.

As I have a support worker with me when I go out, I usually get her to complete tasks that I have difficulty with. I wanted to see if I could get the store keepers to assist me.

First stop was my local newsagent.

Every Thursday I buy a mega quick pick in Powerball. I do not have a registered lotto card, as I want to be one of those mystery winners.

As there are several staff members I asked to speak to the manager. This lady has served me on many occasions.

I explained to her that I have dementia, and was wondering if I gave her my name and what I wished to purchase each Thursday, and that I would pay by using Paywave, if she could keep that information somewhere behind the counter so that the staff could assist me if I gave them my name.

She replied “Not a problem, we do that for quite a few of our customers”

The following Thursday I went into the newsagency and a young girl served me, I just said my name, and after checking a list she said “one moment Gayle, just the Powerball today? I will just bring the eftpos machine over for you”

Next stop was a Subway sandwhich store. The young man serving began his spiel of foot long…what bread…toasted…at one hundred miles an hour. I advised him that I have dementia and asked him to slow down. He apologised and started over, he then asked the girl adding the salads to give me time to choose, which she did. These lovely young people are a credit to both their store and their parents. I doubt if they understood what dementia was but acknowledged my need for assistance nevertheless.

Things were looking good.

As I continued through my list of shopping, asking for help in areas that I would usually get my support worker to do for me, I realised that I had not been asking for help because I was scared of the reaction of the shop staff.

Not once was I made to feel stupid, or a nuisance, in fact when I go back to those places each week now, the staff smile and say hello.

Dementia friendly communities have to begin with us.

People living with dementia look ‘normal’ and we need to understand that people can’t read our minds. Asking for help can be hard, but it can also be the first step in building your own dementia friendly community.

Give it a go, you might be pleasantly surprised.

Warm regards to all.

Gayle

Copyright: Gayle Harris

 

 

Featuring Psychologist, Denise Craig

Denise Crain in Adelaide with DAI member, Ian Gladstone
Denise Craig in Adelaide with DAI member, Ian Gladstone

On the 19th of June this year,   we were privileged to have Denise Craig, a Senior Psychologist and Dementia Advisor,  present at a Café Le Brain in Australia hosted by Dementia Alliance International to discuss her place in the world of dementia care and advocacy. Denise also wanted to receive feedback from the group about post-diagnostic care.

A little background from Denise and a précis of her session…

I came to my dementia advocacy role through my mother’s untimely experience with what would turn out to be a combination of Alzheimer’s Disease and Vascular Dementia. At the time of Mum’s changed behaviours and noticeable memory difficulties I was a mature aged uni student (studying psychology), working part time and raising four children. Mum ‘did everything right’ in that she exercised, had a great diet, enjoyed no more than the occasional social alcoholic drink, she was active, socially well connected, she loved travelling, and she was staunchly Catholic and grateful for life’s many blessings. 

Her illness was unexpected and through us living the nightmare of visiting specialist after specialist (usually to be told we’d need another scan, test, opinion, result, scan, test, opinion, more time etc) I came to the realisation that some things are done well in dementia care and some things are not. I decided then and there that perhaps beyond raising my children, my vocation in life would be in supporting people with dementia to navigate the complexities brought on by illness.

Once qualified I achieved my dream job as Psychologist providing dementia support for people diagnosed with dementia in Cairns. 

Through my role I came to know people living with Young Onset Dementia who often experience a multitude of additional challenges on account of their younger age and life stage. In 2012 (as a private undertaking) I established The Young Onset Dementia Support Group on Facebook as a means of helping to put young people with dementia in contact with each other and also to invite consumers to have their say. I had noticed the difficulty people can have in being heard and I could read the frustration and imagine the angst that would result from the sense of not being believed. It often happens that once a diagnosis of dementia is made, the person has difficulty ‘having a voice’ and may feel as though they are being left out of their own health and lifestyle decision making. This needed addressing.

In an age of Social Media which is readily accessible to many of us, I established the page and although it has disappointing limitations (such as posts by followers to the page are harder to see than posts by administrators) the posts do reach a broad readership very quickly. 

Feedback tells me it has been effective in some arenas and it has certainly helped increase connection of people diagnosed with dementia worldwide. It has also facilitated a host of qualitative responses which have reached peer consumers, care partners and health professionals. Many of the most profoundly powerful messages to the page occur via private messages. Private messages are one way consumers can access the type of support they most want, which is a priority of the page.

