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Pathologizing behavior: Meanings of behaviors in dementia care

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Deficit and problem-based approaches to behavior stigmatize persons with dementia and cause great unnecessary suffering. In order to reduce the harm caused to persons misunderstood, it is important to understand the process by which staff attach meaning to behaviors and how those meanings ultimately influence how staff respond to behaviors. To this end, this research sought to examine the perceptions and meanings that staff attach to behaviors, how staff experience these behaviors, and the role that meanings and experiences have in staff actions and responses to specific behaviors. This paper focuses on one sensitizing concept that emerged from our study — pathologizing behavior — that reflects how behaviors become pathologized and problematized in the long-term care context. Conducted as part of a larger interpretive grounded theory study, active interviews were conducted with 48 staff members working in a range of positions in long-term care homes in Ontario, Canada. All staff interpreted and placed residents' behaviors in context through a complex process that started with the process of filtering behavior through the lens of pathology, and guided how staff then assigned meaning to the behaviors, how they characterized behaviors as “challenging”, and ultimately reacted through crisis management. The findings demonstrate the impact biomedical discourses have on meanings attached to behaviors and responses to behaviors and point to the need for alternative discourses that emphasize understanding meanings of actions using multidimensional lenses.
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Pathologizing behavior: Meanings of behaviors in dementia care
Sherry L. Dupuis
a,
, Elaine Wiersma
b,1
, Lisa Loiselle
a,2
a
Murray Alzheimer Research and Education Program, Faculty of Applied Health Sciences, University of Waterloo, Waterloo, ON, Canada N2L 3G1
b
Master of Public Health Program, Lakehead University, 955 Oliver Road, Thunder Bay, ON, Canada P7B 5E1
article info abstract
Article history:
Received 1 September 2011
Received in revised form 15 November 2011
Accepted 3 December 2011
Deficit and problem-based approaches to behavior stigmatize persons with dementia and
cause great unnecessary suffering. In order to reduce the harm caused to persons misunder-
stood, it is important to understand the process by which staff attach meaning to behaviors
and how those meanings ultimately influence how staff respond to behaviors. To this end,
this research sought to examine the perceptions and meanings that staff attach to behaviors,
how staff experience these behaviors, and the role that meanings and experiences have in
staff actions and responses to specific behaviors. This paper focuses on one sensitizing concept
that emerged from our study pathologizing behavior that reflects how behaviors become
pathologized and problematized in the long-term care context. Conducted as part of a larger
interpretive grounded theory study, active interviews were conducted with 48 staff members
working in a range of positions in long-term care homes in Ontario, Canada. All staff inter-
preted and placed residents' behaviors in context through a complex process that started
with the process of filtering behavior through the lens of pathology, and guided how staff then
assigned meaning to the behaviors, how they characterized behaviors as challenging, and ulti-
mately reacted through crisis management. The findings demonstrate the impact biomedical
discourses have on meanings attached to behaviors and responses to behaviors and point to
the need for alternative discourses that emphasize understanding meanings of actions using
multidimensional lenses.
© 2012 Elsevier Inc. All rights reserved.
Keywords:
Dementia
Long-term care
Behavior
Grounded theory
A few years ago, I (first author) was at a conference fo-
cused on Alzheimer's disease and related dementias (ADRD)
with John, a person living with dementia. During the confer-
ence John became increasingly distressed with presentations
he had seen on the program focused on behaviors in demen-
tia. He spoke to me about how the current language, discus-
sions, and approaches to behaviors blamed persons with
dementia for behaviors and labeled persons as violent, ag-
gressive, disruptive, challenging and so forth. This was hurt-
ful and stigmatizing and, as John emphasized, did not
reflect the meanings of the actions of persons with dementia.
Others with dementia have spoken of similar frustrations and
fears. Consider the following quote from a person with de-
mentia (from Mitchell et al., 2006):
That's such an important thing, for people to realize that
lots of times, you know how we've always been labeled
as being violent or reacting inappropriately, but if people
were to think deeper than that, and see deeper than
that, lots of times we're reacting to something, there's a
Journal of Aging Studies 26 (2012) 162173
Corresponding author. Tel.: + 1 519 888 4567x36188; fax: + 1 519 746
6776.
E-mail addresses: sldupuis@uwaterloo.ca (S.L. Dupuis),
ewiersma@lakeheadu.ca (E. Wiersma), loiselle@uwaterloo.ca (L. Loiselle).
1
Tel.: +1 807 766 7250.
2
Tel.: +1 519 888 4567x35040; fax: +1 519 746 6776.
0890-4065/$ see front matter © 2012 Elsevier Inc. All rights reserved.
doi:10.1016/j.jaging.2011.12.001
Contents lists available at SciVerse ScienceDirect
Journal of Aging Studies
journal homepage: www.elsevier.com/locate/jaging
Author's personal copy
triggerBecause they often joke about, I'm going to be la-
beled as sexually inappropriate when I get into long-term
care because I can't stand the heat and they're all so
warm. I'm going to be in there and my children already
know I'm going to remove my clothing because I'm hot.
And I will be labeled as sexually inappropriate, but it
will be the heat.
So where do these understandings of behavior come
from? In North America, predominate discourses of dementia
continue to be framed and understood within biomedical/
pathophysiological and psychological/psychosocial models
of illness and disease (Clarke, 1999). Within biomedical ap-
proaches, behaviors are viewed through the lens of disease
or sickness, being the direct result of disease processes and,
in the context of dementia, changes in the brain (Russo-
Neustadt & Cotnam, 1997; Sweet et al., 1997). Psychological
approaches focus on managing the behavioral symptoms of
dementia (Volicer & Hurley, 2003). Some psychological
models attempt to link behaviors to psychiatric disorders in
order to identify appropriate pharmacological treatments
(Tariot, 1999). However, most psychological/psychosocial
models conceptualize behaviors as the result of the interac-
tion between personal and social/environmental factors.
Hall and Buckwalter (1987), for example, explained dys-
functionalbehavior as the result of a lowered threshold for
stress in dementia, where persons with dementia are unable
to cope with excessive personal and environmental stress.
Algase et al. (1996) developed the Need-Driven Dementia-
Compromised Behavior (NDB)model that has been updated
more recently by Kovach et al. (2005). The NDB model con-
ceptualizes behaviors as the outcome of various needs, par-
ticularly unmet needs, that persons with dementia may
experience but have difficulty expressing. Both more stable
background factors (e.g., cognitive, neurological, health and
psychosocial) and proximal factors (e.g., personal, physical
and social environment) interact together into behavioral re-
sponse. Others have conceptualized behaviors as unmet
needs (e.g., Stokes, 2000). From this perspective, behaviors
are viewed as meaningful because they arise in pursuit of a
goal or as an expression of a need(Colling, 1999, p. 28). Con-
sistent with this perspective, other researchers have sug-
gested that behaviors may be a form of communication
(Innes & Jacques, 1998); a way that individuals with demen-
tia seek to express themselves and their experiences (Sabat &
Harré, 1992). In all of these approaches, behaviors are con-
ceptualized at the individual micro level, and although
the impact of the built environment is recognized by some,
broader social and political contexts that shape human ac-
tions and serve to either enable or disable persons with de-
mentia are rarely considered.
Guided by such a micro lens, it is not surprising that iden-
tifying clinical interventions to manage the individual dis-
playing the behavior has been a large focus of research and
practice in this area. The range of interventions explored
has been as varied as the different behaviors examined. For
example, behavior management strategies such as spaced
retrieval and cued recall, noncontingent reinforcement
techniques, and backward chaining (e.g., Bird et al., 1995;
Buchanan & Fisher, 2002; Gormley et al., 2001; McGilton
et al., 2003; Teri et al., 1998) have all been examined as
have massage and therapeutic touch (e.g., Snyder et al.,
1995; Woods & Dimond, 2002), bright light therapy (e.g.,
Lyketsos et al., 1999), audio and video presence interven-
tions (e.g., Cohen-Mansfield & Werner, 1997; Miller et al.,
2001; Werner et al., 2000) and singing and music (e.g.,
Clark et al., 1998; Gerdner, 2000; Lesta & Petocz, 2006),
often with less than convincing results.
We can begin to see how dominant discourses shape how
behaviors are understood in the dementia care context, and
subsequently influence the approaches used to respond to
behaviors. As Freidson (1970) noted: While medicine is
hardly independent of the society in which it exists, by be-
coming a vehicle for society's values it comes to play a
major role in the forming and shaping of the social meanings
imbued with such value(p. 254). How we frame behaviors
influences decision making and how we act (Fazio et al.,
1999; Gubrium, 1986; Hantikainen, 2001). Individuals
come to be defined by misunderstood behaviors, as the wan-
derer, the screamer, the hoarder, violent, non-compliant and
so forth. Thus, even though actions may be appropriate and
completely legitimate given the circumstances, the behav-
iors and consequently the individuals are labelled as abnor-
mal and deviant because broader contexts are rarely
considered (Dupuis, 2010; Dupuis et al., 2011). Persons
with dementia are not seen as people within their own
right, as individuals with normal responses and emotions
to situations. Persons with dementia come to be viewed as
major sources of burdenfor both informal and formal
carers (Volicer & Hurley, 2003) and behaviors (that is, indi-
viduals) become things that need to be managed and con-
trolled rather than understood.
