Current Topics in Research
Reactions and Interventions for Delusions in Nursing Home Residents with Dementia
American Journal of Alzheimer’s Disease & Other Dementias® 2014, Vol. 29(4) 386-394 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1533317514522850 aja.sagepub.com
Jiska Cohen-Mansfield, PhD1,2,3, Hava Golander, PhD2,4, Giora Arnheim, BA5, and Rinat Cohen, MA2
Abstract This is a qualitative and quantitative study examining institutional staff members’ reactions to delusions experienced by nursing home residents. Participants were 38 nursing home residents aged 65 and older, diagnosed with dementia. Data were collected from 8 nursing homes in Israel between June 2007 and January 2009. Assessments included Behavioral Pathology in Alzheimer’s Disease Rating Scale, Neuropsychiatric Inventory: Nursing Home version, Etiological Assessment of Psychotic Symptoms In Dementia, Activities of Daily Living, and Mini-Mental State Examination. A wide variety of interventions with dementia-related symptoms was found to be effective to varying degrees. This included general approaches for a variety of symptoms as well as symptom-specific interventions. Caregivers do not always seem to be aware that multiple approaches are available to them when dealing with dementia. The most effective approaches may be those tailored to the individual. Combining interventions may increase overall effectiveness. Caregiver’s experience and the institutional culture may affect the choice of intervention used, either positively or negatively. Keywords Alzheimer’s disease, delusions, dementia, psychosis, Israel, interventions
Psychotic symptoms in dementia are quite common, with an average prevalence in excess of 60%,1 and with prevalence rates of delusions among persons with Alzheimer’s disease ranging from approximately 10% to 73%.2-5 Delusions tend to cause a great deal of distress for both the person with dementia and their caregivers.1,6 The Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition) defines delusions as fixed beliefs that do not change when presented with evidence to the contrary and also notes that delusions often fit into different themes.7 Inconsistencies in interpretation and uses of definitions of delusions across studies have led to inconclusive results in the understanding of the experience of delusions in persons with dementia. An important but often ignored aspect in the older persons’ lives is the reaction of the nursing home staff to symptoms of delusions, which can affect the quality of daily life of the person with dementia. Staff reactions to patients’ delusions involve questions such as do caretakers ignore the delusion? Do they address it? Do they go along and express agreement with the person experiencing it? Do they involve family members in dealing with the delusion? Literature on the relationship between the person who experiences delusions and his or her caregivers is limited. This relationship is of vital importance, since both sides are substantially affected by one another; appropriate reactions by the caregiver can tremendously help the person with dementia whereas knowledge about what the older person is going through, his or her self-identity,8,9 and retained awareness of his
or her situation10 can greatly assist the caregiver both in providing care and in alleviating the difficulties of caretaking. Caregivers often feel undersupported and underinformed by medical providers11,12 and are significantly negatively impacted by prolonged caregiving.13,14 Distressed caregivers may use inappropriate coping strategies such as emotion oriented rather than problem-focused coping strategies which, in turn, might contribute to the development of delusions.6 Intolerance on the part of the caregiver toward the older person’s disabilities might make older persons, who experience difficulties in facing and managing their cognitive deficits, inclined to attribute their failures to other causes, manifesting this in the form of delusions.6 A study on the effect of delusions of theft on caregivers found that caregiver burden was increased by these delusions, possibly since
1 Department of Health Promotion, School of Public Health, Sackler Faculty of Medicine, Tel-Aviv University 2 The Herczeg Institute on Aging, Tel-Aviv University, Tel Aviv, Israel 3 Minerva Center for Interdisciplinary Study of End of Life, Tel-Aviv University, Tel Aviv, Israel 4 Department of Nursing, Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel 5 Sanatorium ‘‘Gan Shalva’’ Ltd. Hod-Hasharon, Israel
Corresponding Author: Jiska Cohen-Mansfield, PhD, Tel-Aviv University, POB. 39040, Ramat Aviv, Tel-Aviv, 6139001, Israel. Email: [email protected]
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Resident attributes
387
Delusion
Resident's background
Dementia: Decreased cognitive abilities to process stimuli
Delusion
Reactions
Staff and institutional background
Staff reaction and intervention
Staff background and training
Resident affect and behavior
Nursing home culture
Sensory limitations
Environmental triggers
Figure 1. The Iterative Model of Environment and Delusion in Dementia (IMEDD).
caregivers are often players in or targets of the delusion and are therefore directly criticized by the older person through the delusion.15 The standard care of delusions in the nursing home usually involves the use of antipsychotic medications. These medications, however, pose potential health risks and their adverse effects may offset any advantages of their efficacy.16 Several clinical guidelines17-22 recommend nonpharmacological interventions as the first line of treatment for behavioral and psychiatric symptoms associated with dementia. Such nonpharmacological treatments include adjusting the physical environment of the older person, redirecting distressed older persons, improving communication with older persons, and promoting social interactions. These social interactions can consist of simulated socialization (eg, pet therapy and viewing family videotapes), structured activities (including selfaffirming exercises such as reminiscence therapy), or behavioral interventions. These interventions should be combined with caregiver education and support.22-27 Studies on the effectiveness of trainings for staff caregivers have shown marked improvement in patients’ symptoms and lessened need for restraints by changing the way staff members conceptualize and intervene with problem behaviors28-30 as well as increased quality of medical care.31 The Iterative Model of Environment and Delusions in Dementia (IMEDD) developed for this study is presented in Figure 1. According to the IMEDD, delusions result from the interaction of background variables, the decline in cognitive abilities to interpret reality, sensory deficits that may distort reality, and triggers in the environment of the person with dementia.32 The IMEDD outlines the interconnections between resident attributes, delusion occurrence, subsequent reactions, and staff and institutional characteristics and underscores the importance of understanding caregivers’ reactions to the delusion. For current purposes, the term ‘‘intervention’’ is used to
describe an elaborate reaction. This article aims to describe and categorize caregivers’ reactions and applied interventions for nursing home residents with dementia.
Method Participants Participants were 38 residents of 8 nursing homes in Israel aged 65 and over; who had a diagnosis of dementia; resided in the facility for at least 2 months; did not have a known acute or unstable medical condition; had at least minimal levels of verbal communication; and for whom consent was obtained from a responsible family member. The current sample was derived from an original sample of 74 nursing home residents, which is described elsewhere32 and includes only participants who were reported to have delusions. The sample was selected based on the availability of data on the experience of delusions and caregivers’ reactions. The assessments were administered to paid nursing home caregivers (henceforth informants) as detailed subsequently.
Procedure The Ethical Committees of Tel Aviv University and of Shoham Medical Center approved this study. Data were obtained from 8 nursing homes. Data collection took place between June 2007 and January 2009. In all, 16 nursing homes were initially approached to participate in the study of which 7 refused and 1 reported no psychotic symptoms displayed by their residents. Three types of institutions were included in the study: geriatric hospitals, nursing homes, and a sanatorium. Informed consent was obtained from the participant’s closest responsible family member.
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American Journal of Alzheimer’s Disease & Other Dementias® 29(4)
388 The assessments of delusions were translated into Hebrew by 2 independent translators and a third translator examined discrepancies and revised the assessments into a final version after consulting the researchers. The assessments were then administered to nursing home staff members such as registered nurses, practical nurses, nurse aids, occupational workers, and nursing home administrators who had extensive knowledge of and daily contact with the participant. One staff member reported on each participant. At some institutions, there were multiple staff members reporting. Of the informants’ reports, 97% were rated as highly reliable on the Neuropsychiatric Inventory: Nursing Home version (NPI-NH) by the research assistants. The other 3% sometimes had difficulty in understanding the questions. The assessments included many close-ended questions, which were entered directly into a computer via data entry software, and some open-ended items, which were transcribed in real time. The NPI-NH and the Behavioral Pathology in Alzheimer’s Disease Rating Scale (BEHAVE-AD) were administered to all informants (with 1 exception, for whom only the NPI-NH was administered) in random order. The Etiological Assessment of Psychotic Symptoms In Dementia (EAPSID) was administered to those who reported delusions either on the BEHAVE-AD or on the NPI-NH. The data used were quantitative and qualitative and mostly descriptive. The qualitative analysis involved in-depth analysis using principles of directed content analysis.33 Quantitative data were used to enhance the qualitative data in analyzing caregivers’ responses to delusions.
