Category Archives: Support groups

World Health Day 2021

World Health Organisation – World Health Day 2021

On April 7 each year, DAI joins the world in observing World Health Day. The theme in 2021 is Building a fairer, healthier world.

We must end discrimination and exclusion.

As COVID-19 has highlighted, some people live healthier lives with better access to health services than other people. These differences are entirely due to the conditions in which they are born, grow, live, work, and age. However, they can also be due to stigma, discrimination, economic status, and other factors such as disability or a disease, such as dementia.

All over the world, people struggle financially, which the pandemic has exacerbated. Some groups struggle with little or no daily income, inadequate housing conditions, poor educational and employment opportunities, gender inequality, age and disability discrimination. They also have little to no access to clean water and air, nutritious food, or health services.

This harms our societies and economies, leading to unnecessary distress, avoidable illnesses, and premature death.

DAI represents the more than 50 million people currently living with dementia. Nearly 60% live in low and middle income countries.

COVID-19 has affected all countries hard, but its impact has been harshest on those communities that were already vulnerable, especially people living with dementia and other disabilities.

Everyone impacted by dementia receives little if any health care. This includes lack of diagnostic support and inadequate support for living with dementia once diagnosed, with interventions such as rehabilitation.

From increased isolation to systemic human and disability rights violations, people with dementia have disproportionately experienced the adverse effects of measures implemented to contain the pandemic.

This is where DAI comes in…

During the pandemic, DAI increased the number of freely available services for people living with dementia by providing even more free, online support groups and other activities for our members in 49 countries. DAI has also continued our global efforts on claiming the human and disability rights for all people with dementia through our international advocacy and policy work.

In recognition of World Health Day, Dementia Alliance International commits to continuing to build a fairer, healthier world.

We will continue to call on leaders to monitor inequalities experienced by people with dementia and our families, and will work towards ensuring that all are able to access quality health services.

As a registered non-profit charity, we rely on the support of people like you. Your donation will help us to provide free online peer to peer support groups for people living with dementia, virtual cafes, and educational webinars, as well as other opportunities for families, care partners, and the wider dementia community.

DAI’s vision is a world where all people are valued and included.

If you do too, please consider becoming a regular supporter of Dementia Alliance International.

Every dollar makes a difference in the life of someone living with a diagnosis of dementia!

We are appealing to you to donate to DAI today.

Thank you.

 

You are invited to DAI’s 7th birthday Cafe

You are invited to the January 2021 virtual DAI Cafe Le Brain to help us celebrate 7 years of DAI’s advocacy and progress.

DAI Celebrates 7 Years

Hosts: Christine Thelker, Wally Cox and Kate Swaffer

Speakers include: Mr John Sandblom, Co founder and Treasurer, Dementia Alliance International, Mr Glenn Rees, Chair, Alzheimers Disease International and Ms Bethany Browne, Human Rights Advisor, International Disability Alliance.

Everyone is welcome.

DAI members will receive the zoom link to join by email.
All others will need to register here please.

DAY/DATE(S):

  • Tuesday, January 26, 2021 (USA/CA/UK/EU)
  • Wednesday, January 27, 2021 (AU/NZ/Asia)
  • Please note this is one event, set in a number of different time zones.

About the Cafe: Every month, DAI hosts a virtual café for its members and their families and supporters, and we have been doing so now for over 7 years!

Each January, we take this opportunity to celebrate our birthday together, and we invite you to join us. From small and humble dreams of global advocacy and human rights, and now, for dementia to be managed as a disability, alongside providing weekly peer to peer support and brain health sessions, we have achieved a lot!

This is your opportunity to hear from others who will share where we have been, acknowledging the work we have done, and dreaming together for our future. Our vision is for all people to be valued and equally included, including people with dementia and our care partners.

Everyone is welcome.

DAI members will receive the zoom link to join by email.
All others will need to register here please.

