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04 COMMUNICATION AND COLLABORATION

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IN DEMENTIA
Anna Ekström, Camilla Lindholm, Ali Reza Majlesi
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09 and Christina Samuelsson

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Introduction
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Communication is one of the areas in which people with dementia and their
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conversational partners (including family caregivers or formal staff in care homes)
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experience the most challenges (Murphy et al., 2010; Saunders et al., 2012). It
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has repeatedly been shown that the ability to initiate and maintain interactions
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with other people declines as dementia progresses (e.g. Evans et al., 2007;
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Örulv & Nikku, 2007). As the ability to communicate is crucial for creating and
21
maintaining social relations, a dementia disease increases the risk of social exclu-
22
sion (Kitwood, 1997; Örulv & Hydén, 2006; Sabat, 2002). In interview studies,
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people living with dementia often describe the difficulties they have both initiat-
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ing and maintaining social interactions and how they experience diminished
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social relationships (Ericsson et al., 2011; Saunders et al., 2012). This, in turn, may
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also contribute to a decreased quality of life for people with dementia (Saunders
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et al., 2012). Moreover, deteriorating communication not only affects a person’s
28
social relations but also increases stress and is associated with higher risk of mor-
29
tality for people with dementia (Dunn et al., 1994; Schulz & O’Brien, 1994;
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Williamson & Schulz, 1993; Wright, 1993). As a person’s communicative abilities
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decline, it becomes increasingly difficult to guarantee that the person’s views are
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heard (Murphy et al., 2010).
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However, even if some competences in cognitive and communicative
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domains become limited over time, people with dementia do not lose their
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entire functional capacity, and some cognitive and communicative domains
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may remain intact across the spectrum of dementia (see e.g. Clare, 2008).
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The commonly portrayed picture of people with dementia as uninvolved com-
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municative partners is, in our perspective, both misleading and unfortunate. At
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times, communication with people with dementia may be characterised as
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atypical, but being observant in the ways of communication, people with
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dementia may also prove to be competent collaborative partners in various
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activities. In fact, collaboration in communication would pave the way for
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 94 LIVING WITH DEMENTIA

44 people with dementia to use their current competencies to communicate with

45 others and to remain active in interactional situations.
46 In this chapter, we make use of two separate but interrelated approaches
47 to describe and understand communication involving people with dementia:
48 a dialogic perspective (Linell, 2009) and an emergent pragmatic approach
49 (Perkins, 2007). Using these perspectives, we uphold that human communica-
50 tion is an inherently collaborative activity and constructed through the mutual
51 engagement and cooperation of the interacting participants. By using exam-
52 ples of communication in everyday and institutional activities, we argue for
53 the significance of an integrated approach to the use of verbal and nonverbal
54 communicative resources (talk, gesture, tools, artefacts, etc.) in communica-
55 tion with people with dementia. The chapter details how collaboration may
56 provide grounds for mutual understanding in communication, leading toward
57 increasing engagement of people with dementia in actively cooperating and
58 sharing responsibilities in interaction to accomplish different communicative
59 activities.
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Dementia and communication
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Of all of the domains affected by dementia diseases, communication has been
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argued to be the most substantially impacted area (Alm et al., 2004; Azuma &
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Bayles, 1997). In dementia, communicative ability gradually deteriorates over
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time, typically causing a dramatic diminishment of communicative skills in the
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late stage. A significant characteristic of communication in dementia is semantic
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impairment (Guendouzi & Müller, 2006), while both syntactic and phonologi-
70
cal processes usually remain fairly intact, at least in an early to mid stage of the
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disease (Perkins et al., 1998). In initial stages of dementia, specific linguistic
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symptoms, such as word-finding difficulties, may occur, but as the disease pro-
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gresses the communicative problems increase, and the person with dementia
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may encounter difficulties in participating in conversations. Further, language
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comprehension may also be impaired (e.g. Bayles & Tomoeda, 2007). Com-
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munication might also be complicated by additional impairment in nonverbal
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skills in the later stages of the disease, for example by the decreased use of
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gesture and poor eye contact (Maxim & Bryan, 2006, p. 79).
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Communication in dementia is often characterized by deficiency in both
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language processing and other cognitive functions supporting communication.
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Impaired executive functions may cause repetitive and stereotyped language
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(i.e. tendency to have ritualized behaviour or to repeat sentences, stories, jokes
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and gestures), which has been shown to be common for people with dementia
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(Bayles et al., 1985; Perkins, 2007). Working memory problems have also been
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demonstrated to be the source of referential deficits (e.g. in the form of
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 Communication and collaboration in dementia 95

87 excessive pronoun usage), rather than a problem with lexical semantics (Almor
88 et al., 1999). All in all, it seems that a combination of problems with memory
89 and executive functions underlies the poor word recall in dementia, particularly
90 in Alzheimer’s disease (AD) (Azuma & Bayles, 1997).
91 Hydén (in press) puts forward a number of problems related to communica-
92 tion and dementia identified from studies of both conversations and storytell-
93 ing. As described by Hydén, people with dementia:
94

95 LL with a beginning in the early stage of dementia, have difficulties finding

96 words, use unexpected and seemingly irrelevant words or neologisms or
97 pronounce words in an unusual way
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LL have increasing difficulties to identify references to past events, persons or
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places
100

