International Psychogeriatrics: page 1 of 7 C ?International Psychogeriatric Association 2014
Observational themes of social behavioral disturbances in
Joseph P. Barsuglia,1Frances R. Nedjat-Haiem,1Jill S. Shapira,1,2Christina Velasco,2
Elvira E. Jimenez,1,2Michelle J. Mather1,2and Mario F. Mendez1,2,3
1Veterans Health Administration Greater Los Angeles Healthcare System, Neurobehavior Service (116AF), Los Angeles, California, USA
2Department of Neurology, David Geffen School of Medicine, University of California, Los Angeles, California
3Department of Psychiatry & Biobehavioral Sciences, David Geffen School of Medicine, University of California, Los Angeles, California
Background: Caregivers report early disturbances in social behavior among patients with behavioral variant
frontotemporal dementia (bvFTD); however, there are few direct observational studies of these social
behavioral disturbances. This study aimed to identify social behavioral themes in bvFTD by direct observation
in naturalistic interactions. The identification of these themes can help caregivers and clinicians manage the
social behavioral disturbances of this disease.
Methods: Researchers observed 13 bvFTD patients in their homes and community-based settings and
recorded field notes on their interpersonal interactions. A qualitative analysis of their social behavior was
then conducted using ATLAS.ti application and a constant comparison method.
Results: Qualitative analysis revealed the following themes: (1) diminished relational interest and initiation,
indicating failure to seek social interactions; (2) lack of social synchrony/intersubjectivity, indicating an
inability to establish and maintain interpersonal relationships; and (3) poor awareness and adherence to
social boundaries and norms. These themes corresponded with changes from caregiver reports and behavioral
Conclusion: This analysis indicates that real-world observation validates the diagnostic criteria for bvFTD
and increases understanding of social behavioral disturbances in this disorder. The results of this and
future observational studies can highlight key areas for clinical assessment, caregiver education, and targeted
interventions that enhance the management of social behavioral disturbances in bvFTD.
Key words: Behavioral variant frontotemporal dementia, social behavior in dementia, observational study, intersubjectivity in dementia, early
(bvFTD) is a neurodegenerative disease that results
in social behavioral disturbances. BvFTD strikes
the neural regions involved in social behavior
including emotional expression (Joshi et al., 2014),
social bonding (Mendez et al., 2013a), empathy
(Rankin et al., 2005), theory of mind (Pardini
et al., 2013), and awareness of self and others
(Mendez and Lim, 2004). Individuals with bvFTD
commonly violate social or moral norms and
fail to appreciate the impact of their actions on
others (Mendez and Shapira, 2011). For the
variant frontotemporal dementia
Correspondence should be addressed to: Joseph P. Barsuglia, PhD, Neurobehavior
Service (116AF), West Los Angeles VA Healthcare Center; 11301 Wilshire
Blvd, Los Angeles, CA 90073, USA. Phone: +(310) 478-3711; Ext.: 42393;
revision requested3 Mar 2014; revisedversion received22 Mar 2014; accepted
18 Apr 2014.
family members and caregivers of bvFTD patients,
disturbances in social behavior are associated
with significant caregiver burden and depression
(Passant et al., 2005; Diehl-Schmid et al., 2013).
The social disturbances in bvFTD pose unique
challenges in recognition and diagnosis. Most
information on these disturbances come from
caregiver reports, rather than direct examination
or observation. The patients themselves lack
insight into their behavioral changes and fail to
report them. Therefore, the diagnosis of bvFTD
usually depends on the availability and accuracy
of reports of patients’ social behavior. Moreover,
in the clinic, providers often fail to recognize that
changes in social behavior indicate symptoms of
dementia, which may lead to delayed or incorrect
The recognition of social behavioral disturbances
in bvFTD is most evident in descriptive, qualitative
J. P. Barsuglia et al.
investigation involving direct observation of their
social interactions (Mendez et al., 2013b). For
example, one observational study of bvFTD
found more pervasive environmental dependency
behaviors among bvFTD patients compared to
those with Alzheimer’s disease (AD) (Ghosh et al.,
2013). Another observation study found that
and initiate interactions, and a lack of concern
with meeting clinicians’ expectations were prevalent
in bvFTD (Rankin et al., 2008). In one of the
few observational studies in naturalistic settings in
bvFTD, investigators found significantly decreased
“you” comments and tact and manners among
those with bvFTD as compared to those with AD
(Mendez et al., 2013a).
