A systematic scoping review and synthesis of dementia and communication theory

Abstract

Aim

This review considers the theoretical literature concerning communication between a person with dementia and a person without dementia.

Methods

Theoretical accounts of communication between a person with dementia and a person without dementia were identified through database searches, hand searching of reference lists and contacting experts in the topic area.

Results

Twenty-one articles were included in the final review, yielding 18 different theoretical accounts of communication in the context of dementia. Thematic synthesis showed that four categories could account for the majority of the material described in these theories, even though they were derived from very different perspectives. These categories were mutuality, personhood, anxiety reduction and environmental considerations.

Discussion

The four categories identified in the thematic synthesis were reminiscent of Kitwood’s theory of person-centred dementia care. Different interpretations of this finding are considered. Most theoretical accounts focused on the relational aspects of communication. This meant that societal and individual accounts of communication in the context of dementia were relatively impoverished in terms of theory.

Conclusions

There is widespread agreement regarding the important components of good quality communication in the context of dementia. This suggests exciting opportunities for collaboration between apparently disparate bodies of literature. Individual and societal accounts of communication in the context of dementia are relatively neglected and would benefit from more research.

Keywords

communication dementia theory philosophy of science person-centred care Kitwood

Introduction

Communication difficulties are common in people living with dementia (please see Schrauf & Muller, 2014; Watson, Aizawa, Savundranayagam, & Orange, 2012 for overviews of the topic). These arise from a combination of internal and external factors including the storage and retrieval of information and the ability to deal with the dynamic and complex nature of social interaction (Schrauf & Muller, 2014; Watson et al., 2012). Communication difficulties like these may limit opportunities for autonomy and for interactions for the person with dementia (Davis, 2005; Ekman, Wahlin, Viitanen, Norberg, & Winblad, 1994). This is reflected in the experience of people with dementia who report that their greatest unmet needs are often psychosocial in nature, such as the need for company and daytime activities (Hancock, Woods, Challis, & Orrell, 2006; van der Roest et al., 2009). Qualitative work has shown that communication difficulties are also amongst the most difficult aspects of caring for a family member with dementia (Murray, Schneider, Banerjee, & Mann, 1999), and quantitative work has demonstrated an association between communication and strain on the person caring for someone who has dementia (Papastavrou, Kalokerinou, Papacostas, Tsangari, & Sourtzi, 2007). Interventions which target communication therefore have the potential to improve the quality of life of both the person with dementia and the person(s) who care for them (see e.g. Eggenberger, Heimerl, & Bennett, 2013 for a review of interventions).

Communication is a complex phenomenon which can be understood on multiple levels (Luhmann, 1992). It happens on the individual level in the sense that a person gives off particular signals, either verbal or non-verbal. Another individual must then interpret these signals, and so it may be said that communication involves individuals and relationships. The individuals and the relationship also exist within a context, and so communication also constitutes and is shaped by the environmental, societal, political and historical. Each one of these aspects of communication may (rightly or wrongly) be partitioned, and each represents a way in which communication can be understood. The lens through which communication is viewed in this fundamental sense (i.e. as a neurobiological, linguistic, psychological, societal or political event, etc.) influences how communication is thought about and theoretically framed in a contested paradigmatic arena (Suppes, 1967). Theories arising from different perspectives may be said to be commensurate to the extent that they can establish a common language with which to share ideas (Kuhn, 1962). On the other hand, theories may be incommensurable if they are unable to do so due to irreconcilable ontological and epistemological assumptions.

The current paper outlines the findings from a scoping review (Arksey & O’Malley, 2005; Levac, Colquhoun, & O’Brien, 2010) that examined the theoretical literature on communication between people with dementia and the people without dementia who are around them. Scoping reviews allow an overview of the different theories which have been used to explore a phenomenon and identify areas that warrant further investigation (Arksey & O’Malley, 2005; Booth & Carroll, 2015; Levac et al., 2010). Reviews of this kind also allow researchers to identify points of agreement between separate yet commensurate bodies of knowledge, thus presenting opportunities for multidisciplinary collaboration.

Methods

Research question

For this scoping review, the research question was ‘What theories are available in understanding communication between people with dementia and people without dementia?’ There are four components to this question: ‘theory’, ‘communication’, ‘people with dementia’ and ‘people without dementia’. Following the recommendations of Levac et al. (2010) we sought to define the sub-components of the research question as clearly as we could, given that this had ramifications for the search strategy. Concepts that were deemed to be tangential to the central question such as mathematical theories and non-verbal forms of communication such as written correspondence were excluded from the scoping review. This led to the development of the following definitions:

Theory: models, frameworks or arrangements of concepts identified by the authors in explaining communication.

Communication: the moment-by-moment exchange of thoughts, feelings, needs or other information between two or more people through speaking or non-verbal methods such as sign language, sounds, gestures, movements or expressions.

People with dementia: people who have been diagnosed with probable dementia.¹ This can include any of the many types of dementia, for example Alzheimer’s disease, frontotemporal dementia, Lewy body dementia, and so on.

People without dementia: any person communicating with a person with dementia who does not themselves have a diagnosis of dementia. This could be in a personal or professional capacity. The communication may be for social or practical purposes.

Database identification

Databases were chosen for their breadth and variety of coverage. Medline was chosen for coverage of medical literature. Psychinfo was chosen for its coverage of psychological literature. ERIC was chosen for its coverage of education literature and CINAHL for its coverage of nursing and allied health professional literature such as speech and language therapy. The database search was completed on 24 August 2016 and included all articles published up to this date. We did not specify a lower bound for date of publication.

