Personhood in dementia care - SAGE Journals - Sage Publications

a rt i c l e

Personhood in dementia care Developing a research agenda for broadening the vision DEBORAH O’CONNOR ALISON PHINNEY ANDRE SMITH JEFF SMALL

University of British Columbia, Canada

de men tia dementia

© 2007 sage publications www.sagepublications.com vol 6(1) 121–142


University of Victoria, Canada


B A R B A R A P U RV E S J O A N N P E R RY



ELISABETH DRANCE


M A RT H A D O N N E L LY


H A B I B C H AU D H U RY

Simon Fraser University, Canada

LY N N B E AT T I E


Abstract Dementia has been understood primarily as a biomedical phenomenon with a trajectory of irrevocable decline related to neurodegenerative changes. However, growing evidence suggests that the performance and behaviour of persons with dementia are not exclusively determined by neuropathology but are also influenced by personal histories, social interactions and social contexts. This evidence shifts attention from the disease process to the need for a more in-depth understanding of the place of personhood in dementia care. Despite its intuitive appeal however, there is limited empirical research grounding this approach to care. This article articulates a framework for organizing research in this area that is based on a critical review and synthesis of research. It encompasses three interrelated and intersecting domains of inquiry: the subjective experience of the person with dementia, the immediate interactional environment and the broader socio-cultural context. Each domain encapsulates a unique but interrelated dimension of a person-centred approach to dementia care. Keywords dementia; interactional environment; person-centred care; personhood; socio-cultural context; subjective experience

DOI: 10.1177/1471301207075648

dementia 6(1)

Introduction Dementia has traditionally been understood as a biomedical phenomenon, a disease with a trajectory of irrevocable decline resulting primarily from neurodegenerative changes. However, this view is now being contested by those who claim that the performance, behaviour and quality of life of persons with dementia are determined not only by neuropathology (Cheston & Bender, 1999; Franssen & Reisberg, 1997; Mitnitski, Graham, Mogliner, & Rockwood, 1999; Snowdon, 1997) but also by their personal histories, their interactions with others, and by how they are perceived within their social contexts (Harding & Palfrey, 1997; Hughes, Louw, & Sabat, 2006; Kitwood, 1997). There is growing evidence to indicate that at least some of the negative consequences associated with dementia may be mitigated or delayed by an approach to care that respects and supports each individual’s personhood, and that facilitates its transformation and development throughout the disease (for example, Cohen-Mansfield, Parpura-Gill, & Golander, 2006; McGilton, 2004; Woods, 2001). Much of this work has drawn, either directly or indirectly, on Kitwood’s definition of personhood as ‘the standing or status that is bestowed upon one human being, by others, in the context of relationship and social being’ (Kitwood, 1997, p. 8). While traditional views of personhood have carried a distinctly cognitivist bias (Harrison, 1993), Kitwood’s definition is based on a broader conceptualization that can apply to persons even with severely compromised cognitive function. As such, it offers exciting possibilities for positively influencing the dementia experience through the implementation of person-centred care practices; attention to personhood has been hailed as perhaps one of the most significant advances in understanding dementia in the past decade (Brooker, 2004; Woods, 2001). Despite its intuitive appeal, however, this approach to care is still somewhat marginalized and requires further research to understand its potential impact and the challenges and opportunities associated with its implementation. This article presents a conceptual framework for organizing current thinking in this area, and identifies future directions for research.

Origins of the conceptual framework1 The proposed conceptual framework has emerged out of the collaborative efforts of a group of multi-disciplinary researchers from several Canadian universities who together constitute the Centre for Research on Personhood in Dementia (CRPD). This group comprises researchers from a variety of backgrounds, including architecture, linguistics, medicine, nursing, 122

