Category Archives: Younger Onset Dementia

DAI Masterclass 2: My conversation with my doctor

 

 

During September in 2012, DAI hosted four Masterclasses, and to change the pace a little this year for our daily #DAM2020 blog series, on Day 28 of Dementia Awareness Month 2020, we are posting the second one, which is about the conversation with your doctor, when you are worried about cognitive changes.

Included on the panel are two medical doctors, Dr Jennifer Bute and Dr David Kramer, who were both working as medical doctors when diangosed with dementia.  Much of the advice is still extremely relevant to getting a diagnosis today, but it is also very useful advice once diagnosed, for all follow up appointments.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organization.

With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Support DAI to host more webinars like this, by donating today.

Graeme Atkins shares his songs on YouTube

 

 

Graeme Atkins is the 2020 winner of the Richard Taylor Advocates Award, and on Day 27 of Dementia Awareness Month, we are privileged to  highlight some of the songs Graeme, with the support of his wife Susan, has composed and performed.

Graeme was diagnosed with Younger Onset Dementia in 2009, and he says ‘his dementia story’ is actually ‘our dementia story’, as it is his partner Susan’s story as well. DAI is delighted to share two his songs with you here today. You can also read a more detailed blog about his story here, an Interview with myself.

Thank you Graeme. We are so glad  you found DAI.

Al Zheimer’s, by Graeme Atkins

Song for DAI, by Graeme Atkins

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people diagnosed with dementia like Graeme by  supporting DAI.

Bill Yeates shares why he is glad he found DAI

On Day 26 of Dementia Awareness Month 2020, Bill Yeates shares with us why he is glad he found DAI. Thank you Bill, we are all glad you found DAI too.

My name is Bill Yeates and I live on the northern beaches in Sydney, Australia. I was diagnosed with Younger Onset Alzheimer’s Disease last year, at the age of 59.

As devastating as this diagnosis was, it has also opened my eyes, as I now need to create a new life based on new dreams and new hopes for the future.

I am glad that I found DAI, because without their support and encouragement, I doubt whether I would have had the strength, motivation and will power needed to make this journey. In saying this, I believe that there is something very special in being able to talk freely with other DAI members, about the challenges, issues and demands that we face on a daily basis.

To me, it’s like being amongst your closest friends – where everyone is non-judgemental, great listeners and full of compassion.

It reminds me of a definition of a true friend that I recently came across.

Someone who has your back, no matter what happens.

I am glad that I found DAI because I have learnt that being an advocate is more than just telling your story. For me, it’s also about creating an awareness and acceptance in our community and fighting for the rights of people with mental illnesses, such as Alzheimer’s Disease and dementia, on a national and global scale. Of which DAI has an outstanding record, that is internationally recognised.

Finally, I am glad that I found DAI because through my involvement in the Brain Health group, they have been instrumental in motivating me to create my own strategy, in terms of how I can manage my Alzheimer’s Disease on a daily basis.

Based on the concept of positivity, and using the dimensions of Brain, Heart, Mind and Soul, I have created my own ‘leaves of positivity’ which represent the actions and changes to my life that I have made. When joined together, they form my Tree of Awakening your Positivity.

As a DAI member, if you are interested in learning about this approach, please go to my website… 

Thank you for taking the time to listen to my story about why I am glad that I found DAI. I hope that this important month of September, brings everyone, alot of hope, joy and happiness for the future.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people  like Bill by  supporting DAI.

Jane Callachan shares why she is glad she found DAI #DAM2020

DAI member Jane Callachan lives in Salem, Massachusetts and as part of our Dementia Awareness Month series of vlogs/blogs, shares why she is glad she joined DAI. It is already day 20 of this campaign, and we hope you are enjoying hearing from our members…

Jane was diagnosed with younger onset dementia aged 55, and she regularly joins the Friday afternoon DAI peer to peer support group. One of the best things about these groups, Jane said, is that she can join online, and doesn’t have to drive to one!

DAI has helped help Jane feel much more independent, and has introduced her to others who are living positively, in spite of dementia. “DAI really does make a difference”.

