Advance care planning (ACP) can be described as the process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals and preferences regarding medical care (Sudore et al., 2017). Performing ACP in early stages of any disease potentially increases the likelihood that a patient’s wishes will be incorporated into care decisions, and reduce unwanted hospitalization and intensive treatments at the end of life [Detering et al., 2010; Silveira et al., 2010; for a systematic review on effects of ACP on end-of-life care, see Brinkman-Stoppelenburg et al. (2014)]. ACP has been associated with a range of positive end-of-life outcomes. Although the evidence base is still limited, this could be especially relevant for people with dementia, as they are likely to experience a prolonged period of cognitive decline, starting in early stages of the disease trajectory [for a systematic review on effects of ACP in improving end-of-life outcomes for people with dementia, see Dixon et al. (2018)].

Changes in cognitive abilities caused by dementia may not only impact decision-making capacities, but are also likely to affect the ability to process information and to participate in conversations. Difficulties in understanding a conversational context and expressing feelings may lead to several communication challenges, depending on the dementia condition (Rousseaux et al., 2010; Visser et al., 2020). For people with dementia, a simple chat with family members can be difficult, let alone having conversations with healthcare professionals about ACP. As a result, it is not very common for healthcare professionals to initiate ACP conversations with people with dementia (Azizi et al., 2022), and if any important ACP topics need to be discussed, they gradually turn to a proxy decision maker, like a family caregiver. However, people with dementia should have an active role as long as possible as well, when planning their future care (Van den Block, 2019). Healthcare professionals may adapt their communication strategies in ACP conversations to the cognitive abilities of people with dementia.

So far, research on how to facilitate ACP for people with dementia specifically focuses on defining relevant themes and topics for conversations, or on how to formalize decisions made by surrogates (Ampe et al., 2016; Tilburgs et al., 2018). As Van den Block (2019) describes in her editorial on the current state of research on ACP for people with dementia, much of the existing literature emphasizes on answering questions concerning the “what” of ACP, rather than understanding the “how” of ACP communication. Questions such as “How do we overcome the barriers for ACP conversations with people with dementia?” and “How to tailor communication in order to facilitate ACP conversations with people with dementia?” are still to be answered. A better scope of the existing research on communication aspects related to dementia in ACP conversations is needed to uncover any gaps in research in order to formulate communication strategies for healthcare professionals to improve their ACP practices, impacting the lives of people with dementia and their family members.

The aim of this scoping review is to examine how communication difficulties related to dementia are addressed in the literature (following the explicit scoping review method by Arksey and O’Malley, 2005). This paper serves as a starting point for future research and clinical practice, highlighting the contribution of involving people with dementia in making decisions and plans around their care.

With this scoping review, we mapped existing literature on communication aspects related to dementia in ACP conversations. Seven topics (importance of having ACP conversations, knowledge gap, inclusion of people with dementia in ACP conversations, policy vs. practice, adapting to cognitive changes, adapting to psychosocial changes, and adapting to emotional changes) emerged. Practical suggestions for healthcare professionals to improve ACP communication are provided and summarized in Box 1. This review underlines the scarcity of studies focusing on “how” to talk to a person with dementia about their ACP preferences; more research is needed on non-verbal communicative aspects of ACP conversations, timing and implementation of these conversations, and preferences of individuals with dementia related to these conversations, as results of studies so far have been inconsistent or have not given any or little attention to these topics.

One topic that was mentioned in the literature several times but seems to lack empirical evidence, is how expressive behavior related to dementia may affect the process of an ACP conversation between a patient and a healthcare professional. Research underlines the importance of reading non-verbal behavior for ACP conversation processes and outcomes (Godwin and Waters, 2009; Johnson et al., 2009; Ampe et al., 2016), but how to do so is still to be studied. Numerous studies show changes in expressive abilities of people with dementia [e.g., emotional expressions, review by Lee et al. (2019); expressions of apathy, Kumfor et al., 2018; and mutual eye gaze, Sturm et al., 2011], and may be extra prone to affect behavior in conversations around sensitive topics of ACP.

Another important topic that needs more research is timing and implementation of ACP conversations and practice. Research seems to underline the significance of “early” initiated conversations, and that initiation in care facilities may be too late to include people with dementia (Poppe et al., 2013; Ampe et al., 2016; Sinclair et al., 2016; Aasmul et al., 2018; Tilburgs et al., 2018). More research is needed on how to define the right moment. Several papers suggest healthcare professionals to “have a continuous conversation” with people with dementia about ACP, and to “talk about ACP in an informal way and often.” However, it seems to be difficult to implement such suggestions in practice. Healthcare professionals often feel incapable of initiating conversations on sensitive topics like ACP and tend to avoid these (Beernaert et al., 2014). Future research should have a strong focus on how to implement ACP in practice, rather than only formulating ACP policies. Also, although our findings suggest that ACP conversations are needed on a regular base, and healthcare professionals investing time seems necessary, the ideal duration of an ACP conversation remains unclear (e.g., de Vries and Drury-Ruddlesden, 2019).

Further research is needed on the optimal timing and frequency of conversations, but also on models of care in which healthcare professionals who are best positioned to conduct and personalize ACP, are supported to do so. A review by Piers et al. (2018), describes evidence-based guidelines for healthcare professionals across settings in the practical application of ACP in dementia care. Amongst recommendations on topics such as documentation and end-of-life decisions, limited suggestions are made around communication strategies in ACP conversations that are in line with the recommendations as presented in Box 1(e.g., adjust one’s communication style and content to their own level and rhythm). Still, papers included in this scoping review showed different findings with regard to the importance of familiar healthcare professionals leading ACP conversations, the effect of (lack of) empathy by the healthcare professional, and whether or when an approach should be more or less directive. Preferences for the way an ACP conversation is held may be personal, and can change over time, depending on many factors, such as cultural background or even mental conditions. For example, in some cultures, fostering autonomy of the person with dementia is important, while in other cultures, a paternalistic approach may be useful at times. As this is barely reflected in the studies included in this scoping review, future work needs to focus on personal preferences that demand a level of flexibility of healthcare professionals to adopt different approaches as needed.

This scoping review has several strengths and limitations. Our strength is that we focused specifically on communicative aspects of ACP conversations with people with dementia, uncovering significant gaps in literature and providing recommendations for research and practice. Unfortunately, most studies covered this topic within a broader scope, focusing on ACP practice related to dementia in general, leaving several important factors underexposed. No papers that were included in the scoping review focused on cultural differences as a determinant for how to communicate ACP with people with dementia, limiting the generalizability while also exposing a need for future studies on ACP to include non-Western populations. In fact, all studies included were conducted in Western high-income studies. A reason for this could be we only included papers written in English. Another complicating matter when interpreting results and recommendations of the papers included in the scoping review, was that papers referred to different ACP policies that were custom for specific countries. Legislation and guidelines at national and international level may determine how ACP is approached and is still being developed (Alzheimer Europe, 2020). Still, scoping the literature, we did find a number of practical implications for ACP practice in general, to be adapted by healthcare practitioners and family caregivers, in order to improve ACP practices. Conversations about ACP should be continuous practice, with an active role for people with dementia themselves. Timing, content and form have to be tailored to their cognitive, psychosocial and emotional needs. This study underlines the need for more thorough, empirical studies that look into how to talk to people with dementia about future care.

The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author/s.

MV, HS, JS, and DP: conceptualization. MV and HS: data curation. MV and JS: formal analysis. MV: funding acquisition and writing—original draft. HS, JS, and DP: writing—review and editing. All authors approved the final version to be published and read and agreed to the published version of the manuscript.

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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