The aim of the current study is to expand on
this literature by utilizing behavioral observation
and qualitative methodology to identify the social
categories or themes disturbed in bvFTD in
natural settings. The presence of social behavioral
disturbances are most evident and valid when
observed in patients’ most natural and familiar
settings, such as their homes (Black and Rabins,
2007; Han et al., 2013). Thus, among patients
with bvFTD, the current study predicts real-world
disturbances in basic social themes, which can be
targeted for improvements in the diagnosis and
management of these patients.
Behavioral Neurology Clinic upon approval from
the Institutional Review Board. The participants
completed clinical neurobehavioral, neuropsycho-
logical and neuroimaging evaluations. Patients
with severe comorbid medical, neurologic, or
psychiatric disorders were excluded. The bvFTD
participants (n = 13) were diagnosed based
upon revised International consensus diagnostic
criteria for bvFTD (Rascovsky et al., 2011) and
supported by frontotemporal hypometabolism on
fluorodeoxy-glucose positron emission tomography
imaging. The clinical features of bvFTD was
further characterized by the Clinical Dementia
Rating Scale (CDR) (O’Bryant et al., 2010), the
Functional Activities Questionnaire (FAQ) (Pfeffer
et al., 1982), the Center for Epidemiologic Studies
Depression Scale (CES-D) (Carleton et al., 2013),
the Neuropsychiatric Inventory (NPI) (Cummings
et al., 1994), and the Frontal Systems Behavior
Scale (FrSBe) (Grace and Malloy, 2001).
Onsite. Observation of participants occurred in
social interactions associated with three separate
research visits, but outside of formal testing
scenarios. Researchers took walks (n = 6), ate meals
and snacks (n = 8), and spent time in waiting
rooms with patients and their caregivers (n = 11).
A single researcher also visited each participant one
to three times for three to four hours each visit,
including: personal homes (n = 12), residential
neighborhoods (n = 6), local parks (n = 4), car
rides (n = 3), coffee shops (n = 3), department
stores (n = 2), bus stops (n = 2), and restaurants
(n = 2). Researchers documented observations
directly afterward in field notes and audio-
recorded memos, and strove to utilize descriptive
and objective language in recording interactions
to reduce bias. Reflexive statements involving
observational views about patients’ behaviors were
documented in order to recognize and exclude any
researcher interpretation of the data during data
CODING AND THEME DEVELOPMENT
The total textual corpus of field notes included
40 documents comprising 74 single-spaced pages
were transcribed in ATLAS.ti (a qualitative data
analysis software package). A team of independent
raters, not involved in data collection reviewed
the textual corpus for emergent patterns using
open, line-by-line coding to develop a codebook of
rater team utilized an iterative process of written
memos and audit trail of emergent concepts
to identify unrecognized concepts not previously
captured in the coding process. Concepts were
regarded as essential if they described social
phenomena and recurred throughout the field notes
and across participants. A constant comparison
method (Glaser, 1992) was utilized to identify and
tag subsequent themes. Axial coding combined an
inductive and deductive process to sort and sift
data, as well as describe and condense concepts
into broader themes (Eaves, 2001; Charmaz,
2006; Corbin and Strauss, 2007). The code-
building process concluded upon consensus that
the list of codes captured the most inclusive and
comprehensive framework regarding the specified
study aims. Once the corpus reached saturation
through constant comparison, the entire transcript
text was exported from ATLAS.ti at the theme and
Observational themes of social behavior
Table 1. Participants demographics (Total n = 13)
Estimated age of onset
Time since onset (years)
Mini-mental state examination
Clinical dementia rating global score
Clinical dementia rating sum of boxes
Functional Activities Questionnaire
Center Epid. Studies Depression Scale
Appetite/ Eating changes
Aberrant motor behavior
Frontal Systems Behavior Scale