Thank you Jane. We are glad you found DAI.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people like Jane today, by  supporting our Virtual Art Auction.

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.

Christine Thelker on why she is glad she found DAI #DAM2020

It is Day 14 of Dementia Awareness Month 2020 #DAM2020 and remarkably, we’re almost half way through for our daily vlog/blog series.

For todays post, Christine Thelker from Canada shares with us all why she is glad she found Dementia Alliance International (DAI). She agrees that DAI has been Life Changing for her, and hears it has been for so many others, and Christine advocates for other people living with dementia in Canada and all over the world.

You should also check out her new website, and recently published book, For this I am grateful.

Thank you Christine. We are all glad you found DAI

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Please join the Monday Science Podcast fundraiser to support more people with dementia like Christine.

#DAIisLifeChanging

Bonnie Erickson on why she is glad she found DAI #DAM2020

Dementia Alliance International (DAI) continues to celebrate Dementia Awareness Month in 2020 #DAM2020, by bringing you daily stories from our members. On Day 10 #DAM2020, Bonnie Eicksen from the USA  tells us what it was like being diagnosed with younger onset dementia, how it has impacted her life, and what she likes about the support and networks she has found through DAI.

Thank you Bonnie. We are glad you found DAI.

https://youtu.be/f6UO7MS32UY

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton. With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important. Every contribution, however big or small, is so valuable to o ur work of supportign people diagnosed with dementia to live more positively, and with a greater sense of hope.

Please join the Monday Science Podcast fundraiser to support more people with dementia like Bonnie.

Natalie Ive: why she is glad she found DAI

As Dementia Alliance International (DAI) celebrates Dementia Awareness Month in 2020, we continue to bring you stories from our members.

It is already Day 9, and in todays podcast, Natalie Ive from Melbourne, in Victoria Australia tells us what it was like being diagnosed with younger onset dementia at the age of 47, and what she likes about the support and networks she has found through DAI.

Thank you Natalie. We are so glad you found DAI.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton. With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important. Every contribution, however big or small, is so valuable to o ur work of supportign people diagnosed with dementia to live more positively, and with a greater sense of hope.

Please join the Monday Science Podcast fundraiser to support more people with dementia like Natalie.

Or you can make a donation directly to DAI.

Emily Tan Tan Ong shares why she is glad she found DAI

On day 8 of the #DAI Dementia Awareness Month series of blogs or vlogs on why members are glad they found DAI, and  why DAI is Life Changing, Emily (Tan Tan) Ong shares with us why she is glad she found DAI.

Emily also shares how DAI has so positively impacted her self avocacy and courage, and her advocacy for others also living with dementia in Singapore and beyond. #DAM2020

Thank you Emily. We are glad you joined DAI.

 

Reminder: the Monday Science Podcast Dementia Series is Fundraising for DAI

#DAIisLifeChanging

#Hello, my name is Graeme Atkins

Image soure: Graeme Atkins

Hello, my name is Graeme Atkins. I was diagnosed with Younger Onset Dementia, and would like to tell you my dementia story. It’s actually our dementia story, as it is my partner Susan’s story as well. I will outline my background, the diagnosis itself, what it is like living with dementia and also how it affects our lives.

I’ll include why my partner Susan and I volunteer to advocate for people with dementia, and I will also explain the reason I joined the supportive Dementia Alliance International group.

Recently, I read DAI’s excellent interview with Theresa Montgomery entitled “Hello, My name Is Terry”. I was fascinated by some similarities between our stories and was thus inspired to tell mine. I have thus decided to interview myself and tell our story.

To this end I give thanks to Susan, my back-up-brain, for her fact-checking and editing. There will also be some internet addresses at the conclusion of this interview for you to click on if you wish. These will take you to various stories, music, and film of our volunteer work in advocating for better understanding and education of dementia.

This is how my interview with myself unfolded.

Graeme, tell us a few things about your background

I was born in Sydney Australia and was lucky to have survived as a baby. After being born with facial tumours I underwent many major operations and radiation treatment when I was only six months old in the 1950’s.

