[HGPI Policy Column] No. 27 – From the Dementia Policy Team – Progress on Implementing and Disseminating the National Framework for Promotion of Dementia Policies, Part 2
• Information regarding the implementation status of the National Framework for the Promotion of Dementia Policies in the second year since it was revealed in 2019 was compiled and presented. While smooth progress is being made on each measure despite the limitations imposed by the COVID-19 pandemic, challenges facing each measure were also described.
• This column focuses on three measures: dementia consultation services, Initial-Phase Intensive Support Teams for Dementia, and the network for wellness monitoring.
• During future opportunities to follow-up on the National Outline for the Promotion of Dementia Policies, I believe it will be necessary to involve people living with dementia or patient advocacy organizations representing them. I also have high expectations for greater involvement for these parties during policy assessment, which can be achieved by publicizing their comments and other feedback regarding the state of progress or through similar actions.
To begin, I would like to digress a bit and share that following the birth of my first child, I have been on childcare leave for six months from November 2021 to the end of April 2022, which is why there was a gap between updates to this column. I have now returned from leave and my days of balancing work and child-rearing have begun.
Until now, I have had almost no opportunities to interact with infants. When I began childcare leave, I had only ever attended an hour-long childcare class for first-time expectant fathers hosted by my local government, so I was stepping into the unknown. While the past six months have made me keenly aware that child-rearing is demanding, time-consuming, and requires great attention to detail, I also experienced just how enriching it is to see your child growing little by little each day. My child has been growing healthy and is now over 6 months old. I feel great happiness being able to see them smile happily, eat well, and sleep peacefully.
Six months of childcare leave went by in the blink of an eye. Looking back on the arrival of our new family member, the days were jam-packed and very fulfilling for all three of us. The first month in particular was very demanding, both mentally and physically. We could only get sleep here and there, and our child cried most of the time they were awake. There were times it was difficult mentally for both my wife and I. Fortunately, our household was able to get through this period by encouraging and supporting each other, but the experience made me realize just how difficult it would be to go through a similar situation alone. Postpartum depression is already recognized as a major social issue, but non-birthing partners also experience considerable mental and physical fatigue when caring for newborns. The experience made me even more aware of how difficult it must be for women whose bodies have been severely damaged by childbirth.
Today, people can gather information about child-rearing on topics like sickness, injuries, and nursing care in advance through various first-hand accounts. Such stories are highly valuable and very useful when getting ready for a baby, but at the same time, there are many things you do not learn until you experience them yourself. It is for this reason these past six month helped me reaffirm the importance of listening to the voices of the people most affected as well as people in various positions when shaping society.
In December 2021, a progress report on the National Framework for Promotion of Dementia Policies was published on the website of the Prime Minister’s Office. As we mentioned in a column last year (“Progress on Implementing and Disseminating the National Framework for Promotion of Dementia Policies” ), this progress report is an annual follow-up on the National Framework for Promotion of Dementia Policies, which was formulated in 2019.
Last year, on December 20, 2021, the Ministerial Council on the Promotion of Policies for Dementia Care held a meeting where progress reports were shared and compiled. There, they reviewed implementation status as of June 2021 for each goal set for the plan period, which lasts until 2025. The results of those reviews were then presented as reference materials.
While I have already mentioned this, the end goal is not creating policies; what is important is determining if policies have been fully implemented and if they have generated results. As a policy think tank, HGPI is proud to play an important role in keeping a close eye on these developments and communicating our findings to society. This column will continue these efforts from last year to introduce some key points and future recommendations based on the results in the progress report.
1．Promoting awareness and supporting efforts from people with dementia to disseminate their stories and opinions
(2) Increasing awareness toward consultation offices
“Increase awareness toward dementia consultation services by 20% among related parties and by 10% among citizens” (Target year: 2025)
This goal was set as a specific KPI regarding the establishment of consultation services as well as to build awareness toward their existence, starting with integrated community support centers and medical centers for dementia. Last fiscal year, questions on the public’s grasp of these services were included in the Survey on Needs in Long-term Care and Prevention and in Spheres of Daily Life to measure awareness levels toward dementia consultation services.
During the recent progress check, referring to the results of the FY2019 Survey on Needs in Long-term Care and Prevention and in Spheres of Daily Life, it was reported that “53.7% of related parties and 29.2% of citizens were aware of dementia consultation services.” Moving forward, we can assume these numbers will serve as the baselines for determining when awareness has increased by 20% among related parties and by 10% among citizens.
Although integrated community support centers are becoming more firmly rooted throughout society, it is difficult to say they are in easily visible positions, and they have different names depending on the region. In other words, much work must still be done to popularize these centers. The presence of various Government consultation services can also be viewed as a reason for low awareness toward these consultation services among members of the general public, so rigorous efforts will be necessary.
For example, Setagaya City, Tokyo is divided into 28 zones where Community Development Centers, Centers for Peace of Mind and Health (or “Anshin Sukoyaka” Centers, which are integrated community support centers), and Social Welfare Council Ward Offices have been integrated as “Welfare Consultation Offices.” (For more information, please see the “Welfare Consultation Offices ” section of the Setagaya City website.) These services offer one-stop consultation services to all visitors regardless of age or consultation content and, after confirming visitors’ needs, they connect visitors to the appropriate departments and organizations. I believe their efforts will clarify consultation services and lower hurdles for people who come for consultations.