Amongst the inspiring advocates I have had the pleasure of getting to know, Kate Swaffer and Christine Bryden have taught me much. I now use all learnings and feedback to tackle aspects of dementia care from within the public service sphere where systemic change can be fostered. My goal of course is to support broad spectrum change in the way we think about dementia and the ways in which we encourage the best possible health and lifestyle for people diagnosed, their care partners and families.

Translating knowledge into practice is essential. After lengthy discussions with Kate and Christine about rehabilitative or ‘enabling’ strategies, it has become clear that knowledge about post-diagnosis options are sadly lacking. 

People diagnosed cannot be expected to see their own way clear of their grief and confusion to advocate for themselves and pursue new strategies that might help. Instead, health professionals could help enormously by facilitating this support during and after diagnosis. 

Enabling support could come from an Occupational Therapist who provides advice about ways to maintain independence, a Psychologist who provides counselling, a Speech Pathologist who supports language difficulties, a Dietician who can advise on dietary recommendations, a Social Worker who can support legal matters and counselling, and so on. 

All too often health professionals are either unaware of the potential benefits of an enablement approach, they don’t know how to reach the help, or the help is simply not available at all.

To be fair, access to available help is extremely complex: it depends on where you live, the funds you have, your age, the expertise of people in your area, whether or not your doctor or another referrer is aware of the availability (which is constantly changing), your mobility and transport and so on. 

Certainly, during our zoom chat the group reported frustrations over the lack of ‘a list’ of service providers and this happens in part because once a list is made it is almost immediately out of date – so it is well recognised that an up to date national information bank is long overdue. A ‘food for thought’ post-diagnosis care pathway document gives a goal to work towards.

To address the knowledge about the benefit of enabling support, I have achieved assistance via the Dementia Training Study Centre National Fellowship Program. Through the Fellowship I am striving to pilot a post-diagnostic care pathway tool. The pathways document is being completed by a multidisciplinary team of health professionals and our consumer member Christine Bryden. During 2015-2016, General Practitioners in Cairns will be approached to use the document to guide the ‘where to from here’ question which consumers ask when they return to their doctor with a dementia diagnosis. 

With excitement it seems that the Kiama Dementia Friendly Communities project is also motivated to pilot the pathways plan and their involvement will increase the feedback from stakeholders and help lead to a better result for people with dementia.

The bottom line for me is that I hope to add my voice and energy to the justification of enabling support after a diagnosis of dementia. 

Not everyone diagnosed will choose to engage with external support but at the moment the lack of awareness of its potential value is a major hurdle. 

For people diagnosed with dementia, my sense is that respect and access to support is overdue and I have to hope that the drive to encourage enablement will lead to an increase in access to needed intervention.

I enjoyed our time together and thank Kate Swaffer and Mick Carmody for inviting me to share my piece of the puzzle and to canvas ideas from the group.

Author: Denise Craig, Senior Psychologist

Note: We loved having Denise share her expertise and experience with our members, and thank her for her time and deep commitment to improving the lives of people with dementia.

Eulogy and tributes to Richard Taylor PhD

Remembering Richard Taylor PhD

The following notes are of the Eulogy given representing the members of Dementia Alliance, and from the heart of Kate Swaffer, current chair, co-founder and editor of DAI.

Hello.

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles (Christopher Reeves)

Richard will continue to be one of my heroes.

I had hoped to write an Obituary to honour Richard, but when I looked up on how to write one, I was directed to all sorts of suggestions, and as I don’t know many of the more personal details of Richards pre dementia life such as birthplace and personal family history which was suggested should be included, I realised the best I could do was to write from my heart.

And so, I decided I would begin with a Haiku version of an Elegy about Richard.

So often, less is more.

Richard

Kind, intelligent
Passionate, real and feisty
Deepest heart and soul

The members of Dementia Alliance International are deeply saddened by the death of Dr Richard Taylor, who passed away at his home on July 25th, due to cancer, and we extend our sympathy and condolences to his wife Linda, son Jason and his whole family, and closer friends. We hope you know how much he was loved and will continue to positively influence the dementia community.

As current chair of DAI, it is an honour and privilege to lead DAI, and to represent our members today in remembering and honoring him. I was privileged to work with him, and call him a friend, and was lucky enough to be in attendance at those early breakfast meetings he encouraged ADI to host during their conferences in 2012, 2013, and 2014.

In his final newsletter, he started with, “Hello, again. Still Richard here, still living with more and more symptoms of dementia I can’t seem to work around/overcome.”

