Interventions to foster family inclusion in nursing homes for people with dementia: a systematic review

Person-centered care approaches are increasingly being implemented in various healthcare settings and are widely recognized as an essential component of quality care [1, 2]. While, ideally, these approaches should involve the person (i.e., the patient/resident), their families (not only the primary caregiver, but all family members (e.g., partners, (grand) children, siblings)), and the care providers, a recent review of systematic reviews has demonstrated that only a minority of person-centered care interventions pay attention to the role of family members [1]. In nursing homes, family inclusion is a central element for the provision of individualized care for people with dementia [3]. As the relationship between people with dementia and their family members has developed over a life course, it is likely that families’ roles continue once a person with dementia enters a nursing home [4‐6]. Early research indicated that it is a myth to believe that family members abandon their relatives that live in a nursing home [7, 8]. In contrast, although their role might change in the sense that they are less involved in the physical care and decision-making [9], they stay involved after the person with dementia moves into a nursing home. Family members’ sharing of information on the person’s biography, meaningful activities and daily life preferences with staff might lead to positive effects for nursing home residents [10]. In addition to people with dementia, family members themselves may also benefit from the inclusion of family in nursing home settings. Family inclusion refers to creating democratic engagement of families within nursing homes, by providing family members with opportunities and resources that empower them to actively participate in their relatives’ life as well as in the nursing home as a community [6]. For family members, being involved in the nursing home may lead to enhanced satisfaction with the care provided to residents and an enriched own wellbeing [11, 12]. At the same time, family inclusion has a potential for conflicts, as different family members (e.g., a son and a daughter of the resident) may differ in their opinion on ‘what is best’ for the resident. As family members provide help to people with dementia in various ways, e.g., through providing hand-on or socio-emotional care or monitoring [13], staff members may also benefit from their involvement. In addition, nursing home organizations as a whole may benefit from the inclusion of family members. From a business perspective, family members in nursing homes are indirect customers who do not purchase services themselves, but only accompany the direct customer [14]. Nevertheless, research has indicated that nursing home organizations may benefit from getting their indirect customers more engaged with the organization [15]. Organizations in different sectors increasingly recognize the importance of (indirect) customer engagement behaviors [15, 16]. These behaviors can be defined as customers’ voluntary, helpful behaviors towards an organization after and beyond purchasing goods or services [14]. Indirect customer engagement behaviors of family members in nursing homes can occur in interacting with staff members, providing feedback or complying with organizational rules and procedures, but also in the interaction with other (potential, indirect) customers, by helping them or by spreading a positive word of mouth or writing online reviews about the nursing home [14].

Although positive effects of family inclusion for residents, family members, staff and the organization as a whole can be recognized, a wide variety of barriers have been identified that hamper family inclusion in nursing homes. In a sociopolitical environment of staff shortages and scarce resources in nursing homes, family members are easily seen as a commodity [6, 17] or as a resource for augmenting staff [18]. While family members in many countries are considered as being able to form an unpaid workforce in nursing homes, adequate support of family members in nursing homes is often lacking [6]. For example, family members are often left alone to deal with complex emotions related to the decision that a loved one has to enter a nursing home [6, 19]. Staff members often find it difficult to collaborate with family members and may consider them as being ‘difficult’ or demanding [20, 21]. While family members need to understand that there are limits to what a nursing home can offer, it is important that nursing home organizations take into account family members’ capacities and personal situation too. Professional caregivers could see family members as a valuable resource in providing person-centred care for their residents, instead of fearing that family may become additional clients themselves and increase their workload. Contextual factors like the geographic proximity, the employment status or family members’ own health status may have an impact on the role family members want to or can play in nursing homes [6]. In addition, Cohen et al. [11] demonstrated that family involvement for residents with dementia is different compared to residents without dementia. They found that while family members of people with dementia spent more time on activities to support resident care (e.g., related to nutrition, mobility or discussing care with staff), family members of residents without dementia spent more time on their social and community engagement (e.g., taking residents on trips, shopping), often outside the nursing home. This demonstrates that, particularly for family members of people with dementia, the tasks often go beyond solely visiting the relative. Instead, family members conduct caregiving tasks that could be considered a staff responsibility, which might be particularly burdensome for family members [11].

In a recent critical examination of how resident care is negotiated among staff and family members in nursing homes, Puurveen et al. [22] conclude that in formal care conferences (also known as case conferences or inter−/multidisciplinary team meetings), family members occupy a ‘marginal position relative to staff.’ Instead of being a dialogic space promoting family inclusion, they found that care conferences are spaces in which staff members perform ‘expert one-way communication’ [22]. Considering the citizen participation ladder of Edelenbos & Klijn [23], five levels of participation can be distinguished, i.e., ‘informing,’ ‘consulting,’ ‘advising,’ ‘co-producing’ and ‘co-deciding.’ Translated to family inclusion in nursing homes, ‘informing’ means that the nursing home organization determines the agenda for decision-making and informs family about decisions only, while ‘co-deciding’ stands for equal shared decision-making between family and staff members. Thus, the degree and type of family inclusion in the care conferences assessed by Puurveen et al. [22] can be classified as ‘informing’ only. To meaningfully contribute to person-centered care, especially for people with dementia, formal care conferences and other interventions aimed at increasing person-centeredness through family involvement should promote mutual exchange and reciprocity between staff and family members and should empower family members to participate as equals [22, 24].