Programme:

  • Introductions and welcome by Kate Swaffer
  • Graeme Atkins performs, Happy 7th birthday DAI
  • Introducing our new Chair, Alister Robertson from New Zealand
  • Board update, Alister Robertson
  • DAI ‘(W)re-creational Officer, Graeme Atkins performs the DAI 7th birthday song, written by him
  • DAI’s global advocacy, and the value of our collaboration with ADI, by Glenn Rees
  • The importance of human rights and the CRPD for people with dementia, by Bethany Browne
  • An overview of the last 7 years (with images), hosted by Christine, Kate and Wally; you will hear from others including co founder Amy Shives and our long term volunteer Sarah Yeates

We will hear from a number of members and guests, inluding some of our co founders, volunteers and other special guests, including:

Mr John Sandblom, who is a co-founder of Dementia Alliance International (DAI), board member and the current Treasurer, and was instrumental in helping to set up DAI.

Mr Glenn Rees, who is the outgoing Chair of Alzheimer’s Disease International, and a former Chief Executive Office of Dementia Australia.

Ms Bethany Browne, who is the Human Rights Advisor to the International Disability Alliance, and formely worked for Human Rights Watch, including writing two reports on the excessive use of chemical restraint in nursing homes in the US and Australia.

Everyone is welcome.

DAI members will receive the zoom link to join by email.
All others will need to register here please.

DAY/DATE(S):

Tuesday, January 26, 2021 (USA/CA/UK/EU):

  • 1:00 pm Pacific
  • 2:00 pm Mountain
  • 3:00 pm Central
  • 4:00 pm Eastern
  • 9:00 pm London/Glasgow/Dublin UK
  • 10:00 pm Paris, Munich, Amsterdam, EU

Wednesday, January 26, 2021 ( AU/NZ/ASIA):

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

The Webinar runs for up to 1.5 hours.

Check your time here if not listed above.

COST TO ATTEND:

  • FREE
  • YOUR DONATIONS ARE GREATLY APPRECIATED

PLEASE DONATE TO DAI OR BECOME AN ASSOCIATE OR PARTNER WITH US. WITHOUT YOU, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & OUR GLOBAL FAMILY.

Support people with dementia:

Everyone is welcome.

DAI members will receive the zoom link to join by email.
All others will need to register here please.

THANK YOU

Lyn Rogers shares why she is glad she joined DAI

Lyn Rogers is a member of DAI, and shares with us on Day 24 of Dementia Awareness Month, why she is glad she found DAI. Lyn has been a permanent resident in a nursing home (residential care facility) in the state of Victoria in Australia for over two years.

Lyn has a diagnosis of dementia and lives with other comorbidities, like most people over the age of 65. She moved to the facility from Queensland, therefore most of her family and friends are not living nearby, and although she uses a crutch, she loves to go for a daily walk, which is essential she maintain her mobility and emotional health. It has been much more lonely since the COVID-199 pandemic, as she has faced significant challenges being allowed to maintain her walking and other activities.

Thank you Lyn. We are really glad you found DAI.

https://youtu.be/pCYeS8NERbo

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 with dementia like Lyn to have a voice, 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.

Wally Cox: Why I’m glad I found DAI…

This September, we celebrate Dementia Awareness Month 2020 #DAM2020  with a daily series of blogs, vlogs and podcasts, many of them from DAI members talking about why they are glad they found DAI. Many tell us that DAI is Life Changing.

On Day 1, we are thrilled to kick off our series with a video of DAI board member and support group co host, Wally Cox, and his wife and B.U.B. (Back Up Brain), Patricia, sharing why they are glad they found DAI. Thank you Wally and Pat. 

Please Donate to or Partner with DAI. 

#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)

 

Communicating with a person with aphasia

Image source: Kate Swaffer

In the last few weeks, a lot of people and organizations who have never before used zoom (or a similar online platform) have had to meet online for work, family and social gatherings.

Even organizations who have been using zoom for a long time, have started producing help sheets and other resources on how to use it. At last… the world is catching up, and people with dementia really appreciate it!

Online communicating is difficult, but for many who are diagnosed with dementia, is preferable to a phone call, as we can see the others persons face and expressions, and therefore alsohave a visual cue beyond a name of who we are talking to.

For those with dementia who also have aphasia such as Primary Progressive Aphasia, it is not easy to communicate in person, let alone online, hence we wanted to post this blog with some tips and other resources.

DAI has posted blogs on aphasia previously, including a short video in 2016 on a post titleed Understanding Aphasia. This DAI blog also has a caregivers guide, produced by the National Aphasia Association, and the following video is worth watching (again).

