Please note: this is one event, set in a number of different time zones.
About the Webinar: People with all forms of dementia can experience changes to their walking and balance. There are many factors that can contribute to these issues that can be targeted within an individualised rehabilitation program. James will discuss some of the proactive ways neurological physiotherapy can help with treatment, training and support.
About James McLoughlin: James is an experienced neurological physiotherapist and Director of Advanced Neuro Rehab in South Australia, a neurological and vestibular rehabilitation clinic. In addition, James is an Associate Professor at Flinders University working part-time as a clinical Teaching Specialist. James is passionate in promoting best practice for people with neurological & vestibular conditions.
Wednesday, July 29, 2020 (USA/CA/UK/EU):
2:00 pm Pacific
3:00 pm Mountain
4:00 pm Central
5:00 pm Eastern
10:00 pm London/Glasgow/Dublin UK
11:00 pm Paris, Munich, Amsterdam, EU
Thursday, July 30, 2020 (AU/NZ/JP/SGP/TWN/CHN):
6:30 am Adelaide, AU
7:00 am Sydney/Melbourne/Canberra/Tasmania/Brisbane, AU
DAI Members: we invite you and your families to contribute to the DAI Cookbook project.
Food made with love
Hello everyone and thank you for reading this blog!
September 2020 will be an important month for Dementia Alliance International; during the month of September we will commit all of our efforts to raise funds to ensure the continuity of DAI and our free membership, and member services.
With that, we would like to ask you for a contribution of a few minutes of your time to join us with this exciting venture.
Two of your members, Christine Thelker and Jan Douglas, along with Kate Swaffer are organizing the production of a DAI e-Cookbook…
It was inspired by another wonderful DAI member, Terry Montgomery! Thank you Terry.
We would all love for your favorite recipes to be included in this wonderful book.
We are asking that you submit two (2) of your FAVORITE recipes.
Depending on how many recipes we receive, and what category they are in, will determine which recipes are used in the book.
Please submit your recipes, photos and stories by July 16, 2020.
We have categories for the following recipes:
Salads and homemade dressings
Recipes specifically for brain health
Along with your submission, send us a photo either of yourself, or of the prepared recipe, and a short paragraph about the recipe, what the recipe means to you and your family. [we have already received a number of recipes – thank you!]
Please also note if your recipe is gluten free, sugar free, etc.
See this example of a short paragraph about a recipe:
Hearty Beef Vegetable soup “I always made this on cold winter days, for when the kids came in from playing in the snow and just in time for my husband to arrive home from work, this soup brought our family together, I made it with love.”
We all look forward to reading your stories and sharing your recipes to other DAI Members, and hopefully, to the world.
It will be produced it as an e-Cookbook available on Amazon, and ALL proceeds will go directly to Dementia Alliance International. Dementia Alliance International.
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.
The International Disability Alliance and the International Disability and Development Consortium have launched a Covid19 Discrimination campaign to call to raise awareness of examples of the discrimination that persons with disabilities experience in accessing services and call on the global community on the critical and urgent need to deliver disability inclusive COVID-19 responses at global, national and local levels.
The one billion persons with disabilities are one of the most excluded groups in our society. The World Health Organisation and various other UN agencies are reporting that people with disabilities are being disproportionately affected by COVID-19.
The issue of discrimination is particularly pressing. Evidence suggests that persons with disabilities are among the hardest hit during the COVID-19 pandemic. Dangerous narratives have been emerging that people with disabilities cannot contribute to the response to COVID-19, make their own decisions and most worryingly, that their lives are not considered as worth saving compared to others – in direct contradiction of the UNCRPD and all other human rights instruments.
The campaign will raise awareness of examples of the discrimination that persons with disabilities experience in accessing services (such as health services) during the global pandemic. It will call on the global community on the critical and urgent need to deliver disability inclusive COVID-19 responses at global, national and local levels.
This phase of the campaign will launch to coincide with the World Health Assembly. The public facing elements of the campaign will support the advocacy statement given to the World Health Assembly. The campaign will use the World Health Assembly to highlight the particular barriers persons with disabilities experience accessing health services and why the need to act is so critical and urgent.