However, I did manage to overcome my childhood medical problems. I eventually became a teacher and taught for 32 years, working as a primary school teacher and also as a high school Mathematics teacher.

For fifty years now I have been enjoying playing the guitar and composing my own songs, which were advantageous in teaching children to read. For example, putting children’s names and spelling words into simple songs made a lesson more enjoyable and retained their interest longer.

I met my partner Susan, who is also a teacher, 36 years ago. We currently live on the North Coast of New South Wales, Australia, having moved here because of proximity to a range of excellent hospitals and medical specialists. Along with Susan, they work very hard to keep me alive and interested in life.

Would you care to describe your main medical problems?

It took some time to overcome my childhood illnesses as my facial tumours and tongue continued to grow. I had numerous operations and radiation treatment as a baby. As time went on, I also required speech therapy and corrective dental work.

Later, I underwent a further operation, which reconstructed my bottom jaw with bone grafted from my hip. The radiation treatment to my head as an infant had stunted the bone growth in my jaw.

In 2009 I was diagnosed with Younger Onset Dementia and had to stop working and driving. More details about that later. I am also on medication for Parkinsonism, as I have some of the symptoms of Parkinson’s Disease.

Then in 2013, I was diagnosed with kidney cancer and had surgery to remove half of my right kidney. Luckily, the doctors were aware of the effects of anaesthetic on my brain in relation to my dementia diagnosis and so an epidural was administered.

In early 2019, I had a major heart attack and my life was saved by ambulance paramedics and hospital Emergency Department staff. I was very surprised to find out that I had eight heart blockages. It was too dangerous to undergo open-heart surgery. Heart surgery and dementia are not good friends, and that’s without even mentioning anaesthetic. Our Cardiology team suggested to just stent two arteries and to leave the other six risky ones alone.

After the heart attack I then experienced a small TIA and numerous seizures. More trips to hospital ensued, which resulted in us getting to know the local ambulance officers, doctors and nurses quite well.

In late 2019, after I become unwell again, I was diagnosed with complete heart block. I was flown to a hospital in Sydney, with a cardiac nurse accompanying me, where a heart pacemaker was implanted. Although 2019 was not a good year medically, I am feeling much better and am greatly indebted to our superb Australian health care system.

Naturally, I have even composed a tongue-in-cheek song about my major illnesses, called My Name Is CHAD. It’s an acronym, which stands for Cancer, Heart Attack, Dementia. I’m starting to think that cats are so inferior to me, as they only have nine lives.

Would you like to tell us more details about your dementia diagnosis?

I was diagnosed with Younger Onset Dementia in 2009 at the age of 54. To me, it doesn’t seem that long ago. This is possibly because I try not to dwell on it. Also, it helps that for much of the time I have probably forgotten about my diagnosis.

Leading up to my dementia diagnosis, my partner Susan had been suggesting that I visit my GP about my forgetfulness and confusion. Things like forgetting names, dates and appointments, using a wrong word in a sentence without realising, declining ability to multi-task, forgetting how to use appliances properly and losing possessions. These were all becoming more noticeable. Eventually I did go to the GP. However, upon returning home, Susan wanted to know what the GP had said. I had actually forgotten to discuss the intended issues.

Susan made another appointment for me and this time she attended it with me. Thus began the long haul for us, involving a timespan of three years, a total of seventy doctors’ appointments and nearly twelve thousand kilometres of travel. We heard many differing opinions, such as things like depression, stress, or even having a midlife crisis.

We had to keep pushing for further opinions, as I continued to decline. Eventually, there were rounds of cognitive testing, several MRI scans and a lumbar puncture. Each of these indicated a concern. I was finally diagnosed with Younger Onset Dementia. In a way, it was a relief. I was still able to do many things quite well, but other tasks were becoming difficult to do.

Life for me and my partner Susan changed forever from then on. We decided not to hide my diagnosis from friends, family and the general public, even though we already knew about the stigma and isolation that often accompany dementia. We have become quite used to being isolated over the years since my dementia diagnosis, as people’s contact seems to have dropped away. Dementia is not contagious. We are absolute experts at experiencing isolation. Under the current lockdown in relation to Corona Virus, we wonder how people would cope being isolated for years as is the case of people being diagnosed with dementia.

