Worse Caregiver Research Articles

Dementia caregiver burden and its toll on caregiver health

AbstractBackgroundIn 2019, more than 16 million U.S. family members and friends provided 18.6 billion hours of unpaid care to people with cognitive impairment. Mexican Americans (MAs) make up two thirds of the Latinx population and research shows that MA caregivers report more caregiver burden compared to non‐Hispanic Whites (NHW). The purpose of this study is to examine the underlying mechanisms influencing caregiver burden on the physical and mental health of caregivers by ethnicity and familism.MethodWe recruited adults 65 and older with cognitive impairment (Montreal Cognitive Assessment score>25), and their caregivers living in Nueces County, Texas. Caregiver burden was measured using the Zarit Burden Interview. Familism was measured using a 18‐item scale. Caregiver’s mental and physical health were derived from the 36‐Item Short Form Survey. Covariates included caregiver’s age, sex, ethnicity, education and care recipient’s cognitive function and physical impairment, including the ability to eat, dress or go to the toilet without assistance. We used weighted path analysis to test effects of ethnicity, familism and caregiver burden on caregiver’s mental and physical health. Covariates with p‐values>0.15 were excluded to attain a parsimonious reduced model.ResultWe included data from 516 caregivers and those they cared for. MA caregivers were younger, female, had less education and scored higher on the familism scale compared to NHW (Table 1). Figure 1 includes results from our reduced weighted path model which presented a good model fit. Increased caregiver burden was associated with worse mental (B = ‐0.53;p<0.001) and physical health (B = ‐0.14;p = 0.003). Familism had indirect positive effects on mental and physical health outcomes mediated by lowering caregiver burden (B = ‐0.15;p = 0.001). Being a MA caregiver was associated with a stronger level of familism (B = 0.49;p<0.001). Findings indicate that MA caregivers have better physical and mental health due to reduced caregiver burden because of stronger family relations.ConclusionResults show that increased caregiver burden is associated with worse caregiver’s mental and physical health. However, among MA, familism can be a protective factor against caregiver burden. Findings can contribute to early identification, intervention and coordination of services to help reduce caregiver burden, particularly in the growing MA informal caregiver population.

Caregiver Burden Is Associated With the Physical Function of Individuals on Long-Term Oxygen Therapy.

The influence of physical function of individuals on long-term oxygen therapy (LTOT) on caregiver burden is underexplored. This study investigated the association of caregiver burden with physical function of individuals on LTOT and the association between caregiver's burden and quality of life. This was a cross-sectional study. Informal caregivers were assessed for burden using the Caregiver Burden Inventory (CBI), the European Quality of Life 5 Dimension questionnaire index (EQ-5D index) and its Visual Analog Scale (EQ-VAS). Physical function of subjects on LTOT was assessed by dyspnea, activities of daily living (ADLs), and mobility. Univariate and multivariate linear regression models were explored. Fifty-four caregivers (54.7 ± 16.1 y, 74.1% female) were included. CBI total score was correlated with subject's dyspnea (r = 0.369, P = .006) and ADLs (r = 0.300, P = .03). In the multivariate regression models, subject's physical function limitation due to dyspnea explained 26.4% of the CBI total score variance (P = .005). In the CBI dimension analysis, the time-dependence caregiver burden was correlated with subject's dyspnea (r = 0.335, P = .01), ADLs (r = 0.436, P = .001), and mobility (r = -0.415, P = .002). CBI developmental and physical caregiver burden were correlated with dyspnea (r = 0.309, P = .02; r = 0.363, P = .007) and ADLs (r = 0.274, P = .045; r = 0.299, P = .03). Emotional caregiver burden was correlated with dyspnea (r = 0.333, P = .01). Higher CBI total score was correlated with worse quality of life on EQ-5D index (rs= -0.374, P = .005) and EQ-VAS (rs= -0.494, P = .001) in caregivers. Increased caregiver burden was associated with higher physical limitation due to dyspnea and dependence in ADLs of individuals on LTOT. The increased burden was associated with a worse caregiver's quality of life.

