Sharing the diagnosis of dementia in the post-Covid clinic: patient and practitioner perspectives
Lead Research Organisation:
University of Edinburgh
Department Name: Centre for Clinical Brain Sciences
Abstract
With the COVID-19 pandemic, most memory clinics switched to remote consultations (by telephone or video-call) to continue to meet the needs of patients while minimising the risk of anyone becoming exposed to the virus. However, there is a significant lack of clarity around how a dementia diagnosis should be delivered remotely and how the person with dementia experiences this process.
The aim of this research is to understand experiences of delivering and receiving a dementia diagnosis during COVID-19 through the exploration of emotional impact, practical impact, and ethical considerations. This project will be co-produced by the researchers and a small group of people living with dementia and their care partners (up to eight people). This group will be consulted at each stage of the research.
About 30 people who have recently been patients at memory clinics since services shifted to remote working (in March 2020) will be interviewed as well as a similar number of professionals who have been delivering diagnoses. These interviews will be analysed with the group mentioned above to identify recurring themes. These themes will then be used to inform an online national forum.
Findings from both this online discussion and the interviews will be used to develop a briefing document for policymakers and a guideline for clinicians about how best to deliver a remote dementia diagnosis. Additional outputs will include podcasts to engage the public and academic papers in open access, peer-reviewed journals.
The aim of this research is to understand experiences of delivering and receiving a dementia diagnosis during COVID-19 through the exploration of emotional impact, practical impact, and ethical considerations. This project will be co-produced by the researchers and a small group of people living with dementia and their care partners (up to eight people). This group will be consulted at each stage of the research.
About 30 people who have recently been patients at memory clinics since services shifted to remote working (in March 2020) will be interviewed as well as a similar number of professionals who have been delivering diagnoses. These interviews will be analysed with the group mentioned above to identify recurring themes. These themes will then be used to inform an online national forum.
Findings from both this online discussion and the interviews will be used to develop a briefing document for policymakers and a guideline for clinicians about how best to deliver a remote dementia diagnosis. Additional outputs will include podcasts to engage the public and academic papers in open access, peer-reviewed journals.
Organisations
Publications
Mur J
(2023)
Anticholinergic burden in middle and older age is associated with lower cognitive function, but not with brain atrophy.
in British journal of clinical pharmacology
Mur J
(2022)
Association between anticholinergic burden and dementia in UK Biobank.
in Alzheimer's & dementia (New York, N. Y.)
| Description | The interviews with people with dementia who were given a remote (telephone/videocall) diagnosis of dementia during the Covid-19 lockdown and staff who gave such diagnoses have been completed. The research team, working together with our Research Advisory Group (comprising people with lived experience of dementia, either themselves personally or someone close to them), have now analysed these interviews to identify themes which emerge. The whole project has been informed by co-production principles and our opinion is that it has greatly enhanced the work. We have already had our project covered in the World Alzheimer Report 2021. We have released a podcast series on the research project and topic more broadly as well as working with an animator to summarise the project and our findings in an accessible format. These animations were voiced by a member of our lived experience group. We are close to submitting our findings to a peer-reviewed journal. The project webpage is: https://www.alzscotdrc.ed.ac.uk/dementia-diagnosis-post-covid The podcast ("Diagnosing dementia during Covid-19") is available through all podcast channels, e.g. Spotify: https://open.spotify.com/show/5s6l2G84dzobsT9JoQFAwq The animated film aimed at the general public: https://www.youtube.com/watch?v=PV-jtucoxJY The animated film aimed at professionals: https://www.youtube.com/watch?v=hEj7FkNZgtA |
| Exploitation Route | We have strengthened our links with the NRS (NHS Research Scotland) Neuroprogressive and Dementia Network and will continue to collaborate closely with them - particularly their PPI group, Partners in Research - going forward. |
| Sectors | Healthcare,Government, Democracy and Justice |
| URL | https://www.alzscotdrc.ed.ac.uk/dementia-diagnosis-post-covid |
| Description | We have disseminated our findings to NHS clinical services locally and across the UK to inform their consideration of the use of remote dementia diagnosis in service redesign. |
| First Year Of Impact | 2022 |
| Sector | Healthcare |
| Impact Types | Societal |
| Description | 'BUDD's Co-producing Research' - presentation at Neuroprogressive and Dementia Network conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Lindsay Kinnaird, a researcher on the project, discussed co-producing research with the Patient and Public (PPI) involved in this study: 'Better Understanding Dementia Diagnosis' (BUDD) group. The talk covered working with people who have personal experience of dementia, how the group were assisting the research, what makes it work, and the benefits of the co-production approach. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.nhsresearchscotland.org.uk/uploads/tinymce/NDN%20Conference%202021%20Agenda.pdf |
| Description | Animated film summarising project's findings for a professional audience |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | We produced a pair of animated videos - voiced by one of our lived experience group - summarising our findings to general and professional audiences. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.youtube.com/watch?v=hEj7FkNZgtA |
| Description | Article in Old Age Psychiatrist Old Age Psychiatry Faculty Newsletter |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The articles purpose was to describe the study, encourage practitioners to reflect on their practice during the pandemic and to invite those interested to participate. Impacts are around recruitment of practitioners. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://i.emlfiles4.com/cmpdoc/1/3/3/1/9/1/files/80591_old-age-psychiatrist---september-2021-final.p... |
| Description | Article in World Alzheimer Report 2021 - Journey through the diagnosis of dementia |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Article describing changes to dementia diagnosis during UK Covid-19 lockdowns, the study methods, aims and intended outputs. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.alzint.org/u/World-Alzheimer-Report-2021.pdf?fbclid=IwAR2n6OA6pqmchBitBgGBeJoyjTVO7p_xdX... |
| Description | Diagnosing Dementia During Covid-19 podcast series |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | A six-part series focussed on changes to dementia diagnosis during the UK Covid-19 lockdowns. The series covers the context of this study, diagnosis of dementia, virtual/telephone diagnosis, and, ultimately, the project's findings. The series is co-produced with the Better Understanding Dementia Diagnosis Stakeholder (BUDDs) advisory group. Aimed at a broad audience the series is available on all major listening platforms. The first episode was released on 8th March 2022; audience reach and impact is yet to be determined but is hoped to develop and grow throughout the series. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://open.spotify.com/show/5s6l2G84dzobsT9JoQFAwq |
| Description | Interview for national news |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | One of the members of our lived experience group was interviewed by BBC news about her experiences of dementia and with this research project. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.bbc.co.uk/news/uk-scotland-62913388 |
| Description | Interview for national news |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Another member of our lived experience group was asked about her experience of dementia in a relative and this research project. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.heraldscotland.com/news/23000307.groundbreaking-dementia-study-finds-treatment-best-pers... |
| Description | Online video summarising results of research project for a general audience |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | We produced a pair of animated videos - voiced by one of our lived experience group - summarising our findings to general and professional audiences. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.youtube.com/watch?v=PV-jtucoxJY |