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Resistiveness to care is behavior which prevents or interferes with caregivers’ performing or assisting with activities of daily living and puts residents at risk for inappropriate use of antipsychotic drugs, other restraining interventions, social isolation and physical abuse. The purpose of this study was to establish the psychometric properties of a previously developed Resistiveness to Care measure.
This was a descriptive study using baseline data from an ongoing randomized controlled trial testing a Function and Behavior Focused Care (FBFC) intervention. Residents were eligible to participate if they were 55 years of age or older, had a Mini-Mental State Exam (MMSE) score of 15 or less, were not enrolled in Hospice or admitted for subacute care. Descriptive information included age, race, gender, cognitive status and marital status. In addition to the Resistance to Care Scale, the Barthel Index, the Physical Activity Survey in Long Term Care (PAS-LTC) and the Cohen-Mansfield Agitation Inventory (CMAI) were completed. Psychometric testing was done using Rasch analysis and the Winsteps statistical program.
The participants were moderate to severely cognitively impaired (MMSE of 7.23) functionally dependent (Barthel Index 47.31, SD 27.59) and engaged in only 134.17 (SD=207.32) minutes of physical activity daily. Reliability was supported based on a Cronbach alpha of 0.84 and the DIF analysis as there was no difference in function of the items between male and female participants. Validity was supported as all items fit the measurement model based on INFIT and OUTFIT statistics.
The findings support the reliability and validity of the Resistiveness to Care Scale for use with older adults with dementia in nursing home settings. Future work with the measure may benefit from the addition of items that are easier to endorse with regard to resistiveness to care (shutting eyes or spitting out food may be useful additions).
Resistiveness to care generally occurs when an individual with cognitive impairment interferes with caregivers’ attempts to provide care. There have been multiple definitions of resistiveness to care although most commonly it is defined as the “repertoire of behaviors with which persons with dementia withstand or oppose the efforts of a caregiver”1. Alternatively, resistiveness to care has been described as rejection of care2 or behavior which prevents or interferes with caregivers’ performing or assisting with activities of daily living, such as bathing, toileting and dressing3. Resistiveness to care most commonly occurs during personal care interactions such as when an attempt is made to bath, dress, provide oral care or help to transfer an older adult.
Resistiveness to care is one of the behavioral symptoms associated with dementia, although it is recognized as a symptom that may have additional contributing factors. Behavioral symptoms, including resistiveness to care are believed to be associated with a variety of factors, such as unmet basic needs such as hunger, pain or fatigue4; the way in which interactions occur with residents; the use of Elderspeak (i.e., infantilization or secondary baby talk)5 or simply due to the care recipient with dementia not recognizing others and refusing to engage with them and thereby resisting any interaction or care approach6. Direct care workers are usually the ones who experience resistiveness to care and unfortunately they often describe the resident as being aggressive or combative. The resident’s resistiveness to care can escalate or diminish depending on the response of the caregiver2.
Resistiveness to care is different than aggressive behavior or agitation. Agitation is “inappropriate verbal, vocal or motor activity that is not judged by an outside observer to be an obvious outcome of the needs or confusion of the individual”7. Agitation is behavior that occurs when the resident is alone and there is no care attempt or interpersonal interaction occurring. The term agitation should be reserved for behaviors that are not triggered by an interpersonal interaction or a stimulus, and are not due to an unmet need of the individual. Agitation is an indication that the individual with dementia is experiencing an unpleasant state of excitement for unknown reasons.
Resistiveness to care is generally conceptualized as observed behavior on the part of the caregiver or objective observer. Measurement of resistiveness to care is incorporated within the Minimum Data Set 3.0 (MDS) in Section E which focuses on behavior8. In earlier versions of the MDS, evaluators determined that residents were exhibiting resistiveness to care if the resident “resists care; resisted taking medications/injections, activities of daily living assistance or eating” within the last 7 days and whose behavior was not easily altered.”9 The current version of the MDS evaluation (MDS 3.0) refers to resistiveness to care behaviors as rejection of care and evaluators determine if the resident rejected evaluation or care (e.g., bloodwork, taking medications or activities of daily living assistance) that was necessary to achieve the resident’s goals for health and well-being. The frequency of resistiveness to care is also documented as occurring one to three days; four to six days but less than daily; or daily.
