The problem with "problem behaviors": a systematic review of the association between individual patient behavioral and psychological symptoms and caregiver depression and burden within the dementia patient-caregiver dyad

ABSTRACT Background: Behavioral and psychological symptoms of dementia (BPSDs) are routinely cited as important predictors of caregiver burden and depression. Although BPSDs include a wide variety of patient behaviors, they are routinely grouped together as one construct to differentiate them from cognitive symptoms of dementia. Determining the specific BPSDs that result in increased depression and burden for caregivers may elucidate the stress process for caregivers and facilitate the development of effective interventions for caregivers. Methods: We conducted a systematic review of English-language articles published from 1990 to 2010 to determine whether there are known symptoms or symptom clusters which exert undue negative impact on caregiver depression and burden. Additionally, we review systems used for classifying BSPD symptom clusters and determine whether there have been any mechanisms studied by which individual BPSD symptoms negatively affect caregivers. Finally, we examine how the role of timing of symptoms has been examined within the literature. Results: Thirty-five original research articles examined the impact of an individual behavior symptom on caregiver burden or depression/depressive symptoms. The studies had no consistent system for categorizing symptoms. Although depression, aggression, and sleep disturbances were the most frequently identified patient symptoms to impact negatively on caregivers, a wide range of symptoms was associated with caregiver burden and depression. Conclusions: The evidence is not conclusive as to whether some symptoms are more important than others. The studies reviewed were largely exploratory relative to the differential impact of individual BPSDs and did not focus on testing causal mechanisms by which specific symptoms exert more impact on caregiver mental health than others. Future research may benefit from the re-conceptualization of BPSDs from the perspective of their impact on the caregiver to examine hypothesis-driven differences among BPSD symptom clusters.     

Conjugal loss and syndromal depression in a sample of elders aged 70 years or older.

OBJECTIVE: The goal of this study was to describe the association between conjugal loss and both syndromal depression and depressive symptoms in a prospective cohort study of people aged 70 years or older. METHOD: A measure of syndromal depression, the shortform Composite International Diagnostic Interview (CIDI), and a revised version of the Center for Epidemiologic Studies--Depression Scale (CES-D Scale) were administered to a group of 5,449 elders in a longitudinal cohort study. The authors compared the rates of syndromal depression (CIDI diagnosis) and depressive symptoms (six CES-D Scale symptoms) in married participants and those who lost spouses between the first and second waves of assessment. RESULTS: The rate of syndromal depression in the newly bereaved was nearly nine times as high as the rate for married individuals, and the rate of depressive symptoms was nearly four times as high. The percentage of the bereaved respondents who had scores above threshold on the revised CES-D Scale was higher for those interviewed up to 2 years after loss of a spouse than for married respondents. Age, sex, prior psychiatric history, and the expectedness of the death did not differ between depressed and nondepressed newly bereaved subjects. CONCLUSIONS: Recent bereavement is a significant risk factor for syndromal depression in the elderly. Some widows and widowers experienced high levels of depressive symptoms up to 2 years after the loss of their spouses. Neither demographic variables nor variables concerning the nature of the spouse's death predicted bereavement-related depression.     

Predictors of Depressive Symptomatology Among Lower Social Class Caregivers of Persons with Chronic Mental Illness

This study examined the predictors of depressive symptomatology among caregivers of persons with chronic mental illness. Data were collected through in-person interviews with family caregivers of 103 adults with chronic mental illness who were served by mental health case management agencies. The results indicated that insufficiency of overall social support was the most powerful predictor of caregiver depressive symptomatology. In addition, caregiver burden had a significant unique contribution to caregiver depressive symptomatology, with higher levels of burden associated with greater levels of caregiver depressive symptomatology. Higher levels of client behavioral problems and insufficient support from family members and mental health professionals related to the caregiving role were associated with higher levels of caregiver depressive symptomatology through their associations with care-giver burden. Caregiver race was not significantly related to caregiver burden or to caregiver depressive symptomatology after controlling for other variables. Over two-fifths of White caregivers and over one-quarter of Black caregivers were at risk for clinical depression. Implications for practice and research are discussed.     

