Identifying and mitigating the individual and dyadic impact of COVID19 and life under physical distancing on people with dementia and carers (INCLUDE)

Lead Research Organisation: UNIVERSITY OF EXETER
Department Name: Institute of Health Research

Abstract

People with dementia say that personal contact is key to their well-being, while many family members providing unpaid care are isolated and feel lonely. People with dementia and the family members who care for them are especially vulnerable to the impact of the physical distancing measures needed to reduce the risk of developing coronavirus (Covid-19) symptoms. These measures can be frightening and can damage well-being and relationships, while reducing accessibility of care services and support. With social restrictions continuing for an extended period, people affected by dementia risk being 'left behind' as the rest of the population adapts. Our approach to delivering high-quality care and support for people affected by dementia must change to take account of this.

In the INCLUDE study we aim to understand the impact of the Covid-19 epidemic and the resulting restrictions on people with dementia and their carers, and to develop resources to address the negative and potentially harmful effects of this situation.

We will invite people with dementia and carers participating in the ongoing 'Improving the experience of Dementia and Enhancing Active Life' (IDEAL) programme to take part in INCLUDE. IDEAL has been following a large group of people with dementia and carers over time to understand what makes it possible for people to 'live well' with the condition. The findings highlight the importance of the very social and psychological resources that are most likely to have been affected by the Covid-19 epidemic.

The INCLUDE study will add a new data collection module to the IDEAL programme. This will be specifically designed to examine the impact of the Covid-19 epidemic and resulting restrictions. Participants will complete questionnaires and respond to open-ended questions in a structured interview, and a sub-set will additionally engage in a more conversational semi-structured interview about their experiences. People with dementia and carers will be involved in developing the interview schedules. We expect 300 people with dementia and 300 carers to complete the structured interview, with up to 50 people with dementia and 50 carers completing the semi-structured interview.

The information that INCLUDE participants provide will enable us to understand how Covid-19 has affected people with dementia and carers as a whole and how the impact differs for particular sub-groups, for example based on age, type of dementia, or socioeconomic status. Because we already have a good deal of information about IDEAL participants we will be able to link their responses with information they provided previously. This will allow us to identify the impact of Covid-19 on trajectories of symptoms and well-being; for example, we can pinpoint where changes over time in particular symptoms are greater than expected. We will also explore the ways in which changes for the person with dementia affect the carer and vice versa.

Working together with people with dementia and carers, we will use the evidence gained to develop the Living Well Alongside Coronavirus (LILAC) toolkit, a set of resources to support social, mental and physical health and relationships for people with dementia and carers, and provide guidance for health, social care and voluntary sector staff.

Publications

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Gamble LD, Parker S, Quinn C, Bennett HQ, Martyr A, Sabatini S, Pentecost C, Collins R, Dawson E, Hunt A, Allan L, Burns A, Litherland R, Victor C, Matthews FE, Clare L (2022) A comparison of well-being of carers of people with dementia and their ability to manage before and during the COVID-19 pandemic: findings from the IDEAL study

 
Title Brave New World (song) 
Description A popular song written and recorded by two men living with dementia on the basis on IDEAL research. 
Type Of Art Composition/Score 
Year Produced 2022 
Impact Coverage on regional TV and radio. People affected by dementia sharing that it gives them hope. Co-produced with people living with dementia from Thred CIC, Liverpool. 
URL https://www.youtube.com/watch?v=vH9dKe4-_J0
 
Description We compared the experiences of people with dementia during the pandemic to IDEAL cohort data collected pre-pandemic. Participants perceived significant negative impacts on cognitive and functional skills and the ability to manage everyday activities, increased loneliness, discontinuity in sense of self, and a decline in perceived capability to 'live well'. Compared to pre-pandemic data there were lower levels of pain, depression and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighbourhood characteristics.