Assessments Delusions. The NPI-NH34: each type of delusion (being in danger, stolen from, spouse having an affair, thinking people are not who they say they are, believing fictional characters are present, and other unusual occurrences) or hallucination (hearing voices, talking to people not present, seeing things that are not present, smelling things that are not present, feeling things touching him or her that are not present, tasting things that are not present, and other unusual sensory occurrences) is marked as either occurring or not occurring. Informants were rated on level of motivation (low, moderate, and high) and accuracy of information provided (no reason to doubt accuracy, informant appeared to minimize deficits, informant appeared to exaggerate deficits, and other). The BEHAVE-AD35: each type of delusion (‘‘people are stealing things,’’ ‘‘one’s house is not one’s home,’’ ‘‘spouse is an imposter,’’ abandonment, infidelity, other suspiciousness or paranoia, or other delusions) or hallucination (visual, auditory, olfactory, haptic, and other) is rated on a 4point scale, from 0 (symptom not present) to 3 (severe presentation of the symptom including violent action). The EAPSID32 is an assessment tool developed for this study which evaluates psychosis in dementia from an etiological perspective, based on the nomenclature described by Cohen-Mansfield.25 One question inquires specifically about the reactions of staff members to the delusion (‘‘How do the staff members react when the
person is experiencing the delusion?’’). Other questions pertained to the description of the delusion and the social and physical environment in which it occurred. The open-ended responses on the EAPSID provided the qualitative data for the study. Function. Activities of Daily Living (ADL)36 were assessed by asking respondents to rate the older persons’ difficulties in performing 7 different vital activities (eating, dressing and undressing, taking care of one’s appearance, walking, getting in and out of bed, taking a bath or shower and getting to the bathroom on time) on a scale from ‘‘without help’’ (2) to ‘‘totally dependent’’ (0). The sum score ranged from 0 to 14. Cronbach’s a coefficient was .88. Cognitive function. The Mini-Mental State Examination (MMSE)37 was administered to participants unless scores were available in the participant’s chart from a recent administration.
Results Approximately three-quarters (76.3%) of the participants were female and participants had an average age of 84.84 years (standard deviation [SD] ¼ 5.96, range: 67-96 years). Most (68.4%) were widowed and some (15.8%) were married. The ADL performance averaged 7.71 (SD ¼ 3.29, range 1-13). Cognitive function averaged 9.49 (SD ¼ 5.95, range: 0-24). Participants had an average of 8.87 medical diagnoses (SD ¼ 3.69, range: 0-16). Education levels varied: 15.4% of the participants had no formal schooling, 23.1% had completed 11th grade or less, 42.3% had completed high school, and 19.2% had earned a Bachelor’s degree or a higher degree. No significant differences were found between the participating institutions in relation to the participants’ ADL score or MMSE. The following section discusses the categories of the manner in which staff reported they treat delusions in nursing home residents as measured by the EASPID and as rated and verified by several members of the research team. This included general approaches for a variety of symptoms as well as symptomspecific interventions.
Calm Down The most common reaction by staff members was to calm the person down, reported for about three-quarters of the participants (Table 1). The nature of the calming down process was often not specified. In some cases, staff members mentioned talking about other issues as one method of calming down the person, suggesting that either distraction or engagement in other meaningful topics was the manner of calming down. In other cases, calming down involved the manner of talk, such as talking in a soothing way and nonverbal expressions of caring. Trying to calm the person down was applied in all cases in which participants complained of abandonment or that the nursing home was not their home and in most of the cases (86%) in which the participants described a delusion of danger. It was
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Table 1. Percentage of Staff Interventions Reported Used for Delusions for Total Population, by Type of Delusion. Total Per Total Per Person Abandonment Delusion (n ¼ 50) (n ¼ 38) (n ¼ 4) Calm down, % Agree, % Argue, % Other/symptom specific, % Explain, % Searching, % Ignoring, % Involve the family, % Average number of reactions
Danger (n ¼ 7)
Not at Home Misidentification Theft (n ¼ 5) (n ¼ 5) (n ¼ 16)
Other (n ¼ 13)
68 42 36 30
71 42 37 26
100 75 25 25
86 57 29 43
100 40 40 20
40 60 40 20
56 13 50 19
62 54 23 46
18 10 8 6
18 13 8 5
0 N/A 0 0
57 N/A 0 29
40 N/A 0 0
0 N/A 0 0
19 31 6 6
0 N/A 23 0
2.25
3.00
2.40
1.60
2.00
2.08
2.18
Abbreviation: N/A, not applicable.
applied in about half the cases of complaints concerning theft. This category is a generalized approach. For example, Mrs A is an 82-year-old married woman with an MMSE score of 7. She had vision and hearing problems and feels abandoned by her husband because he did not move to the institution with her. She sometimes suspects him of infidelity and is reported to show major improvement when staff members manifest nonverbal expressions of caring, such as hugs and attention.
Agree The second most common response (42%) was agreeing with the residents concerning their perception of reality, without acknowledging that it is not rooted in actual fact, in order to help the person calm down. This occurred for the majority (75%) of the persons who felt abandoned by their family and for over half (57%) of those who felt in danger. The combination of trying to calm the person down and agreeing with the person was common, occurring in about a third (36%) of the participants. For example, Mrs B, a 75-year-old widow with an MMSE of 10, believes she spent the day at her or her son’s home. She does not understand who the staff members are or why they bother her. Staff members agree with the delusion and try to explain their purpose in a calming manner. Agreeing with the delusion was also reported as helpful in the case of Ms C, a 91-year-old widow with an MMSE score of 8, who had worked as a social worker. Her delusion involves having written and submitted an unpleasant report and she is worried of the reaction of others. When those who surround her accept the delusion, yet provide encouragement, she is relieved. Agreeing with a delusion may not require any additional intervention when a delusion has no negative consequences. For example, Mr D, an 81-year-old man with an MMSE score of 17, experiences a misidentification delusion in which he thinks one of the caregivers is his daughter and at times mistook his son for his older brother. The informant concluded
that no intervention was needed as the delusion neither had negative consequences nor was it accompanied by any emotional discomfort.
Argue The converse reaction is arguing with the older person about reality by telling the person that he or she is wrong, which occurred in 37% of the cases. This was the reaction in half the cases of delusion of theft and for 40% of the instances when a person manifested delusions of misidentification and when thinking the house was not their home. For example, Ms E is an 83-year-old Holocaust survivor with an MMSE score of 11 who is worried about where she will sleep and who will take care of her. She is expecting to leave though it is not clear to where. At times, she thinks her son was arrested. In response, staff members tell her she is wrong and explain that she is staying at the nursing home, her son is at work, and everything is fine. Another example is that of Ms F, an 86-year-old widow with an MMSE score of 6, who is also a Holocaust survivor. Her delusion involves making up stories about the nursing home, the staff, and the residents. For instance, she had heard on the news that a lot of older persons died during the previous winter and said that her specific nursing home has the highest death rate, or that all the darkskinned nurses are of Moroccan origin. In response, staff members tell her she is wrong and then ignore her.
Explain Staff members explained the situation in 18% of delusions by describing the reasons or mitigating circumstances for the situation. This was a reaction for 57% of the cases of delusion of danger. In contrast, this reaction was not used with any of the participants with delusions of abandonment, misidentification, and other delusions. For example, Mr G is a 88-year-old man with an MMSE score of 18 and with hearing and vision impairments. The reported delusion was his request to go back to his ‘‘home’’ where his wife is. He does not understand why his
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390 wife is at home while he is at the institution. He says that he spoke with his wife and that she agreed they could live together and is willing to come to live in the nursing home. He asks whether they could live together in his room. The staff members explain that his wife is far away from him and will be coming in a day or two. They also explained that he stays at the institution for medical treatment.
Involve the Family Staff members involved family members to try to calm the older person in 5% of the cases. An example of involving the family pertains to Mr H, an 80-year-old person with an MMSE score of 14. When, he asks to go to his parents’, calling on his children for help is an effective intervention. Similarly Mr G, who wants to go home to his wife, is sometimes taken by his son for a ride in the car through the fields. On one occasion, it had a noticeable effect decreasing his request to go home.
