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Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
1
‘The Problem with Leonard’: A critical constructionist view of need-driven
dementia-compromised behaviours
Sharon D. Koehn Ph.D. (CORRESPONDING AUTHOR) Research Associate, Centre for
Healthy Aging at Providence, 4865 Heather Street, Vancouver, B.C. V5Z 0B3; & Department of
Family Practice, University of British Columbia
Email: skoehn@providencehealth.bc.ca; Tel: (604) 876-7112 x605; Fax: (604) 876-7113
Jean-Francois Kozak Ph.D. Research Director, Centre for Healthy Aging at Providence, 4865
Heather Street, Vancouver, B.C. V5Z 0B3; & School of Population and Public Health,
University of British Columbia.
Email: jkozak@providencehealth.bc.ca; Tel: (604) 876-7112 x606; Fax: (604) 876-7113
Elisabeth Drance MD, FRCPC. Medical Co-director, Older Adult Program, Vancouver
Community Mental Health Services, 200-520 West 6th Avenue, Vancouver, B.C. V5Z 4H5; &
Dept of Psychiatry, University of British Columbia.
Email: edrance@telus.net; Tel: 604-220-3848; Fax: 604-874-7661.
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
2
Acknowledgements
We would like to thank ‘Leonard’s’ family for their tremendous support of this paper—we hope
it will contribute to a better understanding of his needs. Thanks are also due to our funders, the
Tapestry Foundation for Health Research, and to our anonymous reviewers whose thoughtful
comments have benefited this manuscript tremendously.
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
1
Abstract
This critical constructionist case study of ‘Leonard,’ a man with frontotemporal dementia living
on a special care unit predominantly populated by people with Alzheimer’s Disease and related
dementias, explores how healthy others’ perceptions of the prevailing physical and psychosocial
environment were influenced by Leonard’s behaviour which, in turn, was influenced by people’s
perceptions of him as a ‘problem.’ Data were obtained through participant observations,
individual interviews with staff and residents, and focus groups with family members and
nursing staff. Leonard’s ‘needs-driven dementia compromised’ behaviours are not recognized as
such by many of the healthy others with whom he co-creates his psychosocial environment;
rather he is constructed as deviant, which undermines his selfhood as well as his quality of life.
Education of staff and family members as well as broad organizational change is needed to
address the issues underlying the problems for which Leonard is blamed but instead arise largely
from the environment within which Leonard is situated.
Keywords
Critical-constructionist methodology; frontotemporal dementia; long-term care; needs-driven
dementia-compromised behaviour model; physical and psychosocial environments—special care
units.
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
2
‘The Problem with Leonard’: A critical constructionist view of need-
driven dementia-compromised behaviours
Introduction
Increasingly, many of the behavioural symptoms experienced by older people with dementia
living in residential care are understood as a response to unmet needs (Algase et al., 1996;
Kovach, Noonan, Schlidt, & Wells, 2005; Penrod et al., 2007; Whall & Kolanowski, 2004).
These unmet needs often arise as the result of sub-optimal physical and psychosocial
environments, in addition to being created by biological factors such as the dementia itself, co-
morbid physical, psychiatric illness, or medication issues. This understanding has led to a push
toward modifying both the physical and psychosocial environments to address these unmet needs
and optimize the quality of life for people with dementia (Cohen-Mansfield & Mintzer, 2005;
Orrell et al., 2007).
Dementia care units with physical design features such as privacy and personalization in
bedrooms, residential character and an ambient environment that residents can understand, have
been linked to positive outcomes. These include reduced aggressive and agitated behaviour and
fewer psychological problems among residents (Zeisel et al., 2003) and ‘increased use of the
activity spaces, increased social interaction among the residents, and more interactive than
assistive behaviour between the staff and residents’ (Kovach, Weisman, Chaudhury, & Calkins,
1997, p 99), for example.
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
3
The limitations of physical design modifications in isolation have nonetheless been recognized.
For example, a decentralized nursing home design that scored positively on an environmental
assessment and was considered more ‘homey’ by staff, did not succeed in satisfying the
residents’ unmet needs as evinced by minimal changes in their behavioural responses (Schwarz,
Chaudhury, & Tofle, 2004). These authors concluded that factors influencing the psychosocial
environment, such as an organizational commitment to the provision of appropriate activities and
staff stability and adequacy, both in terms of staff ratios and training, are ‘crucial for fuller
realization of the potential of a household design.’ Similar to studies that have reported the
significance of the physical environment, features of psychosocial environments have thus been
found to have profound psychological and emotional effects on individuals with cognitive
impairment (Werezak & Morgan, 2003). For example, Morgan and Stewart (1997) describe five
areas of need in relation to the psychosocial environment for residents with dementia living in
residential care: (a) stimulation and meaningful activity, (b) human contact, (c) safety and
supervision, (d) individualized care and (e) flexibility. Thus we see a parallel growth in the
literature on the role that the psychosocial environment may play in both the quality of life of
people with dementia and in meeting the unmet needs that give rise to challenging behaviours
(Cohen-Mansfield & Mintzer, 2005; Low, Draper, & Brodaty, 2004; Morgan & Stewart, 1997)
.