Quality of life and burden in caregivers of youth with obsessive-compulsive disorder presenting for intensive treatment

BackgroundPediatric obsessive-compulsive disorder (OCD) is associated with deleterious familial effects; caregivers are often enmeshed in the disorder and can experience considerable burden and decreased quality of life (QoL). Consequently, this study examined burden and QoL in caregivers of youth with OCD enrolled in an intensive outpatient or partial hospitalization program.MethodThe relationships between caregiver QoL and burden and the following variables were investigated: OCD symptom severity, functioning (youth functional impairment, general family functioning), family (family accommodation, parental relationship satisfaction, positive aspects of caregiving), and comorbid psychopathology (caregiver anxiety and depressive symptoms, youth internalizing and externalizing behaviors). Seventy-two child and caregiver dyads completed clinician- and self-rated questionnaires.ResultsComponents of caregiver QoL correlated with caregiver-rated functional impairment, family accommodation, youth externalizing behaviors, and caregiver psychopathology. Aspects of caregiver burden correlated with child OCD symptom severity, functional impairment related to OCD, as well as caregiver and child comorbid psychopathology. Caregiver depressive symptoms predicted caregiver QoL, and caregiver depressive symptoms and child externalizing symptoms both predicted caregiver burden. Caregiver burden did not mediate the relationship between obsessive-compulsive symptom severity and caregiver QoL.ConclusionUltimately, elucidating factors associated with increased caregiver burden and poorer QoL is pertinent for identifying at-risk families and developing targeted interventions.     

Anticipatory grief in new family caregivers of persons with mild cognitive impairment and dementia

Anticipatory grief is the process of experiencing normal phases of bereavement in advance of the loss of a significant person. To date, anticipatory grief has been examined in family caregivers to individuals who have had Alzheimer disease (AD) an average of 3 to 6 years. Whether such grief is manifested early in the disease trajectory (at diagnosis) is unknown. Using a cross-sectional design, we examined differences in the nature and extent of anticipatory grief between family caregivers of persons with a new diagnosis of mild cognitive impairment (MCI, n=43) or AD (n=30). We also determined whether anticipatory grief levels were associated with caregiver demographics, caregiving burden, depressive symptoms, and marital quality. The mean anticipatory grief levels were high in the total sample, with AD caregivers endorsing significantly more anticipatory grief than MCI caregivers. In general, AD caregivers endorsed difficulty in functioning, whereas MCI caregivers focused on themes of "missing the person" they once knew. Being a female caregiver, reporting higher levels of objective caregiving burden, and higher depression levels each had independent, statistically significant relationships with anticipatory grief. Given these findings, family caregivers of individuals with mild cognitive deficits or a new AD diagnosis may benefit from interventions specifically addressing anticipatory grief.     

Sleep in spousally bereaved elders with subsyndromal depressive symptoms.

Spousal bereavement in late life frequently leads to major depression. However, many people suffer from "minor" depressive symptoms that entail considerable suffering even in the absence of syndromal major depression. We describe longitudinal electroencephalographic (EEG) sleep and clinical evaluations in 14 elderly, recently spousally bereaved subjects who were experiencing subsyndromal depressive symptoms. While subjects did not meet diagnostic criteria for syndromal major depression, they did have mildly elevated scores on the Hamilton Rating Scale for Depression (mean = 10.6, range = 8-16) at the time of initial sleep studies (T1), which were carried out, on average, 5.5 months after loss of the spouse. Entry into the study was limited to volunteers who did not have a personal history of major depression or psychiatric disorder. Twelve subjects underwent followup clinical and EEG sleep evaluations (T2), 9.9 months after spousal loss. Fifty percent continued to show depressive symptoms at 6-month followup. Test-retest comparisons of sleep and clinical measures were made with a group of sex- and age-matched control subjects who were neither bereaved nor depressed. EEG sleep measures did not significantly correlate with time from loss of spouse, severity of depressive symptoms, or subjective sleep quality. Analysis of variance with repeated measures detected a significant group X time interaction effect for delta sleep ratio (decreasing in controls but increasing in the bereaved).     

