Quality of Life in Advanced Dementia with Late Onset, Young Onset, and Very Young Onset

Background: Advanced stages of dementia are characterized by severe cognitive and physical impairment. It has not yet been investigated whether persons with young onset dementia (YOD) and late onset dementia (LOD) differ in advanced disease stages. Objectives: To compare quality of life (QoL) between persons with advanced YOD and LOD; to explore the determinants of QoL; to investigate whether YOD and LOD differ with regard to symptoms and care. Methods: The study was performed in the context of EPYLOGE (IssuEs in Palliative care for persons in advanced and terminal stages of YOD and LOD in Germany). Persons with advanced dementia (PWAD) were assessed and caregivers were interviewed. QoL was measured with the proxy rating Quality of Life in Late Stage Dementia (QUALID) scale. Results: 93 persons with YOD and 98 with LOD were included. No significant differences in QoL were detected. Determinants of QoL were similar in YOD and LOD. Behavioral and psychological symptoms of dementia (BPSD), suffering and other distressing symptoms were associated with a lower QoL. In YOD but not in LOD antipsychotic treatment was associated with low QoL. The group of persons who were younger than 65 years at the time of the study visit experienced significantly more distressing symptoms than older PWAD. Conclusion: Overall, persons with advanced YOD do not appear to be disadvantaged compared to old and oldest PWAD. Special attention, however, must be paid to the group of the very young persons who seem to be particularly vulnerable.

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

Dementia and Geriatric Cognitive Disorders ◽

10.1159/000487263 ◽

2018 ◽

Vol 45 (1-2) ◽

pp. 91-104 ◽

Cited By ~ 11

Author(s):

Lara Hvidsten ◽

Knut Engedal ◽

Geir Selbæk ◽

Torgeir Bruun Wyller ◽

Frøydis Bruvik ◽

...

Keyword(s):

Quality Of Life ◽

Late Onset ◽

Neuropsychiatric Symptoms ◽

The Elderly ◽

Community Dwelling ◽

Cross Sectional ◽

Young Onset ◽

Proxy Version ◽

Late Onset Dementia

Aims: The aims of this study were to compare quality of life (QOL) in people with young-onset Alzheimer’s (AD) and frontotemporal (FTD) dementia, explore variables associated with QOL, and compare QOL in young-onset dementia (YOD) and late-onset dementia (LOD). Methods: Cross-sectional data from a Nordic multicenter study of 50 community-dwelling participants with AD and 38 with FTD were included. A comparison group consisted of 100 people with LOD. QOL was measured using self-reported Euro-QOL 5-Dimension and the proxy version of Quality of Life in Alzheimer’s Disease (QOL-AD) questionnaire. Neuropsychiatric symptoms and needs were assessed using the Cornell Scale for Depression in Dementia (CSDD), Neuropsychiatric Inventory (NPI), and Camberwell Assessment of Needs in the Elderly. Multiple linear regression and multilevel modeling was used to determine variables associated with QOL. Results: We found no differences between the two YOD groups in QOL. The variables associated with QOL were scores on the CSDD, NPI, and unmet needs. The proxy QOL-AD score in YOD was significantly higher compared to LOD (median 36.0 [IQR 10.0] vs. 33.0 [IQR 9.0]). Conclusion: The QOL in Nordic people with YOD was better compared to people with LOD. Our results show depressive symptoms to be associated with QOL irrespective of age and diagnosis.

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Quality of life of family carers of persons with young-onset compared to late-onset dementia

Aging & Mental Health ◽

10.1080/13607863.2019.1617245 ◽

2019 ◽

Vol 24 (9) ◽

pp. 1394-1401 ◽

Cited By ~ 2

Author(s):

Lara Hvidsten ◽

Knut Engedal ◽

Geir Selbaek ◽

Torgeir Bruun Wyller ◽

Jūratė Šaltytė Benth ◽

...

Keyword(s):

Quality Of Life ◽

Late Onset ◽

Family Carers ◽

Young Onset ◽

Late Onset Dementia

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Does health‐related quality of life in Asian informal caregivers differ between early‐onset dementia and late‐onset dementia?

