Article
Delusions and Hallucinations in Persons With Dementia: A Comparison of the Perceptions of Formal and Informal Caregivers
Journal of Geriatric Psychiatry and Neurology 26(4) 251-258 ª The Author(s) 2013 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/0891988713509136 jgpn.sagepub.com
Jiska Cohen-Mansfield, MD1, Hava Golander, PhD1,2, and Jeremia Heinik, MD3
Abstract This study compares formal and informal caregivers’ perceptions of delusions and hallucinations in older persons with dementia (PWDs). The study population consisted of 151 community-dwelling PWDs aged 65 and older, 90 formal caregivers, and 151 informal caregivers residing in Israel. Assessments included the Behavioral Pathology in Alzheimer’s Disease Rating Scale, Neuropsychiatric Inventory, Etiological Assessment of Psychotic Symptoms in Dementia, Activities of Daily Living, and Mini-Mental State Examination. Informal caregivers reported higher rates and a higher level of severity of delusions and hallucinations than formal caregivers. Different caregivers showed varying degrees of emotional involvement, empathy, and efforts to find the meaning of the delusion for the person experiencing it. Family members and staff members may see different parts of the total picture. The combination of both points of view is essential in order to establish an accurate, comprehensive assessment of dementia symptoms and to enhance the understanding of the reality of the different parties. Keywords delusions, hallucinations, caregivers, Israel Received December 14, 2012. Received revised September 1, 2013. Accepted for publication September 2, 2013.
Introduction Hallucinations and delusions are common symptoms of all forms of dementia.1 Past studies have shown very wide ranges of prevalence estimates, with 4% to 41% of the individuals with Alzheimer disease (AD) found to experience hallucinations1-3 and between 16% and 70% to experience delusions,3-5 with persecutory delusions and visual and audio hallucinations being the most common.4,6,7 The experience of caregivers of persons with dementia (PWDs) can be affected by multiple factors. First, hallucinations and delusions can cause distress not only in the PWDs experiencing them but also in the person or people caring for him or her.8-10 Among the stressors for caregivers of PWDs, delusions were found to be among the most stressful, with hallucinations causing moderate distress.11 This is important as research shows that emotions can be transmitted among people,12,13 inferring that a negative feedback loop of worsening symptoms between patient and caregiver could be created. Several factors have been shown to affect caregiver reactions to and interpretations of dementia-related symptoms, including gender14 and cultural and ethnic factors.15-19 For example, compared to white caregivers, nonwhite caregivers were more likely to use faith and religion as a coping mechanism and were less likely to feel depressed and burdened by their caregiving.15 Finally, caregivers’ attitudes toward AD may affect their caregiving
experience. It has been reported that negative attitudes (eg, authoritarianism and social restrictiveness) and emotional reactions (eg, aggressiveness) of informal caregivers of PWDs have been associated with caregiver’s burden.14 The above-mentioned findings suggest that there may be differences in caregivers’ perception of dementia symptoms and, consequently, in their reports of these symptoms. Formal caregivers may have a more professional outlook, while informal caregivers’ perspective may be affected by their longer familiarity with the care receiver. In line with this, qualitative findings indicate that the characteristics of positive caregiving experiences among informal caregivers include high levels of empathy and understanding toward losses in the PWDs.20
1
Department of Health Promotion, School of Public Health, Sackler Faculty of Medicine, Herczeg Institute on Aging, Minerva Center for the Interdisciplinary Study of End of Life,, Tel Aviv University, Tel Aviv, Israel 2 Department of Nursing, Sackler, Faculty of Medicine, and Herczeg Institute on Aging, Tel Aviv University, Tel Aviv, Israel 3 Margoletz Psychogeriatric Center, Ichilov Hospital, Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel Corresponding Author: Jiska Cohen-Mansfield, Department of Health Promotion, Tel Aviv University, POB 39040, Ramat Aviv, Tel Aviv, 69978, Israel. Email: [email protected]
252 Although evidence on comparisons of formal and informal caregivers is scant, in one study, higher rates of delusions/hallucinations and suspiciousness were reported by informal caregivers of adult day center clients than by formal caregivers.21 The higher detection rates for informal caregivers are further supported by findings on depression rates in older persons. In a study of 125 older persons attending senior day care centers, informal caregivers rated the participants as more depressed in comparison to formal caregivers, and the magnitude of discrepancies was higher when the informants (formal and informal) had less contact with the older person.22 Also, in a study of 33 nursing home residents with AD, a higher percentage of participants were rated as depressed by family members than by formal caregivers.23 Taken together, this suggests that informal caregivers may perceive greater prevalence and severity of dementia symptoms in comparison to formal caregivers. Differences in caregivers’ perceptions of dementia symptoms may have implications for the type and quality of care for PWDs. An investigation of these differences may enable a more comprehensive assessment of dementia symptoms, promote a greater understanding of the reality of the PWD, and aid in the design of apt individually tailored interventions. Although some have compared rates of negative symptoms and behavior problems between formal and informal caregivers of adult day center clients,20 no studies that focused on the perceptions of formal and informal caregivers of delusions and hallucinations in PWDs were found. Accordingly, the current study aims to compare formal and informal caregivers’ perceptions of delusions and hallucinations in community-residing older PWDs in Israel. Considering the limited knowledge on the topic, and in order to increase convergent validity, both quantitative and qualitative assessments were utilized. For the current purposes, a formal caregiver is defined as a member of a day care center staff or a professional home care caregiver. An informal caregiver is defined as a close family member providing care. It is hypothesized that informal caregivers will report greater prevalence and severity of hallucinations and delusions in PWDs when compared to formal caregivers.
Methods Study Population The study population consisted of PWDs, formal caregivers, and informal caregivers. The PWDs were 151 community-dwelling persons aged 65 and older recruited from 16 adult day centers and through 8 support groups of the Alzheimer’s Association in Israel. Inclusion criteria were having a diagnosis of dementia in the medical chart, attending the facility for at least 2 months, and having at least minimal levels of verbal communication (on the premise that these are necessary for detecting delusions). Exclusion criteria were having a known acute or unstable medical condition, participating in another study, or diagnosis of mental retardation. Caregivers who participated in the study included 90 formal caregivers and 151 informal caregivers.
