“This is a mistake! ― When Receiving a Diagnosis ―”

I am currently 66 years old. In December 2015, at age 56, I was diagnosed with early-onset frontotemporal dementia.
I still vividly remember the shock of receiving that diagnosis. The moment I heard it, I thought, “This is a mistake.” Because my memory still seemed fine, and I was able to talk normally with people. However, I saw my wife and eldest son crying when I returned home and, I wondered if it would be better to die rather than cause trouble for my family. Seeing my parents cry for the first time made me realize how unfilial I was.

Meeting Mr. Katsuji Oshiro

After my diagnosis, I tended to stay at home for about two years, but I was encouraged when I saw the news that Mr. Katsuji Oshiro publicly announced his dementia. Participating in the AAJ and talking with others in similar situations made me feel that I am not alone, and meeting with Mr. Oshiro became a great source of support for me.

Public announcement and Lecture Activities Encouraged by Children 

Before announcing that I have dementia, there were various struggles, including prejudices and the concerns about the impact on my children. However my children encouraged me, saying, “it would be good if people who follow after can see your example”, and as a result I made the announcement in 2018.
At the time I was diagnosed with dementia, I found the day service I was assigned to without being consulted very difficult and unfit for me. Through my experiences, I believe that if welfare workers’ awareness changes, their way of engaging could also change, leading to a transformation in the welfare world. This is why I started sharing my thoughts at lecture events and similar forums.
In 2023, I was appointed as an Okinawa Prefecture Dementia Hope Ambassador and have been involved in dementia awareness activities.

From diagnosis to providing support: transitioning after ten years

Since I surrendered my driver’s license, it has become difficult to go out alone, but I am able to spend my days supported by my family and those around me. I cherish each day by enjoying my hobbies, such as listening to music, playing the guitar, going for drives, and spending time with my grandchildren. Additionally, the monthly personal interaction meetings (Doshikai) are enjoyable, filled with lively conversations, and pass by in the blink of an eye – usually lasting three to four hours.
It has been 10 years since I was diagnosed with dementia. I have been supported by many people so far, and now, together with my wife, I have decided to host “Honnin to Kazoku no Kai” twice a month to offer support ourselves. We hope to serve as a supportive community where individuals with dementia and their families can easily gather, share their concerns, and walk together.

Written by Katsunori Shinzato
Translated by Satoshi Nakano