Dementia research helps sufferers lead independent lives

With 27% of the Japanese population aged over 65, putting the country into the ‘super-aged’ category globally, university projects on dementia are in the spotlight as Japan races to meet the needs of an expanding ageing population.

Ongoing studies in Japan to help to create a safe society for the elderly and help them live more independently will contribute to mitigating rising demographic-related health concerns across the world, as part of the Sustainable Development Goals (SDGs) – in particular, SDG 3 on healthy lives, SDG 10 on combating inequalities and SDG 11 on access to basic services – experts say.

Japan’s budget for dementia prevention and support for people with dementia in society in 2022 was JPY12.7 billion (US$88 million). In 2023 the budget was JPY13.2 billion (US$91.6 million), according to the Ministry of Health, Labour and Welfare.

“With more people expected to develop diverse forms of dementia as the number of elderly increases in Japan, research is focusing on a holistic approach based on a combination of science, medical treatment and social well-being,” explained Masaru Mimura, professor emeritus of Keio University’s Center for Preventive Medicine and a specialist in psychogeriatrics.

Mimura is a participant in collaborative research on care for people with cognitive impairment under the Keio University Global Research Institute’s longevity cluster that covers genetic testing for Alzheimer’s disease, drug development and rehabilitation, including meditation.

Dementia is defined as memory impairment caused by damage to the brain’s nerve cells, resulting in judgement disability. There is no known cure targeting the root causes.

By 2025 Japan is expected to have more than seven million people over the age of 65 diagnosed with cognitive decline, affecting their lifestyles. This time-bomb has made dementia a top national concern. In mid-June, the Japanese parliament passed new legislation – the Basic Act for Dementia to Promote Creation of an Inclusive Society – recognising the right of people with dementia to live with hope and dignity.

Living independently and with dignity

A key thrust of the new act is to take the voices of people with dementia into account to better promote their independence.

In addition, Japan will set up the headquarters for an agency dedicated to dementia treatment and research, directly under the prime minister’s office, which will develop a plan to address the challenges associated with people suffering from dementia and their families. These include improving transport options and access to services, and the development of products that are user-friendly for sufferers.

In 2021 Japan appointed Tetsushi Sakamoto as its first ‘Minister of Loneliness’ to raise awareness of the increasing number of people living in social isolation, especially the elderly. This initiative was based on scientific research that linked dementia to a decline in mental health, such as depression and loneliness, including high suicide rates among the elderly.

By 2040, 40% of Japanese households headed by people over 65 will be single member households, according to the National Institute of Population and Social Security Research, affiliated to the Ministry of Health, Labour and Welfare.

Satoko Hotta, professor at Keio University’s Graduate School of Health Management, is a leading advocate of creating a society where people do not fear having dementia.

Based on her research, which involves collaboration between experts and listening to people with dementia, she has found evidence that dementia patients are capable of playing an active role in society when they feel connected.

“Analysis has revealed that affected people can be happy and active when people around them spend time listening to their voices,” she said, noting that this is critical for changing the view that dementia is a social problem.

“If the physical environment, social systems, culture and customs and people’s ways of thinking are updated, the difficulties caused by the deterioration of cognitive functions will likely diminish,” explained Hotta.

A case in point is the success of the ‘Restaurant of Mistaken Orders’ representing pop-up cafes in Japan, which promotes the concept that mistakes made by staff who are affected by memory loss are normal and can even be fun for customers. Currently, around 6,000 such cafes employ people with dementia in Japan, according to ministry figures.

The naming of these restaurants “allowed customers to enter with an open mind. They expected mistakes so were OK with it. It created an air of easy-going acceptance”, says restaurant manager Shiro Oguni in a promotional video. He hopes this can lead to a more tolerant and open society, as customers of such restaurants reported a high satisfaction rate.

Designing for Dementia

In 2018 Hotta launched the ‘Designing for Dementia Hub’, which is a platform for stakeholders, people with dementia, their families and caregivers, businesses, municipalities, ministries and researchers to work together to create a society where people can live well with dementia.

One of the key activities is conducting interviews with people with dementia. Learning from ‘experts by experience’, they gain insights into what people with dementia want, the challenges they face, and effective ways to live with those challenges.

Another focus is ‘Inclusive Design’, comprising young designers involved in disseminating information to the public on the importance of listening to people with dementia to develop a more dementia-inclusive community.

For example, when a person with dementia says they are afraid to go shopping, it should be treated as a hint that the community is not equipped to be comfortable for such people.

Affected people are commonly concerned about being able to express their needs – such as going for a walk or meeting friends – to their caregivers. Keio University’s ‘Micro Happiness’ programme led by Hotta, collects data on people with dementia in collaboration with others. Analysis of this data has shown that listening to their needs and allowing them to take their own steps have resulted in more happiness and hope.

Japan has seen several breakthroughs on maintaining independence. According to Hotta, some people diagnosed with dementia are employed in companies as salespeople, work as child care providers or in school kitchens using long-term care services – meaning these people are receiving official care and working. They are paid for their work, a practice that is special to Japan and uncommon in other countries, according to Hotta.

Such programmes are a step towards a society that can adapt to dementia, noted Hotta, who said this system can also help to ease Japan’s labour shortage. The country’s severe care sector labour shortage has meant that automation in healthcare is viewed as a solution, but this may not be the only approach for those with dementia.

Surveys show such dementia-inclusive activities also change nursing attitudes, indicating an emerging acceptance among caregivers to shift their schedules to spend more time with residents in nursing homes. Family members also report greater satisfaction when they see their loved ones.

Easing the caregivers’ burden

However, challenges remain. Dementia has an impact not just on those who suffer from it, but also on their caregivers, particularly within the family who provide unpaid, informal care. Additionally, societal changes make it more difficult for older people to rely on younger family members.

Changing family structures with low marriage rates and families having fewer children who can provide care in their old age are a risk for the elderly.

Research on ageing and informal care by Yoko Ibuka, professor of economics and an expert on health economics at Keio University, has focused on the impact on carers of caring for people. She found that mental health issues are a heavy burden on females compared to their male counterparts.

Ibuka’s research has noted the Japanese tradition that expects women to care for the aged, with a particular emphasis on wives taking care of their mothers-in-law, which is not sustainable given modern lifestyles with nuclear families, larger numbers of single women and low birth rates.

The results of her research indicated “a loss of social networks and social activities based on human networks that negatively affect caregivers’ health and well-being”, Ibuka said, adding that her research provides evidence for policy-makers to mitigate the negative effects of caregiving with targeted interventions while formulating policies to support informal caregivers with better social networks.

This is the third, and last, in a series of articles on the Sustainable Development Goals in partnership with Japan’s Keio University. University World News is solely responsible for the editorial content. The first in the series is here and the second is here.