o ’ c on n o r e t a l . : pe r s on h o o d i n d e m e n t i a c a r e psychology, psychiatry, social work, sociology and speech language pathology. Three sources of information were used by this group to articulate a multi-level approach to understanding personhood in dementia care. First, in November 2000 the University of British Columbia Dementia Research Collaborative Working Group2 hosted an international workshop focused on dementia and personhood. In preparation for the two day workshop, as experts in the field, invited participants3 were asked to submit a brief position paper outlining their ideas regarding directions for research in this area. A thematic analysis of these papers yielded three broad domains of inquiry which were further developed over the course of the workshop: the subjective experience, the interactional environment, and the sociocultural context. These identified domains were used as a beginning organizational structure for the second step, a critical review of the literature. A literature search was conducted of several different data bases (i.e., ERIC, Medline, OVID, PsycInfo, Socio-file) using the keywords ‘personhood, identity or self’ and ‘dementia, Alzheimer’s or cognitive impairment’. This formal search was supplemented through references provided by individual members affiliated with the CRPD. In total, a database of over 350 journal articles, book chapters and conference proceedings was created and reviewed. The intent was to create a database that was sufficiently inclusive to permit an in-depth examination of the literature in this area in order to determine the extent to which a personhood approach to care has been conceptually and empirically developed, and to identify gaps in understanding. This search does not claim to be exhaustive. As a third step, this conceptual framework was further refined through informal dialogues with researchers in the United Kingdom.4 Meetings were held with 29 UK researchers working in the area of personhood and dementia, representing six research centres and two Dementia Services Development Centres. The focus of these meetings was to explore emerging research being conducted in this area and to identify commonly perceived gaps in knowledge. CRPD researchers used these informal discussions to determine how the insights supported, extended and/or challenged the organizing framework.

Directions for research: An organizing framework This framework represents an interdisciplinary effort that integrates biomedical, social sciences and humanities perspectives at both the academic and clinical/professional level. It serves to organize current knowledge in this area from diverse disciplines and perspectives in order to provide a template for structuring creative and innovative research 123

dementia 6(1) collaborations. Consensus about the usefulness of the framework was achieved when it met two primary criteria: (1) It created a structure about research in the area of personhood and dementia that was sufficiently inclusive to allow each researcher to locate him/her self within a broader framework, and (2) It enabled individual researchers to gain a more complex understanding of the relationship of their work to that of other researchers in the area. As illustrated in Figure 1, the framework focuses on two broad objectives: (a) understanding personhood and (b) supporting personhood. Broadly speaking, these two inter-related objectives draw attention to the need to better describe what personhood looks like within the dementia experience, and to identify ways to foster or support it, for example, through intervention research. Research on personhood is then conceptualized as encompassing three intersecting domains of inquiry: the subjective experience (SE), the interactional environment (IE) and the socio-cultural context (SC). Each encapsulates an essential dimension of a personhood approach to dementia care that requires further understanding, yet none can be fully understood in isolation from the others. Each of these domains will be examined in relation to furthering research on personhood in dementia.

Subjective experience A dominant theme in the literature on dementia and personhood concerns the importance of understanding the subjective experience of the person

Understanding personhood

Subjective experience The interactional environment

Personhood

The socio-cultural context

Supporting personhood

Figure 1 A framework for conceptualizing research focused on personhood in dementia

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o ’ c on n o r e t a l . : pe r s on h o o d i n d e m e n t i a c a r e with dementia. In contrast to historical assumptions that persons with dementia are unable to reflect on their own experiences, there is growing recognition that they are often quite aware of their situation and can contribute important insight about their experiences and needs (see, for example, Clare, 2003). This insight is critical for the development of care practices that are relevant, person-centred and strength-based. Over the past decade, a small but growing body of exploratory research has begun to document the subjective experience of living with dementia. The UK, with policies such as England’s National Health Framework for Older People explicitly promoting person-centred care, has taken a lead role in developing this body of research (see, for example, Wilkinson, 2002) although work in this area is also being done by American researchers (see, for example, Harris, 2002). This work is based mostly on conversational interviews conducted with persons with mild to moderate dementia. It explores what it means to be living with dementia, and how persons with dementia respond to the challenges they face in their everyday lives. A common theme in this research is the sense of profound loss that many persons with mild to moderate dementia express; they feel that their abilities are failing them and that they are becoming estranged from the world, unable to interact with others and engage in once meaningful activities (for example, Acton, Mayhew, Hopkins, & Yauk, 1999; Burgener & Dickerson-Putnam, 1999; Harris & Keady, 2004; Menne, Kinney, & Morhardt, 2002; Ostwald, Duggleby, & Hepburn, 2002; Phinney, 1998, 2005; Snyder, 2001). Much of this research also indicates that persons with dementia actively engage in a preservation of their self, using a variety of strategies. These include: writing reminder notes, avoiding difficult situations, maintaining a positive attitude, and relying on others for assistance. The effectiveness of these strategies has yet to be established though, and research examining how these coping styles and perceptions of awareness change over time is only beginning to emerge (for example, Clare, Roth, & Pratt, 2005). While the issues of coping and loss figure prominently in this literature, several studies have focused on the way affected individuals perceive the impact of dementia on their sense of self and identity. Drawing on qualitative, in-depth interviews with persons with dementia, some researchers have documented the subtle tensions in individuals’ experiences of feeling themselves to be the same persons while also acknowledging how they are changed (Harris & Sterin, 1999; Klein, Cosmides, & Costabile, 2003; Lyman, 1998; Phinney, 2005). Others have examined how persons with dementia convey a sense of personal identity through their self narratives (Basting, 2003; Beard, 2004; Crisp, 1995). At the same time, research that focuses on how the self in dementia is constructed through everyday 125

