A Comparison of Caregiver Burden for Different Types of Dementia: An 18-Month Retrospective Cohort Study

BackgroundThis study aimed to elucidate the influence of dementia etiologies on the degree of caregiver burden and determine which factors predict a high caregiving burden.MethodsThis 18-month retrospective cohort study enrolled 630 patients and their caregivers from the Dementia Center of Changhua Christian Hospital. The care team performed face-to-face interviews every 6 months, for 18 months from when a diagnosis of dementia was made. The primary outcome was the change in Zarit Burden Interview (ZBI) scores. Generalized estimating equations were used for the longitudinal data analysis.ResultsParticipants with Lewy body disease (LBD) had a significantly higher caregiving burden compared with those with Alzheimer's disease (AD) (β = 3.83 ± 1.47, Wald = 6.79, p = 0.009) after adjusting for patient and caregiver features. Caregivers of mixed-type dementia and frontotemporal dementia (FTD) experienced a greater burden than caregivers of AD, at 6- and 18-month follow-up. Patients with more severe dementia, neuropsychiatric symptoms, being cared for by more than two caregivers, or utilizing social resources were associated with higher ZBI scores; the depressive mood of caregiver also predicted higher ZBI scores.ConclusionThis longitudinal study demonstrated that caregiver burden was influenced by the underlying dementia etiology of patients. The dementia care team should provide personalized education and transfer patients and caregivers to appropriate resources, especially for high-risk populations.

The Association Between Parents’ Physical Function and Adult Children’s Caregiving Burden

Using data from 544 older parents-adult children Chinese American dyads, this study aims to understand the association between older parents’ physical function and their adult children’s perceived caregiving burden. Parents’ physical function was assessed by the Katz Index of Activities of Daily Living (ADL) and the Lawton Instrumental ADL (IADL), with higher scores indicating more functional limitations. Adult children’s caregiving burden was assessed in five dimensions, including time dependence, developmental, physical, social, and emotion burden. Logistic regression was used to examine the association. More ADL limitations were associated with a higher likelihood of developmental burden (OR:1.14 (1.06-1.23)) and physical burden (OR:1.14 (1.06-1.23)) burden. More IADL limitations was associated with a higher likelihood of time dependence burden (OR:1.08 (1.03-1.12)), developmental burden (OR:1.06 (1.03-1.09)), and physical burden (OR:1.08 (1.04-1.12)). Parents’ physical function was not related to children’s social and emotional burdens. Practice and research implications will be discussed.

Communication Difficulties and their Association with Caregiving Burdens in Aphasic Dementia

Primary progressive aphasia (PPA) is a clinical dementia syndrome for which there is no effective disease-modifying treatment. Impairments in language are the primary and persistent symptoms, and severely limit participation in everyday activities and family conversations. Despite this, there are no published studies examining the objective relationship between conversation difficulties and caregiving burden in PPA. We tested the hypothesis that the severity of care partner perceived conversation difficulties predicts caregiving burden using the Perception of Conversation Difficulty-Dementia Alzheimer’s Type and the Montgomery Borgatta Caregiving Burden Scale. The analysis included baseline data from 78 care partners (62% female) enrolled in the Communication BridgeTM-2 randomized control clinical trial of a speech-language intervention for PPA. Care partners had a mean age of 64.5 years (SD=10.76) and a mean relationship duration with the PPA participant of 38.6 years (SD=15.29). Eighty-six percent were spouses, 5% were adult children, and the remaining 9% were friends or siblings. Higher ratings of conversation difficulties were associated with increased caregiving burden for both objective burden (p < 0.001) and subjective stress burden (p < 0.001). The relationship between conversation difficulties and objective burden was mediated by dependence in activities of daily living and care partner depression, whereas the relationship with subjective stress burden was mediated by depression only. This is the first large scale study of care partner reported conversation difficulties and caregiving burden in PPA. The finding that conversation difficulties have a direct relationship with caregiving burden is an important consideration for interventions and outcome measurement in PPA.

Different Experiences of Adult Child and Spousal Caregivers with Family Conflict

Previous research indicates that different types of caregivers report distinct levels of family conflict (Dieker et al., 2019). However, as half (52%) of the participants in the previous study did not report family conflict, the purpose of this study was to examine the relationships among types of caregivers, family conflict, and caregiver burden in those who experience family conflict. Participants (N = 277; aged 19 to 87; M = 52.96) comprised of 197 adult child and 80 spousal caregivers. They completed the Caregiver Reaction Scale (O’Malley & Qualls, 2017) to assess different aspects of the caregiving experience. Hierarchical regressions (block 1: demographics, block 2: family conflict) were computed to predict caregiving burden. For spousal caregivers, the final model explained 2.2% of the variance in caregiving burden, F(7, 69) = 0.22, p = .98. None of the variables were significant. Additionally, family conflict did not uniquely influence caregiving burden beyond demographics, Fchange(2, 69) = 0.03, p = .97. For adult child caregivers, the set of predictors accounted for 20.5% of the variance in caregiving burden, F(7, 183) = 6.75, p < .001. Having more family beliefs and support conflict predicted greater caregiving burden (ps < .01). Family conflict scores also significantly explicated caregiver burden beyond demographics, Fchange(2, 183) = 17.60, p < .001. Results suggest that family conflict is a stronger driver of caregiver burden for adult child than spousal caregivers. Findings imply the need for clinicians to target appropriate interventions for adult child caregivers to reduce caregiver burden.