Ignoring Staff members reported ignoring as the only reaction for 3 (8%) participants, with 2 of them involving a delusion of theft. A nontheft example is that of Mr I, a 92-year-old blind widower with an MMSE score of 1. His delusion involves asking for the time and then saying he must hurry because the train leaves in 15 minutes. He claims he is late for the train and has to take his suitcase and leave: ‘‘We have to go, we have to leave now.’’ The destination is always the same city. Sometimes he wishes to go to funerals of people who died a long time ago. Staff members’ responses on the EAPSID indicate that they think there is no need to intervene with this delusion.
Tailored Symptom-Specific Interventions Searching for missing items. Staff members searched for the missing items and showed them to residents in 10% of cases, all involving a delusion of theft, that is, in about a quarter of the reports of delusions of theft.
Once the manager provided a signature, the letter was instrumental in calming down Mr H. A similar intervention, utilizing a power figure to strengthen a calming message, was applied with Ms J, an 82-year-old divorcee with an MMSE score of 24. Her delusion involved the belief that specific residents wish to harm her. Staff members tried to tell her she was wrong and tried to calm her down, without much success. Her daughter ignored the complaints and her grandchildren explained that she was mistaken, none of which made a difference. What did alleviate her fears to a large degree was a conversation with the director of the facility who spoke with her in an authoritative manner and promised to protect her from the residents of whom she was scared. A comparable intervention was successful for Mr D who thought his (deceased) mother was sick and needed to see a doctor and who also described danger to property. Staff members tried to calm him down by telling him that his brother or the police would take care of the problem. Pet therapy. For Ms K, a 73-year-old widow with an MMSE score of 4, whose delusions involved thinking that her parents are waiting for her and that staff members have to do something undefined, contact with dogs was reported to result in major improvement. Similarly, for Ms L, an 87-year-old woman with an MMSE score of 3 and hearing impairment, who thinks she is at her parents’ home and taking care of her mother or that she is taking care of children, interventions of contact with dogs and with a small child resulted in significant improvement. Compliance with request based on delusion. For example, Mr G sometimes thinks soldiers are waiting for him outside in the middle of the night and he needs to provide food and drinks for the soldiers, otherwise they will ‘‘go wild.’’ He threatens that if he will not be helped, he will use his cane as a weapon. Sometimes the staff members bring him food and tell him they will give it to the soldiers. Change of location. Mr M, a 95-year-old widower with an MMSE score of 4, accuses his roommate of stealing his clothing. In addition to telling Mr M that he is wrong and talking with him about other topics, staff members try to seat the accused resident away from Mr M.
Outdoor outing. A walk outside the institution with staff members was sometimes helpful when Mr H, an 80-year-old man with an MMSE score of 14, insisted that the nursing home was not his home. As mentioned earlier, a ride outside the institution with his son was once helpful for the same delusion for Mr G.
Reported failed interventions. Sometimes the informant reported which interventions failed. For example, for Mr H, interventions that were reported to be unsuccessful included reality orientation and physical restraint.
Utilization of authority figures. For example, Mr H had delusions that the army was looking for him because he had committed some misdeed whose nature was not clear. When trying to calm him down, it became clear that he needed more than assurances. The manager of the nursing home therefore composed a letter from the army and printed it on paper with a formal letterhead downloaded from the internet. Mr H was interested in the letter but pointed out to the lack of signature.
Reactions of other residents. We did not systematically ask about other residents’ reactions to the delusions; yet, some interviewees volunteered the information. In most cases in which reports were provided, they described other residents ignoring the behavior associated with the delusion. There were several examples of residents reprimanding the person for the delusion and sporadic examples of residents agreeing or arguing with the person concerning the delusion.
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Table 2. Frequencies and Statistically Significant Differences Between Institutions in Interventions.a
Number of delusions Explain Agree Involve family Argue Other/symptom specific Try to calm down/talk about other issues Ignore a
Sanatorium, %
Geriatric Hospitals, %
Nursing Homes, %
Chi-square
P Value
17 35.3 76.5 17.6 17.6 76.5 82.4 0
18 5.6 22.2 0 55.6 11.1 55.6 11.1
15 6.7 26.7 0 40 0 80 6.7
7.14 12.63 6.19 5.36 26.96 3.79 1.93
.028 .002 .045 .068 .000 .15 .381
The following types of responses did not differ by type of nursing home: try to calm down/talk about other issues, ignore.
Reactions of family members. Similar to reports concerning other residents, we did not solicit systematic information concerning the reactions of family members but those were sometimes volunteered. For example, in response to Ms J, described above as fearing danger from other residents, her daughter ignores the references to danger while her grandchildren explain to her that she is wrong. Multiple reactions. On average, staff members reported 2 reactions per delusion, ranging from an average of 1.6 in response to misidentification to 3 for a delusion of danger (Table 1). Reporting ‘‘calm down’’ as a reaction was likely to be accompanied with additional reactions, including ‘‘agree’’ (in 50% of the reports of ‘‘calm down’’), symptom-specific responses (35%), argue (29%), explain (18%), search for missing object (6%), and involve family (3%). In contrast to calm down, a reaction of ‘‘ignoring’’ was unlikely to be accompanied with additional reactions. Differences in rates of intervention across nursing homes. Different nursing homes showed varying rates of interventions. Statistically significant differences were found with regard to the use of the following interventions: other/symptom specific, agreeing, explaining, and involving the family (Table 2). Caregivers in 1 institution—a sanatorium—provided more individualized interventions and were more likely to agree, explain, and involve family members when compared to the other institutions.
Discussion This article describes reactions to delusions for 38 nursing home residents for whom at least 1 delusion was described via the NPI-NH or the BEHAVE-AD, and the way it was treated was described on the EAPSID. To our knowledge, this is the first article to systematically describe the reactions and interventions provided by nursing home staff members to symptoms they characterize as delusions. The report is important on several counts. First, it exemplifies the multiple reactions and interventions available to caregivers. Caregivers may at times become bewildered by these behaviors and may not be aware of the availability of multiple intervention approaches. Indeed, in previous research, spousal caregivers of persons with Parkinson’s disease have employed a trial-and-error approach to
dealing with psychotic symptoms.13 In that study, caregivers reported some similar intervention approaches to those currently found (i.e., calming/reducing agitation, agreeing with the delusion, ignoring/disengaging, and avoiding triggers) as well as others (eg, social comparison).13 An understanding of a range of options also opens the possibility for future comparison of their relative efficacy as well as effects on both care recipient and caregiver. Further, examining interventions in connection to themes of delusions could also help to clarify which type of intervention may be most successful with which type of delusion. The description and classification of such nonpharmacological interventions present an initial nomenclature of such caregiving reactions, thus setting the foundation for future research on this topic. Although trying to calm the person was the most commonly reported reaction, this category is insufficient in its specificity. Indeed, the vast majority of reactions, including agreeing with the resident and symptom specific interventions, aim to calm the person and indeed calming a distressed person should be the ultimate goal of any intervention. Many of the interventions, such as an outdoor outing, a change of location, or interaction with pets, may calm the person with dementia while also providing an opportunity for positive engagement. Future research is needed to better operationalize the methods used in the response which caregivers described as trying to calm the person. The second most common reaction was to agree with the person, accepting his or her experience of reality and trying to calm the person from the point of view of that reality. However, from the point of the caregiver, the ‘‘delusional’’ reality is not the true reality. This issue was highlighted in several articles discussing lying and truth in caretaking of persons with dementia.38-45 According to a survey of formal caregivers,41 most participants used lies in their work with people with dementia. Our study is different in that, rather than having the caregiver as the unit of analysis, we have the care recipient as the unit of analysis. In this analysis, most of the cases of agreeing with the participant’s delusion, as well as several of the tailored interventions (eg, preparing the ‘‘forged’’ letter from the army), can be construed as lies. Types of lies have been classified as ‘‘going along with a misperception,’’ ‘‘withholding the truth,’’ ‘‘little white lies,’’ and ‘‘use of tricks.’’45 In our examples, the reactions fall into
