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.
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.
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 therefore also wish everyone a safe and peaceful New Year, as well as a meaningful and productive year ahead, and really hope you will join us for our 5th Birthday Celebration and Webinar later this month.
The eight founding members who set up DAI, decided the organization should be a global advocacy and support group, of, by and for people with dementia. The original Vision was for “A World where people with dementia are valued.”
DAI’s Vision now is: “A world where people with dementia are valued and included” and we are proud to also be global, well beyond the three countries the original co founders are from.
Although there were and still are many Alzheimer’s organisations, their missions started with support for families and care partners, and the founding members of DAI believed that peer to peer support specifically of, by and for people with dementia was needed. The eight founding members also noticed that too often, people spoke for us and about us, but rarely invited us to speak for ourselves. The first few years that people with dementia spoke at ADI conferences, they usually had to submit abstracts and pay to attend.
It is very likely most of the founding members did not have the goal or vision for the amount or level of global advoacy and activism DAI has become involved in, nor any sense of who we would be collaborating or in relationships and partnerships with, but in five years, we have worked hard, and collaborated to work with many leading organisations including the United Nations and the World Health Organisation.
Yesterday was the last official day of active service as members of the Board of Directors for Phyllis Fehr, Ian Gladstone, and Agnes Houston, and we thank them sincerely for their service. Our incoming 2019 Board of Directors will meet next week for their first official board meeting, and we will more formally introduce you to them board soon. By attending our birthday party or our January Webinar, you will also get to meet them online.
Our official celebration of our 5th Birthday will be held on January 15/16, 2019. DAI Members will be sent the login details separately and everyone else will be receive registration details to attend soon.
Kate Swaffer (Chair/CEO)
Jerry Wylie (Vice Chair)
Eileen Taylor (Secretary)
John Sandblom (Treasurer)
Bill Turner (Image not available)
We wish everyone a safe and restful festive season, and a very happy and productive 2019. Thanks also for your support.
As we reflect on 2018, it is remarkable to think that at the end of this year, Dementia Alliance International (DAI) will be celebrating its fifth birthday.
From those early days of eight (8) founding members with dementia representing three countries, we have come a long way. Most of all, we hope that our members gain strength and are empowered to live with a higher quality of life than they are told to expect, from knowing and meeting others also living with dementia.
For some members, DAI becomes a life long commitment and provider of support. For others it could be seen as a launch pad; one that helps them go back to living more positively with dementia. DAI is very proud of what we started, and what we continue to do, and sometimes in spite of varying difficult challenges and hurdles.
One of our mottos has always been, “onwards and upwards, in spite of the every increasing fog”, and we work to keep our vision, mission and values in sight, so that the hurdles of dementia don’t stop us from our work.
DAI was first set up as an advocacy and support group of, by and for people with dementia, to give us an authentic voice, and with the vision of “A world where people with dementia are valued and included.”.
That is the uniqueness of DAI, as we do not have organisations or people without dementia telling us what to say or what to do. We are an autonomous group, with an autonomous voice, and although it can be difficult some days even to get dressed, together we are stronger. We can and we do achieve a lot, often with the direct support of each other, and by using a lot of low and high tech disability support.
In 2018, we have had a lot of new members join DAI, and there has been much activity locally, regionally, national and globally by members. We work collaboratively with national Alzheimer’s organisations as well as the emerging number of National and Regional Dementia Working Groups as requested.
DAI is very proud to have recently partnered with Dementia Australia (DA), which you can read more about in our Media Release. They are the first national advocacy organisation in the world to have formally partnered with us. DAI is also pleased to have re partnered with Alzheimer’s Disease International, and are delighted the Taiwan Alzheimer’s Disease Association (TADA) have also given DAI a generous donation.
In 2019, we look forward to publishing our 2018 Annual Report, which will be full of the news about our many activities around the world, a number of reports, and the successes and goals we have reached this year. It will include the details of our recent Annual General Meeting.
We congratulate Dr Jennifer Bute on the recent release of her first book,Dementia from the Inside: A doctor’s personal journey of hope, available now. Wendy Mitchells book, first published in the UK earlier this year Somebody I Used to Know continues to inspire, and has now also been published into Japanese and Spanish. Congratulations Wendy. Many others with dementia have published books about their own experiences of dementia, and many of these authors, and others living with dementia continue to write regular blogs.
DAI also congratulates Sarah Yeates, our long time and very loyal volunter, who works full time for Caladenia Dementia Care. Sarah has just been made their Chief Executive Officer, a very well deserved recognition of her ongoing committment and excellence.
Peter Berry and Lorayne Burgess from the UK (possibly other DAI members too) have been involved in a BBC documentary, based on proving to the world people with dementia are still employable. We congratulate them on this; as they have strenghened friendships, they have also helped changed attitudes about dementia. We also congratulate Mrs Helen Rochford-Brennan on her appointment as the new Chair of the European Working Group of people With Dementia, and onreceiving her Honorary Doctorate from the NUI Galway.
DAI continues to make submissions to governments on our rights, on dementia plans, on access to the CRPD, and on other matters, as they come up. The LEAD Coalition also makes reggular submissions, which DAI regularly co-signs to help strengthen their voice for change in the USA. The Older Persons Convention is still under review, and we are also working towards ensuring it is aligned to the CRPD, and in which we hope the final draft will reflect this as well as highlight dementia in its own right, as it deserves.
