Dementia Disability Japan

Website collects data on dementia care

“An online database of caregivers’ first-hand experiences with dementia patients is being compiled by universities and other entities in a bid to share effective approaches.”

From The Japan News

August 16th 2018

An online database of caregivers’ first-hand experiences with dementia patients is being compiled by universities and other entities in a bid to share effective approaches.

As many people, including family members, struggle to deal with patients who exhibit behavioral and psychological symptoms of dementia (BPSD) (see below)— delusions, anxiety, aggression or a short temper — institutions such as Osaka University and Kochi University have started the database project, in which experiences of caregivers are collated and analyzed. The results are then presented with ratings to describe the effectiveness of different approaches to various situations.

The project is called Ninchisho Chie no Wa Net (Networking for sharing wisdom on dementia), and the researchers aim to create data effective for dementia care by asking the public to share their experiences.

As of Thursday morning, the site had received 1,055 messages from carers describing their experiences. The information is arranged based on common situations. For example, if a dementia patient insists that they haven’t eaten a meal even though they have, “leaving dishes on the dining table” scored nearly 70 percent as the most effective measure to handle the situation.

When patients ask the same thing repeatedly, an effective approach would be to give a simple response — offering the same explanation each time — which scored 60 percent.

On the other hand, if they claim their belongings have been stolen, telling them “family members are taking care of the item” scores just above 20 percent.

The data are available on the project’s website.

BPSD is said to be alleviated if the sufferers are looked after appropriately, but it remains unclear what interventions are effective. The website, which was created with a government subsidy to collect such data, has been open to the public since June 2016.

The website first has caregivers enter such information on dementia patients as their year of birth and the level of care needed.

The caregivers then write about their experiences handling situations, including what happened, how they intervened and whether the interventions worked well.

The messages are categorized and tallied according to different situations and how to deal with them, after having been checked by doctors and others linked to the project.

The website has had more than 200,000 page views.

“After my husband became extremely afraid of the power indicators on electronic appliances, I moved things around in the house, using information on the website as a reference,” said a 71-year-old woman who lives with her husband, who has dementia, in Hyogo Prefecture.

“It’s valuable, because accounts of failed experiences make me think, ‘We’re not the only one in difficulty,’ and help me feel at ease,” she added.

Kochi University Prof. Hiroaki Kazui, who represents the research group, said: “The more anecdotal experiences are collected, the greater the credibility of the data. As such information becomes valuable data to consider ways to cope with BPSD, we want many people to cooperate.”

■ Behavioral and psychological symptoms of dementia (BPSD)

Symptoms attributable to combined factors such as the living environments and personalities of patients, as well as core symptoms including deterioration in memory and judgment caused by the breakdown of brain cells. BPSD includes various symptoms such as anxiety, loitering, agitation, abusive language, violent acts and day-night reversal. BPSD could become a serious concern for caregivers, but in many cases, it is said to be alleviated with appropriate interventions.

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