Following on from the World Alzheimer’s Month series of #Hello blogs, we continue to share our members stories. Peter Berry from the UK has been doing a weekly video podcast about his experience of living with dmentia, now up to his 70th. This one was focuses on the difficulties of a diagnosis, and stigma. Thank you Peter for giving us permission to share your 25th video here.
During World Alzheimer’s Month, we featured a daily series of #Hello blogs, personal stories frrom DAI members from around the world. Many reported how educational and helpful they were, and UK blogger and dementia consultant Beth Britton asked for permissio to use some of them in a training session she was hosting. The following is Beth’ s story’.
‘Learning from Personal Stories’
DAI bloggers feature in MacIntyre’s Dementia Special Interest Group Meeting
As a former care partner to my dad, who had vascular dementia for 19 years, the work of Dementia Alliance International is close to my heart. So, when one of my social care consultancy clients, MacIntyre, asked me to run a session during their Dementia Special Interest Group meeting on 3 October 2018, my source of inspiration was DAI’s ‘Hello My Name Is’ World Alzheimer’s Month blogs. Kate Swaffer had kindly alerted me to this series of blogs via twitter in early September 2018, and the chance to share these stories further wasn’t to be missed!
Before I tell you how my session went, I thought a quick history lesson might be helpful…
I began writing, blogging, campaigning and then training and mentoring consultancy work after my dad died in April 2012.
I first met Kate in 2013, having initially connected via twitter (you can follow me on Twitter, and I have met and worked with other DAI members in the UK since.
‘Learning from Personal Stories’
My October 2018 Dementia Special Interest Group Meeting session
Firstly, I should say I am extremely grateful to DAI members Kris McElroy, Dick Watson, Jennifer Bute, Julie Hayden, Carol Fordyce, Phyllis Fehr, Davida Sipe and Nina Baláčková for allowing me to print and share their blogs for my ‘Learning from Personal Stories’ session during MacIntyre’s October 2018 Dementia Special Interest Group meeting. Also, huge thanks to Kate Swaffer for kindly liaising with you all on my behalf – without this combined support the session wouldn’t have been able to happen.
After a brief introduction from me, we watched Kris McElroy’s film . I then picked out a couple of quotes from Kris’ blog, including:
“While I have been adapting, adjusting, and fighting through challenges, barriers, stigma, and stereotypes related to my disabilities since childhood; life with dementia has brought its own unique set of challenges, barriers, and stereotypes. Barriers such as access to resources and quality life/health care options; and challenges with areas such as spelling, driving, comprehension, memory, multitasking, confusion, and navigating day to day life.”
I felt that this was a really important quote because so many of the people with learning disabilities that MacIntyre support have faced similar challenges, barriers, stigma, and stereotypes throughout their lives too.
We then moved into table work. With staff members sat around 5 tables, I shared printed copies of the blogs written by Dick, Jennifer, Julie, Carol and Phyllis, for staff to read, discuss and pick out quotes from.
After 15 minutes we had a feedback session, in which a staff member from each table briefly told each DAI member’s story, and shared a couple of quotes that had stood out in their table discussions.
Along with all of us empathising with the struggles we heard about around diagnosis and post-diagnostic support (one of the great challenges for people with a learning disability is getting a timely diagnosis, and staff being believed when they go to doctors expressing concerns about changes in the person that they are supporting), some great slightly off-topic discussions also sprang up, including about the need to communicate sensitively and compassionately with people who have a learning disability and dementia.
A huge plus in our discussions was having DAI member Tracey Shorthouse with us for the whole of our meeting. When it came to my session, Tracey was fantastic at contributing to the conversations we had about her fellow DAI member’s blogs. Having heard Tracey speak earlier in the day about her struggle to get a dementia diagnosis as a nurse, reading about Jenniferand Julie’s experiences as former healthcare professionals really brought the point home that no matter how much you may know professionally about how health and care systems work, when it’s you who needs the help and support you are often no better off.
We were running out of time after all of these great discussions, but I was able to briefly speak about Davida’s blog and the points about medication, and Nina’s blog made us all smile with her anecdote about potato soup.
Overall, MacIntyre staff were really engaged and enlightened by the DAI ‘Hello My Name Is’ blogs, and sometimes shocked too.