Consistent with this, some research on behaviors in long-
term care (LTC) settings suggests that more subjective factors
(i.e., the meaning that staff ascribe to behaviors), may have
just as significant an impact on staff's feelings and experi-
ences in managing behaviors and how they ultimately re-
spond as do the objective measures (Hallberg & Norberg,
1990). For instance, Roper et al. (2001) found that different
staff members assessed agitation in unique ways and, conse-
quently, responded to behaviors differently. These authors
concluded that there was an important link between staff's
feelings and perceptions of behaviors, their satisfaction with
their role as carers, and their chosen strategies for managing
behaviors. Similarly, Middleton et al. (1999) found that for-
mal carers working in special care units had different percep-
tions of behaviors than care providers working on traditional
units and, thus, experienced different levels of distress relat-
ed to behaviors.
As John noted at the conference, dominant perceptions
and approaches to behaviors can cause much unnecessary
suffering for persons with dementia who are misunderstood
(Fazio et al., 1999). They affect how persons with dementia
perceive themselves, how they are perceived and judged
by others, and the choices and opportunities made available
to them (Jonas-Simpson et al., in press; Kontos, 2005).
Kitwood (1997),Fazio et al. (1999), and others have de-
scribed the process of dehumanization in dementia that
starts with predominant discourses and labeling of persons
diagnosed with dementia, leading to the objectification of
persons labeled by fitting them into stages, categorizing
them, and testing for deficits. This dehumanization process
163S.L. Dupuis et al. / Journal of Aging Studies 26 (2012) 162173
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results in the devaluing of the person, which wears down
and damages self-esteem and self-efficacy of those labeled.
These experiences have profound implications for the health,
functioning and quality of life of individuals and lead to the
withdrawal by the individual from the social world.
After discussions with John at the conference, my colleagues
and I (authors of this paper) began reflecting on the extent to
which these predominant biomedical/psychological approaches
to behavior were being reflected in practice. We set out to exam-
ine the meanings that staff working in LTC settings attach to
behaviors and how those perceptions might impact their actions.
Conducted as part of a larger interpretive grounded theory
(Charmaz, 2006; Daly, 2007) study focused on developing a
comprehensive understanding of the perceptions and meanings
staff attach to behaviors, how staff experience behaviors, and the
role that meanings and experiences have in staff actions and
responses to behaviors, this paper focuses on one sensitizing
concept that emerged from our study pathologizing be-
havior that reflects how behaviors become pathologized
and problematized in the LTC context.
Methods
Sampling and recruitment procedures
Participants were recruited from 18 LTC facilities within
three geographical regions in southern Ontario, Canada.
With the assistance and support of the administrators within
each facility, we arranged a number of information sessions
which were conducted over a period of several months
with staff members working in the facilities. In each of the
sessions, we distributed a willingness to participate form
and asked staff members to complete the form if they were:
(1) interested in having a researcher contact them to hear
more about the study; and/or (2) willing to participate in
an in-depth interview about behaviors. In addition to contact
information, the willingness to participate form gathered
information on the gender and age of staff members, their
job status (i.e., full-time, part-time, and casual), the shift
they typically worked, the unit in which they most frequently
worked, the number of years they had worked at the current
facility and in LTC, and their job title/position. Using selective
and theoretical samplings, those formal care providers who
completed the form and met the criteria for the study were
contacted by telephone in order to give them more informa-
tion about the project and to determine whether or not they
were still interested and willing to participate in an in-depth
interview. We continued recruiting participants until theo-
retical saturation had been reached.
A number of criteria were used in determining who would
be approached from all those who indicated a willingness to
participate. Guided by past research (Baxter et al., 1992;
Beck et al., 1990; Beck et al., 1992; Cooper & Mendonaca,
1989; Middleton et al., 1999) we wanted our final sample
to include: a variety of staff positions who had contact with
residents and who worked both full-time and part-time;
staff who worked in a range of units in LTC settings; and
staff in different stages of their careers who may be more or
less prepared to manage behaviors. As preliminary themes
began to emerge, we used these themes to guide theoretical
sampling decisions and identify additional participants with
whom we could explore these themes further, fill out the
themes, and examine relationships between them (Charmaz,
2006; Glaser & Strauss, 1967).
The final sample included 48 staff members. As is expected
in long-term care homes, the majority of the sample were
female (n= 41), with males making up a much smaller pro-
portion of the sample (n=7) (Cott, 1997). Participants had
varied experience working in LTC, from approximately one
year to over 15 years. The majority of the participants
(43.5%) had worked at their current LTC home for over
10 years, another 26% had been working in the home for
under two years, while 30% had been working in the current
home between three and 10 years (see Table 1 for additional
characteristics of the participants).
Data collection strategies
Staff members who agreed to participate in the study
were asked to participate in an active interview (Holstein &
Gubrium, 1995). Active interviews emphasize the collabora-
tive and interactional process between the researcher and
participants and recognize that all knowledge is co-constructed.
The interviews elicited information regarding: how participants
thought about and described behaviors; their experiences in
dealing with behaviors; how staff typically responded to specific
behaviors; the consequences or impacts of behaviors on staff as
well as how they coped in these circumstances; and the factors
Table 1
Characteristics of staff members.
Characteristic n Pct.
Sex
Female 41 85.4
Male 7 14.6
Age
20 to 29 years 2 4.2
30 to 39 years 9 18.8
40 to 49 years 19 39.6
50 to 59 year 13 27.0
60 years or older 0 0.0
Unknown 5 10.4
Staff status
Full-time staff 34 70.8
Part-time staff 11 22.9
Casual staff/unknown 3 6.3
Shift regularly worked
Day shift 24 50.0
Evening shift 9 18.8
Night shift 1 2.1
Day/evening shift 5 10.4
Day/night shift 3 6.2
No regular shift/unknown 6 12.5
Staff position
Administration/management 6 12.5
Nursing 11 22.9
Healthcare aide/personal support worker 21 43.8
Support staff
a
7 14.6
Helping staff
b
3 6.2
a
Support staff includes recreation, restorative care, social work, physio-
therapy, and occupational therapy.
b
Helping staff includes including housekeeping and maintenance.
164 S.L. Dupuis et al. / Journal of Aging Studies 26 (2012) 162173
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that might influence how they respond to behaviors. An initial
interview guide was prepared for the interviews. However, as
patterns and themes began to emerge, the interview guide was
revised and additional questions were added to the interview
guide so that the presence and importance of these patterns
and themes could be explored more fully with other participants.
All the interviews were conducted by two research assistants
trained in active interview techniques and audio-recorded with
the consent of the participants. The interviews lasted, on average,
between 45 and 120 minutes.
Data analysis
The data from the interviews were formally analyzed
using the constant comparative method (Charmaz, 2006)
with the goal of developing a substantive grounded theory
on the meanings and experiences of behaviors in LTC facili-
ties and how meanings and experiences influence staff re-
sponses. The data collection and analysis processes occurred
concurrently and involved: (1) conducting an initial line-by-
line analysis of the transcribed interviews in order to identify
analytical ideas relevant to the meaning and experience of
behaviors we then explored further in subsequent interviews;
(2) comparing emergent patterns across individual staff mem-
bers within the same position or setting and across different
types of staff groups in order to identify common patterns in
the data as well as negative cases; (3) conducting focused
coding in order to cluster similar themes into broader concep-
tual categories and identify similarities and differences within
and between themes; and (4) conducting theoretical coding
in order to organize the many categories and patterns into a
more integrated set of relationships or configurations. Data
analysis was conducted collaboratively among the researchers.
Working as a team offered us important opportunities to talk
about common and divergent perceptions and observations
and to address inconsistent interpretations. This paper focuses
on one of the concepts within our emergent grounded theory.
Pathologizing behavior
Filtering behaviors (through the lens of pathology)
In order for staff to respond to behaviors in the LTC environ-
ment, they needed to interpret and place behaviors in context.
The first step in this process was filtering the behavior through
the lens of pathology. All behavior, regardless of whether from
a resident who had dementia or not, was filtered through this
lens. This contextualizing process involved locating the be-
havior, assessing the illness status of the resident, and deter-
mining whether or not a resident had dementia and to what
degree.Thisprocesswassubjectiveforeachstaffmember,
although loss of functional ability, confusion, and loss of mem-
ory seemed to characterize their perceptions of individuals
who had dementia. One personal support worker (PSW) noted:
With them striking or them calling names noit doesn't
affect me 'cause I know where it's coming from. You see
you have to have a different mindset when you're at
work. Your mind cannot be set how it is in the outdoors.
