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Dementia 2016
September 29-October 01, 2016
Volume 6 Issue 5(Suppl) J Alzheimers Dis Parkinsonism 2016
ISSN:2161-0460 JADP, an open access journal
conferenceseries .com
September 29-October 01, 2016 London, UK
5th International Conference on
Alzheimer’s Disease & Dementia
Bridget Jones, J Alzheimers Dis Parkinsonism 2016, 6:5(Suppl)
The development of an online information and support program for informal carers of people
living with YOD: The Rhapsody study
Bridget Jones
University of Surrey, UK
RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) is an EU Joint Programme -
Neurodegenerative Disease Research (JPND) initiative that aims to improve information and support for families living
with young onset dementia (YOD). Defined by symptom presentation before the age of 65 years, YOD is relatively rare and
associated with diagnosis difficulties. Extensive family impact includes carer burden and stress, relationship disruptions and
financial decline, all of which are exacerbated by a lack of age-appropriate services, support and information. This multi-
disciplinary collaboration across six European countries developed an internet-based e-learning program for families living
with YOD. Information and policies related to YOD were analysed from on-line reviews completed in all countries. Carer
perspectives on needs and experiences were explored using in-depth interviews in the Netherlands, followed by focus groups
in England, France, Germany, Portugal and Sweden. An intervention based on an on-line support program was considered
appropriate due to relatively low prevalence of YOD, georgraphical spread and mobility restrictions resulting from the
condition. Findings from early research stages informed the design and content of the 7-Part program, which explained clinical
background, psychosocial perspectives, family issues, legal aspects and the importance of carer support. Produced in English,
German and French, the intervention was tested by volunteer family carers in England, Germany and France.