As Glaswegian James McKillop strode towards Arrivals in Tokyo airport last November, he read the customs sign. Had he anything to declare? Yes – he had a positive message of hope and the strong belief in the right to live well for almost 5 million people with dementia in Japan.
James – his journey
Now 75, James was diagnosed with dementia at 59. After recovering from the shock and encouraged by staff from Alzheimer Scotland, he realised that he could still lead a fulfilling life. The challenge facing him was to find his voice to express his determination to do so.
Soon, James was talking about his experiences candidly in venues ranging from care homes to conferences. He became a key founder member of the groundbreaking Scottish Dementia Working Group in 2002. The Group, led by people with dementia, works towards making life better for people living with dementia.
James’ journey to Japan started when he met the NHK TV Director Yuji Kawamura in Glasgow. Yuji’s follow-up programme ‘Nothing About Us, Without Us!’ on the Scottish Dementia Working Group had a big impact, as the first Japan Dementia Working Group was formed the following month.
Now James, accompanied and supported by his loyal wife Maureen, was in Japan with his message of hope. He had been invited to appear at two ‘Heart Forums’ in Tokyo and Osaka. The theme on both occasions was ‘A new dawn – people living with dementia mapping out their destiny’. The message from James: to exchange learning and share lived experiences.
Two cultures, one experience
James was soon sharing his personal journey of 15 years living with dementia. Speaking directly, James admitted his initial shock on receiving the diagnosis and the dark days that followed and spoke about the possible roles and opportunities for people living with dementia within their community and in society at large. His audiences in Tokyo and Osaka were deeply moved.
Two founding members of the Japan Dementia Working Group also spoke. First, Tomofumi Tanno, a 41-year-old with a two year old diagnosis of Alzheimer’s disease, provided an almost mirror image of the experiences of James’ own journey. Next, Kazuko Fujita, 54, living with dementia for the past 8 years, said that her initial experiences had been similar. For James, Tomofumi and Kazuko, the months following a diagnosis of dementia were blank and bleak with no support. Such a diagnosis can have a huge impact on people with dementia and families, particularly when the community all around lacks awareness and understanding.
Breaking the silence
Someone in the audience asked, “How did you break through the period of despair and isolation?” Tomofumi said that meeting other people living with dementia gave him hope and purpose, and above all encouraging smiles.
Another person asked how to lead a fulfilling life with dementia. Tomofumi answered: “Once out of the blank period and hopeful of a fulfilling life, it is vital to speak up and speak out. As dementia is not a visible condition, those who live with it have to make their needs known.” James added that his “Helpcard” he carries has been very useful, which states that he is living with dementia and what his needs might be.
Tomofumi created the ‘Orange Door’ in his hometown of Sendai to provide a welcoming meeting place by and for those living with dementia, offering a listening ear, guidance and a sense of hope. Kazuko launched a local support group ‘Clover’ in her region Totorri, working for and with people with early-onset dementia. James co-founded the Scottish Dementia Working Group. Their actions remind us that people with dementia are agents for change and improvement. By cashing in on their lived experience, they are leading the way towards a better life for their peers and a more dementia friendly society by influencing policy.
Dementia – we are all in it together
Kumiko Nagata, a panelist, said that dementia is everybody’s business now. In Japan, 1 in 5 will have had direct experience of dementia by 2025. She emphasised the need for meeting people with dementia, if only to hear their voices and aspirations.
James asked his audiences:
- If your mother developed dementia, how would you like her to be treated by society?
- If you yourself develop dementia at some time in the future, how would you like to be treated by society?
Looking to the future
To James’ astonishment he found that his Japanese peers shared the same experiences, mirroring his frustrations, fears and hopes to create a dementia friendly world, a better life ahead for the current 46 million people living with dementia worldwide – and for the many millions to follow.
By Dr Mayumi Hayashi from King’s College London and James McKillop, who is living with dementia
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