Key Campaign Messages:
People with disabilities are being disproportionately impacted by the COVID-19 pandemic.
Information is not being made available in accessible formats, so persons with disabilities are denied their right to make informed decisions.
Negative attitudes mean persons with disabilities are often considered less of a priority to receive critical health care, or their lives seen as worth less than the lives of persons without disabilities.
Social distancing may be particularly challenging for persons with disabilities who require support with personal care.
Persons with disabilities are also more likely to live in institutional settings, which have been shown to be an environment where the COVID-19 virus is exacerbated.
Physical buildings (including health facilities, and testing and quarantine centers) are often inaccessible, and reasonable accommodations like interpreters are often not available.
In many situation, COVID-19 health responses have hindered access to other health services for persons with disabilities. Often, these health services are important and lifesaving, such as rehabilitation services and medicine for people with epilepsy.
Women and girls with disabilities face additional barriers to accessing sexual and reproductive health and rights.
World Health Assembly Statement
The Seventy-third of the World Health Assembly will take place in Geneva, Switzerland from 17 – 21 May 2020. The WHA is attended by delegations from all WHO Member States and focuses on a specific health agenda prepared by the Executive Board.
The International Disability Alliance (IDA) and International Disability and Development Consortium (IDDC) members have submitted written statements to be considered under provisional agenda item 3 Address by WHO Director-General devoted to the COVID-19 pandemic response in advance of the opening of the Health Assembly.
Dementia Alliance International, a an organiszation representing the more than 52 million people with dementia, who are all people with acquited disabilities, thanks IDA and IDDC for their continued advocacy to realise the disability rights for us all.
We recently had the pleasure of sitting down with one of our Board members, Wally Cox, to find out more about his experiences as a person living with younger-onset dementia. This interview is part of a new series we are doing at Dementia Alliance International (DAI) that explores the lived experience of people around the world who are living with any type of dementia.
Every year, the United Nations supports this worldwide observance on 15 May. The 2020 COVID-19 pandemic is a challenging social and global health crisis which brings into sharp focus the importance of protecting vulnerable individuals and families, as well as fostering greater equality for all.
DAI’s vision is a world where all people are valued and included.
We recognize that dementia affects not only people living with a diagnosis, but their families as well. In times of crisis, it is families who stand together, shelter one another, and care for one another. We applaud Wally and celebrate him as a person living with dementia who shows us the meaning and value of family in times of crisis.
Wally, tell us a little about yourself.
I live in northern California with my wife, Pat. We have three kids and two grandchildren and have been married since the day after Pat graduated from high school.
I was diagnosed with dementia at 62. The doctors have diagnosed me with a few different things including frontotemporal dementia and Alzheimer’s, because they are not quite sure what is going on.
Dementia runs in my family. My grandmother became senile (that’s what they called it back then) when she was in her late seventies. Fast-forward a few years and my dad – who was in his sixties – started exhibiting some odd behaviors and doing things that were seemingly out of character. It wasn’t until he got into his eighties that the doctors said he probably had dementia of some kind. That was about the time that I started having problems. And I also have a brother who has been diagnosed with Lewy body dementia.
Q: What impact has this had on your family, having so many generations of people needing care and people needing to be cared for?
My grandparents lived very simple lives and didn’t have much, so when my grandmother got sick, the burden fell on my parents to help her out. There was no support for my mother when she was caring for my grandmother. Finally, they put her into one of those homes. She was there for a few years, drifted away and then was gone.
My dad is a little bit of a different story because my mother was dealing with him by herself. When he got very hard to deal with, I built a house for him next door to me so they could live separately. They were not rich. They were middle class. Half of my mom’s income went to support my dad, and then she was living on the other half.
Years ago, I had been a caregiver for my wife. She had gotten really, really ill twice. The second time, to the point of death’s door. So when I became sick, we had already learned through experience a lot about being a person who needs care and a lot about being a person who gives care.
Q: What has that transition been like, going from care-provider to care-receiver?
After my wife got sick, I built emotional walls between me and her because I was afraid of having my heart ripped out when she died.
I felt like if I put some distance between us, I could survive losing her.
But through counseling and some really honest conversations, we got through that. In the process, I learned that I didn’t need to build walls. I needed to build connections.