dementia 6(1) language and behaviour illustrates the intersection of the domains of subjective experience and interpersonal context, in which the role of interlocutor is also critically important (Davis, 2005; Hubbard, Cook, Tester, & Downs, 2002; Sabat, 2001; Small, Geldart, Gutman, & Scott, 1998; Tappen, Williams, Fishman, & Touhy, 1999). Similarly, more recent research has begun to explore how persons’ subjective experiences of dementia are shaped within the context of their personal relationships (Clare & Shakespeare, 2004; Forbat, 2003a; Hellström, Nolan, & Lundh, 2005a, 2005b). This literature offers a promising beginning, although many important issues still need to be addressed. First, most research to date has focused on the experiences of persons who are in earlier stages of dementia. This limits our understanding of the experience of persons in more advanced stages of dementia and has provided limited opportunity to examine how subjective experience changes over time. This limitation highlights the need for a more complex, longitudinal understanding of subjectivity in dementia. This includes looking beyond what is said in order to consider how personhood is embodied (Kontos, 2005; Matthews, 2006; Phinney & Chesla, 2003). It also draws attention to the need for researchers to consider innovative approaches to data gathering, since traditional methods could be inadequate once the dementia progresses and communication skills deteriorate. The recent use of videotape and other observational strategies may facilitate the involvement of those with more advanced disease in the research process, thus providing opportunity to better understand the experience of dementia across the illness trajectory (Cook, 2002; Hubbard et al., 2002; Phinney & Brown, 2004). Second, heterogeneity has not been fully explored in dimensions other than those associated with illness trajectory. There has also been little attention devoted to examining the ways in which identity intersects with class, race, gender and ethnicity in constructing the subjective experience (Cohen-Mansfield, 2000; Hulko, 2002; Proctor, 2001). This too suggests the need for a more complex view of subjectivity, intersecting with the socio-cultural domain of inquiry. Finally, there is growing recognition of the need for outcome measures to reflect the input and experiences of persons with dementia. However, the inclusion of the perspective of the person with dementia in outcome evaluations remains a research challenge (Bamford & Bruce, 2000; Fortinsky, 2001; Pritchard & Dewing 2001; Roberts et al., 2000; Whitlatch, Feinberg, & Tucke, 2005). To date, dementia care interventions and services have typically been evaluated using outcome criteria based on perspectives of formal and/or informal caregivers or researchers. However, there is research to suggest that the perspectives of persons with dementia and those speaking on their behalf do not necessarily correspond (Bamford & 126

