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

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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: info@rhapsody-project.eu 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