Journal of Geriatric Psychiatry and Neurology 26(4)
Assessments Behavioral Pathology in AD Rating Scale. Each type of delusion or hallucination is rated on a 4-point scale of severity. The reliability and validity of the Behavioral Pathology in AD Rating Scale (BEHAVE-AD) has been reported in multiple studies.24-27 Neuropsychiatric Inventory. Only the questions regarding delusions and hallucinations were administered. Each type of delusion or hallucination is marked as either occurring or not present. The reliability and the validity of the Neuropsychiatric Inventory (NPI) have been documented.27-30 Etiological Assessment of Psychotic Symptoms in Dementia. The Etiological Assessment of Psychotic Symptoms in Dementia (EAPSID) is an assessment tool developed for this study, which evaluates delusions and hallucinations in dementia from an etiological perspective, based on the nomenclature described by Cohen-Mansfield.31 The EAPSID inquires about the etiology of delusions and hallucinations in dementia through a functional analysis. It includes queries regarding the different types of delusion (eg, theft and abandonment) and hallucinations (eg, olfactory and auditory). Each such category includes openended items (eg, describe a specific situation in which the delusion occurred; describe the content of the delusion) and closeended items (eg, where does the delusion occur; frequency of occurrence). The open-ended responses on the EAPSID provided the qualitative data for the study. Functional Status. Functional status was assessed using an Activities of Daily Living questionnaire based on the Older Americans’ Resources and Services.32 Mini-Mental State Examination. The Mini-Mental State Examination (MMSE) was administered to PWDs unless available from a recent administration in the chart.33 Hebrew Verbal Proficiency. Hebrew verbal proficiency was assessed by the item, What is the level of verbal Hebrew proficiency? (Fluent, partial, not speaking Hebrew, and don’t know).
Procedure The study was approved by the Helsinki ethical committees of Tel Aviv University, Shoham Medical Center, and the Soraski Medical Center. We approached 24 adult day care centers to participate in the study, of whom 8 refused. We also approached 16 support group instructors of the Alzheimer’s Association, of whom 8 refused to cooperate with the study. The study was described to family members in 8 support meetings. Due to confidentiality issues, adult day care center staff members selected PWDs who met inclusion criteria and approached the responsible party for permission to be contacted by the research team. Consents were obtained from 151 closest family members of the PWDs34 who were the informal caregivers of the PWDs. These consents included their
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Table 1. Characteristics of Persons With Dementia.a Persons With Dementia M (SD)/% Age (range: 65-104) Gender Female Marital status Single Married Widowed Divorced MMSE (range 0-26) Education (range 0-20 years) Years of residence in Israel (range 5-91) Fluent in Hebrew
82.04 (6.82) 55.6 1.3 54.3 41.1 3.3 12.78 (6.28) 10.75 (4.06) 60.10 (15.13) 75.5
Abbreviations: M, mean; MMSE, Mini-Mental State Examination; SD, standard deviation. a N ¼ 151.
approval to interview the formal caregiver of PWD. The assessments described previously had been 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. All research assistants had a degree in social or health sciences and were trained by the principal investigator and by the research coordinator. The assessments were then administered to the formal and/or informal caregivers. According to the perceptions of the interviewing research assistants, of the formal and informal caregivers’ reports, 80.0% and 83.1% were rated as providing accurate information, 2.2% and 5.3% appeared to minimize or deny deficits, and none and 2% appeared to exaggerate deficits, respectively. Research assistant reports indicated that 9.3% of the formal caregivers and 15.6% of the informal caregivers had other difficulties in providing the information, such as the caregiver having difficulty in understanding the questions (reported for both formal [2.2%] and informal [6%] caregivers), not being well acquainted with the PWDs (8.9% and 0.7%, respectively), not being fully familiar with the PWDs’ routine (1.3%, informal caregivers), or lacking the motivation to answer the questions (2.2%, formal caregivers). 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 and the BEHAVE-AD were administered to all informants (with 2 exceptions, for whom only the NPI was administered) in a random order. The EAPSID was administered to family members and formal caregivers who reported delusions on the BEHAVE-AD and the NPI. For 13 PWDs, both staff members and family members completed the EAPSID.
Analytic Approach Quantitative Approach. We compared the percentage of PWDs who were reported to have each type of delusion and hallucination by formal and informal caregivers. These comparisons
were conducted for both the full response samples for each type of informant and also for the subsamples for whom both informal and formal caregiver responses were collected. Agreement rates and k values were calculated. We also compared the mean severity ratings across the type of informant. Qualitative Approach. The qualitative analysis aims to describe and interpret differences in perceptions of formal and informal caregivers of delusions and hallucinations in PWDs. The analysis is based on the interview data of 13 PWDs who had the EAPSID completed by both formal and informal caregivers. It aims to examine the extent to which caregivers (1) notice delusions and hallucinations, (2) try to understand the behaviors from the point of view and the past experience of the PWD, and (3) experience emotions in relationship with the delusion, hallucination, or the PWD. Due to the limited literature and theory on this phenomenon, we conducted an interpretive content analysis without preconceived categories35,36 and compared the narratives provided by the caregivers.
Results The characteristics of PWDs are presented in Table 1. The group of informal caregivers was composed predominantly of daughters (43%) and wives (30%) and, to a lower extent, sons (14%) and husbands (9%). Close to half of the informal caregivers (n ¼ 74, 49%) lived with the PWD. The group of formal caregivers included day care center caregivers (36.7%) and directors (27.8%), day care center social workers (22.2%) and occupational therapists (11.1%), and foreign home care caregivers (2.2%). The bulk of formal caregivers (88.9%) had been familiar with the PWD for a duration ranging between 6 months and more than 2 years. Mean MMSE score of the PWDs suggests moderate to severe cognitive impairment. On average, PWDs had been residing in Israel for about 60 years and had circa 11 years of education.
Quantitative Analysis Table 2 presents the prevalence of each delusion and hallucination type on the NPI and the BEHAVE-AD as reported by formal and informal caregivers who completed these questionnaires. As can be seen in the Table 2, informal caregivers consistently reported more delusions and hallucinations than formal caregivers. Table 3 includes data from the NPI and BEHAVE-AD where responses for both formal and informal caregivers were available. Informal caregivers tended to report more delusions and hallucinations than formal caregivers. Although both formal and informal caregivers agreed that a PWD did not manifest particular delusion, there often was little agreement regarding manifestation of a delusion. This is reflected in high levels of agreement rates (mostly more than 90%) between relatives and staff members but low k values. Table 4 compares the severity ratings of the delusions and the hallucinations given by relatives and staff members. Again,
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Table 2. Differences Between Formal and Informal Caregivers’ Reports of Delusions and Hallucinations on the NPI and the BEHAVEAD—Full Sample. NPI
BEHAVE-AD
Informal Formal Informal Formal Caregivers Caregivers Caregivers Caregivers (n ¼ 89), (n ¼ 151), (n ¼ 86), (n ¼ 150), % % % % Delusions One’s house is not one’s home Danger Theft Infidelity Imposter Abandonment TV figures Suspicion Other delusions Nonparanoid Hallucinations Auditory Talking to nonpresent people Visual Olfactory Haptic Gustatory Other hallucinations
5.6 10.1 0 3.4
7.9 15.2 5.3 12.6
1.1
9.3
9.0
17.9
4.7
26.0
9.3 0 1.2 4.7
17.3 5.3 4.0 3.3
5.8
5.3
2.3
6.7
1.1 1.1
9.9 9.9
2.3
8.7
2.2 0 0 0 0
15.9 2.0 2.6 1.3 0.7
2.3 0 1.2
18.0 2.0 3.3
0
1.3
Abbreviations: NPI, Neuropsychiatric Inventory; BEHAVE-AD, Behavioral Pathology in AD Rating Scale; TV, television.
relatives present consistently higher ratings of the severity of symptoms, although the differences reached significance only for the ‘‘house is not one’s home’’ delusion and for visual hallucinations.