Gender difference and caregivers' burden in early-onset Alzheimer's disease

Background: Caregiver burden is the stress experienced as a result of caregiving. Despite the increasing number of Alzheimer's disease (AD) patients who are cared for at home, little has been published about the caregiver burden pertaining to caregivers of early‐onset AD patients. The objective of this study was to examine the difference between the genders with respect to the careburden of early‐onset AD caregivers. Methods: Twenty‐four patients with early‐onset AD and their caregivers participated in this study. Dementia severity, caregiver's burden, depressive mood and behavioral disturbance were measured and examined. Results: There was no significant difference between female and male caregivers in terms of careburden or depressive mood. However, when correlations were considered, female caregivers showed significant associations between careburden and the patient's age. Associations between the subscales of careburden were also shown for female caregivers. However. there was no significant correlation between the subscales of careburden and dementia severity and the number of behavioral problems for either female or male caregivers. Depression scores showed only correlations with the subscales of careburden for female caregivers. Conclusion: The present study examined the difference between the genders with respect to the care burden experienced by caregivers of early‐onset AD patients. The results reinforce those of previous studies in that female caregivers are more likely to experience careburden than male caregivers. The present study indicates the importance of mental health support for female caregivers.     

Self-efficacy for managing dementia may protect against burden and depression in Alzheimer's caregivers

Background: Self-efficacy is the belief that one can perform a specific task or behaviour and is a modifiable attribute which has been shown to influence health behaviours. Few studies have examined the relationship between self-efficacy for dementia-related tasks and symptoms of burden and depression in caregivers.

Methods: Eighty four patient/caregiver dyads with Alzheimer's disease were recruited through a memory clinic. Patient function, cognition and neuropsychiatric symptoms were assessed together with caregiver burden, personality, depressive symptoms, coping strategies and self-efficacy for completing tasks related to dementia care.

Results: 33% (28) of caregivers reported significant depressive symptoms (CES-D?≥?10). In multivariate analyses, caregiver burden was predicted by self-efficacy for symptom management, neuroticism, patient function and neuropsychiatric symptoms while caregiver depression was predicted by self-efficacy for symptom management, caregiver educational level, neuroticism, emotion-focused coping, dysfunctional coping and patient function. In patients with moderate to severe impairment (MMSE?≤?20), self-efficacy for symptom management behaved as a mediator between patient neuropsychiatric symptoms and symptoms of burden and depression in caregivers.

Conclusions: Further longitudinal investigation is warranted to determine if self-efficacy might be usefully considered a target in future interventional studies to alleviate symptoms of burden and depression in Alzheimer's caregivers.     

Persisting burden predicts depressive symptoms in dementia caregivers

Dementia caregivers often report feeling burdened by caretaking responsibilities. Caregiver burden is correlated with caregiver depression, but the interrelationship between burden and depression requires further investigation. This study hypothesized that persisting elevated burden results in subsequent depressive symptoms. Participants were 33 dementia caregivers divided into two groups based on their Zarit Burden Interview score. The outcome variable was the total score on the Geriatric Depression Scale after 12 months. Caregivers who had persisting high burden showed significantly worse depression scores after 12 months compared to those caregivers without persisting high burden. Regression analysis controlling for baseline depression also demonstrated burden as a significant predictor of subsequent depression. These data suggest that longitudinal burden may be predictive of higher depressive symptoms; therefore, reducing burden could decrease depressive symptoms in dementia caregivers.     

Subjective appraisal of Alzheimer's disease caregiving: the role of self-efficacy and depressive symptoms in the experience of burden

Most studies investigating correlates of Alzheimer's disease (AD) caregiver burden have focused on the role of objective factors as opposed to subjective factors. Although objective variables (e.g., caregiver age, patient dementia severity, functional status) have been shown to be significantly associated with burden, the correlations generally are modest and explain relatively little of the variability in caregiver outcomes. Moreover, many of these objective variables are not modifiable and are of limited use in the development of caregiver interventions. Thus, there continues to be a need to identify powerful and modifiable determinants of caregiver burden. This study examined the role of two subjective factors-self-efficacy and depressive symptoms-as predictors of AD caregiver burden. Based on a sample of 80 AD caregivers, hierarchical regression analyses revealed that self-efficacy and depressive symptoms each had a significant independent effect on the experience of burden even after accounting for objective factors. These findings suggest that caregiver interventions aimed to reduce burden may benefit from the incorporation of specific strategies to increase self-efficacy and decrease depressive symptoms.     

Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study.

