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Logo of nihpaAbout Author manuscriptsSubmit a manuscriptHHS Public Access; Author Manuscript; Accepted for publication in peer reviewed journal;
 
Res Gerontol Nurs. Author manuscript; available in PMC 2013 April 1.
Published in final edited form as:
PMCID: PMC3161167
NIHMSID: NIHMS263372

Failure to Identify Behavioral Symptoms of People with Dementia and the Need for Follow-Up Physical Assessment

Christine R. Kovach, PhD, RN, FAAN, Professor, and Methods Director, Brent R. Logan, PhD, Associate Professor, Laura L. Joosse, RN, PhD, Assistant Professor, and Patricia E. Noonan, MSN, GCNS, BC, Gerontological Clinical Nurse Specialist

Abstract

This descriptively designed study examined sensitivity and specificity of staff nurses identification of behavior change in nursing home residents with dementia. Behavior changes and whether further physical assessment was indicated were described and compared to judgments made by one expert advanced practice nurse. The convenience sample included 155 residents and 38 staff nurses from eleven nursing homes. Verbal symptoms and body part cues were the most prevalent behaviors regardless of the assessor. Sensitivity, or probability of identifying a real behavior change, was generally low for the staff nurses, ranging between 35–65% for the different types of behaviors, while specificity was quite high at over 95%. Additional assessment was felt to be needed for 51% of residents by the staff nurse and for 73% of residents by the expert. This study found that staff nurses are under-identifying behavior changes and the need for additional physical assessment.

Publication of the Need-Driven Dementia Compromised Behavior (NDB) model in 1996 shifted the perception that dementia behaviors (DBs) were problems to be controlled to an acknowledgement that changes in behavior may signal a physical problem or other unmet need (Algase et al., 1996). The NDB model states that both background factors (e.g. neurological, cognitive, psychosocial) and proximal factors (e.g. personal, physical, social) may precipitate and contribute to dementia behaviors. Kovach, Noonan, Schlidt & Wells (2005) extended the NDB model by explaining that when behaviors that are caused by unmet needs go unnoticed, are dismissed, or are not understood as symptoms of unmet needs, critical needs of the person with dementia are left untreated and unresolved. The purpose of this study was to describe and compare the identification of changes in behaviors and decisions regarding the need for follow-up physical assessment by staff nurses versus an expert advanced practice nurse. The research questions are:

  1. What is the sensitivity and specificity of staff nurses identification of verbal symptoms, nonspecific vocalizations, motor agitation and body part cues in nursing home residents with dementia?
  2. What is the sensitivity and specificity of staff nurses judgment regarding the need for follow-up physical assessment when behavior change occurs in nursing home residents with dementia??

For people with dementia who lack the ability to interpret and verbally report physical symptoms, changes in behavior may be an indicator of an emerging physical problem. Researchers have been able to show clear relationships between pain and behaviors such as aggressiveness and resistiveness to care (Beck, Baldwin, Modlin, & Lewis, 1990; Feldt, Warne, & Ryden, 1998; Ryden, Bossenmaier, & McLachlan, 1991; Mahoney et al., 1999). Nonspecific vocalizations such as repetitive calling out and moaning have been associated with an acute state of unmet need (Beck & Vogelpohl, 1999). In one study behavior change was a presenting symptom for pneumonia, urinary tract infection, musculoskeletal pain and neuropathic pain (Kovach, Cashin, & Sauer, 2006). The most common DBs reported are vocal complaints, restless body movement, facial grimacing, resisting care, aggression, nonverbal vocalizations, exiting behavior, tense body parts, rubbing a body part, shifting weight when seated, protecting a part of the body when moving, and slow movement (Kovach, Noonan, Griffie, Muchka, & Weissman, 2001; Feldt, 2000; Zwakhalen, Hamers, & Berger, 2006).

In a study reported elsewhere (Kovach et al., 2006), we found that even after education in the importance and recognition of behavior change, nurses only identified behavior change for 52 percent (n = 115 of 223) of the eligible sample over 8 weeks of observation. This low rate of identifying changes in behavior led us to question if there was a problem with nurses’ ability to recognize behavior change or nurses’ determination that a specific behavior change required follow-up physical assessment. The rationale for using the NDB model is that the model explains that behaviors are meaningful and that dementia behaviors may be symptoms of unmet physical needs. The rationale for doing this study is that if nurses are under-identifying behavior change and the need for physical assessment in this population, this information may help to inform the design of corrective interventions that will improve care for people with dementia.