101 LL have difficulties managing discourse topics and will as a result make sudden
102 topical shifts without advance warning to the listener about the upcoming
103 shift or giving an account for introducing a new topic
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LL often repeat things already said or re-describe events or stories already
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reported.
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It is, however, important to remember that deficiencies will vary between indi-
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viduals, and different problems interact with each other and form a specific
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communicative profile for each individual diagnosed with dementia. As pointed
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out by Perkins et al. (1998), even though particular combinations of problems
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have been associated with different forms of dementia, ‘there is a vast amount
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of individual variability within diagnostic categories that is potentially obscured
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by presentation of group data’ (p. 36).
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Pragmatic problems, that is, problems in social interaction, are central fea-
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tures in dementia. Much of the previous research on pragmatic practices in
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dementia has primarily been carried out through analysis of the ability of the
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person with dementia to produce different forms of discourse, for example sto-
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rytelling, picture description and clinical interviews (Hydén, in press; Perkins
119
et al., 1998). As pointed out by Perkins et al. (1998), while this kind of studies
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have provided important information regarding aspects such as communicative
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coherence, length of communication unit, rate of speech and numbers of infor-
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mation units or propositional forms, it has also been claimed that conversations
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during interviews or in test situations differ significantly from interactions that
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take place between people with dementia and their caregivers on a daily basis
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(Ripich & Terrell, 1988; Perkins et al., 1998). Studies based on data generated AQ1
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from task-oriented conversations have also been criticised for not taking into
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account the role of the conversational partner or contextual factors of the envi-
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ronment where the conversation takes place.
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 96 LIVING WITH DEMENTIA

130 There is a growing body of studies in which it is argued that discursive abili-
131 ties are better understood in terms of interactional achievements of the convers-
132 ing partners together, rather than individual measurements of the communicative
133 deficits of the person with dementia (see e.g. Hamilton, 1994; Ramanathan,
134 1997; Perkins et al., 1998; Hydén, in press; cf. Goodwin, 2003). A closer look at
135 unfolding interactions with people with dementia will provide a more compre-
136 hensive picture, not just of the loss in the cognitive abilities of people with
137 dementia, but also of their competence and abilities to use their available
138 resources to communicate with others. A common difficulty ascribed to indi-
139 viduals with dementia is problems related to turn-taking in conversation: people
140 with dementia are believed to gradually lose the ability to produce conversa-
141 tional turns at appropriate places (see Sacks et al., 1974 for a discussion of the
142 turn-taking system in conversation). Hamilton (1994), however, suggests that
143 the turn-taking mechanism is an aspect that remains relatively intact as the
144 disease progresses. Also in later stages of dementia, people are able to produce
145 their turns at the right place in conversation. Nonetheless, given the precise
146 timing required when producing a turn in conversation, cognitive deficiencies
147 may make it difficult for a person with dementia to take control over the con-
148 versational floor and to hold on to it for a long period of time (Perkins et al.,
149 1998). This is especially true in multiparty conversations in which the person
150 with dementia may just not be able to produce a turn quickly enough to secure
AQ2
151 the position as a next speaker (cf. Sabat, 1991; Causino Lamar et al., 1995).
152 As described by Hydén (in press), for a person with dementia, partaking in a
153 multiparty conversation is demanding in several ways; following an ongoing
154 conversation, coming up with a possible contribution and identifying a poten-
155 tial time for delivering this contribution in a way that maintains the conversa-
156 tional flow can be challenging. A consequence of this might be that the person
157 with dementia would only be able to contribute to the conversation when
158 explicitly given the floor by another speaker. Moreover, people with dementia
159 may produce long pauses in their own conversational turns, which may lead to
160 a conversational partner taking over the floor. The complex demands of this
161 kind of communicative activity could lead to a situation in which the person
162 with dementia completely withdraws from the activity (Hydén, in press).
163

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Communication and dementia from a dialogic
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167
and an emergentist approach to communication
168 and dementia
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170 The linguistic and communicative problems that have been demonstrated in
171 dementia have contributed to a view of people with dementia as incompetent
172 interactional partners whose language is incoherent or even meaningless. Such
 Communication and collaboration in dementia 97

173 views may make people enter conversation with a preconception that little of
174 what the person with dementia says is comprehensible (Sabat, 1994). Com-
175 municative ability, however, means more than just an ability to transfer informa-
176 tion; it is the site for human interaction, and primordially, a site for human
177 sociality (Schegloff, 1987, p. 101). Put differently, communicative ability is a
178 means for people to create and maintain human intersubjective relations, which
179 also contributes to people’s upholding of their personhood, identity and quality
180 of life (see Hydén et al., 2014). Communication is by nature a collaborative
181 activity, which requires contributions of co-interactants (Sacks et al., 1974).
182 Thus, to what extent a person with dementia is able to participate in conversa-
183 tion depends not only on the severity of the communicative problems he or she
184 encounters but also on the actions of interlocutors (Hamilton, 1994; Perkins
185 et al., 1998; Ramanathan-Abbot, 1994; Sabat, 1994). In order to create a com-
186 municative situation that is beneficial for people with dementia, it is important
187 to focus on well-functioning communicative strategies rather than on specific
188 linguistic or communicative problems. It is also critical to highlight types of
189 responses from the conversational partners of people of dementia that may
190 compensate for the problems individuals with dementia encounter (Harré &
191 van Langenhove, 1999).
192 The collaborative nature of communication implies that interlocutors may
193 distribute interactional labour between them in interaction. From a dialogical
194 perspective (Linell, 2009), where conversation is regarded as a collaborative
195 project, conversations are seen as joint activities, implying that participants have
196 some kind of shared goal, are committed to the activity, are mutually responsive
197 to each other and also are mutually supportive (see also Tomasello, 2014).
198 When people engage in a joint activity, each participant adds something new to
199 the shared knowledge, the participants’ common ground, and they shape the
200 current state of their own activity (Clark, 1996, p. 58). Participants add some-
201 thing new through contributions, often in the form of spoken utterances, but
202 sometimes also through gestures or an interactional package constituted by
203 both verbal and nonverbal actions (see e.g. Goodwin, 2013). From an emer-
204 gentist model of pragmatics (Perkins, 2007) and a dialogic perspective (Linell,
205 2009), interactants are responsive to each other, and through their own contri-
206 butions they exhibit to each other how they understand one another and how
207 they collaborate to divide interactional labour. The division of labour in interac-
208 tion is assumed to be asymmetrical due to different knowledge, abilities and
209 opportunities to participate in any communicative activity (Linell & Luckmann,
210 1991). Within this framework, pragmatic ability (which may be claimed to com-
211 prise collaboration in interaction) is composed of some basic principles that are
212 used to motivate the model. First, pragmatics is claimed to involve a range of
213 choices open to us in communication. Second, those choices can be made on
214 different levels of processing and they may involve also the use of tools and
215 artefacts as well as nonverbal resources in communication. The choices need to
 98 LIVING WITH DEMENTIA

