[HGPI Policy Column] No. 11 – From the Dementia Policy Team – The Spread of Coronavirus Disease 2019 and Continuing Everyday Life in a State of Emergency
date : 5/15/2020
• In many countries, dementia supporters are working their hardest to help people with dementia continue familiar everyday routines despite disruptions from COVID-19.
• It seems that the use of digital tools to provide support to people with dementia is not as advanced in Japan as it is in other countries.
• First and foremost, we must have mutual understanding towards each other’s situations, and we must have sympathy for one another.
In our previous column, we shared our feelings concerning Diet discussions on the declaration of a state of emergency and explained the importance of legislation for such a declaration. Since then, it feels as if the situation surrounding Coronavirus Disease 2019 (COVID-19) has only grown more serious. Seven prefectures were placed under a state of emergency on April 7, 2020, and a nationwide state of emergency was declared on April 16. On May 4, the state of emergency was extended until May 31. Over this long period, various businesses have received requests to suspend operations and people have been asked to shelter in place, resulting in disruptions to the everyday lives of many. In this column, we would like to examine the circumstances into which these events have placed people with dementia and their families.
To better understand the current situation in Japan and abroad before writing this column, we attended “Supporting People with Dementia during COVID-19 ” hosted online by Alzheimer Disease International (ADI) and “Webinar: Living with Dementia during COVID-19 and How We All Can Help ” hosted online by Australia’s Older Person Advocacy Network (OPAN). To get a more direct understanding of the situation, we also spoke to Ms. Jan Beattie from Alzheimer Scotland, Mr. Takahiko Yamade from NGU, and Mr. Kenichi Yamazaki from GrASP. We express our heartfelt gratitude to everyone who lent their cooperation.
Helping People with Dementia Maintain Familiar Daily Routines
In both Japan and overseas, the primary concern among caregivers is the same: helping people with dementia continue living daily lives as close as possible to the ones they are used to. As each country is making shelter-in-place requests and imposing other social restrictions, people with dementia are not only unable to receive normal levels of care, they also have fewer opportunities for face-to-face interactions in their communities. Many believe that the current circumstances have increased the risk of people becoming isolated. Isolation can cause dementia symptoms to worsen, and there are concerns that it may be impossible for some to return to previous routines when the COVID-19 pandemic ends. Therefore, supporters in every country believe it is essential for services providing support for everyday living – like day care services – maintain operations.
It is important to note that many people with dementia are elderly, so they are at greater risk of developing serious symptoms if infected with COVID-19. This has caused a few families to suspend care services at the day care facilities operated by Mr. Yamade and Mr. Yamazaki.
If people with dementia are confined to their homes for long periods, it is likely that the burden placed on caregiving family members will continue to grow. In ADI’s online seminar, it was reported that efforts are being made in various countries to provide mental support and information to caregiving family members, making that another shared issue in support efforts around the world.
Right now, people with dementia, their families, and caregivers are living with the risk of COVID-19 on one side and the risk of dementia progression on the other. Everyone agrees it is best to maintain familiar everyday living and is doing their best to cope with unfamiliar routines.
Note: The U.K.-based dementia support NGO Alzheimer’s Society has created and presented support guidelines entitled, “How You Can Support People with Dementia in Your Community .”
Making the Most of Digital Tools
The most noticeable difference between Japan and other countries is in the use of digital tools. At the ADI online seminar, numerous examples were shared of support organizations in every country using online tools to continue services for people with dementia or their family members. In addition, Ms. Jan Bettie from Alzheimer Scotland told us that staff members at Alzheimer Scotland are using an online tool from the National Health Service (NHS) called NHS Attend Anywhere to provide support to people with dementia and their families. There are some people in every country that cannot access online support, so to allow them the same level of care, supporters in many countries are providing telephone support while keeping in-home visits to the minimum.
Meanwhile, in Japan, we have not found many examples of online communication tools being used to provide support to people with dementia and their families. The Ministry of Health, Labour and Welfare (MHLW) allows long-term care service providers to use online tools.*1 In practice, not only is it difficult for people with dementia and their family members to use said tools, it also seems there is some hesitancy towards their use due to concerns that they will lower the quality of care, such as by making it harder to assess the living situations of people receiving support compared to in-person support. We believe there must be some long-term care centers that have made progress on these issues and have started implementing online support, so examples of their best practices must be gathered and publicized. (If readers know of any such care centers, please contact us.)
An OECD study showed that although average internet usage rates are high in Japan, usage rates for people age 55 and over are significantly lower compared to the nine other countries with internet usage rates of over 90%. In Japan, internet usage rates for this age group are in the 70% range and there is a significant usage gap between generations (see chart below).*2 In addition, according to the latest study from the Ministry of Internal Affairs and Communications (MIC), usage rates are approximately 50% among people over age 70, which is much lower than other age groups.*3 This age group has high usage rates of long-term care services, but it is likely that many of them cannot access online tools.
Source: OECD. 2017. “CHAPTER 4. ICT USAGE AND SKILLS, Figure 4.9 Internet users by age, 2016.” OECD Digital Economy Outlook 2017.
When we spoke to Mr. Takahiko Yamade and Mr. Kenichi Yamazaki to prepare for this column, it was clear that both of these long-term care service providers are working extremely hard to help those using their services maintain the everyday lives they are most accustomed to. As the current circumstances force everyone to stay in and shelter in place, Mr. Yamade and Mr. Yamazaki’s services are being operated with the utmost care to every detail to prevent infection and serve as the final bastion of the previous, familiar lifestyles for the people receiving care.
Mr. Yamade stressed that he wishes that everyone – people with dementia and people without – do their best to live each and every day without letting the information sway them. He said that it is because we are facing circumstances that make one weak of heart, it is that much more important for each of us to avoid being shaken by worrying information. While doing so, we must take whatever preventative measures possible and maintain our presence of mind to continue our familiar everyday lives.
Mr. Yamade also said that he would like long-term care service providers to take this opportunity to reflect on past long-term care services and reexamine the best methods of interacting with people with dementia.
While all of society is not functioning as normal, Mr. Yamazaki requests understanding for efforts to help people with dementia live familiar everyday lives. Speaking from his experience as an occupational therapist, he says that people with dementia value opportunities to go outside for exercise and visit places like parks. Lately, however, visiting parks in groups tends to draw unpleasant stares from other park goers. He says that sudden changes to the environment have particularly large effects on people with dementia, so it is that much more important for them to continue their normal routines. He would like as many people as possible to understand this.
Right now, we are living with an unprecedented disturbance to our daily routines. It feels that our efforts to maintain distance from one another to prevent the further spread of COVID-19 have, at some point, caused us to grow apart from each other psychologically. Everyone is feeling uneasy right now. There isn’t much that any one person can do to overcome the current situation, so it is best if we are considerate towards people facing different situations than ourselves without being swayed by information.
*1 Ministry of Health, Labour and Welfare. 2020. “Summary of Temporary measures for handling of personnel standards, etc. at nursing care service offices in response to COVID-19.” Last retrieved April 29, 2020. https://www.mhlw.go.jp/stf/seisakunitsuite/bunya/0000045312/matome.html#0201
*2 OECD. 2017. “CHAPTER 4. ICT USAGE AND SKILLS, Figure 4.9 Internet users by age, 2016.” OECD Digital Economy Outlook 2017.
*3 Ministry of Internal Affairs and Communications. 2019. “2018 Communications Usage Trend Survey: (1) Internet usage trends,” 2019.
About the author
Shunichiro Kurita (HGPI Manager; Steering Committee Member, Designing for Dementia Hub)