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1. Quality of life in young onset dementia: an updated systematic review

Author

Maria Alice Tourinho Baptista, Raquel Luiza Santos, Nathália Kimura, Isabel Barbeito Lacerda, Aud Johannenssen, Maria Lage Barca, Knut Engedal, and Marcia Cristina Nascimento Dourado

Subjects
Demência de início precoce, qualidade de vida, bem-estar, necessidades não atendidas, pessoas com demência de início precoce, cuidadores, Psychiatry, RC435-571
Abstract

Introduction Young onset dementia (YOD) develops before 65 years of age and has specific age-related adverse consequences for quality of life (QoL). We systematically examined factors related to the QoL of people with YOD and their caregivers. Method This systematic review used the PRISMA methodology. The literature search was undertaken on July 5, 2015, using Cochrane, PubMed, SciELO, PsycINFO, Scopus and Thomson Reuters Web of Science electronic databases. The search keywords included early onset and young onset combined with, dementia, Alzheimer, vascular dementia, mixed dementia, frontotemporal dementia, quality of life, well-being and unmet needs. Nine studies were included. We revised objectives, study design, sample, instruments and results related to QoL. Results People with YOD rated their own QoL significantly higher than their caregivers. Greater awareness of disease among people with YOD is associated with better QoL in caregivers. A relationship was found between unmet needs and daytime activities, lack of companionship and difficulties with memory. Issues associated with unmet needs were prolonged time to diagnosis, available health services and lack of caregiver's own future perspective. Conclusion Consideration should be given to conducting investigations with more homogeneous samples and use of a clear concept of QoL. The present study highlights the need for future research in a wider range of countries, using instruments specifically for YOD. It would be interesting if studies could trace parallels with late onset dementia groups. more...

Published
2016
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2. Differences in Awareness of Disease Between Young-onset and Late-onset Dementia

Author

Aud Johannenssen, Nathália Kimura, Knut Engedal, José Pedro Simões, Jerson Laks, Raquel Luiza Santos, Maria Lage Barca, Maria Alice Tourinho Baptista, Valeska Marinho, and Marcia Cristina Nascimento Dourado more...

Subjects
Male, Yod, Cross-sectional study, Disease, 03 medical and health sciences, 0302 clinical medicine, Quality of life, Humans, Medicine, Dementia, 030212 general & internal medicine, Age of Onset, Aged, 80 and over, business.industry, Cognition, Awareness, Middle Aged, medicine.disease, Psychiatry and Mental health, Clinical Psychology, Cross-Sectional Studies, Mood, Caregivers, Quality of Life, Female, Geriatrics and Gerontology, Age of onset, business, Gerontology, 030217 neurology & neurosurgery, Clinical psychology
Abstract

INTRODUCTION Awareness of disease is the ability to acknowledge changes caused by deficits related to the disease process. We aimed to investigate whether there are differences in awareness of disease between young-onset dementia (YOD) and late-onset dementia (LOD) and examined how awareness interacts with cognitive and clinical variables. MATERIALS AND METHODS Using a cross-sectional design, 49 people with YOD and 83 with LOD and their caregivers were included. We assessed awareness of disease, cognition, functionality, stage of dementia, mood, neuropsychiatric symptoms, and caregivers' quality of life (QoL) and burden. RESULTS We found that people with YOD were more aware of the disease than people with LOD (P more...

Published
2019
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3. Caregivers' Perspectives of Quality of Life of People With Young- and Late-Onset Alzheimer Disease

Author

Nathália Kimura, Raquel Luiza Santos, Jerson Laks, Maria Lage Barca, Valeska Marinho Rodrigues, Knut Engedal, Maria Alice Tourinho Baptista, Aud Johannenssen, Maria da Glória Portugal, José Pedro Simões, and Marcia Cristina Nascimento Dourado more...

Subjects
Gerontology, Male, Activities of daily living, 03 medical and health sciences, 0302 clinical medicine, Cognition, Quality of life, Alzheimer Disease, Activities of Daily Living, Adaptation, Psychological, Medicine, Humans, Age of Onset, Depression (differential diagnoses), Aged, Psychiatric Status Rating Scales, 030214 geriatrics, business.industry, Depression, Perspective (graphical), Late Onset Alzheimer Disease, Middle Aged, medicine.disease, humanities, Psychiatry and Mental health, Caregivers, Quality of Life, Regression Analysis, Female, Neurology (clinical), Self Report, Geriatrics and Gerontology, Age of onset, Alzheimer's disease, business, 030217 neurology & neurosurgery
Abstract

Background: Quality of life (QoL) is a growing area of interest in dementia research. This study aims to investigate the caregivers’ perspective about the QoL of people with young-onset Alzheimer disease (YOAD) and late-onset Alzheimer disease (LOAD). We also aim to investigate factors that might be associated to caregivers’ perspective in YOAD and LOAD. Methods: We included 110 people with Alzheimer disease (PwAD; 53 YOAD) and their primary caregivers. The PwAD completed assessments about their QoL and cognition. The caregivers provided information about the PwAD (demographics, QoL, ability to perform activities of daily living, mood, and dementia severity) and had burden of care assessed. Results: We did not find a difference in caregivers’ perspectives of PwAD QoL according to the age at onset. However, the linear regression analysis indicated that caregivers’ burden ( P < .01) and PwAD depressive symptoms ( P < .05) were significantly related to the caregivers’ perspective of YOAD QoL. Caregivers’ burden ( P < .01), years of education ( P < .05), and self-reported QoL ( P < .01) were significantly related to the caregivers’ perspective of LOAD QoL. Conclusions: The factors that drive the perceptions of caregivers of PwAD QoL may vary according to the age at onset. The study provides basic information on caregivers’ perspectives of PwAD QoL to create more effective interventions according to the age at onset. more...

Published
2018