The National Aphasia Association in America also has a lot of useful information on their website.

Tips for Communicating with a Person with Aphasia

These tips may make it easier for you to understand and talk with people with any type of aphasia. To help a person with aphasia communicate with you, try the following:

  1. Get their attention before you start speaking.
  2. Keep eye contact.
  3. Watch for body language and the gestures used.
  4. Talk in a quiet place. Turn off the TV or radio, and reduce other noise. Ask others in the area to do the same.
  5. Keep your voice at a normal level. You do not need to talk louder unless you are asked to (we are not all hearing impaired).
  6. Keep the words you use simple but adult. Do not “talk down” to the person with aphasia, as if having aphasia (or dementia) means having intellectual deficits.
  7. Use shorter sentences, and if possible, repeat key words that are important to understand.
  8. Slow down your speech, but not so much that is sounds insulting or patronising.
  9. Give the person time to speak; it may take longer.
  10. Try not to finish sentences or find words for them; this poem may help explain why.
  11. Try using drawings, gestures, writing, and facial expressions. People may understand those better than words sometimes.
  12. Ask the person with aphasia to draw, write, or point when  having trouble talking.
  13. Ask more “yes” and “no” questions. Those are easier than questions thatare need to be answered using lots of words or sentences.
  14. It is ok if the peson makes mistakes sometimes. They  may not be able to say everything perfectly all the time, but neither may you.
  15. Let them try to do things for themselves, even if they need to try a few times. Help me when help is asked for. Unless it is dangerous there is no need to intervene uness asked to.
  16. Aphasia does not equate to an intellectual disability, but rather is a language impairment or disability

Whilst DAI currently does not have peer to peer support groups specifically for people with aphasia, if we have enough requests to do so again, we will do o ur best to set one up. Contact us at [email protected] if you or someone you support is interested.

Register now for our June “Meeting Of The Minds” Webinar, Dementia, Human Rights, Selfcare and COVID-19

Introducing the DAI Peer to Peer Support Groups

The video below introduces the DAI peer to peer support groups, with members from the weekly Sunday Living Alone Social Support Group. DAI members facilitate and provide online peer-to-peer support groups and social groups for people with dementia.

The DAI peer to peer support groups are run by people with dementia, for people with dementia, and are a meeting place for people diagnosed with all dementias including Alzheimer’s disease and any other type of dementia.

During the current COVID-19 Pandemic, meeting online has been more important than ever before, for everyone, and as it has become the current new normal for communicating, socialising and doing business all around the world. DAI is proud to have been providing online support to its members for since January 1, 2014.

 

Online peer to peer support groups are ideal for those who cannot drive to their local “in person” support group or who live in isolated areas with limited access to services.

Each support group has its own co-hosts, and runs autonomously, to ensure that our groups continue in the case of one person suddenly being unable to manage them due to health changes or a resignation.

DAI also provides peer-to-peer mentoring, if you prefer one to one support, rather than joining a group.

We are occasionally asked if peer-to-peer groups really work; it is clear they do, as well proven by Alcoholics Anonymous (AA) which was founded in 1935 by Bill Wilson and Dr. Robert Smith.

Dementia Alliance International (DAI is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positively than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.

Donating or partnering with us will make a difference to the lives of people with dementia.

Membership of, and services provided by Dementia Alliance International is FREE, and open to anyone with a diagnosis of any type of dementia.

Join DAI here…

Read our regular blogs here…

#Hello, my name is Valerie Schache

Special thanks to DAI member, Valerie Schache for saying #Hello today, the continuing blog series we are publishing for Dementia Awareness Month/World Alzheimers Month. #WAM2019

Image source: Valerie Schache

Hello my name is Valerie Schache (Val). I’m 67 and I live near Ballina NSW Australia. I have dementia and I continue as the long term care partner for my husband with complex needs since 2004 . I was diagnosed August 2015 when I was 63. I was not supported, just given a dementia drug and ‘bye’. I’m still not tagged; I don’t fit the requirements for NeuRa Frontier etc and am left to my own devices to find a way through the minefield of deficits.