The end of this quote from Phyllis’ blog probably drew the biggest gasp and collective head-shaking of the day:
“It wasn’t till I was 53 that I received a firm diagnosis, after going through a two-day battery of testing. I will never forget that day or maybe I will, but I feel like it has been branded in my head. You see on that day we were escorted into the gerontologist’s office. Once she entered the office, I felt like I no longer existed. She looked at my husband and spoke to my husband. As far as she was concerned, I was not there. She told him that I had “early”-onset Alzheimer’s and that I was still doing well. She instructed him to bring me back when I couldn’t dress myself.”
I know from staff feedback that the session was really enjoyed, and that’s only possible because of the generosity of DAI members in sharing your blogs with us, and for writing with such honesty and candour that means there is so much for professionals to reflect upon.
Everything I do in my work is about learning from the experts: people living with dementia themselves and those closest to them. That is where it all began for me with my experiences with my dad, and I hope that inspired by the fantastic session DAI members supported me to run for MacIntyre’s staff, other training providers and health and care organisations will realise the value of working with the REAL experts in the future.
Thank you DAI.
MacIntyre were established in 1966 by Kenneth Newton Wright, the parent of a disabled child, and have grown to become a leading UK charity, highly respected and committed to setting standards and increasing choice. MacIntyre provide learning, support and care for more than 1,500 children, young people and adults who have a learning disability and/or autism, at more than 150 services across England and Wales. Their diverse range of services includes registered care homes, supported living, outreach, accredited training schemes and lifelong learning services, as well as a residential special school and further education provision.
I’ve worked with MacIntyre since 2013. In 2016 they were awarded a significant grant from the UK Department of Health and Social Care’s Innovation, Excellence and Strategic Development Fund to improve the care and support of people with learning disabilities who have dementia or are at risk of developing dementia. MacIntyre’s Dementia Project was born https://www.macintyrecharity.org/our-expertise/dementia/the-macintyre-dementia-project/. For readers who aren’t aware, people living with a learning disability are more at risk of developing dementia as they age, and if they do develop dementia, it’s usually as a younger person (under 65 years old) and it often progresses rapidly. Follow MacIntyre’s Dementia Project on twitter here…
I’ve introduced many people living with dementia to MacIntyre for them to come and speak about their experiences, ensuring these meetings remain rooted in personal stories. Dementia Special Interest Groups are attended by around 30-50 staff from across MacIntyre, along with guest speakers and sometimes other individuals with professional or personal interest in the synergy between learning disabilities and dementia.
Special thanks from DAI to Beth Britton, and to MacIntyre and their team for engaging with our members in this way.
On the final Day of the #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature Jerry Wylie, DAI’s Vice Chair and an advocate from Philomath, Oregon, in the USA. Jerry is a committed and very active board member, and supports two of our peer to peer support groups, as well as co-hosting our Action Group and wekly Brain Health Meetings.
Thank you Jerry, from everyone, for saying hello again here to support this series, and for all that you do for DAI and others. Jerry has also set up a local face to face support group where he lives, which now has more than 20 members. We are very proud of him, and grateful for his hard work. This is his story.
On Day 29 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate, Christine Thelker from Canada. Christine is an incredibly active advocate and DAI member, and supports one of our CA/USA support group. She was also featured in our online Art Exhibition this week!
Thank you Christine for sharing your story by saying hello here, and for all that you do for DAI and others. We love you too. Special thanks also to Mike Belleville for finalising the production of Christine’s video, and upoading it into our YouTube Channel.
It’s almost the end of World Alzheimer’s Month, and we have been sharing our #DAI daily members #Hello is stories. In fact, there are so many in our draft folder, we will be continuing them well beyond #WAM2018. These stories have helped raise awareness not only of dementia, but of the unique and individual experiences each person has with a diagnosis of any type of dementia.
Today, we share Veda Meneghetti’s story, who was supported by her partner Lynda. DAI member Mike Belleville produced the video which shares some of Veda’s beautiful photographs, with her own music, and an overlay of her story, also copied below. Thank you Veda, and also Lynda and Mike for todays blog.
“Hello, I’m Veda Meneghetti. I was born in Adelaide, Australia to an Italian migrant father and an Australian mother. I got called “Veda Spaghetti” at school.
