Effects of the Participation and Involvement of Medical Professionals in Dementia Cafés on the Attendance of People with Dementia Living at Home and Their Family Caregivers

INTRODUCTION

As of 2012, the number of people with dementia in Japan was estimated to be 4.62 million, which accounts for one out of every seven older people, and this number is expected to continue increasing until at least 2025 [1]. As of 2015, it was estimated that the number of people with dementia worldwide was 46.8 million [2]. Dementia causes a decline in cognitive function, which leads to a decline in the ability to perform activities of daily living, thereby threatening autonomous living. In addition, dementia is said to place a heavy burden of care on family caregivers [3]. These difficulties faced by people with dementia and their families also tend to cause stigma, which is another barrier to living with dementia [4].

As a way to address these issues, there is a growing trend to establish dementia cafés in the community as places where people with dementia, their families, community members, and professionals can gather to discuss dementia and share their experiences casually [5–11]. In the Netherlands, a pioneer of dementia cafés, the Alzheimer’s Café was launched in 1997, and since that time, has expanded nationwide [5]. In Japan, the establishment of dementia cafés has been recommended as part of the national dementia policy, and by the end of fiscal 2018, there were reportedly about 7,000 cafés nationwide (about one per 20,000 people) [12]. At present, dementia cafés in Japan do not have clear standards regarding the frequency of meetings, staff composition, training requirements for the staff, locations, and management entities. The advantage of this is that it allows for a high degree of flexibility and diversity in the cafés. This may also make dementia cafés in Japan more attractive and lead to an increase in terms of numbers. On the other hand, as a disadvantage, it remains unclear what functions dementia cafés have, what effects are expected from their existence, and what kind of financial support is appropriate for policymakers.

In such a situation, it is important to verify the effectiveness of dementia cafés, but as a preparatory step, it is first necessary to define how dementia cafés should be operated, i.e., their frequency, programs, staff composition, staff qualifications, and relationships with local social resources. Previous studies have compiled information on the implementation of 1,335 cafés in Japan, which has started to provide insights into the most effective types of implementation and operations [12]. In addition, the creation of self-assessment forms has led to discussions regarding what skills are required for dementia café staff [13].

However, many issues regarding the management and significance of dementia cafés still need to be addressed. First, the conditions of people with dementia vary, from the mild stage, in which people can live relatively independently, to the severe stage, in which people must live with care services. It remains, however, unclear under which conditions people with dementia attend dementia cafés from the viewpoint of independence in daily life or nursing care usage. It is also important to clarify the relationship between the attendance of people with dementia and involvement of medical professionals as dementia café administrators or staff. Second, it is assumed that many people with dementia who attend dementia cafés are in the early stages of the disease, and in such cases, it is desirable that medical professionals refer people with dementia to a nearby dementia café as a form of post-diagnostic support. However, it remains unclear whether medical professionals are actually referring people to dementia cafés. Third, while many dementia cafés are run by local residents and people in the care and welfare fields, it remains unclear to what extent these cafés collaborate with medical institutions, e.g., by introducing themselves using flyers. Fourth, when people in the early stages of dementia participate in a dementia café, it seems desirable for them to play an active role, but the actual situation also remains unclear. Given this background, this study aimed to gain a better understanding of these issues and to analyze the role played by medical professionals in particular. By clarifying these situations, we hope to propose a more desirable way of managing dementia cafés. In addition, active collaboration of stakeholders through dementia cafés would help avoid fragmentation of dementia care in the community, which is a serious challenge in the field [14–16]. Therefore, if involvement of medical professionals has a positive effect on dementia cafés, it would be important to discuss the significance of their role in strengthening integrated dementia care in the community.

MATERIALS AND METHODS

RESULTS

Individual cafés were most frequently held once a month for 2 hours. The most frequent café program was a scheduled combination of a short educational lecture, music, and café time. Programs involving recreational events with café time and free café conversations loosely organized by the staff (no fixed schedule) were followed (Table 1). In total, people with dementia played a role in 25 cafés (16.9%) (Table 1). An average of 4.9 staff and 16.6 guests were at each meeting.

Among medical professionals participating as café administrators, nurses were the most common (46.6%), followed by public health nurses, physicians, rehabilitation therapists, and pharmacists, with some overlap in individual cafés (Table 2). Similar results were found for the number of medical professionals participating as staff on the day of the café (Table 2). Proportions of participation of nurses were statistically higher among medical personnel as both administrators and staff (p = 0.01 and p = 0.01, respectively). Medical professionals had introduced guests to 54 cafés (36.5%), with physicians being the most common referrers. In addition, 78 cafés (52.7%) had announced their activities to medical institutions or provided information about the café (Table 2).

A comparison of the total number of staff and guests to the café and the number of people in the community, family caregivers, and people with dementia who visited the café based on whether the café was run with medical professionals revealed that the number of people with dementia living at home was significantly higher in cafés where medical professionals participated as administrators (p = 0.021), as was the attendance of family members of people with dementia (p = 0.016), as shown in Table 3A. In addition, in such cafés, the number of people who participated and played a role was significantly higher (p = 0.008), as shown in Table 3A. The same trend was observed when medical professionals participated as staff on the day of the meeting (Table 3B).

