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.
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.
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.
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.
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.
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.
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.
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.
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.
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:
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).
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:
Get their attention before you start speaking.
Keep eye contact.
Watch for body language and the gestures used.
Talk in a quiet place. Turn off the TV or radio, and reduce other noise. Ask others in the area to do the same.
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).
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.
Use shorter sentences, and if possible, repeat key words that are important to understand.
Slow down your speech, but not so much that is sounds insulting or patronising.
Give the person time to speak; it may take longer.
Try not to finish sentences or find words for them; this poem may help explain why.
Try using drawings, gestures, writing, and facial expressions. People may understand those better than words sometimes.
Ask the person with aphasia to draw, write, or point when having trouble talking.
Ask more “yes” and “no” questions. Those are easier than questions thatare need to be answered using lots of words or sentences.
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.
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.
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.
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.
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
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 preciseprotocol.
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.
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.
“Cultural competence is about our will and actions to build understanding between people, to be respectful and open to different cultural perspectives, strengthen cultural security and work towards equality in opportunity. Relationship building is fundamental to cultural competence and is based on the foundations of understanding each other’s expectations and attitudes, and subsequently building on the strength of each other’s knowledge, using a wide range of community members and resources to build on their understandings.” Educators’ Guide to the Early Years Learning Frameworkp21; Educators’ Guide to the Framework for School Age Care, p57.
I had just finished presenting on a panel discussion at a Dementia conference. A tall, jovial middle-eastern man in his 20s approached me. We chatted and found we could talk on many topics, so we went for a walk-and-talk. The topic being dementia, and me knowing utterly nothing about his home country, I opened the door by telling how my family handled my paternal grandmother’s senility, and later my Dad’s Lewy Body Dementia.
My grandmother was in her 90s in 1979 when she was abruptly taken from her farm where she’d lived alone since my grandfather’s premature death in 1960. No one explained anything to her or asked what her wishes were. She was tucked away in another city in a nursing home where no one would see her and “embarrass” the family, and that was my parents’ generation’s goal.
To continue the conversation with my acquaintance from a part of the world about which I know absolutely nothing, I simply asked how many first cousins he had, first stating I had 9, they mostly lived within an hour’s drive and I knew all their families.
He threw his head back and had a good laugh. “My family would fill this convention center, and where I’m from – we’re ALL related in some way. I know of over 120 first cousins!” Since my partner passed away during the AIDS epidemic and our foster sons are in their early 40s now and I’ve not had contact with them in years, I have no family other than my birth family and relatives. He found that tragic and shocking. “How do you not kill yourself from loneliness?” I was aghast at his question and fell silent.
In Armistead Maupin’s Tales of the City (1976), Michael Tolliver famously confesses to his hippie friend Mona, “All I really need are five good friends” while he fails over and over (and over) again to find true love. That is part of our culture – many find love in their close friends, forming close, enduring families of friends.
My new acquaintance couldn’t begin to wrap his mind around that, he being from a clan-based culture. So this was the opportunity to ask him if he had any relatives with dementia. I mean, with all those relatives, there mustbe at least a few! He said, “well of course there are some. But you’ll never know who they are. We surround them like the leaves of a head of lettuce, care for them and make sure they live with dignity.”
“Yes, but are their individual rights respected? Are they allowed freedom?” He tut-tutted me the way someone with a British-English accent does.
“You’re trying to understand this through American sensibilities. Turn that off and see through them through my eyes. We never discuss it – we just know they’re losing it, and we deal with it.”
And then he didn’t want to talk about that or anything else any more, politely bade me farewell before we even introduced ourselves strode off and hopped in a taxi.
As of this writing, Dementia Alliance Internationalis active in at least 47 countries and several languages. Our first barrier is the concept of the “Support Group.” Most countries only understand a support group as being AA, and some non-alcoholics in many countries would find it pretty disturbing to sit around at spill one’s guts to other human beings – and have that accomplish anything. But today it is a widely accepted model for recovery in the U.S..
In mental health, vastly fewer support groups exist for persons with mental disease, especially those with severe mental disease. For example, those with schizophrenia, are often not expected or trusted to be able to think or speak for themselves – many are homeless or imprisoned. Support groups that do exist are for the poor families and caregivers who “suffer” silently at their sides (sarcasm). The concept of support groups for persons with any form of Dementia when DAI was first established first was shrugged off, then roundly criticized and now is become an emerging model of living well with Dementia.
For this model of living well with Dementia to continue to proliferate, it can only do so in a context of continuous building of cultural competency. As s DAI embraces persons and groups from other cultures/languages, keeping in mind that a different language is inextricably related to another culture, and not all people who speak a language share a particular culture.
My sister and I visited her friends in Liverpool years ago. I am a polyglot, but I could scarcely understand a word they said, nor they I. They understood my French better than my English. How is this anecdote relevant? For our online support groups to continue to grow in other languages and cultures, we must ask the right questions relevant to others’ cultures and technologies before we begin to extoll the many benefits of DAI.
Do you have access to a device that can broadcast and stream video/audio? Netbooks & tablets start at around $140, have cams and mics. Smartphones are more.
Do you have wifi accessible that supports streaming video?
Is there a quiet place you can use your device privately to stream a chat with others?
Will your family permit you to speak freely online to a group of people who also have dementias?