Another measure that is used to evaluate resistiveness to care is the Caretaker Obstreperous Behavior Rating Scale (COBRA)10. The COBRA Scale was developed to evaluate behaviors among older adults with dementia and includes 30 items classified into four categories: mechanical/motor (7 behaviors); aggressive/assaultive (8 behaviors); disordered ideas/personality (9 behaviors); and vegetative (6 behaviors). It is the aggressive/assaultive behaviors that address resistiveness to care. Evaluations by a caregiver include identifying the frequency of each behavior ranging from 0 (not in the last 3 months) to 4 (daily), and severity which ranges from 0 (no disruption) to 4 (danger).
Similarly, the Nursing Home Behavior Problem Scale11 was developed to assess the frequency of serious behavior problems in nursing home residents. This measure includes 29 items that most often precipitated the use of antipsychotic medication or physical restraint among nursing home residents. The rater reports the frequency of each behavior in the past 3 days on a 5 point scale from 0 (never) to 4 (always). Resisting care is one of the 29 behaviors evaluated. Thus the MDS, the COBRA and the Nursing Home Behavior Problem Scale all assess general behavior among nursing home residents and include at least a single item to consider resistiveness to care.
In an attempt to focus measurement of behaviors comprehensively on resistiveness to care, the Resistiveness to Care scale was developed1. The items on the Resistiveness to Care Scale include behaviors exhibited by older adults with dementia that occur during care interactions with staff. Because resistive behaviors are more likely to occur during bathing, dressing, toileting, transferring or feeding, direct observation during care activities is required. The 13 resistiveness to care behaviors included within the measure were based on direct observations of residents and included turning away, pulling away, pushing away, pushing and pulling, grabbing an object from the caregiver, grabbing another person, adducting, hitting or kicking, saying no to care opportunities, crying, threatening the caregivers, screaming or yelling, and clenching the mouth during such things as eating or oral care.
Testing of the Resistiveness to Care scale was initially done with a sample of 68 residents with moderate to severe dementia and included 232 observations of those residents. The mean age of the residents was 72.8 (SD=7.7) and they were moderate to severely cognitively and functionally impaired. There was support for the internal consistency of the Resistiveness to Care scale based on an alpha coefficient of .821. There was evidence of criterion related validity based on a significant correlation between the Resistiveness to Care Scale and a global resistance scale using a visual analog scale with anchors of no resistiveness to extreme resistiveness (r=.74, p<.001). As anticipated, as the severity of dementia increased through the moderate to advanced stages, resistiveness to care scores were higher until very late in the disease when scores fell.
Resistiveness to care puts residents at risk for inappropriate use of antipsychotic drugs and other restraining interventions that can exacerbate resistiveness to care or increase risk of social isolation and physical abuse12–14. Conversely, there are behavioral interventions that can be used to help decrease resistiveness to care15. Specifically, these include optimizing function and physical activity during care interactions16,17, using Video Simulated Presence18, communicating appropriately, implementing individualized caregiver approaches5,19,20, utilizing relaxation and reminiscence associated with care activities21 and making environmental adaptations to facilitate a more homelike setting for care22. To be able to continue to test appropriate non-pharmacological interventions designed to decrease behavioral and psychological symptoms of dementia and the ability of staff to maintain the use of these interventions over time, it is important to assure that resistiveness to care is being comprehensively evaluated and that the measure used is reliable and valid among the residents with dementia currently in nursing home settings. The purpose of this study, therefore, was to test the reliability and validity of the Resistance to Care measure using a Rasch Measurement Model among a larger group of nursing home residents with moderate to severe dementia.
This was a descriptive study using baseline data from an ongoing randomized controlled trial testing a Function and Behavior Focused Care (FBFC) intervention for nursing home residents with dementia. The first 268 consented residents were recruited from nine nursing homes, each of which had at least 100 residents. Residents were eligible to participate if they were 55 years of age or older, lived in the facility at the time of recruitment, had a Mini-Mental State Exam (MMSE)23 score of 15 or less and were not enrolled in Hospice or admitted to the facility for subacute, short term rehabilitation.
All potentially eligible residents were approached to complete the Evaluation to Sign Consent (ESC) as per the University of Maryland Institutional Review Board procedures and invited to participate in the project. If capacity was determined (i.e, if all items on the ESC were answered correctly) the resident could provide his or her own consent. If decisional capacity was impaired, then assent was obtained from the resident and the legally authorized representative was approached to complete the consent process. For potential participants who were unable to sign an assent form due to inability to follow a one-step direction and/or motor apraxia, but showed no signs of dissent (verbal refusal to answer a question, closing eyes and not responding, asking or motioning to the evaluator to leave, moving or turning away from the evaluator), assent was established and the evaluator proceeded to the Legally Authorized Representative to obtain consent on behalf of the resident.