Richard always began his videos and presentations with: “Hello. My name is Richard Taylor, and I have dementia, probably of the Alzheimer’s type.”

Hello is such a simple word, but it in some ways it epitomized Richard, as his focus was on our continued humanity, and not on our deficits, and everyone deserves a hello.

Richard was inspirational, and his influence was significant on not only his family and close friends, but also on a vast number of people living with a diagnosis of dementia of this or that type, and those people that care for us, paid and unpaid, around the world.

He was a founding member of DAI, and had the dream for this group for longer than anyone else that I know of. Together, with him, DAI was created; an advocacy and support group, of, by and for, people with dementia.

As current chair, and also a co-founder, I can only hope we will continue to honour Richard appropriately, as individuals, and through our work in this group.

It is a devastating loss, for each and every one of us as individuals, but also for the global dementia community.

Like hundreds even thousands of people around the world I too had a personal friendship with Richard. I first met Richard online late in 2008, having found excerpts of some of his writing via Dr Google. We communicated regularly after that, via email and even before we met, both said we felt like kindred spirits, on the same journey. Richard led the way for me, as he was the first person with dementia who not only spoke up for living beyond the diagnosis of dementia, he also he showed me it was possible.

His writings were the first I had discovered by a person living with dementia, and in many ways I feel his words ‘saved my life’. By that, I mean he saved me from continuing down the very slippery slope of doom and gloom of dementia, the pathway the medical doctors, health care and service providers also send you upon diagnosis. I had not heard of anyone living so well with dementia, and although I was referred to other books and writing, we were we basically told it is not possible to live beyond the diagnosis of dementia, and these other books whilst very helpful, did not really teach me it was possible.

Richard Taylor taught me that.

Mr Google had become my friend, and back when I was first diagnosed, there was very little being written by people with dementia available online or anywhere, and certainly not about living well with it.

Richard Taylor inspired me not to continue on the downward spiral of Mr Dementia with grace, and with determination to fight for my life and the human rights of all of us facing a diagnosis of dementia, but also to learn to ‘live’ in spite of dementia, and indeed beyond the diagnosis. Richards’s writings were the catalyst for me to start to write about my own experience, and ultimately to find meaning on this wild ride, and his support and friendship kept me going when the ride seemed too rough.

Reading excerpts of his writings was like reading my own story. He helped me find the words to express my own experience. He encouraged me to write, as a way of healing, and of making sense of dementia. He also showed me the way in teaching others, and although I was already standing up and speaking out, Richard kept me going on the days I wanted to give up. He inspired, motivated, and loved us all, and I feel quite sure loved us all as much as we loved him.

Before I met Richard in person, we often said we were kindred spirits. I know he has said that, and felt that with so many. But for me, meeting in person sealed that between us. He was a man of the people, and always opened his arms and heart to us all, without concern for any personal cost to him.

We all loved him, and will miss him greatly.

Just like Richard, finding a cure for any of the dementias has never been my priority. Research into improving the lives of the more than 46.8 million people already diagnosed with dementia is to me, equally important as a cure.

The big Pharmaceutical companies have almost total control of the research industry, and also many of the advocacy organisations, and there really is big money in dementia, which is not always helpful to those of us already diagnosed.

As with any critical illness, and I know we agreed strongly on this point, and we both spoke up for research into improving the care and outcomes for people already diagnosed with dementia.

We must never forget the people who are living with dementia NOW, currently almost 47 million of us.

Our needs are just as important as the need to find a cure, and research into living beyond the diagnosis of dementia, and interventions such as lifestyle strategies, non-pharmacological and positive psychosocial interventions and care and support that focuses on improving quality of life are equally important.

Helping people in the future must not be at the cost of the needs of those of us living with dementia today.

Thank you Richard Taylor.  We sincerely hope your family and very close friends get some idea today of the sense of love we all felt for you, and get some comfort in that. Our sympathy and sincere condolences go out to them, and to each other.

Finally, many have asked is who will take Richard’s place in this fight for equality, and who will be the voice for people with dementia?

I am one person who will do that.

Everyone here today will, I am sure, also fight for equality, autonomy and inclusion. People with dementia, and people without dementia, will do this.

Just like Richard did, Dementia Alliance International wishes to see hundreds if not thousands of people with dementia take his place and all STANDUP AND SPEAK OUT!

And I feel very confident there are literally hundreds or thousands of others living with dementia, or caring for people with dementia, who have accepted this call to action, that he so genuinely and proudly began after his own diagnosis of dementia, probably of the Alzheimer’s type.