Like outside someone calls you a name, outside parking
lot, there's a different reaction to it. But you're in a setting
where you're at work now. You know what you're work-
ing with. You're working with Alzheimer's, you're work-
ing with dementia, you're working with schizophrenia,
you could be working with brain injury. You have to
look at all the steps you're at. [PSW]
Often the behaviors from residents without dementia
were interpreted very differently than behaviors from resi-
dents with dementia. Thus, pathology played a significant
role in the construction of meaning of the behavior and
how behaviors were experienced:
You have some that don't have Alzheimer's that present
challenging behaviors (chuckles). Those are probably a
little more harder to accept if they're challenging behav-
iors and they're not Alzheimer's because they know
what they're saying. [Administrator]
Viewed through the lens of pathology, dementia was
assigned moral status. Staff members perceived that persons
with dementia had lost the ability to reason and to know the
difference between right and wrong: There's just no re-
morse in there because there's no area in the brain that's cor-
responding right from wrong or good or bad. [Nurse] As
such, residents with dementia did not necessarily know
they were exhibiting specific behaviors:
I really believe that the residents aren't aware of their
behaviors. I really feel that their behaviors aren't an
issue for themselves. The behaviors of the residents
are as a result of either physical deterioration orbeing
agitated because of a reason and I don't think residents are
very aware of their behaviors. I could be way off but I
don't think they are aware or frustrated by it. [Recreation
Staff]
Residents, then, were seen first as cognitively impaired, and
then were viewed to be unaware of right and wrong judgments.
In this circumstance, residents were absolved from any personal
responsibility for their behavior or blame was deferred: Now
the ones with dementia you have more understanding.
[PSW] Participants emphasized the negative consequences
when staff did not attach behavior to the disease:
I think sometimes what happens too is staff forget it's a
disease, that it's an illnessand they sometimes take it
personally and they think that this, they sometimes have
difficulty detaching the fact that this resident really
doesn't know what they're doing. [Management]
Because the expectations of the job and the needs of
residents were so great, staff felt that those working with
residents with dementia or on a dementia unit had to be a
special kind of person. Since dementia was viewed as a
165S.L. Dupuis et al. / Journal of Aging Studies 26 (2012) 162173
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moral status, a specialquality was expected of staff who
worked with this population. Many of the participants
commented on staff who were just there for the money
and staff who were inappropriate in their interactions
with the residents, in contrast to those who were special.
Thus, not only does dementia confer a moral status on resi-
dents, staff had to be a certain type of moral person to work
with residents living with dementia: You definitely have to
have a certain personality to work with this kind of person.
[PSW] Some staff described having great respect for their
co-workers who worked with residents with dementia, re-
ferring to them as amazing human beingsand a special
breed of persons.
The first step in the process of meaning-making then, was
to place the behaviors in context. In this way, staff filtered
behaviors, and separated behaviors from those with dementia
and those without. Behaviors from residents with dementia
were not as likely to be taken personally because dementia
was viewed as a moral status residents were absolved of
personal responsibility because of their inability to know
right from wrong. It took a special kind of person to work
with residents with dementia. Not all staff possessed these
qualities, but in order to successfully interact and care for
residents with dementia, qualities of patience and under-
standing, compassion, and kindness were essential.
Assigning meaning to behaviors
Once staff filtered and contextualized behaviors, they
assigned meaning to the behaviors. Filtered through the
lens of pathology, it is not surprising that the majority of
staff viewed behavior as a manifestation of the physiological
disease process, and in the case of dementia, to the deteriora-
tion in the brain: I think the behaviors are related too,
depending on what areas of the brain are affected by the
Alzheimer's disease.[Director of Resident Care] This was
often learned either through interaction with others in the
culture or through formal training opportunities:
What really had an impact on me was understanding the
physiological aspects of dementia and the different types
of dementia and how each one affects different areas. I
mean for me that solidified what I already knew, but I'm
able to say OK, this person's going to have these types of
problems or challenges. Somebody who has this kind of
disease will have this kind of challenge and how I can
work with that person. I found that very helpful for me
and tend to find information like that very helpful because
it grounds me in my knowledge and I'm able to get past
the person. You know it's a disease process. [Recreation
Staff, italics added]
As a manifestation of the disease, behaviors were viewed
as a normalreaction given the type of dementia the resi-
dent had:
Obviously there's a problem with the brain and that's
why their perception is different, and that's why they
react in that way because to them that's normal behavior.
In some cases, it could be like a front lobe dementia, of
course they act very differently. [Director of Resident
Care]
Different types of behaviors were associated with different
stages of dementia. In particular, behaviors such as calling
out and other types of vocalizations were attributed to specific
stages of dementia: I think she's going through the third stage
of Alzheimer's right so it's just a matter of time that she would
just stop doing thatit's just a stage that they have to go
through.[PSW]
For some, behaviors in the dementia context were also
viewed as means of communication, as a method of expres-
sion, and for some the only method they had of communicat-
ing with others. As such, when interpreted in this manner,
behaviors were imbued with meaning. This view of behaviors
stands in contrast to behavior seen as only a manifestation
of the disease process, which was not imbued with meaning
beyond the physiological:
It's not attention for attention's sake when they act out.
There is a reason, always is a reason behind it when, I
feel, you're dealing with Alzheimer's or dementia there's,
in their mind there's a reason behind it. It's not acting
out for acting out sake you know. [PSW]
What was evident, however, was that staff saw the dis-
ease impacting residents' ability to express themselves, and
thus, behaviors were an attempt by residents to communi-
cate within the context of dementia. Behaviors were viewed
first as a manifestation of the disease and then as communi-
cation; behaviors were never interpreted apart from the
disease:
I mean there has to be a reason for everything I mean the
disease process would obviously trigger them to act a
different way than they normally would. So whether that's
kind of fogging their brain or whether they should be
doing that or notJust maybe the disease causes them to
call out when normally if a trigger like that happened to
somebody who wasn't affected by the disease they would
know not to call out. [Support Staff]
Characterizing behaviors as challenging
Once staff had filtered the behavior through the lens of
pathology and assigned meaning as the disease process
(and for some a means of communication), they interpreted
behavior through additional lenses that reflected specific
characteristics of the behaviors. This determined the level
of challenge associated with specific behaviors. These char-
acteristics included the intentionality, predictability (or
unpredictability), and persistence of the behavior, how
threatening the behavior was perceived, the social appropri-
ateness of the behavior, and the degree of impact on others
of the behavior.
166 S.L. Dupuis et al. / Journal of Aging Studies 26 (2012) 162173
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Interpreting behavior through the lens of intentionality.
Behavior from all residents was filtered through the lens
of intentionality. Behaviors from residents who did not
have dementia were almost always viewed as intentional,
whereas only selected behaviors from residents with
dementia were viewed in this way. It was the pathologi-
cal status of the individual that seemed to determine
intentionality, not the behavior itself. A nurse described
this:
I think it depends, for me it depends on whether I think
they can help it. If, you know, I would certainly feel differ-
ently if it was a cognitively well person groping at me
than I feel about [someone else].
Interpreting intentionality was an individual meaning-
making process, where for some the perceptions of the per-
sonality of the resident played a part in not only defining
the behavior but also the person:
The one that's the worst is somebody who is very cogni-
tively aware and very miserable. Someone who is pur-
posely being contrary and they know it. You can't please
'em no matter what, very poor outlook, very miserable,
that's the most difficult I find. [Nurse]
Behaviors were viewed as very challenging when they
were directly intentional and taken personally by the
staff. In fact, intentional behaviors were more likely to
impact staff in deeply personal ways when they were
not able to filter these behaviors through the lens of
pathology:
That was annoying because he was very personal with it.
He would look you right in the face and say this nasty
word. And I think that, when it feels personal, that's
when it's really hard to cope with. [PSW]
Interpreting behavior through the lens of predictability. Be-
haviors that were unpredictable were interpreted by staff
as more challenging than those that were more predictable.
The unpredictability of behaviors was linked to the unpre-
dictable nature of dementia: It's an unpredictable sort of
illness. You don't knowwhy are people the way they are
on a certain day?[Director of Resident Care] Although
confusion and memory loss were perceived to be consistent
from day-to-day, the manifestation of the disease and asso-
ciated behaviors could change drastically from day-to-day,
even hour to hour:
Every day is different and one resident could be very calm
one day and she needs to be redirected and you know
your interventions work and other days it's just seems,
they're inconsolable. [Recreation Staff]
This made it very frustrating for staff who often did not
know how to respond or which approaches would be suc-
cessful on any given day.