o ’ c on n o r e t a l . : pe r s on h o o d i n d e m e n t i a c a r e Bruce, 2000; Cohen-Mansfield, Golander, & Arnheim, 2000). Similarly, there is growing concern that standardized measures for assessing outcomes may not detect those that are meaningful and significant to the person with dementia. For example, Bamford and Bruce (2000) discovered that input from persons with dementia had little in common with measures typically used to evaluate community services, and others have found considerable disagreement between how patients with Alzheimer’s disease and their proxies rated quality of life (Novella et al., 2001; Sands, Ferreira, Stewart, Brod, & Yaffe, 2004). Given these gaps and the growing focus on evidence-based care, the need to develop measurement tools which capture issues of personhood and subjective experience is emerging as a particularly important research priority (Bamford & Bruce, 2000; Merchant & Hope, 2004; Whitlatch et al., 2005). The only established tool that claims to have taken a personhood focus is Dementia Care Mapping (DCM) developed in the UK. It attempts to take the perspective of the person with dementia through the use of skilled observations and empathy. However, DCM was originally developed as an intervention tool (Bond & Corner, 2001; Brooker, 2005) and research is just beginning to emerge exploring its use as a measure of subjective quality of life in dementia (Fossey, Lee, & Ballard, 2002). Moreover, it relies upon observations from others rather than personal input by the person with dementia. Other relevant tools are currently under development (for example, Brod, Stewart, Sands, & Walton, 1999; Logsden, Gibbons, McCurry, & Teri, 1999; Whitlatch et al., 2005). How these tools compare to one another has not yet been examined. In summary, the importance of understanding the subjective experience of the person with dementia has been clearly established. There is a growing literature showing how persons with dementia experience significant loss, cope with these losses and try to sustain a sense of self even as their memory fails. However, further research is required to understand these experiences, particularly in relation to persons with more severe impairment, and to develop measures grounded in the perspectives of persons with dementia. Longitudinal research in this area is particularly needed to understand how these experiences change over time as the person becomes more impaired.

The interactional environment When taking the position that personhood is constructed through one’s interactions with one’s world, a focus on the living environment becomes critically important for conceptualizing and understanding personhood. This idea was initially introduced by Kitwood (1990) through his emphasis 127

dementia 6(1) upon ‘malignant social psychology’ which drew attention to how treatment by others contributed to the deterioration of the person with dementia. This second domain of inquiry, the interactional environment, retains this focus on the importance of one’s interactions with others, but extends it to recognize that personal relationships are only one aspect of the immediate environment within which the person with dementia interacts on a dayto-day basis. Other aspects such as the use of physical space and engagement in activities also provide interactional opportunities which can either foster or erode one’s sense of personal competence and uniqueness, and hence personhood. At first glance, there appears to be considerable research addressing these two aspects of interaction – the interpersonal and environmental. However, closer scrutiny suggests that the link to a personhood approach to care is less developed than one might initially assume. Within the interpersonal dimension, the importance of communication as a central aspect of relationships has been investigated extensively. As the dementia progresses, persons with dementia generally experience increasing deficits in their ability to communicate. The adverse impact of problematic communication on social interactions with others has now been well documented (for example, Hendryx-Bedalov, 1999, 2000; Richter, Roberto, & Bottenberg, 1993, 1995; Small, Geldart, & Gutman, 2000) and research in the fields of linguistics and communication studies has identified ways that caregivers might modify their language behaviour to enhance communication with persons with dementia (for example, Byrne & Orange, 2005; Kemper, Anagnopoulos, Lyons, & Heberlein, 1994; Ripich, Ziol, Fritsch, & Durand, 1999; Small, 2002; Small et al., 1998, 2000; Small & Gutman, 2002; Small, Gutman, Makela, & Hillhouse, 2003; Tappen et al., 1999). However, how this might impact on personhood is poorly understood. While there is research exploring the role of interlocutors in supporting (or undermining) the personhood of individuals with dementia (Ryan, Byrne, Spykerman, & Orange, 2005; Sabat, 2001; Small et al., 1998), the effectiveness of particular communication strategies as they relate to supporting personhood has yet to be fully explored. In addition to studies of communication between persons with dementia and their carers, research in the interpersonal domain has focused more generally on the relationship between persons with dementia and their family members and/or significant others, including professional caregivers. There is a massive body of literature in this area. However, as a means toward furthering an understanding of personhood in dementia, this research is limited. First, studies examining such relationships have traditionally focused primarily on the caregiving aspects of the relationship. This has tended to result in a narrow understanding of the relationship as 128

