COVID-19: Supporting family carers in making decisions for older relatives with dementia
Lead Research Organisation:
University College London
Department Name: Primary Care and Population Sciences
Abstract
Background: If an older relative with dementia with suspected COVID-19 becomes unwell quickly, family carers and the person with dementia may have to make rapid decisions. Decisions may concern hospital admission or whether to receive care at home, social distancing, and which treatments the person may or may not wish to receive. This can include very difficult decisions such as whether the person wishes to be resuscitated or have other potentially traumatic treatments. These decisions will have an impact on the emotional wellbeing of both the family and person with dementia.
Aim: We will produce an evidence-based decision tool to support family carers and people with dementia to make these difficult decisions during COVID-19.
Methods: This project will consist of three phases: 1) We will identify key factors influencing the choice of place of death in older people, conducting a rapid review of the evidence; 2) We will review and analyse common challenges and decisions family carers of people with dementia are making in relation to COVID-19, from the Alzheimer's Society online community forum. We will also explore concerns of people living with dementia during COVID-19 reported on the forum and; 3) Together with people living with dementia, family carers and health care professionals, we will develop a decision tool for family carers and people with dementia to use when making difficult decisions.
Dissemination and Impact: The tool will provide carers with a clear framework to help them to make decisions and ease feelings of guilt, burden, stress, strain and anxiety. We will work closely with Marie Curie Charity, Alzheimer's Society and British Geriatrics Society to disseminate the tool and our findings to the people who may benefit from using them.
Aim: We will produce an evidence-based decision tool to support family carers and people with dementia to make these difficult decisions during COVID-19.
Methods: This project will consist of three phases: 1) We will identify key factors influencing the choice of place of death in older people, conducting a rapid review of the evidence; 2) We will review and analyse common challenges and decisions family carers of people with dementia are making in relation to COVID-19, from the Alzheimer's Society online community forum. We will also explore concerns of people living with dementia during COVID-19 reported on the forum and; 3) Together with people living with dementia, family carers and health care professionals, we will develop a decision tool for family carers and people with dementia to use when making difficult decisions.
Dissemination and Impact: The tool will provide carers with a clear framework to help them to make decisions and ease feelings of guilt, burden, stress, strain and anxiety. We will work closely with Marie Curie Charity, Alzheimer's Society and British Geriatrics Society to disseminate the tool and our findings to the people who may benefit from using them.
Publications
Aker N
(2021)
Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life.
in BMC health services research
Armstrong M
(2022)
Trust and inclusion during the Covid-19 pandemic: Perspectives from Black and South Asian people living with dementia and their carers in the UK.
in International journal of geriatric psychiatry
Moore KJ
(2020)
Supporting families in end-of-life care and bereavement in the COVID-19 era.
in International psychogeriatrics
West E
(2021)
Rapid development of a decision-aid for people with dementia and their families during COVID-19
in European Psychiatry
West E
(2021)
Rapid review of decision-making for place of care and death in older people: lessons for COVID-19.
in Age and ageing
West E
(2022)
Rapid development of a COVID-19 care planning decision-aid for family carers of people living with dementia.
in Health expectations : an international journal of public participation in health care and health policy
| Description | We worked with family carers (current and former) of people living with dementia, people living with dementia themselves and experts who support people living with dementia and their carers to develop a decision aid to help carers when making decisions during the Covid-19 pandemic. The aid covers a number of decisions carers may need to make if the person they are caring for has or is suspected to have COVID-19. The decision aid is split into three section: care art home, care in a care home, and hospital admissions. Across these topics we include decisions such as how to care for them if they are unable to visit them, whether they should go to hospital if they become unwell and what it means to have a do not attempt cardiopulmonary resuscitation order. The document guides carers through the process of making these difficult decisions whilst taking into consideration wishes and preferences of the person living with dementia and the legal aspects of making decisions. We also provide useful tips for carers such as the COVID-19 symptoms to watch out for which may differ to the commonly recognised symptoms, where to find help and support when making decisions and how to look after yourself as a carer. |
| Exploitation Route | The decision aid is being implemented in the NHS and by family carers across the UK. |
| Sectors | Healthcare |
| URL | http://www.ucl.ac.uk/psychiatry/decision-aid |
| Description | The decision aid has been implemented by NHS England and Improvement in the national Dementia COVID-19 pathway. This has led to the decision aid being widely distributed across the NHS including to all dementia clinical leads. We are aware that the decision aid is being used by many clinical services who are sharing it with patients and with families. We placed a large emphasis on sharing locally and through carer/dementia organisations to ensure we reached the target audience of family carers. We have received a large amount of positive responses from family carers on social media including Twitter. We submitted evidence to the APPG Dementia inquiry on social care from this project to inform evidence based practice. |
| Sector | Healthcare |
| Impact Types | Societal,Policy & public services |
| Description | Domiciliary care |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | it is being used to support families by a domiciliary care organisation in Brighton. |