OBJECTIVE: There are high rates of stress, distress, and psychological illness in family caregivers of people with dementia. Female caregivers and those caring for people with neuropsychiatric symptoms are particularly at risk. The authors report on the prevalence of anxiety and depression in a sample of family caregivers of people with Alzheimer disease (AD) and compare the characteristics of those who did or did not have those conditions. METHODS: A group of 153 people with AD and their caregivers were interviewed as part of a larger study of AD. RESULTS: In all, 23.5% of caregivers scored at or above caseness level for anxiety, and 10.5%, at levels for depression. Care-recipient (CR) activities of daily living (ADL) impairment, being a caregiver living with the CR, being a female caregiver, reporting a poorer quality of relationship with the CR, and caregivers reporting their health as being poor all predicted anxiety disorder. CR irritability, caregivers reporting poor health, and a poorer quality of relationship with the CR predicted depression. CONCLUSIONS: Clinicians should be aware of the high rates of anxiety as well as depressive symptoms in family caregivers of people with AD, especially in female caregivers. CRs and Caregivers' impaired physical health put them at risk for psychological morbidity and should be treated energetically. A poor-quality relationship between the caregiver and the CR predicts both caregiver depression and anxiety. Caregivers living with the CR are much more likely to be anxious than depressed.     

Measurement and correlates of family caregiver self-efficacy for managing dementia

Researchers in the aging field are paying increasing attention to the importance of perceived self-efficacy in understanding experiences and health-related outcomes of family caregivers. This paper details the strategy we used to measure family caregiver self-efficacy for managing dementia, and reports on observed associations between the resulting self-efficacy measures, caregiver depressive symptoms, and caregiver physical health symptoms. Family caregivers (n = 197) were interviewed after calling a local Alzheimer's Association chapter in the mid-western USA. Nine items inquiring about caregivers' certainty that they could carry out specific behaviors related to dementia care clustered into two distinct self-efficacy factors: symptom management self-efficacy (4 items) and community support service use self-efficacy (5 items). Internal consistency reliability for both factors was high (Cronbach's alpha = 0.77 and 0.78, respectively). Symptom management self-efficacy demonstrated a much stronger correlation with a published global caregiver competence measure than did service use self-efficacy (r = 0.49 and 0.27, respectively). In a multivariate regression model predicting caregiver depression symptoms, higher symptom management self-efficacy scores were associated with fewer depressive symptoms (beta = -0.17, p < 0.05). In a separate model, higher service use self-efficacy scores (beta = -0.20, p < 0.01) and higher symptom management self-efficacy scores (beta = -0.16, p < 0.05) were associated with fewer physical health symptoms. These new measures of dementia management self-efficacy hold promise for use in future studies.     

Predictors of complicated grief among dementia caregivers: a prospective study of bereavement.

OBJECTIVE: Most family caregivers adapt well to the death of their care recipient relative; however, a sizable minority continues to experience postdeath psychiatric morbidity. The purpose of this study was to better understand why some caregivers manifest clinical levels of complicated grief postdeath. This is the first study to prospectively assess predictors of complicated grief among family caregivers of patients with dementia who experience the death of their care recipient. METHOD: The sample of bereaved caregivers is drawn from a larger study of 1,222 family caregivers providing in-home care to their relative with dementia. In-home assessments of caregivers and patients were carried out at baseline and six-month intervals for a total of 18 months. This article is based on the 217 caregivers who experienced the death of their care recipient in the course of the study. Three logistic regression models are tested to identify pre- and postbereavement predictors of complicated grief, including sociodemographic factors, characteristics of the caregiving experience, including participation in a caregiver intervention, other psychiatric morbidities, and medication use. RESULTS: Twenty percent of dementia caregivers evidenced complicated grief along with high levels of depressive symptomatology postdeath. Controlling for sociodemographic factors, caregivers who had high levels of preloss depressive symptoms and burden, reported positive features of the caregiving experience, and were caring for a more cognitively impaired patient were more likely to report clinical levels of complicated grief postloss. In addition, caregivers who were enrolled in a psychosocial caregiver intervention designed to reduce depression and burden reported lower levels of complicated grief. CONCLUSION: This study identifies predictors of complicated grief for which interventions could be developed to not only ease caregiver distress, but also serve as preventive interventions for bereavement. Reducing the burden of active caregiving, treating depression before the death of the loved one and providing supportive psychosocial and skills training caregiver interventions can prevent the emergence of postdeath psychiatric morbidity.     

WHAT DEPRESSIVE SYMPTOMS ARE REPORTED IN ALZHEIMER'S PATIENTS?