How has your diagnosis of dementia affected both of your lives?

It has life-changing effects. It affects work, driving, insurances, finances and daily living, to name just a few. I really miss teaching, especially the smiles on the children’s faces. I knew I could not afford for a child under my care to get hurt, if I forgot to give appropriate instructions or forgot to concentrate.

I also stopped driving. I definitely couldn’t afford an accident, let alone the awful guilt of possibly injuring or killing someone. It was probably a good thing that I was no longer driving, as this had featured prominently in our initial discussions about the need to see my GP. At one stage I had driven down a one-way street the wrong way and it was scary. So was the time when I drove onto the footpath and almost hit a boy who was riding his bike on the footpath.

My partner Susan needed to become my fulltime carer, and so was not able to work anymore as well. Our combined income and future potential finances were impacted enormously. We calculated that had we both been able to work until our retirement age, that my dementia diagnosis had conservatively cost us two million dollars in lost income and superannuation benefits.

Aged in my mid-fifties, I fell between the cracks. It was a year-long battle to get some sort of income. I had little choice but to take out my superannuation early, but even this was like wringing blood out of a stone. I never did get all of my entitlements!

After Susan wrote many letters to government departments, we found ourselves on a wild goose chase. In my application to the Australian Government’s social security department, called Centrelink, we discovered that they did not even have a box to tick on the form for Younger Onset Dementia. Hopefully this has changed. Trying to get a Disability Support Pension seemed to be too difficult. You can’t have dementia – you’re too young! We had of course included reports from medical specialists confirming my diagnosis.

Finally, I was put onto Unemployment Benefits, but of course I had to follow the required rules of turning up to a Job Network in order to be retrained and apply for jobs. I thought, this is going to be interesting. At one stage, in sheer frustration, I asked if I could be retrained as an air-traffic controller – but please, only send one plane at a time. Eventually, my situation was understood, and the appropriate things were put into place to assist us. This is one of the reasons that we advocate for changes, so that people understand younger people get dementia. It is not just an old person’s disease.

Due to your dementia diagnosis, what challenges do you face on a daily basis?

I am unsafe at home alone, after several worrying incidents involving falls, fire, and electricity. Susan has to be with me at all times in case further accidents occur. In the kitchen I have caused three microwave oven fires and we were just lucky they were noticed before they spread further. I have stumbles and falls throughout the house, sometimes requiring GP visits and physiotherapy. These are due to my visuo-spatial issues which are caused by my dementia.

I interchange things that are similar in some ways, yet clearly different. One day I tried to multi-task and feed the cat while also making Susan a cup of coffee. When I took Susan’s coffee into the loungeroom she looked in the cup and told me she couldn’t drink it.  When I asked, Why not? she told me that it had the cat’s meal in it. We both paused and rushed to the kitchen to see whether Magic the cat was enjoying his bowl of instant coffee. He definitely wasn’t.

In the bathroom I invented a new danger. This also involved interchanging things but this time it hurt. While cleaning my teeth I had managed to put the toothpaste onto my razor blade, instead of my toothbrush. I was very lucky to have inflicted only minimal damage to myself. After that, Susan sensibly located the shaving gear in the laundry and left the teeth cleaning gear in the bathroom. Brushing your teeth with a razor is not a good idea.

On another occasion, after buying a new wallet in K-Mart, I sat outside the shop and transferred everything from the old wallet into the new one while Susan continued to shop. After she had driven us home, I proudly pulled out my new wallet. I was horrified. In my hand was the old one, which I thought I had thrown into the rubbish bin outside K-Mart. Back we drove and anxiously searched through that bin while the K-Mart security officer eyed us suspiciously. Luckily for me the bin hadn’t been emptied yet, so I happily retrieved my new wallet containing all my cards and cash.