I hated school, but I was a “cool” teenager. My mother worked in a department store so I always had great clothes. My dad was a stonemason who worked in marble. He kept a wonderful vegetable & fruit garden and I had animals around me….I love animals.
I liked art but hated everything else and left school at 15. They’d made me feel stupid -I didn’t know I was dyslexic till 50 years later. I taught myself to read & write well, but I can’t read a music score.
I’d been playing guitar & singing since I was 10. I went on TV for a young talent time thing & then became lead vocalist for a couple of Adelaide bands. We started touring in Australia and then went overseas when I was 21. I met up with a girls’ band and continued to work with them as resident musicians in Asia, Africa and Europe. We came back to Australia when I was 27 and became the Party Girls band. We toured a lot, made an album ourselves, appeared on TV and wrote a lot of our own music. In 1985 we were the only girls band to kick off the Australian leg of the 1st. world simulcast, Aids for Africa. I did lead vocals and rhythm guitar.
When the band split up I started my own band, Safari, which played regularly in Sydney in the 90s. I kept on writing songs though I retired from performing. My last 4 songs were recorded in 2010.
In 2012 I was diagnosed with Primary Progressive Aphasia (logopenic). I’m losing language so my partner Lynda is writing this for me. I can’t read or type/write anymore, but I understand.
I joined DAI after I met Kate Swaffer. We did a presentation together in Kiama for Dementia Awareness Month 2014. Lynda and I became members of the Kiama Dementia Friendly Community Advisory Group, the #KiamaDAGs. We get together socially with other people living with dementia in our region, run community education workshops and sometimes do media coverage for the project. Lynda and I have presented at a few conferences, using my songs and our photos. We’ve made a lot of new friends who have dementia. We still get involved in research. I’m not ashamed to say that I have dementia – people need to know what it’s like.
I just want to live in peace. I’m happy living two hours from Sydney – it’s beautiful here. We go back to the city now & then to visit friends, because now most people have stopped visiting us.”
On Day 27 of our #DAI#Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate, Wally Cox. Wally is an active advocate and DAI member, and co hosts one of our USA support group. Wally also featured in our online Art Exhibition just a few hours ago! Thanks Wally for sharing your story by saying hello here, and for all that you do for DAI and others.
On Day 26 of our #DAI#Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate G. Dallas Dixon from the USA. Dallas is often known as the The Dementia Dude, or aka Danger Presley by his friends! It is a recording of the speech he was accepted to give at the 2018 ADI Conference in Chicago, “Humour as a psychosocial intervention for dementia.”
As Dallas was unable to attend, he recorded it instead, and has granted us permission to get to know him through this vlog in our #Hello series. You will be entertained, but there are some very serious messages as well. Thanks Dallas!
On Day 25 of our #DAI#Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate Bob Murray from Canada.
Bob is also an avid golfer, and a very active member of DAI, attending the weekly DAI peer to peer support groups, our Action Group, our monthly Cafe Le Brain, and the weekly Brain Health meetings. We thank Bob for sharing his story with us here.
Let me help you understand…
Hello, my name is Bob Murray. I have ‘lived well’ with arthritis, cancer, a lousy memory, a hearing impairment, depression and more, and I still live with these health issues, the least of which is ‘ageing’. I now have a dementia and intend to live well with it wherever the journey takes me. I also want to help you understand.
In 2013, when I was 74, now five years ago, I told my family doctor that I felt that my short-term memory was worsening – ‘senior moments’ were coming more frequently. She did a quick ‘clock’ test and suggested that I get a SPECT brain scan. The result was called ‘mild cognitive impairment’ (MIC – a dementia) which can progress to frontotemporal dementia – a disease of the brain with no known cure. Since then I have read everything that I can find out about MIC and Dementia. Some say the worst of all the dementias is Alzheimer’s Disease (AD). Scary stuff. My wife of one year was probably more scared than me.
I have had a good life and intend to continue the same into my 90’s. Genetics means a lot to me. I take after my father who lived for 52 years with type one diabetes and died at 89 of a stroke. His 3 siblings lived well into their 90’s. My daughter got type one diabetes when she was 7 and is now 46 years old and is doing well. Diabetes skipped my generation. I am the fourth generation of Murrays in the printing industry and my son continues this tradition.