We then explored the impact of the pandemic over time by matching participants' data with that of IDEAL cohort participants who provided data on two occasions before the pandemic. We saw little impact of the pandemic on mental health or wellbeing but found that during the pandemic people with dementia were more likely to feel dissatisfied with their lives.

We conducted similar analyses for carers. During the pandemic carers were more optimistic and felt they coped well, but felt lonelier, more trapped in the caring role, and less satisfied with their lives. When comparing matched samples, during the pandemic carers appeared to cope better in their caring role.

These quantitative findings indicate considerable resilience on the part of people with dementia and carers during the pandemic. However, qualitative data provided additional insights. Findings from the first set of interviews highlighted loss of confidence, heightened anxiety, and a sense of neglect by services. News of vaccinations did not increase confidence about returning to normal. People still felt neglected and were not consulted about returning to services. Loss of social engagement made it hard to maintain a sense of identity.

The second set of interviews, conducted after vaccinations were introduced, showed that people with dementia continued to fear decline in skills and confidence due to lack of social connection or access to their usual support. Participants tried hard to stay socially connected. A shared, social identity was particularly important for people with young-onset dementia. Carers felt isolated from both family and professional support and reached the limits of their capacity to continue providing care.

The third set of interviews was conducted when the Omicron variant emerged. People with dementia wanted social contact but felt compromised by fears of infection and reduced social skills. Those who had difficulty accessing services and support were distressed, but those with access to good support networks coped better. Carers showed signs of burnout caused by increased caring demands, reduced respite, financial worries, and difficulties accessing health or social services. They relied on informal respite, but this was often precarious.

Efforts to mitigate negative impacts of the pandemic could focus on reablement to improve participation in everyday activities and on creating opportunities for social contact to reduce loneliness and to help reconnect people with their pre-COVID selves. Such efforts could build on the resilience demonstrated by people with dementia and carers.
Exploitation Route Pandemic-specific recommendations arising from the findings relate to highlighting the ongoing impact of service closures and restricted social contact on loneliness and isolation, and the threat to coping this represents. It is not sufficient or appropriate to expect people with dementia and carers to rely solely on informal support during emergencies such as the COVID-19 pandemic. Following an emergency situation such as the pandemic, it is essential that services are supported and funded to re-open promptly, and are as accessible as possible for people at all stages of their dementia journey.
Sectors Communities and Social Services/Policy