Psychogeriatrics ◽

10.1111/psyg.12556 ◽

2020 ◽

Vol 20 (5) ◽

pp. 608-619

Author(s):

Vivian W. Wang ◽

Nagaendran Kandiah ◽

Xuling Lin ◽

Hwee‐Lin Wee

Keyword(s):

Quality Of Life ◽

Early Onset ◽

Late Onset ◽

Informal Caregivers ◽

Health Related Quality ◽

Early Onset Dementia ◽

Related Quality ◽

Health Related ◽

Late Onset Dementia

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327 - The Course and Predictors of Quality of Life in Nursing Home Residents with Young-onset Dementia

International Psychogeriatrics ◽

10.1017/s1041610220002276 ◽

2020 ◽

Vol 32 (S1) ◽

pp. 85-86

Author(s):

Lihui Pu ◽

Christian Bakker ◽

Britt Appelhof ◽

Jeannette C.L. Van Duinen-van den Ijssel ◽

Sandra A. Zwijsen ◽

...

Keyword(s):

Quality Of Life ◽

Drug Use ◽

Nursing Homes ◽

Positive Affect ◽

Neuropsychiatric Symptoms ◽

Significant Decline ◽

Advanced Dementia ◽

Young Onset ◽

Young Onset Dementia

Background:People with young-onset dementia (YOD) living in nursing homes may experience poor quality of life (QoL) due to advanced dementia, high prevalence of neuropsychiatric symptoms and psychotropic drug use. However, the course of QoL in institutionalized people with YOD and factors that predict this course are unclear. This knowledge could help health professionals identify appropriate interventions to improve QoL in YOD.Objective:To explore the course of QoL in institutionalized people with YOD and resident-related predictors of that course.Methods:Secondary analyses were conducted with longitudinal data from the Behavior and Evolution in Young-ONset Dementia (BEYOND)-II study. A total of 278 people with YOD were recruited from 13 YOD special care units in the Netherlands. QoL was measured by the proxy assessment of Quality of Life in Dementia (QUALIDEM) questionnaire at four assessments over 18 months. Independent variables included age, gender, dementia subtype, length of stay, dementia severity, neuropsychiatric symptoms and psychotropic drug use at baseline. Multilevel modeling adjusted for correlation within nursing homes and residents was used to determine the course and predictors of QoL.Results:The total QUALIDEM score (range: 0–111) decreased over 18 months with a statistically significant decline of 0.73 points per six months. A significant increase of QoL over time was seen in the subscales “Care relationship”, “Positive self-image”, and “Feeling at home”. However, a significant decline was observed in the subscales “Positive affect”, “Social relations”, and “Something to do”. Residents’ course of QoL was positively associated with the baseline scores of the QoL, age and longer duration of stay; however, being male, having advanced dementia, Alzheimer’s disease and high rates of neuropsychiatric symptoms at baseline were negatively associated with the course of QoLConclusion:Longitudinal changes in QoL in residents with YOD were small over 18 months and QUALIDEM subscales showed multidirectional changes. The largest QoL decline in the subscale “Positive affect” suggests that interventions should be targeted to improve positive emotions, in particular for male residents with neuropsychiatric symptoms and advanced dementia.

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Young- and Late-Onset Dementia: A Comparative Study of Quality of Life, Burden, and Depressive Symptoms in Caregivers

Journal of Geriatric Psychiatry and Neurology ◽

10.1177/0891988720933355 ◽

2020 ◽

pp. 089198872093335

Author(s):

Nathália R. S. Kimura ◽

José Pedro Simões ◽

Raquel Luiza Santos ◽

Maria Alice Tourinho Baptista ◽

Maria da Glória Portugal ◽

...