The Need-Driven Dementia-Compromised (NDDC) Behaviour model, is a holistic model for
understanding challenging behavioural symptoms (e.g. passivity, repetitive vocalisations,
aggressive behaviours) in persons with dementia in terms of the interaction of background and
proximal factors (Whall & Kolanowski, 2004). Background variables include neurological
factors, cognitive abilities, health state and the individual’s psychosocial history. The more
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
4
immediate proximal factors encompass the individual’s current physiological and psychological
need states, as well as both the physical and psychosocial environments. This comprehensive
approach represents a significant departure from models that attempt to ‘manage problem
behaviour.’
Here we present a case study of a man we call Leonard,
1
a resident of a Special Care Unit (SCU)
or ‘neighbourhood’ in a nursing home. Leonard is one of a small minority of residents in the
neighbourhood with frontotemporal dementia; the majority of the twenty-one residents have
diagnoses of probable Alzheimer’s disease, vascular or mixed dementias.
Alzheimer’s Disease and related dementias are characterized as cognitive disorders, with early
symptoms of ‘short-term memory loss, word-finding difficulties, and visual spatial problems’
and, as the disease progresses, ‘difficulty managing daily activities primarily due to cognitive
deficits’ (Merrilees & Miller, 2005, p 1). Behavioural symptoms such as ‘apathy, motor
disruption, aggression, irritability, appetite changes, and sleep disturbances’ (ibid.) do not
emerge until approximately 48 months into the disease. By contrast, it is the behavioural
symptoms of behavioural variant frontotemporal dementia
2
that are apparent from the outset and
compromise the person’s ability to manage day to day activities; memory loss occurs at later
stages and is less pronounced. These symptoms can be highly disruptive to families and others
responsible for their care (Hall, 1999). They include altered personality, apathy, disinhibition,
hyperorality (e.g. carbohydrate cravings), stereotypic ritualistic behaviour, impulsivity, socially
inappropriate behaviour or ‘misconduct’ (e.g. theft, public masturbation), diminished empathy,
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
5
emotional blunting and lack of insight (Bathgate, Snowden, Varma, Blackshaw, & Neary, 2001;
Bozeat, Gregory, Ralph, & Hodges, 2000; Merrilees & Miller, 2003, 2005).
As is typical for frontotemporal dementia, Leonard is much younger than most other residents
and, superficially, he appears to be cognitively intact. Yet Leonard struggles with many of the
changes characteristic of behavioural variant frontotemporal dementia, described above, and thus
has a distinctive mode of interaction with the environment of the neighbourhood that sets him
apart from other residents. Unfortunately, there is scant research on frontotemporal dementia as
compared to Alzheimer’s Disease and ‘no systematic evaluations of appropriate environmental
and behavioral [sic] interventions’ for this group (Merrilees & Miller, 2003, p 163). Although
each resident of the SCU differs in their presentation of symptoms relative to various background
factors (e.g. personalities, life histories, ethnocultural and linguistic background, etc.), the
cognitive and behavioural differences between these types of dementia are considerable and
strategies to address environmental challenges may not be suitable for both. The current
literature on environmental modifications for dementia does not address this diversity, but tends
to be oriented instead to the majority of people diagnosed with dementia who have Alzheimer’s
Disease and related dementias (Hall, 1999). Here we begin to address that gap.
The construal of Leonard’s behavioural responses by healthy others and the ways in which they
understand and relate his influence on both the social and physical environments is the subject of
this paper. Critically examining ‘the problem with Leonard’ enables us to discern the key factors
in the physical and psychosocial environments that intensify, through a co-creative process,
existing dementia-compromised behaviours, particularly those associated with behavioural
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
6
variant frontotemporal dementia. In so doing, we believe it illuminates the interactive process
between background and proximal factors—specifically those associated with diverse
environmental features—that contribute to challenging behavioural symptoms exhibited by
people with dementia living in care homes. Finally it points to the agency of people with
dementia and the integral role they play in co-creating the physical and psychosocial
environments in which they live.
Design and Methods
The present case study arose from a larger mixed methods study underway on the role of
physical and psychosocial environments in coping with NDDC behaviours in a dementia SCU or
‘neighbourhood’ of a long-term care home. The study was designed around planned
modifications to the dining and patio areas. The case study presented here emerged from the
qualitative component of the study.
Consistent with the general understanding of SCUs as long-term care residences with specialized
features of physical and organizational environments that minimize behavioural ‘problems’
associated with dementia (Foley, Sudha, Sloane & Gold, 2003; Cioffi, Fleming, Wilkes, Sinfield
and Le Miere, 2007), our research site is a secured neighbourhood housing 21 residents with
NDDC behaviours. All nursing staff are licensed practical nurses (LPNs) with additional
dementia care training and dementia-sensitive programming is provided by a rehabilitation
assistant and a music therapist. Modifications to the physical environment of the unit were
constrained by its location in a more traditionally medical building with long corridors and an H-
shaped layout, although residents have their own bedrooms decorated with their personal effects.
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
7
The renovations sought to increase the homelikeness of common spaces with modifications to
dining, bathing and patio areas. These modifications and the changes associated with them will
be reported in more detail elsewhere.