Purpose. To ascertain the nature of depression-related symptoms in AD. Method. The Hamilton Rating Scale for Depression (HAM-D) was administered as a semi-structured interview to 30 consecutive Alzheimer's disease (AD) patients who also underwent independent psychiatric evaluation. The HAM-D was also administered with a caregiver as the informant. Results. There was no relationship between the number of symptoms reported by patients or caregivers and patients' level of cognitive impairment. Symptom reports by caregivers living in the same household did not differ significantly from symptom reports by caregivers living elsewhere. Caregivers rated AD patients as having significantly more depressive symptoms than did patients themselves. The items most frequently endorsed by caregivers were psychic anxiety (77%), suspiciousness (50%), low energy (50%) and depression (43%). The items most frequently endorsed by AD patients were weight loss (36%), psychic anxiety (33%) and somatic anxiety (33%). Depression was endorsed by 20% of patients. Caregiver-respondent HAM-D scores suggested clinically significant depression in 27% of cases, but AD patients' scores suggested clinically significant depression in only 7% of cases. No case of major depression was found on psychiatric examination. Conclusions. Depressive symptoms seemed more an executive function loss than of primary mood disturbance in that guilt, suicidal rumination and self-perceived loss of interest were uncommon, suggesting that simple environmental measures might be the most appropriate treatment of these symptoms.     

Gender differences in burden and depression among informal caregivers of demented elders in the community

BACKGROUND: Earlier studies have yielded inconsistent findings regarding gender differences with respect to burden and depression among informal community caregivers of dementia patients. OBJECTIVES: The aim of the study was to determine whether or not there were gender differences in the prevalence of burden and depression among informal caregivers of community-residing dementia patients. METHODS: Data from 259 female and 68 male caregivers who were part of the Canadian Study of Health and Aging were analyzed. Depressive symptoms were measured using the Center for Epidemiologic Studies--Depression Scale (CES-D). Burden was assessed using Zarit's Burden Interview. Associations between the outcome variables (depressive symtoms and burden) and the independent variable, gender, were examined using logistic regression. RESULTS: In multivariable analysis, female caregivers were found to have significantly higher odds than male caregivers of having a score of 33 or higher on Zarit's Burden Interview (OR=2.6; 95% CI 1.0, 6.7). The OR comparing women to men with respect to a high level of depressive symptoms (defined as a score of 16 or more on the CES-D) was not significant (OR=1.3; 95% CI 0.6, 2.9). Poor perceived caregivers health and more behavior disturbance in the patient were associated with significantly higher odds of high levels of caregiver burden and depression. CONCLUSIONS: Adequate assistance must be given to women caregivers to ensure that they are not strained beyond what is clinically healthy. In addition, interventions should target caregivers of behaviorally disturbed patients as well as caregivers who report poor physical health to reduce the negative psychological impact of caregiving.     

Caregiving burden and psychiatric morbidity in spouses of persons with mild cognitive impairment

BACKGROUND: While the deleterious psychosocial and mental health effects of dementia caregiving are firmly established, very little is known about the burdens or psychiatric outcomes of providing care to a spouse with less severe cognitive impairment, such as mild cognitive impairment (MCI). We characterized the nature and level of caregiver burden and psychiatric morbidity in spouses of persons diagnosed with MCI. METHODS: Interview assessments were completed on a cohort of 27 spouses of persons with a recent diagnosis of MCI. Patient medical records were reviewed to collect information regarding the MCI patient's medical history. RESULTS: Respondents endorsed elevated levels of both task-related responsibilities and subjective caregiver burden. Depression and anxiety symptom levels also showed some elevations. Measures of caregiver burden were significantly associated with depression and anxiety levels. In particular, even after controlling for demographic risk factors for distress, nursing task burden was correlated with elevated depressive symptoms, and greater lifestyle constraints were correlated with higher anxiety levels. CONCLUSIONS: Although caregiver burden and psychiatric morbidity levels were lower than those typically observed in family dementia caregiving samples, our findings suggest that MCI caregivers have already begun to experience distress in association with elevated caregiving burden. These individuals may be ideal targets for selective preventive interventions to maximize their psychological well-being as caregiving burdens related to their spouses' cognitive impairment increase.     

