A cross-sectional evaluation of the Dutch RHAPSODY program: online information and support for caregivers of persons with young-onset dementia

Daemen, Maud; Bruinsma, Jeroen; Bakker, Christian; Zwaaftink, Rob Groot; Koopmans, Raymond T.C.M.; Oostijen, Andrea; Loose, Bernard; Verhey, Frans R.J.; Vugt, Marjolein de; Peetoom, Kirsten

doi:10.1016/j.invent.2022.100530

Cited by 6 publications

(2 citation statements)

References 55 publications

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“…Coaches spend around 6 hours during eight weeks supervising caregivers using the programme. This programme has been subsequently adapted to support caregivers of people with young onset and frontotemporal dementia (22)(23)(24). The effectiveness of these modi ed versions has not been tested yet in a randomised clinical trial (RCT).…”

Section: Online Interventions For Caregiversmentioning

confidence: 99%

Better Living with Non-memory Led Dementia: protocol for a feasibility randomised controlled trial of a web-based caregiver educational programme

González

John

Brotherhood

et al. 2023

Preprint

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Background: Non-memory led dementias such as posterior cortical atrophy (PCA), primary progressive aphasia (PPA) and behavioural variant frontotemporal dementia (bvFTD) are low prevalent and often affect individuals under the age of 65. Tailored educational and support resources for caregivers of people living with these dementia phenotypes are scarce and unevenly distributed geographically. Web-based educational programmes are emerging as promising alternatives to improve caregiver self-efficacy and well-being. The aim of this study is to assess the feasibility of a co-produced online educational programme for caregivers of people living PCA, PPA and bvFTD: the Better Living with Non-memory Led Dementia programme. Methods: A randomised controlled feasibility trial will be conducted on a sample of 30 caregivers of people living with PCA, PPA and bvFTD. Participants will be recruited among members of the support organisation Rare Dementia Support (based at UCL in the UK). The intervention group will be given access to an 8-week co-produced web-based educational programme consisting of 6 modules addressing education about PCA, PPA and bvFTD, support strategies for the person with dementia, and for the caregiver. The control group will receive treatment as usual (TAU). Feasibility will be measured through feasibility of recruitment, clinical measurement tools and acceptability. Clinical measures will be used to assess preliminary efficacy and data on completion rates, missing data and variability used to decide on measures to be included in a full-scale trial. Allocation ratio will be 2:1 (intervention: control) stratified by diagnosis. Feasibility of recruitment and acceptability will be assessed. Clinical measures will be administered at baseline and eight weeks and three months post-randomisation. The control group will be offered access to the intervention at the completion of data collection. Participants will be unblinded and all measures will be self-reported online. Discussion: Online delivered educational programmes show potential for improving care competency of caregivers and may contribute to overcoming geographical inequalities in local provision of support services. This pilot study will inform a fully powered international trial to determine the effectiveness of Better Living with Non-memory led Dementia. Trial registration: This trial has been registered retrospectively on the Clinical Trials registry on 1st September 2022, registration number NCT05525377.

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Section: Online Interventions For Caregiversmentioning

confidence: 99%

Better Living with Non-memory Led Dementia: protocol for a feasibility randomised controlled trial of a web-based caregiver educational programme

González

John

Brotherhood

et al. 2023

Preprint

View full text Add to dashboard Cite

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“…Important elements of postdiagnostic care include ongoing review, receiving YOD specific information, which could be online [33] including discussion about access to financial, legal and employment issues, consideration of children's needs and relationship counselling [29,34]. People with YOD need support to be independent taking into account the risks and to have a “voice” [34].…”

Section: Service Provision and Post-diagnostic Supportmentioning

confidence: 99%

Recent research advances in young-onset dementia

Loi

Pijnenburg

Velakoulis

2022

Current Opinion in Psychiatry

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Purpose of reviewYoung-onset dementia (YOD) refers to a dementia for which symptom onset occurs below the age of 65. This review summarizes the recent literature in this area, focusing on updates in epidemiology, diagnosis and service provision. Recent findingsIn the last year, internationally, the prevalence of YOD was reported as 119 per 100 000, but this may vary according to population types. Although the commonest causes of YOD are Alzheimer's disease (AD) and frontotemporal dementia (FTD), there is increasing recognition that YOD is diagnostically and phenotypically broader than AD and FTD. YOD may be due to many other diseases (e.g. Huntington's disease, vascular dementia) whereas accumulation of the same protein (e.g. amyloid protein) may lead to different phenotypes of Alzheimer's disease (such as posterior cortical atrophy and behavioural-variant/ frontal-variant AD). This heterogeneity of phenotypic presentation is also seen in YOD due to known genetic mutations. Biomarkers such as plasma and cerebrospinal fluid proteins, neuroimaging and genetics have shown promise in the early identification of YOD as well as providing further understanding behind the overlap between psychiatric and neurodegenerative conditions occurring in younger people. The management of YOD needs to consider age-specific issues for younger people with dementia and their family networks together with better integration with other health services such as aged, disability and improved access to services and financial assistance.

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Systematic Review Psychoeducation of Elderly With Depression in Public Health: Philosophical Study

Nurhidayati

Pandin

Nadya

2022

Preprint

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Introduction: The increasing number of elderly is a new challenge for the government and health care. The elderly can experience psychological disorders, one of which is depression. The phenomenon of depression that occurs can make sadness and affect the risk of suicide in the elderly. The lack of integration between mental health and primary healthcare services and the shortage of mental health specialists in the public health system contribute to underdiagnosis and undertreatment of depression.One of the strategy to reduce depression is psychoeducation. The purpose of this study was to describe appropriate psychoeducation for elderly people with depression in public health. Methodology, this research design is a literature review, and article using 4 databases, science direct, ProQuest, PubMed, and CINHAL. 16 Article reviewed from 2018 to 2022 . Protocol and evaluation of literature review using PRISMA checklist and Joanna Briggs Institute Guideline. Results Psychoeducation can be carried out with various themes, namely providing health information for the elderly such as hypertension and diabetes mellitus, maintaining daily routines, stress management, solving depression problems, social skills, breathing exercises, and information on drug side effects. Psychoeducation is more effective with involving friends, family, and the community. Conclusion Depression among the elderly will become the world's problem in the future. Therefore, the quality of elderly depression care needs to be improved. Psychoeducation is more effective by involving family, friends and social environment. Hence, specific psychoeducation for elderly depression can be one of the standards in nursing competencies. Keywords: Literature review, psychoeducation, elderly, depression.

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A cross-sectional evaluation of the Dutch RHAPSODY program: online information and support for caregivers of persons with young-onset dementia

Cited by 6 publications

References 55 publications

Better Living with Non-memory Led Dementia: protocol for a feasibility randomised controlled trial of a web-based caregiver educational programme

Better Living with Non-memory Led Dementia: protocol for a feasibility randomised controlled trial of a web-based caregiver educational programme

Recent research advances in young-onset dementia

Systematic Review Psychoeducation of Elderly With Depression in Public Health: Philosophical Study

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