Qualitative Analysis
Type of Delusion. Sometimes there is no overlap between the types of delusions described by the 2 informants. The daughter of Ms G reported that her mother thinks people on the television are making fun of her. Conversely, the caregiver in the senior center focused on requests by Ms G to go meet her mother’ or to go to her mother’s funeral or to go take care of her mother, ‘‘Suddenly she starts crying. She tells her caregiver that she needs to talk to her. She then says she has been informed that her mother is sick at home and that she needs to go and take care of her. She asks to go home to take care of her mother or to go to her mother’s funeral.’’ This tends to occur when Ms G is ready to go home and is waiting near the gate for her transportation. Empathy. Formal and informal caregivers show different levels of empathy or effort to understand the point of view of the PWD, with no consistent direction occurring between the 2 observers. For example, the son of Ms C attributes the delusion of the house is not her home to the dementia, which is causing a disconnection from reality. A different perspective is offered by the foreign caretaker. She explains that about 10 years ago, Ms C changed residence, and she wants to go to the previous home while perceiving her current home as belonging to someone else. In the case of Mr B, the family member, a sister, shows empathy and understanding, explaining that he has lived in his current house for the past 12 years but wants to go to the home in which he grew up. ‘‘The home where we grew up, we were a large family, is imprinted in memory.’’ For Mr D, both informants show empathy for a specific delusion but have different explanations and interpretations for its occurrence. The delusion, which involves Mr D talking to his reflection in the mirror or in a window, was generally viewed as positive by both sources. His daughter attributed it to loneliness due to loss of his wife and distancing of friends, while the social worker at the senior center explained that ‘‘For many years he was the owner of a successful company and loved his work very much. This is his way to compensate for having this position in life, to connect to that which made him feel good in the past.’’ Indeed, a number of examples provided by the social worker were business related, such as the sale of a tractor, whereas the conversations retold by the daughter tended to be more personal in nature, such as recounting that he would like to move to a different location.
The qualitative analyses yielded the following themes. Secondhand Delusion Information. Even when the informant reports a delusion, the report may be based on information provided by the other caregiver rather than on personal experience. This is true for both family and staff reports, but the origin of the report often stems from the caregiver who spends more time with the PWD. For example, the social worker of Ms A indicated that her report of Ms A’s delusion of one’s house is not one’s home is based on the son’s observations rather than on personal experience. Influence in the opposite direction also occurred: the family informant for Mr B (his sister) based her report of the same delusion on that of the formal caregiver (a foreign home care worker).
Emotional Involvement. Family members are more likely to incorporate their own feelings about the situation, for example, the sister of Mr B feels guilty for not moving in with him. Family members also perceive the situation as more bothersome. For Mr F, the caregiver at the day care center described a delusion of theft: ‘‘He thought that they stole his wallet, his coat. He did not get overly stressed by the situation, saying that if that is the case, they are welcome to it.’’ In contrast, his wife described it thus, ‘‘He looks for his cameras, says they have stolen them. He messes up the cupboards, he disassembled several cameras, and I put them together and hid them. Besides the cameras, the comb, the toothbrush, everything he hides, he does not find and says it was stolen. Mr F . . . says they stole his
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Table 3. Differences Between Formal and Informal Caregivers’ Reports of Delusions and Hallucinations on the NPI and the BEHAVE-AD for Persons With Dementia With Available Data From Both Assessments.a NPI (n ¼ 89) Formal Informal Caregivers, % Caregivers, % Delusions One’s house is not one’s home Danger Theft Infidelity Imposter Abandonment TV figures Suspicion Other/nonparanoid Hallucinations Auditory Talking to nonpresent people Visual Olfactory Haptic Gustatory Other hallucinations
BEHAVE-AD (n ¼ 85) Formal Informal % Agreement Caregivers, % Caregivers, %
k
5.6 10.1 0 3.4
6.7 13.5 3.4 12.4
.06 .19c .06
87.6 83.2 96.6 84.3
1.1
7.9
.02
91.0
9.0
15.7
.08
79.7
1.1 1.1 2.2 0 0 0 0
10.1 9.0 13.5 1.1 2.2 2.2 1.1
.02 .21d .04
88.8 92.1 84.3 98.9 97.8 97.7 98.9
k
% Agreement
4.7
22.4
.29b
82.3
9.4 0 1.2 4.7
16.5 1.2 3.5 2.4
.07 .49b .03
78.9 98.8 97.7 92.9
6.1 2.4
2.4 6.0
.04 .26d
91.5 94.1
2.4
5.9
.04
91.8
2.4 0 1.2
15.3 1.2 3.5
.04
82.4 98.8 97.7
0
2.4
.49b
97.6
Abbreviations: NPI, Neuropsychiatric Inventory; BEHAVE-AD, Behavioral Pathology in AD Rating Scale; TV, television. a Individual cells for which k could not be computed are blank. b p < .001. c .1 > p > .05. d p < .01.
coat, someone took something from his coat, they stole his things, cameras.’’ Understanding the Bigger Picture. Sometimes the reports complement each other to show a complex picture of the events or elucidate facets of the relationship between the family member and the PWD. The son of Ms A, for example, described the ‘‘house is not home’’ delusion in the following way: ‘‘She says it is not my home, she wants to go and look for it, people may have stolen things from there.’’ He explains the delusion as originating from a need for attention. ‘‘She calls all the relatives to be consoled. This has always been her personality, including staged attempts to commit suicide, but those traits have become more pronounced with the disease. Sometimes she uses it as a weapon, when others become upset with her, she says in response that she will go home, as this is not her home.’’ Although the social worker at the senior day care center reports that she is basing her report on the son’s account, she added some other details. Ms A’s delusions occur when she is in a rage, she is angry at her son, and she cries all the time. The social worker suggested that she may have moved from another house and may have some memory of a previous home. She had difficulties with her family and is a widow. Although the son portrays the delusion as a manipulative trick to get attention or pity and as an extension of a lifelong pattern, the social worker puts this explanation in the context of the mother’s suffering and of a discord between mother and son.
The interrelationship between the stories narrated by the 2 sources can also be seen in the recounting of the theft delusion for Mr E. His wife reported that ‘‘he says that they don’t give him sufficient food’’ and interpreted his filling his pockets with food from the senior center as possibly resulting from fear that they will steal his food. In contrast, the staff member at the senior day care center recounted that Mr E accuses other attendees of the center of stealing things from the center. This raises the possibility of a relationship between his own stealing of food and his projection of stealing on others at the center.