216 be motivated by the requirements of interpersonal communication and they

217 may also be related to compensatory adaptations made by the participants in
218 interaction, especially if one of the participants has communicative problems,
219 such as in dementia (Perkins, 2007, pp. 51–52).
220 One way to compensate for communicative problems associated with
221 dementia diseases is to change the division of contributions between the partici-
222 pants (see Hydén, 2014a, p. 117). By contributing more to the activity, being
223 more responsible for the planning of the activity and engaging in repair work
224 and helping to keep track of what has already been accomplished, communica-
225 tive partners can engage in scaffolding of the person with dementia (ibid.; see
226 also Hydén, 2011, 2014b; Müller & Mok, 2014). Through such scaffolding, the
227 person with dementia is able to ‘access those communicative and cognitive
228 resources needed in order to continue participating in collaboration’ (Hydén,
229 2014a, p. 117). The reorganization of communicative and cognitive resources as
230 a strategy has been reported to be used also in relation to communication with
231 people with other types of brain damage (e.g. Duff et al., 2012; Goodwin,
232 2003). This is in fact a compensatory strategy to solve communicative problems
233 and may be equally adopted both by people with dementia and by their conver-
234 sational partners. If, for example, the person with dementia has trouble remem-
235 bering a name, he or she can either use an adaptive strategy himself or herself
236 (e.g. a mnemonic technique) or be provided with the name by the interlocutor.
237 In either way, the role of the conversational partner in providing support is cru-
238 cial to the progression and the achievement of communicative activities.
239 In sum, interactionally oriented studies using a dialogical perspective on com-
240 munication have shown us that collaboration is constituted by specific joint actions
241 commonly observed in various types of activities. Collaboration is practiced through
242 joint attention and negotiation of meaning (through verbal and nonverbal means)
243 and providing scaffolding for people with dementia (see Hydén, 2014b) by the use
244 of feedback signals (Hydén et al., 2013), attending to the repair initiations by people
245 with dementia, using prompts, providing instructions and extra support in mean-
246 ing-making practices and utilizing artefacts and tools in accomplishing activities
247 (see Majlesi & Ekström, 2016, and Lindholm, 2013). In what follows, we will discuss
248 some aspects of collaboration when encountering communicative problems in
249 activities involving people with dementia in both institutional and everyday set-
250 tings and how collaboration would help not only to solve the problems but also to
251 keep people with dementia engaged in the current activity.
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253

254 Collaboration in communication in daily activities

255

256 As discussed earlier, the ability to participate in any type of communicative

257 activity may become limited for people with dementia when their cognitive
258 and communicative abilities diminish. Depending on the stage of dementia,
 Communication and collaboration in dementia 99

259 for a person with dementia to participate in everyday activities, it is often

260 required that someone else both plan and monitor the activities (see e.g.
261 Jansson et al., 2001). One of the main strategies used in collaboration with
262 people with dementia is to provide support by engaging in talk and providing
263 scaffolding (verbal and nonverbal resources) to accomplish the activity. Scaf-
264 folding may also involve assigning specific tasks formatted to fit a person’s
265 specific abilities, dividing a task in smaller and simpler subtasks and formulat-
266 ing and structuring tasks in correspondence to an individual’s cognitive
267 resources (cf. Vikström et al., 2008). In the following, we will discuss the
268 details of such compensatory strategies and show the practical details of how
269 collaborative communication with people with dementia may be organized
270 and practiced to the benefit of people with dementia as active participants in
271 the activities in which they are involved.
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273

274 Communication in care homes and day-care centres

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276 Participating in interaction in institutional settings, like care homes and day-care
277 centres, is challenging both for people with dementia and for their caregivers.
278 The difficulties in communication are not only related to dementia but also to
279 observable challenges in the context of communication. Some of these p ­ roblems
280 are caused by multiparty talk (more than two parties) where there is overlapping
281 and parallel talk in interaction. Situations of overlapping talk easily create prob-
282 lems related to hearing and understanding (Drew, 1997), and parallel conversa-
283 tions can also be challenging to follow for people with dementia, who may have
284 impaired skills in language production and comprehension, and in addition,
285 hearing problems and attention deficits (Collette et al., 1999; Baddeley et al.,
286 2001; Bayles & Tomoeda, 2007). This means that people with dementia recur- AQ3
287 rently encounter difficulties in group activities when caregivers speak to other
288 participants without language and communication impairments (Lindholm,
289 2013). In addition, because of the diverse tasks of caregivers in institutional set-
290 tings, they often need to perform other activities simultaneously while talking to
291 the residents, and this easily results in hearing and comprehension problems
292 (cf. Bayles & Tomoeda, 2007; Lindholm, 2013). Besides, institutional settings are
293 often characterised by background noise and multiple concurrent stimuli, add-
294 ing to the challenges experienced by people with dementia.
295 Residents in care homes and day-care centres usually have varying language
296 and communication skills. This variation means that they differ in their abilities
297 to participate in conversation. Caregivers may find it challenging when encour-
298 aging everyone to participate actively in group conversations and faced with
299 situations in which some of the participants may withdraw from the interaction
300 because of their communication difficulties. The differences in skills of the par-
301 ticipants become evident in all kinds of conversations but are particularly
 100 LIVING WITH DEMENTIA

302 prominent in certain activities, such as games (Lindholm, 2013). Providing an

303 example from a game situation may illustrate how a caregiver at a day-care
304 centre can compensate for the varying skills of the elderly persons as it actually
305 happens when the conversation was recorded. In the example, Nurse Giselle is
306 playing a type of bingo, using flowers instead of numbers, with three elderly
307 participants: Anna, Olga and Ferdinand (all names are fictitious for ethical rea-
308 sons). First, the nurse reads a description of a flower. Then the other participants
309 try to guess the flower. Those who have the picture of the flower the nurse has
310 described put a marker on their bingo cards. Anna has problems following the
311 game and does not seem to be engaging. The nurse works actively to involve
312 Anna in the game, through engaging her in conversation and thus compensat-
313 ing for Anna’s difficulties.
314