Conceptual Framework
The critical-constructionist approach adopted in this paper is concerned with how various
individuals or ‘actors’ (e.g. residents, family members, staff.) in a given environment ‘are
involved in the construction of the meaning of phenomena’ (Latimer, 2008, p 154), such as the
provision to and receipt of care by a person with dementia. Contextual features, such as the place
where this occurs (e.g. home versus care facility) and organizational cultures and policies, also
play a role in shaping these constructions. Typically, realities are co-constructed with others
through interaction: some constructions are thus held by many individuals and even across
cultures. People can construct worlds together or against each other, and what are viewed as
‘good’ or ‘bad’ interactions can be seen as a function of how well different actors interpret and
present phenomena through their constructions, which in turn need to be understood in terms of
who (or what) benefits from them.
A growing number of researchers are challenging the prevailing view of persons with dementia
as research objects and recognizing their value as active subjects with invaluable perspectives on
their experience (Cotrell & Schulz, 1993). In so doing, they attribute some degree of agency and
hence selfhood to all persons with dementia. Sabat (2001) identifies three types of Self in
relation to dementia: Self one is expressed by first person pronouns; Self two relates to physical
and mental attributes; and Self three is our socially presented selves or personae (e.g.
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
8
teacher/engineer, parent, child, colleague, friend, etc.). Of these, the third is most strongly
determined by the psychosocial environment. This social constructionist view maintains that the
various personae that we project to the world are mutually constructed with at least one other
person. For example, the biological fact of being a parent may or may not permit an individual to
assume the personae of ‘parent’; a child (biological or adopted) who acknowledges that
individual as a parent is also necessary. Sabat (2001) thus argues that persons with Alzheimer’s
Disease require the cooperation of healthy others in order to construct and manifest a particular
self in social situations. Yet the healthy person views that experience through their own lens
which is, in turn, influenced by many things, one of which is the social capital available to them
in a given context. Thus it is important to situate contributors to the psychosocial environment—
residents, visitors, and staff alike—relative to the social capital to which they have access in that
context. In instances of conflict, such as when the resident exhibits NDDC behaviours in an
interaction involving another person, the outcome is most likely to be defined by the person with
the most social capital.
In this sense constructions are not benign, an observation in alignment with a key premise of
Critical Theory, namely that ‘all thought is fundamentally mediated by power relations that are
socially and historically constituted’ (Kincheloe & McLaren, 1994, p 139). While ‘constructions
are not more or less ‘true,’ in any absolute sense, but simply more or less informed and/or
sophisticated’ (Guba & Lincoln, 1994, p 110), Critical Theorists such as Bourdieu and Foucault
have argued that individuals with the greatest ‘social capital’ tend to reproduce social realities
that favour their own interests and silence the most vulnerable (Lechte, 1994; Faubion & Marcus,
2008; Miller, 2008). Here ‘social capital’
3
refers to the economic, social and symbolic power
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
9
held by individuals and reproduced by institutions and practices such as biomedicine (Lock &
Scheper-Hughes,1990; Siisiäinen, 2003). Power is linked to knowledge, which may be very
context-specific. Thus in the SCU environment, LPNs have specialized, largely biomedical,
knowledge on which residents and their family members depend. An SCU can also become a
‘tool of knowledge’ and hence power in the sense that a small number of clinical staff are
responsible for the surveillance of a relatively large number of residents (Lechte, 1994). This
said, they are themselves constrained by the relative power of the biomedical hierarchy
4
and
administrative and organizational structures.
Data collection and Analysis
The qualitative component of our overall study was necessitated by our desire to understand if,
how, and in relation to which specific environmental features, the residents’ NDDC behaviours
changed subsequent to the renovations to the neighbourhood. Our ethnographic approach to the
study of the SCU involved an extended period of fieldwork and the use of multiple methods to
attain data saturation in order to achieve theoretically and methodologically sound results. These
included (1) 77 hours of participant observations before and after the renovations; (2) two sets of
focus groups with (a) all nine LPNs who regularly staff the unit and (b) family members
5
(the
first round within 1-3 months after completion of the renovations and the second round at 10
months); (3) one-to-one interviews with non-LPN staff (including employees, contract staff, and
companions hired by family members); and (4) a series of one-to-one interviews with three
residents.
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
10
Sampling for this study was purposive. All residents who were capable of speech, plus staff,
volunteers and visitors of the special care neighbourhood were eligible to participate pending
appropriate consent, although we did not interview casual staff who had limited knowledge of
the neighbourhood or its residents. Only those residents for whom proxy consent by a Substitute
Decision-Maker could be secured were deemed eligible. All participants or their proxies
consented separately to involvement in the study as interviewees and as the subjects of
observation.
While staff were recruited directly, we were only able to contact families and other Substitute
Decision-Makers for consent on their own behalf or as proxies for a resident if they agreed to
release their contact information to the research team after having had the study explained to
them by a staff member at the residence. Ethical approval for the study was secured from the
Institutional Review Board of the Research Institute associated with the health care provider
responsible for the long-term care residence in which the study was situated.
