Quality of Life Assessments in Individuals With Young-Onset Dementia and Their Caregivers

Dixit, Divyansh; Spreadbury, John; Orlando, Rosanna; Hayward, Elaine; Kipps, Christopher

doi:10.1177/0891988720933348

Cited by 12 publications

(10 citation statements)

References 47 publications

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“…This study aimed to better understand the prevalence of carer burden in people with YOD and the carer and patient factors that predict it. We found almost half of the carers experienced high burden as measured by ZBI, comparable to previous findings internationally 7,10 . In contrast to an earlier study between 2011 and 2014 in a neighbouring state, the mean burden (ZBI) score was significantly higher 5 ( N = 85, mean = 12.3, SD = 8.0, unpaired t‐test p < 0.001).…”

Section: Discussionsupporting

confidence: 80%

“…We found almost half of the carers experienced high burden as measured by ZBI, comparable to previous findings internationally. 7,10 In contrast to an earlier study between 2011 and 2014 in a neighbouring state, the mean burden (ZBI) score was significantly higher 5 (N = 85, mean = 12.3, SD = 8.0, unpaired t-test p < 0.001). In addition, over a third of the carers felt depressed, anxious, or stressed.…”

Section: Discussionmentioning

confidence: 59%

“…9 Of the limited research about the prevalence of burden and psychological strain in carers of YOD, cross-sectional studies conducted at outpatient cognitive clinics in Singapore and England found 52.6% and 58.3% carers experiencing high burden respectively. 7,10 An Australian study based in New South Wales reported the mean Zarit Burden Interview score was 12.3 (cut-off for high burden being a score of 17 or greater) but did not comment on the prevalence. 5 With regards to psychological strain, another Australian study reported 58% of carers felt depressed.…”

Section: Introductionmentioning

confidence: 99%

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Carer burden and psychological distress in young‐onset dementia: An Australian perspective

Kang

Farrand

Walterfang

et al. 2022

Int J Geriat Psychiatry

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Objectives: Carer burden in dementia is associated with poor outcomes, including early nursing home placement for people with dementia and psychological distress for their carers. Carers of people with young-onset dementia (YOD) are particularly vulnerable to carer burden. Yet they are often overlooked by clinicians as dementia services are generally designed for older people. We sought to estimate the rate of burden and psychological distress in carers of YOD at a state-wide tertiary service based in Australia. Methods: We conducted a cross-sectional study examining 71 dyads from a Neuropsychiatry service. We collected patient demographic and clinical data including the Neuropsychiatry Unit Cognitive Assessment tool (NUCOG) and Mini-Mental State Examination (MMSE). Carer data, such as demographics and psychological distress, were obtained using Depression Anxiety Stress Scale 21 (DASS-21).Carer burden was rated using the Zarit Burden Inventory-short version (ZBI).Results: Higher carer burden, measured using ZBI, was associated with longer duration of dementia and greater severity of overall cognitive impairment. Carers who felt burdened reported higher levels of stress, depression, and anxiety measured using DASS-21. Multiple linear regression analysis found carer burden was independently predicted by duration of dementia, total cognition score and carers experiencing psychological stress.Discussion: We found that patient variables of dementia duration and cognitive impairment and carer variable of carer stress to be associated with carer burden.Poor executive function was associated with carer stress. Early identification and management of carer burden and psychological distress is important for outcomes.Ideally, this should be provided by a specialist YOD service. K E Y W O R D Scarer burden, carer psychological distress, carer wellbeing, early-onset dementia, young-onset dementiaThis is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

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Section: Discussionsupporting

confidence: 80%

Section: Discussionmentioning

confidence: 59%

Section: Introductionmentioning

confidence: 99%

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Carer burden and psychological distress in young‐onset dementia: An Australian perspective