315 Example 1: Aquavit.

316
01 Gis: what’s [that
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02 Ann: [I was about to say aquavit ((to Olga))
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03 Olg: that’s aster th[en
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04 Ann: [but it does[n’t fit in
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05 Gis: [yes it’s aster right ((to Olga))
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06 Olg: yes
322 07 Gis: what were you going to say Anna (.hh) (0.2) aquavit?
323 08 (0.2)
324 09 Ann: yes
325 10 Gis: [[heh heh[heh
326 11 Isa: [[heh heh[heh
327 12 Ann: [*we’re talking about* (0.2) *other things
328 here*
329

330 In the example, the caregiver (Nurse Giselle) attends to a very farfetched playful
331 guess that Anna makes (aquavit) and does not let her out of the game although
332 her guess is not relevant to the game’s domain. After she confirms Olga’s guess
333 about the flower, aster, in line 03, she engages in talk with Anna although Anna
334 had not directly addressed Giselle when she made her guess (see line 02). Ques-
335 tioning someone’s contribution in an activity is usually socially problematic as it
336 may lead to social conflicts. Giselle’s request for the repetition of Anna’s response
337 could thus be a potentially face-threatening act, because Anna’s contribution to
338 the ongoing activity may be seen as an exhibition of her inability to provide the
339 searched-for response. However, it could also be regarded as a playful response.
340 Anna’s use of the past tense in line 02, I was about to, and her continuation in
341 line 04, but it doesn’t fit in, however, provide keys to interpreting that after all
342 she had shown certain competence: she had considered giving the wrong
343 answer, but she realized that it wouldn’t fit in. Still, it remains a fact that Anna
344 failed to provide the correct answer. However, Giselle provides an interactional
 Communication and collaboration in dementia 101

345 space for Anna to put things right and she seems to be successful: the partici-
346 pants laugh together at Anna’s suggestion, and Giselle manages to engage
347 Anna in the activity.
348 Collaborating in communication and becoming a resource to help people
349 with dementia may also be relevant to other participants with dementia, as they
350 scaffold and help each other in group situations. In the following example, Fer-
351 dinand is telling about his experiences from World War II, explaining how the
352 soldiers slept in tents. As a response to his telling, nurse Rebecka poses a ques-
353 tion: did you always have someone as a fire warden (line 01). Rebecka’s question
354 causes Ferdinand problems, and David works actively with Rebecka to help
355 Ferdinand grasp the message.
356

357 Example 2: Fire warden.

358
01 Reb: did you always have someone as a fire warden
359
02 (0.2)
360
03 Fer: what
361
04 (0.2)
362
05 
Reb: 
did you always have someone who sat as a fire
363
warden
364 06 (0.9)
365 07 Dav: <fire warden>
366 08 (1.6)
367 09 Reb: in [ta- in the tent
368 10 Dav:   [about that
369 11 Fer:   [I have a hearing problem
370 12 Dav: (about [that)
371 13 Reb: [did someone always sit as a fire warden in

372 the tent
373 14 (1.0)
374
15 Dav: did someone sit as a <fire warden>
375
16 Fer: yes yesyes yesyes (.h) *kipinäkalle*
376
17 Reb: oh heh heh heh
377

378 As is obvious from the excerpt above, Ferdinand did not grasp what was asked
379 by Rebecka (line 03) either because he did not understand Rebecka’s question
380 or, as he says (line 11), he has a hearing problem. When the repetition of the
381 question does not help (line 05), David joins the conversation and concentrates
382 on repeating the most important element of Rebecka’s turn, fire warden, at a
383 slower pace (line 07). When Ferdinand makes a second expression of his hear-
384 ing problems (line 11), Rebecka repeats her previous question again (line 13).
385 David, in his turn, assists Rebecka by reformulating her question (line 15), inten-
386 sifying the articulation of fire warden, which is uttered slowly and with stress on
387 the first syllable. In line 17, Ferdinand finally perceives what the others are
 102 LIVING WITH DEMENTIA

388 talking about and responds by providing the Finnish element kipinäkalle, a play-
389 ful expression for a fire warden, which may have been used by soldiers during
390 World War II. It is impossible to say whether Ferdinand gains his new under-
391 standing as a result of only the previous repair turn or from the combined effect
392 of several repair turns. However, Ferdinand is apparently helped by the combi-
393 nation of slower talk and repetitions of previous turns; the compensations pro-
394 vided by several co-participants, including a caregiver and another person with
395 dementia, are successful.
396 As noted above, there are obvious difficulties related to interacting in institu-
397 tional settings, caused by both the institutional environment and the impaired
398 language and communication skills of the individuals. However, as the examples
399 have shown, there are also opportunities to overcome these challenges. Group
400 settings may provide opportunities for participants capable of collaborating and
401 scaffolding each other and compensating for each other’s shortcomings (Örulv,
AQ4
402 2008; Lindholm, 2013). In line with the theory of emergent pragmatics, group
403 conversations might thus function as a system where language and communi-
404 cation disorders ‘become common property, rather than solely the problem of
405 an individual’ (Perkins, 2007, p. 67).
406

