Five people living with dementia share their views with 183 participants

Questions submitted in advance were answered by people living with dementia: Masaaki Hirai (Board Member), Shigeo Miura (Shizuoka), Katsuo Takai(Mie) and Hideo Miwa(Tottori). The session was moderated by Tomofumi Tanno(Vice Representative Director), who also lives with dementia.
The seminar was warm and friendly, with candid conversations and plenty of laughter.

What strategies do you use in everyday life?

●To avoid getting lost, I prepare in advance by writing down the address of my destination and looking at a map so that I can form a mental picture of where I am going. However, I sometimes panic when I arrive and find that things look different from
what I had imagined—for example, because of construction work.
●I keep my medication routine simple by taking my medicine only in the morning and before going to bed. After taking it, I move the medicine packet to a different place so that I know I have already taken it.
●Smartphones are extremely useful. I use mine for managing my schedule, finding my way to places, and entertaining myself.

How did your feelings change when you first noticed something was different and after you received a diagnosis?

●At first, I was shocked and thought, “Surely this can’t be happening to me.” But once it had happened, I realized I had to accept it.
●I realized that I myself had held prejudices about dementia. In a sense, it was also a struggle against my own prejudice.
●The years before I finally received a diagnosis were a very difficult time. Once I was diagnosed, I felt released from that suffering.

How do you cope with the progression of dementia?

●My sense of balance is poor, and I sometimes feel unsteady when I stand up. I exercise and train so that I can maintain control of my own body without having to rely on others for help.
●I am the person who understands my symptoms best. I think changes in emotions and behavior can occur—for example, becoming angry when someone points something out or making up stories.
●Thinking about the progression of dementia also means building a circle of people around you, including your family. From an early stage, it is important to tell those around you how you want to live. Creating that circle of support is another way of helping yourself continue to live well, as yourself, right to the end of your life.

Relationships with family, people around us, and the community

●It would be good if we could build relationships in which people see and treat us not as “people with dementia,” but simply as individuals.
●Please don’t always step in ahead of us just to prevent us from making mistakes. We can make a mistake, learn from it, find a better way, succeed, and regain our confidence.
●What makes a place feel comfortable differs from person to person. This is not limited to people with dementia. Anyone might walk into a café and think, “This feels nice,” or “Something doesn’t feel quite right here.”
●For the sake of our families as well, I hope we can create an environment in which people living with dementia have the freedom to live their lives and do not have to give up on what matters to them.

Translated BY Satoshi Nakano