Healthcare

URL https://www.idealproject.org.uk/projects/include/
 
Description The findings from INCLUDE have secured impact through two main routes. First, they have contributed to understanding among policymakers and policy-focused reports and initiatives. Second, the resources developed in the study are being used by people with dementia and carers, health and social care practitioners, and community providers. Below we discuss each of these aspects in turn. 1. Policy into practice INCLUDE formed an important touchstone for policymakers seeking to understand how the pandemic affected people with dementia and carers. INCLUDE researchers were invited to present to the Department of Health and Social Care Dementia Programme Board twice (the second in March 2021). Findings were also presented to Alzheimer's Society in September 2020. INCLUDE's findings have also contributed to policy inquiries. We submitted evidence to the HM Treasury inquiry 'An equal recovery' inquiry (looking at financial recovery from the COVID-19 pandemic). This has since been published: https://committees.parliament.uk/writtenevidence/37232/html/. INCLUDE data formed a key strand of the Alzheimer's Society evidence submission to the Health and Social Care Select Committee inquiry on 'Clearing the [NHS] backlog caused by the pandemic' in September 2021. This evidence has been accepted and published online: https://committees.parliament.uk/writtenevidence/38533/html/. In September 2021 we submitted evidence to the Welsh Senedd's Health and Social Care Committee's consultation on 'Priorities for the Sixth Senedd'. This evidence has been published online: https://business.senedd.wales/documents/s118379/PSS52%20-%20IDEAL.pdf. We submitted evidence in collaboration with Sussex NHS Commissioners to the Health and Social Care Committee inquiry on 'The Future of General Practice'. This has been accepted and published online: https://committees.parliament.uk/writtenevidence/41684/pdf/. We submitted evidence to the Department of Health and Social Care's Major Conditions Strategy consultation in spring 2023. 2. Improving the experience of people living with dementia and carers: The Living with Dementia Toolkit https://livingwithdementiatoolkit.org.uk/ that we co-produced as part of INCLUDE has had 23,000 unique users so far since its launch in November 2021, and is promoted on several dementia websites. The Toolkit has also been accepted as a resource within the World Health Organisation's Global Dementia Observatory Knowledge Exchange Forum. While Toolkit users are primarily based in the UK, Google Analytics show there is good international engagement with users from 146 countries accessing the Toolkit website. The Living with Dementia Toolkit is also informing healthcare practices. We have had requests for (and duly sent) printed Toolkit materials out to GP services, memory clinics, older people's mental health teams and more across 20 ICBs and 5 Welsh Healthcare Boards. There has also been healthy demand for Toolkit materials from third sector and community-based organisations. We have distributed around 9,500 copies of the Guide to the Toolkit. The Toolkit is also being trialled as part of a new post-diagnostic offer within Oxleas Memory Service, in which newly diagnosed people are able to access three further appointments and helped to live with their dementia through tailored provision which draws on the Toolkit. We have also given invited presentations about the Toolkit to the NSFT South Norfolk Older Persons Community Team at their CPD meeting, the Torbay and South Devon NHS Foundation Trust Dementia Conference and at the Cambridge and Peterborough Foundation Trust's Dementia Conference - Building Knowledge in Dementia Care (World Alzheimer's Day 2022). Toolkit resources have been incorporated into further offers around dementia. For instance, the 'Museums Inspiring Memories' project led by Amgueddfa Cymru (Welsh National Museum) makes use of our 'Language and Heritage' videos. Meanwhile, we respond positively to local requests to incorporate the Toolkit into third sector training such as Bethpage's '6-session course entitled Living Well with Dementia' (a regional health and social care provider) and for Dementia Oxfordshire to use our 'Message for Carers' as part of sessions they run with family carers. Examples of what practitioners, people with dementia and carers said about the Living with Dementia Toolkit: "We would like to potentially give one Guide to every client diagnosed with dementia" (Assistant Psychologist in a Memory Service) "These toolkits are very comprehensive and very well received." (NHS Memory Link Worker) "I attended this Teams/Zoom conference today and I'll be honest, after lunch I was feeling a bit worn out with looking at the screen and not able to digest what was going on. Then we had our short break and then boom! You guys showed your smiling faces and filled our screens with warmth, sincerity and a wonderful amount of hope for people living with dementia. Be proud of yourselves. You are achieving beautiful things." (Dementia Support Worker, following a Toolkit presentation) "My wife and I took part in the IDEAL Programme. The Toolkit outcome is an excellent big step forward to help the cared for and carers, as they make their way through the dementia journey. So well done the research team." (Family carer) "The government seems to be focusing on diagnosing dementia, but carers need training in dementia care at that point - the Toolkit helps a lot" (Family carer) "I wanted to thank you for this Toolkit. Having being diagnosed with FTD last year and having to finish work. This is something that when I am reviewing and reading it, I do not get so depressed." (Person living with dementia)
First Year Of Impact 2021
Sector Communities and Social Services/Policy,Education,Healthcare
Impact Types Societal

Policy & public services

 
Description New post-diagnostic offer in Oxleas Memory Service using cognitive rehabilitation
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Contribution to new or improved professional practice
Impact Oxleas Memory Service are trialling offering 3 post-diagnostic appointments to newly diagnosed patients (who would have previously been discharged) in which the person with dementia is guided through My Life My Goals and cognitive rehabilitation principles with the aid of an Assistant Psychologist. They determine the goal of interest to that person and work on strategies to achieve it. My Life Questionnaire is administered at the start and end of the post-diagnostic programme and the person with dementia is introduced to the Living with Dementia Toolkit. This is a pilot to see how effective the scheme is and to measure uptake. If successful, it may be expanded. The workforce skill level is being improved through completing the GREAT eLearning and having supervision from a senior psychologist as this new offer is implemented.
 