Data pertaining to Leonard emerged unbidden in all of the focus groups and one-to-one
interviews with staff and family members, but Leonard himself was not formally a part of our
study as his family declined involvement. This was a position we respected and we did not
record any observations of his behaviour and deleted his verbal contributions when we were
taping other residents. Despite his exclusion from data collection, however, the researchers came
to know Leonard quite well. Throughout the course of the thirteen months that we spent in the
neighbourhood, we formed close relationships with many of the research participants and people
such as Leonard who engaged with us of their own accord. The depth of relationships formed in
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
11
ethnographic studies enables researchers to make linkages between different sources of data and
to identify patterns therein (Wray, Markovic, & Manderson, 2007). It also provides a contextual
backdrop against which interpretations of the interviews and focus groups can be confidently
made (Campbell, 1998).
Thus, although the data we present were collected from participants from whom we had
informed consent, Leonard was very much part of the environment on which staff and family
members commented. To delete any reference to his actions, which emerged as a dominant
theme throughout the data, would have been to distort the findings regarding the physical and
psychosocial environment completely. We were thus compelled to go back to Leonard’s family
members to seek their consent to publish these findings, which they generously provided.
All interviews were audio-taped and transcribed. These data were imported into Atlas.ti 5.2.0,
which permitted the systematic exploration of themes. The program also facilitated comparison
of themes across groups (staff, family and residents). The majority of thematic codes, such as
‘the Problem with Leonard,’
6
emerged inductively from the data. Some predominantly inductive
codes reflected the researchers’ critical constructionist perspective (e.g. lived experiences of
dementia; administrative and policy support). We also employed some deductive codes to
capture environmental features such as specific locations in the neighbourhood and constructs
developed in previous studies such as. familiarity/homelikeness (Sloane et al., 2002), and
optimal stimulation (Morgan & Stewart, 1997). Text segments were thickly coded to reflect their
relationship to multiple themes allowing the exploration of co-occurrences among them. Here we
report only on the text coded as ‘the Problem with Leonard’ and co-occuring themes therein. In
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
12
our analysis we sought to capture both the manner in which individuals construct their realities,
which arise both from their phenomenological experiences and their interactions with others, as
well as the sources of power that constrained those constructions, in accordance with our critical
constructionist paradigmatic stance.
Results: Framing ‘Leonard’
In each of the personal and collective interviews that we conducted with staff and family
members, Leonard’s NDDC behaviours arose as a dominant theme. Three types of behaviour
identified in the literature on behavioural variant frontotemporal dementia were noted by our
participants: (1) compulsive food seeking and excessive eating (particularly for sweet foods); (2)
impulsivity and hoarding; and (3) selfishness or the loss of the ability to empathize with others.
7
(1) Compulsive food seeking and excessive eating
One of the staff members commented on both the nutritive value and the calming influence of
readily available snacks for dementia residents, many of whom cannot consume a full meal:
Something I think that really affects behaviour issues as well, … is having available food
for people to be eating all the time because a lot of the times people are just hungry. …
Sometimes just giving them a sandwich is all they need to just kind of relax and to focus
on something to decrease their level of agitation (staff interview, 23 January 2008).
Yet, she remarked, the fridge was often empty, even when food had been set aside for specific
residents. This matter was also mentioned by nursing staff and was observed on several
occasions in our field notes.
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
13
Nursing staff traced the problem back to Leonard’s propensity to eat all of the food in the fridge
and freezer and complained that their strategy of locking the fridge was a defeat in terms of the
goal of making the dining area homier for residents, family members and others who wished to
access the fridge for themselves or residents between meals.
Vera Actually, one thing I don’t like is the lock on the fridge - that’s my pet peeve!
[laughs]. I cannot stand it, because at home we don’t have a lock on the fridge . . .
Estelle Yeah, but there is a reason there
Vera I know, but, we all want to eat ice cream all the time, so, . . .
Estelle I agree with what you’re saying, but the biggest picture of it, everybody
deserves to have some kind of refreshment.
Vera So that’s why we need two kitchens: one here and one somewhere else (Staff
focus group, 26 October 2007).
Family members also commented on how Leonard devoured their family members’ treats and
other food:
Lisa They had to lock [the fridge] up because [Leonard] will drink all the milk and
all the orange juice and then go in the freezer.
Amy Yeah I think they just locked it.
Lisa Well they do but they don’t always lock it. And it’s unfortunate.
Karen He takes my Mom’s candy, and chips and cookies. Like if I take her in extra
food because I always worry about her eating, he just comes into her room and takes it.
Mandy Or I left my lunch there one day and came downstairs for awhile and it was
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
14
gone.
Karen Oh yeah, everything’s always gone (Family focus group, 3 December 2007).
Lisa I don’t know how [Leonard] can eat so much
Mandy Well it’s showing signs on him, having all that food
Lisa Well you know he can continue eating and eating and drinking milk, and you
know those little creamers for coffee, I mean he’ll go and empty six of them into his cup
and then he’ll ask for milk on top of it, you know, and the staff, you know they’ve tried
to control it of course and they have the fridge and everything locked, but I mean this is
what he wants, and so when he comes and asks for milk of course I’ll give him some
(Family focus group, 11 June, 2008).
Staff also wondered if Leonard’s voraciousness had resulted in an observed increase in the
tendency for residents to hoard perishable foods, such as milk, outside of the fridge, which
clearly presents a health hazard.