My dementia is progressing slowly
I’ve been Lucky. My dementia is progressing slowly. My ‘senior moments’ are increasing in frequency but, with the help of my caregiver, my wife, I am still ‘living well’ with dementia quite enjoying my life.
There are 2 Doctor’s work with Dementia that I follow closely – Dr. Dale E. Bredesen and Dr. Norman Doidge. If you were to Google these names you will discover a great deal of information re the reversal or delay of cognitive decline and the brain’s way of healing. These are my guidelines for my life in my future. The keys are exercising and nutrition and everything in moderation
I’m now 79 years old, I’ve had a good life, I am LIVING WELL WITH DEMENTIA and intend to continue into my 90’s.
When I was 78 years old my family doctor and the head of our memory clinic and my local Alzheimer’s Society told me that there was nothing they could do for me – I was doing well. We moved away from the big city (Toronto) to a rural small town (Seaforth) in 2015 for it’s peace and quiet. Here I was introduced to the local Alzheimer’s society for counselling for me in Dementia and Care Giving for my wife. Time well spent!
I was introduced to their educational specialist who suggested that I look up the blog of Kate Swaffer who is founder and CEO of Dementia Alliance International (DAI). This organization is restricted to those with dementia. Currently I talk weekly with others over the internet for 2 – 1 hour sessions throughout the world. I was no longer alone. Highly recommended – no cost.
From my time with depression (my early 40’s), I learned that writing about myself was very therapeutic. I met with our local Alzheimer’s Society and we developed a strategy that I would tell my story with dementia and they would publish it in their monthly Alzheimer’s e-newsletter.
Thus was born “My Voyage with Dementia”.
This September’s column was my 11th column and I am also being published in a ‘opinion’ section of a local weekly newspaper. All the columns are on this blog, My Voyage.. This column is now being published on the South Western Ontario website.
Seeing my opinion column in print is very exciting.
Coming up with monthly columns with my personal experiences on dementia has not been as tough a job as I had anticipated. Going weekly may be in my future – it excites me as a great challenge. I meet with the newspaper in 2 weeks to decide on a win-win course of action. Stay tuned. In the meantime please read my past columns – I appreciate comments. This challenge seems to be slowing the progress of my dementia. Time will tell.
Keeping my brain fully engaged is important to me. Incidentally, since starting to learn to play the saxophone my golf game has improved from the mid 90’s to the mid 80’s. If you are a golfer you know that golf is a brain game.
Welcome to Day 23 of World Alzheimer’s Month – also referred to as Dementia Awareness Month in some countries. Today, we feature a DAI member from the UK in our #DAI #Hello my name is series of daily blogs for #WAM2018. Thank Tracey for sharing your personal story.
I love my life…
Hello, my name is Tracey Shorthouse and I was diagnosed with younger onset of Alzheimer’s Disease and Posterior Cortical Atrophy in 2015 at the age of 45.
I was relieved to get that diagnosis as I thought I had MS.
Like a bad nurse I was, I googled my symptoms and thought the worse. It’s a funny thing perception, what we think we can cope with and what we can’t.
I was working as a community staff nurse with the district nurses and I had started having problems about two years previously, with numerous falls, weakness down one side, balance problems, perception problems. Sometimes I couldn’t remember how to write numbers and I got behind on some paperwork. I got lost driving, I couldn’t remember how to drive a couple of times. It was scary stuff really.
The worse part was getting anyone to believe that there was anything wrong. In May 2015, I went into hospital because my Dr thought I had a brain tumour and the hospital thought I had had a stroke. I had numerous tests and scans including MRI and CT of my brain and nothing showed so the neurologist thought I was having a stressful episode and put me on Amitriptyline with no follow up and discharged me. (I have since found out that I did have a cerebral bleed back in 2015, but it wasn’t picked up, a brain scan last year saw an old bleed from that time) I went back to work, and my memory was getting worse, I had no clue what I was doing or recall things. I went back to my GP who told me I was wasting his time.