Description ESRC Festival of Social Science 2021: Living Well with Dementia: Lessons Learned from COVID-19
Amount £920 (GBP)
Organisation University of Exeter 
Sector Academic/University
Country United Kingdom
Start 08/2021 
End 11/2021
 
Description Top-up funding for Identifying and mitigating the individual and dyadic impact of COVID-19 and life under physical distancing on people with dementia and carers (INCLUDE)
Amount £93,006 (GBP)
Funding ID ES/V004964/1 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 12/2021 
End 03/2022
 
Title Identifying and Mitigating the Individual and Dyadic Impact of COVID-19 and Life under Physical Distancing on People with Dementia and Carers, 2020-2022 
Description Archived INCLUDE datasets 
Type Of Material Database/Collection of data 
Year Produced 2022 
Provided To Others? Yes  
Impact The datasets are currently embargoed until July 2023 
URL https://reshare.ukdataservice.ac.uk/855800/
 
Description "Nobody seems to care": Dementia caregivers and COVID-19 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact A blog post by Dr Claire Pentecost and Sally Stapley about the research and interviews carried out from late 2021 to early 2022. The qualitative interviews explored the ongoing impacts of the pandemic for carers of relatives living with dementia.
Year(s) Of Engagement Activity 2023
URL https://www.transformingsociety.co.uk/2024/02/21/nobody-seems-to-care-dementia-caregivers-and-covid-...
 
Description 'The World Turned Upside Down' community film screening - Aberystwyth Arts Centre 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact In conjunction with the Centre for Ageing and Dementia Research (CADR), we ran a free public screening of our documentary film 'The World Turned Upside Down' at Aberystwyth Arts Centre cinema. Dr Cathy Charlwood from IDEAL and Prof Charles Musselwhite (CADR, Aberystwyth University) facilitated a discussion of the film's themes with the audience. IDEAL and CADR resources were distributed and Ceredigion Council had a stand to advertise local provision for carers. As a result of this event, 6 further local screenings are now planned or in planning across diverse regions of Wales. The audience reported changes in views such as "Very powerful film. Makes you realise how important it is to raise profile and create a better understanding of dementia. The film was a real inspiration and really makes you take a step back and think about how you talk about dementia. Definitely something I can utilise in Denbighshire as I think it is a great tool for getting people talking in an honest and open way." and "It's given me an understanding of dementia, one that I didn't know I was missing. I think when dementia comes up in my life, I will feel more equipped to not react emotionally, but to be there for the person and stay calm. It's also given me some hope in that there are people and places out there that want to help and can provide education on how and what to do. I also didn't know that dementia is different on a case-by-case basis."
Year(s) Of Engagement Activity 2022
 
Description Alzheimer's Society researchers taking on COVID-19 and dementia 
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 Podcast talking to three researchers supported by Alzheimer's Society working in dementia care research to find out about their work and how they have adapted it to also consider the impact of the pandemic on people affected by dementia. Claire Pentecost, Programme Manager for the IDEAL programme is one of the panellists and discusses in detail the IDEAL CDI project.
Year(s) Of Engagement Activity 2020
URL https://open.spotify.com/episode/18B2ntKxnDhdU7HDoL4OlH
 
Description Alzheimer's Society's Dementia Friendly Communities and Champions Webinar 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact Ccharlwood spoke about the 11-18-year-olds LILAC toolkit competition to over 140 representatives of the Dementia Friends around the UK. Participants agreed to share the information within their own networks and requested further information which CC passed to the webinar lead who sent it to the mailing list.
Year(s) Of Engagement Activity 2021
 
