Building a community space for caregivers
The current scope of the caregiving environment
Currently, in Japan, there are approximately 6.9 million people in need of nursing care and support. Family caregivers number approximately 6.35 million nationwide, and in 70% of the cases, family members play a major role in providing care, with relatives taking the lead in caring for the elderly at home. However, caregiving often becomes a burden for family members, as 60.8% of caregivers providing care at home said "they have worries and stress in their daily lives". It is also estimated that about 2.8 million caregivers will be needed by 2040, but there will be a shortage of about 690,000 workers.
There is more demand in the number of caregivers now, but there are still few places and support systems to care for them. In order to attract human resources to the nursing care field, it will be important to provide "care for caregivers" by creating an environment that facilitates care, motivates caregivers, and reduces the burden on caregivers.
(Ministry of Internal Affairs and Communications, "Basic Survey of Social Life"; Ministry of Health, Labour and Welfare, "National Survey of Living Standards")
Transforming narratives into "healing"
Caregiving starts in unexpected circumstances and accidents, and caregivers usually have frustrations of not having specialised knowledge, access to real voices, and personalised support. It is impossible to keep up with all the information or approach caregiving from a holistic perspective without any knowledge and what is written on the internet and general information is far off from the reality of caregiving. Circumstances including family situations and the level of caregiving differ for each individual, but it is difficult to receive support tailored to each situation.
However, caregivers rarely have opportunities to casually complain, discuss their problems, or express their feelings. Caregivers are strongly aware and are expected that they must always be in a position to provide care and that they must be strong, and this leads to a burden on caregivers and caregiver fatigue.
In the environment of care, having others listen to individuals' narratives leads to "healing. Communication is often one-way, with the caregiver listening to the care recipient's narrative. Applying the way in which care recipients tell their narratives to a place where caregivers tell their narratives and engage in dialogues will lead to "healing" for the caregivers.
Community space for caregivers
This community space works as a space for empathy where users can casually chat about their concerns, a space to exchange information with other caregivers that they may not be able to obtain from official platforms, and a space to reflect on their acts of caregiving and feel a sense of accomplishment from an objective point of view by listening to other caregivers' narratives.
According to interviews with caregivers, knowing that this kind of place exists gives users a sense of security to be able to talk to someone and to be listened to when necessary. They are likely to be hesitant to initiate the conversation, so a professional such as a counsellor is needed to ease the users into talking. A certain type of facilitation is necessary to initiate dialogues so that the users can tell their narratives.
Also, users may not want to talk to other users, but would still want to know how other caregivers are feeling about their caregiving situations and the facility. It would be better if there was a bulletin board where users could write down information and thoughts so that they could be shared. This space prevents the caregivers from being isolated, but at the same time, the interaction and communication with other users should not be forced.
When users visit their care recipients in nursing homes, they rarely have the opportunity to interact with other residents' families. This is often due to negative images of caregiving and excessive respect for privacy. Having an environment where caregivers can talk more openly about their own caregiving will change the image of caregiving to a positive one and help caregivers take pride in the act of caregiving. In this space, caregivers will play a leading role, and talking about their own caregiving will give hope to those who will become caregivers in the future.
What does this community create?
In our society today, moving into a nursing home is not only an issue for current care receivers but is also related to all stakeholders. It is important that the caregivers are able to visualise themselves living in the community in the future while taking care of the care receivers. Nursing homes are still perceived as a place to maintain the status quo and therefore lack activeness and excitement. This community could change the current perception of caregiving, and consequently create motivation and hope for and with all stakeholders when facing the ending phases of their life stories.
Caregiving is a process within the process of moving toward the end of life. The subject of "death" is not talked about openly, as everyone has a fear of decline and an unwillingness to accept it. However, it is part of caregiving to understand and imagine how we want to face the end and how we want our families and others to guide us. By discussing the topic of end of life in this community, each individual is able to get a clearer picture of what “end of life" means to them.