o ’ c on n o r e t a l . : pe r s on h o o d i n d e m e n t i a c a r e a one-way activity of the family member or formal caregiver providing help to the person with dementia. In relation to this caregiving activity, some research is emerging to suggest that a focus on personhood may guide the actions and approaches of family members (see, for example, Adams, 2002; Golander & Raz, 1996; Perry & O’Connor, 2002; Purves, 2006), but this research is exploratory and limited by sample and methodology. Furthermore – and somewhat ironically, given the professed focus on ‘interaction’ – research that has considered a personhood approach has failed to address the complexities of this notion as it influences the relationship. For example, how do family members and formal care providers negotiate the tightrope between insuring continuity of the personhood of the individual with dementia without essentializing or fixating this person’s identity and/or negating the impact of the disease process? Moreover, how does this focus on personhood impact the provision of care? On the one hand, it would seem intuitive that recognizing the personhood of the person with dementia would promote more positive interactions between carers and care recipients. However, while there is some support for this notion (Lintern & Woods, 2000), at least one study suggests that formal carers may be threatened by recognition of personhood in their ‘patients’ (Hallberg, Norberg & Erikson, 1990), and a second found that this approach could create increased stress in the work environment (Hogewoning-van der Vossen, 2004). A view of personhood that is grounded in interpersonal interaction has the potential to inform our understanding of the experience of dementia, not just for the person with dementia, but also for those in his or her social world. The importance of such understanding has prompted researchers (see, for example, Karner & Bobbitt-Zeher, 2006; Nolan, Ryan, Enderby, & Reid, 2002; O’Connor, 1995, in press) to suggest a shift in focus from person-centred care to relational or relationship-focused care. This obviously has implications for understanding both subjective experience and socio-cultural context, and again reiterates the necessity of examining the three dimensions in relation to one another. For example, Hellstrom, Nolan and Lundh (2005b) outline how awareness and sense of subjective self for the person with dementia is co-constructed within the spousal marital relationship. The second aspect of the interactional domain that is relevant to personhood is that of the environment, conceptualized here as including the use of physical space and activities. As early as the mid 1970s, researchers and professionals began attending to the importance of the physical space in relation to the behaviour of persons with dementia (Rowles, 1983). For example, a substantial body of knowledge regarding the planning, programming and design of Special Care Units (SCUs) for residents with dementia has been available for over twenty years (Brawley, 1997, 2001; 129

dementia 6(1) Cohen & Weisman, 1991; Day, Carreon, & Stump, 2000). However, this work is based on the understanding that the physical environment is potentially a therapeutic resource for promoting functional abilities and mitigating some of the behavioural problems in people with dementia (Day et al., 2000). As a result, when effectiveness of these environmental interventions has been examined, outcome measures have focused largely on problematic behaviours of those with dementia and/or staff reactions. Only more recently has the importance of place for promoting self-identity and personhood for persons with dementia begun to emerge as an important area for research and intervention (Chaudhury & Rowles, 2005; Marcus, 1995; Parker et al., 2004). Similarly, while research has suggested that activities may be beneficial for persons with dementia (Marshall & Hutchinson, 2001), there has been little research examining how the interactional opportunities afforded by involvement in meaningful activity influence personhood. New research is emerging (for example, Cohen-Mansfield et al., 2006; Phinney, 2006; Phinney, Chaudhury & O’Connor, in press) which identifies interesting potential and highlights the importance of pursuing this path. In summary, research exploring this second domain of inquiry is somewhat misleading. When organized into two main areas – interactions with others and interactions with environment – the first impression is that there has been considerable work done to explicate the interactional environment. However, closer scrutiny reveals the tenuous link of much of this research to personhood. Specifically, little research has actually turned attention to how personhood might serve as an outcome measure for evaluating the impact of changes in the interactional environment. Moreover, even less consideration has been given to understanding how notions of personhood influence interactions.

