Dr Laura Booi, PhD is a Gerontologist from Vancouver, Canada. For over the past decade her research has focused on improving the lives of those live with dementia, as well as those who support them. In our February 2019 “A Meeting Of The Minds” Webinar, she highlighted the work of the World Young Leaders in Dementia (WYLD). We thank Laura for her time, support of DAI, and expertise.
This is a network of young professionals in the field of dementia. WYLD members represent over 300 individuals, under the age of 40, from 30 countries, spanning across 6 continents, who are working together across disciplines and borders to develop innovative dementia solutions. The network supports the work of the World Dementia Council as well as other NGOs.
WYLD offers opportunities for professionals in the dementia space to connect and learn from others across disciplines and geographic boundaries. For more information please visit www.WYLDementia.org
Special thanks to Howard Gordon from the UK , for liasing with Paul Hitchmough who also lives with young onset dementia to be able to show the following performance at our ecent WRAD. The video also features dementia advocate Tommy Dunne who lives with dementia, diagnosed in 2009, and his lovely wife Joyce. It was produced by Crosstown Studios in 2018.
This really wonderful song and its message is for all people with dementia. We are not, and should not be forced to stay invisible.
Yesterday, Dementia Alliance International hosted their second World Rocks Against Dementia (WRAD) online event, and together, we ‘ Rocked the World Against Dementia”!
This image of Graeme Atkins, taken at an event some time ago, highlights his ongoing love of music, and we thank him for agreeing once again to open and close our WRAD event with two live performances, albeit via zoom!
DAI also sincerely thank all of the performers, who either performed new songs for DAI’s WRAD2019 event, or gave their consent to use a pre recorded performance.
DAI’s FINAL WRAD 2019 PROGRAMME:
We commenced with one minute of silence for our brothers and sisters in new Zealand, following the recent shootings there
Live performance by Graeme Atkins, Australia: Living Well With Dementia
Dr Al Power, USA: Happy Wanderer
Chris Madsen & Jenny Garbutt, Canada: In the Stillness
Veda Meneghetti, Australia: Living beyond my diagnosis of dementia
Chris Madsen & Jenny Garbutt, Canada: It shall always be
Vince Zangaro, USA: Better Man
Raukatauri Music Therapy Centre, New Zealand: Mahana
Residents living Care Centre, Levin, New Zealand: Edelweiss
Shoutsister Choir, Canada: Stand by Me
Dementia Drumming Group, Day Care Respite Centre, Australia: Mind to Beat, Beat to Mind -zfive Fives and We Will Rock You
Bay Samba, Australia: Mangueria
Daniella Greenwood, Australia: Something For Kate
Kate Swaffer, The World: Sadness
Kate Swaffer, Th World: Happiness
Paul Hitchmouth, USA: Invisible
Live performance by Graeme Atkins: The Minimal Mental Test
Graeme Atkins (pre recorded): Happy 5th Birthday to DAI
Below is a video called Better Man, which we were given permission to show as part of our WRAD event yesterday. It is a beautiful true story of two young carers, and the father with demetnia that they care for. This type of unconditional love is what makes the world a better place, and we are hopeful more families will learn from this, rather than walking away from the responsibility of caring for a family member or parent…
Christine Bryden was diagnosed with dementia aged 46, a single mother of three beautiful young daughters. Watching the video presentation today given in 2013, highlights very little has changed. In fact, in Australia, there is currently a Royal Commission in to the quality (or rather, lack of quality) in Aged and Dementia Care.
However, today, on International Women’s Day, DAI wishes to recognise and acknowledge the incredible pioneering work of a remarkable woman, Christie Bryden, an extraordinary Australian woman who has been living positively and productively with dementia for well over two decades. Thank you Christine for being someone we can still learn so much learn.
The saddest thing of all, is that new advocates are saying the same things Christine said more than two decades ago…
Christine Bryden: Dreading being put in dementia prison
About DAI’s online WRAD2019 event: DAI ‘s vision is that all people with dementia are valued and included. We also have a strong philosophy that working together makes us all stronger, and by doing so, we can and will achieve more. Our 2018 “World Rocks Against Dementia” (WRAD) event was hugely successful, and we are hostig another online event for WRAD this year.
This year, we have many new and original songs, performed just for DAI’s Rock Against Dementia online event, and we thank each and every performer for their support. Many of these songs will really speak to your hearts and souls.