Discussion To our knowledge, this is the first study to compare informal caregiver’s and staff’s perceptions of delusions and hallucinations in community-residing older PWDs, and one of the few directly comparing them on any topic. In order to provide greater insight into the differences in perceptions, both quantitative and qualitative methods were employed. In line with the research hypothesis, the quantitative analysis found that informal caregivers reported higher rates of occurrence and a higher level of severity of delusions and hallucinations than that reported by formal caregivers. The qualitative analysis provides a more complex perspective, which suggests that the type of caregiving relationship, its history, and level of emotional involvement may affect the view of informal caregivers, and, therefore at times, it may
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Table 4. Comparison Between Formal and Informal Caregivers’ Reports on the Severity Ratings of Delusions and Hallucinations in Persons With Dementia on the BEHAVE-AD.a,b M (SD)
Delusions One’s house is not one’s home Theft Infidelity Imposter Abandonment Suspicion and paranoia Nonparanoid/other Hallucinations Auditory Visual Olfactory Haptic Other
Formal Caregivers
Informal Caregivers
t(df
.07 (.37)
.29 (.59)
3.52c
.14 (.47) 0 (0) .01 (.11) .11 (.51) .11 (.47)
.25 (.60) .01 (.11) .04 (.19) .02 (.19) .02 (.16)
1.38 1.00 1.42 1.41 1.54(df
¼ 81)
.06 (.39)
.11 (.47)
1.07(df
¼ 83)
.05 (.31) .04 (.24) 0 (0) .02 (.22) .00 (0)
.14 (.60) .32 (.81) .01 (.11) .08 (.47) .05 (.34)
1.27 3.05c 1.00 1.15 1.27
¼ 84)
Abbreviations: BEHAVE-AD, Behavioral Pathology in AD Rating Scale; M, mean; SD, standard deviation. a The range for each delusion/hallucination is 0 to 3. b n ¼ 85. c p .001.
be the formal caregiver who has a clearer and unbiased view of the reality. The quantitative differences in assessments of rate and severity of dementia symptoms by formal and informal caregivers may be due to several reasons, such as, family caregivers may spend more time with the older person and may therefore be exposed to more manifestations of delusions or hallucinations. Indeed, in this sample, about half of the informal caregivers lived with the PWDs in contrast to about 5% of the formal caregivers. Future research should further investigate this hypothesis. Another possibility is that because relatives are familiar with the person’s premorbid behavior, they are more sensitive to changes in behavior and are more likely to see them as abnormal. It is also possible that because the senior day care center involves PWDs in activities, they are engaged and calmer, and there are fewer opportunities for the display of delusions or hallucinations. Indeed, we have found other evidence that some delusions are related to boredom and inactivity.37 Still another option is that formal caregivers are better trained to handle the behaviors, and therefore when these occur, the behaviors are manifested in a milder form. Indeed, the use of a greater variety of intervention techniques was reported in the case of Mr H by the formal caregiver compared to the informal one, including distancing him from the surroundings, making tea, calming him down, taking him to bed, attempting to converse on something positive, and going for a walk outdoors. When qualitatively analyzing the content of the reported delusions, further differences emerged. Caregivers occasionally
reported a delusion based on secondhand information rather than personal experience. Different caregivers described different delusions for the same person. Delusions may be due to environment-specific triggers, and caregivers may be with the PWDs in different environments. An example can be seen with Ms G, for whom the outdoor travel from the senior day care seemed to trigger the delusion. When the same delusion was reported, there were often differences in interpretation. Several qualitative themes attested to the impact of the type of caregiving relationship, its history, and level of emotional involvement on the perceptions of caregivers. Sometimes, as in the case of Ms A, lifelong relational discord enters the interpretation of the behavior. The analysis showed that informal caregivers are more likely to become emotionally involved. Some relatives feel guilt and other emotions regarding their own role in the situation. The relative can be markedly more upset and can describe the behavior as being much more pervasive and disruptive compared to the description of the staff caregiver, as with Mr E. Also, different caregivers showed varying degrees of empathy and efforts to find the meaning of the delusion for the person experiencing it.37 Future research should examine whether this is more true in informal caregivers. Finally, family members and staff members may see different parts of the total picture. The qualitative analysis is based on 13 triads of PWD, formal caregiver, and informal caregiver. Future studies should examine larger samples of these triads. The qualitative outcomes relate to differences in the perceptions of caregivers of PWDs and may or may not be generalizable to other contexts. Notwithstanding these limitations, the findings suggest that the combination of both points of view is essential in order to establish an accurate, comprehensive assessment of dementia symptoms and to enhance the understanding of the reality of the PWD. Stated differently, findings suggest that the assessment of dementia symptoms based on a single source of information (ie, formal or informal caregiver) may be very limited. Research projects that rely solely on either formal or informal caregiver’s reports may yield considerably different results, and this discrepancy may reflect differences in caregivers’ perception rather than facts. Furthermore, when clinicians need to intervene to address symptoms, they need to have an accurate and complete description of symptoms and the factors that may trigger, exacerbate, or explain them. Our findings underscore the need to integrate the perspectives of different types of caregivers in this process. This also highlights the importance of being mindful of the type of informant used when designing research or intervention and when interpreting results. Finally, this has important implications for the provision of personalized care, such as via individually tailored nonpharmacological interventions,38 and for the planning and designing of options for these interventions. Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work
Cohen-Mansfield et al was supported by the Israel Science Foundation grant 1067/07, by the Israel Ministry of Health grant 3000004003, and by the Minerva-Stiftung Foundation Grant number 31583295000.
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257 17. Mahoney DF, Cloutterbuck J, Neary S, Zhan L. African American, Chinese, and Latino family caregivers’ impressions of the onset and diagnosis of dementia: cross-cultural similarities and differences. Gerontologist. 2005;45(6):783-792. 18. Pinquart M, Sorensen S. Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: a meta-analysis. Gerontologist. 2005;45(1):90-106. 19. Hinton L, Franz CE, Yeo G, Levkoff SE. Conceptions of dementia in a multiethnic sample of family caregivers. J Am Geriatr Soc. 2005;53(8):1405-1410. 20. Teresi JA, Holmes D, Dichter E, Koren MJ, Ramirez M, Fairchild S. Prevalence of behavior disorder and disturbance to family and staff in a sample of adult day health care clients. Gerontologist. 1997;37(5):629-639. 21. Cohen-Mansfield J, Werner P. Depression in senior day care participants: ratings by different informants. Depression. 1994;2(5): 272-277. 22. Lukovitz FG, McDaniel KD. Behavioral disturbance in severe Alzheimer’s disease: a comparison of family member and nursing reporting. J Am Geriatr Soc. 1992;40(9):891-895. 23. Shim B, Barroso J, Davis LL. A comparative qualitative analysis of stories of spousal caregivers of people with dementia: negative, ambivalent, and positive experiences. Int J Nurs Stud. 2012;49(2): 220-229. 24. Reisberg B, Auer S, Monteiro I. Behavioral pathology in Alzheimer’s disease (BEHAVE-AD) rating scale. Int Psychogeriatr. 1996;8(suppl 3):301-308. 25. Auer SR, Monteiro IM, Reisberg B. The empirical behavioral pathology in Alzheimer’s disease (E-BEHAVE-AD) rating scale. Int Psychogeriatr. 1996;8(2):247-266. 26. Sclan SG, Saillon A, Franssen E, Hugonot-Diener L, Saillon A, Reisberg B. The behavior pathology in Alzheimer’s disease rating scale (BEHAVE-AD): reliability and analysis of symptom category scores. Int J Geriatr Psychiatry. 1996;11(9): 819-830. 27. Cohen-Mansfield J, Golander H. The measurement of psychosis in dementia: a comparison of assessment tools. Alzheimer Dis Assoc Disord. 2011;25(2):101-108. 28. Cummings JL, Mega M, Gray K, Rosenbergthompson S, Carusi DA, Gornbein J. The neuropsychiatric inventory—comprehensive assessment of psychopathology in dementia. Neurology. 1994;44(12):2308-2314. 29. Wood S, Cummings JL, Hsu MA, et al. The use of the neuropsychiatric inventory in nursing home residents: Characterization and measurement. Am J Geriatr Psychiatry. 2000;8(1): 75-83. 30. Lange RT, Hopp GA, Kang N. Psychometric properties and factor structure of the neuropsychiatric inventory nursing home version in an elderly neuropsychiatric population. Int J Geriatr Psychiatry. 2004;19(5):440-448. 31. Cohen-Mansfield J. Nonpharmacologic interventions for psychotic symptoms in dementia. J Geriatr Psychiatry Neurol. 2003; 16(4):219-224. 32. Center for the Study of Aging and Human Development. Multidimensional Functional Assessment: The OARS Methodology. 1st ed. Durham, North Carolina: Duke University; 1975.
