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
About the Webinar:
Some people say that stopping driving is the “hardest thing” they face in living with dementia. Our research has explored people’s experiences related to stopping driving, the involvement of health professionals and key times when support is needed. The talk will draw on this to cover ways to prepare, decide and adjust emotionally and practically to life without driving. It will highlight ways to stay engaged in the community and in meaningful activities. It will also show advice for health professionals and family members for ways they can assist people who are retiring from driving. The CarFreeMe program is an example of an education and support program helping people with stopping driving, and we will give an overview of this and ways people could get involved.
About our speakers: Jacki: Dr Jacki Liddle is an Occupational Therapist and Research Fellow. She is involved in researching life transitions, ways of supporting community engagement and ways of measuring meaningful outcomes. Her research with people living with dementia includes codesigning technology and supporting community mobility, particularly after driving cessation.
Theresa: Dr Theresa Scott is an NHMRC-ARC Dementia Research Development Fellow and a Psychologist at The University of Queensland. Her fellowship research is focused on the complex issues around dementia and driving. She is particularly interested in how driving cessation might be better managed in primary care settings and in supporting people living with dementia who are transitioning to retirement from driving
Tuesday, April 23, 2019 (USA/CA/UK/EU):
11:00 am Honolulu
2:00 pm Oregon Portland/San Francisco USA/Vancouver CA
4:00 pm Des Moines/Chicago USA
5:00 pm New York USA/Toronto CA
10:00 pm London/Glasgow/Dublin UK
11:00 pm Paris, Munich, Amsterdam, EU
Wednesday, April 24, 2019 (AU/NZ/JP/SGP/TWN/CHN):
6:30 am Adelaide AU
7:00 am Brisbane/Sydney/Melbourne/Canberra/Tasmania AU
5:00 am Perth AU/Taipei TWN/Beijing
6:00 am Tokyo, JP
9:00 am Auckland, NZ
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…
This video is of DAI member, Graeme Atkins from Australia, who wrote and performed this song especially for our 5th birthday this year. Very special thanks to Graeme, and also to his wife who supports him to live so positvely with dementia.
We are posting it here today, to get us in the moodfor our World Rocks Against Dementia online event, being held on March 22/23, 2019. Register here now, if you haven’t already done so!
The Non Communicable Diseases Alliance (NCDA) has prepared a survey to understand the community’s priorities when it comes to universal health coverage (UHC).
This is in advance of the first United Nations High-Level Meeting (HLM) on UHC, which will be held in New Yorkon 23 September 2019.
Dementia was not even mentioned at the HLM in September 2018, so it is becoming imperative for people with dementia to have their say.
Please therefore consider completing the survey. People with dementia are as entitled to Universal Health Coverage as everyone else!
The results of this consultation will feed into broader advocacy efforts being conducted byUHC2030and thecivil society engagement mechanism, which are leading advocacy for the HLM on UHC. NCDA’s approach is to highlight specific areas in which the NCD community can bring added value to the discussion ahead of the HLM on UHC.
We hope by specifically inviting people with dementia to participate in this survey, the NCDA will ensure dementia is mentioned in its own right, and becomes a priority too.
Please completethis online surveybyFriday 29 March. You maypreview the survey, to facilitate consultation and help formulate their responses. The survey will take about 15 minutes to complete, once you have developed your responses.
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.