Dr Dr Bridget Jones
Having graduated with a first degree (BSc) in food, nutrition and marketing from the University of Surrey, Bridget followed a successful career in food and wellbeing publishing, including extensive project development and management experience. Bridget has also written extensively on food, cooking, diet and wellbeing for international book publishers.
In 2010 she returned to the University of Surrey to study for an MSc in Health Psychology, and then progressed to complete mixed-methods research into coping responses relating to diagnosis with multiple sclerosis, gaining a PhD in Health Psychology in 2014. The primary area for her post-doctorate research has been on the RHAPSODY project, an international and multidisciplinary research project into information and support provision for families coping with young-onset dementia. Bridget is also involved with other projects within the group, particularly those relating to neurological conditions, and she contributes to the Surrey Parkinson’s Research Collaboration (SPaRC).
Bridget completed the postgraduate qualification in Health Psychology Practice in 2014 and is a chartered Health Psychologist and registered practitioner in the Health & Care Professions Council (HCPC). She is a fellow of the Higher Education Academy and lectures on health psychology and topics relating to her research into chronic neurological conditions.
Bridget has extensive career experience in collaboration, communication and public engagement alongside project management within international publishing, and her recent years of academic experience contribute to her appreciation of the importance of research-practice liaison, particularly across all aspects of health research.
Bridget's research interest is in chronic neurological conditions, including Parkinson's disease and dementia, particularly among younger age groups, where diagnosis has both acute and long-term implications at individual, familial and service-provision levels.
To identify information available in six European countries (England, France, Germany, Netherlands, Portugal, Sweden) that addresses the specific needs of people with young onset dementia (YOD) and their carers, and identify gaps.
Search of websites of organisations with potential interest in dementia. Narrative synthesis and comparative analysis.
21 sources of information were identified (Netherlands 6, England 6, France 3, Germany 2, Portugal 2, Sweden 2); 11 were from voluntary sector organisations. Sources dedicated to YOD were limited (4 websites, 4 books); all other YOD information was sub-entries in generic dementia sources, difficult to locate and with limited coverage of relevant topics. Gaps related to implications of living with YOD in Germany, Portugal and Sweden.
Availability of information varies among countries, some having no dedicated source and incomplete coverage of issues of importance to YOD.
Information is an important means of supporting carers; their needs change as the condition progresses. A comprehensive resource collating key information is needed so that the issues that differentiate the specific needs of people living with YOD from those of people with dementia in older age are available and easily located.
Younger people with dementia face significant challenges in gaining access to age- and needs-appropriate support. In this paper, we tell the story so far, of the ANGELA
Research Project, which seeks to develop guidance to improve the ?dementia journey? for younger people with dementia and their families/supporters.
Our story is one of a research group aiming to conduct clinically relevant research to achieve positive changes for younger people with dementia. Our research journey will last 3 years and is now almost one year in. In this article, we aim to convey some of the decisions we have made to date, and what lies ahead for a successful implementation.
So far, we have been forming as a research group and turning our initial ideas into plans that will work in the real world. Our methods for ensuring all elements of the project work well have involved internal and external aspects and processes. These have included involvement with and feedback from experts-by-experience and an advisory panel.
To date we have generated a protocol for all the key elements and have launched the Improving Support and Service Use Survey; a national survey gathering evidence from younger people with dementia and their supporters. In this article, we present how we aim to move forward to bring positive real-life changes to the lives of those affected by young onset dementia.
There is a cautiously happy ending to this first phase, as we are now collecting data. However, the judgement of whether the Angela Project is a success overall will depend on whether it makes a difference at its conclusion to younger people with dementia and their supporters.
Increased awareness of dementia is associated with its rising prevalence in an ageing population. Young-onset dementia (YOD) is diagnosed when symptoms occur under the age of 65. Although YOD is less common, with an estimated occurrence of 100 people aged 45-64 per 100,000 population, it can have a devastating effect on family members, who face a lack of age-appropriate information and support.
This article has two objectives: to describe an international multidisciplinary research project to develop and test an online resource for carers of people diagnosed with YOD and to reflect on the experience of working on the project from the perspective of an early career researcher. The author describes how the international nature of the study, the multidisciplinary context and liaison with participants have helped to consolidate the author?s learning and professional development.
The European RHAPSODY project sought to develop and test an online information and support programme for caregivers of individuals diagnosed with young onset dementia. The objectives were to assess user acceptability and satisfaction with the programme and to test outcome measures for a larger effectiveness study.
A pilot randomised controlled trial in England, France, and Germany was conducted with 61 caregivers for adults with young onset Alzheimer's disease or frontotemporal degeneration. Evaluations at baseline, week 6, and week 12 assessed user acceptability and satisfaction. Use of the programme was measured from online back?end data. Qualitative feedback on user experiences was collected via semi?structured interviews. Measures of caregiver well?being (self?efficacy, stress, burden, frequency of patient symptoms, and caregiver reactions) were explored for use in a subsequent trial.
Participants logged in online on average once a week over a 6?week period, consulting approximately 31% of programme content. Seventy percent of participants described the programme as useful and easy to use. Eighty?five percent expressed intent to use the resource in the future. Reductions in reported levels of stress and caregivers' negative reactions to memory symptoms were observed following use of the programme.
Results indicated that the RHAPSODY programme was acceptable and useful to caregivers. The programme may be complementary to existing services in responding to the specific needs of families affected by young onset dementia. Distribution of the programme is underway in England, France, Germany, and Portugal.