Keyword(s):

Quality Of Life ◽

Depressive Symptoms ◽

Late Onset ◽

Linear Regression Analysis ◽

Anxiety Symptoms ◽

Care Recipient ◽

Convenience Sample ◽

Significant Difference ◽

Late Onset Dementia

Objective: To compare the quality of life, burden, and depressive symptoms of caregivers of individuals with young-onset dementia (YOD) and late-onset dementia (LOD). Methods: Using a cross-sectional design, a convenience sample of 110 dyads of individuals with dementia and their caregivers, all living in the community, was included. The care recipients completed assessments about cognition, quality of life, and awareness of disease. Caregivers’ quality of life, resilience, depressive and anxiety symptoms, hopelessness, and burden of care were assessed. Results: A significant difference was found in caregivers’ burden and depressive symptoms according to the age of onset. However, there was no difference in caregivers’ quality of life between YOD and LOD groups. In both groups, a linear regression analysis indicated that caregivers’ perspective of quality of life of care recipient and caregivers’ hopelessness were associated with their quality of life. In addition, in the LOD group, caregivers’ burden was associated with their perspective of the quality of life of care recipient, type of kinship, and presence of emotional problems. In the YOD group, caregivers’ burden was associated with duration of caregiving role, cohabitating with care recipient, and their anxiety symptoms. Caregivers’ depressive symptoms were associated with anxiety symptoms in the YOD group, whereas hopelessness was associated with caregivers’ depressive symptoms in both the groups. Conclusion: Our findings suggest that the factors that affect quality of life, burden, and depressive symptoms of caregivers of individuals with LOD differ from those that affect the caregivers of individuals with YOD.

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Amisulpride for very late-onset schizophrenia-like psychosis: the ATLAS three-arm RCT

Health Technology Assessment ◽

10.3310/hta22670 ◽

2018 ◽

Vol 22 (67) ◽

pp. 1-62 ◽

Cited By ~ 1

Author(s):

Robert Howard ◽

Elizabeth Cort ◽

Rosie Bradley ◽

Emma Harper ◽

Linda Kelly ◽

...

Keyword(s):

Quality Of Life ◽

Cost Effectiveness ◽

Low Dose ◽

Social Care ◽

Late Onset ◽

Health Technology ◽

Extrapyramidal Symptoms ◽

Antipsychotic Treatment ◽

Stage 1

Background Very late-onset (aged ≥ 60 years) schizophrenia-like psychosis (VLOSLP) occurs frequently but no placebo-controlled, randomised trials have assessed the efficacy or risks of antipsychotic treatment. Most patients are not prescribed treatment. Objectives The study investigated whether or not low-dose amisulpride is superior to placebo in reducing psychosis symptoms over 12 weeks and if any benefit is maintained by continuing treatment thereafter. Treatment safety and cost-effectiveness were also investigated. Design Three-arm, parallel-group, placebo-controlled, double-blind, randomised controlled trial. Participants who received at least one dose of study treatment were included in the intention-to-treat analyses. Setting Secondary care specialist old age psychiatry services in 25 NHS mental health trusts in England and Scotland. Participants Patients meeting diagnostic criteria for VLOSLP and scoring > 30 points on the Brief Psychiatric Rating Scale (BPRS). Intervention Participants were randomly assigned to three arms in a two-stage trial: (1) 100 mg of amisulpride in both stages, (2) amisulpride then placebo and (3) placebo then amisulpride. Treatment duration was 12 weeks in stage 1 and 24 weeks (later reduced to 12) in stage 2. Participants, investigators and outcome assessors were blind to treatment allocation. Main outcome measures Primary outcomes were psychosis symptoms assessed by the BPRS and trial treatment discontinuation for non-efficacy. Secondary outcomes were extrapyramidal symptoms measured with the Simpson–Angus Scale, quality of life measured with the World Health Organization’s quality-of-life scale, and cost-effectiveness measured with NHS, social care and carer work loss costs and EuroQol-5 Dimensions. Results A total of 101 participants were randomised. Ninety-two (91%) participants took the trial medication, 59 (64%) completed stage 1 and 33 (56%) completed stage 2 treatment. Despite suboptimal compliance, improvements in BPRS scores at 12 weeks were 7.7 points (95% CI 3.8 to 11.5 points) greater with amisulpride than with placebo (11.9 vs. 4.2 points; p = 0.0002). In stage 2, BPRS scores improved by 1.1 point in those who continued with amisulpride but deteriorated by 5.2 points in those who switched from amisulpride to placebo, a difference of 6.3 points (95% CI 0.9 to 11.7 points; p = 0.024). Fewer participants allocated to the amisulpride group stopped treatment because of non-efficacy in stages 1 (p = 0.01) and 2 (p = 0.031). The number of patients stopping because of extrapyramidal symptoms and other side effects did not differ significantly between groups. Amisulpride treatment in the base-case analyses was associated with non-significant reductions in combined NHS, social care and unpaid carer costs and non-significant reductions in quality-adjusted life-years (QALYs) in both stages. Including patients who were intensive users of inpatient services in sensitivity analyses did not change the QALY result but resulted in placebo dominance in stage 1 and significant reductions in NHS/social care (95% CI –£8923 to –£122) and societal costs (95% CI –£8985 to –£153) for those continuing with amisulpride. Limitations The original recruitment target of 300 participants was not achieved and compliance with trial medication was highly variable. Conclusions Low-dose amisulpride is effective and well tolerated as a treatment for VLOSLP, with benefits maintained by prolonging treatment. Potential adverse events include clinically significant extrapyramidal symptoms and falls. Future work Trials should examine the longer-term effectiveness and safety of antipsychotic treatment in this patient group, and assess interventions to improve their appreciation of potential benefits of antipsychotic treatment and compliance with prescribed medication. Trial registration Current Controlled Trials ISRCTN45593573 and EudraCT2010-022184-35. Funding This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 22, No. 67. See the NIHR Journals Library website for further project information.

