RHAPSODY-plus: Online Counseling for Family Caregivers of Patients With Young Onset Dementia

NCT03923517 | Completed

• 1 other identifier: RP123
• Study Type: interventional
• Target: 20
• Locations: 1 country
• Sites: 1

Brief Summary

The RHAPSODY-plus project consists of two parts. In a first step carers of people with young onset dementia (YOD; onset before the age of 65) have the opportunity to use the RHAPSODY online program (Kurz et al., 2016) to inform themselves about different topics on young onset dementia. In a second step the participants will receive two individual counseling sessions via MEET (online videoconferencing) with a social worker and a psychologist. Goal is to investigate whether these counseling sessions have an additional benefit.

Conditions

Early Onset Alzheimer Disease; Frontotemporal Dementia

Keywords

Young onset dementia; caregiver; online intervention; online communication technology

Outcome Measures

Primary Outcomes (1)

• Acceptability and usefulness

  The primary aim of this study is to determine whether the online-video conference-counseling is considered acceptable and useful by the family caregivers. This will be derived from the analysis of caregiver interviews (qualitative research methods).

  1 year

Secondary Outcomes (1)

• Feasibility

  1 year

Study Arms (1)

YOD caregiver

EXPERIMENTAL

The participants will be encouraged to use RHAPSODY for four weeks. After that they will have two individual MEET sessions with experts (social worker and psychologist).

Device: RHAPSODY online program and MEET online sessions

Interventions

RHAPSODY online program and MEET online sessions DEVICE

internet-based information and skill-building program (RHAPSODY) specifically developed for family carers of care recipients with young onset dementia (Kurz, et al., 2016). MEET is a software for online meetings.

YOD caregiver

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• informal carer of a person with YOD who has been diagnosed with either Frontal Temporal Dementia (FTD) or Alzheimer's Disease (AD) 12 months ago or less;
• the carer has face-to-face contact with the person with YOD at least twice a weak;
• the carer has a working computer and internet access in his home;
• the carer is available for the intervention duration of approximately eight weeks;
• the carer is fluent in German;
• signed consent form.

You may not qualify if:

• the carer has face-to-face contact with the person with YOD less than twice a week;
• the person with YOD the carer is caring for has a different dementia cause other than FTD or AD or the diagnosis is older than 12 months;
• the carer does not have a working computer and internet access at home or is not confident to use them;
• the carer is not available for the approximately eight week intervention duration;
• the carer is not fluent in German;
• the carer has a significant health problem or disability, which precludes him/her from participating in the study;
• no signed informed consent.

Sponsors & Collaborators

• Technical University of Munich: lead
• University of Melbourne: collaborator

Study Sites (1)

Zentrum für kognitive Störungen, Psychiatrische Klinik und Poliklinik, Klinikum Rechts der Isar, TU München

München, Bavaria, 81675, Germany

Location

Related Publications (2)

• Kurz A, Bakker C, Bohm M, Diehl-Schmid J, Dubois B, Ferreira C, Gage H, Graff C, Hergueta T, Jansen S, Jones B, Komar A, de Mendonca A, Metcalfe A, Milecka K, Millenaar J, Orrung Wallin A, Oyebode J, Schneider-Schelte H, Saxl S, de Vugt M. RHAPSODY - Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot study. Int Psychogeriatr. 2016 Dec;28(12):2091-2099. doi: 10.1017/S1041610216001186. Epub 2016 Aug 30.

  PMID: 27572272 BACKGROUND

• Lautenschlager NT, Diehl-Schmid J, Loi SM, Mayer J, Tensil M, Kurz AF. Modern technology to support carers of care recipients with dementia or functional mental illness: promising progress, but a long road ahead. Int Psychogeriatr. 2017 Dec;29(12):1933-1935. doi: 10.1017/S1041610217002150.

  PMID: 29130870 BACKGROUND

MeSH Terms

Conditions

Alzheimer Disease; Frontotemporal Dementia

Condition Hierarchy (Ancestors)

Dementia; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Tauopathies; Neurodegenerative Diseases; Neurocognitive Disorders; Mental Disorders; Frontotemporal Lobar Degeneration; TDP-43 Proteinopathies; Proteostasis Deficiencies; Metabolic Diseases; Nutritional and Metabolic Diseases

Study Officials

• Janine Diehl-Schmid, Prof.

  Technical University of Munich

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: OTHER
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Professor

Model Details: This pilot study is a single-site study. One intervention group (no control group) Not randomised Open label

Study Record Dates

• First Submitted: April 12, 2019
• First Posted: April 22, 2019
• Study Start: January 1, 2018
• Primary Completion: May 30, 2019
• Study Completion: May 30, 2019
• Last Updated: September 17, 2019

Record last verified: 2019-09

Locations

DE (1)