The impact of multicomponent support groups for those living with rare dementias

Lead Research Organisation: University College London
Department Name: Institute of Neurology

Abstract

We will carry out the first major study of the value of support groups for people living with or caring for someone with a rare form of dementia. We will be looking at the benefits of meeting other people living with a similar condition, and sharing practical and emotional support.

We will do this with the help of over 1000 members of the Rare Dementia Support network (www.raredementiasupport.org) by:
(a) Conducting telephone-based interviews with support group members across the UK and Canada
(b) Understanding how different types of support group help different people with different dementias at different times in their journey with dementia
(c) Developing new ways for capturing whether support groups are effective
(d) Following new members of our support group network over 2-4 years to see what works, what doesn't, what types of information and support are helpful, and when is that help needed
(e) Testing out a new online video-based support forum designed with, by and for people caring for someone with a rare dementia called frontotemporal dementia (FTD)
(f) Determining how cost-effective different types of support group are compared with other kinds of service
(g) Training up healthcare professionals and researchers to recognise the needs of people with rare dementias, and to learn what benefits this training may have for their work with people with more common dementias

This is important because around a quarter of people with dementia have one of the less common forms (not typical Alzheimer's disease or vascular dementia). These rare dementias are more common in young people (under 65 years old), who are often still having to manage work, childcare and a mortgage. Getting a diagnosis is often difficult and slow, and the services available once you do often do not meet people's needs. In particular, general support groups and dementia cafes often do not feel relevant as other people attending are often much older, are in a different situation and have different symptoms. Support groups involving both professionals and people living with dementia may be an important part of delivering on the PM's Dementia Challenge 2020 objective of 'Every person diagnosed with dementia having meaningful care following their diagnosis, which supports them and those around them'.

Planned Impact

Individuals and groups who will benefit from this research (and how) include:
- People at risk of, living with and/or caring for someone with a rare, atypical or young onset dementia.
- Dementia advisors, social workers, healthcare staff, occupational therapists, psychologists, nurses, psychiatrists, neurologists, eye health specialists and many other professionals working with people affected by a rare dementia.
- Dementia charities and support organisations with limited specialist knowledge of how best to support people affected by a rare dementia.
- PLWD, carers and professionals outside the UK interested in setting up or developing support services for people with a rare dementia.
- Residential and care home staff and managers caring for people in the advanced stages of a rare dementia.
- Palliative care staff working with people with a rare dementia at the end of their lives.
- Services for people with all dementias as non-memory symptoms and challenges may emerge in many individuals with common dementias as their condition progresses.
- Students, trainee professionals and family and friends of people with any dementia wanting to understand more about different dementias.
- Policymakers, commissioners and service providers trying to understand and provide for the needs of all people with dementia.
- Health economists and academics trying to understand the value and contribution of peer support and peer-to-peer learning, in combination with or independent from professional support services.

The ways in which the above individuals and groups will benefit from this research include:
Improved understanding of the long-term care and support needs in each specific condition, including the typical timing and order of these care events, e.g.
- People affected by rare dementias being helped to adjust, anticipate and plan for the future.
- Service providers planning for future needs.
- Dementia charities and support organisations being able to provide more appropriate, tailored information and advice.
- Residential, care home and palliative staff being able to tailor care and have increased confidence in their ability to meet the particular needs of people with rarer dementias.
Improved understanding of the mechanisms and processes by which support group can be of benefit, e.g.
- Helping more people to find and decide to access services that may be right for them.
- Providing policymakers, commissioners and service providers with the evidence required to facilitate decision making about service provision in their area.
Improving access to group support through innovative online services, e.g.
- PLWD and carers in other countries, those living in remote locations or those for whom circumstances make face-to-face meeting infeasible.
- For healthcare professionals to have high-quality services to signpost people to.
Improving awareness that multicomponent support groups provide a valuable, continuous and cost-effective means of support which can be adopted in different settings, e.g.
- Initiating support groups for communities of people with dementias for which there have been no opportunities to meet others in a similar situation.
Improving the research tools and methods available for capturing the impact of multicomponent support groups.