We don’t have a fully finalised program yet, but please know it will be fun. We have some live performances (yes, via Zoom), and like last year, there will be time to chat and ask questions about what is it like living with dementia along the way.
Credit goes to Wayne Mesker who started Rock Against Dementia (RAD) in the USA, and Norrms McNamara in the UK whose idea it was to take the event global. By collaborating together, these two men have helped the World Rock Against Dementia (WRAD) all around the world. DAI is proud to be part of the movement, as we all know music is an important part of our lives, and as discovered by the Alive Inside Foundation, is also a powerful change agent for improving the quality of life, memory recall and pure joy for people with dementia.
Opening and closing live performances are again byDAI member Graeme Atkins, who supported by his wife, is a wonderful example of living positively, alongside the very real challenges of a diagnosis of dementia.
Live performance by Graeme Atkins: Living Well With Dementia
Dr Al Power, supported by: Happy Wanderer
Daniella Greenwood: Something For Kate
Chris Madsen & Jenny Garbutt: In the Stillness
Dubghlas Taylor and the Bay Samba band, Brisbane: tbc
Chris Madsen & Jenny Garbutt: It shall always be
The ACH Choir, Adelaide: tbc
James McKillop: tbc
Veda Meneghetti and The Party Girls: Only Your Heart
Kate Swaffer: Sadness, followed by Happiness
Live performance by Graeme Atkins: The Minimal Mental Test!
NOTE: WE STILL HAVE MANY PERFORMANCES TO BE ADDED TO OUR PROGRAMME
Friday, March 22, 2019 – times (USA/UK/EU/CA):
11:00 am Honolulu
2:00 pm San Francisco USA / Vancouver CA
4:00 pm Des Moines/Chicago/Houston USA
5:00 pm New York USA / oronto CA
9:00 pm London/Glasgow UK
10:00 pm Paris, Munich, Amsterdam, EU
Saturday, March 23, 2019 – times (AU/NZ/JP/IND/TWN):
DAI is delighted to share this article about dementia and end of life issues, from the perspectives of Naomi Higuchi, a person living with lewy body dementia in Japan.
“Who should make decisions about end-of-life care when we are diagnosed with dementia? My answer is clear that it is the person himself or herself. Then, when should it be done? Probably before the person loses the ability to do so.
It is the only way to relieve those around the person, including loved ones and healthcare professionals, from the emotional conflict that may last even after the person’s death.
It is difficult for anybody to contemplate the loss of their loved ones objectively or calmly. No matter what they have chosen, the feeling of doubt will remain whether one has made right decision. The more medicine develops, the more this feeling will increase.
The evaluation of the decision between too much and not enough can only be made by the person who lives the life.
In terms of the end of life care of people with dementia, there is a strong negative image that those people are “kept alive without any understanding of what is going on.” But is it really true? It may be that people simply assume that persons with dementia do not understand anything, and therefore they do not even think of asking them what they want.
My grandmother taught me: It is natural that people get old and die
My grandmother had been bedridden at home for a long time. Even when we were told that “she cannot recognize her family anymore”, she still smiled at me and said, “Hi, Naomi…”.
However, eventually such responses decreased, she lost words and facial expressions, becoming something like a stone. No one could tell whether she still had emotions or not. This situation made me feel something similar to grief at her death.
However, one day when my mother was with her, my grandmother suddenly opened her mouth and said to my mother, “I am sorry for being a burden to you. It won’t last long, so please forgive me.” Her lack of responsiveness did not mean that she did not understand anything.
Every time when I visited my grandmother, I let my little children hold her hands and talk to her. Although we could not see her response anymore, I believed that she still felt something inside her with our visits.
She became a great teacher to my children by showing them how people as human beings age, suffer from illness and become increasingly vulnerable towards the end of life.
My grandmother passed away slowly and calmly, surrounded by her loved ones at home. It seemed that she finished her life with no pain, no worries and no fear. I felt that she returned to a vast place beyond time and space.
I felt a strange sense of relief to think that all creatures including myself will eventually go back to that place. Death is a natural process. It is not a tragedy, defeat or devastation. The thought that death was a part of the fundamental workings of all creatures, nature and the universe, calmed and comforted me.
Being diagnosed with dementia does not mean that the person suddenly loses all cognitive functions.Illnesses give us the opportunity to think about our life more seriously.