(2) Impulsivity and hoarding
Food isn’t the only thing to which Leonard helps himself indiscriminately. Research staff have
been asked by the rehabilitation assistant to ‘guard’ baking ingredients while she went to seek
out participants in a baking activity lest Leonard remove them. Research team members have had
their notebooks appropriated into his pile of newspapers and scrapbooks that he alternately
carries around with him and spreads all over a large table in the lounge. While Leonard is aware
that what he has taken is not his, it appears that he cannot control the impulse to take it. This type
of hoarding is characteristic of people with frontal lobe dementias.
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
15
Again, the stories of both LPN and non-LPN staff and family members converge to reveal how
Leonard is driven to help himself to anything in sight, even pictures on the walls:
We bring him down for the games like for the shuffleboard or for entertainment and all
that and I’ll, you know, I’ll take him back with Harvey, I say I’m going up to [the
neighbourhood] so I’ll take Leonard back . . . [and] on the way, he will take everything
off the wall. He’ll take flowers, or anything, he’s taking it, he will not listen to me; . . .
when I tell him to put things back he’ll put it back but he’s already got another one! And
it just keeps going, you know (Lisa, Family focus group, 11 June 2008).
The companion of another resident told us that he hides his own belongings in his client’s room
prior to leaving it because Leonard will invariably come in while they are absent and take
newspapers and other items from the table in the resident’s private room. Family members are
similarly frustrated when their efforts to ‘normalize’ the resident’s life by bringing in
newspapers, paper and pens, etc. are thwarted by Leonard who impulsively incorporates them
into his hoard. Family members have tried distracting him by bringing him papers of his own,
and a rehabilitation assistant set up a rummage box for him in the lounge area where he
frequently spends time: all to no avail.
Again, the alternative of locking the doors to the residents’ rooms for much of the day detracts
from the hominess of the environment and creates unmet needs in other residents who wish to
access their rooms, but cannot manage keeping and using a key. This in turn gives rise to
resident agitation and sometimes to toileting accidents when residents cannot access their own
bathrooms. Conversely, unlocked doors can and do result in heated resident confrontations when
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
16
wandering residents indiscriminately enter another person's room and/or attempt to hoard the
belongings of others. Since Leonard waits until the room is vacant, his forays into others’ rooms
are seen as more deliberate.
Shortly after the renovation of the common dining area, staff reported that they felt the change
from an institutional to a homier atmosphere had positively influenced Leonard’s acquisitive
tendencies, at least in that area:
Estelle As far as the homelikeness, I mean, I find it very interesting because, I mean,
I seem to be always talking about [Leonard] who would hoard things, take things,
because he felt he was entitled to them or, it, I, you can’t even justify with him and, I’ve
noticed not one thing has moved out of that room
Vera Exactly, you’re right.
Estelle Which is, I mean, very unusual. Everything has stayed where it was put,
where it is. So that says to me that he values that (Staff focus group, 26 October 2007).
Notably, this quote and others reveals a tendency on the part of staff to assume that Leonard’s
actions are calculated, thus rendering him more culpable for his appropriation of other people’s
property and other perceived misdemeanors. A non-LPN staff member pointed out that while
residents with Alzheimer’s Disease type dementias also took things from other residents’ rooms,
they did so out of confusion associated with their illness, as compared to Leonard who ‘knew
what he was doing’ (Staff interview, 28 January 2008). Family members commented that
Leonard ‘puts a damper on a lot of things on that floor, you know, he’s almost too aware’
(Family focus group, 3 December 2007). They described how he would watch and wait for the
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
17
LPN to leave and then immediately try the lock on the freezer because ‘he is extremely clever …
He’s on the ball’ (Lisa and Kay, Family focus group, 11 June 2008). A family member further
commented that one of the LPNs had speculated that Leonard’s sexual harassment of a female
resident, on which we expand momentarily, may be strategic: ‘One of the nurses said to me
‘Don’t overlook the fact that he might be doing that just to get off this floor’’ (Kay, Family focus
group, 11 June 2008).
(3) Loss of empathy
Leonard’s degree of awareness and capacity to manipulate his environment are clearly much
greater than the majority of residents living in the neighbourhood. In combination with a muted
sense of empathy for others’ needs and preferences, and the intensity with which he performs
particular tasks, Leonard often acts in a way that can be construed as selfish or controlling. These
behaviours can also be upsetting for other residents. Most commonly, problems were identified
with respect to Leonard’s control over the TV, both in terms of which programs were on and the
volume.
Staff identified noise as one of the key features of the physical environment that contributed to
agitation in the neighborhood. High noise levels and music that are too stimulating, or programs
that involve a lot of talking, seem to increase stress levels for the residents, often triggering
anxiety among them. In our discussions of environmental triggers of need-driven behaviours,
different groups of staff would repeatedly come back to Leonard’s control of the TV as the
source of the problem:
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
18
Sam Well some of them here . . . [Leonard] is deaf.
Jane I know, he’s the one that puts it loud.
Sam He wants to put it loud and the others, you know, it’s just a cycle of, you
know, and he’s the one that controls the TV (LPN focus group, 22 January 2008).
Alternatively, he will turn the volume off entirely, which can trigger disputes or unfairly deprive
other residents of more suitable programming over which they have no control:
Sophie Last week, [an]other resident was yelling like ‘Where’s the volume, I can’t
hear it? Where’s the volume?’ so she went and, and started pressing the wrong button
and the volume was like, we were running from down there and like what happened
here? It was all the way high!