What will be done to ensure that they have the opportunity to benefit from this activity?
- Ensuring continued ease of access (including self-referral) and openness to everyone (PLWD and carers; people at different stages of dementia).
- Increased provision of non-London based support, including through partnerships with national and international support providers.
- Provision of new online support groups to enable access from anywhere.
- Translation of rare dementia condition-specific information and website resources iinto different languages.
- Provision of high-quality, easily accessible online information and training resources.
 
Title A Life in the Day of PCA (Poetry Book) 
Description An illustrated poetry book developed by Charlie Harrison and 2 RDS members 
Type Of Art Creative Writing 
Year Produced 2022 
Impact Amplifying the voices of people living with Posterior Cortical Atrophy and rasing awareness 
 
Title Another Presence - a film about dementia, hallucinations and altered perceptions 
Description A new short film about dementia with Lewy Bodies produced, directed and nimated by Simon Ball in collaboration with Dr Rimona Weil ( 
Type Of Art Film/Video/Animation 
Year Produced 2022 
Impact Another Presence recounts the unique and often curious experiences of people living with dementia with Lewy bodies (DLB), the third most common form of dementia in the UK. A multi-sensory condition that can cause dream-like symptoms, it's a condition like no other. Told through the testimonies of those living with DLB, the film explores the surreal and lesser known effects of dementia, compelling us to question how our brains function and to what extent we can trust our senses. 
URL https://anotherpresencefilm.com/
 
Title Dementia and US - BBC Documentary 
Description A groundbreaking two-part series for following four people with dementia and their families over the course of two whole years. 
Type Of Art Film/Video/Animation 
Year Produced 2021 
Impact Raising awareness about living with a dementia daignosis 
URL https://www.bbc.co.uk/programmes/m0010cmh
 
Title Research poems (team) (November 2020) 
Description Research poetry produced by the research team to reflect the 1/3 way mark of the project 
Type Of Art Creative Writing 
Year Produced 2020 
Impact Understanding of research methdology, learning applied to data collection and analysis of participant research poems 
 
Title Research poems (team, January 2019 and January 2020) 
Description The outputs are two research poems, co-authored by all members of the research team at the beginning of the study and at the end of the first year, as a pilot for the research poetry sessions the team will run with study participants. Like any written text, research poems can be analysed qualitatively (using e.g. thematic analysis) or quantitatively (e.g. content analysis). Using poems for research purposes is another method to get at experience--often an indirect way as opposed to interviews but a powerful one. 
Type Of Art Creative Writing 
Year Produced 2020 
Impact Pilot research poetry sessions with RDS support group members 
 
Title Research poems x36 (2021) 
Description Research poetry produced by the research team 
Type Of Art Creative Writing 
Year Produced 2021 
Impact Understanding of research methodology, learning applied to data collection and analysis of participant research poems 
 
Title Scientific advisors on Supernova (2020) 
Description Supernova is a 2020 British drama film written and directed by Harry Macqueen. The film stars Colin Firth and Stanley Tucci. The film tells the story of Sam and Tusker, partners for 20 years, who travel across England to the Lake District, reuniting with friends and family following Tusker's diagnosis with early onset dementia. 
Type Of Art Film/Video/Animation 
Year Produced 2020 
Impact The director, screenplay and actors were influenced by the experiences of members of the PCA Support Group and associated researchers. 
URL https://www.imdb.com/title/tt11169050/
 
Title Scientific and lived experience advisers on Help film (Channel 4, 2021) 
Description Members of the new RDS young onset Alzheimer's disease support group, together with RDS team members, met with the director, writer and stars of the upcoming Channel 4 film Help, starring Stephen Graham and Jodi Comer, about the relationship between a young care worker and a care home resident with young onset Alzheimer's disease at the time of the Covid-19 pandemic. 
Type Of Art Film/Video/Animation 
Year Produced 2021 
Impact The film is yet to be released but will likely shape public perceptions around young onset dementia and support needs. 
URL https://www.channel4.com/press/news/channel-4-announces-jack-thornes-help-wt-starring-stephen-graham...
 
