Support for carers of people with early onset dementia
Lead Research Organisation:
University of Surrey
Department Name: Economics
Abstract
RHAPSODY aims primarily at analysing the health and social care systems and infrastructures in six 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 organisation 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.
Using this evidence an established key component of dementia management will be tailored to the requirements of 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.
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 organisation 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.
Using this evidence an established key component of dementia management will be tailored to the requirements of 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.
Planned Impact
Impact on policy and practice will be provided by each component of the project. The analysis and trans-national comparison of pathways to care will pinpoint the focus of strategy development for optimally supporting people with YOD (ambulatory care, respite care, special care units). The assessment of individual needs will result in extending the services of specialised institutions (e. g. memory clinics) by behavioural modification, family counselling and resource management. The intervention for carers will complement the services of patient and carer support organisations. Furthermore it will increase the competence of healthcare professionals with regard to YOD and thus foster early diagnosis and treatment.
Organisations
Publications
Henry C
(2016)
Managing behavioral disturbance with the dementia client through Person-centered care model
in Journal of Alzheimer's Disease & Parkinsonism
Jones B
(2018)
Availability of information on young onset dementia for patients and carers in six European countries.
in Patient education and counseling
Kurz A
(2016)
RHAPSODY - Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot study.
in International psychogeriatrics
Metcalfe A
(2019)
Online information and support for carers of people with young-onset dementia: A multi-site randomised controlled pilot study.
in International journal of geriatric psychiatry
Oyebode, J.
(2016)
Service needs in young onset dementia: How 'closest' relatives balance being a carer, being a care manager and meeting their own needs
in Journal of Neurochemistry
| Description | There is no impact to date but this information will be updated in the future when this develops. |
| Description | Fronto-Temporal Dementia Conference (Munich) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Poster presentation on 'Service needs in Young Onset Dementia: How 'closest' relatives balance being a carer, being a care manager and meeting their own needs'. Presented by Professor Jan Oyebode. The poster provided background information on the RHAPSODY project and the aim of developing an online information and support program for family carers. Findings from focus groups conducted in the UK highlighted the experiences of relatives providing care for someone close to them who was diagnosed with young onset dementia. Three key aspects of the participants' discussion were, firstly, a focus on providing support and care, secondly, fulfilling an essential care manager role and, thirdly, not necessarily recognising their own needs. The presentation raised awareness of carers' circumstances, the effort involved in supporting someone with young onset dementia, and the lack of appropriate services. Conference delegates had the opportunity to ask questions and discuss the on-going research. |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://www.icftd2016.de/ |
| Description | International Conference on Alzheimer's Disease and Dementia (London) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Oral presentation, 'The Development of an online information and support program for informal carers of people living with YOD: The Rhapsody study'. Presented by Dr Bridget Jones. Key objectives of the RHAPSODY study were highlighted. The presentation summarised the research and development stages involved in producing an online program of information for family carers who provided support for someone diagnosed with young onset dementia. Common service and support needs of carers from six countries (England, France, Germany, Netherlands, Portugal and Sweden) were evident from early research phases. The challenges of developing an online program in German, English and French were discussed. The protocol for a randomised controlled pilot study to evaluate the program was presented. The presentation provoked discussion among the multidisciplinary audience about the particular needs of younger people living with dementia, including physiological differences and the broader family impact. |
| Year(s) Of Engagement Activity | 2016 |
| Description | Psychology student lecture / workshop (Kingston, Surrey) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Postgraduate students |
| Results and Impact | Single lecture entitled Perspective on Dementia within a health psychology module in a postgraduate psychology course. (Delivered by Dr Bridget Jones.) Some students had worked (or still worked part time) in clinical or care environments and the module was scheduled in the semester before work-experience placements. The session started with an overview of dementia and considering the differences between dementia diagnosed at older age and young-onset dementia. The broad implications of diagnosis, family impact, health economic aspects and service needs and provision were considered. The RHAPSODY research project provided a basis for discussing approaches to research and the online program was demonstrated. Students discussed and evaluated the program from the perspective of information provision and they considered the potential value of the program from the perspective of carers. There was lively discussion, sharing of experiences and debate on all aspects of dementia, care provision and the service and support needs of different groups. |
| Year(s) Of Engagement Activity | 2016 |
| Description | Technology enhanced learning seminar presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | An overview of the RHAPSODY project was provided in a broader seminar on the development of online courses to academics from faculties across the University of Surrey. The objective was to share experiences of developing technological aids to information provision and learning. Dr Bridget Jones delivered an overview of the research process, the online resource and feedback from participants who tested the programme. The programme design and content was briefly demonstrated. The process of collaboration across six countries to meet the needs of carers of people diagnosed with young-onset dementia was highlighted, with emphasis on the value of the intervention for promoting coping and wellbeing. The presentation was contextualised in terms of the future focus on making the RHAPSODY programme widely available to carers through appropriate service providers and patient support groups. The audience commented positively on the programme and expressed interest in the work involved in its development as well as and the potential for future diverse use of the resource. Specialists in media production offered to assist with minor refinement to enhance certain features, which highlighted opportunities for future collaboration. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Young Dementia Network Video (Young Dementia UK) |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | A brief video recording / comment on the value of research into young onset dementia (Dr Bridget Jones). Emphasising the concept of sharing information and learning, the comment was included among contributions from other supporters of the Young Dementia Network, providing a broad range of perspectives. The video was included as part of the network launch at the Young Dementia UK 2016 conference (Birmingham) and it is featured on the Young Dementia Network website. |
| Year(s) Of Engagement Activity | 2016 |
| URL | https://www.youngdementiauk.org/young-dementia-network |
| Description | Young Dementia UK: Different Impact Positive Solutions (Conference, Birmingham) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Oral presentation, 'RHAPSODY - an international study to improve care for people with young onset dementia by supporting their carers'. Presented by Professor Jan Oyebode and Dr Bridget Jones. The presentation outlined the objectives of the Rhapsody project and emphasised the mixed-methods approach. In-depth interviews and focus groups provided insight into carers' experiences and the difficulties they faced due to the lack of age-appropriate information. Findings from these early studies provided the basis for developing an online information program. The process of developing the program in English, German and French was explained. The protocol for a pilot study to evaluate the program was presented and the vital contribution of carers as participants at every stage in the research was highlighted. The presentation provoked extensive comments and discussion about individual experiences. |
| Year(s) Of Engagement Activity | 2016 |