Bill And if you put it on a program or we’ve set it to a movie it would be
changed to the programming that is to the liking of [Leonard]. … So if it was, say, on
any type of show that somebody is there before, he’ll come after, and change it…. And
everyone just sort of sits and goes along with it
Interviewer So most people do go along with it, don’t respond to it?
Bill I don’t know if they know what to do.
Family members have similarly noted that Leonard’s choices of programming are not typically
suitable for other residents. In our second round of focus groups interviews, staff were hopeful
that a new TV with no remote control would solve the problem because Leonard had not yet
discerned the location of the control panel. On the other hand, they noted that without this source
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
19
of stimulation, he was becoming bored to which they attributed his increased demonstration of
sexual disinhibition on the neighbourhood.
Conversely, however, Leonard is also instrumental in the generation of positive interactions
among residents. One family commented on how Leonard assumed the role of an older brother
when another male resident was having a hard time settling in:
Amy: Leonard was very good to him, he’d come in for every meal for him, and
everything like that.
Mandy: He’d go knock on his door (Family focus group 3 December 2007).
Mandy: He has been really kind bringing him newspaper or, bringing him ice cream and
stuff like that (Family focus group, 11 June 2008).
Thus while his ability to empathize with other residents’ needs may be attenuated, his own
construction of himself as an ‘ambassador’ of the neighbourhood—most clearly demonstrated in
his flattering speech at the opening ceremony of the new dining area—can, with encouragement,
compensate for this loss.
Discussion
Leonard’s gift to decision-makers responsible for long-term care is the insight his challenges
provide to an understanding of the interactive components of the psychosocial and physical
environments and how they contribute significantly to the behaviour of people with various
forms of dementia. Our critical constructionist approach facilitates an understanding of the role
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
20
that education, organizational context and culture and resource issues play into the creation of
this psychosocial environment and the attitudes that drive it.
1. Constructing and de-constructing selves
Leonard demonstrates the importance of focusing on the type and severity of the dementia, or
background factors per the NDDC Behaviour model (Whall & Kolanowski, 2004; see also Hall,
1999). As a person with behavioural variant frontotemporal dementia, he is better able to
articulate and maintain a socially constructed identity as a competent and engaged member of the
neighbourhood than the majority of other residents in large part due to the distinct symptoms of
his dementia. To illustrate, let us consider the concept of ‘optimal stimulation and meaningful
activity,’ identified by Morgan and Stewart (1997) as an essential component of the psychosocial
environment. Leonard’s level of cognition and ability to manipulate the TV where others could
not, gave him the opportunity to access shows that were meaningful and optimally stimulating
for him, but not for most other residents for whom the programming was inappropriate. With
limited ability to control the TV themselves, the other residents were at a distinct disadvantage
and the probability of withdrawal or agitation may have been increased.
To some degree, it is fair to say that, at times, Leonard’s behaviour is ‘calculated’ with the caveat
that such ‘indicators of relative well-being,’—as Kitwood (1997) understands them—are relative
to his understanding of his environment and his place in it. Thus he is also capable of acting
‘reasonably,’ as demonstrated by his welcoming behaviour towards new residents and the fact
that his hoarding of items from the dining area appeared to stop after the renovations, perhaps
indicative of his appreciation of the changes.
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
21
Leonard’s social capital, while potentially greater than other residents, was nonetheless
considerably diminished relative to staff and family members who ultimately controlled the TV.
Depriving Leonard of the ability to access the control panel in order to benefit the majority of
residents has decreased Leonard’s opportunities for optimal stimulation and, as Kovach (2005)
has argued, ‘failure to meet the needs of people with dementia affects the person with dementia,
care factors, and contextual factors. Cascading effects occur in which not meeting the original
need results in new needs and behavioural symptoms.’ Some staff members demonstrated such
insight into Leonard’s unmet needs when they suggested that the boredom resulting from his loss
of control over the TV may be linked to his increased sexual disinhibition.
The nature of the identity that Leonard presents is co-constructed and renders him vulnerable to
the interpretations of others who do not suffer from any type of dementia and who do not
understand how dementia is manifested differently in persons with frontotemporal dementia as
compared to those with Alzheimer’s Disease type dementias. When Leonard’s knowledge and
remaining capacities are acknowledged by ‘healthy’ others, such as staff, he presents himself as
an ‘ambassador’ of the neighbourhood, contributing significantly to the welcoming nature of the
psychosocial environment. This in turn fosters positive interactions with family members of the
residents that he assists. The more prevalent tendency, however, is to frame Leonard as a
‘problem.’ This failure to recognize how his particular type of dementia compromises his
behaviour led some of our participants to re-construct Leonard as a devious person with bad
intentions. Proponents of Person-centred Dementia Care (Kitwood, 1997) warn against the
potentially malignant effects of our own attitudes toward dementia on the interactions between
people living with dementia and their significant others such as family members. Moreover, in
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
22
Sabat’s (2001) terms, staff and family constructions of Leonard as a problem effectively rob him
of his remaining selfhood, ‘ambassador’ being supplanted by ‘deviant’ as a prevailing identity.
Again, we also see in this act the exercise of power that derives from the relatively higher social
capital enjoyed by healthy others. In this way, Leonard is silenced, his needs unheard and unmet.
