Coordinating care

To meet the requirements for individualized, flexible and compound care solutions, various concepts of coordinating individualized care for home-dwelling persons with dementia has grown forth. Advance Care Planning (ACP) is described as an ongoing process, with repeated meeting points, where involved healthcare personnel, informal caregivers and persons with dementia plan ahead and discuss the persons’ values considering future decision-making (Flo et al., 2016). This concept has been

increasingly implemented within nursing homes and has shown promising results, both to increase patient participation and document their wishes, and in terms of increased staff and family satisfaction (Aasmul et al., 2018; Saevareid et al., 2019).

Although most common in nursing home settings, ACP for home-dwelling persons with dementia has also shown satisfying results (Kelly et al., 2019). It varies, however, to what degree the person with dementia is actuallty involved in the process. A reluctance to initiate the ACP-process has also been reported (Ryan et al., 2017). One of the issues addressed in this case is the gap between the persons’ and caregivers’ wishes and available services or challenges in prognosticating possible scenarios. Another issue is a reluctance to initiate conversations about end-of-life-care, and timing for these conversations to be held, as this has been seen as the main focus of ACP (Ryan et al., 2017). Flo et al. (2016) do, however, suggest that the concept should not be limited to end-of-life issues but should be applied when considering decision-making in general.

For home-dwelling persons with dementia, various concepts of care coordination or case management has been increasingly utilised and tested. In the United Kingdom, the ‘Admiral nurses’ has been a charity funded concept for specialized follow up of persons with dementia and their informal caregivers. The concept is based on relational follow-up and tailormade support with a high focus on supporting the informal caregivers. As such, the concept achieves a high degree of satisfaction from the carers, although with no significant findings considering caregiver psychological or somatical health (Bunn et al., 2016). The concept is also critised for long wait times, large caseloads for the nurses and a lack of clarity considering the Admiral nurses’ role.

Norwegian law instruct municipalities to offer a coordinator and an individual plan for persons in need of long-lasting services and coordinated services and the governmental dementia plan emphasize this as crucial in the care for persons with dementia (Health and Care Services Act, 2011; Ministry of Health and Care Services, 2015). It does however exist an uncertainty about how to implement this for this group and Larsen et al. (2019) describes how healthcare personnel describes this as

irrelevant for this group, despite an expressed need from informal caregivers. Still, to comply to this need the ‘Tiltakspakke demens’ has been adopted by several

municipalities (Nærdal, 2017). In short, the persons with dementia will be provided a primary contact, mostly based in the homecare services, that follows up the person with monthly, one-hour home visits. The concept has shown several beneficial effects in terms of optimizing person-centered care. The primary contacts base in the

homecare services does, however, make follow-up vulnerable as the home visits often have to be deprioritized due to unforeseen events and reduced personnel. The

standardization of duration and frequency of the home visits are also perceived as suboptimal as they are administratively inflexible for individual variation in needs (Nærdal, 2017).

Challenges as described above seems to be common for case management concepts in general within dementia care (Khanassov et al., 2014a). Although with many

variances, the basic principle within these concepts is that the persons with dementia and their informal caregivers are provided a coordinator or case manager whose tasks are to coordinate care and support from various providers and make sure that the care and support received are in line with the persons’ needs and wishes. In the following I will use the term coordinator for these roles. The level of organization for these coordinators also varies; some work within the care services and are part of the daily care and support for the persons, while others to a higher degree cultivate the coordinator role, leaving the practical care and support to other instances. Khanassov et al. (2014a) performed a mixed studies review, including 11 quantitative and 12 qualitative articles, exploring implementation of case management within primary healthcare. They recommend a limited caseload for the coordinators, with frequent contact with both patients and general practitioners and a proactive approach. Further, they point to the importance of clearly defined roles and coordinator competence, especially in terms of communication and ability to cooperate.

In general, the case management or care coordination intervention designs, within dementia care, are criticized for being highly varied, lacking clear definitions of the coordinators tasks as well as being costly (Backhouse, Richards et al., 2017;

Khanassov et al., 2014b; Reilly et al., 2015). As a result, these conceptualisations generally share the same characteristics as we have seen for the single standing interventions; beneficent effects are seen, but the results are inconsistent and ambiguous. According to a Cochrane review, case management for this group might lead to reduced institutionalization and decreased caregiver burden and depression (Reilly et al., 2015). The article does, however, point at inconsistent results when measurements were repeated over several time points. Likewise, Backhouse, Ukoumunne et al. (2017) refers to a reduction in neuropsychiatric symptoms in the persons with dementia and in the burden for informal caregivers when investigating community based coordinating interventions for this group. Again, the authors refer to weak and inconsistent results. Consequentially, they encourage future research to increase rigor in terms of design and implementation, as well as to provide

comprehensive descriptions of the interventions to allow for replication and comparison.

Iliffe et al. (2017) suggests a different approach. They have written a discussion paper to case management based on investigations of different approaches for persons with dementia, across countries. They highlight how adaptation to specific contexts, often on a local level, might determine the initiative’s success. Based on these

observations, they suggest ‘fluidity’ as a concept to consider in future research into the field. This means toning down the standardization of approaches and

acknowledging the need for local adaptations. They call for research looking into crucial components that ensure case management works and descriptions of how concepts are developed and adapted between places. Thus, they suggest that case management concepts need to be ‘fluid,’ that is, they need to be flexible, built on components that are adaptable between contexts.