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Peers, support programs assist patients with early stage dementia

Yasuhira Watanabe, center right, and his wife Masako, right, are consulted by patients with dementia, at Orange Cafe at Nishikagawa Hospital in the Kagawa Prefecture city of Mitoyo, on Aug. 24, 2018. (Mainichi/Yuki Noguchi)

Post-diagnostic support is attracting attention as a measure to prevent the social withdrawal of people found to be in the early stages of dementia.

Sept. 21 marked World Alzheimer's Day, which aims to spread knowledge on the ailment that is the foremost cause of dementia. Although improvements in medicine now enable early detection, some patients isolate themselves in their homes out of shock.

"It's OK to express your feelings when you can," part-time counselor Yasuhira Watanabe, 76, said to people at Orange Cafe in the Kagawa Prefecture city of Mitoyo. The cafe, managed by the city-run Nishikagawa Hospital, serves as a gathering place for patients with dementia and their family members. Watanabe himself has been diagnosed with vascular dementia, caused by brain damage due to problems with blood flow to the brain.

Kayoko Fujime, 68, who has Alzheimer's, dropped by the cafe with her husband Fujio, 71, after a visit to Nishikagawa hospital to see a doctor. Kayoko opened up to Watanabe, and told him that some parts of her memory were foggy. "This is a sanctuary. I don't have to worry about how I might seem to others and can relax," she beamed with a smile while holding a cup of coffee.

Watanabe realized that something wasn't right in the summer of 2014. He was the chairman of a business organization in the Kagawa Prefecture city of Kanonji, and regularly attended a conference in the prefectural city of Takamatsu. One day he got lost on his way back from a meeting even though he was on a familiar driving route. By winter, he was making frequent calculation mistakes and found it increasingly difficult to understand what was being discussed at conferences. There were things he could not recall, and at last he consulted a doctor on his son's advice. "No way. Please stop joking," Watanabe thought after he was diagnosed with dementia in the spring of 2015.

Unable to accept what he had been told, Watanabe consulted other medical facilities, but was diagnosed with the same ailment. A cheerful guy with a wide circle of friends, Watanabe became overwhelmed with anxiety and isolated himself inside his house. He weighed 84 kilograms before the diagnosis, but lost his appetite and thinned down to about 60 kilograms. Watanabe got frightened when he imagined his future self like an older acquaintance who had turned violent and forgot the faces of friends after coming down with dementia.

Participants learn how people with dementia and their family members might feel, at a Link Worker training program in Kyoto Prefecture on Aug. 30, 2018. (Mainichi/Yuki Noguchi)

Watanabe was occasionally taken out by his 75-year-old wife who watched over him. He felt less fearful as he attended lectures by experts and learned more about dementia, and eventually confronted his ailment. He started working as a counselor at the cafe in Nishikagawa Hospital once a week last June.

Tomofumi Tanno, 44, who since May 2015 has been working at the peer dementia consultation service "Orange door" in the Miyagi Prefecture city of Sendai, and who himself has early-onset Alzheimer's, recommended that Watanabe be hired as a peer counselor. Tanno came to know Watanabe at a gathering for people with dementia when he visited the city of Mitoyo in May last year. He suggested to Nishikagawa Hospital director Tomotake Otsuka, 55, that, "patients with dementia feel safer when another person with the ailment assures them that it's all right," based on his experience as a counselor. Director Otsuka accepted Tanno's proposal and agreed to hire Watanabe for the job.

Watanabe has already given advice to 23 people. He offers coffee to those at the cafe who look depressed because of anxiety and sometimes mentions his own experience. "A person diagnosed (with dementia) has a heart as delicate as glass. I feel happy seeing patients become lively and willing to talk without being prompted after they visit a couple of times," says Watanabe. His own dementia makes it difficult for him to use computers, but he has no problem with consultations. Watanabe often comments with a sense of fulfillment, "I get to hear a lot from patients."

Otsuka stated, "People who are anxious and confused right after a diagnosis can feel hopeful by seeing someone who has overcome (a diagnosis) and is full of life. The cafe serves as a place (for patients) to feel that not everything is bad."

Consultation services conducted by people with dementia like at Orange Cafe are attracting attention, and similar efforts were launched in the Aichi Prefecture city of Nagoya in June 2017. People who are diagnosed with early-stage dementia have relatively mild symptoms, which means those with emotional stress are likely to face "a gap in support" since there are fewer care services they can use under nursing care insurance.

The Ministry of Health, Labor and Welfare (MHLW) intends to promote peer support among early-stage patients, to improve the current situation referred to as "early diagnosis, early despair." The MHLW has included a request for subsidies to promote such activities in the fiscal 2019 national budget.

Although post-diagnostic support has attracted attention recently, Kyoto Prefecture implemented a "link worker strategy" based on Scotland's National Dementia Strategy, back in fiscal year 2015. Link Workers are specialists including nursing care workers and nurses that offer support to those diagnosed with early-stage dementia and their family members. Currently, 170 people have been trained through special programs. Twelve Link Workers are assigned to facilities, such as regional comprehensive support centers, in five municipalities in Kyoto. For a period of around a year per person, the government and the Initial-phase Intensive Support Team, which aims to assign Link Workers to all municipalities, cooperate to provide information to people with dementia about their ailment, and urge them to remain active participants in society.

Thirty-eight participants joined the Link Worker training program in Kyoto's Nakagyo Ward, held on Aug. 30 and Aug. 31. Participants learned about the psychological states of patients and caregivers, medical information, and patients' perspectives through talks given by some of them.

Nami Kakegawa, 39, a supporting counselor at a geriatric health-care facility in the city of Kyotanabe in the prefecture is planning to work as a Link Worker starting this October. She said she wanted to "offer post-diagnostic support that's possible precisely because people are still in the early stages of their illness, like introducing (peer consultation) cafes, and helping them think about what kind of medical and nursing care they want to receive."

(Japanese original by Yuki Noguchi, Osaka Cultural News Department)

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