Struggles Following My Diagnosis

In 2009, I visited a memory clinic rather casually. After undergoing some tests, I was diagnosed with mixed dementia involving frontotemporal dementia and Alzheimer’s disease. When the doctor explained the diagnosis, however, he directed his attention almost entirely toward my family. I felt a deep sense of emptiness, as if he were saying, “There’s no point explaining this to someone with dementia―they won’t understand anyway.”
Whenever I tried to express my frustration and confusion to the doctor, the side effects of anti-dementia medication were treated with antipsychotic drugs―a kind of “prescribing one drug to counter the effects of another.” When I told him how much I was suffering, he simply asked, “Would you like to consult a psychiatrist?” That comment led me to seek a second opinion. The new doctor carefully considered how I was functioning in my daily life and diagnosed me with MCI (Mild Cognitive Impairment).

Discovering the Alzheimer’s Association of Japan

Perhaps because of the irritability associated with frontotemporal dementia, my wife and I often argued over trivial matters. The stress became overwhelming for her, and she sought help at a local community comprehensive support center. It was there that she first learned about the Alzheimer’s Association of Japan. When I attended one of its meetings, I met people who were in situations similar to mine. I also met a supporter who treated me with respect and valued my pride and dignity. I decided to join the organization right away.
At the meetings, people living with dementia and their family members gathered in separate rooms to talk. My wife was apparently introduced to the concept of person-centered care by a former branch representative. After that, she began to listen to my opinions without immediately rejecting them. As a result of this change in how she related to me, I too became calmer and more at peace.

Embracing a New Understanding of Dementia

In June 2025, I was appointed as a Dementia Hope Ambassador upon the recommendation of the Mie Prefecture branch. Since then, I have shared my personal experiences and taken part in peer-support activities in various places. When I read the feedback and evaluations from participants after my talks, I feel a strong sense of purpose and fulfillment.
With support from my son―including help arranging train tickets and using GPS to keep track of my journey―I have also traveled alone on the Shinkansen and enjoyed a walk around the Imperial Palace Outer Gardens.
We are still often held back by prejudice rooted in outdated views of dementia. That is why I believe it is important for us to embrace a new understanding of dementia ourselves. Through connecting with others who share similar experiences, we can find hope in our own way and continue to live happily and authentically. 

Written By Katsuo Takai
Translated BY Satoshi Nakano