On day seven of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of living with dementia. Thank you Carol for writing your very first blog for DAI for this series to help us raise awareness. You and your husband Brian are an inspiration to us all.
This is me… Getting on with life!
Hello, my name is Carol and I am aged 61. I was diagnosed with Younger Onset Alzheimer’s Disease in December 2015.
I had various problems and issues for over twenty years, which began in my mid thirties.
When I received my diagnosis it was therefore not such a dreadful thing, but a huge relief that there was actually a valid reason for what was going on.
I could now understand and deal with this new life. I could seek further help and advice, read up on literature and ask questions to know what this thing is and how to deal with it.
From this moment on I could plan my life around my dementia, and put in place strategies to help me cope with the symptoms. The one amazing thing to come out of this was a personality change, which turned me as a person upside down, and actually made me a better person.
I used to be very shy, quiet and introvert. From a very early age I can remember being painfully shy, I would never speak out at school, make friends or speak out about anything. If I did, I would be ridiculed and laughed at. It was a very difficult time and one I choose to forget.
But now, since my dementia, I am outgoing, make many new friends and speak at conferences, meetings and anything really that comes up. I write poetry, stories and try new things all the time.
This is the new me, and I must say, I love the new me and all that has come with it, other than the dementia of course. But without that I would still be the old me.
I have a wonderful husband, Brian, who is also my carer. He is amazing in all that he does for me. At first, yes we had problems. He would try to do things for me rather than help me to do them. We had a few minor arguments and he eventually asked how I would like him to help. We had a great discussion and things got sorted. Now we make a fantastic pair. I ask for help when I need it and Brian watches me covertly to see if I am struggling. He will often offer his help, other times he just watches and makes sure I am ok and most importantly safe.
Without Brian in my life I dare say I would slide down that slippery slope would not achieve what I do, I would not faster than Sonic the Hedgehog on ice.
So, this is me, with my dementia, and my wonderful husband Brian, getting on with life to the best of our abilities.
We have a great life even with DEMENTIA. You can too.
On day six of #DAI’s #WAM2018 series of #Hello my name is blogs, we share one of our USA members, Dr David Paulson’s story of living with dementia.
David Paulson was raised on a traditional Midwestern farm in the U.S. Fascinated by the human language processing, he later earned a doctorate in Spanish Applied Linguistics from the Univ of Illinois.
He was subsequently appointed to teach English Composition at the Univ of Barcelona in Spain, going on to spend time in 14 of the 19 Hispanic countries. He has taught Spanish, French, English as a Second Language, The U.S. Constitution (in English and Spanish) and G.E.D. prep for over 30 years, traveling widely with students from the Univ of California, State University of Minnesota and Concordia College systems. David has recently retired.
Thank you David for sharing your video story for this series to help us raise awareness. David is very actively involved in DAI, is a member of one of our USA peer to peer support groups and will be hosting our new Spanish-language peer-to-peer support group starting October 9, 2018.
On day five of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of living with dementia. Thank you Julie for writing your very first blog, especially for this series to help us raise awareness. Julie is very actively involved in DAI, is a member of our UK/AU/EU peer to peer support group, and has offered to host our Living Alone social support group, starting soon. She is also involved in many local and national groups in the UK.
My story: From Nurse to Advocate
By Julie Hayden
Hello, my name is Julie Hayden from Halifax, UK. I was diagnosed last year aged 54. I can’t tell you the type of dementia I have because my doctors haven’t told me yet. Maybe I’m being a little impatient and unreasonable. It’s only been 2 years since my 1stscan showed marked cerebral atrophy.
As a former nurse I find the delay between the disparity between how my brain is and how it should be and achieving full diagnosis totally unacceptable. I can’t help feeling that if a brain tumor was suspected that the medical profession may have moved a little quicker.
My diagnosis was handled very badly. Not by me, but by my neurologist. I was told I had a dementia (though not Alzheimer’s), given a prescription, then sent home to absorb the news alone without even contact details of my local Alzheimer’s Society to discuss my feelings with. Unfortunately my experience is the norm rather than the exception for many of us.