Development of search terms

Search terms were developed through team discussion of synonyms for the components of the research question. These were then mapped onto the corresponding subject headings for each database. Following Booth and Carroll’s (2015) guidance on the systematic search of theory, the term ‘model*, concept* OR theor*’ was included as a title or abstract search term, so that the search returned only those articles which described a theoretical account. The search terms used can be found in Table 1.

Table 1.

Search terms included in the systematic review. Please note that the specific combinations of terms depended on the subject headings used by each database.

	Communication	Person with dementia	Person without dementia	Theory
Search terms	Communication	Dementia	Caregivers	Model
	Interpersonal communication	Alzheimer’s disease	Carer	Concept
	Interpersonal relations		Family	Theory
	Social behaviour		Family members
	Social interaction
	Relationship
	Patient-centred care

Identifying relevant studies

Screening

Following electronic database search, the titles and abstracts of identified studies were screened. Studies were excluded by the following criteria:

No mention of communication, language or conversation

No mention of dementia or Alzheimer’s disease

No mention of caring professional or family member.

Unfortunately we also had to exclude studies which were not available in English due to translation costs.

b. Full text review

Articles were included if they described an explicit theory, model or framework for understanding communication between a person with dementia and a person without dementia.

This included:

Articles setting out a theory based on existing literature

Articles setting out a theory based on qualitative work/clinical observations

Applications of existing theory to a novel area.

And it excluded:

Theories applied non-specifically to people with dementia (e.g. theories of communication with older people which may include those with dementia but is not specifically applied in this way)

Articles which described communication between more than two people simultaneously

Articles which described the unilateral transmission of information.

c. Hand search

Reference lists of papers retained at this stage (n = 21) were hand searched for studies not identified by the database search. The full text of each paper identified in this way was then reviewed as per the above criteria.

d. Contacting experts

The list of identified papers was circulated to experts in the area of dementia and communication to ask if they knew of other relevant studies which may not have been returned by the database search. Academic experts were selected on the basis that they had more than citation identified in the initial database search and an active email address. We contacted 13 people in this way and received seven responses. The academics who responded had backgrounds in linguistics, psychology, nursing, cognitive science and social work. The full text of every article identified in this way was reviewed according to the criteria set out above.

Data extraction

A table was created to record the relevant data from each retained paper. This included metadata such as study name and country of origin, as well as a description of the theory or model itself. These data are reproduced in Tables 2 and 3 of the ‘Results’ section.

Table 2.

Metadata for the studies included in the final synthesis.

Authors’ names	Background	Article title	Source	Year	Origin
Athlin, E. & Norberg, A.¹	Nursing	Interaction between the severely demented patient and his caregiver during feeding	Scand J Caring Sci	1987	Sweden
Clare, L. & Shakespeare, P.²	Clinical psychology and social anthropology	Negotiating the impact of forgetting	Dementia	2004	UK
Ekman, S. L., Wahlin, T. B. R., Norberg, A., & Winblad, B.³	Nursing	Relationship between bilingual demented immigrants and bilingual/monolingual caregivers	Int J Aging Hum Dev	1993	Sweden
Ekman, S. L., Norberg, A., Wahlin, T. B. R., & Winblad, B.⁴	Nursing	Dimensions and progression in the interaction between bilingual/monolingual caregivers and bilingual demented immigrants	Int J Aging Hum Dev	1995	Sweden
Fels, D. I. & Astell, A. J.⁵	Information technology/clinical psychology	Storytelling as a model of conversation for people with dementia and caregivers	Am J Alzheimer’s Dis & Other Dementias	2011	Canada/Scotland
Haggstrom, T. & Norberg, A.⁶	Nursing	Maternal thinking in dementia care	J Adv Nurs	1996	Sweden
Jost, A., Neumann, E., & Himmelmann, K.-H.⁷	Social psychiatry/media	Synchronized communication between people with dementia and their volunteer caregivers	Curr Alzheimer Res	2010	Germany
Luxmoore, B., & McEvoy, P.⁸	Project management/nursing	Mentalization in dementia care: an autoethnographic account of a project worker's experiences	Working with Older People	2017	UK
Marwit, S., Meuser, T. M., & Bryer, D.E.⁹	Psychology and neurology	Development of an awareness context theory typology for addressing communication patterns in mild dementia	Clin Gerontologist	2005	USA
McEvoy, P., & Plant, R.¹⁰	Nursing	Dementia care: using empathic curiosity to establish the common ground that is necessary for meaningful communication	J Psychiat & Ment Health Nurs	2014	UK
McGovern, J.¹¹	Social work	Couple meaning-making and dementia: Challenges to the deficit model	J Gerontological Soc Work	2011	USA
Orange, J. B., Ryan, E. B., Meredith, S. D., & MacLean, M. J.¹²	Communication studies/social work	Application of the communication enhancement model for long-term care residents with Alzheimer’s disease	Top Lang Disord	1995	Canada
Savundranayagam, M. Y., Dilley, L. J., & Basting, A.¹³	Health studies and theatre	StoryCorps’ memory loss initiative: Enhancing personhood for storytellers with memory loss	Dementia	2011	USA
Seifert, L., Flaherty, K., & Trill, K.¹⁴	Psychology and nursing	Beyond person-centered dementia care: The see saw model for day to day interactions	Activities Directors' Quarterly for Alzheimer's and other dementia patients	2013	USA
Small, J. Y.¹⁵	Child development and family studies	Understanding communication between family caregivers and persons with moderate Alzheimer’s disease	PhD Thesis	2008	USA
Small, J., & Perry, J. A.¹⁶	Audiology and nursing	Training family care partners to communicate effectively with persons with Alzheimer’s disease: The TRACED program	Can J Speech-Lang Pathol & Audiology	2012	Canada
Watson, B., Aizawa, L. D., Savundranayagam, M. Y., & Orange, J. B.¹⁷	Health sciences and communication studies	Links among communication, dementia and caregiver burden	Can J Speech-Lang Pathol & Audiology	2012	Canada
Wong, S. B., Anand, R., Chapman, S. B., Rackley, A., & Zientz, J.¹⁸	Behavioural and brain sciences	When nouns and verbs degrade: facilitating communication in semantic dementia	Aphasiology	2009	USA
Wray, A.¹⁹	Linguistics	Patterns of formulaic language in Alzheimer’s disease: Implications for quality of life	Qual Ageing & Older Adults	2012	UK
Yamaguchi, T., Maki, Y., & Yamaguchi, H.²⁰	Health sciences	Pitfall Intention Explanation Task with Clue Questions (Pitfall task): Assessment of comprehending other people’s behavioral intentions in Alzheimer’s disease	Int Psycho-geriatrics	2012	Japan
Young, T. J., Manthorp, C., Howells, D., & Tullo, E.²¹	Language and communication	Developing a carer communication intervention to support personhood and quality of life in dementia	Ageing Soc	2011	UK