From the nine nursing homes, 1,143 residents were approached and among these 10 were able to self-consent. For those residents who could not consent, 398 legally authorized representatives (LARs) were approached and 302 LARs consented so the total number of consented residents was 312. Of these 44 were deemed ineligible due to MMSE scores greater than 15 leaving a total of 268 consented and eligible residents. Prior to baseline data collection, two of these individuals died, one withdrew and one individual was transferred to another facility. Of the 264 consented residents observations for resistiveness to care were completed on 261 individuals and it is this data that was used in the psychometric testing of the scale. As shown in Table 1, the average age of the residents was 84.64 (SD=9.60) and the majority were female (N=198, 74%), white (N=161, 61%), and not married (N=185, 69%). The mean MMSE was 7.23 (SD=5.10).
All data collection at baseline was done by research evaluators with prior experience working with nursing home residents with moderate to severe cognitive impairment and their caregivers. All the measures were completed based on direct observation of the resident or input from the nursing assistant that was providing care to the resident on the day of testing.
Descriptive information for residents included age, race, gender, cognitive status (MMSE) and marital status. In addition function was evaluated based on the Barthel Index24, a 14 item measure that assesses an individual’s performance of basic activities of daily living including bathing, dressing, transferring, toileting and ambulating. Physical activity was measured subjectively using the Physical Activity Survey in Long Term Care (PAS-LTC)25. The PAS-LTC addresses the amount of time over a 24 hour period that the resident spent engaged in: Locomotion; Personal Care Activities; Structured Exercise; Recreational Activities; Caretaking Activities; and Repetitive Behavior. The Cohen-Mansfield Agitation Inventory (CMAI), Short Form was completed as well to evaluate resident agitation. The CMAI is completed by a proxy respondent and focuses on disturbing behaviors commonly found in long term care residents with dementia26. Higher scores indicate more evidence of agitation. All of these measures have prior evidence of reliability and validity when used with older adults.
The Resistance to Care Scale was completed by an objective evaluator. The evaluator observed care interactions over a 5 minute period. As per the original scale frequency of the behavior within the 5 minute observation period was documented as well as the duration, with duration response options including 0 (none), 1 (< 16 seconds), 2 (16 to 59 seconds), 3 (1 to 2 minutes), and 4 (> 2 minutes). Lastly intensity was evaluated with options being 1 (mild), 2 (moderate) or 3 (extreme). To complete the Rasch Analysis we revised the scoring to identify those who demonstrated the behavior (yes or no) by recoding duration of resistiveness to care behaviors such that there was either no behavior (0) or evidence of the behavior (initial scores 1–4 were recoded to 1 reflecting durations between <16 seconds to > than 2 minutes). The total number of resistiveness to care behaviors were then calculated by summing this revised coding with scores ranging from 0 to 13 resistiveness to care behaviors. In addition, for descriptive purposes, we summed the total number of times behaviors occurred within the 5 minute observation period (these summed scores ranged from 0 to 18).
Descriptive and correlation statistics were done to describe the sample using SPSS version 21. To evaluate the reliability and validity of the measure a Rasch analysis was done using the Winsteps statistical program.
Testing of the internal consistency of the Resistiveness to Care measure was based on the Rasch measurement model and item reliability and the item separation reliability index27. The item separation index defines how well items can be discriminated from one another on the basis of their difficulty and is analogous in interpretation to coefficient alpha. The closer the reliability is to 1.0 the less the variability of the measurement can be attributed to measurement error. An equivalent to the alpha coefficient of .70 was considered acceptable evidence of item reliability.
In addition to internal consistency a Differential Item Functioning (DIF) was done to establish if there was consistency in item function across genders. A DIF analysis is done to identify significant differences across group membership (in this case gender). The DIF analysis compares the proportion of individuals at the same ability level who answer a given item correctly (i.e., exhibit resistiveness to care). If an item measures the same ability in the same way across groups then, except for random variations, the same response rate should be found irrespective of the nature of the group. Items that give different success rates for two or more groups, at the same ability level, are said to display DIF28. We hypothesized that the measure would be consistent across genders.