Description The Rare Dementia Support (RDS) Impact study is now well-established. By the end of 2021, more than 350 people had made more than 1,000 separate contributions to and participations in our research, across both our planned workstreams and formal interviews and additional online surveys and other evaluations of support service usage and impact. A number of studies and outputs have been published, including the study protocol paper (Brotherhood et al., 2020), reports on the impact of Covid-19 upon individuals with typical and atypical dementias (Suarez Gonzalez et al., 2020), and articles on the benefits of participation in trials (Harding et al., 2021) and informal patient and public involvement in inspiring research (Crutch et al., 2020). The growth in RDS membership has also continued (60% rise in 2020; currently >3700 members with ~40 new members per week) with our Covid-19-related shift to online services yielding more than 450 large, regional and small support group meetings delivered in the past 12 months. Adaptations to the study protocol blending service evaluation and formal research, and the introduction of novel evaluation methods (e.g. linguistic and facial emotion recognition analysis), have created further opportunities to enhance the Impact study and to understand online, in person and hybrid peer support behaviour following the pandemic.
Exploitation Route We anticipate the multimodal evaluations of mixed peer and professional support will provide examples of best practice and novel evaluation methodologies applicable to understanding and improving the impact of other mixed peer-professional support services for others with longterm health conditions.
Sectors Healthcare

URL https://www.raredementiasupport.org/research/
 
Description The research project has already led to a number of tangible impacts, including: • Growth in the RDS service and membership, and findings shaping an overhaul of the content of the RDS website (which already has >40,000 users from 144 different countries per year) to reflect study findings and practical and emotional strategies learned through our interviews with people living with a rare dementia. • Enhanced recognition of atypical, inherited and young onset dementia at a national level (e.g. reflected in RDS being invited to join One Dementia Voice, a collaboration of nine dementia charities and organisations driving change in dementia support) • Stronger direct partnerships with larger all-dementia charities (e.g. direct referral pathways, staff training sessions and joint evaluations established with Alzheimer's Society) • Identification of differences in referral pathways for individuals with typical and atypical dementias, and consultation on improvements in integration between local and national general and specialist clinical and support services (working with the National Neurosciences Advisory Group). • Use of digital mapping research tools to trace all websites, blogs and forums internationally that point towards the RDS website domain, in order to map our global impact and identify audiences with whom future outputs of the research study can be shared. • Innovative elements of the research methodology are already impacting wider public audiences (e.g. a collection of poetry, 'There Is So Much I Could Say,' written by people with rarer forms of dementia who participated in our research poetry project, with planned coverage in broadcast and social media, live events, and with the research protocols already published so similar work can be undertaken with different healthcare audiences). • Collaborations with another of the ESRC-NIHR dementia care research programme grant teams - the EMBED-Care team - to develop and deliver a new pre-bereavement grief and loss intervention which is already being delivered to RDS members and its impact evaluated. • Our Canadian Co-I Prof Mary Pat Sullivan has recently received $400,000 from the Hilary and Galen Weston Foundation for a pilot scheme to establish the first rare dementia support service in Canada (https://www.nipissingu.ca/news/2022/hilary-galen-weston-foundation-grants-400000-nipissing-university-establish-rare). • Energy around the RDS Impact research programme has also contributed to progress with our plans to create a world-first Rare Dementia Support Centre, with >£1m in pledges and donations already secured by our charity partner, The National Brain Appeal.
First Year Of Impact 2001
Sector Communities and Social Services/Policy,Education,Healthcare
Impact Types Cultural,Policy & public services

 
Description BPS Psychosocial intervention, "Specialist support (rare dementias)"
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact Providing updated and detailed information about rare dementias for dissemination among members of the British Psychological Society
 
Description MSc Dementia course (RDS in course content)????
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
Impact XXXXX
 
Description Meeting with 7 MPs and journalist Lauren Laverne to support Music for Dementia campaign
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
 
