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.
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
Stapley S
(2023)
Living with dementia during the COVID-19 pandemic: insights into identity from the IDEAL cohort
in Ageing and Society
Dawson E
(2023)
Navigating the coronavirus pandemic 2 years on: Experiences of people with dementia from the British IDEAL cohort.
in Dementia (London, England)
Sabatini S
(2022)
Minimal Impact of COVID-19 Pandemic on the Mental Health and Wellbeing of People Living With Dementia: Analysis of Matched Longitudinal Data From the IDEAL Study.
in Frontiers in psychiatry
Pentecost C
(2022)
Effects of social restrictions on people with dementia and carers during the pre-vaccine phase of the COVID-19 pandemic: Experiences of IDEAL cohort participants.
in Health & social care in the community
Quinn C
(2022)
Impact of COVID-19 on carers of people with dementia in the community: Findings from the British IDEAL cohort.
in International journal of geriatric psychiatry
Gamble LD
(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.
in Journal of Alzheimer's disease : JAD
| 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 | In the first quantitative paper on the experiences of people with dementia we benchmarked their responses against data from the whole IDEAL cohort collected before the pandemic. Participants perceived significant negative impacts on cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and 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 on our respondents in more detail using data they provided both before and during the pandemic; we matched them with IDEAL participants who provided data on two occasions before the pandemic and compared how responses changed over time for these two groups. 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 to explore the experience of carers. When compared to pre-pandemic data for the whole IDEAL cohort, during the pandemic carers were more optimistic and felt they coped fairly 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 and feel more competent in the caring role. These quantitative findings indicate that standardised measures identify considerable resilience on the part of people with dementia and carers during the pandemic. However, the qualitative data provide insights into the challenges people experienced and the concerns that preoccupied them. In our previous response we described the findings from the first set of interviews. The second set, conducted after the vaccine roll-out was introduced, showed that people with dementia continued to fear decline in skills and were affected by loss of confidence and loss of social connections, augmented by ongoing lack of access to their usual support options. Carers felt isolated from both family and professional support, and as their own needs were not being met, were on the verge of burnout and at the edge of their capacity to continue providing care. The third and final round of interviews was conducted during the emergence of the Omicron variant. People with dementia wanted to stay occupied but still felt unprepared to mix in public because of COVID-19 fears and reduced social skills. Difficulties with the availability, accessibility or suitability of groups and services caused distress, but those with access to good support networks coped better. Carers showed signs of burnout caused by increased caring demands, difficulties getting formal respite and difficulties accessing health financial or social services. Carers relied on help from local volunteers, friends, and family to return to their own interests and responsibilities outside of their caring role, but this was often precarious. |
| Exploitation Route | Pandemic-specific recommendations arising from the findings relate to highlighting the ongoing impact of stoppages and closures of services and limited social contact on loneliness and isolation, and a treat to coping. Reliance on informal support for people with dementia and carers during times of a pandemic is not adequate or appropriate. As post pandemic support and services did not return to 'normal' it is essential services are funded and re-opened, and designed to be 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 | 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/. Improving things for 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 25,000 interactions 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 72 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 several NHS Trusts 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 7,500 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 and at the Cambridge and Peterborough Foundation Trust's Dementia Conference - Building Knowledge in Dementia Care (World Alzheimer's Day 2022). |
| First Year Of Impact | 2021 |
| Sector | Communities and Social Services/Policy,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 | 09/2021 |
| 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 | '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... |