Description BAME sub - study used an example of under represented groups in research 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact The BAME sub-study within the IDEAL Covid-19 Dementia Initiative was referenced in correspondence from Helen Whately (Minister of State for Care) to an MP, with regards to how government is increasing diversity in dementia research. The BAME sub-study was given as an example of NIHR-funded research which actively recruited and involved under-researched groups and promoted diversity in dementia research.
Year(s) Of Engagement Activity 2021
 
Description Blog - Research Delivery Psychologist Paula Brown, shares her experience of working on dementia studies with Nottinghamshire Healthcare NHS Foundation Trust's Research Delivery Team. 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Blog - Research Delivery Psychologist Paula Brown, shares her experience of working on dementia studies with Nottinghamshire Healthcare NHS Foundation Trust's Research Delivery Team.
Year(s) Of Engagement Activity 2022
URL https://www.institutemh.org.uk/news/blog2/research-delivery-working-on-dementia-studies-my-personal-...
 
Description COVID dementia projects nominated for award 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Press release from UKRI concerning the two ESRC projects shortlisted for AlzSoc Dementia Hero Award in Research.
Year(s) Of Engagement Activity 2021
URL https://www.ukri.org/our-work/tackling-the-impact-of-covid-19/researching-the-impact-of-coronavirus/...
 
Description Cambridge and Peterborough NHS Trust's annual dementia conference 'Building Knowledge in Dementia Care' 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact "The Living with Dementia Toolkit advisory group spoke at the dementia conferences about the benefits of the toolkit. Feedback included: I love the energy exuding from the group. You are incredible!

You guys are brilliant as is the toolkit! Very well done to you all on such a great idea and resource

what a wonderful group of people you are. So inspiring. Cant wait to look through the toolkit.
I used to teach health and social care apprentices, this toolkit is also brilliant for them - plus nurse associates. Thank you for producing this, so good
Thank you. The positivity from you guys is amazing! Keep doing what you're doing!
"
Year(s) Of Engagement Activity 2022
 
Description DEEP Network celebration in Wales 'Loud and Proud about Dementia' 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Living with dementia Toolkits handed out at the celebration event for DEEP Network in Wales.
Year(s) Of Engagement Activity 2022
 
Description Dementia Research Chatathon: Involving People Living with Dementia in Research 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Dr Catherine Charlwood (IDEAL Research Translation Manager) and Dr Catherine Quinn (CI on IDEAL) took part in the Dementia Researcher Chatathon LIVE which was held on Friday 2nd December (a non-stop 12.5 hours livestream hosted by Adam Smith, interviewing 68 Dementia Researchers and Special Guests working across all areas of discovery to beat Alzheimer's disease and all forms of dementia). Their session was on the topic discussing involving people living with dementia in research and how this has worked for IDEAL. Dr Charlwood mentioned the Living with Dementia toolkit as a exemplary example of Co-Production.
Year(s) Of Engagement Activity 2022
URL https://www.dementiaresearcher.nihr.ac.uk/catch-up-dementia-research-charity-chatathon/
 
Description Exeter dementia research team are award finalists 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact Press release dual released by Exeter CMH and PenARC detailing INCLUDE being a finalist for the AlzSoc Dementia Hero Awards for Research 2021
Year(s) Of Engagement Activity 2021
URL http://medicine.exeter.ac.uk/news/articles/exeterdementiaresearchtea.html
 
Description How to stay well during the Coronavirus Outbreak: 5 key messages for carers 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact "A 6 page leaflet produced for people living with dementia with tips to make things more manageable throughout lockdown during the Coronavirus outbreak. Building on findings from the 'Improving the experience of Dementia and Enhancing Active Life' research programme, the team has produced a leaflet for people with dementia, which will also be helpful for their family members or other supporters providing unpaid care. The leaflet is funded by the National Institute for Health Research (NIHR), in a project led by the University of Exeter and the NIHR Older People and Frailty Policy Research Unit, with partners including Alzheimer's Society, Manchester University, Bradford University and Brunel University London.

