RHAPSODY aims primarily at analysing the health and social care systems and infrastructures in 6 European countries that are available to the severely burdened yet underserved group of people with Young Onset Dementia (YOD). YOD affects approximately 100 individuals in the population aged 45-64 years and their carers. In addition, RHAPSODY attempts to improve the management of people with YOD by supporting their carers. The main instrument for this will be an educational, web-based, interactive e-learning programme.
A multi-disciplinary team of 8 main investigators from academia and industry representing the fields of psychiatry, neurology, neuropsychology, neuroscience, health economy and information systems as well as a patient and carer advocacy organisations from 6 countries have joined their efforts. They will analyse, evaluate and compare health and social care policies and strategies (macro level) as well as needs and access to service provision and care (individual level). As primary methods documentary analysis, focus groups and qualitative analysis will be employed.
The work plan reflects an evidence-based and bottom-up research approach. It starts from obtaining information on existing healthcare systems and infrastructures. Next these are put in relation to identified individual needs of people with YOD and their family carers. This evidence then guides the design of a therapeutic intervention which is finally evaluated in a pilot study.
Specific research questions are:
1. How is health care organised, financed and delivered in participating countries? How do system differences affect the pathways to diagnosis, treatment and care for people with YOD and their family carers? What policies and guidance exists for health professionals, and what information is nationally provided for patients and carers? Are these the same in the six countries? Is any national health and social system particularly suited to meet the needs of this group?
2 What are the individual needs of people with YOD and of their family carers and which access do they have to service provision and care in 6 European countries?
3 Is an internet-based, multi-module, interactive, educational and skill-building intervention based on established principles of dementia carer support, and tailored to the identified needs and pathways to care, appropriate to help family carers cope with YOD and manage the associated behavioural, interpersonal, organisational and financial problems?
4 Is the content of the intervention suitable for addressing a broader spectrum of users involved in the care of people with YOD, e. g. healthcare professionals, insurances, medical education boards, using various formats of delivery such as e-Books, offline courses, or presentation toolkits?
The Dutch project group will be leading the work package on Needs assessment. This work package aims to: (1) conduct a review of the literature on needs of people with YOD and their carers; (2) identify the needs of people with YOD and their carers at different stages of the disease based on qualitative interviews with 215 carers of the Dutch NeedYD study ; (3) explore differences in experiences, needs and available services of people with YOD and their carers in focus groups across 6 European countries.
Outcomes of the needs assessment and the policy and information environment analysis will be used as key component of the intervention development for the target population of carers with regard to content and format of delivery. An internet-based e-learning programme is particularly appropriate in view of barriers related to low prevalence, geographical spread and reduced mobility.
A pilot study will evaluate the telemedicine intervention with regard to feasibility, acceptance, cost- effectiveness, most appropriate outcomes and effect sizes in 3 countries. Emerging results of the project (identified needs and pathways to care, intervention design, design and results of pilot study) will be disseminated by a comprehensive strategy addressing multiple users by a range of materials (websites, newsletters of dementia organisations across Europe, medical journals, and press conferences). Selected modules and contents of the intervention will be used to create a range of educational materials in different forms (e-Books, presentation toolkits, offline courses and brochures). These will address a variety of potential user and multiplier groups including informal dementia carers, healthcare professionals, service providers as well as nursing home and day care staff.