Part of the challenge of unpredictable behaviors was the
interruption to tasks that needed to be completed:
when the behavior is there, you have to stop what
you're doing. And take care of it, so I guess the challenge
would be time. The unpredictability and you're having to
deal with it and its taking time away from your other
jobs. [Nurse]
Interpreting behaviors through the lens of persistency. Persis-
tent behaviors were perceived as taxing and thus were al-
ways viewed as challenging. Persistent behaviors were most
often described as verbal behaviors, such as non-ending
questioning or repetitive verbal comments, but also included
physical behaviors such as banging or tapping:
Things that I do get agitated with, and we really shouldn't
because it is one of the realms of dementia or whatever, is
the repetition. That's the one thing that gets to me. Hit me,
kick me, whatever, that doesn't bother me, but when you
have somebody coming to you 37 times in half an hour
and asking the same thing, that really gets to me. That
gets me wound up, gets me tense, gets me aggravated. I
have to walk away from that resident, get as far away as
I can. [PSW]
Persistent behaviors were not perceived to have any
meaning or particular purpose, were not communicative in
any way, and needed to be dealt with so as to not escalate
other residents' behaviors. Similar to unpredictable behav-
iors, persistent behaviors also interfered with staff getting
their work done:
Last night there was one! I'm going, it was just a con-
stant annoying noise that this man was making and
all the residents were saying is he going to stop or is
he going to continue this all night?Isaidno just
wait 'til I get him into bed and he'll settle down.I
says right now I can't do him right now but I will do
him next.Right but he was, he was in that wheelchair
and he's trying to move it. He took the table off of his
chair and he was constantly making this huuuuhhhhh
noise and you know and yeah it was irritating. You
know and I go to the nurse OK you gotta help me,
you gotta get this man to bed before, she goes you
kill him.Isaidno not really(both laughing). But be-
fore I kill myself OK. Because it can, it can be very an-
noying. [PSW]
Interpreting behaviors through the lens of perceived threat. Be-
haviors viewed as most challenging were those that posed a
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threat to staff members, the resident themselves, or other
residents. These behaviors largely were aggressive in nature
and were even more challenging when they were also
unpredictable.
Sometimes it's scary absolutely, I mean, I don't wanna get
hurt and the residents, I don't wanna hurt the resident
and I don't want to see anybody else get hurtI would
have to say that was one of the biggest fears, yes, being in-
jured or a resident being injured. [Nurse]
Fear was greatest for female staff members and for those
with little experience responding to more aggressive behav-
iors or with little training:
Yeah, he was chasing us and I don't know if um what he
would have done if he caught one of us. I was just afraid
because like first of all I was new then, I didn't know, I
didn't have the knowledge how to respond to that you
know. [PSW]
Aggression was especially difficult for a few women who
had experienced physical abuse in their pasts.
Interpreting behaviors through the lens of social appropriate-
ness. Staff assigned meaning to behaviors based on the social
appropriateness of behaviors. Although they occurred less
frequently, behaviors that crossed social boundaries, such as
sexual expressions, caused great discomfort for staff mem-
bers. Even though staff at some level associated sexual be-
haviors as linked to the disease process, this was hard for
some to reconcile because of the intimate nature of these
behaviors:
Possibly the sexualI think they're particular distressing
and they, I think that can be where [staff] lose sight of the
fact that this isn't an illness anymore because they really
don't like that. They don't like to be referred to in a certain
way, they don't want to be touched from somebody that
they're trying to provide care to. I think that in some
ways that crosses the limit of where you know, you hit
or whatever and I can understand because it's your illness
and I'm not going to hold that against you, but when it
gets into sexual behavior towards them, people don't
like that line crossed. [Director of Care]
Interpreting behaviors through the lens of social appro-
priateness meant that, for certain behaviors, morality and
values came into play when assigning meaning:
though I think [sexual behavior] just probably sets off a
bit of a red alert. I think it's more difficult because it's such
a moral, there's so many values attached to that and I
think we're all at different places depending on what our
experiences are and what our morals are and how we've
been raised so I could see that as being a real difficult
area. So it's created a lot of dissension. [Support Staff]
Staff had difficulty understanding these behaviors and
why they happened, which made these behaviors even
more difficult to cope with. Experiencing socially inappro-
priate behaviors in persons with dementia created tensions
for staff who, on the one hand, assigned moral status to
these residents, and yet, on the other hand, could only
view sexually inappropriate behaviors as amoral, thus
blame was assigned, and residents were judged in this
instance.
Behaviors that were more intrusive were also described as
very challenging and crossed the boundaries of social appro-
priateness. These included spitting, not respecting your own
personal space, and being clingy. Behaviors interpreted in
this way tested staff members' patience:
For me it's when we're on [the] dementia floor, is when
one of them will cling to you and constantly are behind
you no matter where you go. Seniorita, Seniorita, Senior-
ita, you know, lady, lady. That's when you know, like
there's a fly and it just buzzes in your face and you just
wish you had a fly swatter. But no, that's when patience
comes in. And I find that very challenging because you
do tend to get a little, you can be impatientI find that
really hard to deal with. [PSW]
Interpreting behaviors through the lens of impact on others.
Behaviors that were perceived to have a significant impact
on others, particularly other residents, were imbued with dif-
ferent meanings than those behaviors that did not impact
others. Staff did not seem to be as concerned with wandering,
for example, especially when it didn't interfere with others in
the home: I said, you know, if he's going to wander, let him
wander. Like, you know, as long as he's not hurting some-
body, he's fine. [PSW] In these cases, staff would just redirect
residents to protect their safety. Some staff even tried to un-
derstand the meaning of these behaviors for residents and as
long as it wasn't causing harm to others, the behavior was
interpreted as acceptable:
I wonder where it stems from. Like this one woman
she hoards, like she takes the aprons, she takes face
cloths, she takes towels and she hoards everything. So
I'm not a psychiatrist or psychologist or anything like
that but my thinking is years ago they were going
through the war right so they didn't have that stuff
so that's probably in her stages of dementia that's
where she is and she has to have that stuff so you
know it's no big deal. You know if she wants the
towels or the face cloths or whatever it's not hurting
anybody, let her have them. [PSW]
Conflicts between staff could occur when the same behav-
ior was viewed differently by different staff members.
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In contrast, other behaviors, such as yelling and repetitive
questions, were viewed as extremely challenging as they
often escalated other residents' behaviors, and disturbed
families and other visitors.
Well disruptive behaviors are those, to me, the noisy ones.
You know the ones that continually go uh-UH-uh-UH
and it just goes on all day. It aggravates the other resi-
dents. It's like a snowball effect. It will literally aggra-
vate them, all those around them and before you know
it it's like a bedlam in the end. You know you're not
going to make more noise than me or whatever. I find
that very very hard to deal withAnd my only way of
dealing with that is to say, when it first starts take that
noisy person out of there so it doesn't escalate to the
rest of them. Maybe that's not the right thing to do but
if you take that person out and put them in their room
or somewhere where they're not around so many peo-
plethenitwon'tescalatetherestofthembecause
they will and they'll all be misbehaving before very
long. [PSW]
As stated earlier, aggression was perceived to be the most
challenging because of the threat of physical and/or emotion-
al harm to others:
Um physical, physical, physically like hitting and kicking
and biting, that hurts (chuckles) you know and you
kinda sometimes you have to not hold them but you
have to control them because they're gonna hurt another
resident. [PSW]
In summary, then, it was not necessarily the behaviors
themselves that were challenging, but specific characteristics
of behaviors that were viewed as challenging by staff. These
characteristics came together to help shape the meanings
attached to different behaviors and affected how behaviors
were experienced.
Reacting through crisis management
Viewing behavior solely within the context of disease
meant that opportunities to understand meaning in behav-
iors were often overlooked and not taken. Instead, responses
to behaviors were most often reactive strategies to manage
crisis situations. When the meaning behind the behavior
was not considered, redirection and distraction were the
common responses:
When somebody starts to question constantly again I real-
ly try hard to redirect them, get them interested in any-
thing else, give them a juice or get them interested in
that or put something [on the] television, or get them in-
terested in the pets or show them you know a book or
anythingredirect their attention, get them interested
in something, then they'll stop. [PSW]
Recreation activities and humor were often used as a dis-
traction, as a way to divert attention. Other activities, like
walking, were used to distract and to tire residents out:
I know particularly what worked with the one resident
who was calling out, he was in a wheelchair and able
to walk. One of our people were trying to kind of thera-
peutically walk um, we would take him for a walk when
he was calling out and that would actually tire him out
enough not to call out for a little whilethe poor man
was going for six walks a day, just down the hall but
enough to kind of tire him out a little bit and get his
mind on something else. [Health Care Aide]
Given the time pressures felt on the job, for some staff
members, the only approach was to ignore or block out
more persistent behaviors completely:
When you have somebody coming up to you what time
is it, where is my room, what time is it, do you know
where my room isthirty times in a minute, it does get
challenging. You want to go AhhhhKKkkbut you can't.