Along with others I have found family and friends rather distant post diagnosis, but then at certain times in life you are presented with an opportunity to assess who are the people in your life that are genuine and who are mere fly-by-nights. Please note that I view this experience as an opportunity rather than a loss in my life. I can’t choose whether I have dementia, but I can choose how I deal with it. I choose positivity, which is why Dementia Alliance International has come to mean so much to me.
For several years prior to my diagnosis I had recognized that my health was on a downward trajectory. Like my GP I put it down to severe depression. Things became so severe that I lost my career as a social worker. Nothing like the caring professions for being not so caring when it comes to their workers. I remained unemployed for years. Now, having this unfortunate label means that the world of paid employment puts me firmly on the scrap heap. However, as a volunteer worker, running my own Young Onset group I have found a new role in life which involves working more than full time hours and doing this quite successfully.
My advice would be don’t let anyone tell you that because you have dementia that you can’t hold down a job, study, be an educator, be creative and be a useful member of society. There are many examples of this within DAI.
You are no less a person than the day before you were told you were living with dementia. I am still a mother, a grandmother and the friends I have in my life now are the best I’ve ever had. I would love to think that I would still be around when my grandson starts his own family, but now quality matters more to me than quantity.
I take my inspiration from my fellow DAI members and hope in some way to play my part in making positive changes, both for those currently with dementia and for those to come.
On day four of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our USA members stories of living with dementia. Thank you Mike, for allowing us to share it here, and for being so actively involved in one of our peer to peer support groups, in our Action group, as well as representing DAI as a keynote speaker at the ADI2018 conference in Chicago.
I STILL have a life to live
Hello, my name is Mike Belleville. A little bit about myself, I was diagnosed with younger onset Alzheimer’s when I was 52 ½, and 2 ½ years ago my diagnosis was changed to Lewy Body Dementia. I am now 57 ½.
My wife Cheryl and I were obviously shocked to get such a diagnosis and I have to admit I went into a deep depression afterwards. I was very involved in my community at the time, serving on a number of our town’s committees where we lived.
All that stopped after the diagnosis and after a few months my beautiful wife of 37 years said enough is enough. How fortunate was I that she decided to call our local Alzheimer’s Association chapter here in Massachusetts, USA. We met with a consultant, started to attend support group sessions together and went to their education programs.
It was there that they made me realize that I STILL have a life to live, I can STILLlearn new things, I can STILLdo the things I enjoy doing and most importantly that I STILLhave a voice and I plan on using that voice for as long as I can. I tell people that the Alzheimer’s Association saved my life (obviously not the literal sense). But they gave me my voice back and I am now trying to use it to advocate for all of us who are living with any form of dementia and our care partners. I want to let people know who may have been given this diagnosis that you can still live a very productive meaningful life and that you still have so much to offer to others, I also want to educate people who may not know about the disease to help eliminate the stigmas that are associated with it.
I love movies and one of my favorites is Shawshank Redemption. I love Morgan Freeman (I wish I had his voice LOL) he repeats a line in the movie that Timothy Robbins told him:
“Get busy living or get busy dying.”
I have chosen to get busy living. I have been fortunate to be involved with a number of organizations but nothing quite like Dementia Alliance International.
DAI is helping people like me and countless others use their voice to help make a difference. They offer educational seminars, online virtual support groups and are leading the way Internationally in getting the stigma reduced when it comes to what people think about when they hear the word dementia and even more importantly they are on the front lines in getting world leaders and organizations to rethink how they are treating people living with dementia. Thank you, DAI, for helping all of us to continue to live a life most people think we couldn’t after getting our diagnosis.
Hello everybody, my name is Mike Belleville. I am a member of the Dementia Alliance International or DAI, which is an online group of people with dementia determined to demonstrate that a person can live well with dementia.
DAI members are here at the conference, and are eager to speak to you, so when you spot one of us, please come up and say hello. We’re all happy to answer any of your questions and share our own journeys with you.
Marianne Schulze (2010) explained that It is our right as disabled adults to be treated respectfully and as whole human adults with access to all aspects of life.
1. We miss our healthy brains. Try driving across the country in a four-cylinder car with only three cylinders working right. You’d be frustrated, fearful, and exasperated the whole time. Now imagine what it is like to “drive” a brainthat works like that. Is it any wonder that we get so irritable?