Feedback

Many thanks for sharing this leaflet, it really is superI will ensure that we make this really helpful leaflet available on our website and alert Carers to it. Jean Tottie, Director, TiDE. https://www.tide.uk.net/resources/impact-of-covid-19-lockdown/

All responses have been immensely positive and folk are sharing it in a similar manner to its earlier ""cousin"" (5 key messages for people living with dementia). Keith Oliver, Alzheimer's Society Ambassador.
Year(s) Of Engagement Activity 2020
URL http://www.idealproject.org.uk/covid/carer/
 
Description IDEAL CDI briefing with Alzheimer's Society 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Dissemination of the first findings of the IDEAL CDI study to Alzheimer's Society, A strand of work funded by the NIHR examining the impact of COVID-19 on the health and wellbeing of people affected by dementia. The meeting was to discuss the likely policy implications and opportunities for further dissemination. Involved in the meeting were Alzheimer's Society personnel from the communications, policy, public affairs, campaigns and knowledge teams. Findings will be used to used to develop the Living Well Alongside COVID (LILAC) toolkit of resources.
Year(s) Of Engagement Activity 2020
 
Description IDEAL Webinar 1: Using the Living with Dementia Toolkit after diagnosis 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The first in IDEAL's webinar series introduced the Living with Dementia Toolkit with a particular focus on using it after diagnosis (since the event was part of Dementia Action Week and the theme was 'diagnosis'. A varied audience including NHS workers and even Commissioners attended and engaged via the Q&A. 4 members of the toolkit co-production team attended and we've had requests for toolkit materials as a result of the session.
Year(s) Of Engagement Activity 2022
URL https://www.youtube.com/watch?v=gjGhzR0I9Ao
 
Description Improving Services for People Living with Dementia Digital Conference 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact From a timely diagnosis to integrated support, the half-day digital conference shared multi-agency case studies from a range of service providers who bridge the gap between housing, health, social care and voluntary sector services. Four members of the IDEAL team including two from the IDEAL PPI group, co presented, talking about the LIVING with Dementia Toolkit.
Year(s) Of Engagement Activity 2022
URL https://www.westminsterinsight.com/events/improving-services-for-people-living-with-dementia-digital...
 
Description Leaflet: How to stay well during the Coronavirus Outbreak: 5 key messages for people living with dementia. 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact "A 6 page leaflet produced for people living with dementia with tips to make things more manageable throughout lockdown during the Coronavirus outbreak. Building on findings from the 'Improving the experience of Dementia and Enhancing Active Life' research programme, the team has produced a leaflet for carers of those living with dementia. The leaflet is funded by the National Institute for Health Research (NIHR), in a project led by the University of Exeter and the NIHR Older People and Frailty Policy Research Unit, with partners including Alzheimer's Society, Manchester University, Bradford University and Brunel University London. Disseminated widely and referenced by practitioners and government. Also translated into Welsh.

Feedback

From members of the public:
I wonder whether it might be possible to have a copy of the leaflet sent to [my dad]? He is finding the whole situation really difficult and I am finding it hard not being with him.
The Chair of Southwark pensioners whose mother is living with dementia 'thought that the leaflet was very useful and has circulated it to her contacts in South London'.

From NHS colleagues:
The leaflet has been recommended to services across the south-west after being mentioned in a Dementia Implementation Group. This led to follow-up contact from services, for example a request from a Principal Psychologist in Cornwall NHSFT.

Following translation into Welsh:
Mae hwnna'n bamffled bach da dydi. Hawdd i'w ddefnyddio i'r tymor hir - pan fydd y Covid wedi pasio - achos mae'n crynhoi y 5 ffordd at lesiant mewn ffordd syml. [It's a good little pamphlet, isn't it. Easy to use in the long term - when Covid has passed - because it summarises the 5 ways to wellbeing in a straightforward way.] Wellbeing Team Leader,
"
Year(s) Of Engagement Activity 2020
URL http://www.idealproject.org.uk/covid/carer/
 
