Having graduated with a first degree (BSc) in food, nutrition and marketing from the University of Surrey, Bridget followed a career in food and wellbeing publishing, including extensive project development and management experience, and she has written extensively on food, diet and wellbeing for international publishers. Bridget returned to the University of Surrey to study for an MSc in Health Psychology. She progressed to complete mixed-methods research into coping responses relating to diagnosis with multiple sclerosis, gaining a PhD in Health Psychology in 2014. She is a chartered Health Psychologist, registered practitioner in the Health & Care Professions Council (HCPC) and a fellow of the Higher Education Academy.
Bridget’s interest in chronic neurological conditions broadened through post-doctoral work on RHAPSODY, an international multidisciplinary research project into information and support provision for families with young-onset dementia. She continues to focus with colleagues on funding the implementation phase of the prototype RHAPSODY online support programme. Her further experience in dementia includes contributing to the ANGELA Project to improve diagnosis and post-diagnostic support with young-onset dementia, and working on the Technology Integrated Health Management (TIHM) project for dementia, particularly related to exploring general practitioners’ perspectives. Bridget coordinates the Surrey Parkinson’s Collaboration (SPaRC), and she is currently liaising on the development and evaluation of a self-management hub for people living with Parkinson’s.
Bridget’s primary focus is as project manager on the NIHR-funded study ‘How general practice team composition and climate relate to quality, effectiveness and human resource costs: a mixed-methods study in England’. Her role in SHEC is also to bring a health-psychology perspective to the centre’s activities, including to the Surrey Global Health Research Network; contributing to funding bids; and involvement in on-going projects, such as the evaluation of social prescribing delivery. Her experience with public and patient involvement (PPI) and actively engaging service users in the development and execution of research is valuable across SHEC’s work.
Affiliations and memberships
• Registered practitioner Health Psychologist in Health & Care Professions Council (HCPC)
• Fellow of Higher Education Academy (HEA)
Bridget's research interests relate to self management of chronic neurological conditions and facilitating coping across families and those providing informal support and care for someone diagnosed. The situation among people in younger age groups is of particular relevance, where diagnosis has both acute and long-term impact at individual, familial and service-provision levels with substantial health-economics implications.
Public and Patient Engagement and Involvement in Research
Surrey Health Economics Centre works with public and patient representatives to consider ideas and approaches to research. Public and patient representatives are also involved in all projects. Bridget is experienced in liaising with groups, representatives and individuals to ensure valuable public experiences and opinions inform all stages and aspects of research. Contact Bridget Jones on email@example.com for further details.
Bridget delivers individual lectures at undergraduate and postgraduate level on aspects of health psychology and topics relating to her research.
UK general practice is universally computerised, with computers used in the consulting room at the point of care. Practices use a range of different brands of computer system, which have developed organically to meet the needs of general practitioners and health service managers. Unified Modelling Language (UML) is a standard modelling and specification notation widely used in software engineering.
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 multidisciplinary 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.
Objectives 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. Methods Search of websites of organisations with potential interest in dementia. Narrative synthesis and comparative analysis. Results 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. Conclusion Availability of information varies among countries, some having no dedicated source and incomplete coverage of issues of importance to YOD. Practical implications 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.
Objectives: 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. Design: 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. Methods: 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. Results: 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. Conclusions: 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.
Objectives: Studies on service needs of people with young onset dementia have taken a problem-oriented approach with resulting recommendations focusing on reducing service shortcomings. This study aimed to build on 'what works' in real-life practice by exploring the nature of post-diagnostic support services that were perceived positively by younger people with dementia and carers.Method: Positive examples of support were gathered between August 2017 and September 2018, via a national survey. Inductive thematic analysis was employed to explore the nature of positively experienced services provided for younger people with dementia, including analysis of what was provided by positively experienced services.Results: Two hundred and thirty-three respondents reported 856 positive experiences of support. Data analysis yielded eight themes regarding the objectives of positive services: Specialist Advice and Information on Young Onset Dementia, Access to Age-appropriate Services, Interventions for Physical and Mental Health, Opportunities for Social Participation, Opportunities to Have a Voice, Enablement of Independence while Managing Risk, Enablement of Financial Stability, and Support Interventions for Family Relationships.Conclusion: The study findings (a) suggest that positive services may collectively create an enabling-protective circle that supports YPD to re-establish and maintain a positive identity in the face of young onset dementia, and (b) provide a basis from which future good practice can be developed.