The socio-cultural context A broader vision of personhood and dementia recognizes the importance of context for shaping the experience of personhood and dementia. However, too frequently, understanding of context has been restricted to the immediate environment and has failed to embed subjective experiences and interactions into a broader socio-cultural context (Aranda, 2001; Cohen-Mansfield, 2000; Downs, 2000; Hulko, 2002; Innes, Archibald, & Murphy, 2004; Poveda, 2003). This can give the impression that the dementia experience occurs in a vacuum, ignoring the importance of socio-cultural values, norms, beliefs, and assumptions for shaping how this experience is interpreted, and responded to, by both afflicted persons and their social partners. Research is required into this third domain of inquiry, 130

o ’ c on n o r e t a l . : pe r s on h o o d i n d e m e n t i a c a r e the socio-cultural context, in order to move beyond the immediacy of personal and interactional experiences to identify, for example, the ways in which health policies, institutional cultures and practices, and sociocultural norms and values shape the experience of dementia and support or impede the implementation of personhood approaches to dementia. Attention to a broader socio-cultural context can take many forms. The most commonly referenced draws attention to the importance of race and ethnicity for shaping the dementia experience. Research clearly documents how cultural understandings of health and illness mediate the interpretation of disease symptoms and the status afforded to the ill person (Cohen, 1998; Dilworth-Anderson, Williams, & Gibson, 2002). However, with few exceptions (for example, Fukushima, Nagahata, Ishibashi, Takahashi, & Moriyama, 2005; McCabe, 2006; Smith & Kobayashi, 2002), little research has examined the experiences of dementia within diverse ethnic cultures from a personhood-oriented perspective. The growing body of research that has considered ethnicity, often within the caregiving context, has generally identified the importance of race and ethnicity for shaping the dementia experience and for explaining the use (or lack of use) of support services (for example, Dilworth-Anderson & Gibson, 2002; Forbat, 2003b; Hinton, Franz, Yeo, & Levkoff, 2005; Hinton & Levkoff, 1999; Holroyd, 2005; Janevic & Connell, 2001; Jones, Chow, & Gatz, 2006; MacKenzie, 2006; Montoro-Rodriguez, Small, & McCallum, in press; Valle, 1998). Simultaneously, this research recognizes the paucity of research in this area. In particular, the inability to differentiate between the importance of language as opposed to ethnic minority group membership per se within many of these studies has been identified as an issue (Daker-White, Beattie, Gilliard, & Means, 2002). While unquestionably important, to limit the focus of this domain of inquiry to an exploration of race and ethnicity is too narrow (Iliffe & Manthorpe, 2004). Similarly, to treat it as a fixed, homogenized variable is also limiting. Dilworth-Anderson, Williams and Gibson (2002) explicitly recognize the need to conceptualize culture more broadly as a set of shared symbols, beliefs and customs that shapes individual or group behaviours. This more general understanding promotes a more inclusive analysis that recognizes, for example, the importance of socio-economic status, gender and sexual identity as sources of group identity and cultural belonging. Within this understanding of culture, attention begins to also shift to notions of social location and positioning as critical for contextualizing the dementia experience. Research that attempts to situate experience within this broader socio-cultural context is just beginning to emerge in this area (for example, Hulko, 2004; Kontos, 2004). MacKenzie (2006), for example, argues that stigma and the way it affects people with dementia 131

dementia 6(1) and their carers from diverse cultural backgrounds in the UK must also be understood from a socio-economic standpoint, and not simply as ‘ethnic’ difference. A third lens for developing a broader socio-cultural context for conceptualizing the dementia experience incorporates a focus on organizational culture and its impact on personhood. Institutional ethnography (Smith, 1987) suggests that everyday experience is regulated by institutional practices and policies. There is agreement over the important contribution of institutional culture – defined here as the material and ideational aspects of an institution, including the values and beliefs that guide the actions of staff, allocation of resources, and architectural features (see, for example, Thorne, Kazanjian, & MacEntee, 2001) – in shaping the nature of services and the manner in which they are delivered (Gubrium, 1986, 1987; Traphagan, 2000). However, this understanding has not been systematically applied to understanding dementia care practices or identifying community and institutional practices and policies which support or impede implementation of personhood approaches to dementia care. A fourth, potentially more expansive way of understanding sociocultural context draws on ideas associated with social constructionism to recognize the importance of societal discourses, for shaping the dementia experience. This perspective suggests that at any given time, there are multiple and competing discourses, or storylines, available through which one can make sense of the world. Some of these are more dominant than others, meaning that the systems of values, beliefs and assumptions underpinning them may go without question. To develop a contextualized account of personhood in dementia, it is necessary to identify and interrogate the different storylines that are being used to construct the dementia experience in relation to their social, historical and political contexts. Research that takes this perspective is just beginning to emerge. For example, some research has focused on the influence of a biomedical discourse for constructing the dementia experience, suggesting that understanding dementia as a deteriorating disease sets expectations and responses that help shape personal experiences and interpersonal responses in particular ways (for example, Beard, 2004; Chatterji, 1998; Gubrium, 1986; Smith & Beattie, 2001). Further interrogation is required in order to explicate how other less taken-for-granted shared understandings contribute to, or detract from, a focus on personhood in dementia. For example, Basting’s (2003) analysis of the autobiographical accounts of persons with dementia hints at the importance of understanding how societal values of independence and usefulness help individuals interpret their experiences. Similarly, research by Husband (2000) found that the primary fears of people awaiting a diagnosis were related to how they 132