2. The best technologies and innovations improve one or more parts of our brains to function nearly the way they worked before our diagnosis.
3. You can help grant our fourth wish, we need our service providers, and our governments to help minimize all the stressors placed on our family and friends by our dementia. Please do!
We’re not naïve enough to think that technology can prevent families from experiencing the financial devastation that dementia can cause, but we believe that technology can minimize its impact early in the disease process and allow people to live at home longer. Let’s talk about three types of promising technologies.
Sociologist Read Bain stated in 1937 that, “technology includes all tools, machines, utensils, weapons, instruments, housing, clothing, communicating and transporting devices and the skills by which we produce and use them. Bain’s definition is still being used among scholars and social scientists. We at DAI believe in both the scientific and the social science definitions.
Sadly, far too few people with dementia ever get offered the soft technologies (with the exceptions of prayer and meditation) because soft technologies never occur to either their doctors or their caregivers. Yet their importance cannot be overstated. Volumes of research support the effectiveness of the “soft” approaches that are listed in the slide. No-one with dementia wants to have human relationships replaced only by hard technologies.
The late Joe Eades of Saint Louis was a plastic and reconstructive surgeon who spent several months each year in third world countries, surgically repairing impoverished children with facial deformities for free. But Alzheimer’s cut his career and his life short. Joe’s therapist wife, Virginia Eades, used her Christian beliefs and therapy training to assure Joe remained joyous and feeling loved throughout his Alzheimer’s journey. This picture of Joe was taken within six months of his passing.
Our favorite technology is living, breathing; furry tech. Furry companions often replace the people who disappear from our lives after diagnosis. These technicians have sensory skills, which we lack. Breeders have spent centuries developing animals who can understand, appreciate, and respond to human needs.
Furry technicians help us control our moods and reduce agitation. Pets listen, show appreciation, play, don’t judge us for our losses, comfort us, kiss us, keep us safe, take us home, and sometimes connect us with others. Dogs are often social catalysts throughout the disease process.
Morrison (2007) reported statistically significant improvements in blood pressure, heart rate and in depression, anxiety, perception of quality of health and loneliness.
The artist for the left side photo is, unfortunately, unknown.
Many tens of thousands of research investigations into noninvasive brain treatments + various dementias can be found on Google Scholar alone. We do not follow all these studies, although my collaborator Carole participated in two of them.
There are numerous other non-invasive treatments under investigation. A study in photobiomodulation through the Quiet Mind Foundation currently seeks participants. See the last slide.
And, of course, studies of much more invasive treatments like the implanted pacemaker for the brain exist as well.
“Nearly 90% of adults age 65+ want to stay in their current home and community as they age,” reports AARP. It is no different for people with dementia.
Additionally, for people with dementia, their online CONNECTIONS may delay their ADMISSION to expensive care facilities indefinitely.
The addition of online relationships can help reduce a caregiver’s burden as being the only social/emotional connection remaining for a person living with dementia.
Now I’d like to introduce an entrepreneurial proposal, but to get there, we need to take a brief side trip into neuropsychology.
Glenn Smith’s work at the Mayo Clinic studied the cognitive abilities of people with four different types of dementia: Alzheimer’s, vascular dementia, dementia with Lewy bodies, and frontotemporal dementia. We greatly appreciate his generosity in allowing us to share his findings. Smith aggregated the neuropsychological profile results of lots of people with these four different types of dementia.
The starred horizontal green line indicates the mean scores. If people all had equal ability in every capacity, they would score exactly at the mean (represented as being at the 0.0 level). But people aren’t like that. They have relative strengths and weaknesses among the cognitive domains like verbal comprehension and learning retention shown within the blue box.
As you can see, the four dementias reflect WIDELY different cognitive capacities. For example, people with Lewy body dementia bottom out on one subtest where all three other types have results close to average, right along the mean. Smith’s study was published in Nature Reviews Neurology on Nov. 1, 2011.
It is most important to keep in mind the extreme variance among the types. Tools designed to help people with one type of dementia may be of no help to people with a different type of dementia.