After I was given the diagnosis of Lewy Body dementia, I deeply thought about what I can do, what I want to do, what I should do and what would give me satisfaction the rest of my life.Many small concerns and worries which do not relate to the core of my life disappeared when I thought I might not remain in my current condition next year.
I decided to spend the rest of my life time building social awareness of dementia. This challenge made my life fruitful, and it seems that an enriched life has promoted the well-being of my brain and all my body cells.
Meeting with people who practice the approach of “treating the person as she/he is, regardless of dementia”
Through my advocacy activity, I came to meet with people who conduct ideal medical and care approaches. After my conversations with them, I can now declare with confidence that it is a complete misunderstanding that people no longer recognize anything when they have dementia.
I heard directly from a family member whose father (82 years old) clearly said that he wanted to have gastrostomy if it was going to improve his condition. People around him including the family were really surprised as they had thought that he was no longer capable of making decisions regarding his own treatment, due to advanced dementia from Lewy body disease.
A care method called “Humanitude” has been developed in France by Yves Gineste and Rosette Marescotti. The methodology applies a multimodal communication approach to convey respect for the dignity of the person.
Mr.Gineste, Director of Institutes Gineste-Marescotti and Visiting Professor at Kyoto University, told me face to face that his father, who had Parkinson’s disease, could walk until the day before he died, which means that with appropriate intervention, people can maintain their ability throughout their lives.
With the use of adequate care techniques, people who may appear to be extremely aggressive become quite calm, elderly people who were bedridden can start walking with assistance, and their contracted joints can be stretched again.
Tadasuke Kato, Director of the multifunctional nursing facility Aoi Care in Fujisawa, Kanagawa, Japan, was featured in a popular NHK TV documentary program. The facility admitted a woman who had been hospitalized due to Alzheimer’s disease and a gastrointestinal disease, and supported her to lead an independent life to the end. I heard that her last words were “(God,) please close my (life story) book.”
Both Gineste and Kato say, “Even if people have dementia, it is possible to have affectionate communication with them until the end of their life.” I believe that this is not a miracle that could only be accomplished by people like Gineste and Kato, but it is possible for anybody only if they make up their mind to face each person with real respect and affection.
However, it is never too early to think about the end of one’s life and write down advance directives. This should be done with sound knowledge of the advantages and disadvantages that the choices such as gastrostomy would entail, not based on vague impressions.
I used to have a very negative image of gastrostomy because I have seen people with gastrostomy in a nursing facility during their meal time. A nurse went into a room where 6 people were lying in bed in postures that looked uncomfortable and distressed.
The nurse connected a big bag, which looked like a medication bag for intravenous feeding, to each person’s gastrostomy tube. She came in and left without saying a single word. I felt the way she treated the people was cold and cruel.
However, if I were to develop a Parkinsonism as a part of Lewy body dementia and have difficulty swallowing from the early stage, I would definitely choose gastrostomy to take in enough nutrition, water and medication, and continue to go out and participate in activities as I do now. (Some people in the early stage of the disease may have to use gastrostomy even when they can walk on their own.) I could continue to eat my favorite food with my mouth even if the amount is less.
The meaning of gastrostomy can be very different depending on the user’s stage and condition. If we have this kind of knowledge and make decisions with the correct understanding, we will have less chance to regret.
Everybody should regularly take time to write down their own wishes for the end of life.
Everyone is at risk of having an accident or illness that could affect their speaking abilities, such as a car accident or stroke. I recommend everyone to write down their wishes for their end of life in advance, for example, when they renew their driving license, when they get their annual health checkup or when they see their primary care physician.
If it becomes a routine for everyone, we can avoid the situation in which the family must suffer from the burden of making medical decisions when the person is unable to communicate.
Some local governments in Japan encourage their residents to write down their medical information and keep it in the refrigerator at home so that emergency staff can find it easily. I think this is also a good place to keep the advance directives.
Thinking about our own death should enrich the rest of our life and make it more meaningful.
Now I am about to embark on a new enterprise of walking on the downward path of life, which would entail learning how to live with the assistance of others. It would be nice if I can, at the end of my life, choose to open the door and step into the next unknown world by saying “please close my book.”