Clinical features of the sample (see Table 1)
The bvFTD group was composed of 5 women
and 8 men and were 85% White. The dementia
severity of the group was mild to moderate on the
CDR with impairment in independent completion
of instrumental activities of daily living on the
FAQ. The CES-D was not indicative of significant
depression, but the NPI disclosed five com-
mon neuropsychiatric symptoms: appetite/eating
changes (n = 12), apathy/indifference (n = 12),
aberrant motor behaviors (n = 12), disinhibition
(n = 12), and agitation/aggression (n = 7). On
the FrSBe, participant caregivers reported pre- to
post- disease increases in apathy, t(11) = 10.60, p <
0.001, disinhibition, t(11) = 3.54, p < 0.001, and
executive dysfunction t(11) = −9.11, p < 0.001
(Total Score pre- to post- change was t(11) = 8.69,
p < 0.001)
Three main social themes with their common
subthemes were generated from iterative category
development (See Table 2). These three main
themes were (1) Diminished relational interest
and initiationin seeking
(2) Lackof socialsynchrony/intersubjectivity
(establish, maintain relationships); and (3) Poor
awareness and adherence to social boundaries
and norms. Descriptions of the three themes are
provided below along with italicized examples listed
below were deemed most representative for their
Diminished relational interest and initiation
in seeking social interactions
This category pertained to initiation of social
and attachment/ proximity seeking behaviors. This
theme differs from the subsequent theme, lack of
social synchrony/ Intersubjectivity, as this category
was specific to the primary or initial demonstration
of social drive, described as an impetus to
begin an interaction. The construct conceptually
corresponds with attachment seeking behavior, and
FAILED SOCIAL ENGAGEMENT
On multiple occasions, participants demonstrated
lack of social connection, leaving others feeling
unheard, ignored, and relationally frustrated, for
example: Mr. A was involved in a card game but
doesn’t seem to care what is going on during the
game. . . He isn’t paying attention to the game; he
seems careless. . . He never reacts to being corrected [i.e.
multiple attempts by others to engage his interest in the
IGNORES/DISINTERESTED IN QUESTIONS
the researchers’ or family members’ questions. The
[female] participant is very concentrated on this puzzle
and she does not take her gaze off of it [even when others
are having conversations]. She did not look around or
instances in which
J. P. Barsuglia et al.
Table 2. ATLAS.ti major themes and subthemes
(1) Diminished relational interest and initiation in seeking social interactions
Fails to socially engage
Ignores/ disinterested in questions
Does not initiate conversation
Absence of appropriate relational affect
Lack of initial concern for others
(2) Lack of Social Synchrony/Intersubjectivity (establish, maintain relationships)
Abnormal social responses
Short answers, brief or impoverished verbal content
Absence of questions about self and others
Lack of empathic responding
Triggers frustration in relationship/observer
(3) Poor Awareness and Adherence to Social Boundaries and Norms
Unawareness of correct social boundaries or distances (Verbal or Nonverbal )
Inappropriate bathroom behavior
Absence of politeness (e.g. use of please and thank you)
Violations of table manners
make eye contact with family members when they called
DOES NOT INITIATE CONVERSATION
The participants often failed to initiate con-
versations or interject themselves into ongoing
conversations, showing a lack of relational interest.
He had a somewhat blank, direct look when I first
walked in [to meet him]. No smile recognition, [no
change in his face, in response to my presence]. In
response to [my greeting] “I’m [name]”, he said “ok”
with no smile or change in expression.
Lack of social synchrony/intersubjectivity
(establish, maintain relationships)
The theme focuses on behaviors involved in
establishing and maintaining the reciprocal sending
and receiving of signals in social interaction.
Examples of this theme include the length and
depth of interactions, the degree of engagement,
the presence of empathic responses, and the
appropriateness or thoughtfulness of responses.