258 33. Folstein MF, Folstein SE, Mchugh PR. Mini-mental state— a practical method for grading cognitive state of patients for clinician. J Psychiatr Res. 1975;12(3):189-198. 34. Cohen-Mansfield J, Taylor L, Werner P. Delusions and hallucinations in an adult day care population: a longitudinal study. Am J Geriatr Psychiatry. 1998;6(2):104-121. 35. Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277-1288.
Journal of Geriatric Psychiatry and Neurology 26(4) 36. Kondracki NL, Wellman NS, Amundson DR. Content analysis: review of methods and their applications in nutrition education. J Nutr Educ Behav. 2002;34(4):224-230. 37. 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. 38. Cohen-Mansfield J. Nonpharmacological interventions for persons with dementia. Alzheim Care Q. 2005;6(2):129-145.
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Delusions and Hallucinations in Persons With Dementia: A Comparison of the Perceptions of Formal and Informal Caregivers
Journal of Geriatric Psychiatry and Neurology 26(4) 251-258 ª The Author(s) 2013 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/0891988713509136 jgpn.sagepub.com
Jiska Cohen-Mansfield, MD1, Hava Golander, PhD1,2, and Jeremia Heinik, MD3
Abstract This study compares formal and informal caregivers’ perceptions of delusions and hallucinations in older persons with dementia (PWDs). The study population consisted of 151 community-dwelling PWDs aged 65 and older, 90 formal caregivers, and 151 informal caregivers residing in Israel. Assessments included the Behavioral Pathology in Alzheimer’s Disease Rating Scale, Neuropsychiatric Inventory, Etiological Assessment of Psychotic Symptoms in Dementia, Activities of Daily Living, and Mini-Mental State Examination. Informal caregivers reported higher rates and a higher level of severity of delusions and hallucinations than formal caregivers. Different caregivers showed varying degrees of emotional involvement, empathy, and efforts to find the meaning of the delusion for the person experiencing it. Family members and staff members may see different parts of the total picture. The combination of both points of view is essential in order to establish an accurate, comprehensive assessment of dementia symptoms and to enhance the understanding of the reality of the different parties. Keywords delusions, hallucinations, caregivers, Israel Received December 14, 2012. Received revised September 1, 2013. Accepted for publication September 2, 2013.
Introduction Hallucinations and delusions are common symptoms of all forms of dementia.1 Past studies have shown very wide ranges of prevalence estimates, with 4% to 41% of the individuals with Alzheimer disease (AD) found to experience hallucinations1-3 and between 16% and 70% to experience delusions,3-5 with persecutory delusions and visual and audio hallucinations being the most common.4,6,7 The experience of caregivers of persons with dementia (PWDs) can be affected by multiple factors. First, hallucinations and delusions can cause distress not only in the PWDs experiencing them but also in the person or people caring for him or her.8-10 Among the stressors for caregivers of PWDs, delusions were found to be among the most stressful, with hallucinations causing moderate distress.11 This is important as research shows that emotions can be transmitted among people,12,13 inferring that a negative feedback loop of worsening symptoms between patient and caregiver could be created. Several factors have been shown to affect caregiver reactions to and interpretations of dementia-related symptoms, including gender14 and cultural and ethnic factors.15-19 For example, compared to white caregivers, nonwhite caregivers were more likely to use faith and religion as a coping mechanism and were less likely to feel depressed and burdened by their caregiving.15 Finally, caregivers’ attitudes toward AD may affect their caregiving
experience. It has been reported that negative attitudes (eg, authoritarianism and social restrictiveness) and emotional reactions (eg, aggressiveness) of informal caregivers of PWDs have been associated with caregiver’s burden.14 The above-mentioned findings suggest that there may be differences in caregivers’ perception of dementia symptoms and, consequently, in their reports of these symptoms. Formal caregivers may have a more professional outlook, while informal caregivers’ perspective may be affected by their longer familiarity with the care receiver. In line with this, qualitative findings indicate that the characteristics of positive caregiving experiences among informal caregivers include high levels of empathy and understanding toward losses in the PWDs.20
1
Department of Health Promotion, School of Public Health, Sackler Faculty of Medicine, Herczeg Institute on Aging, Minerva Center for the Interdisciplinary Study of End of Life,, Tel Aviv University, Tel Aviv, Israel 2 Department of Nursing, Sackler, Faculty of Medicine, and Herczeg Institute on Aging, Tel Aviv University, Tel Aviv, Israel 3 Margoletz Psychogeriatric Center, Ichilov Hospital, Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel Corresponding Author: Jiska Cohen-Mansfield, Department of Health Promotion, Tel Aviv University, POB 39040, Ramat Aviv, Tel Aviv, 69978, Israel. Email: [email protected]
252 Although evidence on comparisons of formal and informal caregivers is scant, in one study, higher rates of delusions/hallucinations and suspiciousness were reported by informal caregivers of adult day center clients than by formal caregivers.21 The higher detection rates for informal caregivers are further supported by findings on depression rates in older persons. In a study of 125 older persons attending senior day care centers, informal caregivers rated the participants as more depressed in comparison to formal caregivers, and the magnitude of discrepancies was higher when the informants (formal and informal) had less contact with the older person.22 Also, in a study of 33 nursing home residents with AD, a higher percentage of participants were rated as depressed by family members than by formal caregivers.23 Taken together, this suggests that informal caregivers may perceive greater prevalence and severity of dementia symptoms in comparison to formal caregivers. Differences in caregivers’ perceptions of dementia symptoms may have implications for the type and quality of care for PWDs. An investigation of these differences may enable a more comprehensive assessment of dementia symptoms, promote a greater understanding of the reality of the PWD, and aid in the design of apt individually tailored interventions. Although some have compared rates of negative symptoms and behavior problems between formal and informal caregivers of adult day center clients,20 no studies that focused on the perceptions of formal and informal caregivers of delusions and hallucinations in PWDs were found. Accordingly, the current study aims to compare formal and informal caregivers’ perceptions of delusions and hallucinations in community-residing older PWDs in Israel. Considering the limited knowledge on the topic, and in order to increase convergent validity, both quantitative and qualitative assessments were utilized. For the current purposes, a formal caregiver is defined as a member of a day care center staff or a professional home care caregiver. An informal caregiver is defined as a close family member providing care. It is hypothesized that informal caregivers will report greater prevalence and severity of hallucinations and delusions in PWDs when compared to formal caregivers.