Interplay of disability, caregiver impact, and out-of-pocket expenditures in Duchenne muscular dystrophy: a cohort study

BackgroundProviding caregiving support to people with Duchenne muscular dystrophy (DMD) is challenging, beginning in early childhood, and continuing through the progression of multidimensional disability. This study addressed the interplay between caregiver impact, out-of-pocket expenditures, and DMD disability. To examine these interconnections, we investigated the association between caregiver impact domains and out-of-pocket expenditures; and the presence of clusters in caregivers on the basis of DMD-related disability domains in the patients for whom they provided caregiving support.MethodsThis web-based study recruited 566 DMD caregivers (140 males, 426 females; mean age 41.6 years, SD 8.8, range 21–72), examining caregiver impact using the DMD Caregiver Impact Measure, PROMIS-derived parent-proxy (PPP) measures of their child’s disability, and items tapping out-of-pocket expenditures related to home and vehicle accommodations and assistive devices. T-tests compared caregiver impact scores by out-of-pocket expenditures incurred. Latent Profile Analyses (LPA) were conducted to generate impact profiles related to child’s disability as reported by caregiver proxies.ResultsHigher out-of-pocket expenditures were generally associated with worse impact on the subscales, but several expenditures (e.g., kitchen, bathroom, scooter) were associated with lower impact. LPA indicated that the four-group solution provided the best relative fit and yielded good profile separation (entropy = 0.91). Caregivers with lowest impact reported the highest mobility, cognitive, and upper extremity functioning of their DMD care recipients, whereas the highest caregiver impact was driven by their care recipient’s negative affect and fatigue. The upper-middle impact group showed great variability in proxy-disability domains, whereas the lower-middle group had similar levels of disability across domains. Profiles were represented across all child ages.ConclusionOut-of-pocket expenditures were often associated with worse caregiver impact, but some associated with milder impact (i.e., bathroom or kitchen modification, investing in a ceiling lift or medical scooter). While their son’s level of disability and age were related to impact on the DMD caregiver, the domains giving rise to highest caregiver impact were not the most visible aspects of disability, such as mobility, but rather negative affect and fatigue. Other contextual attributes are likely implicated, and will be addressed in the companion paper.

Does the 5\u20132-1 criteria identify patients with advanced Parkinson's disease? Real-world screening accuracy and burden of 5\u20132-1-positive patients in 7 countries

BackgroundThe burden of Parkinson’s disease (PD) worsens with disease progression. However, the lack of objective and uniform disease classification challenges our understanding of the incremental burden in patients with advanced Parkinson’s disease (APD) and suboptimal medication control. The 5–2-1 criteria was proposed by clinical consensus to identify patients with advancing PD. Our objective was to evaluate the screening accuracy and incremental clinical burden, healthcare resource utilization (HCRU), and humanistic burden in PD patients meeting the 5–2-1 screening criteria.MethodsData were drawn from the Adelphi Parkinson’s Disease Specific Program (DSP™), a multi-country point-in-time survey (2017–2020). People with PD who were naive to device-aided therapy and on oral PD therapy were included. Patients meeting the 5–2-1 screening criteria had one or more of the three clinical indicators of APD: (i) ≥5 doses of oral levodopa/day, OR (ii) “off” symptoms for ≥2 h of waking day, OR (iii) ≥1 h of troublesome dyskinesia. Clinician assessment of PD stage was used as the reference in this study. Clinical screening accuracy of the 5–2-1 criteria was assessed using area under the curve and multivariable logistic regression models. Incremental clinical, HCRU, and humanistic burden were assessed by known-group comparisons between 5 and 2-1-positive and negative patients.ResultsFrom the analytic sample (n = 4714), 33% of patients met the 5–2-1 screening criteria. Among physician-classified APD patients, 78.6% were 5–2-1 positive. Concordance between clinician judgment and 5–2-1 screening criteria was > 75%. 5–2-1-positive patients were nearly 7-times more likely to be classified as APD by physician judgment. Compared with the 5–2-1-negative group, 5–2-1-positive patients had significantly higher clinical, HCRU, and humanistic burden across all measures. In particular, 5–2-1-positive patients had 3.8-times more falls, 3.6-times higher annual hospitalization rate, and 3.4-times greater dissatisfaction with PD treatment. 5–2-1-positive patients also had significantly lower quality of life and worse caregiver burden.Conclusions5–2-1 criteria demonstrated potential as a screening tool for identifying people with APD with considerable clinical, humanistic, and HCRU burden. The 5–2-1 screening criteria is an objective and reliable tool that may aid the timely identification and treatment optimization of patients inadequately controlled on oral PD medications.