Webster Packs are generally of great assistance when taking tablets, although I have already made at least four different types of errors. You can take the evening pills in the morning or perhaps take tomorrow morning’s today. Also, you can do a double-up by taking, say, Monday morning’s and then, ten minutes later, take Tuesday morning’s as well. Or, finally, why not just forget to take the tablets altogether?

Many of my daily challenges are referred to in the lyrics of my songs. For example, the difficulties of keeping up-to-speed while watching a television show are mentioned in my song entitled ‘But It’s Happening Now’. The lyrics refer to “In Midsomer Murders I’m always two bodies behind”. This is in keeping with my desire to try not to lose my sense of humour. I am happy for people to laugh at the lyrics of my songs as I know they are not laughing at me.

How do you feel you are perceived by other people?

The situations revealed in the previous section are the type of things that happen to me that people don’t know about. They can see me out and about in public, have a ‘normal’ conversation with me, then wander away and say to someone else “I can’t really see a problem with Graeme,” or that one people diagnosed with dementia especially hate, “They don’t look like they have dementia.”

But people can’t see inside my head, so they can’t see reduced blood flow, a glitch in the hippocampus, high protein levels in cerebrospinal fluid or the results of official cognitive testing. For protection against any diagnosis-doubters, Susan always carries copies of my diagnosis and also my pharmacy medication list, which includes Aricept, in her handbag.

People have no idea that the reason I may have seemed normal to them at that time is because I would have had a nap at home before going out so that I am refreshed. They don’t know that Susan, as my carer, reminds me to have a sleep before we leave home for an outing. She also makes sure our calendar does not have commitments on consecutive days.

One of the things I do find difficult is when people jump in too quickly to try to help me finish my sentence when I have hesitated. They genuinely think they are helping but I would prefer them to wait because their suggested answer can put me off. For example, if I said, ‘During our holidays I went … (pause), and then a kind soul added “to the beach?”  this would then put me off any chance of recalling what I was actually going to say.. “on a helicopter ride.” I am thus visualising sand and surf thoughts, and, for me, these have actually replaced my initial thoughts about flying, rotors and a helicopter.

Tell us about your partner Susan’s role as a Care partner.

Image soure: Graeme Atkins

As a full-time care partner Susan, just like so many other carers, has made many sacrifices, having lost her career, work colleagues, future teaching income and associated superannuation. Most people would not know the extra tasks that fall to a full-time care partner who is looking after someone who has dementia. She is my partner, carer, nurse, secretary, manager, personal assistant, chef, chauffeur and extra memory bank, to name just a few.

I feel such a burden because she has few social contacts and, as I stated earlier, many friends and family seem to go missing when dementia is mentioned.

Susan continues to run the household and drive me everywhere I would like to go, always with a smile on her face. Her only time to herself is when my respite worker arrives. Dementia is hard. She has had to get rid of all the coffee tables and furniture items that have a sharp corner – at times it’s like having a two-year-old in the house. I don’t know how she does it. She takes into account my other shortcomings, like declining short-term memory and difficulties with background noises, multiple conversations or rapidly changing television images. To me, as my care partner, she is like Wonder Woman.

At local meetings and also forums further afield, she has been advocating for carers in general for many years now. This can be any carer looking after someone who has any issue at all. Susan highlights the very important role of carers who are often undervalued in our communities.

In 2011 Susan was named New South Wales Caring Partner of the Year. She was also made an Ambassador to advocate for carers. We were both thrilled to be invited to Sydney as guests of the NSW Government for a lovely Presentation Day awards ceremony at Parliament House. I am aware there are thousands of carers out there in Australia but, even so, from my biased point of view, it was a just reward. I am very lucky to have Susan.

Tell us about the dementia advocacy work that you have both done

In being up-front about my diagnosis we decided to become advocates to improve the general public’s knowledge and understanding of dementia. Susan is a great public speaker, with a wealth of knowledge about dementia. Her mother had been diagnosed with dementia a few years before me, so Susan had the personal experience as well as a lot of imparted medical information. She had two people in her life to assist. Susan quickly learnt that there is some theoretical advice that does not always work in practice, and that every individual is different. Susan’s mother was only 67 years of age when she was diagnosed.