Methods Study Population The study population consisted of PWDs, formal caregivers, and informal caregivers. The PWDs were 151 community-dwelling persons aged 65 and older recruited from 16 adult day centers and through 8 support groups of the Alzheimer’s Association in Israel. Inclusion criteria were having a diagnosis of dementia in the medical chart, attending the facility for at least 2 months, and having at least minimal levels of verbal communication (on the premise that these are necessary for detecting delusions). Exclusion criteria were having a known acute or unstable medical condition, participating in another study, or diagnosis of mental retardation. Caregivers who participated in the study included 90 formal caregivers and 151 informal caregivers.
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Assessments Behavioral Pathology in AD Rating Scale. Each type of delusion or hallucination is rated on a 4-point scale of severity. The reliability and validity of the Behavioral Pathology in AD Rating Scale (BEHAVE-AD) has been reported in multiple studies.24-27 Neuropsychiatric Inventory. Only the questions regarding delusions and hallucinations were administered. Each type of delusion or hallucination is marked as either occurring or not present. The reliability and the validity of the Neuropsychiatric Inventory (NPI) have been documented.27-30 Etiological Assessment of Psychotic Symptoms in Dementia. The Etiological Assessment of Psychotic Symptoms in Dementia (EAPSID) is an assessment tool developed for this study, which evaluates delusions and hallucinations in dementia from an etiological perspective, based on the nomenclature described by Cohen-Mansfield.31 The EAPSID inquires about the etiology of delusions and hallucinations in dementia through a functional analysis. It includes queries regarding the different types of delusion (eg, theft and abandonment) and hallucinations (eg, olfactory and auditory). Each such category includes openended items (eg, describe a specific situation in which the delusion occurred; describe the content of the delusion) and closeended items (eg, where does the delusion occur; frequency of occurrence). The open-ended responses on the EAPSID provided the qualitative data for the study. Functional Status. Functional status was assessed using an Activities of Daily Living questionnaire based on the Older Americans’ Resources and Services.32 Mini-Mental State Examination. The Mini-Mental State Examination (MMSE) was administered to PWDs unless available from a recent administration in the chart.33 Hebrew Verbal Proficiency. Hebrew verbal proficiency was assessed by the item, What is the level of verbal Hebrew proficiency? (Fluent, partial, not speaking Hebrew, and don’t know).
Procedure The study was approved by the Helsinki ethical committees of Tel Aviv University, Shoham Medical Center, and the Soraski Medical Center. We approached 24 adult day care centers to participate in the study, of whom 8 refused. We also approached 16 support group instructors of the Alzheimer’s Association, of whom 8 refused to cooperate with the study. The study was described to family members in 8 support meetings. Due to confidentiality issues, adult day care center staff members selected PWDs who met inclusion criteria and approached the responsible party for permission to be contacted by the research team. Consents were obtained from 151 closest family members of the PWDs34 who were the informal caregivers of the PWDs. These consents included their
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Table 1. Characteristics of Persons With Dementia.a Persons With Dementia M (SD)/% Age (range: 65-104) Gender Female Marital status Single Married Widowed Divorced MMSE (range 0-26) Education (range 0-20 years) Years of residence in Israel (range 5-91) Fluent in Hebrew
82.04 (6.82) 55.6 1.3 54.3 41.1 3.3 12.78 (6.28) 10.75 (4.06) 60.10 (15.13) 75.5
Abbreviations: M, mean; MMSE, Mini-Mental State Examination; SD, standard deviation. a N ¼ 151.
approval to interview the formal caregiver of PWD. The assessments described previously had been 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. All research assistants had a degree in social or health sciences and were trained by the principal investigator and by the research coordinator. The assessments were then administered to the formal and/or informal caregivers. According to the perceptions of the interviewing research assistants, of the formal and informal caregivers’ reports, 80.0% and 83.1% were rated as providing accurate information, 2.2% and 5.3% appeared to minimize or deny deficits, and none and 2% appeared to exaggerate deficits, respectively. Research assistant reports indicated that 9.3% of the formal caregivers and 15.6% of the informal caregivers had other difficulties in providing the information, such as the caregiver having difficulty in understanding the questions (reported for both formal [2.2%] and informal [6%] caregivers), not being well acquainted with the PWDs (8.9% and 0.7%, respectively), not being fully familiar with the PWDs’ routine (1.3%, informal caregivers), or lacking the motivation to answer the questions (2.2%, formal caregivers). 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 and the BEHAVE-AD were administered to all informants (with 2 exceptions, for whom only the NPI was administered) in a random order. The EAPSID was administered to family members and formal caregivers who reported delusions on the BEHAVE-AD and the NPI. For 13 PWDs, both staff members and family members completed the EAPSID.
Analytic Approach Quantitative Approach. We compared the percentage of PWDs who were reported to have each type of delusion and hallucination by formal and informal caregivers. These comparisons
were conducted for both the full response samples for each type of informant and also for the subsamples for whom both informal and formal caregiver responses were collected. Agreement rates and k values were calculated. We also compared the mean severity ratings across the type of informant. Qualitative Approach. The qualitative analysis aims to describe and interpret differences in perceptions of formal and informal caregivers of delusions and hallucinations in PWDs. The analysis is based on the interview data of 13 PWDs who had the EAPSID completed by both formal and informal caregivers. It aims to examine the extent to which caregivers (1) notice delusions and hallucinations, (2) try to understand the behaviors from the point of view and the past experience of the PWD, and (3) experience emotions in relationship with the delusion, hallucination, or the PWD. Due to the limited literature and theory on this phenomenon, we conducted an interpretive content analysis without preconceived categories35,36 and compared the narratives provided by the caregivers.
Results The characteristics of PWDs are presented in Table 1. The group of informal caregivers was composed predominantly of daughters (43%) and wives (30%) and, to a lower extent, sons (14%) and husbands (9%). Close to half of the informal caregivers (n ¼ 74, 49%) lived with the PWD. The group of formal caregivers included day care center caregivers (36.7%) and directors (27.8%), day care center social workers (22.2%) and occupational therapists (11.1%), and foreign home care caregivers (2.2%). The bulk of formal caregivers (88.9%) had been familiar with the PWD for a duration ranging between 6 months and more than 2 years. Mean MMSE score of the PWDs suggests moderate to severe cognitive impairment. On average, PWDs had been residing in Israel for about 60 years and had circa 11 years of education.
