Diagnosed with young-onset dementia amid feelings of defeat while caring for my parents

Starting around June 2021, I used the knowledge I gained from working in caregiving to care for my parents, but within less than six months, I found it difficult to continue providing home assistance. I was unable to adequately accept the rapid progression of my parents’ dementia, and I couldn’t utilize the knowledge I gained from my caregiving experience at all. The only feeling that remains strongly is a sense of defeat. I was diagnosed with young-onset dementia by my primary care doctor while managing caregiving responsibilities and undergoing my own treatment. I experienced the situation of caring for my parents in the form of their dementia onset, and came to realize that I will also eventually become like that. I thought, ‘I don’t want other relatives to bear the same burdens of caregiving’, and ‘No one listens to my feelings. Even if I talk about it, nothing will change’, so I hesitated for about a year.

Introducing a young-onset dementia coordinator

After attempting to re-employ myself in preparation for economic hardship but being unable to do so, I was informed by the local government that there would be a gathering for the individual and their family, and I was introduced to the coordinator, Ms. Yumiko Mastumoto. Attending “Link Care”, a gathering for the individuals involved and their families, provided me with an opportunity to interact with others, to rebuild my negative mindset, and to begin exploring the possibility of re-engaging with society, which once seemed hopeless.
As the person in charge and caregiver, together with engaging in lectures and orange ambassador activities
Currently, I am attending a supported employment service center while also participating as a caregiver for the individual. Alongside that, I join various gatherings, and I have been given opportunities to speak at university events about my experiences and thoughts. Since then, I have been giving lectures to share and promote my perspectives as a person with lived experience. I received the appointment as Saitama Prefecture Orange Ambassador from the Governor of Saitama Prefecture in September 2024.

Despite Uncertainty, I enjoy ‘trial’ – valuing insights and connections

I am continuing to attempt, albeit uncertainly, to find ways to delay the progression of the disease within the limited time remaining.
I am confused by even the uncertain things, but I also look forward to trying. Dementia is just one of many illnesses, and I believe there’s no need to give up on the things you want to do. I was fortunate to meet various friends and gain diverse insights and new perspectives. And I hope that you will cherish and make use of the insights you have gained through your experiences and the connections you have with your peers.

Written by Osamu Harada
Translated by Satoshi Nakano