Now we can talk about a potential entrepreneurial opportunity.
Most people know what a smart home can do for them. Deloitte describes many of them.
However, we have a vision of what a smart home retrofit for people with dementia could be.
What if there were a wearable device, a sensor that could detect agitation and anxiety? And what if that sensor could trigger a smart home to initiate a predetermined response tailored that person’s need. For me, it could be turning on my TV and playing a video of my wife or better yet, sending my wife a text message alerting her of my agitation, and she could call my TV that would be equipped with a Webcam so we could have a conversation.
For someone else, it could be automatically turning on a Bluetooth speaker and playing a favorite music playlist. I hope you can see that the possibilities are endless. There are hundreds of sensors and hundreds of “what ifs”. I haven’t even gone into some of the safety features that could be incorporated into a smart home retrofit.
One does not have to move to get into a smart home. We believe that one’s existing and already familiar home can be made smart with a retrofit. Those explorations can offer innovators and entrepreneurs intriguing possibilities.
Just for grins, you can search You tube for “smart robots 2018” to see the newest bots, something else we don’t have enough time to delve into.
We need new SPECIALISTS – dementia “outfitters” — to help tailor the components of a smart home retrofit to the needs of that individual. A recent slide showed some strengths and weaknesses of people with just four types of dementia. That is a starting point for an outfitter, but those are not profiles of one person.
A dementia “outfitter” would make use of an individual neuropsychological profile, the needs of his/her family and the outfitter’s own detailed personal notes as a clinical observer. An outfitter could then purchase the equipment needed and install the equipment. Then train the person and his/her family how to use their new smart home. An outfitter is a medical/technical and a behavioral dementia specialist.
Outfitters will combine training in cognitive neuropsychology with training in technology installation, in teaching, and maybe a few other things. Few if any people have all those skills. However, a nimble-minded entrepreneur willing to cobble together such diverse training would be a trailblazer in an entirely new specialization.
MarketsandMarkets predicts the Smart Home Market to be worth 137.91 Billion USD by 2023.
Now, please study the profile of one of the four individuals described in this slide. Panelists, you do this as well, please. Can you list three existing technologies that should be in a smart home retrofit for this person. Think of two that have not been developed yet — but should be. LEAVE AS MUCH TIME AS POSSIBLE….
OK. Are you challenged? Do you see the huge need and the entrepreneurial opportunity? Can you see the potential to keep a person living with dementia living at home longer?
I would love to pose a challenge to anyone here that may have the authority, the expertise, and the financial means to help develop dementia outfitters. You can team up with a neuropsychologist, a person with dementia, another techie, and a learning disabilities teacher to make a difference in the lives of people with dementia and equally as important, in the lives of their families.
We hope you can see how “Dementia outfitters” can bring back an element of HOPE to people who need it most.We are not looking for technology to replace the things that we’ve lost the ability to do, rather we want it to enhance our lives allowing us to continue to live in our homes for as long as possible and with the respect and dignity that we all deserve.
We also believe that this new potential opportunity cannot be fully realized without the input of experts and those experts are people living with dementia.
Thank you for listening and for being here, you were a great audience.
On day three of World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our Taiwan members stories of her life living with dementia. Thank you Amy, for allowing us to share it here, and for so actively working with Taiwan and TADA with their incredible work on uman rights for peoplel with dementia and their families, and to foster and empower self advocates in Taiwan.
My second life
This video is the story of Mdm Hui-Mei Su (Amy in English, although she is also known as Aunty Su in Taiwan), who was diagnosed with younger onset dementia in 2012, at the age of 62. Her supportive husband Mr. Chuan-Der Hsu (Peter) is by her side throughout most of the video.
Amy is a member of DAI, and the very first self advocate in Taiwan. This video briefly shares her story of diagnosis, and how she felt so devastated, she wanted to end her own life; however she did not want to burden her husband, and her daughter also pleaded with her not to. It shows a rare insight into the lived experience of someone diagnosed with dementia in Taiwan, and the transformation from devastation, to one of living a ‘new life’.