But the only way I can say to get over that is, and I tell
all the staff here, that's Miss So-and-so or Mr. So-and-so.
That's them. It's not gonna changeYou have to look at
that as I say white noise, it doesn't exist, it's not here, pre-
tend it's not here, it's hard but you have to or you'll never
get anything done. [PSW]
Others spoke about acknowledging the person as a token
gesture, but ignoring the behavior:
Here's this woman yelling nurseand everyone's sort of
ignoring her. But we know that's her behavior and she re-
ally doesn't need anything. You know, we still acknowl-
edge her of course and say, you know. What's the
matter?, you know, What do you need?' but she doesn't
need anything. It's just her behaviorso I guess we're
just sort of acknowledging that we hear her. [PSW]
In the most extreme cases, especially when there was the
possibility of harm to themselves or others, restraints were
viewed as a necessary response: You trying to go with the
least that you can and yet these things will happen. And
you've got to resort to, you know, chemical restraints for
sure, physical restraint if necessary.[Director of Care] Pro-
tecting residents from possible harm through the use of re-
straints was viewed by some as more important than
individual freedom of choice:
I think that sometimes the right to be free is, you know
the freedom to express yourself, the freedom to hurt
yourself, uh the freedom to take a risk and all, I think
sometimes it's pushed beyond where it has to be because
I think sometimes people don't have, they have no
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judgment. And, I think that by giving them that freedom
of choice you're almost guaranteeing that they're gonna
fall and break a hip. [Registered Nurse]
Discussion
Our findings demonstrate how pervasive biomedical dis-
courses and approaches are in LTC settings and the impact
such discourses have on the meanings attached to behav-
iors and consequently, on the most common ways staff re-
spond. All behaviors described by the staff we interviewed
were contextualized and filtered through the lens of pa-
thology. This is not dissimilar to what Downs et al. (2006)
referred to as diagnostic overshadowing. Seen only through
the lens of pathology, all actions and expressions are at-
tributed to the labeled condition(Downs et al., 2006,p.
240) and have profound implications for the person with
dementia.
For the most part, the context of dementia allowed staff to
view behaviors through a different set of criteria and social
norms than other behaviors from residents without cognitive
impairments. Staff used boundary-work ( kerström, 2002;
Gieryn, 1995, 1999) to distinguish between residents with
and without cognitive challenges, and different types of be-
haviors in relation to the characteristics assigned to them.
As many of the staff members had been taught, they also
used boundary-work to determine the stage of dementia
and the expected behaviors for that stage. This raises real
concerns about the continued predominance of stage models
in dementia education and care, particularly given the het-
erogeneity in the progression of the disease documented in
many clinical studies in neurology, neuropsychology, epide-
miology, biology and clinical medicine (Ritchie & Touchon,
1992). As Ritchie and Touchon noted, While the progressive
nature of SDAT [Senile Dementia of the Alzheimer's Type]
gives rise to a changing clinical profile, the clinical variations
observed suggest that this progression is not orderly and that
cognitive functions may be differentially affected indepen-
dently of duration of the disease(p. 1396). When behaviors
were associated only with a particular stage of dementia, it
becomes easier to dismiss or ignore those behaviors. Given
the variations in how dementia presents itself across individ-
uals, a person-centred approach to understanding behavior is
much needed in both dementia education and care (see
Stokes, 2000).
Although some of the behaviors of persons with dementia
were still described as challenging, and sometimes tested
staff patience, staff did not blame residents with dementia
for most of their behaviors. Residents with dementia sim-
ply did not know what they were doing. Their behaviors
were rarely intentional, unlike residents who did not have
dementia; however, their behaviors became normalized
as part of the disease process and part of the work envi-
ronment (Hantikainen, 2001). These findings are contra-
dictory to previous literature, which found that most staff
believed that residents' behaviors were deliberate rather
than a consequence of dementia (Brodaty et al., 2003). Con-
sistent with other research (e.g., Johansson et al., 1999;
Smith & Buckwalter, 2005), behaviors of residents with
dementia were viewed by some staff members not only as
a manifestation of the disease but also as an important
means of communication. Nonetheless, viewing behaviors
as a communication strategy was tied completely to demen-
tia, and the disease association often overshadowed staff's
understanding of behaviors as a means of communica-
tion, as was evidenced in the way they responded. That
is, despite perceiving behaviors as communication, they
rarely responded by working to understand what was
being communicated the meaning of the behavior for
the resident. Instead, distraction, redirection, blocking,
ignoring, removing, and in extreme cases, using restraints
were the common responses in attempts to cope, often
unsuccessfully, with the behaviors. Certain events come
to be viewed as unavoidable parts of their joband shutting
off becomes the only viable option in order to get work done
(Sandvide et al., 2004,p.355).
The implications of pathologizing behavior are that staff
rarely contextualized behaviors biographically or historically.
Although a few staff attempted to assign meaning to less
challengingbehaviors beyond the disease, in most cases
life histories and experiences of residents that could help ex-
plain actions in alternative ways were not considered. Thus,
by pathologizing all behavior, body movements and actions
often reflective of past experiences of a resident are never
seen as purposeful or meaningful. Further, the inability to
contextualize behavior more broadly means that appropriate
responses by residents to broader social and environmental
circumstances are often ignored or dismissed. This has enor-
mous implications for the quality of life of residents who will
continue to have their actions misunderstood, but also to the
quality of the work life for staff.
Because of the harm and suffering that can be caused by
the current powerful fatalistic and destructive discourses,
especially those surrounding behavior, Fazio et al. (1999)
emphasized the need for positive alternatives to describe
the experience of dementia: As words change, so do per-
ceptions, and as perceptions change, so do actions(p. 5).
Alternative discourses challenge what is known and provide
new possibilities for being and relating. In fact, Barker
(2006) stressed that audience activity can deconstruct
ideology only when alternative discourses are available so
that the self becomes a site of ideological struggle(p.
497). Fazio and colleagues provide positive alternatives to
the symptoms and problem-basedapproach. They ask what
it would mean if instead of anxiety we saw eagerness, in-
stead of agitation we saw energy, instead of wandering we
saw exploring, instead of poor short-term memory we saw
spontaneity.
On the recommendations of John and others with demen-
tia, we came to adopt the term responsivebehavior a
term introduced not by academics or professionals but by
our partners with dementia as an alternative discourse
and conceptualization of behavior in the dementia con-
text. A responsive behavior discourse views all actions as
meaningful and moves us away from judging behaviors
to understanding meaning in actions and responses. It
means moving from a focus on dysfunction, deficit and
decline, to recognizing, valuing and believing in the con-
tinued abilities of persons with dementia to express their
experiences and act in purposeful, meaningful and even in-
tentional ways. It means instead of detaching from the person
170 S.L. Dupuis et al. / Journal of Aging Studies 26 (2012) 162173
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with dementia by ignoring or blocking, carers have the oppor-
tunity to find new ways of connecting with persons with de-
mentia in understanding meaning in actions by being truly
present, actively listening, and recognizing that there are
many ways for persons with dementia to communicate their
experiences, to be, such as through body and facial language. Fi-
nally, a responsive behavior discourse means moving away
from assessing, correcting and controlling perceived prob-
lemswithin the person to assessing and altering the broader
social and physical environment as understanding meaning in
actions requires lookingnot only at the individual level but be-
yond the individual.
Radar et al. (1985),Fazio et al. (1999), and Stokes (2000)
more person-centred approaches provide specific examples
of what a new paradigm premised on understanding mean-
ings in actions rather than problematizing behaviors would
look like in practice. It requires understanding and commu-
nicating with the person with dementiaand interpreting
these in the form of individualized care plans(Moniz-
Cook et al., 2003, p. 205). In Ontario, Canada the P.I.E.C.E.S
framework provides a holistic, person-centred and human-
istic approach that promotes a shared interdisciplinary
solution-finding process to understand the underlying mean-
ings in actions (P.I.E.C.E.S. Canada, 2008). The focus is not on
the behavior per se, but working together to discover the
meaning of the action. Within the P.I.E.C.E.S framework, inter-
disciplinary team members work together to assess the Physi-
cal, Intellectual, and Emotional health circumstances of the
individual, how best to maximize the continued Capabilities of
the person, and identify broader Environmental factors (i.e.,
built and social environment, organizational/systemic factors)
and aspects of the person's Social self (e.g., culture, spiritual,
biography of experience and life story, etc.) that might help
explain a person's actions, what they might be responding to,
what those actions might mean for the person, and how best to
respond.