o ’ c on n o r e t a l . : pe r s on h o o d i n d e m e n t i a c a r e would be perceived by others and not the actual physical or cognitive losses. This research suggests the need to move beyond subjective experience and the immediate interactional environment to examine how common understandings of categories such as ‘usefulness’, ‘autonomy’ and ‘independence’ are constructed and conveyed through everyday interactions and how these are used to shape subjective experience (see, for example, Thornton, 2006). Moreover, interesting conceptual questions are beginning to emerge. For example, supporting the earlier mentioned shift to considering relationship-centred care rather than person-centred care, work by Tsai (2001) challenges the very congruence of attention to ‘personhood’ or person-centred care within cultures which prioritize notions of interdependence, community and family. Similarly, Forbat (2003b) raises interesting questions regarding how a westernized framing of research inadvertently results in a failure to connect with people from minority communities. Such research warrants further exploration. This third domain of inquiry, then, can be conceptualized in a variety of ways, each drawing attention in a different way to the importance of positioning the dementia experience within a broader context. Context may be conceptualized as including, for example, race and ethnicity, social location, organizational practices and policies, and societal discourses. With few exceptions, it is only within the past five years that research has begun to extend into this domain and recognize the need to embed lived experience into a broader socio-cultural context. How this will be done and what it will look like is an emerging area of research.

Conclusion The notion of personhood in dementia offers exciting opportunities for broadening understanding of the dementia experience. Although the notion is somewhat elusive, and it is difficult to articulate or operationalize what personhood actually is, it nevertheless remains an intuitively appealing concept. This is largely because it so clearly challenges dominant ways of understanding and constructing the dementia experience. The proposed conceptual framework develops a structure for organizing and developing research into a personhood approach to dementia care. It responds to the identified need for a multi-dimensional, interdisciplinary and comprehensive vision of dementia care (Downs, 2000). By positioning personhood as intersecting these three domains, a more holistic conceptualization is facilitated, and it is easier to understand both what has already been done as well as identify where further elaboration and development is required. While research is emerging in each of these domains 133

dementia 6(1) already, this framework recognizes that these domains overlap and the interconnections across the different domains require further exploration and development. In particular, research is required that will transcend the borders between the personal, interactional and socio-cultural domains, to recognize the connections between personal experience and how it is socially constructed, both within one’s immediate environment and within a broader societal context. Such work will depend on the expertise and collaborative synergies of researchers from a variety of disciplines and perspectives. Notes

1. Conceptual framework developed by the Centre for Research on Personhood in Dementia research associates: B. L. Beattie, H. Chaudhury, M. Donnelly, E. Drance, P. Graf, A. Martin-Matthews, D. O’Connor, J. Perry, A. Phinney, B. Purves, J. Small and A. Smith. 2. The original research group consisted of A. Carswell, J. Graham, A. MartinMatthews, N. Keating, D. O’Connor, J. Perry, B. Purves and J. Segal. 3. For a list of participants please visit http://faculty.arts.ubc.ca/graham/index.htm 4. Four researchers affiliated with the newly formed Centre for Research on Personhood in Dementia (CRPD) conducted site visit to the UK as part of a Canadian Institute for Health Research (CIHR) International Opportunity Grant in July, 2005. References

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is the Director of the Centre for Research on Personhood in Dementia, and Associate Professor in the School of Social Work and Family Studies, University of British Columbia. Her research interests focus broadly on understanding the dementia experience as a dyadic, relational process and examining the interface between the private experience of caring and the use of formal support services. She is particularly interested in understanding how the personal experiences of family carers and persons with dementia are shaped by broader socio-cultural contexts. Address: School of Social Work and Family Studies, University of British Columbia, 2080 West Mall, Vancouver BC, V6T 1Z2, Canada. [email: [email protected]]