Culture is: technology, expectations of conduct (profanity, clothing, topics like politics or religion, cross-talk, expression of anger/disgust, taboo topics, observations of religious and civic holidays, etcetera), and certainly how much one discloses in a support group.
For example, in my case I was brought up not to disclose how I feltabout something; that was vulgar. One of my grandmothers was born in the end of the Victorian age in 1894, so she held those values firm. We all have some core values that have more to do with our respect for those who raised than our own beliefs. Those are simply part of our families’ cultures.
DAI does not seek to change other’s cultures. Rather, we endeavor to continuously better acculturate ourselves to persons with dementia from throughout the world. Many of our support groups are cross-cultural. Some are even cross-linguistic as we share the common goal of living well with differing dementias.
It is my personal goal to continue to integrate persons with dementias from cultures speaking the Romance family of languages as I am a Romance Linguist. Many of us who are monolingual are “fluent” in understanding other cultures, ready and able to create a conversation about Dementia which will be of continuous benefit to persons from many diverse cultures. In our support groups, we:
open new channels of Communication, respectful of
diverse Cultures, making
new Connections among persons with dementia and support agencies, often making
Comparisons among ourselves despite the distance, boundaries and languages that divide us, and forming
newCommunities of support, fellowship, laughter, friendship and love.
We do all we can to live well with dementia.
Consider donating to DAI to help support our online Support Groups as we continue to grow throughout the world, fighting the one thing about Dementia that most cultures share: Shame of having a family member with dementia, their forced Isolation and lack of Support and Protection for those living with the disease and their caregivers.
Persons from an Alcoholics Anonymous or a similar background tend to reallyhate cross talk. In AA, everyone gets a turn, and when everyone has finished, then you may have a 2nd turn if there’s time, but you don’t talk back and forth or you are immediately scolded.
Adapted from the World Readiness Standards developed by the American Council on the Teaching of Foreign Languages.
Following our #DAI#Hello my name is blog series for World Alzheimer’s Month #WAM2018, we are continuing with our stories, as we have many more than 30 to share with you.
September was an exceptional month for our members, some whom for the first ime, had been given a voice through these blogs.
Therefore, today, we feature DAI board member and secretary, Eileen Taylor from Australia. Eileen also co hosts the Monday Australian support group. She and her husband Dubhglas are also co founder of a local advocacy group in Brisbane, the Dementia Advocacy and Awareness Team (DAADT) . Thanks Eileen for sharing your story and for all you do for everyone with dementia.
I am still Eileen
Hello, my name is Eileen Taylor. I was diagnosed with Familial Younger Onset Alzheimer in 2009 aged 59. I was the same age my Dad when he was diagnosed with dementia back in the 1980’s. Both he and his brother in the UK died with a diagnosis of Alzheimer’s in 1994.
Back then, Alzheimer’s wasn’t really discussed, and we didn’t know how to recognise the signs. My Dad struggled to focus and sometimes couldn’t remember what happened the day before. His doctor just put this down to being eccentric and told us there was nothing to really worry about.
Throughout his long and distressing struggle with dementia, my Dad regretfully was never told the truth about his illness.
While I am now trying to live well with dementia, it was very different when I was first diagnosed in 2009. Then, I noticed I was becoming a little forgetful, but it was nothing too major. I didn’t really take too much notice until one day I saw a documentary on TV about the genetic link to dementia.
Because of what had happened to my Dad, I thought that I needed to know, so I had a genetic test to find out the truth. Not just for myself, but for my two sons and my grandkids too – I thought they had right to know if the gene was in our family.
At first the doctor didn’t think there was any reason to know, after all I was below the age when most people start to show symptoms. But I pushed for it, and I’m glad I did, because it enabled me to catch it early and to be a part of several clinical trials to find answers.
When the results of my genetic test and other assessments revealed that I did in fact have the gene and had Alzheimer’s, the news was initially “mind-blowing”. I was devastated, it was a “surely not me!” moment. I was only 59. It was the worst thing to happen to me. It was at that moment when I actually felt the pain in my chest after hearing news that broke my heart. On reflection it was like:
“Imagining you wake up one morning and your computer has been switched from a PC to a Mac, and the keyboard is suddenly Azerty. You are now trying to write a paper with that, while your hands are cuffed together, and your head is in a bucket of Jelly.”
Nevertheless, after my diagnosis, I chose to engage in, not give in, but to fight for a cure and to support other people as well as their families living with dementia. I was determined not to remain silent (as what had happened with my Dad) but to speak out and talk to people and help them to understand what it is like to live with dementia.
Parallel to the trials, the Dementia Alliance International (DAI) became my lifeline, an oasis in a sea of medical denial and indifference I had seen from some health professionals. It gave me a voice to speak out and I was accepted unconditionally into the group I joined.
Now, thankfully, I am a part of the DAI Board, serving as their Secretary, Advocate and on-line support group facilitator for the Australian and New Zealand people.
I am also an advocate and co-founder with the Dementia Awareness Advocacy Team (DAAT), as well as an advocate and active participant with Dementia Australia (DA) and serve on several dementia committees.
Doug, my husband has supported and helped me to live positively with my dementia by externalizing it.
I am not the problem, the problem is the problem, and in my case it’s Alzheimer’s dementia.
My dementia externalized is; my “Dark Cloud!” It helps me come to terms, that I am not my Dementia, my Dementia is my Dementia, I am still Eileen.