When I got diagnosed with this disease, I became a person who needed care. My first reaction? To build walls again because I was ashamed of what I had.
The day I was diagnosed, she told me that she would never leave me, that she would always be there for me, and that she was with me to the end. Just like I couldn’t cure her, she can’t cure me. But she can be with me and that means a lot.
Q: In your opinion, what can we do as a nation and as a society to support and protect vulnerable people and their families in times of crisis?
I think that in the United States, we have done a pretty poor job as a government and as a society in understanding how to best do this.
The doctor who diagnosed me with dementia relocated to Palo Alto – a rather affluent area. He said that a lot of his patients, upon hearing that their mother or father has dementia, the first words out of their mouth are ‘We have got to find a [care] home for them’. As if they are disposable.
My wife’s aunt and uncle live in Tasmania. She has had a stroke and uses a wheelchair. They have all sorts of help – offered by the government – to help them stay in their home. People bring them meals. They come and help with the garden. They help with her care and get her showered because her husband is quite old – almost 90 – so he can’t do these things. The government has gone to extraordinary lengths to help them continue live in their home, which is actually a lot cheaper than if they had to go live in an elder care home.
The Tasmanian government is measuring success by being able to keep you in your home, and that does not seem to be the theme that we see in the United States.
I think that you’re measured by what you do to the least of you, how you treat the least of you: the most vulnerable, the children, the invalids, and the sick. As a person with dementia, what a lot of people don’t understand is that I still have feelings. I still have intelligence and the ability to relate. I forget things and I don’t always do things right, but I am a human being.
Q: In your experience, how does DAI make a difference in the lives of the families of people living with dementia?
As a support group co-host, I meet lots of new people. Sometimes they come to our online support groups for a long time and sometimes just for one or two visits. But overall, the one response we have heard from people is that when they leave that meeting and are back with their families, they’re like a whole different person.
When you’re diagnosed with a fatal disease like this, you feel cast asunder and not really anchored to anything. You just kind of float around in the ocean of worry and concerns. Our support groups are a place where you can find rest. You share with your friends and you start looking forward to the next meeting, to the next week. You’ve got something coming up and you want to learn, and people make you laugh.
So, one way that Dementia Alliance International helps families is by helping people with dementia actually become better family members. I know that when I am less fatalistic and less depressed, I am easier to be around.
Also, caregivers get a break during our support group meetings. My wife knows I am occupied for that hour and a half. She gets the chance to do something else besides pay attention to me.
It also allows the caregiver to realize that dementia may not be as gloomy as first thought.
This month, as we highlight Wally’s story in honor of the International Day of Families, you can help Dementia Alliance International continue to represent, support and educate people living with dementia, their families, and the wider dementia community by donating to us to support more people like Wally.
In honor of International Day of Families, please show your support by donating today.
We celebrate International Nurses Day around the world every year on May 12, which is the anniversary of Florence Nightingale’s birth. DAI also commemorates this important day each year to ensure nurses are honoured and recognised for their work.
Many of our members are retired nurses, and without nurses, many of the services we end up needing would not be available.
The World Health Organisation has also designated 2020 as the International Year of the Nurse and the Midwife, to recognise the important work they do, and the vital role they play in providing health services.
Today, Dementia Alliance International (DAI) is asking you to make a donation to support our important work, in honour of the many nurses in our organisation, and the work they have continued to do in supporting other so many other people also diagnosed with dementia.
Once a nurse, always a nurse!
Due to the Coronavirus pandemic, our sponsors may not be in a position to commit to further funding this year and beyond… We therefore need your help.
This DAI Webinar is back by popular demand, following the recent and very successful April Webinar. It is one event, set in a number of different time zones, and may not be available viewing after the live session.
About the Webinar: This DAI “Meeting Of The Minds” Webinar is a repeat of the session we held on 29/30 April. It is a live event, not the recording of the first session, and both presenters will delve more deeply into the topic, and there will be time for Q&A.