407

408
Communication in home environment: facilitating
409 participation through instructions
410

411 Collaboration in any communicative activities is interactive by nature, and it

412 might not be limited to providing verbal prompts but might also include help-
413 ing a co-participant through instructed operations or tasks by, for example,
414 providing embodied directives in hands-on activities (such as cooking, cleaning,
415 etc.). Recently, it has been argued that providing instructions may be a way to
416 collaborate and help people with dementia to participate in various everyday
417 activities (Hydén, 2014a; Majlesi & Ekström, 2016; Ekström & Majlesi, forth-
418 coming). Providing instructions in face-to-face ordinary interaction is usually
419 concomitant with a constant supply of directives and requests (see e.g. Good-
420 win & Cekaite, 2013). Telling someone else what to do can be done in a number
421 of different ways, including orders, commands, assignments, requests, sugges-
422 tions, proposals and hints (e.g. Ervin-Trapp, 1976; Searle, 1979; Stevanovic &
423 Svennevig, 2015). The kind of directive used in a certain situation displays to
424 what degree the speaker ‘assumes control over the recipient’s actions’, and ‘the
425 very fact that so many different ways of “getting someone to do something”
426 exist, highlights the careful negotiation that can be required when initiating an
427 action that impinges on another person’s freedom of action’ (Kent, 2012,
428 p. 712). While directives have been foregrounded as key to both controlling and
429 eliciting actions of another party (Ervin-Trapp, 1976), it can also be a resource
430 to facilitate a person with dementia participating in ongoing activities (Vikström
 Communication and collaboration in dementia 103

431 et al., 2005, 2008; Jansson et al., 2001; Hydén, 2014a; Majlesi & Ekström,
432 2016). Giving directives can be initiated by the co-interactants of a person with AQ5
433 dementia or in the response to the request by the person with dementia. In a
434 recent study, it has been argued that directives ‘provide an interactional envi-
435 ronment wherein the person with dementia can make contributions to the joint
436 activity in an efficient way’ (Majlesi & Ekström, 2016, p. 44). Activities organised
437 around directive sequences are described as ‘interactional environments where
438 the person with dementia may be given opportunities to actively exhibit his/her
439 abilities and knowledge in accomplishing the given tasks and participate in
440 everyday activities’ (ibid. 45).
441 Several studies have shown that the ways directives are designed are contin-
442 gent on to whom the request is being made and in what context (e.g. Antaki &
443 Kent, 2012; Goodwin & Cekaite, 2013; Craven & Potter, 2010; Curl & Drew,
444 2008; Heinemann, 2006; Lindström, 2007; Mondada, 2014). Generally, in ordi-
445 nary, adult-adult interaction, entitled directives are considered to be an invasive,
446 and sometimes even offensive, action (Brown & Levinson, 1987). While direc-
447 tives among (adult) friends are often both mitigated and delayed (as in the form
448 of requests), in task-oriented activities as well as in parent-child interaction,
449 directives are neither delayed nor oriented towards as troublesome but rather
450 are a basic resource through which the activities are accomplished (Goodwin &
451 Cekaite, 2013). This seems also to be the case in interaction involving people
452 with dementia. For example, in interaction between people with dementia and
453 their family caregivers at home environments, directives have been shown to be
454 produced without hesitation or other mitigating actions (Ekström & Majlesi,
455 forthcoming). In their study of a couple living with dementia, Ekström and
456 Majlesi (forthcoming) show that directives seem to be recurrently formulated as
457 telling the person with dementia what to do, as opposed to, for example, asking
458 or suggesting an action for the person with dementia (cf. various forms of direc-
459 tive in Ervin-Trapp, 1976). As shown in their study, neither the caregiver nor the
460 person with dementia orients towards giving directives as interactionally prob-
461 lematic but rather as an expected routine action in the activities.
462 The examples below show parts of the collaboration between a couple, Ellen
463 and her husband, Tom, who is diagnosed with middle-stage Alzheimer’s dis-
464 ease, when they are doing various kitchen chores. The directives are either initi-
465 ated by Ellen or emerge in response to Tom’s inquiries.
466

467 Example 3: Unplugging.

468
01 Tom: ((turns off the water))
469
02 
(7.7)((puts the pot on the countertop and takes out
470
a dishtowel))
471
03 Ell: can you unplugg that one there, then,
472
04 (0.6)
473
 104 LIVING WITH DEMENTIA

474 05 Tom: 
is this a dish towel? this one or is it ((holds
475 a dish towel))
476 06 Ell: yeah that’s a dish towel
477 07 (1.3)
478
08 Ell: º(m)º (0.2) you can unplugg that one there,
479
09 (1.1) ((Tom puts down a bowl and leans toward the cord))
480
10 Ell: when you have it (.) taken away=
481
11 Tom: =that?
482
12 Ell: yeah
13 (1.0) ((Tom unpluggs the dough maker))
483
14 Ell: that one should (0.2) should be put away
484
15 ((Tom does what was asked him to do))
485

486

487 In collaborative activities involving people with dementia, as the example above
488 shows, instructions are usually set out by the caregiver through a series of direc-
489 tives. Ellen monitors how Tom accomplishes the tasks and if necessary, comes in
490 with extra guidance to help Tom with further instructions. She is also aware of
491 providing the next task only when the previous one is fulfilled. In this way, she
492 manages to keep Tom participating in what is constructed as a joint activity in the
493 kitchen, and she also controls the flow of the tasks in the kitchen. The example is
494 evidence that collaboration does not mean that mutuality and commonality as
495 the indispensible feature of communication may necessarily entail equal roles,
496 knowledge and opportunities of participants in a communicative activity (Linell &
497 Luckmann, 1991). Sometimes mutuality and reciprocities are mirrored in the
498 social actions (such as greeting) and sometimes they vary and in fact become
499 ‘complementary’ in social relations (ibid, p. 3; e.g. giving instructions and follow-
500 ing them). Thus, collaboration may entail asymmetrical division of labour both in
501 terms of being responsible for activities with various difficulties and in terms of
502 providing directives and assuming rights and entitlements to instruct.
503

504

505

506
Scaffolding in joint activities with people with
507
dementia: elaborating on some compensatory
508 strategies
509

510 So far, we have discussed a dialogical approach (Linell, 2009) together with an
511 emergent pragmatic perspective (Perkins, 2007) to communicative activities
512 involving people with dementia, where we also demonstrated through exam-
513 ples how such activities require certain collaborative actions by both parties in
514 terms of compensatory strategies. In what follows, we will attend to some
515 aspects of such collaboration, and particularly the strategy of task division to
516 facilitate the participation of people with dementia in social activities, especially
 Communication and collaboration in dementia 105

517 multitask everyday activities. We will emphasise the significance of embodiment