In earlier systematic reviews, Haesler et al. [25‐28] assessed factors that are important in the development of constructive family−staff relationships in the care of older institutionalized adults, including both hospitals and institutional long-term care settings. Based on their most recent review conducted in 2010 [27], they conclude that interventions to promote constructive family−staff relationships were those that include collaboration in care planning and decision-making, promote effective communication skills, define a clear process and involve multidisciplinary healthcare teams. However, as the engagement of family members of people with dementia differs from that of family members of residents without dementia, the opportunities and resources that empower them to actively participate in their relatives’ life as well as in the nursing home as a community might also differ. Specifically for people with dementia in nursing homes, an overview of interventions to foster the inclusion of family members of people with dementia is lacking. A qualitative meta-synthesis conducted by Petriwskyj et al. [29] provides insight into the experiences of family involvement in decision-making for people with dementia in residential care, without considering specific interventions. In 2015, Nguyen et al. [30] published a protocol for a systematic review on interventions to improve communication and cooperation in order to promote effective family−staff relationships for family members of people with dementia living in residential aged care facilities.

The aim of this systematic review is to obtain insight into the content of interventions to foster the inclusion of family members (e.g., partners, (grand) children, siblings) of people with dementia living in nursing homes within the nursing home setting. We take a broad view and do not only focus on interventions that contribute to family inclusion in family−staff interactions, but also take into account interventions to facilitate family−resident or family−family engagement in the nursing home setting. This means that, besides focusing on family−staff relationships, we also pay attention to how to enable family members to better engage with their relatives or with family members of other residents, and therefore consider interventions that contribute to family involvement and give a voice to family within the whole nursing home community. We are predominantly interested in the content of existing interventions, with the aim of contributing to the development of future interventions to involve family members of people with dementia within the nursing home setting.

Figure 1 presents the PRISMA flow diagram of the inclusion process. In total, 29 studies were included (Table 2).

From the broad palette of interventions (n = 24) to foster the inclusion of family members of people with dementia within the nursing home setting identified in this literature study, most were aimed at fostering family inclusion in family−staff interactions (n = 21), while little attention was paid to family−resident or family−family engagement within the nursing home community (n = 6). Only two of the 21 interventions (FIC, PIC-SCU) [35, 41, 44, 50] were targeted at creating partnerships between family and staff members. The other 19 family−staff interaction interventions focused on including family members in formal decisions (n = 9), enabling them to make better informed decisions and/or participate more actively in future interactions with staff (n = 7), or providing psychoeducation for family members to, i.a., improve future interactions with staff (n = 3). Nevertheless, based on the number of studies included in this review (n = 29), it can be concluded that the number of studies of interventions to foster family involvement in nursing homes for people with dementia is increasing. At the same time, the interventions often seem to focus predominantly on staff members. In general, it is difficult to conclude whether or not the included interventions led to an actual increase in family inclusion within the nursing home.

With the aim to contribute to the development of future interventions to involve family members of people with dementia within the nursing home setting, we had a closer look at the content of included interventions. The citizen participation ladder of Edelenbos & Klijn [23] enables us to broadly map the degree and type of family inclusion within the included interventions. In most included interventions, family members’ role can be classified as ‘informing’ or ‘consulting.’ Interventions in which family members received an information booklet only [33, 57‐59], are examples of ‘informing’ family members. The PIC-SCU [50] program is the only intervention aimed at ‘co-deciding’ between family and staff members. The FIC-program [35, 41, 44] does not convincingly draw towards building a partnership between family and staff members, as it focuses more on family members and how to maximize their contribution within the nursing home. Within the family−staff interaction interventions, family and staff members are often not treated equally, hampering mutual exchange and reciprocity between staff and family members. Especially with regard to education, educational sessions are often solely organized for staff members [33‐35, 41, 43‐45, 59], while family members receive an information booklet only. In the three psychoeducational interventions for family members, a role for staff members is lacking completely [39, 40, 48]. Although an educational component is part of many of the included interventions, the content of education differs across interventions. While a number of interventions pay attention to education regarding family−staff interactions (e.g., how to shape the relationship), other interventions focus more on education about dementia or care-related aspects (e.g., medical decisions at the end of life).

Very few interventions exist that try to enhance an equal partnership between family and staff in nursing homes. Future interventions should pay specific attention to mutual exchange and reciprocity between family and staff members, to enable individual and tailored support for residents that are highly dependent on their social network. As little is known about promising (components of) interventions to foster family inclusion in nursing homes for people with dementia, more effectiveness research is needed.