Longitudinal Effects of Cultural and Psychosocial Factors on Biomarkers of Cardiovascular Risk in Caregivers

Dysfunctional thoughts about caregiving (DTAC) and familism (i.e. familistic obligation) were associated with worse caregiver emotional and cardiovascular health in cross-sectional studies. The aim of this study was to longitudinally examine the effects of familism and DTAC on cardiovascular health, considering caregiver kinship adjusting for well-established predictors of cardiovascular health. Study participants were 80 family dementia caregivers. Individual interviews and collection of blood samples were conducted in three yearly assessments. Linear mixed (random effects) regression analysis was performed to examine longitudinal associations of familism, DTAC, and circulating levels of cytokine interleukin (IL)-6, a cytokine and biomarker of cardiovascular disease risk (CVD). Caregiver age, gender, alcohol consumption, body mass index (BMI), hours caring, frequency and reaction of behavioral problems and caregivers’ transitions were used as covariates. Results showed that increases in DTAC, in familism and higher caregiver age were independently and significantly associated with higher levels of IL-6 over time in the group of spousal caregivers. No significant effects were found for any of the other covariates in spousal caregivers. In contrast, increases in BMI and in frequency of behavioral problems were significantly associated with increases in IL-6 over time in adult child caregivers. No significant effects were found for any of the rest of predictors in adult child caregivers. Findings suggest that high level of obligation familism and DTAC may a profile of increased vulnerability for CVD in spousal caregivers. In contrast, problem behaviors of the care recipient may characterize adult child caregivers in terms of an increased CVD risk.

Abstract WP239: Caregiver Burden Among Informal Caregivers of Stroke Survivors

Background and Purpose: Caregiver burden is commonly encountered in chronic disease management. Caregiver burden among informal caregivers of stroke survivors has potential to impact patient outcomes. We sought to assess the degree of caregiver burden and related factors among informal caregivers of patients followed in our Stroke Transitions Education and Prevention (STEP) clinic. Methods: We surveyed informal caregivers accompanying stroke patients to our STEP clinic visits within 2 years of ischemic or hemorrhagic stroke occurrence. Assessments included a caregiver demographic questionnaire, Zarit caregiver burden scale, patient health questionnaire-9 (PHQ-9, depression), Barthel index (BI -stroke survivor). Zarit score was dichotomized as no/minimal burden vs mild/moderate/severe burden. Univariate and multivariate analysis were conducted using logistic regression. Results: Among 71 surveys obtained, 69% of informal caregivers were women, despite a similar gender distribution of stroke survivors (54% women). While 49% of caregivers reported some degree of caregiver burden, 34% were classified as moderate-severe or severe. Caregiver burden was strongly associated with stroke survivor physical disability; odds of moderate or worse caregiver burden was 4.5 times higher (95% CI 1.52, 16.1) with BI < 75 compared to = 75. Additionally, odds of moderate-severe depression, as defined by PHQ-9 > 9, were 10 times higher (95% CI 2.06, 48.9). Conclusions: High levels of caregiver burden exist among informal caregivers of stroke survivors, and burden is associated with stroke survivor physical disability. Caregiver burden was associated with significantly greater odds of depression. Findings suggest the need for studies focused on characterization of informal caregiver needs and interventions to address the challenges they face.

