The huge misunderstanding is that the person with dementia has no understanding, by Naomi chi口

The huge misunderstanding is that the person with dementia has no understanding.

内奥米 chi口

Discussion about the end of life medical approach and the care.

主题: Who should make decisions at the final stage of life and how?

From the perspective of the person living with Lewy body dementia.”  yomi Dr. Yomiuri Shimbun Holdings, 15.12.2016. Available in Japanese here 这里。

DAI is delighted to share this article about dementia and end of life issues, from the perspectives of Naomi chi口, 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, “嗨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 wont 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 路易体病。 

A care method called “人性” 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 Alzheimers 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.”

Picture: A lady who was cared for by the staff in Aoi Care until she passed away. She enjoyed the role of selling snacks in a community event.

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.

Picture: An example of gastrostomy

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 persons 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 users 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.

 

Picture: A staff member of Aoi Care and Kin who passed away just after realizing her dream of visiting her hometown in Akita, Japan

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.”

传: chi口 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. 

chi口 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 网站 of a major newspaper company.   As of 2016年十月, 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.

Naomi chi口 Copyright 2019 

 

NEWSFLASH: Dr Laura Booi presents at our next Webinar

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!

“The World Young Leaders in Dementia: Collaboration Across Disciplines and Countries Among the Next Generation of Dementia Leaders”

Presented by Laura Booi PhD

 

 

 

 

 

 

  • Wednesday, Febuary 27, 2019 (USA/CA/UK/EU)
  • Thursday, Febuary 27, 2019 (AU/NZ/JP/SGP/TWN)

请注意: this will be one event, set in a number of different time zones.

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关于网络研讨会: 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.

关于劳拉: 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):

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Thursday, February 28, 2019 (AU/NZ/JP/SGP/ASIA):

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The Webinar runs for up to 1.5 hours. 

Check your time here if not listed above.

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  • Employed people: $50:00 USD
  • Full time Students: $25:00 USD

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Reminder from the late Susan Suchan

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.

Alzheimer’s from the Inside Out, by Dr Richard Taylor

本来是 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.

他的 speech notes are on the original DAI blog published after the conference