Description Rapid Response: Impact of COVID-19 on people living with dementia: emerging international evidence
Geographic Reach Multiple continents/international 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
Impact Rapid response to Covid-19 and lack of linked datasets for care homes (BMJ 2020;369:m2463), outlining the need to mitigate the impact of COVID-19 on people with dementia and providing high-level oversight of potential mitigating actions.
URL https://www.bmj.com/content/369/bmj.m2463/rr-0
 
Description Rapid Response: Non-memory led dementias, risk of infection and care in the time of COVID-19
Geographic Reach Multiple continents/international 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
Impact Rapid Response: Letter to the Editor of the British Medical Journal in response to initial article by Carter et al. ("Covid-19: The support UK care homes need to survive"). Outlining particular challenges faced by people living with and caring for someone with a rare dementia during the pandemic, especially during periods of lockdown as advised by the UK government throughout 2020.
URL https://www.bmj.com/content/369/bmj.m1858/rr
 
Description Rare Dementia Clinical-Research Network (RD-CRN) & Newsletters - Issue 1-2
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
Impact The developing RD-CRN seeks to encourage peer support for those interested in rare dementia related clinical research. This could include support for developing research projects for clinical doctorate trainees to undertake at different organisations across the UK; opportunities to interact with peers to encourage and support researchers new to this area; sharing dissemination of emerging research in rare dementia support; and new support initiatives that are research informed. Our aim is that young academics, research students and clinicians who are working directly with people living with rarer forms of dementia will benefit from the clinical research network by having the opportunity to share research findings and practice and learn from the expertise within this and the three other funded research project teams to enrich their knowledge base around providing tailored individualised support to people living with a form of dementia.
URL https://drive.google.com/drive/folders/1hDhqEHkW0cxw4AOb66rKL7PaG7rMSFl4
 
Description Workshop on rare dementia to counselling students
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
Impact Workshop on rare dementia to counselling students delivered by Rare Dementia Support Impact team member; aiming to highlight particular challenges for people living with a rare form of dementia, highlighting the Rare Dementia Support service and Impact study
URL https://www.lambethcollege.ac.uk/about-us/news/1043-nikki-zimmermann-delivers-a-presentation-on-deme...
 
Description Barclays 100x100 UK COVID-19 Community Relief Fund
Amount £100,000 (GBP)
Organisation Barclays 
Sector Private
Country United Kingdom
Start 09/2020 
End 03/2021
 
Description National Lottery Community Fund
Amount £59,962 (GBP)
Organisation National Lottery 
Sector Private
Country United Kingdom
Start 09/2020 
End 03/2021
 
Description RDS Impact top up funding: Enhancing the reach (diversity and international) of the RDS Impact study
Amount £247,358 (GBP)
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 09/2021 
End 03/2022
 
Description Supporting people with rare dementias from under-represented communities
Amount £100,000 (GBP)
Organisation Mercers Company 
Sector Charity/Non Profit
Country United Kingdom
Start 09/2021 
End 09/2024
 
Description Atypical Alzheimer's Disease and Associated Syndromes Professional Interest Area 
Organisation Alzheimer's Association
Country United States 
Sector Charity/Non Profit 
PI Contribution Set-up and chair the ISTAART Atypical AD PIA.
Collaborator Contribution Opinion on revising PCA diagnostic criteria and genetic samples for PCA GWAS study.
Impact Crutch SJ1, Schott JM, Rabinovici GD, Boeve BF, Cappa SF, Dickerson BC, Dubois B, Graff-Radford NR, Krolak-Salmon P, Lehmann M, Mendez MF, Pijnenburg Y, Ryan NS, Scheltens P, Shakespeare T, Tang-Wai DF, van der Flier WM, Bain L, Carrillo MC, Fox NC. Shining a light on posterior cortical atrophy. Alzheimers & Dementia 2013 Jul;9(4):463-5. doi: 10.1016/j.jalz.2012.11.004..
Start Year 2012
 