We are very proud to be Founding Members of the newly established Global Rehabilitation Alliance, which was launched in Geneva at the World Health Assembly this year. DAI is now also a formal member of the The Global Alliance for the Rights of Older People, who works with agencies seeking to promote and strengthen the rights of older people.
The emergence of Dementia Working or Advisory Groups or Committees continues to strengthen; this is a list of the known Groups/Committees:
2000: Dementia Advocacy Support Network International (DASNI)
2002: Scottish Dementia Working Group (SDWG)
2006: Alzheimer’s America Early-Stage Advisory Group (EAG)
2012: Highlands Dementia Working Group (HDWG)
2012: European People with Dementia Working Group (EUPDWG)
2013: Dementia Australia Dementia Advisory Committee (DADAC)
2013: Irish Dementia Working Group (IDWG)
2014: Dementia Alliance International (DAI)
2014: Japan Dementia Working Group (JDWG)
2014: Southern (Kiama) Dementia Advisory Group (DAG’s)
2014: NZ Dementia Advisory Committee (NZDAC)
2015: Ontario Dementia Advisory Group (ODAG)
2016: Dementia Advocacy Awareness Team (DAAT)
2017: 3 Nations Dementia Working Group (3NDWG)
It is also important to note countries including Taiwan and Singapore are working towards launching their own DWG’s in 2019, and there is a continuing emergence of self-advocates in countries like this primarily due to the work of DAI and also ADI members, now determined to empower and enable the inclusion of people with dementia in their own countries.
Finally, we thank everyone who has sponsored us, or donated to us, as without your generosity, we could not continue to provide the current and new services we provide to our members.
There are only 15 days left to make Christmas REALLY COUNT, through the PayPal fee-free + 1% Christmas Donation deal.
Yesterday was Universal Health Care Day. This years’s theme is ‘Unite for Universal Health Coverage: Now is the Time for Collective Action’, emphasises the critical importance of strong health systems to reduce poverty, promote economic growth and achieve the 2030 Sustainable Development Goals.
It also seemed appropriate today to post this very short video from the World Health Organisation as a reminder that access to health for all is a basic human right.
The NCD Alliance also published their updated policy brief, “on the mutually reinforcing agenda of Universal Health Coverage and NCDs, to mark UHC Day 2018. The brief on reflects the developments in both the NCD response and UHC agenda since the adoption of the 2030 Agenda for Sustainable Development and the SDGs. It makes the case for including NCDs in national UHC benefit packages in order to fully achieve the Sustainable Development Goal target of healthy lives and well-being for all at all ages. 2018 is the first year that UHC Day has been formally recognised by the United Nations, and comes 10 months before the UN High-Level Meeting on Universal Health Coverage, scheduled for the 2019 General Assembly, on 23 September.”
PayPal is once again offering charities a ‘fee-free’ special Christmas period, from November 27 through to December 31st (US time), by covering the fees of all donations through PayPal using the link provided below. On top of that, the Giving Fund will add 1% to the donation.
Dementia Alliance International relies on the generosity of indovidual donors and corporate partners, and also recieves fees through the generosity of some of its members who provides offered services, for which the fee goes to DAI.
It also now defines dementia is a condition causing acquired cognitive disabilities.
It is therefore important as an organisation, DAI acknowledges and celebrates this day, as our members, when first diagnosed (even if not visible in the earlier stages of dementia) are living with acquired cognitive disabilities. However, as dementia progresses, our disabilities are likely to become more obvious, athough this seems to be the lens through which dementia is still only being viewed by health care professionals (in spite of initiatives to diagnose earlier) and many in the community (i.e. late stage).
Seeing dementia through the lens of disability helps us to claim our rights, under the Convention on the Rights of Persons with Disabilities (CRPD).
If you go to the United Nations website, you can read more about the theme of their activiteis today. What is very relevant to people with dementia is they are focusing in the morning on Sustainable Development Goals, and in the afternoon on Accessible Cities for All: Smart and Inclusive Urban Planning.
This is relevant, in light of the global campaigns to make our communities ‘dementia friendly’, as what we want has little to do with being friendly, and everything to do with inclusion, and therefore access, including access to adequate health care, and disability support including rehabilitation (cognitive and physical).
On the second half of the page about today on the UN, it says:
The opening ceremony will review the progress achieved, explore ways to further empower persons with disabilities and provide an overview of the international framework of the implementation of the 2030 Agenda for SDGs, in line with the Convention on the Rights of Persons with Disabilities (CRPD). The event will gather Member States, UN entities, civil society organizations, academic institutes and persons with disabilities.
In the afternoon, the commemoration will focus on “Accessible Cities for All: Smart and Inclusive Urban Planning” as key elements to reduce inequalities and empower people to live in accessible, usable and friendly healthy environments. The event will explore SDG11 of the 2030 Agenda for sustainable development by providing space for Mayors, City Leaders to exchange innovative solutions on how to implement the SDGs and to exchange good practices about inclusive urban planning to promote the participation and well-being of their citizens of all ages and abilities.
Afterwards, the event will discuss smart inclusive environment and how to apply information and communication technologies to provide better infrastructure, quality services in a safe accessible environment.”
People with dementia have definitely become empowered, and are working together locally, nationally and globally to ensure dementia is ot only listed on websites as a condition casuing disabikites, it si a condition where we wil, at the time of diagnosis, be provided with adequate disability assessment and support to maintain independence for as long as possible, not just assessment of our Actvities of Daily Living (ADL’s), and which will also include rehabilitation.