How aging, dementia and behaviors come to be under-
stood is directly connected to the teaching and learning pro-
cesses provided to staff (Grant, 1996; Gubrium, 1986). In
fact, staff in this study had learned much of what they un-
derstood about behaviors from educational and training
sessions and interactions with others in the work environ-
ment. Our findings point to the profound implications of
education that contextualizes behavior primarily within a
disease frame of reference. The interviews conducted
with staff in this study suggest that the staff rarely criti-
cally reflected on their own practice and how their ap-
proaches and caring styles may be linked to the actions
of persons with dementia. What is needed are educational
opportunities that challenge understandings, force us to
confront the implications of our practices, and that pro-
vide a space for self-reflectionon perceptions and mean-
ings of actions (Dupuis et al., 2011, p. 106). More creative
educational opportunities that allow staff to witness the
consequences of their understandings and actions, such
as through research-based drama, may be particularly
effective in challenging dominant discourses and provid-
ing new possibilities for thinking about and acting in de-
mentia care (Jonas-Simpson et al., in press; Kontos et al.,
2010; Mitchellet al., 2011). Fazio et al. (1999), p. 4)provide
some key questions to assist with exploring assumptions
associated with behavior and the implications of those as-
sumptions that we have adapted here:
How do you describe the actions and behaviors of people
with Alzheimer's disease [and related dementias]?
What words do you commonly read in books and journals or
hear on television or in presentations and educational ses-
sions when dementia is the focus?
How do you describe the actions of persons with dementia to
your colleagues? When you are speaking with family members?
How do these words and perceptions influence your actions
or how you respond to behaviors?
How might thinking about behaviors in more positive ways
(e.g., eagerness versus anxiety, exploring versus wandering,
etc.) influence the ways you respond to behaviors?
All actions by persons with dementia are meaningful and
purposeful and often not associated with the disease how
does this understanding of behaviors influence your approach?
Having staff engage with some of the quotes presented in
this article and then critically reflect on the implications of
such discourses might also help staff think more deeply about
the connection between words, assumptions, and actions. Also,
education that provides staff with the skills and knowledge
necessary for reflection in action and reflection on action
(Schön, 1983) is critical in ensuring that staff understand
and respond to actions in more humanistic ways in day-to-day
practice. A practice that is guided by critical reflection would
include questions such as:
What happened today that I/we reacted well to?
What happened today that I/we could have reacted better to?
What judgments did I/we make in that situation?
How might my/our actions or caring styles have influenced
the situation?
What have I/we learned from the experience?
What could I do to improve the situation next time?
(Dupuis et al., in press; Mitchell et al., 2006).
Finally, staff need introductions to more multidimen-
sional frameworks that recognize the complex nature of ac-
tions (Bartlett & O'Connor, 2010; Cox & Parsons, 1994;
Stokes, 2000). Using a multidimensional lens requires staff
to explore and understand actions at the personal (i.e., sub-
jective experience, biographical, and historical), interactional
environmental (i.e., interpersonal relationship and immedi-
ate physical environment), and broader sociopolitical (i.e.,
organizational policies and practices, and social discourses)
levels, understanding that the best response cannot be as-
sumed to be best situated at the individual leveland re-
sponses at a number of levels may be necessary (Bartlett &
O'Connor, 2010, p. 92). Again, the P.I.E.C.E.S. framework is
an example of such an approach (P.I.E.C.E.S. Canada, 2008).
To facilitate a more multidimensional approach, policies and
practices need to change in a way that supports staff in caring
in humane and relational ways, and in ways that allow them
the time they need to be truly present, understand the mean-
ing in actions, and adopt a self-reflective practice.
171S.L. Dupuis et al. / Journal of Aging Studies 26 (2012) 162173
Author's personal copy
Acknowledgements
This research was made possible because of the financial
support provided through a Caregiving Research Grant joint-
ly funded by: the Alzheimer Society of Canada, the Canadian
Nurses Foundation, the Canadian Institutes of Health Re-
search Institute of Aging, and the Canadian Institutes of
Health Research Institute of Gender and Health.
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... However, in recent years, much controversy has emerged surrounding the usage of, and stigma associated with, the term "BPSD" as both label and assessment tool. In a similar vein of reframing behaviors as communication attempts of unmet needs, researchers (e.g., Dupuis et al., 2012;Macaulay, 2018;Cunningham et al., 2019) have also reexamined the utility and possible detriment of viewing these behaviors through a biomedical lens. The observations and concerns of these researchers reflect the tendency to pathologize behaviors, as opposed to understanding their true motivations, needs, and opportunities to intervene (Dupuis et al., 2012;Macaulay, 2018;Cunningham et al., 2019). ...
... In a similar vein of reframing behaviors as communication attempts of unmet needs, researchers (e.g., Dupuis et al., 2012;Macaulay, 2018;Cunningham et al., 2019) have also reexamined the utility and possible detriment of viewing these behaviors through a biomedical lens. The observations and concerns of these researchers reflect the tendency to pathologize behaviors, as opposed to understanding their true motivations, needs, and opportunities to intervene (Dupuis et al., 2012;Macaulay, 2018;Cunningham et al., 2019). Dupuis et al. (2012) assert that the utilization of deficitbased and problem-based approaches ultimately pathologize and stigmatize behavior of PWD, leading to unnecessary suffering. ...
... The observations and concerns of these researchers reflect the tendency to pathologize behaviors, as opposed to understanding their true motivations, needs, and opportunities to intervene (Dupuis et al., 2012;Macaulay, 2018;Cunningham et al., 2019). Dupuis et al. (2012) assert that the utilization of deficitbased and problem-based approaches ultimately pathologize and stigmatize behavior of PWD, leading to unnecessary suffering. They conducted an interpreted grounded theory study utilizing recorded interviews of 48 staff members in 18 long-term care facilities and elucidated the tendency for staff to filter behavior through the lens of pathology (Dupuis et al., 2012). ...
Article
Full-text available
Dementia has rapidly become a major global health crisis. As the aging population continues to increase, the burden increases commensurately on both individual and societal levels. The behavioral and psychological symptoms of dementia (BPSD) are a prominent clinical feature of Alzheimer’s disease and related dementias (ADRD). BPSD represent a myriad of manifestations that can create significant challenges for persons living with dementia and their care providers. As such, BPSD can result in detriments to social interaction with others, resulting in harm to the psychosocial health of the person with dementia. While brain deterioration can contribute to BPSD as the disease progresses, it may be confounded by language and communication difficulties associated with ADRD. Indeed, when a person with dementia cannot effectively communicate their needs, including basic needs such as hunger or toileting, nor symptoms of pain or discomfort, it may manifest as BPSD. In this way, a person with dementia may be attempting to communicate with what little resources are available to them in the form of emotional expression. Failing to recognize unmet needs compromises care and can reduce quality of life. Moreover, failing to fulfill said needs can also deteriorate communication and social bonds with loved ones and caregivers. The aim of this review is to bring the differential of unmet needs to the forefront of BPSD interpretation for both formal and informal caregivers. The overarching goal is to provide evidence to reframe the approach with which caregivers view the manifestations of BPSD to ensure quality of care for persons with dementia. Understanding that BPSD may, in fact, be attempts to communicate unmet needs in persons with dementia may facilitate clinical care decisions, promote quality of life, reduce stigma, and foster positive communications.
... En effet, Mr est confronté à un jeune soignant lui disant quoi faire de manière insistante. Or, c'est un ancien général qui était indépendant dans ses prises de décision, qui avait pour habitude de lui-même fournir des ordres et de répondre uniquement aux demandes de ses supérieurs.Cet exemple souligne le constat selon lequel les comportements des résidents sont quasi systématiquement vus comme le reflet direct d'une maladie(Dupuis et al., 2012). Cette pathologisation renvoie à la notion d'étiquetage (« labeling »). ...
