Factors emerging from the “Zarit Burden Interview” and predictive variables in a UK sample of caregivers for people with dementia

Smith, Kelly P.; George, Catriona; Ferreira, Nuno

doi:10.1017/s1041610218000315

Cited by 26 publications

(39 citation statements)

References 26 publications

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“…Compared to other published studies of the burden amongst FTD caregivers (Diehl-Schmid et al, 2013;Hsieh et al, 2016;Kaizik et al, 2017;Liu et al, 2017b;Mioshi et al, 2013;Uflacker et al, 2016), a major contribution of this study is that it provides a large sample size, with sufficient statistical power, to examine the predictors of the major factors of FTD caregiver burden: role strain, personal strain, and performance strain. Furthermore, this study advances beyond recently published papers on caregiver burden by focusing specifically on FTD caregivers versus simply mild cognitive impairment or dementia (Arthur et al, 2017;Sheikh et al, 2018;Smith et al, 2018). The specificity allows for an understanding of the unique perceptions of FTD caregivers compared to caregivers of other dementia types.…”

Section: Discussionmentioning

confidence: 95%

Perceived burden among caregivers of patients with frontotemporal degeneration in the United States

Besser

Galvin

2018

Int. Psychogeriatr.

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Background:Frontotemporal degeneration (FTD) dementia often begins before age 60 and predominantly presents as four subtypes with prominent features of language, behavior, cognition, and motor symptoms. The early onset and unique symptoms place a distinct burden on caregivers of individuals with FTD versus other dementia types, such as Alzheimer’s disease. This is the first known study to examine the domains of the FTD caregiver burden and the caregiver and patient characteristics associated with these domains.Methods:In 2017, 674 FTD caregivers in the United States (US) completed a web-based survey of caregiver and patient demographics, disease severity/symptoms, caregiver burden, and financial costs of caregiving. The major factors of caregiver burden (Zarit Burden Inventory) were determined using a principal axis factor analysis with varimax rotation. Multiple linear regression analyses examined caregiver and patient characteristics associated with overall burden and three major factors of burden: role strain, personal strain, and performance strain.Results:Increased neuropsychiatric symptoms was associated with overall caregiver burden and greater role, personal, and performance strain. Younger caregivers experienced greater overall burden and performance strain, female caregivers experienced increased role strain, and male caregivers experienced greater performance strain. Financial costs of caregiving and experiencing a caregiving crisis in the past year were associated with higher overall burden and role strain.Conclusions:This study suggests that the severity and sources of burden differ for caregivers of FTD patients versus patients with other dementia types. Differing predictors for each burden domain suggest targeted interventions to address the unique FTD caregiving challenges.

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Section: Discussionmentioning

confidence: 95%

Perceived burden among caregivers of patients with frontotemporal degeneration in the United States

Besser

Galvin

2018

Int. Psychogeriatr.

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“…We read with interest the study by Smith et al (2018) among 110 family caregivers of persons with dementia that affirmed the multidimensionality of burden as measured by the Zarit Burden Interview (ZBI) (Lau et al, 2015). Factor analysis identified three factors (53.45% of total variance), namely direct impact of caregiving, uncertainty over the future, and frustration/embarrassment.…”

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confidence: 99%

ZBI multidimensionality: The salience of worry about performance

Lau

Ali

Lim

et al. 2018

Int. Psychogeriatr.

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“…None of the concerns we identified strictly reflect objective vs. subjective concerns (Hughes et al, 2014) , but some do reflect stress and demand (Savundranayagam et al, 2005) . Many recent efforts within (Ankri et al, 2005;Oh & Kim, 2018;Smith et al, 2018;Springate & Tremont, 2014) and beyond (Al-Rawashdeh et al, 2016;Kitko et al, 2020;Maguire & Maguire, 2020) Finally, two questions stood out: "Are you afraid of what the future holds for your relative?" and "Do you feel your relative is dependent on you?"…”

Section: Discussionmentioning

confidence: 99%

“…(Oh & Kim, 2018) identified "social restrictions", "self-criticism", and "anger and frustration" in a Korean sample of family caregivers for amyotrophic lateral sclerosis (ALS) patients. (Smith et al, 2018) identified "impact of caregiving", "frustration/embarrassment", and "uncertainty over the future" in a UK (Scotland) sample of spousal or adult children caregivers across various diagnoses. Beyond neurodegenerative disorders, (Al-Rawashdeh et al, 2016) identified four types of burdens in caregivers of patients with heart failure.…”

Section: Introductionmentioning

confidence: 99%

Caregiving concerns and clinical characteristics across neurodegenerative and cerebrovascular disorders in the Ontario Neurodegenerative Disease Research Initiative

Beaton¹,

Pm²,

Jb³

et al. 2020

Preprint

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Introduction: Informal caregivers for persons living with neurodegenerative disorders experience various types of stress and strain. Few studies have investigated the nature of caregiving concerns (“burdens”) and factors that contribute to those concerns, especially across multiple neurodegenerative and cerebrovascular disorders. Methods: The Ontario Neurodegenerative Disease Research Initiative (ONDRI) recruited participants with five neurodegenerative and cerebrovascular disorders (N = 504). Participants had study partners (family or friends) who provided information about themselves (e.g., the Zarit’s Burden Interview), as well as information about the clinical participants (e.g., activities of daily living). We used Correspondence Analysis to identify types of caregiving concerns in the Zarit’s, then identified relationships between those concerns and demographic, clinical, and cognitive measures.Results: We identified three components from the ZBI. The first was “overall burden” and was (1) strongly related to increases in neuropsychiatric symptoms and decreases in activities of daily living, (2) only moderately related to cognition, and (3) showed little-to-no differences between disorders. The second and third components revealed four types of caregiving concerns: current care of patient, future care of patient, personal concerns of study partner and social concerns of study partner. Discussion: We showed that caregiving concerns are multidimensional and individual experiences and emphasize the importance of support for the management of ADLs and neuropsychiatric symptoms, as well as individualized needs for caregiving assessment, education, training, and support strategies.

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Factors emerging from the “Zarit Burden Interview” and predictive variables in a UK sample of caregivers for people with dementia

Cited by 26 publications

References 26 publications

Perceived burden among caregivers of patients with frontotemporal degeneration in the United States

Perceived burden among caregivers of patients with frontotemporal degeneration in the United States

ZBI multidimensionality: The salience of worry about performance

Caregiving concerns and clinical characteristics across neurodegenerative and cerebrovascular disorders in the Ontario Neurodegenerative Disease Research Initiative

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