Description Living Well with Dementia: Lessons Learned from COVID-19 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact An event as part of the ESRC Festival of Social Science to launch the Living with Dementia Toolkit and to disseminate findings from our COVID-19 work in an accessible manner.
Year(s) Of Engagement Activity 2021
URL https://festivalofsocialscience.com/events/living-well-with-dementia-lessons-learned-from-covid-19/
 
Description Living with Dementia Toolkit was accepted on the World Health Organisation, Global Dementia Observatory, Knowledge Exchange platform website. 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact The GDO KE platform is accompanied by the GDO data portal which collates and disseminates data from Member States on 35 key dementia indicators to support evidence-based service planning and strengthening of policies as well as health and social care systems. The living with dementia toolkit features.
Year(s) Of Engagement Activity 2022
URL https://globaldementia.org/en/resource/living-with-dementia-toolkit
 
Description Living with Dementia toolkit presentation at the Aberaeron Forget me Knots Group 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Living with Dementia toolkit presentation at the Aberaeron Forget me Knots Group.
Year(s) Of Engagement Activity 2022
 
Description Living with dementia toolkit in the 3 nations dementia working group magazine 
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 Keith Oliver, one of the co -producers of the toolkit wrote an article about the merits of the toolkit, for the Alzheimer's Society 3 Nations Dementia Working Group monthly newsletter.
Year(s) Of Engagement Activity 2022
URL https://email.alzheimers.org.uk/t/57EL-LKRL-F3C6C4D60028E21B4QIZY4DECB31C7FB71271B/cr.aspx
 
Description Members of Living with Dementia Toolkit Toolkit involvement group met Health and Social Care students from South Devon UTC 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Schools
Results and Impact Five members of the Living with Dementia Toolkit involvement group met on Zoom with 16 Year 12 Health and Social Care students from South Devon UTC. The students got the opportunity to ask questions about dementia and have them answered by these experts by experience.

The teacher emailed CCharlwood afterwards to say that 'the main takeaway for my students seems to be how the emotions remain even as the memories disappear, and I think that is a brilliant thing for them to remember as they go forward'.
Year(s) Of Engagement Activity 2022
 
Description Newsletter: IDEAL February 2021 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Newsletter to IDEAL participants updating them on programme progress for IDEAL and INCLUDE, next steps and publications using the data from IDEAL.
Year(s) Of Engagement Activity 2020
 
Description Now that COVID restrictions are gradually lifting, what's next for dementia research? 
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 Professor Alistair Burns wrote about the impact of the COVID pandemic on dementia research and mentions IDEAL as a study incorporating research about the pandemic and the effect it has on people feeling isolated.
Year(s) Of Engagement Activity 2021
URL https://news.joindementiaresearch.nihr.ac.uk/now-that-covid-restrictions-are-gradually-lifting-whats...
 
Description One year on: South West businesses and researchers in the battle against COVID-19 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A press release from UKRI about how publicly funded researchers and businesses in the South West are making a huge difference in tackling COVID- 19. Featuring a synopsis of the INCLUDE study, the release mentions how the questionnaires completed by carers and people living with dementia are being used alongside existing data to better understand the impact on symptoms and wellbeing.
Year(s) Of Engagement Activity 2021
 
Description Presentation at ADI2022: ': Translating research and experience: Co-producing the Living with Dementia Toolkit' 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation at the 35th ADI Conference in London. International audience in the room, with the presentation live streamed to online delegates and then available as on-demand content. 4 members of the toolkit co-production group spoke about the Living with Dementia Toolkit. Delegates took toolkit materials with them, tweeted the presentation and commented on how vibrant the toolkit looked and that it was different to hear about the process of co-production and how the project was shaped by the feedback of people living with dementia and carers.
Year(s) Of Engagement Activity 2022
URL https://adiconference.org/files/general/ADI-2022-Conference-programme-Final.pdf
 