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392 the ‘‘going along with a misperception’’ category. Despite labeling these actions as lies, Elvish et al40 developed a workshop that resulted in improved attitudes toward those lies when used to benefit the recipients. In an ethical analysis of such lies, all forms of lies and deceit were condemned on moral grounds. However, it was also claimed that due to the altered perception of reality because of the dementia, the person with dementia has a diminished capacity to differentiate between truth and falsehood.38 Accordingly, lying can be justified when it is necessary for the well-being of the person with dementia but if such well-being can be achieved without lying that is preferable. Clinical experience suggests that for many persons with dementia other methods may not be available. However, beyond this argument, there is a deeper reason to accept the resident’s delusion and that act may not need to be construed as a lie. As effective caregivers, it is imperative that staff members feel empathy with residents and try to understand reality from their point of view even when not completely shared by the caregiver. Indeed, some of the delusions are on the borderline between truth and falsehood. For example, when a resident feels abandoned by a spouse who stayed home while placing the resident in the nursing home, a sense of abandonment can be understood, even when simultaneously understanding that the spouse could not take care of the resident at home. Similarly, the sensation of something being stolen when it cannot be found can be experientially understood. Delusions could be indicative of an unmet need that the person with dementia is unable to communicate. For example, when Mr H asks to go to his parent’s or says that the nursing home is not his home, he perhaps wants to be in a place that is comfortable and familiar to him but is not able to communicate it in a clear way. Therefore, going along with the delusion or lying in the context to support the person with dementia can have a positive impact and help the person satisfy the unmet need. This empathy with a resident’s feelings is often necessary for good care, and accepting the resident’s point of view can be a condition for trust and rapport that allows the caregiver to navigate the experience to more positive realms. From this standpoint, the caregiver’s activity is a validating positive regard necessary for treatment rather than a lie. Of the different reactions and interventions used by staff, the most impressive are those that were tailored to the person and to the specific delusion. When interventions are personalized, they respond to the individualized needs, interests, and past experiences of the person with dementia and may therefore be more successful. Depending on the type of delusion, certain interventions will be more appropriate than others. For example, showing the supposedly stolen object is obviously only appropriate for a delusion of theft. Some interventions required a level of inventiveness and extra effort on the part of caregivers, calling on their skills and experience level, and were clearly designed to respond to the specific need (eg, fear) or request (eg, food for soldiers) manifested by the resident. Such attention to need and a willingness to invest in resourceful solutions was especially common in 1 nursing home; this level of care occurred in 76.5% of participants from that particular
nursing home as compared to 7% from all other nursing homes, suggesting that it may reflect an institutionalized level of practice style46 or quality of care. The culture of a nursing home or institution can affect the way delusions are approached and understood. This could be due to the differing infrastructures of the institutions that encourage, train, or support caregivers to provide more person-centered responses, or may not support those due to time constraints, budget, and so on. One type of individualized response that involves ‘‘explaining’’ and a reconstruction of reality to reverse the explanation is sometimes useful. If we take the example of Mr G, who requests to go home to his wife, telling him that his wife is the one who needs help (eg, that she is not feeling so well and needs to be elsewhere) rather than he is sometimes helpful. Such reverse explanation can also help clarify why the outdoor gate is locked, not to prevent the person with dementia from going out but to prevent strangers from coming in. The findings raise several hypotheses and questions. The type of reaction that caregivers manifest may depend on who is accused. For example, when the delusion is that of stealing, where they may be considered responsible for the property, they argue; but in cases of delusion of abandonment, where a family member is typically the accused, they do not need to defend themselves and therefore they agree with the delusion. In cases of a delusion of theft, there was a report of a search for the missing object in about a third of the cases. This raises the question what happens in the rest of the cases? Do they know where the item is and present it? Has the item been destroyed, thrown away or taken elsewhere? The differentiation between arguing and explaining is also unclear. In both cases, the caregiver is trying to convey a reality different from that presented in the delusion. Does the use of the different term reflect a different tone or does it depend on the responder’s linguistic preference? Future research needs to explore these issues. Another issue to be examined is the use of multiple interventions. For example, Mr M had a delusion of theft by another resident. The staff members reacted to the delusion by separating Mr M’s seat from the resident who is usually accused of stealing. They also tell him that he is wrong, talk with him about other issues, try to calm him down, and admonish him. Do certain reactions tend to co-occur? Under what circumstances? Are multiple reactions an indication of a more comprehensive approach to the problem, or a sign of the weak efficacy of each component? The relationship between the manifestations of the delusion and the staff reactions to it should also be examined, that is, what circumstances prompt staff members to elucidate the etiology of the delusion and to develop preventive or intervention approaches? Golander and Raz47 observed that the more the manifestation of the behavior interferes with the staff members’ work routines, the more likely they will be to try to clarify the reasons for the behavior and to devise a plan for handling it. This could be tested in future studies. The interview used in the study focused on staff caregivers, but comments about family caregivers’ reactions were sometimes mentioned. Those reactions may reflect an emotional
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response to the delusion whose nature depends on the strength, quality, and complexity of the relationship with the person with dementia. Families who understand and empathize with the person with dementia are more likely to be actively helpful in handling the behavior, whereas those who are ashamed of the person’s symptoms or find them offensive are more likely to have more difficulty in finding constructive solutions. These issues need to be examined in future research. In a similar vein, there seems to be a relationship between the staff members’ understanding of the disease, their empathy toward the person with dementia, and their patience and willingness to invest in more individualized solutions. Such solutions require knowledge of the person with dementia, his or her past, occupation, family life, and sense of identity. Furthermore, it stands to reason that staff members who are more satisfied with their work would be more willing to invest in finding the optimal solution and to learn from failures. Similarly, professional training may both directly enhance staff members’ understanding of the older person and behavior and may also indirectly affect empathy by increasing job satisfaction, as indicated by care staff responses on a United Kingdom survey.48 Indeed, top-performing care homes were found to consistently dedicate time and resources to dementia awareness and person-centered care training.49 In the current study, the differential nursing home culture and quality of care provided may be reflected in the higher rates of other/ symptom-specific interventions applied in a particular nursing home (the sanatorium); however, no data on caregivers’ training and quality of work were available. The intricate relationships among staff quality of work, knowledge and training, satisfaction, and level of practice may explain the differences in practice style and efficacy among the nursing homes and deserve further investigation. Current results are limited by a relatively small sample size and reliance on self-report of caregivers. Presumably, if any completely inappropriate responses were manifested toward the delusions, those would not be reported. These limitations notwithstanding, this article laid the groundwork for a nomenclature for future research which can increase its precision (eg, the type of activity used to calm down participants), increase the sample size, evaluate the impact of the different responses, and examine other residents’ and family members’ responses as well. Additional research regarding these topics is essential, especially given that hardly any information exists currently. Such knowledge could help improve the care and treatment of psychotic symptoms manifested by persons with dementia and could empower staff members to find better fitting solutions to care difficulties. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was funded in part by Marie Curie International grant #044946 of the
European Commission, by the Israel Science Foundation grant 1067/ 07, and by the Minerva Foundation.
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32. Cohen Mansfield J, Golander H, Ben Israel J, Garfinkel D. The meanings of delusions in dementia: a preliminary study. Psychiatry Res. 2011;189(1):97-104. 33. Hsieh H-F, Shannon S. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277-1288. 34. Cummings JL, Mega M, Gray K, Rosenberg-Thompson S, Carusi DA, Gornbein J. The neuropsychiatric inventory: comprehensive assessment of psychopathology in dementia. Neurology. 1994; 44(12):2308-2314. 35. Reisberg B, Auer SR, Monteiro IM. Behavioral pathology in Alzheimer’s disease (BEHAVE-AD) rating scale. Int Psychogeriatr. 1997;8(2):301-308. 36. Center for the Study of Aging and Human Development, Multidimensional Functional Assessment: The OARS Methodology, 1st ed. Duke University, Durham, NC. 1975. 37. Folstein MF, Folstein SE, Mchugh PR. Mini-mental state - practical method for grading cognitive state of patients for clinician. J Psychiatric Res. 1975;12(3):189-198. 38. Schermer M. Nothing but the truth? On truth and deception in dementia care. Bioethics. 2007;21(1):13-22. 39. Day AM, James IA, Meyer TD, Lee DR. Do people with dementia find lies and deception in dementia care acceptable? Aging Ment Health. 2011;15(7):822-829. 40. Elvish R, James I, Milne D. Lying in dementia care: an example of a culture that deceives in people’s best interests. Aging Ment Health. 2010;14(3):255-262. 41. James IA, Wood-Mitchell AJ, Waterworth AM, Mackenzie LE, Cunningham J. Lying to people with dementia: developing ethical guidelines for care settings. Int J Geriatr Psychiatry. 2006;21(8): 800-801. 42. Rabins P, Lyketsos C, Steele C. Practical Dementia Care. New York: Oxford University Press; 2006. 43. Hasselkus BR. Everyday ethics in dementia day care: narratives of crossing the line. Gerontologist. 1997;37(5):640-649. 44. Cutcliffe J, Milton J. In defence of telling lies to cognitively impaired elderly patients. Int J Geriatr Psychiatry. 1996;11(2): 1117-1118. 45. Blum N. Deceptive practices in managing a family member with Alzheimer’s disease. Symbolic Interact. 1994;17(1):21-36. 46. Cohen-Mansfield J, Parpura-Gill A. Practice style in the nursing home: dimensions for assessment and quality improvement. Int J Geriatr Psychiatry. 2008;23(4):376-386. 47. Golander H, Raz AE. The mask of dementia: images of ‘demented residents’ in a nursing ward. Ageing Soc. 1996;16(3):269-286. 48. Sharp S. An overview of the ‘home from home’ report. J Qual Res Dement. 5: 2008. 49. Commission for Social Care Inspection. See Me, Not Just The Dementia: Understanding People’s Experiences Of Living In A Care Home. London: Commission for Social Care Inspection; 2008.