In their constructions of the environment, staff and family members thus position Leonard as the
antithesis of homelikeness. Because of him, they say, the doors to the fridge, freezer and
residents’ rooms must be locked and homelikeness is undermined. According to staff and family
members, Leonard’s behaviours impede their ability to meet the needs of Leonard’s fellow
residents in the neighbourhood. Ironically, Leonard’s own NDDC behaviours to which they refer
to are not recognized as such.
2. Constructing psychosocial environments
An option for families who wish to supplement the focused time that they spend with their
relative in care is to hire a professional ‘companion’ who engages with the resident on a one-to-
one basis. Despite their central role in the co-construction of the psychosocial environment,
many such companions do not appear to understand the characteristics of different types of
dementia and associated behaviours. This in turn leads to misinterpretations and contributes to
the negative portrayal of Leonard as a deviant. An organizational commitment to a person-
centred approach to care thus needs to include free and regular information sessions on different
types of dementia in which family, friends, companions and volunteers could participate. The
purpose would be, in part, to explain that certain behaviours are not deviant, but consistent with
the characteristics of different types of dementia.
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
23
Yet it is primarily interdisciplinary staff upon whom nursing home residents rely to provide
continuous human contact as well as the care they need. These contacts, argue Coughlan and
Ward (2006), are essential to the residents’ sense of wellbeing and personhood and thus speak to
the centrality of staff in co-constructing the residents’ environment. Due to the frequency and
duration of daily contact with residents and their relatively higher levels of social capital, it is the
nursing staff who are situated at the top of a hierarchy of influences over the residents’
environment.
This is not to say that individuals do not have agency for, as we have seen, Leonard is active in
the co-creation of his environment. However, much of his contribution invokes responses by
more powerful others whose will is more likely to supersede his own. Thus while he is not
passive, his needs remain unmet much of the time. Similarly, family members of residents are
important advocates and agents of change, and their voices will be heeded so long as they do not
conflict with staff goals that are dominated by the need to meet objectives dictated by a
biomedical model (Henderson, 1995). Our observations revealed that overextended nursing staff
dedicated most of their time to clinical care, assistance with activities of daily living (such as
bathing and feeding) and charting activities. Similarly some rehabilitation assistants focused on
the generation of visible outcomes such as crafts or cookies, rather than meeting the residents’
psychosocial needs. Scape-goating somebody like Leonard, who lacks the power to defend
himself, for failure to maintain as homelike an atmosphere as staff would like, is ultimately
easier than critically examining one’s own practice relative to residents’ needs. The efforts of
staff members who make a concerted effort to recognize and honour the needs of the residents
are all the more notable in this context.
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
24
Ultimately, however, the onus of responsibility for staff ratios, qualifications and training lies at
the organizational level where economic, social and cultural capital are concentrated (Coughlan
& Ward, 2006; Schwarz et al., 2004; Sheridan, White, & Fairchild, 1992; Siisiäinen 2003; Stone
& Harahan, 2010). Power differentials between each level of authority play out with a domino
effect, beginning with high-level policy decisions responsible for under-resourcing of the long-
term care sector. This argument is better illustrated with other data from this project to be
reported in a forthcoming article on the dining experience.
Study’s limitations
Leonard’s expression of behavioural variant frontotemporal dementia does not necessarily
characterize all individuals with this illness. Nor is this study in any way replicable. In fact,
another resident in the neighbourhood with a frontotemporal dementia diagnosis acted very
differently, and some residents with non-frontotemporal dementias exhibit similar tendencies,
such as hoarding. While the configuration of behaviours described here has been linked to
behavioural variant frontotemporal dementia, the point here was not so much to capture how
persons with this diagnosis act. Rather we sought to draw attention to how such variations in the
dementia-related behaviours resulting from different forms of dementia raises some important
questions concerning environmental design assumptions as well as how staff and family
members respond to need-driven behaviours.
While staff members in one focus group observed that Leonard’s hoarding of items from the
renovated dining area had ceased, we were unable to corroborate this with ongoing observation
once the study ended. This is unfortunate since it raises the possibility that the changes
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
25
implemented addressed an unmet need of Leonard’s which, if clearly identified, could be
addressed in other areas of his life. We also know, however, that the needs of people with
dementia are not uniform and that changes made to accommodate one resident could provoke a
less desirable effect on another.
As previously noted, we were unable to interview Leonard and his family members who were
concerned that our documentation of some of the NDDC behaviours that we have described
could be misconstrued and somehow get him into trouble. Through our subsequent conversations
with family members it is clear that their own mistrust arose from their ongoing experience of
precisely the type of misunderstanding of Leonard that we have described. Having read our
manuscript, they conveyed to us that they finally felt understood and hoped not only that it be
published but that it become ‘required reading’ for long-term care staff.
Interviewing long-term care residents with frontotemporal dementia and their family members is
undoubtedly an important next step in understanding how their environments are co-constructed.
Exploring these constructions across different types of long-term care living arrangements could
also increase confidence in the extent to which these insights can be generalized. Currently, the
transferability of our findings may be said to be limited to similarly configured SCUs grappling
with the challenges of accommodating residents with different types of dementias. That said, the
critical-constructionist approach adopted in this paper contributes to an understanding of the
mechanisms underlying the NDDC framework. In this respect, we suggest that our approach
might serve as a useful methodological template for others interested in exploring its application
in applied research settings.