METHODS

We report here a secondary study conducted within a randomized experiment studying the efficacy of an assessment and treatment protocol for people with moderate to severe dementia that have a behavior change (Kovach, Noonan, Schlidt, & Wells, 2006). All nurses participating in this secondary study received enhanced education on behavior change and the assessment and treatment protocol being tested in the larger efficacy study (http://projectreporter.nih.gov/project_info_details.cfm?aid=7743788&icde=4752118). Nurses were taught that dementia behaviors may be symptoms of unmet needs and were taught about various types of dementia behaviors such as nonspecific vocalizations, motor agitation, passive behavior and body part cues. In addition, nurses were taught that descriptions of verbal symptoms and dementia behaviors may be important clues for physical problems such as pain, infection or exacerbations of chronic conditions. The need for behavior change or verbal symptoms to be followed by physical assessment was emphasized.

Within one week of attending the 8-hour training program, an advanced practice nurse with extensive experience working with residents with dementia, met with the consenting staff nurse. The staff nurse provided a written description of the baseline behaviors of each resident participant on their unit. For example, a resident’s baseline behavior may have been described as “frequent calling out in the morning,” “frequently restless,” or “resistive during baths and transfers.” The expert nurse then shadowed the staff nurse, following him or her as the person performed their nursing roles. This shadowing of the staff nurse occurred on one day for approximately two hours during the midmorning time period after breakfast and before lunch is served. Both the staff and expert nurse independently recorded a description of any behavior demonstrated by a resident enrolled in the study that was perceived to be a change from the baseline information provided by the staff nurse. The staff and expert nurse independently determined whether or not the behavior change specifically indicated a need for further physical assessment of the resident.

Resident participants were from eleven nursing homes in the Midwest and a total of 155 people with dementia participated. Written consent was obtained from the Durable Power of Attorney and verbal assent was obtained from the resident. Residents had an average age of 87.21 (SD = 7.08) and length of stay of 33.06 months (SD = 30.11). The sample had severe cognitive impairment, with an average mini mental status exam score of 6.64 (SD = 5.90) (Folstein, Folstein, & McHugh, 1975). Most subjects were Caucasian (n = 151) and there were 125 females and 30 male participants. Number of years of formal education ranged from 0 to 22 years (M = 12.0, SD =3.11). Excluded from the study were people with chronic psychiatric illnesses other than the condition identified as causing dementia and those who had been admitted to the nursing home within four weeks.

Thirty eight nurses (26 LPNs, 12 RNs) were asked to participate based on working day shift fulltime on one of the units that housed resident participants. All 38 provided written informed consent. The majority were female (n = 37), Caucasion (n = 28), and over age 45 (n = 24). Only 8% (n = 3) had been nurses for less than five years but 34% (n =13) had been employed in a setting providing care to people with dementia for less than five years.

Coding and Analysis of Shadowing Data

The staff and expert nurse’s descriptions of behaviors were coded by a research assistant into SPSS as present or absent for each participant using the following a priori categories: nonspecific vocalization, verbal symptom, motor agitation, passive behavior and body part cues. Nonspecific vocalizations were defined as sounds that do not clearly communicate a specific message or need and do not appear to be a by-product of events experienced by the individual at that time (e.g. crying, calling out, repetitive verbalizations). Verbal symptoms were verbal communications of a logical and decipherable complaint, request or need (e.g. my back hurts) (Scherder and Bouma 2000; Closs et al. 2004). Motor agitation was movement that did not appear to be purposeful or a by-product of events experienced by the individual at that time. (e.g. pacing, resistive, restlessness) (Feldt 2000; Mahoney et. al, 1999). Passive behaviors were defined as a decrease in movement, response to human emotions, interaction with people or the environment (e.g. withdrawal) (Colling, 2000). Body part cues were defined as movements or tension in specific muscles that did not appear connected to current events (e.g. facial grimacing, clenched jaw, rubbing or holding body parts) (Kovach, Cashin & Sauer, 2006). Interrater reliability of coding was .80 for nonspecific vocalizations and motor agitation, .90 for body part cues and 1.0 for passive behavior, verbal symptoms, and decisions regarding implementation of the STI.