In addition to informing citizens about consultation services, it will also be necessary to consider how the flow from consultation to support can be made easier to understand from users’ perspectives.
3. Providing support for healthcare, caretaking, and long-term services and for long-term care providers
(1) Establishing systems for early detection, early response, and healthcare
“Make 40,000 Initial-Phase Intensive Support Team visits per year nationwide, with 65% of those visits connecting people to healthcare and long-term care services” (Target year: 2025)
Initial-Phase Intensive Support Teams for Dementia have been discussed regularly in our previous columns, so please refer to those columns for more details on support teams. (Details regarding these teams are given in HGPI Policy Column No. 6, “The Current Situation Surrounding the ‘Blank Periods’ after Diagnosis in Japan.” )
For FY2020, it was reported that 16,353 people were visited, and that among those visited, 79.6% were linked to healthcare, 66.9% were linked to long-term care, and 63.7% were linked to both healthcare and long-term care. I have heard from many people serving in these fields that during the COVID-19 pandemic, it has been extremely difficult to grasp information regarding residents because interactions in communities have been limited. Although visits fell far short of the target, we can see that even with a limited number of cases, a number of people are successfully being linked to healthcare and long-term care services. It is safe to say the devoted efforts being made by multi-disciplinary Initial-Phase Intensive Support Teams for Dementia are bearing fruit.
At the same time, for individuals with dementia and their families, it is said that in addition to needs for healthcare and long-term care services immediately after diagnosis, recently diagnosed individuals must also learn to accept their diagnosis and obtain an accurate understanding of dementia. In the future, Initial-Phase Intensive Support Teams for Dementia should also be able to connect people to mental health care that includes peer support, although achieving this will require time and economic costs to be taken into consideration. As represented by link workers in Scotland (for details, please see HGPI Policy Column No. 7, “Best Practices in Post Diagnostic from Overseas and Suggestions for Japan”), providing mental health care immediately after diagnosis is essential for helping people maintain stable daily lives thereafter. In the future, I have high expectations for mechanisms that will allow people diagnosed with dementia and their families to be supported by the three pillars of healthcare, long-term care, and peer support with Initial-Phase Intensive Support Teams for Dementia serving as points of entry.
4. Promoting the creation of barrier-free living for people with dementia, supporting people with early-onset dementia, and encouraging social participation
(1) Promoting barrier-free living for people with dementia
“Build networks to monitor for safety and well-being that enable responses across municipalities”
To enable people with dementia to live in their own homes with peace of mind, it is important to build networks to monitor their safety and well-being. In urban areas, in particular, the ranges of activities in which people can engage can be expanded dramatically through the use of public transportation and similar services, so it is essential for these networks to have the capacity to respond across municipalities.
One of the results reported for efforts in FY2020 was the construction of a network for monitoring safety and well-being that spans municipalities in 40 prefectures. For reasons relating to the fact that prefectural governments are required to call on municipal governments in their region, the specific number of municipalities and the areas covered has not been disclosed, but we can see a system is being established gradually.
For one example, we can look to the “Urayasu City Basic Ordinance on Dementia Coexistence,” which was approved by Urayasu City, Chiba Prefecture on March 11, 2022:
(Promoting wide-reaching regional collaboration)
Article 18: The City shall endeavor to establish a collaborative system with Chiba Prefecture, neighboring municipalities, and related organizations for providing effective support to people living with dementia and their families.
2. When it has been determined the safety of a person with dementia is threatened, when necessary, the mayor may request cooperation from Chiba Prefecture, neighboring municipalities, and related organizations to ensure the safety of the person with dementia.
(Source: Urayasu City website)
As we can see, Urayasu City has formulated a regulation that reflects the importance of collaboration that spans a wide region, which is fitting for an urban area located near Tokyo. I think these provisions will serve as good examples for other municipalities to refer to when formulating regulations or plans for promoting measures for dementia in the future.
Rather than the number of prefectures covered, this article prioritizes the number of municipalities and the span of coverage for the population in question. I think that also disclosing such information is likely to make it possible to evaluate this policy from the perspectives of members of the general public.
Conclusion – Recommendations for future policy evaluations
As discussed in the previous column, the Government’s progress report gives a detailed look at current circumstances, including progress on KPIs for each measure. In that regard, it is a wonderful initiative. However, as mentioned in the previous column, the report itself is not easy to read. This may not pose a problem for people who handle dementia policy on a regular basis, but for members of the general public who are not as familiar with these policies, it is difficult to understand. In recent years, the Government has been devoting efforts toward disseminating information and digitalization. Creating websites that visualize how policies are formulated and evaluated in a series and presenting clear and transparent reference materials will be issues for the future.
As a recommendation for the future, I would like to see people living with dementia and patient advocacy organizations that represent them to be involved during policy evaluations like the one discussed above. While it is of course important for detailed internal evaluations to take place, it will be possible to achieve more significant policy evaluations if external evaluations and comments for the future from patient advocacy organizations and similar groups are also presented alongside evaluation results. For example, previously discussed, the Scottish Government has been collaborating with dementia support NGOs since its national strategy was in its formulation stages. That collaboration is also taking place during the evaluation stage. In domestic regulations for dementia, some local governments have started including people living with dementia and their families on dementia policy evaluation committees. To conclude this column, I would like to recommend similar actions be taken for Japan’s national dementia policy.
About the author
Shunichiro Kurita (HGPI Manager; Steering Committee Member, Designing for Dementia Hub)
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