Perception scores of siblings and parents of children with hypoplastic left heart syndrome.

Siblings of children with chronic medical conditions endorse a lower quality of life compared to age-matched peers. Caregiver and sibling-self report of adjustment are often discordant. Congenital heart disease significantly affects family life. To date, there have been no studies addressing the functioning of siblings of children with hypoplastic left heart syndrome, one of the most severe forms of congenital heart disease. The goal of this study was to assess the impact of hypoplastic left heart syndrome on sibling's quality of life as well as the caregiver's perception of this effect. Cross-sectional study using a web-based survey distributed via various listservs targeted towards families of children with hypoplastic left heart syndrome. Employed the Sibling Perception Questionnaire, designed to assess sibling and caregiver perceptions of adjustment to chronic illness. A Negative Adjustment Composite Score was calculated for each respondent, with higher values representing more negative adjustment. Thirty-five caregivers responded. Majority of caregivers were female (74%), white (86%) and college educated (54%). Thirty-two siblings participated, ranging in age from 7 to 30 years of age (12.5 ± 6.3). Most children with hypoplastic left heart syndrome (73%) had undergone the third stage of palliation. Forty-two caregiver-sibling pairs were examined. Caregiver Negative Adjustment Composite Scores were significantly higher than sibling scores, with caregivers reporting more adjustment problems (2.4 ± 0.4) than siblings (2.3 ± 0.3, P < .05). Sibling age was correlated with worse caregiver and sibling scores (r 0.35, P < .05). Caregivers of children with hypoplastic left heart syndrome perceive their siblings as struggling more than the children self-report. Siblings tend to report worse adjustment as they get older. These data suggest that programs should include support for the entire family through all ages to optimize quality of life.

Mild cognitive dysfunction of caregivers and its association with care recipients' end-of-life plans and preferences.

Little is known about the association between cognitive dysfunction among informal caregivers and patients’ plans and preferences for patients’ end of life care. We report on the frequency of cognitive dysfunction among both patients and caregivers and examine associations between caregivers’ cognitive screening scores and end of life plans and preferences of patients with advanced cancer. The current sample was derived from a National Cancer Institute- and National Institute of Mental Health-funded study of patients with distant metastasis who had disease progression on at least first-line chemotherapy, and their informal caregivers (n = 550 pairs). The Pfeiffer Short Portable Mental Status, a validated cognitive screen, was administered to patients and caregivers. Patients were interviewed about their end of life plans and preferences. Logistic regression models regressed patients’ advance care planning and treatment preferences on caregivers’ cognitive screen scores. Patients’ cognitive screen scores were included as covariates. Most caregivers (55%) were spouses. Almost 30% of patients scored worse on the cognitive screen than their caregivers and 12% of caregivers scored worse than the patients. For each additional error that caregivers made on the cognitive screen, patients were more likely (AOR = 1.59, p = 0.002) to report that they preferred that everything possible be done to keep them alive and were less likely (AOR = 0.75, p = 0.04) to have a living will or a health care proxy/durable power of attorney. Worse caregiver cognitive screening scores were associated with higher likelihood of patients’ reporting that they wanted everything done to save their lives and a lower likelihood of having a living will or other type of advanced care plan. Future studies should confirm these findings in other populations and determine the mechanisms that may underlie the identified relationships.