518 in interaction with people with dementia and will also show the mutuality in
519 collaboration by attending to the specific compensatory strategy used by peo-
520 ple with dementia in exploiting their communicative partner as a resource in
521 interaction.
522

523

524
Sequencing and the use of subtasks
525

526
In collaborative activities involving people with dementia, scaffolding in the
527
form of the guiding actions of the co-participants are largely oriented towards
528
what might be called structuring work. Instructions and other guiding actions
529
are mainly directed towards providing information about what task should be
530
performed next (Majlesi & Ekström, 2016; Hydén, 2014a). This generally divides AQ6
531
the activity in subtasks and sequences these subtasks in a particular order. Focus-
532
ing on smaller subtasks and performing one task at a time facilitates the partici-
533
pation of people with dementia in the activity (see Hydén, 2014a).
534
In the following example, the same couple as in Example 3 are baking cin-
535
namon buns. It is time to coat buns with egg and sugar, and Ellen assigns this
536
task to her husband, Tom, diagnosed with dementia. Ellen is not only dividing
537
the main activity (coating the buns) into smaller subtasks, but she is also sepa-
538
rating these subtasks into smaller and more manageable units.
539

540
Example 4: Preparing eggs.
541

542
01 Ell: 
(we)’re going to prepare the egg so (then) you
543
can bring those
544
02 things
545
03 (1.3)
546
04 Tom: 
are we going to use this? ((holds a plastic can
in front of Ellen))
547
05 (0.2)
548
06 Ell: yeah
549
07 (1.6)
550
08 Ell: (you prepare) (.) you can prepare two eggs at once
551

552

553 Having introduced the first sub-activity (preparing the eggs), Ellen directs Tom
554 to ‘get those things’ (line 01). Tom is already standing next to the cupboard
555 where the things needed to prepare the eggs are stored, something that might
556 help him grasp which things Ellen is referring to and where to find them. When
557 Tom has found the right items and Ellen has confirmed that they are, indeed,
558 the things she was asking for, Ellen continues by telling Tom to prepare two
559 eggs at once (line 08). While this statement is not designed as a reminder of
 106 LIVING WITH DEMENTIA

560 what the main task is, but merely as an additional instruction on the number of
561 eggs to prepare, the instruction nevertheless functions as a prompt for Tom to
562 continue with the activity and a cue for what to do next (fetch the eggs). Tom
563 walks to the fridge and after some discussion with Ellen on the size of the eggs,
564 he fetches two eggs and both cracks and shakes them without Ellen telling him
565 to do so. While instructions are both important and sometimes necessary to
566 facilitate the actions for a person with dementia, it can be equally important to
567 withhold instructions when they are not required. Performing small tasks inde-
568 pendently and without a preceding directive from a caregiver could be benefi-
569 cial for a person’s self-esteem and selfhood.
570 As previously argued by Hydén (2014a), dividing a task into smaller subtasks
571 and providing a structure that sequences these subtasks seems to be a fruitful
572 way to organize an activity where a person with dementia can not only partici-
573 pate but also make important contributions to the overall activity. The caregiver
574 in the example above guides and supports the person with dementia, but, at
575 the same time, she leaves room for him to initiate actions and to perform parts
576 of the tasks independently when suitable.
577

578

579 Embodied guidance and nonverbal communication

580

581 Collaboration and compensatory strategies through guiding and instructing

582 people with dementia may involve not only verbal directives but can also be
583 constituted by nonverbal actions. In relation to people with dementia, this could
584 be especially fruitful as nonverbal instructions – such as demonstrations (Lind-
585 wall & Ekström, 2012), showing where things are by pointing (Mondad, 2014),
586 or even using shepherding action (Cekaite, 2010) – can effectively guide the
587 person with dementia’s focus, perception and orientations in the activity. While
588 touch is recurrently used between couples living with dementia as in the follow-
589 ing case, it goes without saying that it should be used with care and considera-
590 tion of respecting one’s personal space.
591 Following the same couple in the example below, we present a sequence of
592 events during which Ellen suggests that it is coffee time (line 01), and instructs
593 Tom with a directive to sit down first by pointing to a place ‘here’ (line 03) and
594 then by actually guiding him bodily towards a chair (line 04). Tom complies
595 with the request both verbally and with the actual performance of the instruc-
596 tion (line 05).
597

598 Example 5: Coffee time.

599
01 Ell: we could need some (.) coffee
600
02 (5)
601
03 Tom: a:
602
 Communication and collaboration in dementia 107

603 04 Ell: you can sit down here then Tom ((pointing toward
604 a chair and
605 05  touching Tom on the arm in a guiding action
606 toward the chair))
607
06 Tom: 
yes then I do that ((Tom walks toward the
608
appointed chair))
609
07 Ell: 
this one (.) I’ve been meaning to ask you if
610
you’ve seen this (1)
611
08  this have you seen this one ((fetches a maga-
zine and shows to Tom,
612
09 who is now standing beside the kitchen table))
613
10 (1)
614
10 Ell: 
sit down and have a [look ((hands over the
615
magazine to Tom))
616
11 Tom: [yeah::
617

618

619
This example shows that collaboration may require embodied engagement in
620
the activity and helping people with dementia using hands-on practices. Provid-
621
ing directives as a strategy to get a person to do something may also involve
622
embodied directives, that is, instructional directives that are constituted both by
623
talk and by visible display of embodied ways of performing the tasks (e.g. point-
624
ing and touching). Although Ellen’s monitoring and instructing through
625
embodied directives may be inferred as exerting social control over the activity
626
of the person with dementia, Ellen’s actions could also be considered as scaf-
627
folding resources. Through her doings, Ellen provides opportunities for Tom to
628
be engaged in the activity, and to do so in an efficient way. Participating even
629
in a seemingly simple practice of having coffee, considering the condition of the
630
person with dementia, requires certain skills and competencies, and through
631
her instructional actions, Ellen provides Tom with the sufficient support to be
632
able to participate in this activity.
633