So, I went to see a different Dr and requested to be referred to a memory clinic. Which this Dr did do, and I went to my first memory clinic in June 2015. I failed this and took part in a second more in depth memory test in August 2015 which I failed. My speech was getting affected by this time and I couldn’t remember how to pronounce words. I saw the consultant in October 2015, and he told me that he suspected I had dementia but wanted to run through a variety of blood tests and scans to be sure. Which I duly had. I saw him again in December 2015 when he gave me my proper diagnosis. He started me on Donepezil and stopped the Amitriptyline.
I retired as a nurse in May 2016 at 46 years old
I didn’t quite know what to do with myself once I retired. I felt a bit lost. My consultant had arranged for an OT to visit me regularly and she got me into going to different groups to find out what suited me. I go to a group called SUNshiners monthly, and its part of the DEEP (Dementia Engagement and Empowerment Project) network. Through that group I started doing talks about living well with dementia, about bringing awareness that dementia affects all ages and that we are all different.
Then it snowballed from there, and I found I was travelling to London and going to conferences and talking there. It makes me feel like I have a cause, and it encourages me to keep fighting. I also researched my dementia, so I could understand it. And joined a support group in London which has helped immensely at times. With PCA the brain changes what the eyes see, so what I see isn’t always what is true. It’s a learning curve always. I stopped driving soon after my diagnosis as I went through a red light after my brain told me it was green.
I’m still very active
I now have fingers in lots of projects. I am a member of Dementia Alliance International, I am part of a task force to make all hospitals in the UK dementia friendly, I am part of LEAP (Living Experience Advisory Panel) to do with Admiral Nurses, I am part of the Dementia Action Alliance, I have a new project hopefully starting soon to do with gym, sports and dementia.
I go to a gym three times a week, I was seeing a neuro physio who encouraged me to join. I love it. I have a set routine which my physio and trainer devised. I go to a balance class run by physios to hopefully help with my balance for the future. I go to a writing and art group that’s nothing to do with dementia. Its important to be me Tracey over me with dementia all the time. I love my life. I do so much more since I have been diagnosed, than when I was nursing.
My ethos in life was to help others, and still I do that just in a different way, hopefully it will continue.
It is Day 22 of the #DAI #Hello my name is series for #WAM2018, and we have the privilege of sharing a story written by our friend and colleague in Japan, Tomofumi Tanno. A few DAI members had met him in Kyoto, and long time pioneer advocate from Scotland has collaborated with him for a few years. Tomofumi also has published a book: Together with Tanno Tomi Fumiga – tanno tomofumi egao de ikiru ninchishiyou to tomo ni
Although it is my first meeting, “Alumni Association” … a journey in Chicago I met a dementia party in the world!
The international conference of the International Alzheimer’s Association was held in Chicago, USA, for four days from the 26th last month. I also came to Japan on 24th to attend.
I exchange opinions with the Australian, American, Canadian parties once a month using Web conferencing software “Zoom”. English is totally useless, but everyone’s friends and Japanese women living in Australia do interpretation and there is no inconvenience. As the parties often share, I always feel a conversation.
I heard that their friends participate in this international conference from their respective countries, and I decided to go. I made a lecture abstract summarizing what I want to tell everyone from Japan living with dementia in the Japanese, I translated it into English and entered it.
Finally a member of the web conference … cross the language barrier and interact.
An Alumni Association of people with dementia
Actually, I have never met with many of the members of “Zoom” directly. However, I always do not feel like having a face for the first time thanks to matching the face on the personal computer screen. I felt like I met my old friend again. Other people seemed to feel the same way, and they said “everything is like an alumni association”.
There was a rest room for the parties at the venue, and it was a place to interact. I had an interpreter interpreter by someone near me and talking with gestures, but I could break down immediately and I felt almost no wall of words.
“We are experts in dementia.”
Consciousness to change society
I repeatedly heard the word “Dementia expert” at the conference. Our parties living with dementia are the “experts of dementia”.
After a researcher’s presentation, the parties who came in the venue raised their hands and asked, “Does the research team have people with dementia?” Then, when I heard that there is not, I criticized himself as “Is there any meaning to invest funds for research done without listening to the opinions of the parties?” And stated, “By using us for better research; Please appeal. ”
Among the parties in Europe and the United States and Australia in particular, there is a strong awareness that “we change society”. It is hard to imitate me to criticize the research of scholars from the top, but I am impressed with the attitude of the parties and proud to participate actively with society.