Studies are listed alphabetically by first author surname. The ‘background’ column refers to the university departments affiliated with the author(s). The superscript numbers correspond to the theories described in Table 3.

Table 3.

Theories identified from the 21 articles included in the review.

Theory name	Perspective	Brief description	Themes
Sending and responding to cues¹	Medical discourse	Dementia can negatively affect a person’s ability to send and respond to communicative cues. Those who care for someone with dementia can help through responsiveness to subtle cues and increased clarity of their own cues.	Knowing the person
			Knowing one’s own strengths and weaknesses
			Respect, equality, interdependence
			Sensitivity to patient cues
			Clarity of one’s own cues
Resistance²	Social constructionist	Dominant societal discourses limit the positions available to the person with dementia and to their caregiver. Each person may resist these positions in ways which ultimately serve to maintain the dominant discourse.	Societal discourse
			Power and dispower
			Conversational aims
Eight stages of man^3,4	Psychoanalytic/hermeneutic phenomenology	Human development is construed as a series of crises to be resolved. The person with dementia must resolve all crises at this later stage of their lives. Communication is seen as the process by which the caregiver can help the person with dementia to resolve each crisis.	Crisis resolution
			Respect and trust
			Autonomy
			Identity
Storytelling/personal narratives⁵	Sociolinguistic	Relating personal narratives is an important part of social interaction which people with dementia can meaningfully use. The caregiver can facilitate the use of personal narratives through active listening.	Personal narratives
			Ownership and control
			Audience contribution
Maternal thinking⁶	Developmental psychology/psychoanalysis	Good quality caregiving relies on the accurate attunement of the caregiver to the emotional states of the person with dementia. Emotional attunement leads to a shared understanding of each other’s internal states.	Emotional attunement
			Security and trust
			Warmth and love
			Recognising and maintaining identity
			Importance of the immediate environment
Synchronisation⁷	Developmental psychology/information processing	Communication difficulties may partly be explained by problems with the temporal sequencing of information processing in the person with dementia. This can be ameliorated if the caregiver is able to tune in to the temporal sequencing of the person with dementia.	Temporal attunement
			Mutuality
			Supporting continuity of tasks and actions
Mentalisation⁸	Psychoanalytic	Considering the motivations and other internal states of the person with dementia can help to empathise with them and supports compassion.	Mentalising
Mentalisation⁸	Psychoanalytic		Empathy and compassion
Awareness context theory⁹	Constructivist	Communication is aided by each person in the relationship having an awareness of the dementia diagnosis and a willingness to be open about that knowledge.	Shared knowledge
Awareness context theory⁹	Constructivist		Honesty and openness
Empathic curiosity¹⁰	Perceptual control theory/applied linguistics	Empathic curiosity creates a conversational space in which experiences can be shared and can help the caregiver to think of the motivations behind another’s actions.	Emotional attunement
			Mentalising
			Mutuality and trust
			Pacing and control
Couplehood¹¹	Relational/strengths-based	Spousal couples co-construct their shared identity as a couple (‘we’). The shared identity is able to maintain the subjective self of the person with dementia.	Shared identity
Couplehood¹¹	Relational/strengths-based		Relational growth – open awareness and accommodation of changing skills
Communication enhancement model (CEM)^12,13,16,17	Ecological/health promotion	Communication difficulties result from a mismatch between the abilities and motivations of a person with dementia and the expectations (e.g. stereotypes) and opportunities in the environment. Caregivers can aid communication by providing more opportunities and by understanding more about the individual person with dementia to counteract their assumptions.	Knowing personal history of person with dementia
			Attempting to understand communicative intentions
			Personalising the environment
			Use of soothing verbal and non-verbal cues
CEM/Personhood^13,16	Relational	Social partners convey comfort and a sense of belonging; they uphold the occupation and identity of the person with dementia by involving them in conversation and meaningful activity	Shared enjoyment and experiences
			Reaffirming selfhood
			Reaffirming relationships
See-saw model¹⁴	Relational/faith-based	Communication is conceptualised as a see-saw – the back and forth is kept going by a continuous connection between caregiver and the person with dementia. This is fostered through open lines of communication and factors like personal caring.	Knowing the person
			Knowing oneself
			Humanity
			Justice
Propositional grounding¹⁵	Linguistic	Conversation relies on the mutual knowledge, beliefs and assumptions about the social and physical environment. This common ground is updated through the utterances of each conversational partner. People with dementia are thought to contribute fewer utterances which elaborate or maintain the common ground.	Shared knowledge
Communicative effectiveness framework¹⁸	Linguistic	Symptoms of dementia limit the codification of ideas, and this in turn limits the communicative functions that can be achieved by the person with dementia. Teaching a person to use methods other than words to codify meaning may help to increase the functions available to them.	Codification of ideas
Communicative effectiveness framework¹⁸	Linguistic		Functions of language
The downward spiral¹⁹	Linguistic	Formulaic language is used more often by people with dementia. This can leave the caregiver feeling despondent and mean that they themselves use more formulaic language. This limits the scope for further interaction.	Respect and autonomy
The downward spiral¹⁹	Linguistic		Misinterpretation of meaning
Contextual understanding/theory of mind²⁰	Social cognitive	People with dementia may have difficulties with social cognition, especially understanding another’s beliefs and intentions. This may cause problems with communication.	Theory of mind/assessing intentions
Communicative predicament of ageing model^17,21	Linguistic/social psychological	Stereotypes about older people mean that caregivers use patronising and inappropriate language. This leads to disengagement and disempowerment of the person with dementia.	Acknowledgement and inclusion
			Environmental considerations
			Anxiety reduction
			Empathy