Biography: Higuchi was born in 1962. She was diagnosed with Lewy body dementia at the age of 50. Until then, she was misdiagnosed with depression and suffered from the side effects of inappropriate medications for 6 years. In 2015, she published a book called “What happened in my brain” (Bookmansha). For this book, she won the 2015 award of the Medical Journalist Institution of Japan. The book is based on her diary over a 2-year period before and after the diagnosis. It was all written by herself without the help of a professional writer or an editor.
Higuchi is invited to give lectures in universities and academic conferences, such as the Japan Society of Dementia Research. She also continues to write short articles for a column in the medical website of a major newspaper company. As of October 2016, she maintains her capacity for logical thinking, even though she may occasionally suffer from various brain dysfunctions, such as space cognitive impairment, hallucinations and autonomic neuropathy.
We are thrilled to announce Laura Booi, PhD, member of the World Young Leaders in Dementia (WYDL) and Atlantic Fellow with the Global Brain Health Institute, Trinity College Dublin, has agreed to present at our February Webinar. Thank you Dr Booi!
About the Webinar: World Young Leaders in Dementia (WYLD), a network of young professionals in the field of dementia. WYLD members represent over 300 individuals, under the age of 40, from 30 countries, spanning across 6 continents, who are working together across disciplines and borders to develop innovative dementia solutions.The network supports the work of the World Dementia Council as well as other NGOs. WYLD offers opportunities for professionals in the dementia space to connect and learn from others across disciplines and geographic boundaries. For more information please visit www.WYLDementia.org and attend this webinar.
About Laura: Laura Booi, PhD is a Gerontologist from Vancouver, Canada. For over the past decade her research has focused on improving the lives of those live with dementia, as well as those who support them. Her doctoral thesis used ethnographic methods to explore the lived experience of care assistance in long-term care settings. She has also conducted large-scale projects examining the role of dementia related stigma within retirement communities. Laura is an outspoken advocate for people living with dementia and one of the the co-founders of the World Young Leaders in Dementia (WYLD). She is currently living in Ireland as an Atlantic Fellow for Equity and Brain Health with the Global Brain Health Institute at Trinity College, Dublin.
Wednesday, February 27, 2019 (USA/CA/UK/EU):
10:30 am Honolulu
12:30 pm Oregon Portland/San Francisco USA/Vancouver CA
2:30 pm Des Moines/Chicago USA
3:30 pm New York USA/Toronto CA
8:30 pm London/Glasgow/Dublin UK
9:30 pm Paris, Munich, Amsterdam, EU
Thursday, February 28, 2019 (AU/NZ/JP/SGP/ASIA):
7:00 am Adelaide AU
6:30 am Brisbane AU
8:00 am Sydney/Melbourne/Canberra/Tasmania AU
4:30 am Perth AU/Taipei TWN/Beijing
5:30 am Tokyo, JP
9:30 am Auckland, NZ
CERTIFICATES OF ATTENDANCE: If you are still waiting on a certificate of attendance from any of our educational webinars, please email us at [email protected]
OPTION: Our event ticketer, Eventbrite, charges us a transaction fee to cover fees and other processing costs, to securely process your donation. Please consider adding an additional small amount to your donation so 100% of your donation amount goes to Dementia Alliance International.
In case you or any of your advocate friends are struggling to stay on track, to keep speaking up, banging your (our) heads against the wall for a better world and support for all people with dementia, the late Susan Suchan reminds us well on why we MUST keep going, and how easy it is.
INCLUSION and the funding and disability support to be fully included, must be the way forward.
For example, no one with dementia should ever see a conference program without people with dementia as invited keynote speakers at the same time as all other speakers, and who are not there in person (as opposed to via zoom or Skype), especially if the event is promoted as being about them or including them.
It would have been the late Dr Richard Taylor‘s birthday today (perhaps tomorrow if you are in the USA), and to honour his memory, and his influence on the lives of so many people with and without dementia. we are re-posting a video of him speaking at the first ADI conference DAI members attended, in Puerto Rico in 2014.
Alzheimer’s from the inside out
Watch and listen at the 53 second point of this video… Richard talks with sincerity, but also with some cynicism about why he believed he was offered an award and invited to speak at the awards event. This is still happening to most people with dementia today.
Who would have thought someone would be jealous of having dementia?
Our 5th birthday party was held in lieu of our regular Cafe Le Brain and members meeting, with a high attendance. It was an open session, with everyone being welcome, and access details made publicly available. Most of our events last for up to 90 minutes; this one went for 2.5 hours, and only ended as those of us who were there the whole time we exhausted! People dropped in and out as they were able to, and everyone had a lot of fun.