My paid skills were as acupuncturist physiotherapist including complex pain in de-mentia aged care. I’m also a life time farmer. I thank my country upbringing and wise parents who included me in ‘Why is this so’ type of discoveries. I have massive cognitive reserves to cope with the diverse defi-cits says my neuropsychologist assessors. We pioneered in farming and I in allied health and I now pioneer best health practices in the dementia space. 

I Thank God for DAI [Dementia Alliance International]. I was unravelling – not supported – not being believed; stigmatized and isolated to near oblivion and self harm.

My first DAI zoom in 2016, with a mob of diverse people globally with dementia—I laughed for the first time post diagnosis as I participated; I didn’t have to pretend in this group. I was encouraged to seek the latest ideas and I improved cognitively with the Bredesen type protocol. I then got angry that the ‘establishment’ weren’t right, that nothing could change a dementia journey. I became motivated enough to give back and educate for inclusion of my dementia disability—my human right; for suitable rehabilitation to keep me well and kindness. I have pre-sented globally nationally and now locally. Facebook has been my ‘work’ pre-dementia so I now also have an active group ‘Val’s journey –dementia is a word not a sentence’ and comment often on other sites. I am gifted at reading research papers and gleaning the nuggets of change for the better from diverse sources. 

Advantages of dementia: yes, there are some.

I’ve found who my handful of friends really are. My personality type changing deficits means I’m now stronger minded. opinionated; my language is colorful, pithy and sometimes to the point. My ‘bull-shit’ meter is accentuated and I certainly won’t be patronised or treated as less because I have a neurodegenerative disease. I tackle things from the front foot.

Yes I can only now do one thing at a time– but then so do most men. Passionate, fearless bold as a hyena I help tackle issues especially if injustice is involved. I can still read a scientific paper of any genre and give you back six points in plain speak to any audience. My considerable savant knowledge is exposed and I’m well read. 

Disadvantages of dementia: yes!

In my ‘bestment’s’ words ‘It’s a pain in the ‘butt’ —I want my old Val back’ – it wont happen this side of eternity but I’m committed to her and we support each other and its ongoing. We are a great team. I struggle to be OK with the flamboyant new me. I have constant grief as I have brain ‘rat gnaws’ and I wonder what’s gone this time and can I get around it!

I hate having disturbed bodily functions; to always be reminded to remember what I need to take especially if I am distracted. I hate needing to pace myself, and accepting increasing support from others.

To be told ‘you don’t look like you have dementia’ – deep breathe Val– that is such an insulting reflex comment—one you would not say to someone with diabetes etc.

I have a DNR bracelet and all our legal affairs are in order so I don’t have to think about that part of the future except with joy at going home. 

I know dementia’s for over fifty years, observation and then worked as an acupuncturist physio for 32 yrs; a decade in a locked dementia ward and since 2005 have supported dozens of friends to die with dementia. But I say dementia should be rare—not an epidemic. 

What’s changed since the 1950’s?

Lets consider plastics, diesel fumes, atomic bombs, margarines and cholesterol issues/reduction and less sleep /increased stress and now obesity. It’s onset can be slowed even preventable with diet, BP/ Weight control. I say ‘If great grandma wont recognize it , its not food’ e.g. margarines. Hundreds of us in dozens of countries are creating a quiet revolution of change- confounding the ‘experts’ by reversing /slowing dementia– bringing hope to those able to follow a personalized precise protocol.

Back to basics of having health gut biomes for a healthy brain. Removing allergens including foods and environmental toxins especially mold. Team Val use hair analysis blood tests supplements and other hands on best practice to improve me holistically. Being mindful, stress controlled, sleeping soundly, very kind to yourself and at peace with those around you. Live in the moment as it is your pre-sent. I have hope, I have significantly improved in many markers since 2015 and I have dementia. 

Final words…

Its not the future I would have chosen, but we are making the best of this deal and giving back . We laugh and love freely. I aim to ease the life of all the other thousands pre and post dementia diagnosed. I’ve always smashed ‘glass ceilings’ so I’m breaking down the myths /assumptions about de-mentia, boldly and in every avenue presented to, or created by me. 

Don’t be like dementia, it doesn’t discriminate, it is a disability, and it is unkind. Be aware not to discriminate, be inclusive and be especially kind to all, and do everything to slow or prevent the onset of dementia for your own sake. 

Valerie Schache © 2019

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.