Quality of Life in People with Young-Onset Alzheimer’s Dementia and Frontotemporal Dementia

Hvidsten, Lara; Engedal, Knut; Selbæk, Geir; Wyller, Torgeir Bruun; Bruvik, Frøydis Kristine; Kersten, Hege

doi:10.1159/000487263

Cited by 19 publications

(21 citation statements)

References 74 publications

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“…AD compared with FTD). [22][23][24] In addition, earlier research using the QoL-AD and RAND-36 identified that depression negatively influenced health-related QoL in patients. In caregivers, unmet needs of both patients and caregivers negatively influenced caregiver health-related QoL.…”

Section: Quality Of Life In Yodmentioning

confidence: 99%

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

Dixit

Spreadbury

Orlando³

et al. 2020

J Geriatr Psychiatry Neurol

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Background: Quality of life (QoL) has seldom been investigated or explicitly measured in young-onset dementia (YoD). The aims of this study were (1) to investigate and compare QoL self- and proxy reports in a sample of YoD patients and caregivers using different conceptual assessments of QoL and (2) to examine the relationship between caregiver QoL and both burden and mental health. Methods: There were 52 participants (26 YoD patient–caregiver dyads). The design was cross-sectional and part of a larger longitudinal prospective cohort study of YoD patients and caregivers. Primary measures included generic QoL (World Health Organization Quality of Life–short version [WHOQOL-BREF]), dementia-specific QoL (Quality of Life in Alzheimer’s Disease Scale [QoL-AD]), health-related QoL (EQ5D), and a single-item QoL measure. Secondary measures included caregiver burden (Zarit Burden Index), mental health (Hospital Anxiety and Depression Scale), and dementia severity (Clinical Dementia Rating). Results: Patient QoL self-reports were higher than caregiver proxy reports on the QoL-AD ( P = .001). Patient QoL self-reports for the WHOQOL-BREF ( P < .01) and single-item QoL ( P < .05) measure were significantly higher than caregiver self-reports. Dementia severity had no relationship with QoL self-reports. Caregiver burden, anxiety, and depression were negatively correlated with QoL when measured using a generic and single-item measure, but not with the health-related measure. Discussion: Patients and caregivers show a disparity in QoL reports, with patients tending to report higher QoL. Caregiver burden, anxiety, and depression should be areas targeted for interventions when supporting caregivers.

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Section: Quality Of Life In Yodmentioning

confidence: 99%

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

Dixit

Spreadbury

Orlando³

et al. 2020

J Geriatr Psychiatry Neurol

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“…In line with the clinical features, both the EQ-5D utility scores and the VAS scores of the sCJD patients are extremely low. In Table 3, we have summarized some published data calculated by EQ-5D-3L instrument with the values sets from UK, Japan and Thailand, respectively [19][20][21][22][23][24][25][26] . If we use the data with the value set from UK, the general health utility value of Chinese sCJD patients is the lowest (median -0.043), much lower than that of AD, PD, and even lower than that of stroke on the rst day.…”

Section: Discussionmentioning

confidence: 99%

Analysis on Health-related Quality of Life of 180 Chinese Patients with Sporadic Creutzfeldt-Jakob Disease

Zhang¹,

Gao

Wang³

et al. 2020

Preprint

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Aims Sporadic Creutzfeldt-Jakob disease (sCJD) heavily affects the patient’s motor, cognitive, and psychological functions with 100% fatality rate. Yet, there are few studies focusing on the impact of sCJD on the health-related quality of life (HRQoL) of the patients with validated instrument. We examined physical and mental conditions of those sCJD patients in China for the first time. Methods With EQ-5D-3L instrument, a telephone-based cross-sectional study was conducted in order to obtain health statuses of 180 probable Chinese sCJD cases diagnosed in the National Center for CJD surveillance from January 2017 to July 2018. Besides, a visual analogue score (VAS) was performed to evaluate the health status of the sCJD patients from the family members and relatives who nursing the patients. Results Nearly all of 180 sCJD patients showed the apparent problems in the demission of mobility, usual activities and self-care. More than 1/3 of patients (38.33%) recalled the moderate and severe problems in the demission of pain/uncomfortable. 47.78% of them had the problems in the demission of anxiety/depression. The health utility of sCJD patients was low, with the median of 0.206. Meanwhile, the EQ-VAS score of those sCJD patients was also extremely low, with the median of 0. Conclusion Compared with the published data of several other diseases, the quality of life of Chinese sCJD patients was extremely poor as demonstrated by the results of the generic EQ-5D-3L. More social attentions need to be paid to reduce the healthy and economic burdens for sCJD patients and their families.

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“…The QOL of the persons with dementia was described in a previous study [37]. The only inclusion criteria for the family carers were face-to-face contact with the person with dementia at least once weekly and written informed consent to participation.…”

Section: Methodsmentioning

confidence: 99%

Quality of life of family carers of persons with young-onset dementia: A Nordic two-year observational multicenter study

et al. 2019

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Objectives To identify factors associated with QOL in carers of persons with young-onset Alzheimer’s (AD) and frontotemporal dementia (FTD) and explore development in QOL over a two-year period. Methods Eighty-eight family carers of community-dwelling people with young-onset AD (n = 50) and FTD (n = 38) recruited from Nordic memory clinics. Carer QOL was assessed using the Quality of Life–Alzheimer’s Disease questionnaire. Carer burden was assessed by the Relatives’ Stress scale and depressive symptoms by the Montgomery-Åsberg Depression Rating Scale. Factors associated with QOL in YOD and development in QOL over time were explored with growth mixture model trajectories and mixed model analyses. Results We identified two carer groups of persons with YOD following trajectories with better (n = 53) versus poorer (n = 30) QOL. Carers who reported more burden at baseline had greater odds of belonging to the poorer QOL group (OR 1.1 (1.0–1.2), p = 0.004). Analyses of the development in QOL showed a significant decline in QOL–AD scores among the AD-carers from baseline to two-year follow-up (p = 0.044), while the score remained stable among the FTD-carers. The FTD-carer group had significantly higher mean QOL–AD scores at one- and two-year follow-up (p = 0.022 and 0.045, respectively). However, the difference between the two groups regarding time trend was non-significant. Poorer QOL was associated with increased carer burden (p = 0.01), more depressive symptoms (p = 0.024), and being male carer (p = 0.038). Conclusion Higher care burden, more depressive symptoms, and being a male carer was associated with poorer QOL in family carers for persons with YOD. Carers of persons with AD may experience greater challenges in preserving QOL compared to carers of persons with FTD.

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Quality of Life in People with Young-Onset Alzheimer’s Dementia and Frontotemporal Dementia

Cited by 19 publications

References 74 publications

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

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

Analysis on Health-related Quality of Life of 180 Chinese Patients with Sporadic Creutzfeldt-Jakob Disease

Quality of life of family carers of persons with young-onset dementia: A Nordic two-year observational multicenter study

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