Assessments done by the expert were used to describe prevalence of behaviors and if behaviors co-occurred. Prevalence of each category of behavior was described using frequencies and percents. The association between different types of behavior was tested for each pair of types of behavior by first constructing a two by two contingency table, and then applying Fisher’s Exact test to determine pairwise associations.

The relationship between the staff nurse assessment and the expert advanced practice nurse identifications of behaviors change were described using sensitivity and specificity, with the expert as the gold standard. Sensitivity refers to the proportion of residents identified as having a particular behavior by the staff nurse, among the residents identified as having that behavior by the expert. Specificity refers to the proportion of residents identified as not having a particular behavior by the staff nurse, among the residents identified as not having that behavior by the expert.

RESULTS

Prevalence of identifying different types of behavior change is summarized in Table 1. The most frequently identified behaviors, either by a staff nurse or an expert, were verbal symptoms (20.0% and 28.4% for staff nurses and expert) and body part cues (12.9% and 27.1% for staff nurses and expert). Only 7% of residents were identified by staff nurses as having more than one type of behavior change, and 20% of residents were identified by the expert as having multiple behaviors. Additional assessment was felt to be needed for 51% of residents by the staff nurse and for 73% of residents by the expert.

Table 1
Prevalence of behavior changes detected by staff nurse and expert

The associations between having different types of behavior changes co-occur were examined separately for the staff and expert nurse assessments. There were no statistically significant associations between the occurrence or identification of any two behaviors.

Sensitivity and specificity are shown in Table 2 for each type of behavior. Sensitivity is generally low, between 35–65% across the different types of behaviors. Specificity is generally quite high, between 95.2–99.2% across all of the different types of behaviors. The sensitivity and specificity in terms of identifying a need for additional assessment are 62% and 79% respectively.

Table 2
Sensitivity and specificity

DISCUSSION

The most common behavior changes identified in this study were verbal communications of a logical and decipherable complaint, request or need. Some people in this sample clearly retained the ability to verbally report symptoms. Implications of this finding are that nurses should continue conducting subjective assessments of symptoms and symptom distress for people with moderate to severe dementia. Body part cues were also common and suggest the need for nurses to conduct regular careful inspections for changes such as facial grimacing, tenseness of specific muscle groups and rubbing or guarding specific parts of the body.

Staff nurses in this study under-diagnosed behavior changes in residents with dementia and the need for physical assessment. Since multiple studies have shown that behavior changes are associated with acute physical conditions and exacerbations of chronic conditions, failure to identify behavior change and to have that behavior change trigger additional physical assessment may lead to delays in diagnosis of physical problems. Delayed treatment of physical problems is associated with substantially higher costs of care, increased hospitalization and poorer health outcomes (Carter & Porell, 2003; Loeb et al, 2006; Kuo, Zhao, Weir, Kramer, & Ash, 2008).

Limitations of this study include a relatively small convenience sample which decreases generalizability of findings. The fact that observations by the staff nurses occurred while they were providing care and the expert was only charged with the task of observing residents may have accounted for some of the differences in observed behavior. Also, while the time the nurse shadowed the nurse was two hours, the time each resident was observed was not measured or controlled and could have influenced results. More explicitly stated, the lack of control of timing of measures included timing of assessments based on convenience, no consideration for individual peak periods of activity and no randomization of observational periods.

CONCLUSION

This study suggests that a key problem that people with later stages of dementia face in getting their needs met may begin as a communication problem. When behavior change is unnoticed, dismissed, or not understood as a possible symptom of unmet need, critical needs of the older adult with dementia may be missed. When needs are not identified, the need is likely to be untreated and unresolved. This disconnect between identifying behavior change and the need for further physical assessment may place people with dementia at increased risk for having their needs unmet and for delayed identification of emerging physical problems.

Acknowledgments

This study was funded by DHHS PHS NIH NINR 5R01NR07765, DHHS PHS NIH NINR. 1P20NR010674

Contributor Information

Christine R. Kovach, Self-Management Science Center, University of Wisconsin-Milwaukee.

Brent R. Logan, Medical College of Wisconsin.

Laura L. Joosse, University of Wisconsin-Milwaukee.

Patricia E. Noonan, Columbia St. Mary’s, Milwaukee, WI.

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