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o ’ c on n o r e t a l . : pe r s on h o o d i n d e m e n t i a c a r e is an Assistant Professor at the School of Nursing, University of British Columbia. Her primary research focus is exploring the everyday lived experience of dementia from the perspective of the person with the diagnosis. The focus of her current work is on how meaning is manifested in the dementing body and the interrelationship of embodiment with issues of identity and aging. An important purpose of this work has been to develop specific observational methods using digital video technology, which ultimately will permit a more in-depth and rigorous examination of the experiences of persons with dementia across the illness trajectory. A N D R E S M I T H , Assistant Professor, Department of Sociology, University of Victoria, is a sociologist with a broad interest in understanding illness in relation to social, cultural, and institutional contexts. In particular, his research has focused on three main areas: the process of diagnostic disclosure in dementia assessment and its impact on social relations within the family of diagnosed individuals; the ways understandings of dementia are shaped by cultural values and inter-generational dynamics within visible minority families; and the impact of regulatory environments and organizational cultures on dementia care practices. J E F F S M A L L is an Associate Professor in the School of Audiology and Speech Sciences, University of British Columbia. His research investigates factors that influence the quality of communication between persons with Alzheimer’s disease (AD) and their caregivers. He is particularly interested in how caregivers accommodate their language behaviour to the perceived needs of the person with AD, and the impact these accommodations have on communication and functional outcomes. B A R B A R A P U RV E S is Assistant Professor in the School of Audiology and Speech Sciences, University of British Columbia. Her primary research interest is the area of dementia and personhood, and explores the interaction of conversation and disease process in family life. She is concerned with understanding the role of everyday conversation in the maintenance of personhood of individuals with AD or related disorders throughout the disease process and, ultimately, with identifying ways in which conversational practices that support personhood of these individuals can be promoted in community and institutional settings. J OA N N P E R RY is Associate Professor at the School of Nursing, University of British Columbia. Her research program has two main branches: family giving care to older adults with dementia and communication between persons with advanced dementia and nurses. Current research focuses on exploring family experiences with caregiving in culturally diverse populations and developing communication interventions for family caregivers and for nurses and nursing assistants. E L I S A B E T H D R A N C E is Physician Program Director, Providence Health Care; Regional Psychiatrist, Vancouver Coastal Health Authority; and Clinical Assistant Professor, Department of Psychiatry, University of British Columbia. Her research interests include person-centred dementia care in long term care; implementation of the Eden Alternative philosophy in long term care; quality of life for elders living in long term care; and quality of work life for staff working in long term care. M A RT H A D O N N E L LY is an Assistant Professor and is Director of the Division of Community Geriatrics, Department of Family Practice and Director of the Division of Geriatric Psychiatry, Department of Psychiatry at the University of British Columbia. She is a geriatric psychiatrist clinically working in an interdisciplinary outreach team at Vancouver Hospital. She has chaired the development of best practice guidelines for services in mental health in BC and ECT in BC, as well as guidelines for special population primary mental health collaboration. She has ALISON PHINNEY

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dementia 6(1) worked on interdisciplinary research groups in both exercise and older women and now personhood and dementia. H A B I B C H AU D H U RY is Assistant Professor in the Department of Gerontology, Simon Fraser University. His primary research interest lies in two areas: therapeutic settings for people with dementia and place-based reminiscence therapy. The first looks at creation of a responsive physical environment for dementia care and its relationship with organizational and social dimensions. The second area explores recollection of ‘homes’ by people with dementia and therapeutic potentials of place-biography for older adults, especially people with dementia in preservation and rediscovery of selfhood. LY N N B E AT T I E is Professor, Division of Geriatric Medicine, University of British Columbia. She has a general interest in clinical geriatrics with a particular interest in dementia care, especially diagnosis and treatment of disorders such as Alzheimer disease. She is the former Director of Clinic for Alzheimer Disease and Related Disorders at UBC Hospital which provides a rich clinical setting for conducting research.

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