Amy is an artist, and although she can no longer paint the style of art prior to her dementia, she still produces beautiful art. She may no longer be able to work out how to use the MRT (train system), and gets lost sometimes on her scooter, and even as trouble cooking now. We hope to feature some of her at our online DAI Art Exhibition later this month, which you can register for now.
She often can no longer remember the names of her friends and many other things, and there are other changes to her abilities, she can still live a very positive life, in spite of the sadness and changes initially brought on by dementia.
In the beginning it was not easy, but she has chosen to become very active, and living positively again; Amy has become as involved as much as she possibly can, through continued art, singing classes, other new learning, gardening, and many other activities. Since April 2017, she has also become an active self advocate in Taiwan.
By focusing on what she can still do, including new learning such as singing a song in English, like almost all self advocates, Amy has been re-empowered to live positively again, and is now speaking publicly, advocating for better services and support for all people with dementia in Taiwan.
On day two of World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of his life and living with dementia. Thank you Howard, for allowing us to share it here, and for and actively being involved in one of our peer to peer support groups, as well as representing DAI as an advocate in the UK.
Hello, my name is Howard Gordon.
I worked in healthcare for nearly 20 years but at the beginning of 2014, I began to notice changes; I was forgetting regular tasks, getting lost in familiar places, getting confused and doing things out of character.
I moved from Acute Medicine to Outpatients in 2015 as I realised I could no longer safely work in a ward based environment but the challenges continued to grow.
Although I had plenty of Dementia training over the years, it wasn’t until I saw a television programme about Chris Roberts and his family that alarm bells rang.
I went to my GP and she did blood tests including checking my Thyroid but when I went back the next week the tests were clear and after cognitive testing it was her opinion that I may have Alzheimer’s.
Three months later I saw a Neurologist and over the next 6 months I had MRI and SPECT scans, more blood tests and four and a half hours of Neuropsycholgical testing and during this time my Fathers cancer came back after 26 years.
In March 2017 came the diagnosis, younger onset Alzheimer’s and Frontotemporal Dementia, two leaflets, some information about research, instructions not to drive and to go home and make my Will and Power of Attorney.
As we walked out of the room there was nobody there and so it would be for about a year.
During 2017, one of my daughters and Grandson nearly died of Carbon Monoxide Poisoning, my Grandson had a cancer scare, my Father passed away and in September I was signed off work and my neurologist said she didn’t know how I was still standing.
I began to engage on Twitter receiving support and encouragement from around the World and by March 2018 I decided that I would have to find my own way through my journey with Dementia and it was through Twitter I found out about the A Good Life with Dementia course run by Damian Murphy of Innovations in Dementia CIC.
Originally, my wife and I only went for one session but it was like a light bulb moment for both of us. In two hours there, we went from Prescribed Disengagement to finally being engaged with life again. With Damians agreement I went along for the rest of the course, even though it meant undertaking a 130 mile round trip to York.
I had begun my blog just as a record of my journey before the course but after it began to expand into support, information and articles about topics relevant to Dementia.
Hopefully, I still have a long journey with Dementia in front of me but I hope that with the support of my extended family of DAI and others, I can continue with the work I am doing for some time to come.
I will always be grateful to the course in York and to the support and opportunities that Dementia Alliance International have given me.
Howard is very actively involved as an advocate; he is an active member of Dementia Alliance International, and he is also a member of the following organisations or groups:
Alzheimer’s Society 3 Nations Dementia Work Group
Alzheimer’s Society Research Network
WEGO Health Patient Leader
Global Disability Summit 18 Partnership Forum
DEEP UK SHINDIG Group
Disability Rights UK
Royal College of Psychiatrists Memory Service National Accreditation Programme
South Yorkshire Dementia Research Advisory Group
Young Dementia UK Network
Young Onset Dementia & Alzheimer’s (YODA) UK
Research Participant and Steering Group member
Admin “Living with Dementia” Facebook Group
As part of our World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, on day 1 of #WAM2018, we share Dick Watsons story. Thank you Dick for allowing us to share your story; DAI is proud to have you as a member, and actively involved in one of our peer to peer support groups.