Together, we can and will change the world for people with dementia.

DAI Member, Leo White made a poignand and personal tribute,  ending with reading this famous and apt poem by John Donne

No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thine own
Or of thine friend’s were.
Each man’s death diminishes me,
For I am involved in mankind.
Therefore, send not to know
For whom the bell tolls,
It tolls for thee.

Tributes from members and friends who were unable to attend the online memorial:

To begin, I am starting out with a tribute by a dear friend or Richards, Bettina Hackel from Switzerland, who attended the online tribute, but for reasons unknown, missed out  on the chance to participate. Our very sincere apologies Tina, we know how much you loved Richard. Tina posted this on her Facebook page yesterday, and with permission, we are adding it her.

Bettina (Tina) Hackel, Switzerland

THIS IS MY TRIBUTE to yesterday’s Meeting HONORING RICHARD TAYLOR.

For some unknown reasons Gmail refused to send my replies to DAI, so I didn’t make it to Kate’s list. Thank you, Kate, for this wonderful meeting; I could have listened to stories about Richard all through the night!

Hello,

My name is Bettina, from Switzerland. I lived in Florida for ten years with my late husband Alex, who was diagnosed with dementia. I cared for him at home, supported by wonderful and informed Florida folks.

Back in Switzerland I felt miserable. No one wanted to hear from Alex, his dementia, our experiences in Florida.

“Now leave Alzheimer’s behind! Start a whole new life!” so I was told.

In February 2010 I was kinda magically (around some unexpected corners) directed towards Richard Taylor – and there it was, my whole new life!

Richard in his empathetic ways pulled me out of my dark hole.

I found the automated German translations on his website, including his archived Newsletters, bad, even useless. So I offered Richard to translate them for him, and his assistant would publish them in German. This didn’t work very well, and sometimes Richard had no assistant.

So Richard decided to introduce me to the service he used to manage his Newsletters. But first he wanted to know much more about me. He wanted us to work together as friends. There was my new purpose in life!

After a year of communicating online, Richard appeared on my laptop screen with a broad smile:

“Surprise, surprise!” he announced, “we’re coming to Berne! I’ll have a few days, we can meet and spend time together!”

So we did. On our first day we made a roundtrip to the lake of Geneva and through alpine regions. On a stop Richard bought himself a large bottle of Coke.

How did I feel in Richard’s presence for a whole day, as a guide, an admirer and friend to be …

Nervous I was, overwhelmed and happy all at the same time. I felt, Richard was scanning me, highly present and focused.

Richard opened his bottle of Coke and took a good sip.

Then he offered: “Would you like some, too?”

Startled I stammered: “Oh – yes – thanks – but – the whole bottle?!”

“Well, I hope not!” Richard replied with an amused smile.

So I took the bottle and got a sip and passed it back – and Richard calmly gave it to me again – until the bottle was empty. It was a ritual. YES! Now we were friends!

When Richard was back from Europe, I got an email: “YES! I’ll call you today!”

He taught me how to edit and publish the Newsletter, both in English and in German. Sometimes there was an assistant in his office, sometimes not.

When we were alone, we enjoyed to tell each other stories, to talk about our dogs, share experiences and dive into philosophical issues … these were peak moments.

Richard asked me to write a column in his Newsletter. He used Skype when he was on the road to introduce me to friends, and invited me to join online meetings and webinars.

Richard wanted me to become an activist for and with German language people with dementia.

Thank you, Richard!

Tina

Dr Jennifer Bute, FRCGP, UK

I read Richards book ‘Alzheimer’s from the Inside out’ soon after my diagnosis at a time when I read all the books available on the subject and his was the only one that inspired me. Most of the others were unutterably depressing beyond words I was also inspired that he used his past skills to learn from his daily frustrations and communicate them in a way that was familiar other in order to help and inspire others. This was a real inspiration to me to do the same thing with my past training medical experience and teaching skills. I shall be ever grateful to him.

I remember reading in his book about one incident where his family had completely misunderstood something he said. They certainly loved him dearly but they had completely missed the point. I was struck in such a way that I have never forgotten. We must not assume others understand what we are saying even it is obvious and makes perfect sense to us. it is the misunderstanding of what we say that they are rejecting not us!

I first met Richard 3 years ago in London at the ADI conference when he Kate and I shared the same platform. We became friends and he had the amazing ability to make all his ‘friends’ feel special. He always replied to emails and was always encouraging and interested in what others were doing.