The superscript numbers in the first column correspond to the superscript numbers found in Table 2. The “Perspective” column represents the perspective identified by the authors of each article. They are not directly comparable because authors did not necessarily identify with perspectives which are aspects of the same dimension. The decision was taken not to abstract these to a level on which they could be compared as this would involve some interpretation of the meaning that each author ascribed to the perspective with which they identified. This meaning could be highly idiosyncratic (e.g. the meaning of being ‘Relational’ or ‘Psychoanalytic’), and so to abstract from these interpretations could easily lead to misrepresentation of the authors’ views.

Thematic synthesis

Our approach to synthesising the theories identified in our review was informed by Pound and Campbell’s (2015) guidance on the synthesis of theory. To begin with, the theories were succinctly summarised with a brief narrative description. Themes were then identified from the theories. This was an attempt to succinctly represent the main concepts of each theory. In many cases this was aided by the authors themselves who often summarised the key components of their theory; e.g. ‘The main concepts of the model are clarity of cues, sensitivity, interpretation, responsiveness and synchrony’ (Athlin & Norberg, 1987, p. 1). If the main concepts were not explicitly stated by the authors, themes were derived from the narrative description of the theory. These themes were recorded in a table and then categorised according to their similarity. These categories were assigned a label which characterised all the themes within that category. The two largest categories were recorded in diagrams whilst the other categories were recorded in a table. These can be found in Figures 2 and 3 and Table 4 of the ‘Results’ section.

Table 4.

Other categories arising from the synthesis of themes.

Category	Theme	Sources
Anxiety reduction	Crisis resolution	3, 4
	Trust	3, 4, 6, 10
	Soothing verbal and non-verbal acts	12, 13, 16, 21
	Warmth and love	6
Environmental considerations	Importance of the immediate environment	6, 21
	Personalising the environment	12, 13, 16
Societal considerations	Societal discourse	2
	Power and dispower	2
The couple as a unit	Relational growth	11
Individualised accounts	Codification of ideas	18
	Functions of language	18

The numbers listed in the final column correspond to the superscript numbers in Tables 2 and 3.

Team debriefing

The lead author (LE) read the articles included in this review in totality. He was supported by the other authors via a series of team meetings held throughout the study. These meetings involved the discussion of interpretations, clarification of meanings and tracing interpretations back to the original texts. This process helped to identify the biases of the lead analyst (see ‘Reflexivity’ section) and also to ensure the coherence of interpretations.

Results

Reliability analysis

A second researcher was asked to screen 25% (166) of the studies identified by the database search in order to assess reliability of the screening criteria. Cohen’s kappa was calculated as .71 indicating adequate reliability.

Retained studies

Please see Figure 1 for a flow chart of identified studies for inclusion in this review. In total 706 studies were considered for inclusion. Twenty-one studies met the criteria for inclusion in the final synthesis. Table 2 describes the metadata for each of the included studies.

Figure 1.

Flow chart for studies identified in this review.

Eighteen theories were derived from the 21 included studies. Information about the theories described in these papers can be found in Table 3.

Thematic synthesis

The largest category which emerged from the synthesis was labelled mutuality. Mutuality signifies the understanding shared by two people. Themes relating to mutuality were identified in sixteen of the articles included in the synthesis. Mutuality consisted of three subcategories: temporal attunement, cognitive attunement and emotional attunement. These subcategories and the means by which they might be achieved are presented in Figure 2.

Figure 2.

Themes comprising the category of mutuality. Circles represent abstract concepts and rectangles represent the means by which these concepts might be achieved. The numbers in the diagram correspond to the superscript numbers in Tables 2 and 3.