The number of dementia cafés attended by people living at home was also significantly higher when associated with a referral to the café from a medical professional (p < 0.001), and among these, both those who used nursing care insurance services and those who did not use nursing care insurance services were significantly higher (p = 0.005 and p = 0.005, respectively), as shown in Table 4A. The same result was obtained when the café announced its activities to medical institutions through flyers. In this case, the attendance of family members of people with dementia was also significantly higher (p = 0.016), as shown in Table 4B.

DISCUSSION

Dementia cafés are expected to have a multifunctional role in providing psychological and educational support and raising awareness about dementia. In this study, we analyzed the current situation regarding dementia cafés with a focus on the relationship between the attendance of guests and the involvement of medical professionals. The results revealed that medical professionals participated as administrators or staff on the day of the meeting in about two thirds of the cafés. Nurses were the most common medical professionals involved in the café. In about one third of the cafés, the medical professionals had introduced the guests. About half of the cafés had announced their activities to medical institutions. When medical professionals were involved as administrators or staff on the day of the meeting, attendance by people with dementia who are suspected of being in an earlier stage of the disease than those using care services or living in care institutions was significantly higher [17, 18], and significantly more people with dementia played a role. Introducing guests to dementia cafés from medical institutions and making announcements to medical institutions using flyers also had an impact on the number of guests attending dementia cafés. To our knowledge, no previous studies have investigated the involvement of medical professionals or medical institutions in dementia cafés. The results of this study all together revealed that involvement of medical professionals or medical institutions enhanced the attendance of people with dementia living at home and their family caregivers in dementia cafés, and also enhanced the active participation of people with dementia in such cafés. These enhancements will help to increase the significance of dementia cafés in the community.

Dementia cafés are held in the Netherlands, the United Kingdom, and many other countries around the world [5–9, 12, 19–23]. They are expected to serve as a place where people with dementia can express themselves, where families of people with dementia can receive psychological support, and where peer support for people with dementia and their family caregivers can be provided [7, 9, 10, 12, 21, 23]. In addition, participation in a dementia café is thought to reduce stigma against dementia and promote understanding of the disease through interactions among people with dementia, their families, local residents, and medical and nursing professionals [5, 12]. However, although dementia cafés are positioned as a way to deepen understanding of the disease and provide post-diagnosis support, the involvement of medical professionals has not been clarified. In addition to the psychological issues faced by people with dementia and family caregivers, it is also important to provide medical support for cognitive dysfunction, coping methods, symptom relief through medication, and coping with the associated decline in the ability to carry out activities of daily living. It is also important to build a cooperative system between medical institutions, medical professionals, and care professionals in terms of providing post-diagnosis support. For this reason, it is desirable for medical professionals to provide information on the use of social systems and resources, as well as advice on when and where to go for consultations, which may have led to the significance of the involvement of medical professionals in dementia cafés seen in this study. On the other hand, for medical professionals, participating in dementia cafés as administrators or staff to get closer to the living situations of people with dementia and their family caregivers might be meaningful for their learning and experience [10].

While the importance of collaboration to establish integrated dementia care is self-evident, a lack of coordination, often referred to as fragmentation, has repeatedly been pointed out. Fragmentation has an impact on all aspects of dementia care, such as the development of care pathways, post-diagnosis support, the use of community resources, emergency care, and end-of-life care [14–16, 24–28]. This is typically a consequence of the field of dementia care, which involves a large number of medical, nursing, social welfare, and administrative professionals, many of whom have different educational backgrounds and professional training [29]. It can be said that the existence of fragmentation has been a barrier to improving care for people with dementia. The results of this study indicate the significance of the involvement of medical professionals in dementia cafés and demonstrate the potential of dementia cafés to function as hubs that promote collaboration among professionals, volunteers, and local residents in dementia care. In addition, these findings suggest better ways to manage dementia cafés by clarifying the current status and significance of the staff composition and the mutual relationship between cafés and medical institutions. The number of people with dementia is expected to increase in the future, and as a result, dementia care will impose a serious burden on the national economy [30–32]. Improved collaboration among the stakeholders involved could be expected to improve the quality of life of people with dementia while simultaneously controlling costs. With regard to overcoming fragmentation in dementia care, there are reports on the establishment of a community resource coordination system by specialist nurses, development of a dementia-friendly community, the use of a new quality indicator as a cue to raise awareness of fragmentation, and the application of an interdisciplinary team approach for people with dementia who do not visit a hospital of their own accord [33–36]. It is hoped that adding such efforts toward multidisciplinary collaboration in dementia cafés will help overcome fragmentation.

This study had several limitations. First, although this research focused on the involvement of medical professionals, it did not examine the significance of the involvement of professionals in care fields such as social workers, care workers, and care managers. In the future, it will be important to examine the roles played by those other than medical professionals. Second, this cross-sectional study examined the significance of the involvement of medical professionals by using indicators such as whether the attendance of people with dementia who were not using nursing care services increased. Further studies are needed to assess longitudinal changes in the quality of life of people with dementia and their family caregivers. Third, dementia cafés are not the only community resource for dementia care, and the situation regarding community resources varies by region and country. The extent to which the results of this study can be useful as general knowledge will need to be examined in different regions and countries to improve the generalization of our findings.