Description Presentation: L Clare gave a conference presentation at Hong Kong University's 'Intervention & Prevention of Neurodegenerative Disease: Building Resilience ' conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Professor Linda Clare shared IDEAL's recent findings and emerging evidence from INCLUDE. IDEAL's data was deemed an important consideration as the Hong Kong Greater Bay Area (GBA) seeks to establish its own dementia strategy.
Year(s) Of Engagement Activity 2021
URL https://ipndgba.edu.hku.hk/
 
Description Presentation: L Clare gave the Annual Manchester Institute for Collaborative Research on Ageing (MICRA) Lecture. ''Living well' with dementia before, during and after COVID-19' 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Professor Linda Clare shared IDEAL's recent findings and emerging evidence from INCLUDE.
Year(s) Of Engagement Activity 2021
 
Description Presenting My Life, My Goals and the Living with Dementia Toolkit to the Memory Assessment Services (MAS) Wales forum 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact We were invited to speak at this national forum comprising staff from all of the memory assessment services across Wales. Many other people attend this group including Improvement Cymru, Social Care Wales and patient and carer advocacy groups. We related news of My Life, My Goals and the Living with Dementia Toolkit and took questions from interested parties. Lots of different services requested copies of the toolkit materials and wanted to follow-up. MAS Wales have also invited us to be part of their national forum going forwards as a result of this presentation.
Year(s) Of Engagement Activity 2022
 
Description Race Equality Foundation: Advise for People with dementia and carers leaflets translated 
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 IDEAL CDI 6 page guide on helping people living with dementia and their carers during lockdown has been translated into a variety of languages by the Race Equality Foundation. These languages are: Arabic, Bengali, Chinese, Gujarati, Kurdish, Punjabi, Portuguese, Polish, Somali and Urdu. Leaflets sent to the 21 organisations who participated in the Race Equality Foundation dementia programme. Together Dementia Support, Manchester , Black Health Initiative, Centre of Wellbeing, Training and Culture, Subco, Nubianlife, Nyabingi Charity, AmbaCare, BME Health Forum, London, Brent Youth Radio, Culture Dementia, Stanmore, African Caribbean Care Group, Bristol and Avon Chinese Women's Group, Wai Yin Society, Malcolm X Centre
Year(s) Of Engagement Activity 2020
URL https://raceequalityfoundation.org.uk/health-care/covid-19-translated-materials-resources/
 
Description South Norfolk Older Persons Community Team - CPD session 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact "Dr Catherine Charlwood, IDEAL's Research and Translation Manager spoke to South Norfolk Older Persons Community Team within Norfolk and Suffolk NHS Trust to speak on the Living with Dementia Toolkit for their CPD session. A really positive session. Comments: Really liked that there were times on the videos, so you can plan when to watch
• thought it was really important to hear the voices of people living with dementia and carers (and hearing them laughing!)
• asked if they could print things out - I encouraged this!
• A Consultant liked the fact that this gave a general overview and then they could focus on sharing information about region-specific services i.e. clinics and groups that exist on the ground there.
• they've requested toolkit materials and the manager from the North Norfolk team wants to invite Catherine to speak to them.
"
Year(s) Of Engagement Activity 2022
 
Description UKRI COVID ideas scheme speakers and panel discussion. Focus on interdisciplinary response to global challenges such as Coronavirus. 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Prof. Linda Clare was part of a University of Exeter event on the Covid -19 Social Science Rapid response research funded by ESRC. Professor Linda Clare spoke on Identifying and mitigating the individual and dyadic impact of COVID-19 and life under physical distancing on people with dementia and carers (INCLUDE).
Year(s) Of Engagement Activity 2020
 
Description Worst Hit: Dementia and Coronavirus - policy report 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Findings have fed into this report, which has been widely used within policy and influencing activity to shine a light on the challenges people with dementia have been facing in receiving support from health and social care during the pandemic.
Year(s) Of Engagement Activity 2020
URL https://www.alzheimers.org.uk/sites/default/files/2020-09/Worst-hit-Dementia-during-coronavirus-repo...