Kang

Farrand

Walterfang

et al. 2022

Int J Geriat Psychiatry

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“…Measuring QoL with a single item has proven to be psychometrically sound to provide a global view of an individual’s QoL which refers to the overall QoL [ 27 , 29 ]. The single-item scale of overall QoL has been widely used in empirical studies [ 30 , 31 ]. Similar to previous studies, the CLHLS adopted a single item to measure overall QoL, which asked the participants to report their feeling about overall life quality with a Likert scale: “very good (1)”, “good (2)”, “so so (3)”, “bad (4)”, “very bad (5)”.…”

Section: Methodsmentioning

confidence: 99%

Classifying and characterizing the development of self-reported overall quality of life among the Chinese elderly: a twelve-year longitudinal study

et al. 2022

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Background To promote healthy aging, the information about the development of quality of life (QoL) is of great importance. However, the explorations of the heterogeneity in the change of QoL under the Chinese context were limited. This study aimed to identify potential different development patterns of QoL and the influential factors using a longitudinal, nationally representative sample of the Chinese elderly. Methods We adopted a five-wave longitudinal dataset from the Chinese Longitudinal Healthy Longevity Survey (CLHLS), and a total of 1645 elderly were obtained. The sample had a mean age of 72.7 years (SD = 6.64) and was 47.2% male. Overall QoL was measured through self-report during the longitudinal process. We utilized the conditional growth mixture model (GMM) with time-invariant covariates (TICs) to explore various development patterns and associated factors. Results Three distinct trajectories of self-reported overall QoL were identified: the High-level Steady Group (17.08%), the Mid-level Steady Group (63.10%), and the Low-level Growth Group (19.82%). Results also indicated that several factors predicted distinct trajectories of self-reported overall QoL. Those elderly who received enough financial resources, had adequate nutrition, did not exhibit any disability, engaged in leisure activities, and did less physical labor or housework at the baseline were more likely to report a higher level of overall QoL over time. Conclusions There existed three development patterns of self-reported overall QoL in elders, and the findings provided valuable implications for the maintenance and improvement of QoL among the Chinese elderly. Future studies could examine the influence of other confounding factors.

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“…1 These patients are of a generation that plays an important role in society, and the economic and emotional burden on them and their families is significant. 2 Frontotemporal dementia (FTD) is the second most common young-onset dementia that occurs in patients under the age of 65 years after Alzheimer disease (AD) and accounts for about 10% of all dementia. 3 Although it is common in young-onset dementia, public awareness of the disease is lower than AD.…”

Section: Introductionmentioning

confidence: 99%

Risk factors of frontotemporal dementia compared with Alzheimer disease: Single psychiatric hospital–based research in Japan

Okoshi,

Shinagawa,

Takasaki

et al. 2023

Geriatrics Gerontology Int

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AimThe objective of this study was to reveal risk factors for incident of frontotemporal dementia (FTD) compared with Alzheimer disease (AD) in Japan.MethodFifty consecutive subjects diagnosed with FTD according to the Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM‐5) under 75 years old were included retrospectively. As a control group, 48 subjects who were diagnosed with AD according to the DSM‐5 and matched by age, sex, educational history, and Mini‐Mental State Examination were also included. In order to examine the distinctive risk factors of FTD, we compared the relationship between symptomatologic features, Clinical Dementia Rating, clinical factors, and sociopsychological factors in the two groups.ResultPatients with FTD were more likely than patients with AD to have meticulous premorbid personality and less likely to have a history of diabetes than patients with AD. Although the regression analysis was not significant, a history of psychiatric disorders tends to affect the incidence of FTD.ConclusionsThese findings regarding the risk of FTD are expected to lead to early diagnosis and care of FTD. Geriatr Gerontol Int 2023; ••: ••–••.

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Quality of Life Assessments in Individuals With Young-Onset Dementia and Their Caregivers

Cited by 12 publications

References 47 publications

Carer burden and psychological distress in young‐onset dementia: An Australian perspective

Carer burden and psychological distress in young‐onset dementia: An Australian perspective

Classifying and characterizing the development of self-reported overall quality of life among the Chinese elderly: a twelve-year longitudinal study

Risk factors of frontotemporal dementia compared with Alzheimer disease: Single psychiatric hospital–based research in Japan

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