These are challenging times and call for innovative methods. Two nursing homes decided to draw upon and apply the teaching and principles of Dr. Maria Montessori. Montessori believed the most important task of a teacher was not to teach but to observe the students and create an environment that encouraged students to teach themselves and each other what they needed to know when they needed to know it. She achieved amazing results! Similarly, amazing results are achieved when her approach is applied to persons living with Dementia, such as a dramatic reduction in drug use to control unpleasant or aggressive behaviours, reduction in staff & resident injuries, and an increase in level of activity of residents.
How powerful it would be if these same principles were applied at the same time to front line staff and those who supervise them. Effectively, this would create a new architecture for workplace culture, making it possible for employees to be the best versions of themselves as often as possible. We will review two case studies from organizations on their successful journey to breathe Montessori Inspired Principles into their organizations. It’s a Human Thing®
About Dr Camp: Dr. Camp gives workshops on designing cognitive and behavioral interventions for dementia internationally. These interventions are all designed to reduce challenging behaviors and increase the level of functioning and quality of life of persons with dementia. He has co-authored three college textbooks and published over 150 peer-reviewed articles and book chapters.
About Gary W. Johnson: Gary’s passion is improving the relationship that happens between frontline staff and their leaders. He has served as a Vice President of Operations for a large CCRC in central Pennsylvania. Gary is a licensed nursing home administrator. He has served on numerous boards and presented at regional and national conferences. He also served as adjunct faculty for Temple University. He is skilled at creating healthy teams, cultures and operational efficiencies. Gary has the unique ability to see to the heart of things and help people to be the best versions of themselves.
Tuesday, May 12, 2020 (USA/CA/UK/EU):
11:00 am Honolulu
2:00 pm Pacific
3:00 pm Mountain
4:00 pm Central
5:00 pm Eastern
10:00 pm London/Glasgow/Dublin UK
11:00 pm Paris, Munich, Amsterdam, EU
Wednesday, May 13, 2020 (AU/NZ/JP/SGP/TWN/CHN):
6:30 am Adelaide AU
7:00 am Sydney/Melbourne/Canberra/Tas/Brisbane, AU AU
5:00 am Perth AU/Taipei//Beijing
9:00 am Auckland, NZ
The Webinar runs for 1.5 hours.
Check your time if not listed above with this link.
It was World Health Day on 7 April 2020, and we celebrated the work of our nurses and midwives by reminding everyone of the critical role they play in keeping the world healthy. Nurses and other health care professionals (HCPs) are at the forefront of the COVID-19 response.
Frankly, without nurses, there would be no response to the COVID pandemic; without them, our lives would not be as safe.
Many DAI members were also qualified nurses or health care professionals, and although they cannot contribute to the current health crisis as nurses, due to having retired, their work has continued on through DAI.
Determination, service to others, empathy and compassion are the trademarks of all nurses. DAI salutes and thanks you.
Below we have shared some of the stories of a number of retired nurses wo are also members of DAI, not only to help raise awareness of the work done by nurses and midwives, but to raise awareness of the important work done by members of Dementia Alliance International (DAI).
Listen to DAI Chair, CEO and co founder Kate Swaffer, on being a nurse, volunteering for DAI, and why we need your support.
By Kate Swaffer: As a proud retired nurse, who has worked in aged and dementia care, and then operating theatres, it is heartbreaking to see just how hard our nurses are working globally to support the whole world through the COVID-19 pandemic, and this is too often without adequate infection control measures available to keep THEM safe.
Many people with dementia who take on leadership roles in DAI were also nurses or other health care professionals. It seems to be innately who ‘we’ are: helping others. In my life as a nurse and also a volunteer, which I have been doing since my early teens, DAI is the most important volunteer role I have ever undertaken.
Although I work at least as many hours every week as most other CEO’s, very often more, but without the same funding or respect as them, it is truly worthwhile leading an organisation that is so proactively working to support others with dementia to live more positively, and to advocate for human rights and disability rights.
But DAI needs your help. Without donations or partnerships, DAI could not continue, as we are not a well funded organisation; on top of that, we still have no paid staff.
By Maria Turner: “Apart from my family, my nursing career was everything to me, and I was devastated having to give it up. I had to retire from my work as a registered nurse after 30 years, and although I had spent my life taking care of others, mostly in a critical care environment, and I am determined to not let my diagnosis change that. I have always been passionate about volunteering ever since I was 8 years old, and am still actively volunteering for the American Red Cross and for Dementia Alliance International.