Validity testing was based on construct validity of the measures and evidence that each item fit the data and was associated with the respective outcome. The Winsteps statistical program was used to establish item fit based on INFIT and OUTFIT statistics. INFIT and OUTFIT statistics were considered acceptable if in a range from 0.4 to 1.627. An INFIT or OUTFIT value of less than 0.4 indicates that the item may not provide additional information beyond the rest of the items on the scale. An INFIT or OUTFIT value of greater than 1.6 indicates that the item may not define the same construct as the rest of the items in the instrument, is poorly written and thus may have been misunderstood by participants, or is ambiguous29.
In addition to establishing item fit, item mapping was done using the Winsteps statistical program. Further support for the validity of the measures was based on evidence that the concept resistiveness to care was comprehensively addressed such that there were no individuals who were so high or so low in terms of resisting care that they were not well differentiated.
Lastly, validity testing for the Resistiveness to Care Scale was evaluated based on convergent validity. It was hypothesized that resistiveness to care would be associated with cognitive status and functional status, such that those who were more impaired cognitively and functionally would be more likely to exhibit resistiveness to care during activities of daily living15,22 and those who were more agitated would also be more likely to demonstrate resistiveness to care15,22. Bivariate correlations were used to test these associations and a significance level of p<.05 was used in all analyses.
Mean scores for all measures are shown in Table 1. Overall the participants were moderate to severely cognitively impaired (as noted a mean MMSE of 7.23) functionally dependent (Barthel Index 47.31 (SD 27.59) and engaged in only 134.17 (SD=207.32) minutes of physical activity throughout the course of the day. The participants demonstrated minimal agitation [CMAI 20.34 (SD 6.49)] and the majority had no evidence of resistiveness to care [N=186 (72%)]. Table 2 provides the frequency of the resistance to care behaviors that were demonstrated. The most prevalent behavior was saying no to care (N=43, 16%). Other resistiveness to care behaviors occurred at frequency rates that were < 10%.
Reliability testing of the Resistiveness to Care scale using the Rasch Measurement Model resulted in an Item Separation score of 2.25 and Item Reliability of 0.84 which translates to a Cronbach alpha of 0.84.
The DIF Analysis for gender is shown in Table 3. The p values were all greater than .05 indicating that there was not a statistically significant difference between function of the items across genders.
Item fit statistics are shown in Table 3. All of the items fit the model falling within the 0.4 to 1.6 range for INFIT and OUTFIT statistics. Item mapping order is also shown in Table 3. Saying no during a care interaction is the easiest resistiveness to care behavior for the resident to demonstrate. This was followed by screaming, crying, pushing away, grabbing an object or a person or pulling at an object or a person, clenching the mouth, turning, adducting, hitting or kicking, pushing or pulling. Threatening was the least likely behavior to be demonstrated. There were 210 individuals who were so low in resistiveness to care that they were difficult to differentiate. This suggests that there may be other behaviors that are being missed within the full spectrum of Resistiveness to Care.
As hypothesized there was a statistically significant association between Resistiveness to Care and cognitive status based on the MMSE such as that those who were less impaired exhibited less resistance to care (r=−.25, p <.01). Similarly, those who were more functionally independent exhibited less resistiveness to care (−.20, p<.01) and those who were more agitated exhibited more resistiveness to care (r=.27, p<.01).
This study provides support for the reliability and validity of the Resistiveness to Care Scale when used with a relatively large sample of older nursing home residents with moderate to severe dementia currently living in these settings. There was sufficient evidence of internal consistency with findings similar to the original scale development which was done with a non-independent sample of 68 younger residents (mean age of 72) providing 232 observations1 in which the alpha coefficient was .82. Our sample included 264 older adults each participating in a single assessment of the Resistiveness to Care Scale. These findings suggest that the measure initially developed and published in 1999 is reliable and valid when used with long stay nursing home residents with dementia that are currently living in these settings.
Psychometric testing using Rasch analysis supported the validity of the measure. All of the items fit the Rasch model based on INFIT and OUTFIT statistics. This suggests that the items were easily understood and the simple listing of behaviors was clear for all completing the measure. Mapping however indicated that the majority of the participants (210 or 80% or the participants) were so low in resistiveness to care that it was impossible to differentiate them. The addition of new items to better differentiate these individuals might include such things as shutting eyes and withdrawing as a way to resist care or interaction, expressions of sadness or anger, breaking objects so that care cannot occur, throwing the item at the caregiver such as throwing a drink or food at a caregiver during mealtimes.
