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

Huang, Wen‐Chien; Chang, Ming-Hong; Wang, Wenfu; Jhang, Kai-Ming

doi:10.3389/fpsyg.2021.798315

Cited by 8 publications

(3 citation statements)

References 42 publications

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“…In our study, we have observed that the personal characteristics of carers are as important as dementia symptoms related to reported burden. However, we could not affirm this due to the fact that there are not enough longitudinal studies and few comparing different types of dementia‐related diseases 36 . Furthermore, we could not compare the effects of the COVID‐19 pandemic on the evolution of dementia symptoms nor the effects on the burden report.…”

Section: Discussionmentioning

confidence: 93%

“…However, we could not affirm this due to the fact that there are not enough longitudinal studies and few comparing different types of dementiarelated diseases. 36 Furthermore, we could not compare the effects of the COVID-19 pandemic on the evolution of dementia symptoms nor the effects on the burden report. Nowadays, some initial studies report a significant influence on people with dementia and their family carers too.…”

Section: A 24-month Course Of Burdenmentioning

confidence: 99%

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Longitudinal effect of dementia carers' sense of coherence on burden

Conde‐Sala

Calvó-Perxas

Cullell-Juncà

et al. 2022

Int J Geriat Psychiatry

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Background: A sense of coherence (SOC) could help us better understand why there are individuals who cope better than others in similar situations. The study aimed to assess the effect of SOC on the course of burden reports in relatives of persons with dementia. Methods:This was a prospective cohort study of 156 dementia carers. The SOC was assessed by the Orientation to Life Questionnaire (OLQ-13), burden by Burden Interview, and personal and contextual characteristics were collected via ad hoc questions. The main dementia symptoms, including functional difficulties (Disability Assessment for Dementia), neuropsychiatric symptoms (Neuropsychiatric Inventory), and cognitive impairment (Mini-Mental State Examination), were also assessed. A general linear model was adjusted to determine the effect of SOC and other covariates on burden throughout the follow-up. Burden differences between baseline and 12 and 24 months were analysed, and the baseline OLQ-13 score was grouped by quartiles. Results:The global burden reported increased after 24 months (F = 9.98; df = 2; p < 0.001), but not equally for all carers; daughters reported the greatest increase. SOC, functional disability, and neuropsychiatric disorders showed a significant effect on burden, but time did not. Carers with higher SOC at baseline tend to remain with lower burden levels, whereas carers with low SOC reported higher burden at each visit. Conclusions:This study reports evidence of the effect of SOC on burden at baseline, 12 and 24 months of follow-up. Burden scores differ by carers' SOC; those with higher SOC showed lower burden levels, whereas the low-SOC group reported a greater burden at each visit.

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Section: Discussionmentioning

confidence: 93%

Section: A 24-month Course Of Burdenmentioning

confidence: 99%

Longitudinal effect of dementia carers' sense of coherence on burden

Conde‐Sala

Calvó-Perxas

Cullell-Juncà

et al. 2022

Int J Geriat Psychiatry

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“…[9][10][11] The duration of caring and the patient's functional status, including behavioural problems and cognitive capacity, are the most significant predictors of carer burden. 11 Other predictors of dementia carer burden include declining physical function, increasing behavioural impairment and mood disorders of the person with dementia, 8,12 dementia type, 13 and carers' social functioning and coping traits. 14 Education and provision of information is critical for improving the management of dementia and health outcomes of persons with dementia and their carers.…”

Section: Introductionmentioning

confidence: 99%

Preferred type, timing and format of dementia information: A cross‐sectional survey of carers of people living with dementia

Berghout,

Waller,

Lachapelle

et al. 2023

Australas J Ageing

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ObjectivesTo clarify the unmet information needs of carers of people living with dementia, including the stage of their care journey at which topics become relevant, and the preferred format and mode of delivery of information.MethodsA cross‐sectional survey of carers of people living with dementia was conducted between April 2022 and October 2022. Carers were recruited through public and private geriatric hospital and community clinics, aged care providers, an online research register and community dementia services. Consenting carers completed a survey assessing sociodemographic characteristics, preferred type and timing of information about dementia, accessing services, changes in behaviour/personality, changes in physical/emotional health, managing own health/well‐being and preferred information format and mode of delivery.ResultsA total of 163 carers returned a survey (20% response rate). Most carers (75–98%) reported wanting information across a range of topics. Carers preferred general dementia information at diagnosis, information about accessing services at or within the first year of diagnosis, and information on managing symptoms as they emerged. Carers were most interested in receiving information in‐person face‐to‐face (60% very interested), written information (51% very interested) or via face‐to‐face group information sessions (42% very interested).ConclusionsCarers of people living with dementia expressed a desire for information on a wide range of topics, which changed as the dementia of the person they cared for progressed. Information needs to be made available in a variety of formats to cater for differing ways in which it is consumed.

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