I loved his frustration with the  ‘big pharma’ as he called them and agreed with him,  also in his stance with the charities that were apparently more concerned with a future impossibility of a single cure (whenever was there one cure for cancer?) than in enriching the lives of those already living with dementia

His cancer inevitably caused a dip but he made an amazing recovery for a time, which said a great deal about his attitude and he always continued to care for others and was involved until the end. I last ‘saw’ him in a video message at a meeting  (with Kate) in London when we already knew time was running out.

He was an amazing man and his legacy will certainly live on. Thank you Richard.

Keith OIiver, UK

Kent and Medway dementia Service User; Envoy and Alzheimer’s Society Ambassador

Whilst there is a growing number of people coming forward to express what living with dementia is really like, no one has done so with the eloquence, humility and positive impact which Richard brought to the cause.

In preparing today for a radio interview I was mindful of Richard, and turned as I do from time to time to his remarkable book “Alzheimer’s From the Inside Out”. The book is like the man – inspiring. When I first met Richard at the ADI conference in London in March 2012 we immediately “hit it off”. His comment written to me in his book which I eagerly purchased said it all when he wrote,

“To Keith, we are kindred spirits. It is my honour to meet you. Best wishes on your journey. Thank you for making a friend of me. Richard.” The honour was entirely mine, and it was to Richard I turned when Reinhard Guss and I were setting up the Forget Me Not group in Kent. Richard’s advice then was as always, clear, direct, relevant and thoughtful and extremely helpful.

Richard and I also shared the background of being teachers, he in University and me in Primary/elementary schools. Age of student may have been different but we shared the desire to make a positive difference to those in our care, those who were on a learning journey. Although Dementia brought both our careers to a halt it could never fail to halt this desire, and it is to the world of dementia where his skills were so brilliantly applied.

As I often say, one door closes and one door opens, thank you Richard for helping to prise the door ajar, and then to help push it open wider for those of us with dementia.

Brenda Avadian, USA

Unfortunately, we lost one of the great voices with dementia last month (July 25) –Houston-based psychologist Dr. Richard Taylor who raised awareness by talking and writing about Alzheimer’s from the Inside Out.

Freda Collie, UK

‘ Altho’ you, Richard, have never met me, your online friendship, encouragement, support and information, plus your awareness-raising in the community and amongst medics, have helped me and other people with dementia and carers to keep calm and carry on – even tentatively (or confidently) to take up the baton and run for a little way!

Your newsletter and groups, the webinars etc, your humour, even the FB games occasionally, helped to bring that vital human contact here in my very quiet little one-person residence!
Travel in peace. With our thoughts and prayers.

Thankyou!

Freda

Lilia Mendoza, Mexico

I have met Richard through his book Alzheimer from inside out, we found a Mexican Printer to publish his book in Spanish, I had the privilege to review the translation. In that way we were connected. I admire his concepts, wisdom & most of all his sense of humour. He was really some one very, very special. We all with or without dementia are going to miss him enormously, but he showed us the path & we will follow it. Peace to a very special soul!

Kiki Edwards, Nigeria

How do we make the world a better place? We do so just the way Richard did – by infusing empathy into every individual we encounter. Did Richard know how much of an impact he had and continues to have on Nigeria? I know he saw how I religiously re-posted his messages, all of which were in turn re-posted. Words of wisdom, all of them. An insight into his duel with the fiend called Dementia. In his last posts, it was evident he was struggling, but he still managed to put his thoughts across. I waited for comments. None came. I guess everybody was just like me. Lost for words. Then I remembered some of his postings and videos I saw in the past.  People, friends shy away because they don’t know what to say, how to act around people diagnosed. At the end of the day, Richard is still Richard, irrespective of his diagnosis, was his message. I can’t remember my exact comments to his last posts. It was my usual one-liner. I just wanted him to know we were there with him and for him. Then minutes later the comments started flooding in like a deluge! Yes, we all paused, froze, even. We all tried to visualise what he was going through. We all remembered his “teachings”. We all saw him speaking in our head – “I am still Richard”.

Richard Taylor PhD, I, and Nigeria thank you.

Please note: Prior the recording of the online Tribute to Richard Taylor, it was announced that with permission from the family, this would be uploaded for others to view, everyone in attendance was given the opportunity to turn off our cameras.  Richards family has given consent for us to upload it on our YouTube Channel and share it here. Thank you.