Validity was also supported by the significant relationship between cognitive status, functional status and agitation and whether or not the individual exhibited resistiveness to care. Consistently, prior research has shown that those who were more cognitively impaired and were more functionally dependent were more likely to demonstrate resistiveness to care10,15. Likewise, prior research has also noted that patients who are fearful or agitated are more likely to demonstrate resistiveness to care10,15. Other factors that may influence resistiveness to care not considered in our validity testing included factors around staff behavior such as inadequate staffing, workload and time management, communications issues between staff and residents such as Elderspeak15,5,21, and environmental factors including noise levels, lack of privacy, temperature in the room, or invasion of personal space14. Future work may want to evaluate the relationship between these additional contributing factors to resistiveness to care as a way to further establish the validity of the measure.
One aspect of the observation of resistiveness to care that was not evaluated in this study or as part of the measure was the staff to resident interaction during the care interaction. Recent research30 has noted that there are certain caregiver behaviors that are likely to exacerbate resistiveness to care including deliberate negative statements and negative instruction (e.g., do not touch this or do not do that). Further, when the resident is already exhibiting resisitiveness to care there are certain interactions that exacerbate the behavior. These include moving forward with the physical contact needed to perform the care task, neutral statements by the caregiver that simply announce a care task but express no feeling or motivation, negative statements such as disagreement or disapproval, positive statements such as compliments, negative instruction such as telling the resident what not to do, or distraction such as attempt to sing. These findings could guide more advanced hypothesis testing in terms of determining the validity of the measure.
The most frequently noted resistiveness to care behavior occurred when the resident said no to a care interaction. While this has been included as a behavior associated with resisitiveness to care, it is not clear that these individuals fully understand what is occurring in the care interaction and may or may not even understand the meaning of no. Unfortunately, caregivers respond to the “no” as resistiveness to bathing, dressing, eating, transferring or ambulating or other basic care needs and in some situations will simply avoid providing the care. This places the individual at risk for hygiene related complications and functional decline. Although Person Centered Dementia Care is required as per the Centers for Medicare and Medicaid Services (CMS) National Partnership to Improve Dementia Care and Reduce Antipsychotic Use in Nursing Homes31 this approach is sometimes misinterpreted. Persons with dementia, particularly moderate to severe dementia, may not be able to reliably express their preferences for care in the ways in which cognitively intact or mildly impaired individuals can. There are ways in which to facilitate a person centered care approach for those with dementia that prevent resistiveness to care. These approaches include interacting with the individual in a kind, warm and gentle manner; building on their strengths and capabilities, and understanding that expressive speech may be lost, even more so than receptive speech16,17,32. Given challenges to language, particularly expressive language, it may not be appropriate to consider a verbal “No” as resisting care. Those who are functionally impaired are at greater risk of exhibiting resisitiveness to care and it is critical that these individuals be encouraged to engage in function and physical tasks and activities that occur during basic activities of daily living. Using approaches such as Function Focused Care that consider the individual’s underlying capability based on function and cognition have been shown to decrease behavioral symptoms and optimize function and physical activity16,17.
The strength of this study was that it included a large sample of nursing home residents across nine different settings of care. The settings, however, were all from a single state and were homogenous in terms of size. Although the participants all had moderate to severe cognitive impairment, the actual frequency of resistiveness to care behaviors was low. We anticipate that those individuals with the greatest likelihood of exhibiting resistiveness to care may not have assented to participate in the study thus biasing the sample.
Although the Resistiveness to Care scale was completed based on direct observation of the resident during a care interaction, the observation was for a single five minute period. This may have resulted in missed behaviors throughout the day. The functional measure completed in this study was obtained via proxy report and thus may have been biased by what direct care workers performed for the resident versus what the resident was able to perform.
The findings from this study provide new support for the reliability and validity of the Resistiveness to Care Scale for use with older adults with dementia in nursing home settings. Future work with the measure may benefit, however, from the addition of items that are easier to endorse or express with regard to resistiveness to care. Such things as shutting eyes or spitting out food may be useful additions. Moreover, consideration should be given to removing the item in which residents say “no” to care as being reflective of resistiveness to care as this may be due to language issues rather than true resistiveness to care.
This study was supported by the National Institute on Aging grant R01 AG046217-01.
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The authors have no conflicts of interest.
Elizabeth Galik, Associate Professor, University of Maryland School of Nursing, 655 West Lombard Street, Baltimore, MD 21201.
Barbara Resnick, Professor, 655 West Lombard Street, Baltimore, MD 21201.
Erin Vigne, 655 West Lombard Street, Baltimore, MD 21201.
Sarah Dee Holmes, University of Maryland, Baltimore.
Victoria Nalls, University of Maryland School of Nursing.