The ways in which mutuality may be achieved have not been separated according to emotional, temporal or cognitive attunement because each process or behaviour may rely on all three aspects simultaneously. For example, shared enjoyment implies some synchrony between conversational partners in each of the emotional, temporal and cognitive subcategories.

The next largest category was labelled personhood. Themes relating to personhood were identified in twelve of the 21 articles included in the review. A diagram of the themes relating to personhood can be found in Figure 3.

Figure 3.

Themes comprising the category of personhood. Circles in the diagram represent abstract concepts and rectangles represent the means by which these concepts might be achieved. The numbers in the diagram correspond to the superscript numbers in Tables 2 and 3.

Personhood was comprised of three subcategories. These were autonomy, identity and respect. Autonomy refers to the ability to initiate actions oneself, including conversation. Identity refers to the things which other people come to associate with being a particular person, such as maintaining hobbies and interests. Respect refers to the regard shown towards a valued person.

Five other categories also emerged from the synthesis of themes. These are presented in Table 4.

The largest of the other categories was anxiety reduction. Eight articles mentioned themes relating to this category. Themes relating to environmental considerations were mentioned in five articles. The three other categories were each mentioned by only one article.

Discussion

Summary

The current paper provides a systematic scoping review of theories of communication between a person with dementia and a person without dementia. The review identified 21 studies which met the inclusion criteria. Eighteen different theories were derived from these studies.

Thematic synthesis suggested that the four largest categories could account for the majority of themes derived from the included theories. These categories were mutuality, personhood, anxiety reduction and environmental considerations. These categories were often shared between theories, even though the theories originated from diverse perspectives such as social constructivism, linguistics and psychoanalytic theory.

Reflexivity

Given that the synthesis of the papers included in this review required some interpretation of the literature, some reflection on the position of the lead autor (LE) is necessary prior to discussing the results in detail. We hope this will allow the reader to contextualise the findings so they are able to make their own inferences as to their validity.

LE is a trainee clinical psychologist whose practice is mainly derived from the humanist perspective. His clinical work emphasises non-judgement, empathy and curiosity. The research presented here was completed as part of the requirements of his training. It has been written alongside a piece of research investigating the lived experience of communicating with a loved one who is living with dementia .

Study implications

a. Similarity with definitions of care

The four largest categories of themes we identified in this study were mutuality, personhood, anxiety reduction and environmental considerations. The most striking thing to note about these categories in context is their similarity to the concepts described in Kitwood’s theory of person-centred dementia care (Kitwood, 1993, 1998; Kitwood & Bredin, 1992).

Personhood and mutuality were central themes in Kitwood’s work. He believed that personhood was created in an infant through intersubjectivity/mutuality with their caregiver (Kitwood, 1993). This involved the caregiver responding appropriately to the cues of the infant, thus communicating to the infant that they were agentic in the world (Kitwood, 1993). Anxiety was also an important theme in Kitwood’s theory. Kitwood believed that infants lacked sophisticated psychological defences and were thus prone to anxiety. As a result, their emotions must be ‘held’ by external caregivers in intersubjective states (Kitwood, 1993). Kitwood (1993) also noted that care environments could be more or less facilitative of personhood-enhancing interactions. Kitwood transposed these ideas – taken from psychoanalytic developmental psychology – onto the care of people with dementia. Hence, positive environments were thought to facilitate mutual interactions which had the dual function of fostering personhood and offsetting the anxiety experienced due to reduced defences.

Clearly, there are very strong similarities between Kitwood’s ideas and the categories we identified. This implies that the same kinds of themes are identified with communication as with care. Perhaps this suggests a rather artificial distinction between the two concepts or their inherent symbiosis: good communication can be a caring process and caring itself communicates. On the other hand, this may reflect the vast influence of Kitwood’s work in the field of dementia care. This is considered in more detail below.

b. Similarities between theories

In addition to their apparent similarity with definitions of care, the theories we included in this review often shared similarities with each other. This was despite coming from a range of distinct professional and theoretical bases. This finding could be interpreted in a number of ways.

(I) Structural/realist explanation

One explanation is that the categories identified represent some underlying structure or truth which each theory describes with more or less success. The large degree of commensurability between the theories would by this account suggest a fairly good correspondence between the theory and the way the world actually is (i.e. the ‘truth’). It is possible that some of these theories access the truth at different levels. Some may describe the ‘what’ (e.g. the ‘maternal thinking’ recommended by Haggstrom and Norberg (1996)) whereas others describe the ‘how’ (such as Luxmoore & McEvoy’s description of mentalisation, 2017). Some may even begin to broach the ‘why’ (e.g. Seifert, Flaherty, & Trill, 2013).

A pluralist account such as this is antireductionist in nature. As such it is comparable with other antireductionist positions such as Velmans’ reflexive monism (in the sense that good communication may consist of complementary and mutually irreducible components; Velmans, 2008) and the multiple realisations accounts of Putnam and Fodor (in the sense that the same experience may be brought about through different routes; Fodor, 1974; Putnam, 1967).

Given the multifaceted nature of communication, it is likely that multifaceted interventions will have the greatest impact. Some evidence already attests to this: in their systematic review of communication interventions, Eggenberger et al. (2013) noted that educational interventions were improved when combined with other components. The general agreement between theories of communication identified in our research suggests exciting opportunities for collaboration in the development of complex interventions for communication in the context of dementia. It might be possible to integrate theories in order to produce interventions which address different aspects of communication. For example, complete interventions may consist of diverse modules including personal reflection, perspective taking, anxiety reduction techniques, and so on. Some may even consider incorporating political or spiritual elements.