Today, we are delighted to share a guest blog, written by one of our newest friends and supporters Tamara Claunch, who attended the celebration, and who has also agreed to volunteer for DAI. We will be sharing some exciting news about that in another blog very soon!
The Joy of DAI and dementia
By Tamara Claunch, written on Janauary 17, 2019
Yesterday I experienced being jealous of having dementia for the first time. If I had dementia, I would be allowed in the club. Yes, the club is that good.
Dementia Alliance International celebrated their fifth birthday recently.
I, along with other professionals, friends and family was invited to join the online, global celebration. It lasted longer than expected and was very well attended. Over 80 people called in on video from all over the world and the facilitators did a fantastic job of recognizing all attendees and making sure all had a chance to introduce themselves and say a little about DAI.
As I listened to the attendees speak, what struck me was how each member of DAI evidenced a lightness of the spirit, an openness that comes with wisdom and gratitude. Wisdom because they’ve experienced intense trauma and loss.
Gratitude because they’re together.
At least this is my interpretation of the energy in that communal space; I would not presume to know how it feels to be them.
At first, I was reminded of Alcoholics Anonymous: the old timer success stories inspire the freshly baptized-with-fire newcomers. They befriend and teach and support one another. As the group gets bigger, it adjusts – more local support groups, more online support groups, more specific support and study groups.
Absolute inclusion. Like AA, there’s only one criterion for joining: you must have the same “condition” as everyone else in the group.
How must it feel to being newly diagnosed with Alzheimer’s, frontal lobe or Lewy body dementia and given less than five or ten years to live? To believe the majority of those years will be spent dependent upon others?
Imagine then how it might feel to meet dozens of people all over the world who are living beyond dementia. People who are fighting their illness and defying expectations. People who are still independent, social and active a decade or more after diagnosis.
At the birthday party, I saw new DAI members experiencing hope for the future, perhaps for the first time since their diagnosis. As one member put it, “I can fight this and make it [the time] count”.
I saw “old” DAI members reconnecting and seeing each other for the first time in a while.
People laughed and joked, empathized and encouraged. They held a moment of silence for members who are no longer around. All appeared to have a sense of purpose and community and to feel that they are part of something bigger than themselves.
While the members of DAI were uniquely individual, as were their stories, I perceived some common threads running through the tapestry of lively conversation and heartfelt congratulations:
They are all immensely grateful for DAI and the impact that it has had on their lives.
It’s okay to make fun of dementia, onlyif you have it.
Every journey has a purpose.
For a brief time, I was able to experience the humor and humanity and open lightness that exists within these people and between them.
Contrary to how the media, some caregivers and the medical establishment portray dementia, these people are not dumb. They are not dull. They are not incapacitated. They are funny and bright and witty and inclusive.
They are, simply, humans being human. As one member said, “Individually, we have deficits but as a whole we are magnificent.”
As an Integrative Wellness & Life Coach, speaker and writer, I specialize in working with people who have dementia. I am an advocate, a partner and a champion of persons with dementia. But all my passion and all my expertise did not prepare me for what I experienced during DAI’s 5th birthday party.
It ended up being one of the most present, precious experiences of my life.
If only the world could see these people and hear their stories then maybe, just maybe, the world would start to treat them as human beings deserving of dignity, respect, and inclusion.
So while I may not long for a diagnosis of dementia, I would love to belong to an organization like Dementia Alliance International. They have a lot of fun and they do a lot of good for others. They make a real difference in the lives of people all over the world and I am grateful to be a supporter and friend of the group and its members.
Copyright: Tamara Claunch 2019
About Tamara: Tamara Claunch, MEd, is an Integrative Wellness & Life Coach and the Founder of VitaV Wellness in Aging. She has worked extensively in partnership with the Center for Applied Research in Dementia. Her main areas of expertise are dementia risk-reduction and alternative, nonpharmacological interventions for those living with symptoms of dementia and Mild Cognitive Impairment (MCI). She has extensive experience working with individuals, families and the broader medical community to enable independence, dignity and equality in the lives of people living with dementia. Her passion in life is helping others find purpose in their journey, wherever it may take them and whatever it looks like.
Thank you Tamara for this beautful reflection, and thank you Fei Sun for the image below of some of the people who joined us.