Quantitative Analysis Table 2 presents the prevalence of each delusion and hallucination type on the NPI and the BEHAVE-AD as reported by formal and informal caregivers who completed these questionnaires. As can be seen in the Table 2, informal caregivers consistently reported more delusions and hallucinations than formal caregivers. Table 3 includes data from the NPI and BEHAVE-AD where responses for both formal and informal caregivers were available. Informal caregivers tended to report more delusions and hallucinations than formal caregivers. Although both formal and informal caregivers agreed that a PWD did not manifest particular delusion, there often was little agreement regarding manifestation of a delusion. This is reflected in high levels of agreement rates (mostly more than 90%) between relatives and staff members but low k values. Table 4 compares the severity ratings of the delusions and the hallucinations given by relatives and staff members. Again,
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Table 2. Differences Between Formal and Informal Caregivers’ Reports of Delusions and Hallucinations on the NPI and the BEHAVEAD—Full Sample. NPI
BEHAVE-AD
Informal Formal Informal Formal Caregivers Caregivers Caregivers Caregivers (n ¼ 89), (n ¼ 151), (n ¼ 86), (n ¼ 150), % % % % Delusions One’s house is not one’s home Danger Theft Infidelity Imposter Abandonment TV figures Suspicion Other delusions Nonparanoid Hallucinations Auditory Talking to nonpresent people Visual Olfactory Haptic Gustatory Other hallucinations
5.6 10.1 0 3.4
7.9 15.2 5.3 12.6
1.1
9.3
9.0
17.9
4.7
26.0
9.3 0 1.2 4.7
17.3 5.3 4.0 3.3
5.8
5.3
2.3
6.7
1.1 1.1
9.9 9.9
2.3
8.7
2.2 0 0 0 0
15.9 2.0 2.6 1.3 0.7
2.3 0 1.2
18.0 2.0 3.3
0
1.3
Abbreviations: NPI, Neuropsychiatric Inventory; BEHAVE-AD, Behavioral Pathology in AD Rating Scale; TV, television.
relatives present consistently higher ratings of the severity of symptoms, although the differences reached significance only for the ‘‘house is not one’s home’’ delusion and for visual hallucinations.
Qualitative Analysis
Type of Delusion. Sometimes there is no overlap between the types of delusions described by the 2 informants. The daughter of Ms G reported that her mother thinks people on the television are making fun of her. Conversely, the caregiver in the senior center focused on requests by Ms G to go meet her mother’ or to go to her mother’s funeral or to go take care of her mother, ‘‘Suddenly she starts crying. She tells her caregiver that she needs to talk to her. She then says she has been informed that her mother is sick at home and that she needs to go and take care of her. She asks to go home to take care of her mother or to go to her mother’s funeral.’’ This tends to occur when Ms G is ready to go home and is waiting near the gate for her transportation. Empathy. Formal and informal caregivers show different levels of empathy or effort to understand the point of view of the PWD, with no consistent direction occurring between the 2 observers. For example, the son of Ms C attributes the delusion of the house is not her home to the dementia, which is causing a disconnection from reality. A different perspective is offered by the foreign caretaker. She explains that about 10 years ago, Ms C changed residence, and she wants to go to the previous home while perceiving her current home as belonging to someone else. In the case of Mr B, the family member, a sister, shows empathy and understanding, explaining that he has lived in his current house for the past 12 years but wants to go to the home in which he grew up. ‘‘The home where we grew up, we were a large family, is imprinted in memory.’’ For Mr D, both informants show empathy for a specific delusion but have different explanations and interpretations for its occurrence. The delusion, which involves Mr D talking to his reflection in the mirror or in a window, was generally viewed as positive by both sources. His daughter attributed it to loneliness due to loss of his wife and distancing of friends, while the social worker at the senior center explained that ‘‘For many years he was the owner of a successful company and loved his work very much. This is his way to compensate for having this position in life, to connect to that which made him feel good in the past.’’ Indeed, a number of examples provided by the social worker were business related, such as the sale of a tractor, whereas the conversations retold by the daughter tended to be more personal in nature, such as recounting that he would like to move to a different location.
The qualitative analyses yielded the following themes. Secondhand Delusion Information. Even when the informant reports a delusion, the report may be based on information provided by the other caregiver rather than on personal experience. This is true for both family and staff reports, but the origin of the report often stems from the caregiver who spends more time with the PWD. For example, the social worker of Ms A indicated that her report of Ms A’s delusion of one’s house is not one’s home is based on the son’s observations rather than on personal experience. Influence in the opposite direction also occurred: the family informant for Mr B (his sister) based her report of the same delusion on that of the formal caregiver (a foreign home care worker).
Emotional Involvement. Family members are more likely to incorporate their own feelings about the situation, for example, the sister of Mr B feels guilty for not moving in with him. Family members also perceive the situation as more bothersome. For Mr F, the caregiver at the day care center described a delusion of theft: ‘‘He thought that they stole his wallet, his coat. He did not get overly stressed by the situation, saying that if that is the case, they are welcome to it.’’ In contrast, his wife described it thus, ‘‘He looks for his cameras, says they have stolen them. He messes up the cupboards, he disassembled several cameras, and I put them together and hid them. Besides the cameras, the comb, the toothbrush, everything he hides, he does not find and says it was stolen. Mr F . . . says they stole his
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Table 3. Differences Between Formal and Informal Caregivers’ Reports of Delusions and Hallucinations on the NPI and the BEHAVE-AD for Persons With Dementia With Available Data From Both Assessments.a NPI (n ¼ 89) Formal Informal Caregivers, % Caregivers, % Delusions One’s house is not one’s home Danger Theft Infidelity Imposter Abandonment TV figures Suspicion Other/nonparanoid Hallucinations Auditory Talking to nonpresent people Visual Olfactory Haptic Gustatory Other hallucinations
BEHAVE-AD (n ¼ 85) Formal Informal % Agreement Caregivers, % Caregivers, %
k
5.6 10.1 0 3.4
6.7 13.5 3.4 12.4
.06 .19c .06
87.6 83.2 96.6 84.3
1.1
7.9
.02
91.0
9.0
15.7
.08
79.7
1.1 1.1 2.2 0 0 0 0
10.1 9.0 13.5 1.1 2.2 2.2 1.1
.02 .21d .04
88.8 92.1 84.3 98.9 97.8 97.7 98.9
k
% Agreement
4.7
22.4
.29b
82.3
9.4 0 1.2 4.7
16.5 1.2 3.5 2.4
.07 .49b .03
78.9 98.8 97.7 92.9
6.1 2.4
2.4 6.0
.04 .26d
91.5 94.1
2.4
5.9
.04
91.8
2.4 0 1.2
15.3 1.2 3.5
.04
82.4 98.8 97.7
0
2.4
.49b
97.6
Abbreviations: NPI, Neuropsychiatric Inventory; BEHAVE-AD, Behavioral Pathology in AD Rating Scale; TV, television. a Individual cells for which k could not be computed are blank. b p < .001. c .1 > p > .05. d p < .01.
coat, someone took something from his coat, they stole his things, cameras.’’ Understanding the Bigger Picture. Sometimes the reports complement each other to show a complex picture of the events or elucidate facets of the relationship between the family member and the PWD. The son of Ms A, for example, described the ‘‘house is not home’’ delusion in the following way: ‘‘She says it is not my home, she wants to go and look for it, people may have stolen things from there.’’ He explains the delusion as originating from a need for attention. ‘‘She calls all the relatives to be consoled. This has always been her personality, including staged attempts to commit suicide, but those traits have become more pronounced with the disease. Sometimes she uses it as a weapon, when others become upset with her, she says in response that she will go home, as this is not her home.’’ Although the social worker at the senior day care center reports that she is basing her report on the son’s account, she added some other details. Ms A’s delusions occur when she is in a rage, she is angry at her son, and she cries all the time. The social worker suggested that she may have moved from another house and may have some memory of a previous home. She had difficulties with her family and is a widow. Although the son portrays the delusion as a manipulative trick to get attention or pity and as an extension of a lifelong pattern, the social worker puts this explanation in the context of the mother’s suffering and of a discord between mother and son.