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YOUNG AND LATE ONSET DEMENTIA: HOW DO THEY DIFFER IN TERMS OF DOMAINS OF AWARENESS?

10.5327/1980-5764.rpda042 ◽

2021 ◽

Author(s):

Maria Alice Baptista ◽

Nathália Kimura ◽

Isabel Lacerda ◽

Felipe Silva ◽

Marcia Cristina Dourado

Keyword(s):

Quality Of Life ◽

Cognitive Functioning ◽

Functional Activity ◽

Late Onset ◽

Emotional Functioning ◽

Neuropsychiatric Symptoms ◽

Health Condition ◽

Social And Emotional ◽

Late Onset Dementia

Background: Young onset dementia (YOD) is a diagnosis given when the neurocognitive process sets in before 65 years age. The YOD dementia process poses specific challenges related to financial issues, work and social demands, marriage, and parenthood, including losses and shifting roles, care responsibilities, as well as prospects for the future. Those challenges might account for the difference in awareness between YOD and late onset dementia (LOD). Awareness can be defined as the recognition of changes caused by deficits related to the disease process, which may include the ability to recognize a specific deficit, the emotional response to the difficulties presented and the ability to understand the impact of the disease in activities of daily living Objectives: This study is designed to investigate differences in awareness of cognitive functioning and health condition, functional activity impairments, emotional state, and social functioning and relationships among people with young onset (YOD) and late onset dementia (LOD); and examine associations between awareness and its domains with cognition, functionality, neuropsychiatric symptoms, social and emotional functioning and quality of life (QoL) in both groups. Methods: This is a cross-sectional design study. A group of 136 people with dementia and their respective caregivers (YOD = 50 and LOD = 86) were consecutively selected from an Alzheimer’s disease outpatient unit in Rio de Janeiro, Brazil. We assessed awareness of disease, dementia severity, cognition, functionality, neuropsychiatric symptoms, social and emotional functioning, and quality of life. Results: People with YOD were more aware of disease (total score), more aware of their cognitive functioning and health condition and of their functional activity impairments than people with LOD, even if this group was more severely cognitive impaired and had a worse level of functionality than LOD group. Besides, people with YOD had more neuropsychiatric symptoms than people with LOD. Multivariate linear regressions showed that functionality has a wide relationship to awareness for people with YOD. While neuropsychiatric symptoms and quality of life has a greater relation to awareness for people with LOD. Conclusions Different clinical variables are associated to different domains in YOD and LOD groups, reinforcing the heterogeneity of awareness in dementia.

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