Description EMpowering Better End of life Dementia Care (EMBED-Care Programme), ESRC/NIHR Dementia Initiatives research project 
Organisation King's College London
Department Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation
Country United Kingdom 
Sector Academic/University 
PI Contribution Serve on the PPI Steering Group Panel for EMBED-Care; sharing experiences from Rare Dementia Support, Dementia Research Centre, UCL as a member of the RDS team as well as lived experience as carer for partner who had a rare dementia.
Collaborator Contribution EMBED-Care is a ESRC/NIHR Dementia Initiative granted in January 2019 as a 5-year research project undertaken by Marie Curie Palliative Care Research Department, University College London and Cicely Saunders Institute, Kings College London. We will generate a step-change in how care is provided for people with dementia. We will spark public conversation on dying with dementia, engage the public in our work by combining art and science and develop a new tool to maximise quality of life (QoL) and meet individual needs, regardless of age or type of dementia. One in three of us will die with dementia. It is the commonest cause of death in the UK. By 2040, 220,000 people will die with dementia each year. Distressing symptoms like pain and agitation are common. Policymakers and managers lack solutions to improve delivery of holistic person-centred care and information to plan future services. Access to good care for people with dementia towards end of life is highly unequal. First, we create a network of collaborators, clinicians, policy makers, patients and families. This network will aid our engagement and dissemination at all stages and provide a platform for our research. Our research comprises 6 projects (called workstreams, WS).We use these to build, develop and test a model of integrated palliative dementia care, meaning palliative care is a vital part of dementia care across services.
Impact WS1: Understanding policy and developing a programme framework. Palliative care aims to maximise QoL through careful assessment and person-centred care. We will review the literature to develop a framework of palliative dementia care. This helps us choose study outcomes and analyse data (WS2-4), and measure if our intervention makes a difference (WS5-6).We will review if it meets the needs of people affected by dementia, and how well it supports palliative dementia care, continuity of care and maximised comfort. We will build a case to inform policymakers what staff, skills and types of care are needed in the future. WS2: Understanding inequality, current and future population need. We will use data collected routinely as part of clinical care, linked across hospital and home to understand when, why and how often people move between care settings. Results will help plan services, direct policy and inform public opinion. Combined with WS1 data, we will project future need to build a case for better care. WS3: Unmet needs and care provision in dementia towards the end of life. We will follow people with dementia who may be nearing end of life and their carers for 9 months, checking them every 3 months for distressing symptoms, unmet health, psychological or social needs and services used. This will tailor our intervention in WS5 to what is important to the person and those close to them. We include people with young onset and prion dementias and their carers to understand these neglected groups. WS4: Bringing our findings together to design the intervention. We will review findings from WS1-3 to compile a decision-making matrix that helps patients, carers and health care workers match care needs to palliative treatments. We will combine this matrix with the Integrated Palliative Outcome for Dementia (IPOS-Dem) to support staff to identify health and social needs, and a tool to aid decision-making for staff and carers to provide the right care, at the right time in the right place. This will form the basis for our EMBED-Care intervention designed in WS5. WS5: Co-design of a new model of palliative dementia care. The intervention will empower staff and carers to assess and monitor needs and concerns, and support decision making to manage distressing symptoms by providing the right care. It will maximise comfort and bridge moves between settings, providing seamless care. It is person-centred and tailored to individual goals of care. We will develop training packages for staff, and work with a technology company to enable remote monitoring. WS6: Testing the new model of care. We will check how well this works, using paper and online system, across care homes and at home to ensure it is practical, feasible and useful.
Start Year 2019
 