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
26
Conclusions
Efforts to change the environment in accordance with recommendations for ‘dementia’ care units
are typically oriented toward persons with Alzheimer’s Disease type behavioural symptoms and
bring to light the difficulties of responding appropriately to the diversity that actually
characterizes many such units. This case study documents the contradictory needs of a person
with behavioural variant frontotemporal dementia relative to other residents of a secure dementia
unit in a residential care home. Examining the distinct physical and psychosocial environmental
requirements of elders with frontotemporal dementia versus those with Alzheimer’s Disease or
vascular dementias draws attention to the potentially harmful effect on the quality of life of both
groups when they co-reside in ‘dementia’ care settings. This work also highlights the challenges
to staff seeking to meet the conflicting needs of such residents and raises the question as to
whether or not such challenges could be overcome if frontotemporal dementia residents were to
reside in a dedicated frontotemporal dementia unit rather than being mixed in with persons with
Alzheimer’s Disease-type dementias.
Examining Leonard’s experience through a critical constructionist lens brings to light the
importance of understanding how people with dementia contribute actively in both positive and
negative ways to both physical and psychosocial environments relative to their NDDC
behaviours. Their interactions with ‘healthy’ others are highly instrumental in determining the
nature of their experience, and whether or not the selves they attempt to project are validated or
denied. An understanding of the NDDC nature of behaviours of people with dementia that are
viewed as challenging can help those without dementia to respond appropriately to them and
minimize the behaviour. The capacity and willingness to act on this knowledge is nonetheless
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
27
constrained at times by resource limitations, organizational policies and prevailing attitudes that
motivate staff and families to promote their own constructions of residents’ behaviour.
The necessary shift in perspective and in practice by dementia caregivers can only occur with
appropriate organizational support. Foundational and ongoing training in both the implications of
different diagnoses of dementia and in the multiple ways in which the physical and psychosocial
environments interact to influence residents’ behaviours underlies these efforts. Equally
important, however, are the working conditions and incentives that support the hiring and
retention of sufficient numbers of staff whose evaluation as potential and ongoing employees
places as much emphasis on interpersonal skills as it does clinical expertise. Spending time with
the resident and getting to know each one well enough to identify unmet needs must be
recognized as a high priority in the care providers’ daily practice, for which they need sufficient
time and flexibility that must be supported organizationally and as a culture of care on the
neighbourhood to which all staff members are equally committed.
Unless this shift occurs, it is ultimately the residents—those with the lowest stock of social
capital to draw on—who will continue to pay, their needs unmet, their voices silenced, and the
blame for their behavioural responses to unmet needs transferred to them rather than the
psychosocial and physical environments within which they are situated. Recognition of the
broad-based underpinnings of the psychosocial environment and the interplay between this and
the physical environment is essential if we are to understand how the background and proximal
factors identified by ‘needs-driven behaviour’ theorists interact and influence behaviour and the
quality of life of dementia residents in care is to be optimized.
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
28
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Abbreviations used
LPN – Licensed Practical Nurse
NDDC – Need-Driven Dementia-Compromised
SCU – Special Care Unit
1
The name Leonard, as with the names used to refer to all other research participants, is a pseudonym assigned to
protect his identity.
Please cite from published version: Koehn, S., Kozak, J.-F., & Drance, E. (2012). ‘The Problem
with Leonard’: A critical constructionist view of need-driven dementia-compromised
behaviours. Dementia: The International Journal of Social Research and Practice. 11
(6):709-25. DOI:10.1177/1471301211421264.
34
2
The non-specific frontotemporal dementia with which Leonard is diagnosed is only one of three clinical
presentations of frontotemporal lobar degeneration (Merrilees & Miller 2003). Behavioural symptoms of the other
two—semantic dementia and progressive nonfluent aphasia—are not presented here.
3
This understanding of ‘social capital’ per Bourdieu ‘puts the emphasis on conflicts and the power function
(social relations that increase the ability of an actor to advance her/his interests)’ and is distinct from Putnam’s more
recent rendition of social capital as a combination of ‘moral obligations and norms, social values (especially
trust) and social networks’ (Siisiäinen, 2003, p. 183).
4
i.e. RNs, Clinical Nurse Specialists, physicians, psychiatrists etc. who by virtue of their more extensive knowledge
of biomedical practice, the dominant ideology in this context, have greater degrees of symbolic power. Stone and
Harahan (2010) hold the hierarchical command structure prevalent in long-term care responsible for the low
involvement of lower-level staff in care planning and ongoing decision-making. This in turn gives rise to the
perception that their jobs are not respected (job dissatisfaction) and high turnover rates.
5
The two focus groups included a total of seven family members, three of whom were interviewed in both rounds.
Of these, three were spouses/spousal equivalents and four were daughters.
6
I.e. All references to Leonard’s ‘influence’ on the environment.
7
Research shows that of these three, only the 1
st
and 3
rd
behaviours reliably distinguish frontotemporal dementia
from other dementias, although all are characteristic. However, Leonard’s style of hoarding reflects the impulsivity
more typical of persons with frontotemporal dementia.