The interrelationship between the stories narrated by the 2 sources can also be seen in the recounting of the theft delusion for Mr E. His wife reported that ‘‘he says that they don’t give him sufficient food’’ and interpreted his filling his pockets with food from the senior center as possibly resulting from fear that they will steal his food. In contrast, the staff member at the senior day care center recounted that Mr E accuses other attendees of the center of stealing things from the center. This raises the possibility of a relationship between his own stealing of food and his projection of stealing on others at the center.
Discussion To our knowledge, this is the first study to compare informal caregiver’s and staff’s perceptions of delusions and hallucinations in community-residing older PWDs, and one of the few directly comparing them on any topic. In order to provide greater insight into the differences in perceptions, both quantitative and qualitative methods were employed. In line with the research hypothesis, the quantitative analysis found that informal caregivers reported higher rates of occurrence and a higher level of severity of delusions and hallucinations than that reported by formal caregivers. The qualitative analysis provides a more complex perspective, which suggests that the type of caregiving relationship, its history, and level of emotional involvement may affect the view of informal caregivers, and, therefore at times, it may
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Table 4. Comparison Between Formal and Informal Caregivers’ Reports on the Severity Ratings of Delusions and Hallucinations in Persons With Dementia on the BEHAVE-AD.a,b M (SD)
Delusions One’s house is not one’s home Theft Infidelity Imposter Abandonment Suspicion and paranoia Nonparanoid/other Hallucinations Auditory Visual Olfactory Haptic Other
Formal Caregivers
Informal Caregivers
t(df
.07 (.37)
.29 (.59)
3.52c
.14 (.47) 0 (0) .01 (.11) .11 (.51) .11 (.47)
.25 (.60) .01 (.11) .04 (.19) .02 (.19) .02 (.16)
1.38 1.00 1.42 1.41 1.54(df
¼ 81)
.06 (.39)
.11 (.47)
1.07(df
¼ 83)
.05 (.31) .04 (.24) 0 (0) .02 (.22) .00 (0)
.14 (.60) .32 (.81) .01 (.11) .08 (.47) .05 (.34)
1.27 3.05c 1.00 1.15 1.27
¼ 84)
Abbreviations: BEHAVE-AD, Behavioral Pathology in AD Rating Scale; M, mean; SD, standard deviation. a The range for each delusion/hallucination is 0 to 3. b n ¼ 85. c p .001.
be the formal caregiver who has a clearer and unbiased view of the reality. The quantitative differences in assessments of rate and severity of dementia symptoms by formal and informal caregivers may be due to several reasons, such as, family caregivers may spend more time with the older person and may therefore be exposed to more manifestations of delusions or hallucinations. Indeed, in this sample, about half of the informal caregivers lived with the PWDs in contrast to about 5% of the formal caregivers. Future research should further investigate this hypothesis. Another possibility is that because relatives are familiar with the person’s premorbid behavior, they are more sensitive to changes in behavior and are more likely to see them as abnormal. It is also possible that because the senior day care center involves PWDs in activities, they are engaged and calmer, and there are fewer opportunities for the display of delusions or hallucinations. Indeed, we have found other evidence that some delusions are related to boredom and inactivity.37 Still another option is that formal caregivers are better trained to handle the behaviors, and therefore when these occur, the behaviors are manifested in a milder form. Indeed, the use of a greater variety of intervention techniques was reported in the case of Mr H by the formal caregiver compared to the informal one, including distancing him from the surroundings, making tea, calming him down, taking him to bed, attempting to converse on something positive, and going for a walk outdoors. When qualitatively analyzing the content of the reported delusions, further differences emerged. Caregivers occasionally
reported a delusion based on secondhand information rather than personal experience. Different caregivers described different delusions for the same person. Delusions may be due to environment-specific triggers, and caregivers may be with the PWDs in different environments. An example can be seen with Ms G, for whom the outdoor travel from the senior day care seemed to trigger the delusion. When the same delusion was reported, there were often differences in interpretation. Several qualitative themes attested to the impact of the type of caregiving relationship, its history, and level of emotional involvement on the perceptions of caregivers. Sometimes, as in the case of Ms A, lifelong relational discord enters the interpretation of the behavior. The analysis showed that informal caregivers are more likely to become emotionally involved. Some relatives feel guilt and other emotions regarding their own role in the situation. The relative can be markedly more upset and can describe the behavior as being much more pervasive and disruptive compared to the description of the staff caregiver, as with Mr E. Also, different caregivers showed varying degrees of empathy and efforts to find the meaning of the delusion for the person experiencing it.37 Future research should examine whether this is more true in informal caregivers. Finally, family members and staff members may see different parts of the total picture. The qualitative analysis is based on 13 triads of PWD, formal caregiver, and informal caregiver. Future studies should examine larger samples of these triads. The qualitative outcomes relate to differences in the perceptions of caregivers of PWDs and may or may not be generalizable to other contexts. Notwithstanding these limitations, the findings suggest that the combination of both points of view is essential in order to establish an accurate, comprehensive assessment of dementia symptoms and to enhance the understanding of the reality of the PWD. Stated differently, findings suggest that the assessment of dementia symptoms based on a single source of information (ie, formal or informal caregiver) may be very limited. Research projects that rely solely on either formal or informal caregiver’s reports may yield considerably different results, and this discrepancy may reflect differences in caregivers’ perception rather than facts. Furthermore, when clinicians need to intervene to address symptoms, they need to have an accurate and complete description of symptoms and the factors that may trigger, exacerbate, or explain them. Our findings underscore the need to integrate the perspectives of different types of caregivers in this process. This also highlights the importance of being mindful of the type of informant used when designing research or intervention and when interpreting results. Finally, this has important implications for the provision of personalized care, such as via individually tailored nonpharmacological interventions,38 and for the planning and designing of options for these interventions. Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work
Cohen-Mansfield et al was supported by the Israel Science Foundation grant 1067/07, by the Israel Ministry of Health grant 3000004003, and by the Minerva-Stiftung Foundation Grant number 31583295000.
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