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Reactions and Interventions for Delusions in Nursing Home Residents with Dementia
American Journal of Alzheimer’s Disease & Other Dementias® 2014, Vol. 29(4) 386-394 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1533317514522850 aja.sagepub.com
Jiska Cohen-Mansfield, PhD1,2,3, Hava Golander, PhD2,4, Giora Arnheim, BA5, and Rinat Cohen, MA2
Abstract This is a qualitative and quantitative study examining institutional staff members’ reactions to delusions experienced by nursing home residents. Participants were 38 nursing home residents aged 65 and older, diagnosed with dementia. Data were collected from 8 nursing homes in Israel between June 2007 and January 2009. Assessments included Behavioral Pathology in Alzheimer’s Disease Rating Scale, Neuropsychiatric Inventory: Nursing Home version, Etiological Assessment of Psychotic Symptoms In Dementia, Activities of Daily Living, and Mini-Mental State Examination. A wide variety of interventions with dementia-related symptoms was found to be effective to varying degrees. This included general approaches for a variety of symptoms as well as symptom-specific interventions. Caregivers do not always seem to be aware that multiple approaches are available to them when dealing with dementia. The most effective approaches may be those tailored to the individual. Combining interventions may increase overall effectiveness. Caregiver’s experience and the institutional culture may affect the choice of intervention used, either positively or negatively. Keywords Alzheimer’s disease, delusions, dementia, psychosis, Israel, interventions
Psychotic symptoms in dementia are quite common, with an average prevalence in excess of 60%,1 and with prevalence rates of delusions among persons with Alzheimer’s disease ranging from approximately 10% to 73%.2-5 Delusions tend to cause a great deal of distress for both the person with dementia and their caregivers.1,6 The Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition) defines delusions as fixed beliefs that do not change when presented with evidence to the contrary and also notes that delusions often fit into different themes.7 Inconsistencies in interpretation and uses of definitions of delusions across studies have led to inconclusive results in the understanding of the experience of delusions in persons with dementia. An important but often ignored aspect in the older persons’ lives is the reaction of the nursing home staff to symptoms of delusions, which can affect the quality of daily life of the person with dementia. Staff reactions to patients’ delusions involve questions such as do caretakers ignore the delusion? Do they address it? Do they go along and express agreement with the person experiencing it? Do they involve family members in dealing with the delusion? Literature on the relationship between the person who experiences delusions and his or her caregivers is limited. This relationship is of vital importance, since both sides are substantially affected by one another; appropriate reactions by the caregiver can tremendously help the person with dementia whereas knowledge about what the older person is going through, his or her self-identity,8,9 and retained awareness of his
or her situation10 can greatly assist the caregiver both in providing care and in alleviating the difficulties of caretaking. Caregivers often feel undersupported and underinformed by medical providers11,12 and are significantly negatively impacted by prolonged caregiving.13,14 Distressed caregivers may use inappropriate coping strategies such as emotion oriented rather than problem-focused coping strategies which, in turn, might contribute to the development of delusions.6 Intolerance on the part of the caregiver toward the older person’s disabilities might make older persons, who experience difficulties in facing and managing their cognitive deficits, inclined to attribute their failures to other causes, manifesting this in the form of delusions.6 A study on the effect of delusions of theft on caregivers found that caregiver burden was increased by these delusions, possibly since
1 Department of Health Promotion, School of Public Health, Sackler Faculty of Medicine, Tel-Aviv University 2 The Herczeg Institute on Aging, Tel-Aviv University, Tel Aviv, Israel 3 Minerva Center for Interdisciplinary Study of End of Life, Tel-Aviv University, Tel Aviv, Israel 4 Department of Nursing, Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel 5 Sanatorium ‘‘Gan Shalva’’ Ltd. Hod-Hasharon, Israel
Corresponding Author: Jiska Cohen-Mansfield, PhD, Tel-Aviv University, POB. 39040, Ramat Aviv, Tel-Aviv, 6139001, Israel. Email: [email protected]
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Resident attributes
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Delusion
Resident's background
Dementia: Decreased cognitive abilities to process stimuli
Delusion
Reactions
Staff and institutional background
Staff reaction and intervention
Staff background and training
Resident affect and behavior
Nursing home culture
Sensory limitations
Environmental triggers
Figure 1. The Iterative Model of Environment and Delusion in Dementia (IMEDD).
caregivers are often players in or targets of the delusion and are therefore directly criticized by the older person through the delusion.15 The standard care of delusions in the nursing home usually involves the use of antipsychotic medications. These medications, however, pose potential health risks and their adverse effects may offset any advantages of their efficacy.16 Several clinical guidelines17-22 recommend nonpharmacological interventions as the first line of treatment for behavioral and psychiatric symptoms associated with dementia. Such nonpharmacological treatments include adjusting the physical environment of the older person, redirecting distressed older persons, improving communication with older persons, and promoting social interactions. These social interactions can consist of simulated socialization (eg, pet therapy and viewing family videotapes), structured activities (including selfaffirming exercises such as reminiscence therapy), or behavioral interventions. These interventions should be combined with caregiver education and support.22-27 Studies on the effectiveness of trainings for staff caregivers have shown marked improvement in patients’ symptoms and lessened need for restraints by changing the way staff members conceptualize and intervene with problem behaviors28-30 as well as increased quality of medical care.31 The Iterative Model of Environment and Delusions in Dementia (IMEDD) developed for this study is presented in Figure 1. According to the IMEDD, delusions result from the interaction of background variables, the decline in cognitive abilities to interpret reality, sensory deficits that may distort reality, and triggers in the environment of the person with dementia.32 The IMEDD outlines the interconnections between resident attributes, delusion occurrence, subsequent reactions, and staff and institutional characteristics and underscores the importance of understanding caregivers’ reactions to the delusion. For current purposes, the term ‘‘intervention’’ is used to
describe an elaborate reaction. This article aims to describe and categorize caregivers’ reactions and applied interventions for nursing home residents with dementia.
Method Participants Participants were 38 residents of 8 nursing homes in Israel aged 65 and over; who had a diagnosis of dementia; resided in the facility for at least 2 months; did not have a known acute or unstable medical condition; had at least minimal levels of verbal communication; and for whom consent was obtained from a responsible family member. The current sample was derived from an original sample of 74 nursing home residents, which is described elsewhere32 and includes only participants who were reported to have delusions. The sample was selected based on the availability of data on the experience of delusions and caregivers’ reactions. The assessments were administered to paid nursing home caregivers (henceforth informants) as detailed subsequently.
Procedure The Ethical Committees of Tel Aviv University and of Shoham Medical Center approved this study. Data were obtained from 8 nursing homes. Data collection took place between June 2007 and January 2009. In all, 16 nursing homes were initially approached to participate in the study of which 7 refused and 1 reported no psychotic symptoms displayed by their residents. Three types of institutions were included in the study: geriatric hospitals, nursing homes, and a sanatorium. Informed consent was obtained from the participant’s closest responsible family member.
