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 "What I want most to tell people is, 'Don't underestimate your
abilities. There are things you cannot do but there are lots of
things you can do, so do not despair," Sato told Reuters in an
interview at a park outside Tokyo, where he and his supporters
gathered for traditional cherry blossom viewing.
"The most painful thing is when someone says 'I am pitiable'. I am
not pitiable. There are inconveniences, but I am not unhappy," said
Sato, a former systems engineer who has lectured around Japan and
written a book with the same message.
Encouraging people with dementia to speak out is part of Japan's
effort to ease the negative image of a disorder that affects nearly
5 million citizens and is forecast to affect 7 million, or one in
five Japanese age 65 or over, by 2025.
Japan is a global frontrunner in confronting dementia, the cost of
which has been put at 1 percent of world GDP.
"Whether people with dementia can 'come out' depends on the values
and culture of the community," said Kumiko Nagata, research director
at the Dementia Care Research and Training Centre, Tokyo, adding
that attitudes were changing.
To be sure, people with dementia like Sato, a bachelor who managed
to live alone until last year by using his phone and now an iPad to
make up for memory loss, are a minority.
Many live with relatives who struggle to juggle care with jobs. Some
100,000 workers quit each year to care for elderly relatives, a
figure Prime Minister Shinzo Abe aims to cut to zero by 2025, when
all Japan's babyboomers will be 75 or older.
Families providing care accounted for nearly half of the estimated
14.5 trillion yen ($133 billion) in social cost of dementia in Japan
in 2014.
Kanemasa Ito is one such care-giver. Ito had to shut the two
convenience stores he and his wife, Kimiko, ran together when she
was diagnosed with dementia 11 years ago at the age of 57.
"I had planned to work until I was 85," Ito told Reuters, sitting
with Kumiko at their home in Kawasaki, south of Tokyo.
"I thought, will the rest of my life just be caring for my wife?"
added Ito, 72, who later became a home helper himself and now
entrusts his wife to a day-care center several times a week.
'INCREASE UNDERSTANDING'
To keep Kimiko from wandering off, he installed a special bolt on
the front door and makes sure she wears a GPS tracking necklace when
they go out in case she slips away.
Nearly 11,000 people with dementia were reported missing, most
temporarily, in 2014. Others are abused or even killed by relatives.
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Policy-makers and experts hope the positive message will help
achieve a goal of dementia-friendly communities where elderly can
stay at home or in small group homes rather than in large, costly
institutions that can aggravate their condition.
"There has been a tendency to view dementia as a disease of which to
be ashamed," Tadayuki Mizutani, head of the health ministry's
dementia policy promotion office, told Reuters.
"We have been campaigning to increase understanding of dementia.
What is new is to have people with dementia speak out in their own
words."
That was an element in government proposals unveiled last year for
improved dementia care that include a stress on early detection,
more doctors and primary care-givers to look after those with
dementia, "SOS networks" of police, residents and businesses to find
missing people and volunteer "Dementia Supporters" trained to help
people in the community.
The government has budgeted 22.5 billion yen for the plan in the
year from April 2016, up from 16.1 billion last year.
Experts give Japan high marks for its community-oriented programs as
well as its efforts to destigmatise the disease.
"The focus in Japan is on care - what do you do for people with
dementia living in the community?" said John Campbell, a University
of Michigan professor emeritus.
Still, some worry that reforms of Japan's Long-term Care Insurance
system, under fiscal pressure in a country with huge public debt,
are boosting families' burdens by making it harder for those with
lighter disabilities to access services.
For Kanemasa Ito, any cutbacks could threaten his dream of caring
for Kumiko at home.
"I want to live with her at home as long as possible," he said,
gently touching her wrist.
(Reporting by Linda Sieg; Editing by Robert Birsel)
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