Use of mental health and primary care services by caregivers of patients with bipolar disorder: a preliminary study

OBJECTIVES: Caring for a relative with schizophrenia or dementia has been associated with reports of caregiver burden, symptoms of anxiety, depression, poor self-rated health, and elevated health service use; however, comparable data for caregivers of relatives with bipolar disorder are lacking. This study reports preliminary data on the health, psychological distress and health service use of caregivers of patients with bipolar disorder. It additionally evaluates the relationship of the level of burden caregivers report experiencing to their use of health services, controlling for level of psychological distress and health status. METHODS: Subjects were primary caregivers of 264 patients with Research Diagnostic Criteria-diagnosed bipolar disorder and their bipolar relatives. Caregiver mental health and primary care service use were assessed retrospectively for the 7-month period prior to inpatient or outpatient admission of the bipolar patient. Caregiver depression, anxiety, medical conditions and patient symptomatology were assessed as well. RESULTS: Hierarchical logistic regression analysis demonstrated that caregiver burden significantly increased the likelihood of mental health service use (OR = 13.53, p < 0.001) even after controlling for caregiver psychological distress and medical conditions, while anxiety and depression level, but not burden, significantly increased the likelihood of primary care service use, controlling for other variables (OR = 1.72, p = 0.02). CONCLUSIONS: Burdens experienced by family caregivers appear to increase use of health services, and presumably cost, and may be reduced by psychosocial intervention.     

Behavioral disorders and caregivers' reaction in Taiwanese patients with Alzheimer's disease

OBJECTIVES: To evaluate the applicability of the Chinese version of the Neuropsychiatric Inventory Scale (NPI), and to explore the neuropsychiatric manifestations of Taiwanese patients with Alzheimer's disease (AD) and caregiver distress. METHOD: The Mini-Mental State Examination (MMSE) was administered to 95 patients with AD, and their caregivers were interviewed with the NPI. To assess the test-retest reliability of the Chinese version of the NPI, 86 caregivers underwent a second NPI 3 weeks later. RESULTS: The Cronbach's alpha coefficient of the Chinese version of the NPI was .76. The test-retest reliabilities of frequency, severity, and caregiver burden scores were significantly correlated; overall correlations were .85 for frequency (p < .001), .82 for severity (p < .001), and .79 (p < .001) for distress. Factor analysis was carried out, and three groups, "mood and psychosis," "psychomotor regulation," and "social engagement," were found. Aberrant motor behavior was the most frequently recorded behavior; euphoria was the least. There was no significant correlation between the patient's MMSE and the caregiver distress score, except for aberrant motor activity (r = -.23, p = .03). The symptoms most frequently reported to be severely distressing to caregivers were aberrant motor activity, anxiety, agitation, and delusions. CONCLUSIONS: These results indicate that the NPI is a reliable tool to assess behavioral disturbance and caregiver distress in Taiwanese AD patients. These findings also confirm the high prevalence of psychopathology among AD patients and the marked distress produced by many of these behaviors.     

What explains differences between dementia patients' and their caregivers' ratings of patients' quality of life?

OBJECTIVE: The authors assessed the magnitude of discrepancy between patients' and caregivers' ratings of the patients' quality of life and sought to determine whether the discrepancies are associated with patient characteristics, caregiver characteristics, or the type of relationship between the patient and caregiver. METHODS: A sample of 91 patients with mild-to-moderately severe dementia and their primary family caregiver rated five domains of the patients' subjective quality of life. RESULTS: Agreement between patients and caregivers was low. Caregivers rated patients' quality of life lower than patients rated their own in all five domains. Discrepancies between patients' and caregivers' ratings were not associated with the patients' cognitive performance, level of functioning, nor caregivers' reports of aggressive, attention-seeking, or sexually inappropriate behaviors, nor whether the caregiver lived with or was married to the patient. However, discrepancies were associated with level of caregiver burden and the patients' report of depressive symptoms. Patients with depression reported low quality of life, which matched caregivers' low rating of patients' quality of life. Caregivers who reported higher levels of burden rated patients' quality of life lower than did patients in all five domains of quality of life. CONCLUSIONS: Discrepancies between dementia patients' and their caregivers' ratings of the patients' quality of life are associated with increased levels of caregiver burden, rather than lower levels of patients' functioning. The results of this study support the direct assessment of mild-to-moderate dementia patients about their subjective quality of life.