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American Journal of Alzheimer’s Disease & Other Dementias® 29(4)
388 The assessments of delusions were translated into Hebrew by 2 independent translators and a third translator examined discrepancies and revised the assessments into a final version after consulting the researchers. The assessments were then administered to nursing home staff members such as registered nurses, practical nurses, nurse aids, occupational workers, and nursing home administrators who had extensive knowledge of and daily contact with the participant. One staff member reported on each participant. At some institutions, there were multiple staff members reporting. Of the informants’ reports, 97% were rated as highly reliable on the Neuropsychiatric Inventory: Nursing Home version (NPI-NH) by the research assistants. The other 3% sometimes had difficulty in understanding the questions. The assessments included many close-ended questions, which were entered directly into a computer via data entry software, and some open-ended items, which were transcribed in real time. The NPI-NH and the Behavioral Pathology in Alzheimer’s Disease Rating Scale (BEHAVE-AD) were administered to all informants (with 1 exception, for whom only the NPI-NH was administered) in random order. The Etiological Assessment of Psychotic Symptoms In Dementia (EAPSID) was administered to those who reported delusions either on the BEHAVE-AD or on the NPI-NH. The data used were quantitative and qualitative and mostly descriptive. The qualitative analysis involved in-depth analysis using principles of directed content analysis.33 Quantitative data were used to enhance the qualitative data in analyzing caregivers’ responses to delusions.
Assessments Delusions. The NPI-NH34: each type of delusion (being in danger, stolen from, spouse having an affair, thinking people are not who they say they are, believing fictional characters are present, and other unusual occurrences) or hallucination (hearing voices, talking to people not present, seeing things that are not present, smelling things that are not present, feeling things touching him or her that are not present, tasting things that are not present, and other unusual sensory occurrences) is marked as either occurring or not occurring. Informants were rated on level of motivation (low, moderate, and high) and accuracy of information provided (no reason to doubt accuracy, informant appeared to minimize deficits, informant appeared to exaggerate deficits, and other). The BEHAVE-AD35: each type of delusion (‘‘people are stealing things,’’ ‘‘one’s house is not one’s home,’’ ‘‘spouse is an imposter,’’ abandonment, infidelity, other suspiciousness or paranoia, or other delusions) or hallucination (visual, auditory, olfactory, haptic, and other) is rated on a 4point scale, from 0 (symptom not present) to 3 (severe presentation of the symptom including violent action). The EAPSID32 is an assessment tool developed for this study which evaluates psychosis in dementia from an etiological perspective, based on the nomenclature described by Cohen-Mansfield.25 One question inquires specifically about the reactions of staff members to the delusion (‘‘How do the staff members react when the
person is experiencing the delusion?’’). Other questions pertained to the description of the delusion and the social and physical environment in which it occurred. The open-ended responses on the EAPSID provided the qualitative data for the study. Function. Activities of Daily Living (ADL)36 were assessed by asking respondents to rate the older persons’ difficulties in performing 7 different vital activities (eating, dressing and undressing, taking care of one’s appearance, walking, getting in and out of bed, taking a bath or shower and getting to the bathroom on time) on a scale from ‘‘without help’’ (2) to ‘‘totally dependent’’ (0). The sum score ranged from 0 to 14. Cronbach’s a coefficient was .88. Cognitive function. The Mini-Mental State Examination (MMSE)37 was administered to participants unless scores were available in the participant’s chart from a recent administration.
Results Approximately three-quarters (76.3%) of the participants were female and participants had an average age of 84.84 years (standard deviation [SD] ¼ 5.96, range: 67-96 years). Most (68.4%) were widowed and some (15.8%) were married. The ADL performance averaged 7.71 (SD ¼ 3.29, range 1-13). Cognitive function averaged 9.49 (SD ¼ 5.95, range: 0-24). Participants had an average of 8.87 medical diagnoses (SD ¼ 3.69, range: 0-16). Education levels varied: 15.4% of the participants had no formal schooling, 23.1% had completed 11th grade or less, 42.3% had completed high school, and 19.2% had earned a Bachelor’s degree or a higher degree. No significant differences were found between the participating institutions in relation to the participants’ ADL score or MMSE. The following section discusses the categories of the manner in which staff reported they treat delusions in nursing home residents as measured by the EASPID and as rated and verified by several members of the research team. This included general approaches for a variety of symptoms as well as symptomspecific interventions.
Calm Down The most common reaction by staff members was to calm the person down, reported for about three-quarters of the participants (Table 1). The nature of the calming down process was often not specified. In some cases, staff members mentioned talking about other issues as one method of calming down the person, suggesting that either distraction or engagement in other meaningful topics was the manner of calming down. In other cases, calming down involved the manner of talk, such as talking in a soothing way and nonverbal expressions of caring. Trying to calm the person down was applied in all cases in which participants complained of abandonment or that the nursing home was not their home and in most of the cases (86%) in which the participants described a delusion of danger. It was
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Table 1. Percentage of Staff Interventions Reported Used for Delusions for Total Population, by Type of Delusion. Total Per Total Per Person Abandonment Delusion (n ¼ 50) (n ¼ 38) (n ¼ 4) Calm down, % Agree, % Argue, % Other/symptom specific, % Explain, % Searching, % Ignoring, % Involve the family, % Average number of reactions
Danger (n ¼ 7)
Not at Home Misidentification Theft (n ¼ 5) (n ¼ 5) (n ¼ 16)
Other (n ¼ 13)
68 42 36 30
71 42 37 26
100 75 25 25
86 57 29 43
100 40 40 20
40 60 40 20
56 13 50 19
62 54 23 46
18 10 8 6
18 13 8 5
0 N/A 0 0
57 N/A 0 29
40 N/A 0 0
0 N/A 0 0
19 31 6 6
0 N/A 23 0
2.25
3.00
2.40
1.60
2.00
2.08
2.18
Abbreviation: N/A, not applicable.
applied in about half the cases of complaints concerning theft. This category is a generalized approach. For example, Mrs A is an 82-year-old married woman with an MMSE score of 7. She had vision and hearing problems and feels abandoned by her husband because he did not move to the institution with her. She sometimes suspects him of infidelity and is reported to show major improvement when staff members manifest nonverbal expressions of caring, such as hugs and attention.
Agree The second most common response (42%) was agreeing with the residents concerning their perception of reality, without acknowledging that it is not rooted in actual fact, in order to help the person calm down. This occurred for the majority (75%) of the persons who felt abandoned by their family and for over half (57%) of those who felt in danger. The combination of trying to calm the person down and agreeing with the person was common, occurring in about a third (36%) of the participants. For example, Mrs B, a 75-year-old widow with an MMSE of 10, believes she spent the day at her or her son’s home. She does not understand who the staff members are or why they bother her. Staff members agree with the delusion and try to explain their purpose in a calming manner. Agreeing with the delusion was also reported as helpful in the case of Ms C, a 91-year-old widow with an MMSE score of 8, who had worked as a social worker. Her delusion involves having written and submitted an unpleasant report and she is worried of the reaction of others. When those who surround her accept the delusion, yet provide encouragement, she is relieved. Agreeing with a delusion may not require any additional intervention when a delusion has no negative consequences. For example, Mr D, an 81-year-old man with an MMSE score of 17, experiences a misidentification delusion in which he thinks one of the caregivers is his daughter and at times mistook his son for his older brother. The informant concluded
that no intervention was needed as the delusion neither had negative consequences nor was it accompanied by any emotional discomfort.
Argue The converse reaction is arguing with the older person about reality by telling the person that he or she is wrong, which occurred in 37% of the cases. This was the reaction in half the cases of delusion of theft and for 40% of the instances when a person manifested delusions of misidentification and when thinking the house was not their home. For example, Ms E is an 83-year-old Holocaust survivor with an MMSE score of 11 who is worried about where she will sleep and who will take care of her. She is expecting to leave though it is not clear to where. At times, she thinks her son was arrested. In response, staff members tell her she is wrong and explain that she is staying at the nursing home, her son is at work, and everything is fine. Another example is that of Ms F, an 86-year-old widow with an MMSE score of 6, who is also a Holocaust survivor. Her delusion involves making up stories about the nursing home, the staff, and the residents. For instance, she had heard on the news that a lot of older persons died during the previous winter and said that her specific nursing home has the highest death rate, or that all the darkskinned nurses are of Moroccan origin. In response, staff members tell her she is wrong and then ignore her.