634

635 People with dementia as competent collaborative

636
partners
637

638
Several studies (e.g. Majlesi & Ekström, 2016; Hydén, 2014a; Hydén et al., AQ7
639
forthcoming) show that people with dementia not only are able to participate
640
in – and contribute to – collaborative activities, they even participate in skilful,
641
independent ways when they are provided with a sequential structure that tem-
642
porally links the various subtasks into an overall activity. Dementia seems to
643
mainly affect overall organisational skills and not to the same extent the abilities
644
to perform practical, everyday tasks (naturally depending on the severity of the
645
 108 LIVING WITH DEMENTIA

646 condition). This is, for instance, indicated by the kind of instructions given to
647 people with dementia in collaborative joint activities. In collaborative joint
648 activities, instructions usually do not include the reason for doing a specific task,
649 and the specific procedures involved in performing a task is also often treated as
650 already known. This may indicate that the practices and procedures involved in
651 carrying out various everyday tasks and activities are not expected to be affected
652 by a dementia disease.
653 While the work caregivers and relatives do is essential to facilitate the partici-
654 pation of people with dementia, it is important not to overlook the compensa-
655 tory strategies used by people with dementia themselves to manage difficulties
656 and problems in communication. Several studies have demonstrated how peo-
657 ple with dementia can actively use the material environment – including collabo-
658 rating partners – to compensate for challenges they encounter (e.g. Majlesi &
AQ8
659 Ekström, 2016; Hydén, 2014a). Collaborators definitely play an important role
660 for people with dementia to be able to participate in everyday activities, but
661 recent studies indicate that people with dementia are much more active in the
662 accomplishment of collaborative activities than has previously been described
663 (ibid). While collaborating partners usually need to take on responsibilities for
664 initiating activities and guiding people with dementia, people with dementia are
665 also actively seeking the guidance and support they need to be able to accom-
666 plish the task at hand. People with dementia may use various methods when
667 faced with difficulties in interaction. In what follows, we will brief out some of
668 the problems and corresponding solutions used in interaction to overcome vari-
669 ous difficulties.
670

671

672
Soliciting help and initiating repair
673

674
As shown in the examples above, people with dementia recurrently, like any
675
other communicative partners, ask their collaborator questions as a way to
676
obtain information. This could, for example, be a repair initiation to understand
677
the request (Example 6, line 03) or a solicitation for help in doing or finding
678
something (Example 7, line 08).
679

680
Example 6.
681

682
01 Ell: (then) you fetch the pearl sugar then
683
02 (0.4)
684
03 Tom: >what?<
685
Example 7.
686

687 08 Tom: ºwhere did I put it nowº=

688 09 Ell: =no you haven’t got that ºyetº
 Communication and collaboration in dementia 109

689 While repeatedly asking a partner for information might be seen as an indica-
690 tion of inability, a more fruitful way to understand the asking of questions might
691 be to see this as a strategy to compensate for (perceived) inabilities and thereby
692 show competence in solving the emerging problems in interaction (seeing it
693 dialogically, Linell, 2009). By asking questions, people with dementia not only
694 show that they are aware of what they need to know in order to continue the
695 activity at hand and that they recognise how to get this information (Lindholm,
696 2014); they also competently avoid doing things that might generate mistakes
697 by asking for further instructions when the instructions given are not adequate
698 to act on.
699

700

701 Seeking confirmation and validation

702

703 As mentioned above, seeking confirmation could be a practice for people with
704 dementia to also receive validation from their collaborating partners when mak-
705 ing contributions to the joint activities (e.g. following the instructions). In col-
706 laborative activities, people with dementia have been seen to frequently ask
707 their collaborating partner to confirm and validate their actions and choices and
708 to help decide when a subtask is properly and adequately performed (Majlesi &
709 Ekström, 2016). This kind of confirmation seeking is done both orally, by asking
710 the partner, and by showing the results of choices and actions to the partner.
711 Similar to the practice of asking questions, recurrent confirmation seeking is
712 used as a compensatory strategy by people with dementia. Although it could
713 also be viewed as a sign of incompetence and inability in relation to the current
714 activity, this kind of behaviour can also signal a skilled strategy to avoid making
715 mistakes. In this sense, the person with dementia can be seen to actively use his
716 or partner as a compensatory resource in the accomplishment of the task.
717 The following example demonstrates such a practice. When preparing eggs
718 for baking cinnamon buns (Examples 8 and 9), Ellen introduces the task of
719 preparing eggs and suggests that they are going to brush the eggs over the
720 buns. Then she provides a directive to Tom to fetch a can to use for mixing
721 the eggs:
722

723 Example 8: Preparing eggs.

724
01 Ell: 
(we)’re going to prepare the egg so (then) you
725
can bring those
726 02 things
727 03 (1.3)
728 04 Tom: 
are we going to use this? ((holds a plastic can
729 in front of Ellen))
730 05 (0.2)
731 06 Ell: yeah
 110 LIVING WITH DEMENTIA

732 In the unfolding interaction, Tom demonstrates his competence in understand-

733 ing what Ellen means by the word ‘stuff’ (line 01) in the first place. However,
734 Tom seeks confirmation to match the indexical expression with what he took
735 out of the cupboard. He holds a plastic can in front of Ellen and asks ‘are we
736 going to use this?’ (line 04). In this way, he categorically knows he was in right
737 and Ellen confirms it in her response (line 06).
738

Verbalizing and commenting on an ongoing action

739

740

741

742
Another, more subtle, practice used by people with dementia, which also func-
743
tions as a strategy to avoid making mistakes, is online commentaries accompany-
744
ing their own actions (Majlesi & Ekström, 2016). When participating in
745
collaborative activities, people with dementia sometimes describe their own
746
actions aloud but without specifically addressing their collaborators (Lind-
747
holm,2016). While the motive behind this kind of behaviour is not possible to
748
discern without speculations, one function it plays in collaborative activities is to
749
make it possible for collaborating partners to follow and monitor – and thereby
750
if necessary also correct – the actions of the person with dementia. The follow-
751
ing example shows a sample of such online commentaries and how Ellen, the
752
family caregiver of Tom, responds to those comments by giving reassurance as
753
to the correctness of his actions. It is an excerpt of an activity in which Tom is
754
putting the electric mixer away, and he has to rearrange things in the cupboard
755
to make a place for the mixer.
756
Example 9.
757