Although I was diagnosed with FTD in 2016 at the age of 48 and with ALS shortly thereafter, I do live a full and positive life. I host weekly peer-to-peer support groups all over the world for DAI, and I am determined to help those who currently may not have as many resources as those of us who are attending this conference this week.
DAI and I want to see a stronger and more inclusive community by reaching out to those who are recently diagnosed so that we can emphasize the fact that we must plan for and be excited about our own futures even after a diagnosis.
If I can just walk alongside one person and prevent them from having to walk this path alone, I will know that I had a part in breaking down barriers and helping end the stigma a dementia diagnosis can and will bring.
Do not ever let dementia define you.
Life doesn’t end with a dementia diagnosis, a new life begins.
Maria’s son Rhys also said: ‘Through DAI, mum has been able to fulfill her goal of helping others by giving her a platform to talk to the newly diagnosed. Her responsibilities as a board member keep her sharp and focused. Peers have taken the place of her patients, and through the support groups, she is still helping so many other people.
This is in fact, why it is so important for people with dementia who were nurses to consider volunteering; whether it is at their local Red Cross or Church, or an organisation such as DAI.
It’s not just important it’s the fibre of our very beings.”
(includes excerpts from a speech given by Maria and Rhys at the ADI conference Chicago: Mother and Son)
By Phyllis Fehr: “As a person living with Alzhiemers and a former Intensive Care Unite (I.C.U.) Nurse, I have always felt that this was a hidden and never talked about disease. When I was diagnosed I felt it was my new lease on life to change this so that other people living with dementia didn’t have to hide that they could have a voice and that we have support in each other.
During this time of COVID-19 it is never been more apparent to me that we need extra support. We all know what isolation feels like and to have this added burden of having to be isolated and not leave the house it’s very difficult, it’s a different kind of isolation. So I felt it highly important that we try and help people Living with Alzheimer’s and dementia to not feel so isolated, not feel so alone and to feel supported.
In my years of being a D.A.I. member the camaraderie and learning experiences that we have amongst us is absolutely phenomenal it helps me to get through my day-to-day life.
D.A.I. offers online peer to peer support groups. We learn from each other, we learn how to cope with the day-to-day challenges of living with dementia. We help each other to stay uplifted, we support each other in times of need and there’s no bigger need them at the present. So D.A.I. chose to add extra support groups during this time. I think it’s been wonderful rather than having a once a week meeting we get together twice a week.
We help each other by saying what we’re doing to cope, so that others see that there still are ways to see your grandchildren even though they’re not in front of you. We discussed ways of helping us deal with our stress and anxiety over all of what’s happening and without these groups I don’t know if I personally would be able to cope.
With my nursing background I know what is going on, I know how sick people are and I fear for other people who may get this disease. I also know that people with any type of dementia including Alzheimer’s are more vulnerable at this time and worry about getting this disease, so if we get any form of illness we all decline a little bit more and we’re all worried that if we get this where would we be.”
By Agnes Houston: “I feel I was given a diagnosis and could either sink into the corner and be ‘done to’ or take control of my life. I feel like I am leaving a legacy for others so they can stand up and be a citizen, not a victim.” (extract from an interview for Elder Magazine, Seizing control of dementia)
By Tracey Shorthouse: “Tracey, a retired nurse, was diagnosed with early-onset dementia and posterior cortical atrophy (PCA) when she was in her mid-forties. Tracey is determined to keep her mind and her body active during the coronavirus pandemic with a variety of activities and hobbies at home…. In the old days, when I was a nurse, I used to use Davina McCall’s workout DVDs in a way to keep fit. She really inspired me. And I have started to do that again as it’s so important to keep my body moving.” (extract from the Alzheimers Society UK blog, ‘Life during lockdown’)
It is indeed important to keep moving at this time, and we recommend you contact your local gymnasiums, exercise physiologists, pilates or yoga instructors or other providers including physiotherapists, and ask if they have online group. Many are currently providing online telehealth visits like this for free.
Thank you for honouring nurses and midwives with us, and for your support.