Description EMpowering Better End of life Dementia Care (EMBED-Care Programme), ESRC/NIHR Dementia Initiatives research project 
Organisation University College London
Department Marie Curie Palliative Care Research Department
Country United Kingdom 
Sector Academic/University 
PI Contribution Serve on the PPI Steering Group Panel for EMBED-Care; sharing experiences from Rare Dementia Support, Dementia Research Centre, UCL as a member of the RDS team as well as lived experience as carer for partner who had a rare dementia.
Collaborator Contribution EMBED-Care is a ESRC/NIHR Dementia Initiative granted in January 2019 as a 5-year research project undertaken by Marie Curie Palliative Care Research Department, University College London and Cicely Saunders Institute, Kings College London. We will generate a step-change in how care is provided for people with dementia. We will spark public conversation on dying with dementia, engage the public in our work by combining art and science and develop a new tool to maximise quality of life (QoL) and meet individual needs, regardless of age or type of dementia. One in three of us will die with dementia. It is the commonest cause of death in the UK. By 2040, 220,000 people will die with dementia each year. Distressing symptoms like pain and agitation are common. Policymakers and managers lack solutions to improve delivery of holistic person-centred care and information to plan future services. Access to good care for people with dementia towards end of life is highly unequal. First, we create a network of collaborators, clinicians, policy makers, patients and families. This network will aid our engagement and dissemination at all stages and provide a platform for our research. Our research comprises 6 projects (called workstreams, WS).We use these to build, develop and test a model of integrated palliative dementia care, meaning palliative care is a vital part of dementia care across services.
Impact WS1: Understanding policy and developing a programme framework. Palliative care aims to maximise QoL through careful assessment and person-centred care. We will review the literature to develop a framework of palliative dementia care. This helps us choose study outcomes and analyse data (WS2-4), and measure if our intervention makes a difference (WS5-6).We will review if it meets the needs of people affected by dementia, and how well it supports palliative dementia care, continuity of care and maximised comfort. We will build a case to inform policymakers what staff, skills and types of care are needed in the future. WS2: Understanding inequality, current and future population need. We will use data collected routinely as part of clinical care, linked across hospital and home to understand when, why and how often people move between care settings. Results will help plan services, direct policy and inform public opinion. Combined with WS1 data, we will project future need to build a case for better care. WS3: Unmet needs and care provision in dementia towards the end of life. We will follow people with dementia who may be nearing end of life and their carers for 9 months, checking them every 3 months for distressing symptoms, unmet health, psychological or social needs and services used. This will tailor our intervention in WS5 to what is important to the person and those close to them. We include people with young onset and prion dementias and their carers to understand these neglected groups. WS4: Bringing our findings together to design the intervention. We will review findings from WS1-3 to compile a decision-making matrix that helps patients, carers and health care workers match care needs to palliative treatments. We will combine this matrix with the Integrated Palliative Outcome for Dementia (IPOS-Dem) to support staff to identify health and social needs, and a tool to aid decision-making for staff and carers to provide the right care, at the right time in the right place. This will form the basis for our EMBED-Care intervention designed in WS5. WS5: Co-design of a new model of palliative dementia care. The intervention will empower staff and carers to assess and monitor needs and concerns, and support decision making to manage distressing symptoms by providing the right care. It will maximise comfort and bridge moves between settings, providing seamless care. It is person-centred and tailored to individual goals of care. We will develop training packages for staff, and work with a technology company to enable remote monitoring. WS6: Testing the new model of care. We will check how well this works, using paper and online system, across care homes and at home to ensure it is practical, feasible and useful.
Start Year 2019
 
Description Out of the Ordinary 
Organisation Royal Academy of Music
Country United Kingdom 
Sector Academic/University 
PI Contribution New programme set up by Royal Academy to co-produce a music and creative programme for people living with a rare dementia and their carers. RDS Impact contribution includes complementary quantitative analysis of each session's video recording, to automate analysis of displays of facial expressions and emotions throughout the project. Analysis plan derived from RDS Impact small group quantitative analysis, and applied to music group - to be reported at group level and findings discussed with Royal Academy practitioners and students. RDS Impact team members promoted the programme to a select group of Rare Dementia Support members, based on previous knowledge of music experience and/or engagement.
Collaborator Contribution Royal Academy of Music set up the programme, recruited and consented the participants, and created the necessary Data Transfer Agreements as Data Controller to enable data transfer from Royal Academy to UCL.
Impact TBC (e.g. plan for published articles/PhD thesis chapter)
Start Year 2020
 
Description 'Let's not forget those who forget!' Knowledge exchange on participatory design for environments for dementia 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other audiences
Results and Impact 25 architects and people working in built environment attended a presentation about rare and young onset dementias and a project called 'Let's not forget those who forget!' which focuses on modifiable factors and the built environment relevant to individuals affected by dementia.
Year(s) Of Engagement Activity 2021
URL https://www.ucl.ac.uk/epidemiology-health-care/lets-not-forget-those-who-forget
 
