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Dementia Through the Eyes of a Doctor With Dementia

Thanks to DAI member Rose Ong from Canada for this blog about what it was like as a medical doctor, for Dr Kazuo Hasegawa to be diagnosed himself, with dementia.

A Look at Dementia Through the Eyes of a Doctor With Dementia

Photo source: AAJ, Dr Kazuo Hasegawa presenting at the ADI 2017 conference in Kyoto

Dr. Kazuo Hasegawa was 90 years old when interviewed on Japan’s NHK Documentary television channel in February 2020. He has been a psychiatrist for most of his life, specializing in dementias.

In 1974-75, he was instrumental in developing Japan’s version of the now well known Mini Mental Symptoms Exam or MMSE, primarily developed for psychiatric patients, but later used to assess the level of Mild Cognitive Impairment by physicians around the world.

Dr Hasegawa was also on the ADI Conference Scientific Programme Committee in 2017, when they co-hosted their conference with Alzheimer’s Japan. This video was his message to AAJ members for their annual conference in 2021. He said, “Live your own life with positive intent and build a future.

But it was in his 50’s that his focus changed from psychiatry to dementia specifically when a patient and friend of his touched his heart; in his words,

“..I had one patient I’ll never forget. That person had some music paper for writing notations. (On it) he wrote the following message:

         ‘Where has the excitement of my life gone?’

It was a very sad cry from the heart. I’ve always kept that deep in my mind. That day, I pledged to devote my career to doing research, providing care, whatever (was needed), to deal with dementia.”

Dr. Hasegawa’s patient was 50 years old when diagnosed with Young Onset Dementia. His wife shared with NHK another script he wrote on notation paper:

I have no melodies in me, no harmonies, no resonance; I want my heart back. The source of all my feelings. Please come back again. That beautiful throb of excitement may never be mine again.”

Little did Dr. Hasegawa realize that after years of study, decades of speaking at conferences, he would become one of the patients he was determined to help.

He was later diagnosed with a rare and very slow developing dementia, Argyrophilic Grain Disease, defined as:  (AGD)is a sporadic, very late-onset tauopathy, accounting for approximately 4–13% of neurodegenerative dementias. AGD may manifest with a range of symptoms such as cognitive decline and behavioral abnormalities.

He did continue to do research on his good days. Because he was one of Japan’s leading Dementia Authorities, his family would assist his transportation to conferences where he continued to speak as a valued member of the medical community, well into his own diagnosis.

Dr. Hasegawa, like all of us, was gripped by anxiety when he was diagnosed with AGD, because of the scores of people he had treated over the years.

“I thought, ‘I’m finished. I’m hopeless. Will I become incapable of doing anything?’ I felt more and more alone.

Now that I have dementia, I realize, I have to stop trying to ease my patients’ fear with shallow platitudes. I never thought it would be so hard.”

The Wall Street Journal stated that Dr. Hasegawa had imagined the minds of dementia patients were in a permanent state of fogginess, but as a patient, he experienced swings in his mental fitness.

In the morning, his brain was “shining and normal”.

But by early afternoon his memory was fading, and by dinner time, “I became like a real dementia patient.” He advised his caregivers to attend to his needs in the morning while he was lucid and more alert.

He started to keep a journal of all the things he was forgetting. It was as if he needed to double check everything all the time. He realized with certainty that he was deteriorating.

The idea of living life with certainty; that certainty is part of life, has declined.”

Always promoting and advocating for daycare programs, he was very lonely when he participated in them himself. He was quiet and never smiled, overcome with the grief of missing his wife and daughter. Eventually, he stopped attending.

When asked “What is dementia?” he said,

The superfluous things are scrapped away when you have dementia. It works very efficiently. There’s cause for concern, but you don’t notice it. This is one salvation God has prepared for us all.”

When asked how his ‘landscape of life’ has changed, he replied,

“It hasn’t changed. It’s normal. It’s the same landscape as before. When the sun goes down, when you can see Mt. Fuji – it’s normal. The people I meet look the same. There is no change.”

Even with dementia, the physical landscape doesn’t change. It’s only the person with dementia that changes.

However, most of the negative changes that impact the person with dementia, are related to the way others view and treat that person, and to the disabling environments most societies expect them to live in.

Dr Hasegawa passed away peacefully in his sleep aged 92.

https://www.wsj.com/articles/authority-on-dementia-found-new-insight-as-patient-11637938800

https://www3.nhk.or.jp/nhkworld/en/ondemand/video/4001348/