Evidence map›Paper›PMID 36908377›Full record

ArticleDigital health

Online counselling for family carers of people with young onset dementia: The RHAPSODY-Plus pilot study.

Stephanie Perin, Rhoda Lai, Janine Diehl-Schmid, Emily You, Alexander Kurz, Maria Tensil, Michael Wenz, Bettina Foertsch, Nicola T Lautenschlager

Abstract read
In one paragraph

Article in Digital health. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed.

  1. Article
  2. Article
  3. Rehabilitation Services for Young-Onset Dementia: Examples from High- and Low-Middle-Income Countries.International journal of environmental research and public health · 2024
    Review
  4. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Stephanie PerinAcademic Unit for Psychiatry of Old Age, Department of Psychiatry, The University of Melbourne, Melbourne, Australia.
Rhoda LaiAcademic Unit for Psychiatry of Old Age, Department of Psychiatry, The University of Melbourne, Melbourne, Australia.ORCID https://orcid.org/0000-0003-0237-4455
Janine Diehl-SchmidDepartment of Psychiatry and Psychotherapy, School of Medicine, Technical University of Munich, Munich, Germany.
Emily YouAcademic Unit for Psychiatry of Old Age, Department of Psychiatry, The University of Melbourne, Melbourne, Australia.
Alexander KurzDepartment of Psychiatry and Psychotherapy, School of Medicine, Technical University of Munich, Munich, Germany.
Maria TensilDepartment of Psychiatry and Psychotherapy, School of Medicine, Technical University of Munich, Munich, Germany.
Michael WenzSchön Clinic Bad Aibling Harthausen, Alzheimer Therapy Centre, Bad Aibling, Germany.
Bettina FoertschDepartment of Psychiatry and Psychotherapy, School of Medicine, Technical University of Munich, Munich, Germany.
Nicola T LautenschlagerAcademic Unit for Psychiatry of Old Age, Department of Psychiatry, The University of Melbourne, Melbourne, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Objective: Compared to late life dementia, Young Onset Dementia (YOD) has its own distinct challenges, including a lack of specialised and age-appropriate support services. Carers of people with YOD experience higher levels of psychological and physical symptoms, and lower quality of life. This study (RHAPSODY-Plus) assessed the acceptability and feasibility of combining RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young; a web-based information and skill-building programme for carers of people with YOD) with individually tailored support sessions with health professionals (a social worker and a clinical psychologist) provided via online videoconferencing. Methods: Participants (n = 20) were informal carers aged over 18 years, who were caring for a person with YOD (either Alzheimer's disease or frontotemporal dementia type). Participants used the RHAPSODY programme for 4 weeks, then attended 2 support sessions. Participants and the health professionals then attended individual feedback sessions. Feedback was collected via open-ended and Likert-style questions. Results: The majority of carers rated the RHAPSODY-Plus programme as good to very good, demonstrating a high level of acceptability. Positive feedback about the programme included being able to receive personal advice additionally to the information provided in RHAPSODY. The healthcare professionals also thought the programme was acceptable and beneficial for access to support. Some limitations in the feasibility of videoconferencing included network and technical issues and the loss of non-verbal communication. Conclusions: This online pilot study had a high level of acceptability, demonstrating the potential of an individualised multi-modal intervention for carers of people with YOD which offers opportunities to overcome geographical and service access barriers.

Indexed as

Alzheimer's diseasecarerscommunication technologyfrontotemporal dementiaonline counsellingYoung onset dementia

Identifiers

PMID36908377
PMCPMC9998420

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.