Options available to mitigate dangers of living alone with dementia

This is the second of a five-part series on population woes caused by Japan’s graying society and low birthrate.

At first glance, it’s hard to tell what’s wrong with Keiko Sawada.

“I don’t hate being alone, but I do feel lonely at times,” Sawada, a sociable and talkative woman, said during a recent visit to her one-room apartment in Nakano Ward, Tokyo. “Of course I’m worried about what will happen to me in the future. I’m 85, after all.”

As casual exchanges continue, however, it becomes increasingly clear the former bar hostess has serious memory problems.

She keeps referring to her age as 85, even though she is 78. She keeps asking about a male friend who used to drop by, unable to accept that he died last year. Her monthly mobile phone bills ran up to ¥20,000 recently, but she doesn’t know why. She misses appointments with her doctor by showing up on the wrong day, and often takes more sleeping pills than prescribed because she can’t remember when she took them last.

Sawada, who lives alone, has dementia. In this rapidly aging country, the number of dementia patients living alone, either by choice or due to a lack of options, is expected to rise.

While the health ministry has no data on how many of the nation’s 4.62 million dementia patients live alone, or future projections for such people, their number is bound to surge, given that the general ratio of single-person households is on the rise and the number of patients is expected to top 7 million in 2025.

Experts say Japan should come up with a way to better deal with these people because they have a unique set of health risks. As they have problems with short-term memory, they might keep water running or cause a fire by forgetting to turn off the stove when cooking. Some lose their sense of smell and awareness of temperature, which means they risk eating rotten food or keeping the air conditioner off in sweltering summers or freezing winters.

Sawada’s quality of life improved significantly after she started receiving health services under the nursing insurance program about a year ago. The nationwide program allows needy seniors, including those with dementia, to access a range of state-subsidized services according to level of impediment.

Before that, she hadn’t bathed for months, and at one time had her electricity cut off because she had failed to pay the bills, according to her younger brother, who now comes to see her once a week, and a care manager dispatched by Nakano Ward’s long-term care center for the elderly.

Sawada, who is on welfare, now receives weekly visits from a domestic helper who cleans her room and a pharmacist who puts her medicine tablets in a calendar-like organizer hung on the wall so she won’t misplace or overdose on them. Sawada also has weekly trips to a nearby day care facility arranged so she can take a bath once a week.

So while Sawada lives by herself, she is technically not alone. Others are not as lucky.

“Dementia patients who live alone but come to our hospital regularly are relatively OK,” said Dr. Yuichi Sugai, a psychiatrist and dementia specialist at Yokufukai Hospital in Tokyo’s Suginami Ward. “The bigger problem is, there are a sizable number of suspected cases whose problems are harder to grasp, like those who are not cared for by anybody and refuse visits from public health officials. Some of them end up having kodokushi (solitary deaths) at home. Their cases come to light only after their deaths.”

Sugai said that to care for the swelling ranks of solitary dementia patients, it is important for every municipality to have an “early response team” of specialists to seek out high-risk people and determine what kind of help they need, especially in cities, where community ties are weak and people often don’t know who lives next door.

Securing enough caregivers is also key, he added, noting the government should have a detailed plan in place so the nation can maintain their quality and quantity.

“The government has plans for securing enough doctors and nurses in the future,” Sugai said. “What about caregivers? We have seen many vocational schools for caregivers shut down recently because student enrollment fell far short of the target.”

Meanwhile, Masahiko Sato, who has dementia, says policymakers should incorporate the voices of dementia patients further.

Sato is a living example of how people with dementia can live actively and independently — with help and understanding from others.

Sato, 61, who was diagnosed with early onset Alzheimer’s in 2005, has made full use of digital tools to make up for his memory lapses. Creative use of such tools allowed the Gifu Prefecture native to live on his own for 10 years before moving to a care facility in June 2015, he said.

Sato, who lives in Kawaguchi, Saitama Prefecture, has made it a habit to turn his computer on and check his Google calendar when he gets up every morning. While dementia patients are known to lose track of time, the calendar shows which day of the month it is, a convenient feature not available in a handwritten organizer.

Before he goes out, he sets several timers on his mobile phone around the scheduled appointment. Using a train timetable and route finder software, he makes sure he gets an alert on his phone while on the train so he won’t forget where to get off.

Sato published a book in 2014 on his experiences as a dementia patient: “Ninchisho ni natta watashi ga tsutaetaikoto” (“The Message I, as a Dementia Sufferer, Want to Tell”). The book, which won an award last year from the Medical Journalist Association of Japan, is most likely the first book in Japan written entirely by someone with dementia, according to the book’s publisher, Otsuki Shoten.

Though Sato used to work as a systems engineer for a computer company before his diagnosis, he said he started using social media and an iPad only years after he was diagnosed with Alzheimer’s. He recommends that other patients start using such tools in the early stages of their illness.

Sato, who now has more than 1,300 friends on Facebook, makes frequent public speeches around the country, spreading the message that life with dementia comes with many inconveniences, but not necessarily unhappiness.

For people with dementia to live a fulfilling life, however, the widespread prejudice that they are helpless and powerless, and that they can only be burdens to society, needs to be eradicated, he said.

“I want to participate in society,” he said emphatically during a recent interview. “In the future, I would like to organize a group of volunteers who clean the park and around the stations in the Kawaguchi area.”

Sato acknowledges that his health condition fluctuates and sometimes deteriorates to a point he has to cancel an important appointment at the last minute. Still, he keeps a positive outlook on life, and that seems to have made a big difference in slowing the progress of his Alzheimer’s.

“When you get dementia, it’s not the end of the world,” he said. “Be grateful for whatever abilities you still have — and go on believing that you have a wonderful life to lead.”