To begin, my name is Dick Watson. I live in Vancouver, WA and I am a member of Dementia Alliance International (DAI). I’m 61 years old and was diagnosed with young onset Dementia 6 years ago. The diagnosis was of course hard. Add to that the fact that I have lived with extreme chronic pain from breaking my back twice 27 years ago and having a spinal cord injury as a result. It’s been a long hard road. But I have kept positive through this all.
There is reason to tell about about my back. That is because for about 22 of those years I was on extremely large doses of opiate pain medication. I even had a pain pump with fentanyl going directly to my spinal cord. At removal of the pump I was at morphine equivalent dose of 2000mg/day. I will say this now.
The chronic pain stuff effects the Dementia I think, and not because of the meds but because of pain itself.
Fast forward to 6 years ago when I was diagnosed after complete physical and blood work, and 2 neuropsychological tests a year apart showed Young Onset Dementia. The Dementia was caused in a major part by 20 years of high dose opiate use, was my Dr’s guess. Worst day of me and my wife’s lives ever. We went home numb from the Dr’s. We were told to go see Alzheimer’s.org so I started learning all I could about this disease, and mine in specific. After a bit of time we did all the legal stuff with moneys, property that was joint now in my wife’s name only. POA’s done, Wills changed, Social Security set. Did all the needed things.
The first 5 years of my dementia went by and I was living very well with my dementia. We traveled, bought art to keep me engaged when needed, saw and spent holidays with family, you know life stuff. We learned to adapt to this dementia thing well. We are very good at adapting. We were told 3-30 years. In reality average is 6-10 years till death. I am now in year 6 and am having many more short term memory issues, as well as more cognitive issues. Well into mid stage dementia. The biggest loss this year was in April. I had been having increased difficulty speaking. Forming words and talking were hard. Then one morning I got up and did my normal routine. My wife got up and I went to say good morning and literally babbling came out. No words, just sounds. We were both taken by surprise. We thought maybe I needed to eat and get my meds in me. No help. So now it’s been 5 months and the only thing I’ve said is to my wife, ” I love you” twice, and that shocked both of us.
Both of us were elated when that happened.
Adapt is a strong word in my house. That’s what we have done. It’s what we do, and damn well I will add. I communicate using my cell phone notes app. I found and downloaded a Text to Speech app to talk when I need to. It’s cumbersome but it works for what I need. I lost the ability to write by hand a long time ago. This makes a communication device a must, I have no other way to communicate.
Needless to say, losing my speech has changed the speed that it takes to have a conversation, much slower. There are a ton of challenges to face. One that gets me is not being able to talk during heated conversations. Or when I get frustrated that I am not making myself understood. I get jumbled up and can’t talk. So I say a bunch of sounds.
Yes this is frustrating as hell. Yes it has effected who will spend time with me. Yes it’s slowed me down even more. Yes I hate it. But we all know Dementia will take what it takes when it takes it and we have no control over it.
However I do have a choice of how to react. I have my moments of darkness and depression. I’m on meds for that. But I have more moments of seeing good. I pay attention much more, don’t always remember what’s said. I am very good at reading expressions and body language which sometimes says more than words and is truthful mostly. I can’t be told I’m running at the mouth. There’s more that this but I can’t remember them.
All through these past 27 years for the most part I have chosen to be positive and active. I must say that my wife has been a huge part in this, and our closeness of a marriage, having 37 years of marriage tighter than most. She is the best care partner there is. Without her I would not make it through this.
I was taught a ton of ways to mentally control some of the pain, and still use some of it. I also have a bunch of friends, some who have even committed to be with me and my wife till the end of my journey. I don’t drive but friends pick me up to go to coffee, my wife drives a lot as well. We still go out to social events, funny plays, wonderful dinners and go to very cool places. We go to the beach where I can rent a power beach wheelchair. This allowed me to walk the beach with my wife after 15 years of not being able to. All this is helping me hang on longer. My faith is a big part of helping with the emotions and losses. I set up a Dementia support group at my church to help those in the same position we are facing now. The fact that I’m a positive kind of guy also helps, a lot. And besides, the other alternative would be allowing the Dementia to go faster.
So what else is there but to fight the Dementia and live my life to the fullest I can while I can.
Besides, I’m one stubborn SOB and am staying long as I can. Not done yet!!