(II) Societal explanation

It is possible that our findings demonstrate a societal trend to look for certain things, and indeed some tacit ontological agreement. Theorists may feel as though they are investigating the world through their own lens, yet a much more powerful lens is in common with other researchers. Researchers come up with similar ideas because these ideas are all that we have access to at this particular time. In effect, our findings are signalling a contemporaneous zeitgeist. This view is consistent with the work of Thomas Kuhn (1962) and would indicate a period of ‘normal science’; currently, it seems as though few credible alternatives to the current paradigm exist.

Assuming this perspective, and in light of the similarities with Kitwood’s work, one might infer that the current paradigm in dementia care research is one of ‘person-centred care’. The widespread adoption of this paradigm has interesting implications for the field. One of the obvious implications is the relative neglect of individual and societal perspectives (see below). The adoption of the person-centred care paradigm also gives primacy to anxiety at the expense of other emotions such as sadness and anger. This may reflect the psychoanalytic interests of Kitwood himself, as anxiety is so central in much psychoanalytic psychology (e.g. Freud, 1926/1977). This is an interesting point to consider, because it implies that theories which do not identify with psychoanalysis at all may in fact trace their roots back to the discipline.

(III) Bias

The results that we present here might be an example of bias on our part. Of course, some bias is inevitable in all research and we can only aim to declare this so that the reader is able to judge the validity of our findings themselves. We do hope that our transparency regarding the lead researcher’s position and study methods inspires confidence in our findings. Nevertheless, it would be irresponsible for us to ignore this potentially less interesting explanation of our results.

c. Theories situated outside the prevailing discourse

One of the fascinating findings of this research is the situation of two theories more or less entirely outside of the four largest categories. Clare and Shakespeare’s (2004) social constructionist theory of resistance gives primacy to the concepts of power and societal discourse. These are societal-level explanations of interpersonal communication. On the opposite end of the spectrum is Wong et al.’s (2009) theory which they term the communicative effectiveness framework. This theory provides a mostly individualised account of interpersonal communication.

These theories seem to fit neither with each other, nor with the prevailing theoretical discourse. This perhaps suggests that the current epoch is one in which researchers are most accepting of an explanation of communication in terms of the two communicative actors present during the interaction. Neither a narrower focus such as Wong et al.’s (2009) nor a broader focus such as Clare and Shakespeare’s (2004) seems particularly popular. Again, a realist perspective would suggest that this indicates some truth as to the interpretation of communication as an interpersonal (as opposed to individual or societal) process. On the other hand, it may suggest nothing more than that this interpretation is currently in vogue.

Whichever position is adopted, our review shows that societal- and individual-level theories of communication are presently scant. The lack of theory in these areas will limit the availability of evidence-based interventions at each of these levels. This is reflected in two systematic reviews of communication interventions, both of which only identified interventions which were focused on communication at the interpersonal rather than the individual or societal level (Eggenberger et al., 2013; Vasse, Vernooij-Dassen, Spijker, Rikkert, & Koopmans, 2010). Without viable theory, there can be little understanding of the mechanisms upon which interventions are based (Booth & Carroll, 2015; Craig et al., 2008).

Limitations

This study cannot offer anything in the way of prevalence, utility or evidence for each of the theories here identified. We can simply say that they exist. This means that the applied utility of these findings, e.g. for healthcare commissioners or clinicians, may be limited. Our findings may be of greater interest to researchers attempting to understand dementia and communication. Perhaps the results presented here say something more generally about the nature of theory in this area and present directions for future research and collaboration.

The intention of this study was to identify theories of communication in a specific context. This may have meant the exclusion of some more general theories of communication which could be relevant, but which have not been directly applied to people with dementia. In connection with this point is the implication in our research question that communicating with a person with dementia is likely to be different to communicating with a person who does not have dementia. Although many of the studies identified in this review attest to the communicative changes that dementia brings about, certain others (notably Clare & Shakespeare, 2004) might suggest that studies such as ours construct or partially construct the differences we seek to understand. It is possible then that the phenomenon itself may be a partial product of the tools with which we investigate.

Given the systematic nature of this investigation, bodies of knowledge which fall outside of the scientific or quasi-scientific domain were excluded. A more complete study could include anthropologists, historians and theologians on the research team whose expertise could enrich the findings along other dimensions.

Finally, the synthesis of the theories included in this review involved a certain amount of interpretation. It is possible that our interpretations will differ from those of other researchers, and we recognise that our review will have been biased by the terms of reference and search strategy we employed. Having said that, theory synthesis is an interpretive endeavour (Pound & Campbell, 2015), and thus non-agreement between researchers would not necessarily discredit either synthesis (and by extension, agreement would not necessarily strengthen the synthesis either).

Future directions

Given the apparent similarities between theories which are purportedly distinct, researchers in the area of dementia and communication may find it beneficial to work together. Clearly there are pockets of knowledge distributed throughout a number of different professions and schools. It would certainly seem more efficient to collaborate in the pursuit of understanding, rather than to each pursue the same goal separately – especially considering that the destination often seems to end up the same. This could also help to enrich existing interventions along other dimensions with a view to increasing their effectiveness.

Next, our review has shown that there are relatively few individual- and societal-level theories of communication. More work must be done to populate these areas in order to develop corresponding interventions based on well-evidenced theoretical principles. Without the development of such theory, interventions that focus on the individual or society are likely to be based on poorly evidenced mechanisms or neglected entirely. Individual and societal components to multilayered interventions are also likely to be lacking without the development of such theory.

