• The ANGELA Project: Improving diagnosis and post-diagnostic support for younger people with dementia and their families/supporters

      Stamou, Vasileios; La Fontaine Papadopoulos, Jenny H.; Oyebode, Jan R.; Jones, B.; Gage, H.; O'Malley, M.; Parkes, J.; Carter, J. (2018-04)
      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.
    • Family relationships and dementia: A synthesis of qualitative research including the person with dementia

      La Fontaine Papadopoulos, Jenny H.; Oyebode, Jan R. (2014-08)
      Family relationships are important for wellbeing across the life course and are known to be important for people living with dementia, bringing benefits to self-esteem and identity, as well as providing support for people living at home. Recent research has explored the impact of dementia upon relationships. Much of this research is qualitative in nature and rarely included in systematic reviews, however, it has the potential to provide significant contributions to understanding the interplay between family relationships and dementia and to inform interventions. A systematic synthesis of qualitative research concerning the impact of dementia upon family relationships was undertaken, using thematic synthesis. Eleven articles were reviewed, which address the perspectives of people living with dementia and their spouse and/or adult children. The aims of this review are to illuminate what is currently known about the reciprocal influences between family relationships and dementia from the perspectives of the family (including the person with dementia); and to consider the implications of these findings for research and practice. Four super-ordinate themes were identified: A shared history, negotiating the impact of dementia upon the relationship, openness and awareness, and shifting sands. This synthesis contributes to an emerging field but also highlights gaps in current understanding of the impact of dementia upon relationships and in providing appropriate interventions. Implications for research and practice are considered.
    • International consensus on quality indicators for comprehensive assessment of dementia in young adults using a modified e-Delphi approach

      O'Malley, M.; Parkes, J.; Stamou, Vasileios; La Fontaine Papadopoulos, Jenny H.; Oyebode, Jan R.; Carter, J. (2020-11)
      Objective: To develop guidance for clinicians about essential elements that can support clinical decision-making in the diagnostic workup of young onset dementia. Methods/design: Three iterations of a modified e-Delphi consensus survey comprising 23 international expert clinicians specialising in diagnosis of young onset dementia. Outcome measures: A priori consensus was pre-defined as 80% of experts ranking statements in the upper threshold on a seven-point Likert scale that ranged from “not important at all” to “absolutely essential” to diagnosis. Results: 80% consensus was reached on 48 statements that were rated as “absolutely essential” or “very important” to a comprehensive assessment of dementia in a younger adult. In order to inform a subsequent audit of clinical records in which compliance with these statements was assessed, the statements were divided into a Minimum Standard, (consisting of the 15 statements voted by all experts as being “absolutely essential” or “very important”) and a Gold Standard where 48 statements were voted by 80% of the experts as being “absolutely essential” or “very important”. The experts’ response rate across the three rounds was 91.3%. Conclusion: A Minimum Standard and Gold Standard have been created for the diagnostic workup of young onset dementia. The standards provide a clinically useful tool for decision-making, particularly for generalists and those with less experience in the field. The standards will be used to inform a UK case note audit of recently diagnosed patients with young onset dementia.