The impact of extended half-life versus conventional factor product on hemophilia caregiver burden

IntroductionExtended half-life factor products have reduced annualized bleeding rates in hemophilia patients. The impact of extended half-life versus conventional factor products on hemophilia caregiver burden has not been investigated. This study aimed to evaluate caregiver burden in extended half-life versus conventional factor products for hemophilia A and B.MethodsThis cross-sectional web-based study of caregivers of people with hemophilia A or B was recruited from a panel research company and by word of mouth. Participants completed the Hemophilia Caregiver Impact measure, the PedsQL Family Impact Module (PedsQL), and the Work Productivity and Activity Impairment Questionnaire (WPAI). We also collected demographic, insurance coverage, and medical information related to the hemophilia patient(s). Burden differences were assessed using linear regression and matched cohort analyses.ResultsThe sample (n = 448) included 49 people who were caring for people on extended half-life factor products. Worse caregiver burden was associated with more infusions per week and more bleeds in the past 6 months. Regression analyses suggested that caring for someone who is on a extended half-life factor product is associated with lower emotional impact (β = − 0.11, p < 0.05, Adjusted R2 = 0.06), and shows a trend association with lower practical impact (β = − 0.09, p < 0.10, Adjusted R2 = 0.05). The matched cohort analysis also revealed that people on extended half-life factor product had lower Emotional Impact and Practical Impact scores (t = − 2.95 and − 2.94, respectively, p < 0.05 in both cases). No differences were detected on the PedsQL or the WPAI.ConclusionThe reduced required frequency of factor product infusions of extended half-life factor products appears to reduce the emotional distress and practical burden of caregiving. Future work should evaluate the longitudinal impact.

Intensity of end-of life-care in children with cancer: A population-based study.

10574 Background: There is growing evidence that adult oncology patients who know they are dying choose less intense care. Further, high intensity care is associated with worse caregiver outcomes. Little is known about pediatric oncology end-of-life care intensity. Methods: Using the California Office of Statewide Health Planning and Development administrative database linked to death certificates, we performed a retrospective population based analysis of cancer patients aged 0-21 who died between 2000 and 2011. The frequency of previously defined end-of-life intensity markers (hospital death, intense medical interventions, IV chemotherapy, and gastrostomy and tracheostomy tube placement) were calculated and multivariable logistic regression was used to determine clinical and sociodemographic factors associated with &gt; 2 intensity markers (as above), intense medical intervention (cardiopulmonary resuscitation, intubation, ICU admission, or hemodialysis), and hospital death. Results: The 3,732 pediatric cancer decedents were 34% non-Hispanic whites and 45% Hispanic; 41% had hematologic malignancies and 59% solid tumors. The most prevalent intensity markers included: hospital death (63%) and ICU admission (20%). 65% had &gt; 1 intensity marker, 23% &gt; 2, and 22% &gt; 1 intense medical intervention. There was a bimodal association between age and intensity: the youngest patients (age &lt; 5) and adolescent patients (age 15-21) were more likely to receive intense care: &lt; 5y (intense medical intervention: OR = 1.42; 95% CI, 1.1-1.9; hospital death: OR = 1.72; 95% CI, 1.4-2.2; &gt; 2 markers: OR = 1.37, 95% CI 1.1-1.8); 15-21y (intense medical: OR = 1.48; 95% CI, 1.2-1.9; hospital death: OR = 1.39; 95% CI, 1.1-1.7; &gt; 2 markers: OR = 1.35, 1.1-1.7) (references: 5-9y). Other factors associated with intensity included, hematologic malignancies, minority status, and death between 2008 and 2011 vs. &lt; 2008. Conclusions: Nearly two-thirds of the pediatric cancer decedents had ≥1 marker of intense care and disparities exist. Patients &lt; 5 and adolescents were more likely to receive intense end-of-life care. Further research needs to determine if these rates and variation are consistent with patient goals and factors associated with goal concurrent care.

Spirituality, religiosity, spiritual pain, and quality of life among Latin American patients with advanced cancer (LAAdCa): A multicenter study.