| Description | Hospital discharge planning |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | The decision aid is being used in North London Hospital to guide discharges and discharge planning for people living with dementia during Covid-19. |
| Guideline Title | Dementia wellbeing in the COVID-19 pandemic |
| Description | NHS England |
| Geographic Reach | National |
| Policy Influence Type | Citation in clinical guidelines |
| Impact | This will be used across the nhs to guide support for people with dementia and their carers during covid-19 pandemic. This is the main guidance being given by the nhs on dementia care during covid-19. This will reach all nhs staff and services. |
| URL | https://www.england.nhs.uk/publication/dementia-wellbeing-in-the-covid-19-pandemic/?utm_source=Marie... |
| Description | Shared with all dementia clinical leads |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Impact | The decision aid has been widely circulated by NHS England to all of the dementia clinical leads in England. They have responsibility to share best practice and lead by example. |
| Description | PhD Programme for Primary Care Clinicians |
| Amount | £8,724,456 (GBP) |
| Funding ID | 223501/Z/21/Z |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2022 |
| End | 09/2029 |
| Title | Rapid co-design |
| Description | We tailored and adapted co-design research methods to inform a rapid development of the decision aid to meet the urgent need during the pandemic. |
| Type Of Material | Data analysis technique |
| Year Produced | 2020 |
| Provided To Others? | No |
| Impact | This will be published in the next 6-12months and will outline how methods can be adapted to main rigor and still be systematic producing outputs rapidly. |
| Description | Alzheimer's Society |
| Organisation | Alzheimer's Society |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Expertise in the development of a decision aid. We have provided input on their covid-19 guidance and recommendations. |
| Collaborator Contribution | They provided us with access to their forum talking point for us to do a rapid analysis of the information provided on the website. they attended a co-design workshop to input on the development of the decision aid and they have supported the dissemination of the decision aid. |
| Impact | Decision aid to support family carers of people living with dementia during Covid-19 |
| Start Year | 2020 |
| Description | Dementia UK |
| Organisation | Dementia UK |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | We provided expertise in the development of the decision aid and developed the decision aid. |
| Collaborator Contribution | Dementia UK supported the development of the decision aid. They provided us with access to support line staff at their organization and a member of Dementia UK attended co-design meetings to develop the decision aid. They have support dissemination of the decision aid. |
| Impact | Decision aid supporting family carers of people living with dementia during Covid-19 |
| Start Year | 2020 |
| Description | Marie Curie |
| Organisation | Marie Curie |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Expertise in the development of the decision aid. |
| Collaborator Contribution | They provided us with access to telephone support line staff and contributed to the development of the decision aid. |
| Impact | Decision aid for family carers of people living with dementia during Covid-19 |
| Start Year | 2020 |
| Description | Radbound University |
| Organisation | Radboud University Nijmegen |
| Country | Netherlands |
| Sector | Academic/University |
| PI Contribution | Dr Nathan Davies provided advice on the priorities of research in the field on nutrition and dementia care to prof Koopmans when applying for funding in the Netherlands. Prof Liz Sampson is now a member of their advisory group. This led to an invitation from Prof Koopman to Dr Davies to present as part of a prestigious symposium at the International Psychogeriatrics Association. |
| Collaborator Contribution | They provided us with an opportunity to present out work to an international audience and provided input into what they thought were the key priorities in this field. |
| Impact | Invited to participate at a symposium at the International Psychogeratircs association conference 2020. |
| Start Year | 2020 |
| Title | Decision aid/guide |
| Description | We have developed a decision aid which is available online and can be downloaded to be edited by users. The guide covers a number of decisions carers may need to make if the person they are caring for has or is suspected to have COVID-19. These include decisions such as how to care for them if they are unable to visit them, whether they should go to hospital if they become unwell and what it means to have a do not attempt cardiopulmonary resuscitation order. The document will guide carers through the process of making these difficult decisions whilst taking into consideration wishes and preferences of the person living with dementia and the legal aspects of making decisions. We also provide useful tips for carers such as the COVID-19 symptoms to watch out for which may differ to the commonly recognised symptoms, where to find help and support when making decisions and how to look after yourself as a carer. |
| Type | Health and Social Care Services |
| Current Stage Of Development | Wide-scale adoption |
| Year Development Stage Completed | 2020 |
| Development Status | Under active development/distribution |
| Impact | This has been implemented into NHS England cOVID-19 dementia guidance. |
| Description | Alzheimer's Society newsletter |
| 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 | Nathan Davies was interviewed for a magazine by the Alzheimer's Society and shared the work we have done on the decision aid |
| Year(s) Of Engagement Activity | 2020 |
| Description | Chain network |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | The chain network distributed the details of the decision aid to all members via their weekly email updates. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Dementia chatathon |
| 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 | Media (as a channel to the public) |
| Results and Impact | Nuriye Kupeli and Nathan Davies took part in a live webinar which took place over 12 hours. They presented the decision aid and answered questions about difficulties during the covid-19 pandemic for people living with dementia. This resulted in further invitations to share the decision aid on other channels. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.youtube.com/watch?v=0qFmr8MvERc |
