Intervention: RHAPSODY Carer's Guide for Young Onset Dementia
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Transcript of Intervention: RHAPSODY Carer's Guide for Young Onset Dementia
JPND is the largest global research inititive aimed at tackling the challenge of neurodegenerative diseases. JPND aims to increase coordinated investment between participating countries in research aimed
at finding causes, developing cures, and identifying appropriate ways to care for those with neurodegenerative diseases. www.jpnd.eu
www.rhapsody-project.eu
Principal Investigators: France: Bruno Dubois, Paris; Germany: Markus Böhm, Munich; Janine Diehl-Schmid, Munich; Sabine Jansen, Berlin; Alexander Kurz, Munich; Uta Schwertel, Saarbrücken;
The Netherlands: Marjolein de Vugt, Maastricht; Portugal: Alexandre de Mendonça, Lisbon; Sweden: Caroline Graff, Huddinge; United Kingdom: Heather Gage, Surrey
WP1
DE
WP 3
Policy and Information environment analysis
Intervention design
Pilot study
Dissemination
Co
ord
inati
on
, mo
nit
ori
ng,
an
d q
ual
ity
man
agem
ent
Needs assessment
RHAPSODY Project design
Young onset dementia is defined by an onset of symptoms before the age of 65 years.
Less than 2 percent of people with dementia are younger than 65 years.
Alzheimer‘s disease and frontotemporal degeneration are the most common causes of young onset dementia (YOD).
YOD is associated with specific and particularly severe problems for patients and family carers.
Existing health and social care services are usually tailored to the needs of older people with dementia.
There is a lack of services that meet the specific needs of y-ounger people with dementia and their families.
Family careres are in desperate need of information about YOD and existing services.
Background
P45
Care for people with Young Onset
Dementia: A web-based intervention
aiming to support family carers Susanna Saxl, Helga Schneider-Schelte, Deutsche Alzheimer Gesellschaft e.V. (Germany)
information multimedia
communication AG, Saarbrücken
Klinikum rechts der Isar der
Technischen Universität München
Germany
Assistance Publique - Hôpitaux de Paris &
Université Pierre et Marie Curie, Paris
France
Maastricht University School for Mental
Health and Neurosciences, Maastricht
The Netherlands
University of Lisbon Instituto de
Medicina Molecular, Lisbon
Portugal
Karolinska Institutet, Dept NVS Center for
Alzheimer Research, Huddinge
Sweden
University of Surrey, Guildford
United Kingdom
Contact Susanna Saxl Deutsche Alzheimer Gesellschaft e.V. Selbsthilfe Demenz Friedrichstr. 236 10969 Berlin, Germany E-Mail: [email protected] Tel: +49(0)30-259 37 950
Deutsche Alzheimer Gesellschaft
e.V. Selbsthilfe Demenz, Berlin
Pilot study: Evaluation
Major objectives:
- Feasibility and acceptabili-
ty of the program
- Test of procedures and out-
come measures for a larger
trial
Conducted at
three sites
- England,
- France
- Germany
Participants:
primary informal carers of people
with dementia in Alzheimer’s de-
sease (AD) or behavioural vari-
ant frontotemporal dementia
(bvFTD) with an onset of symp-
toms before the age of 65
Access to the
program:
Six weeks
Design:
Randomised and
controlled
Outcomes:
- Caregiving self-efficacy The Revised Scale for Care-giving
Self-Efficacy (RSCSE) (Steffen et al., 2002) - Program feasibility Technology Acceptance Model (TAM)
(Venkatesh and Bala, 2008) - User satisfaction Semi-structured interview
Intervention refinement
Dissemination
Intervention: RHAPSODY Carer's Guide for Young Onset Dementia
Knowledge about neurological basis and treatment of dementia
Educational
3 Languages
7 Parts
English French German
Online available independently of place and time
Interactive
Skill-building