246 Background: The associations between spirituality (S), religiosity (R), spiritual pain (SP), symptom, coping and quality of life (QOL) have not been well characterized in LAAdCa. The main purpose of this Multicenter study was to analyze these associations. Methods: We interviewed 325 LAAdCa at a Palliative Care clinic in Chile, Guatemala, and USA. They completed FICA (S/R assessment), ESAS–FS (including SP), PSWQ (Worry), B-COPE and B-R-COPE (coping), FACIT-sp-ex (Spiritual Well-being). Results: Median age 58 (range: 19-85), 60% women, 62% Catholic, 30% Christian not Catholics, and 2% with no religion. 97% of LAAdCa considered themselves spiritual and 89% religious, median 7(IQR: 5-10) and 7(5-9) respectively. Median Importance of S/R in life (score 0 = none, 10 = very important) was 10 (IQR:8-10). The frequency and associations among the importance of S/R and different items were: helps them to cope with their illness (98%, r = 0.73; p &lt; 0.0001), is a source of strength and comfort (99%, r = 0.79; p &lt; 0.0001), and has a positive effect in physical symptoms (81%, r = 0.40; p &lt; 0.0001), emotional symptoms (84%, r = 0.42, p &lt; 0.0001), and helps to their caregivers to cope with pts' illness (100%, r = 0.66, p &lt; 0.0001). 60% of LAAdCa reported that their S/R needs had not been supported by the medical team. 24% had received pastoral attention inside the hospital. 162/311 (52%) of LAAdCa reported spiritual pain (median 6; IQR: 5-8). Spiritual pain significantly correlated with worse pain (p = 0.02), fatigue (p = 0.0002), depression (p &lt; 0.0001), anxiety (p &lt; 0.0001), Financial distress (p &lt; 0.0001), worry (p &lt; 0.001), behavioral disengagement (p = 0.01), FACIT-sp-Ex (p = 0.0002), negative religious coping strategies (p &lt; 0.0001), caregiver’s SP (p = 0.02), caregiver’s depression (p &lt; 0.0001), caregiver’s anxiety (p = 0.0007), and worse caregiver’s QOL (p = 0.001). Conclusions: Majority of LAAdCa considered themselves spiritual and religious. S/R help to deal with their illness and correlates with less emotional distress, positive coping strategies and QOL. Still more than 50% LAAdCa reported SP and their S/R needs are not totally supported by the medical team. More research is needed.

Abstract 12062: Patient and Caregiver Heart Failure Symptom Response Behaviors in 364 Patient-Caregiver Dyads

Introduction: Recognition and response to symptoms of heart failure (HF) is critical to reducing the risk of hospitalization and mortality. Although many patients have support from caregivers, little is known about caregivers’ contributions to HF symptom response behaviors. We hypothesized that patient-, caregiver-, and dyad-level factors would be associated with better symptom response behaviors. Methods: This was a secondary analysis of data on 364 Italian HF patient-caregiver dyads. HF symptom response behaviors were measured using patient and caregiver versions of the Self-Care of Heart Failure Index (0-100; higher = better). Health status (SF-12) and relationship quality (single item) were collected from patients and caregivers. Patient cognition and comorbidities were measured using the MMSE and Charlson Index. Caregiver social support was measured with the Carers of Older People in Europe Index. Hospitalizations were abstracted from the medical record. Multilevel modeling was used for all analyses. Results: Patients were older (age 76.3±10.8 years), predominantly male (57.3%) and most had NYHA Class II/III HF (72.2%). Caregivers were younger (age 57.7±14.6 years), and most were female (51.7%) and adult child (53.6%) or spousal (34.0%) caregivers. Symptom response behaviors were poor in patients (49.1±19.6) and caregivers (54.7±18.3). Patient gender (male β=-4.60±1.92, p&lt;0.05), better cognition (β=0.40±0.19, p&lt;0.05), worse caregiver health (β=-0.43±0.14, p&lt;0.01), and higher relationship quality (β=2.28±0.83, p&lt;0.01) were significant determinants of better patient symptom response. Nonspousal relationship (β=6.62±1.96, p&lt;0.001), fewer patient comorbidities (β=-2.32±0.79, p&lt;0.01), better patient health (β=0.41±0.12, p=0.001), more hospitalizations (β=3.06±1.41, p&lt;0.05), higher relationship quality (β=2.12±0.84, p&lt;0.01), and higher caregiver social support (β=1.09±0.43, p&lt;0.05) were significant determinants of better caregiver symptom response. Conclusions: Combinations of individual and relationship factors were significant determinants of patient and caregiver responses to HF symptoms. Assessment of patient and caregiver as a dyad may be useful in evaluating risk for poor management of HF symptoms.

