Bridget Jones

Dr Bridget Jones


Research Fellow

Biography

Research

Research interests

My publications

Publications

Kurz Alexander, Bakker Christian, Böhm Markus, Diehl-Schmid Janine, Dubois Bruno, Ferreira Catarina, Gage Heather, Graff Caroline, Hergueta Thierry, Jansen Sabine, Jones Bridget, Komar Alexander, de Mendonça Alexandre, Metcalfe Anna, Milecka Katrina, Millenaar Joany, Orrung Wallin Anneli, Oyebode Jan, Schneider-Schelte Helga, Saxl Susanna, de Vugt Marjolein (2016) RHAPSODY ? Internet-Based Support For Caregivers of People with Young Onset Dementia: Program Design and Methods of a Pilot Study, INTERNATIONAL PSYCHOGERIATRICS 28 (2) pp. 2091-2099 CAMBRIDGE UNIV PRESS
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.
Jones B (2012) Self-management interventions in chronic illness: Considering benefits for fluctuating conditions, Health Psychology Update 21 (1) pp. 27-29 The British Psychological Society
Ogden J, Amirova A, Brunger H, Hirst Y, Jones B, Pringle A, Wood K, Senior V (2014) The impact of the London Olympics on physical activity, general health status, wellbeing and national identity: a quantitative survey based in Stratford, 2011 and 2012, Health Psychology Update 23 (Autumn) pp. 17-26 The British Psychological Society
Jones B (2016) The Development of an online information and support program for informal carers of people living with YOD: The Rhapsody study, Journal of Alzheimer's Disease and Parkinsonism 6 (5 Supp) OMICS International
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.
Jones Bridget, Gage Heather, Bakker Christian, Barrios Helena, Boucault Sarah, Mayer Johannes, Metcalfe Anna, Millenaar Joany, Parker Wendy, Orrung Wallin Anneli (2017) Availability of information on young onset dementia for patients and carers in six European countries, Patient Education and Counseling 101 (1) pp. 159-165 Elsevier
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.

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.
Stamou Vasileios, La Fontaine Jenny, Oyebode Jan, Jones Bridget, Gage Heather, O?Malley Mary, Parkes Jacqueline (2018) The ANGELA Project: Improving diagnosis and post-diagnostic support for younger people with dementia and their families/supporters, FPOP Bulletin 142 pp. 26-31 The British Psychological Society

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.

Jones Bridget (2019) Young-onset dementia: meeting the information needs of carers, Mental Health Practice RCN Publishing

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.