Validity of the Friedrich Short Form of the Questionnaire on Resources and Stress in Parents of Individuals with Autism Spectrum Disorder

There is insufficient knowledge about the psychometric properties of the Friedrich short form of the Questionnaire on Resources and Stress (QRS-F) used to measure the caregiving burden of caregivers of individuals with autism spectrum disorder (ASD). The present study, therefore, aimed to confirm the validity of the QRS-F. The data selected using the systematic sampling method were analyzed to verify the factor structure of the QRS-F on parents of individuals with ASD. Exploratory and confirmatory factor analyses were employed to confirm the validity and the factor structure of the scale. The Pearson correlation coefficient was calculated to verify the relation with other measures. The original factor model was not appropriate to assess the caregiving burden on parents of individuals with ASD because the models did not show adequate fit indices. The evaluation of results based on a total score was explored, which demonstrated the expected association between depression severity and caregiving time. Overall, this study supports the use of the QRS-F for measuring the caregiving burden of parents of individuals with ASD by comparing the total score with other related variables.

Exploratory and Confirmatory Factor Analysis of the Burden Scale for Family Caregivers-Short Form

Caregiver burden describes the physical, psychological, social, and financial demands of providing care to others. Caregiver burden has been investigated in general, and off-time caregiving often specific to chronic, recurring conditions. Despite the substantial research attention to caregiving burden, there have been few studies aimed establishing the psychometric evaluation of measurement tools used to measure the construct ( Pendergrass et al., 2018 ). Accurate measurement of caregiving burden is essential for studying the myriad effects on caregivers’ mental, physical, financial, and relational health. To begin to fill this gap, we conducted an exploratory factor analysis and a confirmatory factor analysis of the Burden Scale for Family Caregivers ( Pendergrass et al., 2018 ) in two distinct samples. Results of an exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) indicated a one factor solution. Implications for these findings on the study of caregiver burden are included.

Development of the Caregiving Burden Scale for Family Caregivers of Children with Cancer

Due to the burden of caregiving, family caregivers of children with cancer suffer from physical and psychosocial health problems. The aim of this study was to develop a Caregiving Burden Scale for Family Caregivers of Children with Cancer (CBSFC-CC) and to assess its psychometric properties. A methodological, descriptive study design was conducted. The study sample consisted of 217 family caregivers caring for children with cancer between the ages of 0 and 18 years. The item pool of the scale was created using the Delphi Technique. The Cronbach’s alpha coefficient for the overall scale was 0.93. The item-total score correlations ranged from 0.424 to 0.645. The exploratory factor analysis showed that the scale explained 68.34% of the total variance. The confirmatory factor analysis also showed that the factor loadings of the scale ranged from 0.46 to 0.96. NNFI, CFI, and IFI were found to be > 0.90, and RMSEA was found to be < 0.09. The CBSFC-CC was found to be a good multidimensional instrument for evaluating the burden on family caregivers of pediatric cancer patients. It can be used in clinical practice and research. This tool can be considered to tailor interventions aimed at improving caregiver outcomes.

Caregiving Burden among Informal Caregivers of Cancer Patients in Lagos, Nigeria

Purpose: The coping mechanisms adopted by cancer caregivers especially in developing countries of the world is given little attention. The aim of this study was to assess the caregiving burden and coping mechanisms among caregivers of cancer patients attending a tertiary hospital in Lagos, Nigeria.Methods: This was a cross-sectional descriptive study. An interviewer-administered questionnaire, Zarit Burden Interview (ZBI) tool, Katz index instrument of activity, Lawton Brody tool and Brief-Coping Orientations to Problems Experienced (COPE) scale were used to collect data from 385 informal caregiver-patient dyads. The data was analyzed using the Epi Info version 7.Results: Of the 385 caregivers in the study, 162 (42.1%) were males and 223 (57.9%) were females. Almost half (47.3%) of the caregivers had severe burden and the mean ZBI score was 39.1 ± 12.5. Adult children caregivers (56.3%) of cancer patients reported the highest proportion of severe burden among the patients’ relatives. All the respondents who had been caregivers for over a period of 12 months and those who spend at least 12 hours on caregiving role daily experienced severe burden. Almost half (46.3%) of caregivers who received no support from other people in caring for the patient reported severe burden.Conclusion: Older caregivers experienced higher caregiving burden than their younger counterparts. Duration of caregiving was associated with level of caregiving burden experienced. Social support groups and health professional need to assist caregivers reduce the burden of caregiving to chronically ill patients in sub-Saharan Africa.