758 01 Ell: 
and then you put (.) can’t have that one in
759 there no put [it away
760 02 down there
761 03 Tom: [those]
762 04 I put in there
763 05 Ell: yeah that’s right
764 06 (1.0)
765
07 Tom: [(like that)]
766
08 Ell: [and] then [(you have to)-]
767
09 Tom: º(that one goes)º (0.3) º(here)º
768
10  (2.6) ((Tom puts away the dough maker in the
769
cupboard))
11 Ell: there you go (.) perfect
770

771

772 As the example shows, when Tom receives the directives as to how to rearrange
773 things in the cupboard (line 01), he verbalizes what he does in his response
774 (lines 02 and 03). He does it without looking at Ellen. Tom’s action, however, is
 Communication and collaboration in dementia 111

775 positively and affirmatively responded to by Ellen (line 04). When Tom contin-
776 ues to comment further on his own action (line 08), again Ellen provides feed-
777 back on his comment and confirms his action (line 10).
778 In the example, Tom makes available his own actions to his collaborating
779 partner through verbal formulations of his doing. In this way, he provides his
780 partner with the opportunity to follow, adjust and correct his performance in
781 the current task. Careful observations of communication with people with
782 dementia would reveal strategies that can be used to benefit people with
783 dementia by helping them successfully participate in interaction and accom-
784 plish the task or the activity in which they are engaged.
785

786

787 Conclusion
788

789 In this chapter, we have introduced two closely related perspectives on com-
790 munication (Linell, 1998; Perkins, 1997) and discussed how these perspectives
791 can be used to adjust understandings of dementia and communication in a way
792 that emphasises communicative abilities of people rather than communicative
793 problems. In the chapter, we have argued for the importance of viewing com-
794 munication as a collaborative activity, in which participants are mutually and
795 cooperatively responsible for meaning making and understanding. Using exam-
796 ples from various contexts, we have demonstrated the significance of using an
797 integrated approach in which verbal and nonverbal communicative resources
798 are understood as mutually supporting and co-dependent systems working
799 together when conveying meaning (Goodwin, 2007; Heath & Hindmarsh,
800 2002; Streeck et al., 2011). In the chapter, we have put forward collaboration as
801 a way to increase the engagement of people with dementia and examined how
802 communicative activities can be organised to facilitate people with dementia
803 participating in and contributing to various communicative activities. We have
804 also introduced the concept of scaffolding (Hydén, 2014a; see also Hydén, 2011,
805 2014b; Müller & Mok, 2014) as a way to compensate for communicative prob-
806 lems associated with dementia diseases. By changing the division of contribu-
807 tions between the participants towards an increased responsibility for
808 communicative partners, people with dementia can gain access to information
809 and resources that are no longer readily available to them.
810 While caregivers – both formal and informal – constitute invaluable support to
811 guarantee that people with dementia continue to participate in communicative
812 activities, we have also underlined the importance of not portraying people with
813 dementia as passive receivers of guidance and support. Through our examples,
814 we have demonstrated a number of compensatory strategies used by people
815 with dementia themselves (Majlesi & Ekström, 2016; Hydén, 2014a; Örulv, 2008;
816 Lindholm, 2013, 2014). People with dementia have been shown to scaffold each AQ9
817 other and share the responsibilities for problems that occur (Örulv, 2008;
 112 LIVING WITH DEMENTIA

AQ10
818 Lindholm, 2013; cf. Perkins, 2007), and they are also actively pursuing the sup-
819 port they need to be able to accomplish a current activity. In the chapter, we
820 have shown examples in which people with dementia are not only aware of what
821 kind of information they need and how to get this information – they also com-
822 petently use strategies to avoid doing things that might generate mistakes. The
823 described collection of compensatory strategies, along with the dialogical and
824 emergentist theoretical views (Linell, 1998; Perkins, 1997), are of great clinical
825 relevance. Enhancing the active participation of people with dementia, and view-
826 ing their actions from a dialogical perspective, will have an impact on their pos-
827 sibilities of maintaining their identity as competent and active participants in the
828 society.
829

830

831
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 990 Q. No. Query
991 AQ1 AU, please put these in alphabetical order unless there is a reason not
992 to do so.
993 AQ2 AU, please put these in alphabetical order unless there is a reason not
994 to do so.
995 AQ3 AU, please put these in alphabetical order unless there is a reason not
996 to do so.
997 AQ4 AU, please put these in alphabetical order unless there is a reason not
998 to do so.
999 AQ5 AU, please put these in alphabetical order unless there is a reason not
1000 to do so.
1001 AQ6 AU, please put these in alphabetical order unless there is a reason not
1002 to do so.
1003 AQ7 AU, please put these in alphabetical order unless there is a reason not
1004 to do so.
1005 AQ8 AU, please put these in alphabetical order unless there is a reason not
1006 to do so.
1007 AQ9 AU, please put these in alphabetical order unless there is a reason not
1008 to do so.
1009 AQ10 AU, please put these in alphabetical order unless there is a reason not
1010 to do so.
1011 AQ11 Please note that the references ‘Astell et al. (2010), Bourgeois et al.
1012 (2001), Brataas et al. (2010), Ekström et al. (2015), Garfinkel (1967,
1013 2002), Mentis et al. (1995), Müller and Mok (2014), Sacks (1992),
1014 Schegloff et al. (1997), Small et al. (2003), Österholm and Hydén
1015 (2014)’ are given in list but not cited in text. Please cite these refer-
1016 ences in text or delete it from the list.
1017 AQ12 AU, some contributors have put Örulv entries at the end of the refer-
1018 ence list because of placement of the letter Ö in the Swedish alphabet.
1019 I suggest doing the same here.
1020

1021

1022

1023

1024

1025

1026

1027

1028

1029

1030

1031

1032