Predictors of peer victimization among Peruvian adolescents in the young lives cohort.

Bully-victimization is a widespread public health issue with significant negative effects on both social function and psychological well-being. Existing research in Peru shows high prevalence of bullying. However, researchers have yet to fully understand the phenomenon of victimization in developing regions. The purpose of this study was to characterize victimization patterns over time, along with the predictors of victimization from a cohort of Peruvian adolescents enrolled in the young lives (YL) study. This study examined data from YL, a longitudinal study of poverty, health, and development, which examined data from the older cohort of children in Peru across three rounds (ages 8, 12, and 15 years). The sample consisted of 714 children from 74 communities that represent 20 districts in Peru. After adjusting for urban/rural setting, there remained a significantly lower wealth index for children who were bullied at ages 8 and 12 years. Exploratory analysis showed that although those in the lowest quartile of body mass index (BMI) were significantly more likely to be bullied at age 8 years, this association waned over time. A worse caregiver assessment of child's health compared with others was associated with a significantly greater risk of bully-victimization. At age 8 years, caregiver education was significantly lower among those bullied compared with those who were not bullied. This study showed several factors as the predictors of victimization in the early years, including being male and having low BMI, low socioeconomic status, and low parental/caregiver education. Further longitudinal studies should be conducted to determine the extent to which these predictors vary in significance over time.

PPN3: THE IMPACT OF DEMENTIA ON CAREGIVER QUALITY OF LIFE

BACKGROUND: The prevalence of Alzheimer's disease (AD) and vascular dementia (VD) is expected to rise substantially in the coming decades. As well, the impact of these conditions on caregiver burden and quality of life (QOL) is also expected to increase. OBJECTIVES: To (1) determine how the characteristics of patients and their caregivers affects caregiver's QOL, and (2) identify subsets of caregivers disproportionately affected by their patient's disease. METHODS: Data were collected cross-sectionally at baseline on 912 pairs of AD/VD patients and their primary caregivers as part of a multinational prospective longitudinal clinical trial. Patient and caregiver demographics, patient CDR and DAD scores were collected, as were caregiver EuroQol (EQ-5D) scores and time spent on caregiving activities. Univariate and multivariate analyses were conducted to determine patient and caregiver characteristics that were particularly associated with low caregiver QOL. RESULTS: Patient severity as measured by CDR score was moderately related to caregiver EuroQol score (p < .05). Specifically, caregiver EuroQol scores were .84, .78, .76, and .74 for questionable, mild, moderate, and severe dementia (on the CDR), respectively. In a main-effects only regression model, a 4-point and a 7-point reduction in caregiver's EuroQol score was associated with the caregiver being a women and being a spouse/partner of the patient, respectively. When an interaction term between these two variables was introduced into the regression, the main effects of caregiver gender and being a spouse/partner of the patient became insignificant. However, the interaction term, being a woman spouse caring for a patient, was associated with a significant 12-point reduction in EuroQol score. CONCLUSIONS: Worse caregiver QOL is associated with more severe patient disease stage and with being a woman caring for a demented spouse. Interventions should thus be planned with special consideration given this potentially more vulnerable set of caregivers.