Thesis
Le vieillissement de la population constitue l’une des tendances les plus importantes du XXIe siècle. En Belgique, la part des 65 ans et plus représentera, en 2071, 27,5% de la population. Cette évolution démographique a de nombreuses implications et génère d’immenses défis sociétaux dont la question de l’accompagnement des personnes âgées. Face à cette réalité démographique, le nombre de personnes âgées nécessitant des soins à domicile et en institution sera voué à augmenter. Au sein d’un système familial, la question du changement de lieu de vie génère un long processus de réflexion associé à une multitude de sentiments. Cette réflexion n’est pas favorisée par l’image négative (préalable à la pandémie Covid-19 !) des maisons de repos. Cette image s’explique notamment par le modèle prédominant au sein des institutions, à savoir le modèle biomédical. Ce dernier se concentre davantage sur les soins et prend peu en compte le relationnel et la personne en tant que telle avec ses forces et ses faiblesse. Or, afin de favoriser le changement, parfois nécessaire, de lieu de vie ainsi que l’adaptation et le bien-être du résident au sein de l’institution, il est essentiel de favoriser des valeurs centrées sur la personne. Celles-ci sont prônées par le mouvement du changement de culture institutionnelle initié dès le milieu des années 80 dans les pays anglo-saxons (sous l’appellation « Culture Change »). Ce mouvement s’appuie sur six piliers fondamentaux axés sur une philosophie et des pratiques bien spécifiques où le résident est considéré en tant que personne à part entière. Bien que des études soient encore nécessaires, l’implémentation des valeurs et des pratiques associées à ce mouvement révèle des résultats plutôt encourageants. Dans le cadre de ce travail, nous centrons particulièrement notre attention sur l’un des six piliers, à savoir l’approche centrée sur la personne. Cette approche s’articule autour de trois sous-concepts déterminants dans l’accompagnement des personnes âgées : (1) la connaissance personnelle des résidents ; (2) la réalisation d’activités individualisées signifiantes pour chaque résident et (3) le respect de l’individu et de son autonomie. C’est autour de cette approche que nos objectifs se sont construits. Dans un premier temps, nous avons donné la parole aux personnes âgées provenant de la population générale (des potentiels futurs résidents ; n = 71) afin de les interroger sur leurs préférences institutionnelles (étude 1). À notre connaissance, aucune étude scientifique n’a interrogé les personnes âgées à propos de leurs souhaits dans une perspective de choix d’institution. Ensuite, nous avons étudié l’impact de l’histoire de vie des résidents sur les professionnels (n = 96) avant même que ceux-ci ne -5- rencontrent les résidents (étude 2). Si certaines études soulignaient déjà certains bénéfices propres à la connaissance de l’histoire de vie des résidents, aucune n’avait interrogé son impact lors du changement de lieu de vie, c’est-à-dire lors de l’entrée en institution. Enfin, nous avons étudié les effets d’une approche psychosociale individualisée encore peu reconnue à la fois au sein de la littérature scientifique et au sein des institutions pour personnes âgées, à savoir la présence simulée. Celle-ci consiste en un enregistrement réalisé par les proches du résident. Cet enregistrement raconte, par exemple, une anecdote positive (étude 3 – deux études de cas indépendantes ; n = 2). Les résultats de la première étude suggèrent que les personnes âgées tout-venant sont plus enclines à entrer dans une institution ancrée dans la philosophie du changement de culture. Elles estiment que leurs choix et leurs habitudes de vie seraient davantage respectés, qu’elles se sentiraient plus comme « à la maison » et plus libres de vivre la vie qu’elles souhaitent, par rapport à une institution traditionnelle reposant sur une philosophie biomédicale. Notre seconde étude souligne l’impact positif de la connaissance d’éléments d’histoire de vie sur les professionnels avant que ceux-ci ne rencontrent le résident. En considérant au préalable l’histoire de vie, les professionnels se sentent plus confiants pour entamer une prise en charge, ils sont plus empathiques, et ils évaluent le résident comme plus sympathique et moins dépendant. De plus, les professionnels estiment leur charge de travail comme moindre, en comparaison avec une situation où ils ne bénéficient pas des éléments d’histoire de vie pour un résident au même profil clinique. Enfin, nos deux études de cas soulignent le bénéfice immédiat qu’ont les résidents à visualiser des enregistrements effectués par leurs proches (c.-à-d. à utiliser la présence simulée). Ils expriment davantage d’expressions positives en comparaison à une condition neutre. En conclusion, l’ensemble de nos résultats souligne l’intérêt de tendre vers un changement de culture institutionnelle qui puisse, entre autres, favoriser une approche centrée sur la personne. Ces résultats ne sont pas anodins dans le contexte actuel où le secteur institutionnel est, pour rappel, associé à une image extrêmement négative. Il s’avère donc urgent de promouvoir une démarche « Culture Change », favorisant la qualité de vie des différents acteurs (les personnes âgées concernées, les proches et les professionnels) sur base de valeurs appuyées par la littérature scientifique.
... When a distressed person's behaviour is not defused, escalation leads to physical self-protection. Traditionally labelled from a diagnostic perspective as behavioural and psychological symptoms of dementia (BPSD), the term responsive behaviour has been identified as the preferred term amongst direct caregivers, since these behaviours generally occur in response to a person's unmet needs and there is a movement to discourage pathologizing of human behaviour (Alzheimer Society of Canada, 2019; Behavioural Supports Ontario, 2020; Bourgeois & Hickey, 2009;Cohen-Mansfield et al., 2015;Dupuis et al., 2012;Dupuis & Luh, 2005). Up to 45% of older adults living with dementia admitted to hospital exhibit responsive behaviours (Dewing & Dijk, 2016;Keenan et al., 2011;Nayton et al., 2014), risking injury for both patients and caregivers. ...
Article
Older adults with dementia, when hospitalised, frequently experience responsive behaviours. Staff struggle to manage responsive behaviours without specific education. We aimed to enhance staff knowledge and confidence with care for older adults with dementia and responsive behaviours on medicine units at a Canadian hospital. An online dementia education program was disseminated to staff as part of a broader quality improvement project. Gentle Persuasive Approaches (GPA) encourages staff to reframe responsive behaviours as self-protective expressions of unmet needs and learn to assess their meaning. Participants completed online quantitative and qualitative measures of self-efficacy, competence and knowledge in dementia care at three times: immediate pre-, immediate post- and six to eight weeks post-GPA eLearning. Immediately post-GPA, participants showed significant increases relative to baseline in dementia care self-efficacy, competence and knowledge. Self-efficacy scores increased further eight weeks post-GPA. Before GPA, few participants described dementia-specific strategies for de-escalating a patient's agitation. Eight weeks post-GPA, participants described application of tailored, person-centred, non-pharmacological interventions and successful application of GPA strategies. GPA eLearning strengthened staff preparedness to interact with older adults experiencing responsive behaviours, thus enhancing their care.
... im-caring-person-living-dementia/understanding-symptoms/ responsive-reactive-behaviours) to emphasize that the behaviors have meaning and that there are physical, emotional or physical environmental factors that influence behavior. Changing the language that describes these behaviors also changes the potential management strategies that carers use when these behaviors occur (Dupuis et al. 2012). We acknowledge that the term is problematic, although, in the absence of consensus for suitable alternative terminology, we use the term "BPSD" here because it is arguably the most commonly used term. ...
Article
Full-text available
Hearing impairment commonly co-occurs with dementia. Audiologists, therefore, need to be prepared to address the specific needs of people living with dementia (PwD). PwD have needs in terms of dementia-friendly clinical settings, assessments, and rehabilitation strategies tailored to support individual requirements that depend on social context, personality, background, and health-related factors, as well as audiometric HL and experience with hearing assistance. Audiologists typically receive limited specialist training in assisting PwD and professional guidance for audiologists is scarce. The aim of this review was to outline best practice recommendations for the assessment and rehabilitation of hearing impairment for PwD with reference to the current evidence base. These recommendations, written by audiology, psychology, speech-language, and dementia nursing professionals, also highlight areas of research need. The review is aimed at hearing care professionals and includes practical recommendations for adapting audiological procedures and processes for the needs of PwD.
... In the context of dementia, cultural stigma is also produced and reproduced by biomedicalization and "the loss of self discourse" (Herskovitz, 1995;Kontos, 2012), which reinforce the cultural imaginary that persons living with dementia are incapable of purposeful and meaningful communication and the pursuit of life-enhancing relationships and activities. The actions, needs, and movements of persons living with dementia are thus often dismissed or portrayed as aimless in mass media, academic, and policy documents and are frequently perceived as disease-driven "symptoms" or "responsive behaviors" rather than meaningful attempts to communicate or to engage with others (Dupuis et al., 2012;Grigorovich & Kontos, 2018;Kontos et al., 2020). ...
Article
Despite the recognized benefits of sexual expression and its importance in the lives of people living with dementia, research demonstrates that there are multiple barriers to its positive expression (e.g., expression that is pleasurable and free of coercion, discrimination, and violence) in RLTC homes. These barriers constitute a form of discrimination based on age and ability, and violate the rights of persons living with dementia to dignity, autonomy, and participation in everyday life and society. Drawing on a human rights approach to dementia and sexual expression, we explored the experiences of diverse professionals, family members, and persons living with dementia with explicit attention to the ways in which macro-level dynamics are influencing the support, or lack thereof, for sexual expression at the micro level. Focus groups and in-depth interviews were conducted with 27 participants, and the collected data were analyzed thematically. While all participants acknowledged that intimacy and sexual expression of persons living with dementia should be supported, rarely is such expression supported in practice. Micro-level factors included negative attitudes of professionals toward sexual expression by persons living with dementia, their discomfort with facilitating intimacy and sexual expression in the context of their professional roles, their anxieties regarding potential negative reactions from family members, and concerns about sanctions for failing to prevent abuse. In our analysis, we importantly trace these micro-level factors to macro-level factors. The latter include the cultural stigma associated with dementia, ageism, ableism, and erotophobia, all of which are reproduced in, and reinforced by, professionals’ education, as well as legal and professional standards that exclusively focus on managing and safeguarding residents from abuse. Our analysis demonstrates a complexity that has enormous potential to inform future research that is critically needed for the development of educational initiatives and to promote policy changes in this area.