We started doing presentations to try to reduce the stigma and misunderstandings that exist. We have attempted to debunk the myths around dementia, having been invited numerous times by various organisations to explain dementia from our personal experience. In telling our story at forums and conferences, and participating in interviews for radio, newspaper, telephone and television, we have hoped that people have gained a better understanding of dementia.

Sometimes we feel it is very hard to change some people’s long-held incorrect view of some aspects of dementia. Then there are times when we feel we have actually made a difference and helped to affect changes. It seems that the best chance of achieving important changes to local, state or national government policies is when an important person in office has actually had someone in their own family diagnosed with dementia. Or perhaps they have previously worked in the health industry. Either way, they then know from personal experience the complex and long-lasting effects of the disease.

Image soure: Graeme Atkins

Our tag-team method seems to be popular. Susan speaks for several minutes on an aspect of dementia, then I follow her to sing a song that I have written about that topic. We have presented from just ten minutes up to ninety minutes. This method gives me a break between songs, which is necessary.

At one presentation, when we were on for three different times throughout the day, the Aged Care Facility hosting the conference had arranged a bed for me for some naps. Now that shows a real understanding of dementia.

We try hard to explain that younger people get dementia. We also try to make it clear that Younger Onset Dementia is when you are diagnosed under the age of 65. YOD is a key part of our story, because that is the age at which people are likely to be working, have mortgages, or are supporting children, parents or both.

Stigma and isolation, which are often experienced after a diagnosis, also feature prominently in our talks. Another important point we make is that a dementia diagnosis does not mean that a person is instantly incapable of doing things or unable to contribute to society. One time I was asked “When will you go mad?” while on other occasions people are quite surprised when I am still able to do some things well.

We also advocate for improvements to community facilities to make life a little easier for people living with dementia. We were also happy to participate in the YouTube educational movie ‘The Unspoken Impact of Dementia’. (Please refer to Internet addresses that follow this interview)

On the local front, I have been attending the local ‘Timeslips’ program, which is a creative storytelling technique which uses photographs to assist people with dementia to think, reason and speak.

As the other half of our dual dementia presentation, I enjoy having a special purpose for my song writing and singing. I have written many songs about aspects of dementia. It has been proven that music is especially effective in activating multiple brain parts simultaneously. The lyrics to my song “Spreading the Word” try to sum up the type of presentation that we do:

We travel and present so you’re aware,
Here’s our dementia story that we share,
She pleads and speaks it from the heart,
I sing and strum to play my part –
We won’t stop ’til people listen and are fair.

How do you try to keep your brain active?

These days I am still interested in life and still enjoy doing things, but I have had to slow down, learn to pace myself and rest, especially my brain. At home, I like word puzzles, watching soccer, reading books and computing. I especially love to play my guitars, banjos, keyboard and ukulele. As long as Susan can hear some sort of noise emanating from our garage/music room, even it is snoring, then she knows I’m still okay.

Image soure: Graeme Atkins

I still like to play lawn bowls with my supportive and understanding friends at my local bowling club. Recently I purchased a mechanical bowling arm to assist me, which has allowed me to continue playing.

This same enjoyment exists when we are with local ukulele group friends, or at the cinemas, local library or zoo. Socialisation is especially important after a diagnosis of dementia.

But it is important not to just do the same type of things repeatedly. Trying to learn new things, making new brain connections, is especially good for the brain. For example, on the advice of one of my Specialists, I have been learning to play the keyboard. As this instrument is played with my hands down at chair level, I am less affected by my tremors than when I play my stringed instruments.

How did you find out about Dementia Alliance International?

I first met Kate Swaffer at a respite forum in Sydney, about four years ago. I had heard that she is also a staunch advocate, so I started researching the dementia things she was associated with. When I read about Kate’s co-founding of DAI, I googled it and became quite interested in what it did.

The realisation that DAI offered a fun and friendly network of like-minded souls, just like me, was a great surprise.

My respite worker helped me find out what Zoom was and assisted me to buy a webcam for my computer. Not long afterwards, I had registered for DAI and was soon zooming all over Australia, and then the world.