Explain Staff members explained the situation in 18% of delusions by describing the reasons or mitigating circumstances for the situation. This was a reaction for 57% of the cases of delusion of danger. In contrast, this reaction was not used with any of the participants with delusions of abandonment, misidentification, and other delusions. For example, Mr G is a 88-year-old man with an MMSE score of 18 and with hearing and vision impairments. The reported delusion was his request to go back to his ‘‘home’’ where his wife is. He does not understand why his
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American Journal of Alzheimer’s Disease & Other Dementias® 29(4)
390 wife is at home while he is at the institution. He says that he spoke with his wife and that she agreed they could live together and is willing to come to live in the nursing home. He asks whether they could live together in his room. The staff members explain that his wife is far away from him and will be coming in a day or two. They also explained that he stays at the institution for medical treatment.
Involve the Family Staff members involved family members to try to calm the older person in 5% of the cases. An example of involving the family pertains to Mr H, an 80-year-old person with an MMSE score of 14. When, he asks to go to his parents’, calling on his children for help is an effective intervention. Similarly Mr G, who wants to go home to his wife, is sometimes taken by his son for a ride in the car through the fields. On one occasion, it had a noticeable effect decreasing his request to go home.
Ignoring Staff members reported ignoring as the only reaction for 3 (8%) participants, with 2 of them involving a delusion of theft. A nontheft example is that of Mr I, a 92-year-old blind widower with an MMSE score of 1. His delusion involves asking for the time and then saying he must hurry because the train leaves in 15 minutes. He claims he is late for the train and has to take his suitcase and leave: ‘‘We have to go, we have to leave now.’’ The destination is always the same city. Sometimes he wishes to go to funerals of people who died a long time ago. Staff members’ responses on the EAPSID indicate that they think there is no need to intervene with this delusion.
Tailored Symptom-Specific Interventions Searching for missing items. Staff members searched for the missing items and showed them to residents in 10% of cases, all involving a delusion of theft, that is, in about a quarter of the reports of delusions of theft.
Once the manager provided a signature, the letter was instrumental in calming down Mr H. A similar intervention, utilizing a power figure to strengthen a calming message, was applied with Ms J, an 82-year-old divorcee with an MMSE score of 24. Her delusion involved the belief that specific residents wish to harm her. Staff members tried to tell her she was wrong and tried to calm her down, without much success. Her daughter ignored the complaints and her grandchildren explained that she was mistaken, none of which made a difference. What did alleviate her fears to a large degree was a conversation with the director of the facility who spoke with her in an authoritative manner and promised to protect her from the residents of whom she was scared. A comparable intervention was successful for Mr D who thought his (deceased) mother was sick and needed to see a doctor and who also described danger to property. Staff members tried to calm him down by telling him that his brother or the police would take care of the problem. Pet therapy. For Ms K, a 73-year-old widow with an MMSE score of 4, whose delusions involved thinking that her parents are waiting for her and that staff members have to do something undefined, contact with dogs was reported to result in major improvement. Similarly, for Ms L, an 87-year-old woman with an MMSE score of 3 and hearing impairment, who thinks she is at her parents’ home and taking care of her mother or that she is taking care of children, interventions of contact with dogs and with a small child resulted in significant improvement. Compliance with request based on delusion. For example, Mr G sometimes thinks soldiers are waiting for him outside in the middle of the night and he needs to provide food and drinks for the soldiers, otherwise they will ‘‘go wild.’’ He threatens that if he will not be helped, he will use his cane as a weapon. Sometimes the staff members bring him food and tell him they will give it to the soldiers. Change of location. Mr M, a 95-year-old widower with an MMSE score of 4, accuses his roommate of stealing his clothing. In addition to telling Mr M that he is wrong and talking with him about other topics, staff members try to seat the accused resident away from Mr M.
Outdoor outing. A walk outside the institution with staff members was sometimes helpful when Mr H, an 80-year-old man with an MMSE score of 14, insisted that the nursing home was not his home. As mentioned earlier, a ride outside the institution with his son was once helpful for the same delusion for Mr G.
Reported failed interventions. Sometimes the informant reported which interventions failed. For example, for Mr H, interventions that were reported to be unsuccessful included reality orientation and physical restraint.
Utilization of authority figures. For example, Mr H had delusions that the army was looking for him because he had committed some misdeed whose nature was not clear. When trying to calm him down, it became clear that he needed more than assurances. The manager of the nursing home therefore composed a letter from the army and printed it on paper with a formal letterhead downloaded from the internet. Mr H was interested in the letter but pointed out to the lack of signature.
Reactions of other residents. We did not systematically ask about other residents’ reactions to the delusions; yet, some interviewees volunteered the information. In most cases in which reports were provided, they described other residents ignoring the behavior associated with the delusion. There were several examples of residents reprimanding the person for the delusion and sporadic examples of residents agreeing or arguing with the person concerning the delusion.
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Table 2. Frequencies and Statistically Significant Differences Between Institutions in Interventions.a
Number of delusions Explain Agree Involve family Argue Other/symptom specific Try to calm down/talk about other issues Ignore a
Sanatorium, %
Geriatric Hospitals, %
Nursing Homes, %
Chi-square
P Value
17 35.3 76.5 17.6 17.6 76.5 82.4 0
18 5.6 22.2 0 55.6 11.1 55.6 11.1
15 6.7 26.7 0 40 0 80 6.7
7.14 12.63 6.19 5.36 26.96 3.79 1.93
.028 .002 .045 .068 .000 .15 .381
The following types of responses did not differ by type of nursing home: try to calm down/talk about other issues, ignore.
Reactions of family members. Similar to reports concerning other residents, we did not solicit systematic information concerning the reactions of family members but those were sometimes volunteered. For example, in response to Ms J, described above as fearing danger from other residents, her daughter ignores the references to danger while her grandchildren explain to her that she is wrong. Multiple reactions. On average, staff members reported 2 reactions per delusion, ranging from an average of 1.6 in response to misidentification to 3 for a delusion of danger (Table 1). Reporting ‘‘calm down’’ as a reaction was likely to be accompanied with additional reactions, including ‘‘agree’’ (in 50% of the reports of ‘‘calm down’’), symptom-specific responses (35%), argue (29%), explain (18%), search for missing object (6%), and involve family (3%). In contrast to calm down, a reaction of ‘‘ignoring’’ was unlikely to be accompanied with additional reactions. Differences in rates of intervention across nursing homes. Different nursing homes showed varying rates of interventions. Statistically significant differences were found with regard to the use of the following interventions: other/symptom specific, agreeing, explaining, and involving the family (Table 2). Caregivers in 1 institution—a sanatorium—provided more individualized interventions and were more likely to agree, explain, and involve family members when compared to the other institutions.