ABNORMAL SOCIAL RESPONSES
This subtheme included un-prefaced or tangential
interruptions or interjections to conversation or a
failure to respond in a manner that facilitated or
sustained an interaction. [Participants often made
interjections that seemed to have salience to the
participant or, alternatively, left dead space or long
uncomfortable pauses in the conversation].
SHORT ANSWERS, BRIEF OR IMPOVERISHED
Participants demonstrated an inability to maintain
social synchrony in giving short, blunt replies.
Interlocutor: Why don’t you show me one of the
grandkids [photo albums]? Participant: [to spouse,
Interlocutor: [Nonverbally motioned with interest in
seeing photo album of family.] Participant: [flipped
through photo album quickly, said some people’s names
but rarely gave context; gave no stories or commentary
about what was happening in the photos, despite
researcher’s verbal and nonverbal expression of interest].
ABSENCE OF QUESTIONS ABOUT SELF AND
This subtheme includes inappropriate, intrusive,
tangential, or perseverative inquiries about subjects.
The participant asked repetitive questions to the
researcher such as, “Are you Chinese? Do you have
a boyfriend? [did not wait for or monitor researcher’s
response between questions] Are you Asian?. . . Thrilla
in Manila [tangential reference to historic boxing match
in Philippines]. . . “You can see I like Asian women
[pointing to his own wife].”
LACK OF EMPATHIC RESPONDING
between conversational content and their affective
responses, such as a failure to offer empathic
gestures or words of consolation in response to
family members’ distress. While a family film was
playing, B’s wife began to cry. He looked at his wife
Observational themes of social behavior
and did not exhibit a response to his spouse’s crying or
initiate any signs of affection [no attempt to comfort
her]. . . [But] there was a time when B wasn’t like this,
before the onset of the disorder [per his wife].
Poor awareness and adherence to social
boundaries and norms
norms such as physical boundaries, manners, and
appropriate use of humor in social situations.
UNAWARENESS OF CORRECT SOCIAL
BOUNDARIES OR DISTANCES (VERBAL
This subtheme included instances when parti-
cipants would abruptly and without explanation
walk away from an ongoing interaction (especially
in open spaces), intrude and violate another’s
physical space, or make inappropriate comments.
This patient would also shout out in the elevator “this
is ridiculous” a couple of times. . . stood in middle
of elevator that was crowded (spatially intrusive) and
blurted out “this is ridiculous and said “f∗ck” as they
were leaving an office. While on the elevator the patient
presses all the buttons with other individuals in the
INAPPROPRIATE HUMOR OR LAUGHTER
This subtheme includes telling inappropriate jokes,
sharing humor only of relevance to the participant
(devoid of context), and unprompted laughter not
connected to any identifiable trigger. The participant
began laughing out loud for no apparent reason while
in an aisle at the store. The patient continued to laugh
and did not change his behavior; despite him seeing that
[others] appeared annoyed with him. He apparently did
not realize the effect he was having on them or that they
were responding to his laughing.
Participants over-disclosed personal information
pertaining to both themselves and family members
that would otherwise be private, such as family
secrets or private financial and medical information
(e.g., sexual orientation). He would make socially
inappropriate remarks like announcing in public
shopping settings [department store] “My grandson’s
girlfriend turned gay” or “I didn’t go [to an event]
because I had diarrhea. . . He also shared to strangers
that he, “loved ice cream, and has Pick’s disease, but
does not have diabetes.”