Meeting up with understanding friends without even leaving the house – now that seemed a good idea!

Gone were the usual costs for transport, food and drink. The bonus was there was no need for Susan to stop what she was doing. Being at home, if I get tired, I just say ‘Well, I’m off for a nap. See you all later.’

My DAI Zoom buddies have taught me some new skills, so now I can even do chat and screen share. My weekly support meetings, involving the Australia/New Zealand/Singapore regions, are most enjoyable to attend. So are the monthly international meetings and the educational Webinars. It is interesting to be able to speak to and hear from people from all over the world who also have dementia, just like me.

I get to chat and have fun with my internet support network in a friendly atmosphere. Nobody minds if someone loses track of what they were trying to say, as we are all in the same boat. Nobody rings a conference bell and says that your time is up. At Dementia Alliance International I am accepted by the members, being among friends who show patience and compassion because they can relate to my situation.

DAI’s hosts and members treat each other with respect, equality and without discrimination or stigma. When I see all of our little heads, appearing in an array on the laptop screen, I think it makes us look and feel like a happy little family. Perhaps we look just like the start of the TV show The Brady Bunch, even though we are all in distant locations.

In my opinion, DAI have been trend-setters for a number of years now by supporting people online and by helping them to connect.

People with dementia, who have often been isolated, are still zooming in to their friends. This helps you to feel good. Under the current Coronavirus isolation rules, many people without dementia are not coping with isolation.

However, for many of us with dementia, we have been living in isolation for many years due to the fact that family and friends have often turned their backs on us. (Refer to my ‘Isolation’ song reference at the end, which was written a number of years ago.)

I think that one of the best things about Dementia Alliance International is that it is free to attend. Sure, you need to have a laptop or phone and also to pay for your own data, but’s fair enough. Most other organisations seem to charge you in some way to help you.

It would great if DAI could receive some extra financial assistance to pay for their zoom fees and other set expenses, as they exist on half a shoestring budget and are run only by volunteers.

I’ve been lucky enough to be able to give something back to DAI in the form of music. Sometimes at a meeting I am able to sing a song, for some extra enjoyment. Even my brain synapses must enjoy the extra connections. It has been especially pleasing to be able to contribute some live songs to the last few years of DAI’s annual WRAD – World Rocks Against Dementia – fundraiser meetings. My theme song for DAI describes the alliance as follows:

“We are Dementia Alliance International,
Just for people with dementia, we run our own venture,
We are birds of a feather, who have banded together,
I implore you, to make sure you, do not doubt us,
Nothing about us without us.”

Thank you Dementia Alliance International. It is great to belong to an organisation whose founders and volunteers know how to connect with and support people living with dementia.

For anyone interested, the internet references below will show you various stories, music or film of some of Susan’s and my advocacy work. We do not charge or get paid to present and we give out copies of my CDs and DVDs for free, just in the hope that people will gain a greater understanding of dementia.

DAI thanks Graeme Atkins, and his wife Susan for their story, and especially for their passion to make the world a better place for all people with dementia and our families. We love that he is our self proclaimed ‘Wreck’ officer (Recreational Officer!!!)

The following links from Graeme may be of interest:

https://www.youtube.com/watch?v=z15-0xZTng4 (‘The Unspoken Impact of Dementia”, 4 mins, made by Alucindor Productions)

https://www.dementia.org.au/sites/default/files/DementiaFriendlyGuide_Sept14.pdf  (page 7, foreword, of “A Guide To Becoming A Dementia Friendly Community)

https://www.youtube.com/watch?v=wCOw3hJS_Nw (Song, ‘Happy 5th Birthday Dementia Alliance International, Video)

https://baptistcare.org.au/about-baptistcare/news/an-inspiring-2015-dementia-forum/ (Article on our dementia presentation, written by Michelle Van Doninck, Baptist Care)

https://www.portnews.com.au/story/5495839/stories-take-shape-in-creative-and-relaxed-environment/(Newspaper article, by Lisa Tisdell, Port News, about Timeslips Program with Lisa Hort)