Discussion This article describes reactions to delusions for 38 nursing home residents for whom at least 1 delusion was described via the NPI-NH or the BEHAVE-AD, and the way it was treated was described on the EAPSID. To our knowledge, this is the first article to systematically describe the reactions and interventions provided by nursing home staff members to symptoms they characterize as delusions. The report is important on several counts. First, it exemplifies the multiple reactions and interventions available to caregivers. Caregivers may at times become bewildered by these behaviors and may not be aware of the availability of multiple intervention approaches. Indeed, in previous research, spousal caregivers of persons with Parkinson’s disease have employed a trial-and-error approach to
dealing with psychotic symptoms.13 In that study, caregivers reported some similar intervention approaches to those currently found (i.e., calming/reducing agitation, agreeing with the delusion, ignoring/disengaging, and avoiding triggers) as well as others (eg, social comparison).13 An understanding of a range of options also opens the possibility for future comparison of their relative efficacy as well as effects on both care recipient and caregiver. Further, examining interventions in connection to themes of delusions could also help to clarify which type of intervention may be most successful with which type of delusion. The description and classification of such nonpharmacological interventions present an initial nomenclature of such caregiving reactions, thus setting the foundation for future research on this topic. Although trying to calm the person was the most commonly reported reaction, this category is insufficient in its specificity. Indeed, the vast majority of reactions, including agreeing with the resident and symptom specific interventions, aim to calm the person and indeed calming a distressed person should be the ultimate goal of any intervention. Many of the interventions, such as an outdoor outing, a change of location, or interaction with pets, may calm the person with dementia while also providing an opportunity for positive engagement. Future research is needed to better operationalize the methods used in the response which caregivers described as trying to calm the person. The second most common reaction was to agree with the person, accepting his or her experience of reality and trying to calm the person from the point of view of that reality. However, from the point of the caregiver, the ‘‘delusional’’ reality is not the true reality. This issue was highlighted in several articles discussing lying and truth in caretaking of persons with dementia.38-45 According to a survey of formal caregivers,41 most participants used lies in their work with people with dementia. Our study is different in that, rather than having the caregiver as the unit of analysis, we have the care recipient as the unit of analysis. In this analysis, most of the cases of agreeing with the participant’s delusion, as well as several of the tailored interventions (eg, preparing the ‘‘forged’’ letter from the army), can be construed as lies. Types of lies have been classified as ‘‘going along with a misperception,’’ ‘‘withholding the truth,’’ ‘‘little white lies,’’ and ‘‘use of tricks.’’45 In our examples, the reactions fall into
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392 the ‘‘going along with a misperception’’ category. Despite labeling these actions as lies, Elvish et al40 developed a workshop that resulted in improved attitudes toward those lies when used to benefit the recipients. In an ethical analysis of such lies, all forms of lies and deceit were condemned on moral grounds. However, it was also claimed that due to the altered perception of reality because of the dementia, the person with dementia has a diminished capacity to differentiate between truth and falsehood.38 Accordingly, lying can be justified when it is necessary for the well-being of the person with dementia but if such well-being can be achieved without lying that is preferable. Clinical experience suggests that for many persons with dementia other methods may not be available. However, beyond this argument, there is a deeper reason to accept the resident’s delusion and that act may not need to be construed as a lie. As effective caregivers, it is imperative that staff members feel empathy with residents and try to understand reality from their point of view even when not completely shared by the caregiver. Indeed, some of the delusions are on the borderline between truth and falsehood. For example, when a resident feels abandoned by a spouse who stayed home while placing the resident in the nursing home, a sense of abandonment can be understood, even when simultaneously understanding that the spouse could not take care of the resident at home. Similarly, the sensation of something being stolen when it cannot be found can be experientially understood. Delusions could be indicative of an unmet need that the person with dementia is unable to communicate. For example, when Mr H asks to go to his parent’s or says that the nursing home is not his home, he perhaps wants to be in a place that is comfortable and familiar to him but is not able to communicate it in a clear way. Therefore, going along with the delusion or lying in the context to support the person with dementia can have a positive impact and help the person satisfy the unmet need. This empathy with a resident’s feelings is often necessary for good care, and accepting the resident’s point of view can be a condition for trust and rapport that allows the caregiver to navigate the experience to more positive realms. From this standpoint, the caregiver’s activity is a validating positive regard necessary for treatment rather than a lie. Of the different reactions and interventions used by staff, the most impressive are those that were tailored to the person and to the specific delusion. When interventions are personalized, they respond to the individualized needs, interests, and past experiences of the person with dementia and may therefore be more successful. Depending on the type of delusion, certain interventions will be more appropriate than others. For example, showing the supposedly stolen object is obviously only appropriate for a delusion of theft. Some interventions required a level of inventiveness and extra effort on the part of caregivers, calling on their skills and experience level, and were clearly designed to respond to the specific need (eg, fear) or request (eg, food for soldiers) manifested by the resident. Such attention to need and a willingness to invest in resourceful solutions was especially common in 1 nursing home; this level of care occurred in 76.5% of participants from that particular
nursing home as compared to 7% from all other nursing homes, suggesting that it may reflect an institutionalized level of practice style46 or quality of care. The culture of a nursing home or institution can affect the way delusions are approached and understood. This could be due to the differing infrastructures of the institutions that encourage, train, or support caregivers to provide more person-centered responses, or may not support those due to time constraints, budget, and so on. One type of individualized response that involves ‘‘explaining’’ and a reconstruction of reality to reverse the explanation is sometimes useful. If we take the example of Mr G, who requests to go home to his wife, telling him that his wife is the one who needs help (eg, that she is not feeling so well and needs to be elsewhere) rather than he is sometimes helpful. Such reverse explanation can also help clarify why the outdoor gate is locked, not to prevent the person with dementia from going out but to prevent strangers from coming in. The findings raise several hypotheses and questions. The type of reaction that caregivers manifest may depend on who is accused. For example, when the delusion is that of stealing, where they may be considered responsible for the property, they argue; but in cases of delusion of abandonment, where a family member is typically the accused, they do not need to defend themselves and therefore they agree with the delusion. In cases of a delusion of theft, there was a report of a search for the missing object in about a third of the cases. This raises the question what happens in the rest of the cases? Do they know where the item is and present it? Has the item been destroyed, thrown away or taken elsewhere? The differentiation between arguing and explaining is also unclear. In both cases, the caregiver is trying to convey a reality different from that presented in the delusion. Does the use of the different term reflect a different tone or does it depend on the responder’s linguistic preference? Future research needs to explore these issues. Another issue to be examined is the use of multiple interventions. For example, Mr M had a delusion of theft by another resident. The staff members reacted to the delusion by separating Mr M’s seat from the resident who is usually accused of stealing. They also tell him that he is wrong, talk with him about other issues, try to calm him down, and admonish him. Do certain reactions tend to co-occur? Under what circumstances? Are multiple reactions an indication of a more comprehensive approach to the problem, or a sign of the weak efficacy of each component? The relationship between the manifestations of the delusion and the staff reactions to it should also be examined, that is, what circumstances prompt staff members to elucidate the etiology of the delusion and to develop preventive or intervention approaches? Golander and Raz47 observed that the more the manifestation of the behavior interferes with the staff members’ work routines, the more likely they will be to try to clarify the reasons for the behavior and to devise a plan for handling it. This could be tested in future studies. The interview used in the study focused on staff caregivers, but comments about family caregivers’ reactions were sometimes mentioned. Those reactions may reflect an emotional
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response to the delusion whose nature depends on the strength, quality, and complexity of the relationship with the person with dementia. Families who understand and empathize with the person with dementia are more likely to be actively helpful in handling the behavior, whereas those who are ashamed of the person’s symptoms or find them offensive are more likely to have more difficulty in finding constructive solutions. These issues need to be examined in future research. In a similar vein, there seems to be a relationship between the staff members’ understanding of the disease, their empathy toward the person with dementia, and their patience and willingness to invest in more individualized solutions. Such solutions require knowledge of the person with dementia, his or her past, occupation, family life, and sense of identity. Furthermore, it stands to reason that staff members who are more satisfied with their work would be more willing to invest in finding the optimal solution and to learn from failures. Similarly, professional training may both directly enhance staff members’ understanding of the older person and behavior and may also indirectly affect empathy by increasing job satisfaction, as indicated by care staff responses on a United Kingdom survey.48 Indeed, top-performing care homes were found to consistently dedicate time and resources to dementia awareness and person-centered care training.49 In the current study, the differential nursing home culture and quality of care provided may be reflected in the higher rates of other/ symptom-specific interventions applied in a particular nursing home (the sanatorium); however, no data on caregivers’ training and quality of work were available. The intricate relationships among staff quality of work, knowledge and training, satisfaction, and level of practice may explain the differences in practice style and efficacy among the nursing homes and deserve further investigation. Current results are limited by a relatively small sample size and reliance on self-report of caregivers. Presumably, if any completely inappropriate responses were manifested toward the delusions, those would not be reported. These limitations notwithstanding, this article laid the groundwork for a nomenclature for future research which can increase its precision (eg, the type of activity used to calm down participants), increase the sample size, evaluate the impact of the different responses, and examine other residents’ and family members’ responses as well. Additional research regarding these topics is essential, especially given that hardly any information exists currently. Such knowledge could help improve the care and treatment of psychotic symptoms manifested by persons with dementia and could empower staff members to find better fitting solutions to care difficulties. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was funded in part by Marie Curie International grant #044946 of the
European Commission, by the Israel Science Foundation grant 1067/ 07, and by the Minerva Foundation.
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