Finally, in entertaining the societal explanation for our findings, it would be very interesting to discover cross-cultural interpretations of communication and care in the context of dementia. Notions of personhood, for example, might conceivably be embedded in the high value placed on individuality in countries like the UK and USA. This kind of research would be valuable in assessing the universality of concepts such as personhood and mutuality, as well as potentially indicating new avenues for communication and care research in the context of dementia.

Final conclusions

The research we have presented here suggests that theories of communication in the context of dementia share many points of agreement, even though they originate from different perspectives. This presents opportunities for collaboration in the development of multicomponent interventions. Most current theory focuses on communication as an interpersonal process. Societal- and individual-level explanations are currently relatively impoverished in terms of theory and may therefore benefit from further investigation into the basic mechanisms which underlie this complex phenomenon.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Note

Liam Ennis is a clinical psychologist. He works in inpatient mental health settings in the NHS in the UK. He has completed qualitative and numerical research across topics such as end-of-life care, service user involvement and e-health. His clinical interests include working with staff teams, group working and single session interventions. He has a particular interest in practice-based evidence and service user co-production.

Warren Mansell is a reader in Clinical Psychology at University of Manchester. He specialises in a universal biopsychosocial approach to mental health and well-being based on perceptual control theory. A core feature of this work is to establish client-led perspectives on services, interventions and communication.

Phil McEvoy is the managing director of Six Degrees Social Enterprise, a Community Interest Company that is committed to helping people with mental health problems deal with the challenges they face. His main research interests are the application of control theory, improving access to mental health care and the development of relationally centred approaches to dementia care.

Sara Tai is a senior lecturer at the University of Manchester and a practicing Consultant Clinical Psychologist. She has extensive clinical and research experience of working internationally in multicultural inner city areas and in training clinicians in psychological interventions. Her research focuses on the science and practice of psychological treatments using both clinical trials and qualitative research methodologies. She specialises in developing transdiagnostic approaches to personalised care for a broad range of service users.

References

Arksey

O’Malley

(2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. DOI: 10.1080/1364557032000119616.

Athlin

Norberg

(1987). Interaction between the severely demented patient and his caregiver during feeding. A theoretical model. Scandinavian Journal of Caring Sciences, 1(3–4), 117–123.

Booth

Carroll

(2015). Systematic searching for theory to inform systematic reviews: Is it feasible? Is it desirable? Health Information & Libraries Journal, 32(3), 220–235. DOI: 10.1111/hir.12108.

Clare

Shakespeare

(2004). Negotiating the impact of forgetting: Dimensions of resistance in task-oriented conversations between people with early-stage dementia and their partners. Dementia, 3(2), 211–232.

Craig

Dieppe

Macintyre

Michie

Nazareth

Petticrew

(2008). Developing and evaluating complex interventions: The new Medical Research Council guidance. British Medical Journal, 337, a1655.

Davis

B. H

(Ed.). (2005). Alzheimer talk, text and context: Enhancing communication. Basingstoke, UK: Palgrave Macmillan.

Eggenberger

Heimerl

Bennett

M. I.

(2013). Communication skills training in dementia care: A systematic review of effectiveness, training content, and didactic methods in different care settings. International Psychogeriatrics, 25(3), 345–358.

Ekman

S. L.

Norberg

Wahlin

T. B.

Winblad

(1995). Dimensions and progression in the interaction between bilingual/monolingual caregivers and bilingual demented immigrants: Analysis of video-recorded morning care sessions in institutions coded by means of the Erikson theory of “eight stages of man”. International Journal of Aging & Human Development, 41(1), 29–45.

Ekman

S. L.

Wahlin

T. B.

Norberg

Winblad

(1993). Relationship between bilingual demented immigrants and bilingual/monolingual caregivers. International Journal of Aging & Human Development, 37(1), 37–54.

10.

Ekman

S. L.

Wahlin

T. B.

Viitanen

Norberg

Winblad

(1994). Preconditions for communication in the care of bilingual demented persons. International Psychogeriatrics, 6(1), 105–120.

11.

Fels

D. I.

Astell

A. J.

(2011). Storytelling as a model of conversation for people with dementia and caregivers. American Journal of Alzheimer’s Disease and Other Dementias, 26(7), 535–541.

12.

Fodor

J. A.

(1974). Special sciences (or: The disunity of science as a working hypothesis). Synthese, 28(2), 97–115.

13.

Freud

(1926/1977). Inhibitions, symptoms and anxiety. New York, NY: WW Norton & Company.

14.

Haggstrom

Norberg

(1996). Maternal thinking in dementia care. Journal of Advanced Nursing, 24(3), 431–438.

15.

Hancock

Woods

Challis

Orrell

(2006). The needs of older people with dementia in residential care. International Journal of Geriatric Psychiatry, 21(1), 43–49.

16.

Jost

Neumann

Himmelmann

K.-H.

(2010). Synchronized communication between people with dementia and their volunteer caregivers. A video-based explorative study on temporal aspects of interaction and the transfer to education. Current Alzheimer Research, 7(5), 439–444.

17.

Kitwood

(1993). Towards a theory of dementia care: The interpersonal process. Ageing and Society, 13(1), 51–67. DOI: 10.1017/S0144686X00000647.

18.

Kitwood

(1998). Toward a theory of dementia care: Ethics and interaction. The Journal of Clinical Ethics, 9(1), 23–34.

19.