Description (Talking Lines) Blue Routes - A drawing based method for people affected by rare dementias 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Emma Harding, Charlie Harrison, Paul Camic,Adetola Grillo and Mary Pat Sullivan delivered a presentation on (Talking Lines) Blue Routes - A drawing based method for people affected by rare dementias at DEMEDARTS symposium
Year(s) Of Engagement Activity 2020
URL https://en.demedarts.com/
 
Description 14th Nordic Meeting in Neuropsychology 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Sebastian Crutch gave a talk on 'Visual deficits in dementia' at the 14th Nordic Meeting in Neuropsychology
Year(s) Of Engagement Activity 2021
URL https://www.nordicmeeting2021.com/download/Preliminary%20program%20NMN_webApril30.pdf
 
Description 25th World Congress of Neurology (WCN) conference talk on PCA 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A talk on Update on posterior cortical atrophy (PCA) was given at the 25th World Congress of Neurology (WCN) conference
Year(s) Of Engagement Activity 2021
 
Description A 6/7 session programme for RDS members 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact 2 partial and 2 full roll outs of a 6/7 session programme for carers of people with a rare dementia have been delivered, and a 3rd is underway, due to complete in April 2022.
The purpose of the programme is to facilitate carers of people living with a rare dementia diagnosis to better understand their experiences of grief and loss along the dementia journey.
We have called the programme 'The Road Less Travelled: Our Journey with Grief and Loss - A programme for carers of people with a rare dementia'. In using the analogy of a less travelled road we want to acknowledge the unique aspects and impact that a rare or young onset dementia diagnosis entails. By referencing the experience of grief and
loss as a journey, we intend to convey the ongoing process of adaptation and adjustment to the experience of grief and loss in all those affected by these diagnoses.
Whilst the incidence of dementia is reaching ever higher prevalence across the world, rare dementia diagnoses remain less well acknowledged or recognised. Although there are many overlapping implications, there are some consequences of a rare dementia diagnosis which are unique - and which currently remain less well understood or supported.
The programme is made up of 6/7 sessions each of 2 hours duration, which are delivered by 2 facilitators via an online platform to groups of up to 8 participants.
There is an optional 'independent activity' at the end of each session. These are not compulsory. Sometimes there is more than one suggested independent activity - participants are free to choose one that seems most appropriate for them.

This programme is accompanied by a handbook is intended to form an ongoing resource which participants can also reflect back on after the programme has finished.

The outcomes of this programme include encouraging each other to recognise, respect and allow grief. Grief is not something to be fixed or cured. It is a helpful and essential process. The programme seeks to bring participants to a place where they can each live with their own experience of grief, enabling it to unfold in whatever way is right for them.

Outcomes will be further evaluated using both qualitative and quantitative measures.
Year(s) Of Engagement Activity 2021,2022
 
Description Advancing Dementia Care Cymru Conference - lived experience 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Roberta McKee-Jackson gave a talk on her live experience at the Advancing Dementia Care Cymru Conference; Bangor; Public Health Wales
Year(s) Of Engagement Activity 2021
 
Description AgeUK Salford Podcast 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact A podcast episode with Roberta McKee-Jackson and Karen Tapson and AgeUk Staff: A Conversation with Rare Dementia Support
Year(s) Of Engagement Activity 2021
URL https://www.youtube.com/watch?v=hdxKCZtytlg
 
Description Alzheimer's Society - RDS Talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Nikki Zimmermann gave a talk about RDS to 80 people from the Alzheimer's Society
Year(s) Of Engagement Activity 2022
 
Description Alzheimer's Society - Rare Dementia & RDS talk Hampshire, Dorset, Wiltshire, Bath, Swindon 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Industry/Business
Results and Impact Trish O'Hara gave a talk on rare dementia and RDS services to mixture of 15 staff members from the Alzheimer's Society Hampshire, Dorset, Wiltshire, Bath, Swindon Zoom
Year(s) Of Engagement Activity 2021
 