OBJECTIVES: Young onset dementia is associated with distinctive support needs but existing research on service provision has been largely small scale and qualitative. Our objective was to explore service use, cost and satisfaction across the UK. METHODS: Information about socio-demographic characteristics, service use and satisfaction were gathered from people with young onset dementia (YOD) and/or a family member/supporter via a national survey. RESULTS: Two hundred and thirty-three responses were analysed. Diagnosis was most commonly received through a Memory Clinic or Neurology. The type of service delivering diagnosis impacted on post-diagnostic care. Those diagnosed in specialist YOD services were more likely to receive support within the first 6 weeks and receive ongoing care in the service where they were diagnosed. Ongoing care management arrangements varied but generally care was lacking. Around 42% reported no follow-up during 6-weeks after diagnosis; over a third reported seeing no health professional within the previous 3 months; just over a third had a key worker and just under a third had a care plan. Satisfaction and quality of care were highest in specialist services. Almost 60% of family members spent over 5 h per day caring; median costs of health and social care, 3 months, 2018, were £394 (interquartile range £389 to 640). CONCLUSIONS: Variation across diagnostic and post-diagnostic care pathways for YOD leads to disparate experiences, with specialist young onset services being associated with better continuity, quality and satisfaction. More specialist services are needed so all with YOD can access age-appropriate care.
Background: Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling and support to this vulnerable yet underserved group. Methods: The RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) project is a European initiative to improve care for people with YOD by providing an internet-based information and skill-building program for family carers. The e-learning program focuses on managing problem behaviors, dealing with role change, obtaining support and looking after oneself. It will be evaluated in a pilot study in three countries using a randomized unblinded design with a wait-list control group. Participants will be informal carers of people with dementia in Alzheimer’s disease or behavioral-variant Frontotemporal degeneration with an onset before the age of 65 years. The primary outcome will be caregiving self-efficacy after 6 weeks of program use. As secondary outcomes caregivers’ stress and burden, carer health-related quality of life, caring-related knowledge, patient problem behaviors and user satisfaction will be assessed. Program utilization will be monitored and a health-economic evaluation will also be performed. Conclusions: The RHAPSODY project will add to the evidence on the potential and limitations of a conveniently accessible, user-friendly and comprehensive internet-based intervention as an alternative for traditional forms of counseling and support in healthcare, aiming to optimize care and support for people with YOD and their informal caregivers.
Objectives 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. Design 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. Results 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. Conclusions 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.
Evidence that interpersonal interactions and self-appraisal in social context are crucial in developing self-understanding raises concerns about how pupils with autism spectrum disorder make sense of themselves in school settings where many experience social marginalisation. Metasynthesis was used to systematically extract and integrate findings from qualitative studies examining the mainstream school experiences of these students. Synthesised findings identified three, intermeshing, aspects of experience which contribute to many pupils with autism spectrum disorder making sense of themselves as ‘different’ to typical peers in a negative way: difficulties linked to autism spectrum disorder; interpersonal relationships, particularly with peers; and accessibility of the school environment. Typical pupils’ attitudes and responses towards peers with autism spectrum disorder, unusual sensory reactions to the physical school environment and individual sense-making about the self are highlighted as key areas requiring further research and intervention to improve the experiences, self-esteem and well-being of pupils with autism spectrum disorder in inclusive settings and to inform educational policy and practice.
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.