Kitwood

Bredin

(1992). Towards a theory of dementia care: Personhood and well-being. Ageing and Society, 12(3), 269–287.

20.

Kuhn

T. S.

(1962). The structure of scientific revolutions. London, UK: University of Chicago Press.

21.

Levac

Colquhoun

O’Brien

K. K.

(2010). Scoping studies: Advancing the methodology. Implementation Science, 5(1), 69. DOI: 10.1186/1748-5908-5-69.

22.

Luhmann

(1992). What is communication? Communication Theory, 2(3), 251–259. DOI: 10.1111/j.1468-2885.1992.tb00042.x.

23.

Luxmoore

McEvoy

(2017). Mentalization in dementia care: an autoethnographic account of a project worker's experiences. Working with Older People, 21(3), 147-156.

24.

Marwit

S. J.

Meuser

T. M.

Bryer

(2005). Development of an awareness context theory typology for addressing communication patterns in mild dementia. Clinical Gerontologist, 28(4), 61–80.

25.

McEvoy

Plant

(2014). Dementia care: Using empathic curiosity to establish the common ground that is necessary for meaningful communication. Journal of Psychiatric and Mental Health Nursing, 21(6), 477–482.

26.

McGovern

(2011). Couple meaning-making and dementia: Challenges to the deficit model. Journal of Gerontological Social Work, 54(7), 678–690.

27.

Murray

Schneider

Banerjee

Mann

(1999). EUROCARE: A cross-national study of co-resident spouse carers for people with Alzheimer’s disease: II – A qualitative analysis of the experience of caregiving. International Journal of Geriatric Psychiatry, 14(8), 662–667.

28.

Orange

J. B.

Ryan

E. B.

Meredith

S. D.

MacLean

M. J.

(1995). Application of the communication enhancement model for long-term care residents with Alzheimer’s disease. Topics in Language Disorders, 15(2), 20–35.

29.

Papastavrou

Kalokerinou

Papacostas

S. S.

Tsangari

Sourtzi

(2007). Caring for a relative with dementia: Family caregiver burden. Journal of Advanced Nursing, 58(5), 446–457. DOI: 10.1111/j.1365-2648.2007.04250.x.

30.

Pound

Campbell

(2015). Exploring the feasibility of theory synthesis: A worked example in the field of health related risk-taking. Social Science & Medicine, 124, 57–65.

31.

Putnam

(1967). Psychological predicates. Art, Mind, and Religion, 1, 37–48.

32.

Savundranayagam

M. Y.

Dilley

L. J.

Basting

(2011). StoryCorps’ memory loss initiative: Enhancing personhood for storytellers with memory loss. Dementia, 10(3), 415–433. DOI: 10.1177/1471301211408123.

33.

Schrauf

R. W.

Muller

(Eds.). (2014). Dialogue and dementia: Cognitive and communicative resources for engagement. New York, NY: Psychology Press.

34.

Seifert

L. S.

Flaherty

Trill

(2013). Beyond person-centered dementia care: The see-saw model for day-to- day interactions. Activities Directors’ Quarterly for Alzheimer's & Other Dementia Patients, 14(2), 15–31.

35.

Small

Perry

J. A.

(2012). Training family care partners to communicate effectively with persons with Alzheimer’s disease: The TRACED program. Canadian Journal of Speech-Language Pathology and Audiology, 36(4), 332–350.

36.

Small

J. Y.

(2008). Understanding communication between family caregivers and persons with moderate Alzheimer’s disease. Dissertation Abstracts International: Section B: The Sciences and Engineering. ProQuest Information & Learning.

37.

Suppes

(1967). What is a scientific theory? In Morgenbesser

(Ed.), Philosophy of science today. (pp. 55–67). New York, NY: Basic Books.

38.

van der Roest

H. G.

Meiland

F. J. M.

Comijs

H. C.

Derksen

Jansen

A. P. D.

van Hout

H. P. J.

Dröes

R.-M.

(2009). What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. International Psychogeriatrics, 21(5), 949–965. DOI: 10.1017/S1041610209990147.

39.

Vasse

Vernooij-Dassen

Spijker

Rikkert

M. O.

Koopmans

(2010). A systematic review of communication strategies for people with dementia in residential and nursing homes. International Psychogeriatrics, 22(2), 189–200.

40.

Velmans

(2008). Reflexive monism. Journal of Consciousness Studies, 15(2), 5–50.

41.

Watson

Aizawa

L. D.

Savundranayagam

M. Y.

Orange

J. B.

(2012). Links among communication, dementia and caregiver burden. Canadian Journal of Speech-Language Pathology and Audiology, 36(4), 276–284.

42.

Wong

S. B.

Anand

Chapman

S. B.

Rackley

Zientz

(2009). When nouns and verbs degrade: Facilitating communication in semantic dementia. Aphasiology, 23(2), 286–301.

43.

Wray

(2012). Patterns of formulaic language in Alzheimer’s disease: Implications for quality of life. Quality in Ageing & Older Adults, 13(3), 168–175. DOI: 10.1108/14717791211264034.

44.

Yamaguchi

Maki

Yamaguchi

(2012). Pitfall intention explanation task with clue questions (pitfall task): Assessment of comprehending other people’s behavioral intentions in Alzheimer’s disease. International Psychogeriatrics, 24(12), 1919–1926.

45.

Young

T. J.

Manthorp

Howells

Tullo

(2011). Developing a carer communication intervention to support personhood and quality of life in dementia. Ageing & Society, 31, 1003–1025.