The current study provided concrete examples of
abnormal social behaviors in bvFTD that occurred
in a variety of real-life environments. Qualitative
analysis yielded three primary thematic behavioral
clusters which included (1) Diminished interest
and initiation in seeking social interactions; (2)
Lack of social synchrony (bonding or sustaining
attachments) (Atzil et al., 2013), and inter-
subjectivity (generating and sharing meaningful
experiences) (Allen and Williams, 2011); and
3) Poor awarenessand
boundaries and norms. These themes catalogue
specific behaviors illustrating the disconnection
between patients with bvFTD and others in
their environment and are consistent with their
neuropsychiatric symptoms and the apathy and
disinhibition seen on the NPI and FrSBe scales
(Mendez et al., 2008). These findings can facilitate
caregiver advice and education on the management
of these patients and help clinicians target their
BvFTD patients demonstrated an inability
from interactions, had intrusive behaviors, gave
indifferent responses (e.g., “I don’t care”), and
lacked relational curiosity. The group had trouble
sustaining the ebb and flow of sending and receiving
interactive communication signals inherent in
reciprocal socioemotional interactions. When they
were able to establish a degree of basic interaction,
the cognitive and affective depth of the interaction
was lacking and impoverished. BvFTD patients
were also typically unable to detect and/or respond
to cues of emotional discomfort or frustration in
observers, such as a failure to redirect prolonged
gazes after the receiver exhibited discomfort.
These results align with studies suggesting that
bvFTD patients exhibit difficulty responding to the
Assessing socioemotional deficits as part of a
diagnostic workup is essential, as these features
reliably distinguish bvFTD from other common
dementias such as AD (Mendez et al., 1998).
However, few appropriate clinical assessment tools
exist. The observational examples from this study
can be utilized to develop effective clinical methods
of assessing social deficits in these patients. The
current findings can serve as a paradigm for
generating observational tables, coding systems,
and quantitative methods for evaluating patients
with bvFTD, as well as other neurological disorders
characterized by disturbances in social behavior.
In addition to helping in the diagnosis of bvFTD,
clinicians can use these social behavioral themes
J. P. Barsuglia et al.
to educate caregivers and providers on potentially
disturbed behaviors. BvFTD patients have unique
caregiver needs compared to other dementias
(LoGiudice and Hassett, 2005; Nunnemann et al.,
2012). For example, caregivers can anticipate
social intrusions in more enclosed or smaller
spaces, whereas they must anticipate wandering
and difficulty maintaining physical interpersonal
proximity in more open spaces. Given the patient’s
lack of concern for their own and others’ privacy,
caregivers may choose to refrain from disclosing
new private or sensitive information to individuals
with bvFTD. Furthermore, caregivers can interpret
a patient’s social disinterest as a symptom of the
disease, rather than a willful choice to disengage.
The social behavior themes described in this study
can aid both caregivers and providers in meeting the
unique caregiving needs of bvFTD patients (Bakker
et al., 2013).
There were limitations to this qualitative study.
They included the potential for observer bias,
small sample size, and natural restrictions of
qualitative methods. Individual observer bias was
probably inevitable when choosing and recording
social behaviors during this observational study.
Because of the labor involved in observational
study of each participant, this study had a
small sample of 13 participants, and this sample
may not be representative of a larger bvFTD
cohort. Additionally, the qualitative nature of this
study limited the ability to establish frequency or
prevalence of behaviors across the entire sample.
In conclusion, this study describes observable
disturbances in major social behavioral themes
in bvFTD and validates the diagnostic criteria
for this disorder (Rascovsky et al., 2011). These
findings offer a source for future studies regarding
behavioral phenomena in bvFTD. In particular, the
use of observational research in natural settings may
advance the assessment of interpersonal behaviors
in this, and related disorders. Thus, future studies
using this approach may yield further information
regarding social functioning in bvFTD that can help
in the recognition and management of this disorder
(Mendez and Manes, 2011).
Conflict of interest
Description of authors’ roles
F. R. Nedjat-Haiem (FRN-H) (primary rater) and
C. Velasco (CV) (research assistant) analyzed data
and identified behavioral themes. J. Barsuglia (JB)
drafted the paper. M. J. Mather (MJM) contributed
to data collection and paper revision. Jimenez (EJ),
J. Shapira (JS), and M. Mendez (MM) contributed
to critical review and paper revision.
Funding though NIA Grant #R01AG034499-04;
Joseph P. Barsuglia is funded through the VA
Geriatric Research Education and Clinical Centers
Advanced Fellowship; Frances R. Nedjat-Haiem
is funded through the VA Associated Health
Postdoctoral Fellowship Program, and the Hartford
VA Social Work Scholars Program.
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