| Description | Enrich blog |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The enrich network is a group of research engaged care homes the decision aid was shared with them which will be directly shared with care homes and care home staff. it also provides an insight in to what research can include and the outputs, which hopefully has an impact on their willingness to take part in research. |
| Year(s) Of Engagement Activity | 2020 |
| Description | European Congress of Psychiatry |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | An oral presentation and a poster presentation. These presentations cover our rapid literature review and the development of the decision aid. The talks will take place in April 21. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Interdem blog |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | We wrote a blog for Interdem which is a pan European network of researchers working in dementia psycho-social research. |
| Year(s) Of Engagement Activity | 2020 |
| URL | http://interdem.org/?p=7395 |
| Description | Lewisham BAME carers forum |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Presented to a group of family carers from BAME backgrounds in South East London. Presented the decision aid and provided them with the link for downloaded. This generated discussions about making decisions at the end of life and the usefulness of the decision aid. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Marie Curie blog |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | This promoted the study and the resulting decision aid aiming it at professionals and families who are the end users. The blog is highly read and shared internationally. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.mariecurie.org.uk/blog/supporting-carers-dementia/277479 |
| Description | Marie Curie 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 | Wide dissemination of the decision aid through the Marie Curie newsletter and links to the impact it has had on policy through NHS England. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://comms-mariecurie.org.uk/1IUE-72JDW-33112B4F974D1132VFOFTO6D7C3B47AF2180CF/cr.aspx |
| Description | NHS Yorkshire and the Humber Dementia and Older Peoples Mental Health Clinical Network |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Wide dissemination of DA to relevant audiences |
| Year(s) Of Engagement Activity | 2020 |
| Description | News post on National Dementia Action Alliance website |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | An overview of the decision aid and the link to download is published on the National Dementia Action Alliance website. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://nationaldementiaaction.org.uk/news/19863/ |
| Description | Podcast for NIHR Dementia Researcher/AS |
| 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 | Other audiences |
| Results and Impact | Nuriye Kupeli was part of a podcast sharing the decision aid and information on the development. The audience is mainly dementia researchers. This led to discussions about our methods and the output of the decision aid. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.dementiaresearcher.nihr.ac.uk/podcast-alzheimers-society-keeping-research-going-during-a... |
| Description | Presented at Alzheimer's Disease International |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | An oral presentation on the development of the decision aid and presenting the components of the decision aid. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Press release of the decision aid |
| 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 | Media (as a channel to the public) |
| Results and Impact | Together with UCL, Marie Curie, Alzheimer's society and Dementia UK we published a press release to promote and disseminate the decision aid we created. This was targeted at a wide range of press but with a big focus on professional press too in order to promote the decision aid to both family carers but also professionals who would actively share the decision aid with our targeted end users. This has led to many organisations nationally contacting us to ask permission to inform us they have started using the decision aid and sharing it with families. Articles were subsequently published in: ? An article is published in Care Home Management ? An article is published in The Carer ? Association of Voluntary Service Managers newsletter The press release was also shared with: The Scottish Dementia Working Group Alzheimers Scotland Contented Dementia Trust The Lewy Body Society RICE (The Research Institute for the Care of Older People) Alzheimers Research UK The Brain Charity Young Dementia UK Dementia Carers Count Rare Dementia Support Live Better with Dementia Dementia United Local Dementia Guide Dementia Today East Lancashire Dementia Friends Independent Age Age UK The Silver Line Carers First John's campaign Carers Trust Carers UK |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.mariecurie.org.uk/media/press-releases/new-support-for-carers-when-making-difficult-deci... |
| Description | SCIE |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The decision aid has been shared on the Social Care Institute for Excellence (SCIE) website. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.scie-socialcareonline.org.uk/supporting-you-to-make-decisions-while-caring-for-someone-l... |
| Description | UCL Qualitative research network conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Presentation of our interview data analysis from interviews with support line staff. This was used as a presentation to demonstrate rapid research methods and development of an intervention (decision aid). This will take place in March 21. |
| Year(s) Of Engagement Activity | 2021 |
| Description | press release to promote study |
| 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 | Media (as a channel to the public) |
| Results and Impact | Together with UCL, Marie Curie, Alzheimer's society and Dementia UK we published a press release to promote the study and raise awareness. This was targeted at a wide range of press but with a big focus on professional press too. This has led to many organisations nationally contacting us to ask for more information about the study. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.mariecurie.org.uk/media/press-releases/dementia-and-covid19-new-research/274788 |