Article
Background: Humans are occupational beings. Our occupational choices depend on the opportunities available to us, and within nursing homes, institutional rules or structures may limit occupational engagement. An everyday citizenship lens acknowledges the importance of people's rights as citizens as well as engagement in mundane aspects of the everyday, highlighting diverse expressions of agency. Aims/objectives: To show how older residents living with dementia in nursing homes can realize their everyday citizenship. Methods: A phenomenologically inspired ethnographic study was conducted in nursing home units in Norway, exploring everyday citizenship through narrative analysis. Results: Within everyday environments of care, the narratives of May, Janne and Camilla tell stories of spontaneous initiatives towards contribution and responsibilities, highlighting their continuous occupational natures. Conclusion: Becoming can be seen as constitutive of self and identity, through residents' actions and contributions within the mundane and ordinary of everyday life, as an essential part of everyday citizenship. Significance for practice: A citizenship of becoming presupposes that institutional perceptions of activities being offered ought to be broadened towards supporting residents' natural desires to do and act within the mundane and ordinary of everyday life.
Article
Background Malaysia will become an ageing nation by 2030; however, there is scarce published information about the outlook of published research literature on the older adults population with dementia in Malaysia. Hence, this scoping review is conducted to obtain an overview of research studies published in this area. Methods Articles containing relevant keywords were searched in PubMed, Embase and ScienceDirect electronic databases. Full-texts of relevant studies were retrieved and categorized into themes and subthemes adapted from Aging and Social Change Research Network. Results A total of 1116 studies were retrieved and after discarding duplicates and irrelevant studies, 47 studies were included. Analysis of the 47 collated studies successfully categorized approximately 74% of reviewed studies into the Medical Perspectives, followed by roughly 18% grouped into the Social and Cultural Perspectives, and around 8% sorted into the Public Policy and Public Perspectives theme. In addition, 16 out of 31 subthemes spanning all four major themes were identified as potential research gaps on dementia in the older adults population in Malaysia. Conclusions This scoping review provides an insight into the existing published literature on dementia in the older adults population in Malaysia. In addition, research communities will be able to better understand our needs in this topic, enabling the prioritization of research that aligns with identified gaps and priorities.
Article
Background Psychotropic drugs are often prescribed to manage behaviour that challenges in care home residents with dementia but contravene guidelines as evidence shows their use increases the risk of strokes and death. Therefore, a review is needed that conceptualises understanding of the pharmacological and non-pharmacological strategies implemented by care home staff to manage behaviour that challenges in dementia and the factors that influence decision-making. This knowledge is important to develop dementia guidelines to implement a sustainable non-pharmacological approach to support residents with behaviour that challenges. Aim To review qualitative studies to synthesise understanding of strategies implemented by care home staff to manage behaviour that challenges in dementia. Methods This systematic review involved a synthesis of qualitative data (PROSPERO protocol registration CRD42020165948). Searches of three electronic databases, PubMed, PsycINFO and CINAHL were conducted from inception until July 2021, supplemented by grey literature searches. Studies were included if they used qualitative methods and explored how care home staff respond to behaviour that challenges; data exploring other aspects of dementia care were excluded. Study quality was assessed using the Critical Appraisal Skills Programme checklist. Thematic synthesis was used to conceptualise understanding of the strategies implemented by care home staff to manage behaviour that challenges in dementia. Findings In total 1151 records were identified of which 34 studies were included in the review. Three themes emerged, ‘Putting out the fires’, refers to reactive strategies, implemented by staff to quell behaviour that challenges. However, if these strategies fail, staff may resort to pharmacological approaches for convenience to suppress these behaviours. The theme ‘Personhood, human rights and respect’ highlights the need for people with dementia to feel valued and useful by engaging residents in meaningful activities. Furthermore, the theme “Person focused approach – A paradigm shift’ reflects changes in culture, required to implement non-pharmacological strategies to behaviour management these include staff training, collaboration and equitable decision-making. Conclusions This review has identified strategies used by care home staff to manage behaviour that challenges. Non-pharmacological approaches to support residents with behaviour that challenges require staff training in behaviour management and psychotropic medicine management as part of their formal education program, and enhanced opportunities for collaboration and decision-making. In addition, residents should receive person focused support to facilitate participation in meaningful activities. These findings will be beneficial in developing guidelines to implement sustainable non-pharmacological approaches to manage behaviour that challenges in dementia. What is already known ▪Most care home residents with dementia exhibit behaviour that challenges including agitation and aggression. ▪Psychotropic drugs are often used to manage behaviour that challenges but are associated with an increased risk of stroke and death in people with dementia; hence, the National Institute for Health and Care Excellence (NICE) guideline on Dementia (2018) recommends taking a non-pharmacological approach. ▪It is imperative to synthesise understanding of the strategies used by care home staff to manage behaviour that challenges and the factors that influence decision-making in order to inform the development of dementia guidelines to facilitate implementation of non-pharmacological strategies to support residents. What this paper adds ▪This systematic review has conceptualised understanding of strategies implemented by care home staff to manage behaviour that challenges; this knowledge is important to assist development of guidelines, such as the NICE guideline on Dementia (2018) to enable implementation of non-pharmacological approaches to behaviour management. ▪This review has identified person focused support as an important strategy to reduce behaviour that challenges by supporting residents with dementia to engage in meaningful activities and occupation, tailored to their personal history. ▪Changes in care home culture and staff attitudes will be required to implement non-pharmacological strategies; this review recommends that care home staff are trained in managing behaviour that challenges and psychotropic medicine management and have opportunities to participate in multidisciplinary collaboration and equitable decision-making.
Article
This study explores interpretations of interpersonal aggression involving older adults, through an analysis of semi-structured interview data from 13 assisted living (AL) tenants and 19 AL service and/or care workers. Differing relations (tenant-tenant and tenant-worker) shape the kinds of tenant actions experienced as problematic and/or aggressive. Tenants and workers invoke communal living, aging, and dementia as explanatory frames, in part to mitigate victimization experiences through normalization and neutralization. This was more prominent among workers, who are less able to enact empowering responses as they sought to keep working in difficult circumstances. Structural constraints, and the power and social hierarchies that contribute to victimization, generate interpretive responses that obscure fulsome and contextualized understandings of the problem while further reinforcing oppressive discourses including a sense of the inevitability of aggression in older adults-especially those living with dementia.
Article
Full-text available
Management of behavioral symptoms of Alzheimer's disease and other progressive degenerative dementias poses continuous challenge to both family and professional caregivers. Behavioral symptoms are complex in nature and require that caregivers understand their presumed causes and intervene appropriately using validated caregiving techniques. Unfortunately, confusing terminology hampers improvement in management techniques. This review attempts to clarify terminology and specifically the behavioral symptoms "agitation" and "resistiveness to care" that require different management techniques. Several conceptual frameworks for behavioral symptoms of dementia are presented. These frameworks include behavioral models, a psychiatric model, and a comprehensive model that combines both behavioral and psychiatric strategies. Using precise terminology consistently and providing care based on a conceptual framework will facilitate the education of caregivers in appropriate techniques for management of behavioral symptoms of dementias.
Book
Dementia has been widely debated from the perspectives of biomedicine and social psychology. This book broadens the debate to consider the experiences of men and women with dementia from a sociopolitical perspective. It brings to the fore the concept of social citizenship, exploring what it means within the context of dementia and using it to re-examine the issue of rights, status(es), and participation. Most importantly, the book offers fresh and practical insights into how a citizenship framework can be applied in practice. It will be of interest to health and social care professionals, policy makers, academics and researchers and people with dementia and family carers may find it revitalising.
Book
Ethnography of a geriatric hospital and daycare center dealing with dementia patients. Describes how beginning in the early 1980s the Alzheimer's disease movement served to change the local descriptive practices of people-processing from caring for normal aging ("oldtimers") to responding to disease ("Alzheimer's").
Chapter
In this chapter I shall be exploring the concept of praxis and its applications in the context of selected leisure activities as understood by writers and researchers in the domain of cultural studies. I first sketch out the meaning of the concept of praxis in general terms before settling on the notion that it can be understood not only as an overcoming of theory and practice but also as a kind of ‘situated creative doing’. Subsequently, I seek to illustrate this process through a somewhat whirlwind tour of the debates in cultural studies about watching television, consuming commodities and developing youth subcultural style.
Book
Qualitative Methods for Family Studies and Human Development serves as a step-by-step, interdisciplinary, qualitative methods text for those working in the areas of family studies, human development, family therapy, and family social work. Providing a systematic outline for carrying out qualitative projects from start to finish, author Kerry J. Daly uniquely combines epistemology, theory, and methodology into a comprehensive package illustrated specifically with examples from family relations and human development research.