Description Alzheimer's Society - Rare Dementias & RDS talk Tower Hamlets & Hillingdon 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Trish O'Hara gave a talk to 20 employees at the Alzheimer's Society - Tower Hamlets & Hillingdon
Year(s) Of Engagement Activity 2021
 
Description Alzheimer's Society- Rare Dementias & RDS talk Bexley - Greenwich- Lewisham- Bromley 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Trish O'Hara gave a talk on rare dementias and RDS services to staff from the Alzheimer's Society- Rare Dementias & RDS talk Bexley - Greenwich- Lewisham- Bromley via Zoom
Year(s) Of Engagement Activity 2021
 
Description Article about RDS Impact project in Royal Society for Public Health (RSPH) arts and health special interest group newsletter (January 2020) 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Article by Paul Camic about RDS Impact project in Royal Society for Public Health (RSPH) arts and health special interest group newsletter (January 2020)
Year(s) Of Engagement Activity 2020
 
Description Bangor press release: Assessing the value of dementia support groups 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Bangor press release re: ESRC/NIHR funding of RDS Impact project
Year(s) Of Engagement Activity 2019
URL https://www.bangor.ac.uk/research/news/assessing-the-value-of-dementia-support-groups-39357
 
Description Bishop Stortford Mail sorting room - Post Office - How to work with an individual with FTD who presents challenges 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Industry/Business
Results and Impact Trish O'Hara gave a talk on How to work with an individual with FTD who presents challenges to 75 staff members at Bishop Stortford Mail sorting room - Post Office -
Year(s) Of Engagement Activity 2021
 
Description Blog on patient and public involvement (December 2019) 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact Guest Blog - How do you report your PPI in dementia research? Meet GRIPP2
Blog by Dr Aida Suarez-Gonzalez on Dementiaresearcher website
Year(s) Of Engagement Activity 2019
URL https://www.dementiaresearcher.nihr.ac.uk/guest-blog-how-do-you-report-your-ppi-in-dementia-research...
 
Description Bristol dementia wellbeing service training on PCA (September 2019) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Training on PCA for health and social care workers working for the Bristol dementia wellbeing service
Year(s) Of Engagement Activity 2019
 
Description Bromley Dementia Hub - RDS Talk 
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 Nikki Zimmermann gave a talk about RDS Services to 8 people living with dementia at the Bromley Dementia Hub
Year(s) Of Engagement Activity 2021
 
Description Bromley Dementia Hub - Rare Dementias 
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 Nikki Zimmermann gave a talk on rare dementias to 15 carers and people living with dementia at the Bromley Dementia Hub
Year(s) Of Engagement Activity 2021
 
Description Buckinghamshire PPA meeting 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Discussion with regional Primary Progressive Aphasia (PPA) Rare Dementia Support group members to facilitate co-creation of research study design
Year(s) Of Engagement Activity 2019
 
Description CBC radio interview: What supports are there for those diagnosed with dementia at a younger age? 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact For Nipissing University's Dr. Mary Pat Sullivan, her research is personal. Sullivan is part of an international research project looking at rare forms of dementia. Typically, dementia is diagnosed when someone is aged 65 or older, but Sullivan's mother was diagnosed with a rare type much earlier in life.
Year(s) Of Engagement Activity 2019
URL https://www.cbc.ca/news/canada/thunder-bay/programs/upnorth/what-supports-are-there-for-those-diagno...
 
Description CCCU Press Release: New research to provide virtual support for people with rare dementias 
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 Professional Practitioners
Results and Impact CCCU Press Release announcing RDS Impact
Year(s) Of Engagement Activity 2019
URL https://www.canterbury.ac.uk/news-centre/press-releases/2019/new-research-to-provide-virtual-support...
 
Description CJD Support Network - online meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Members of the CJD support group attended an online presentation about living with pre death grief and loss. This generated discussion and questions from and within the audience. The presentation was intended to raise awareness of pre death grief and open up channels for understanding and support.
Year(s) Of Engagement Activity 2020
URL https://youtu.be/i499xc3ZwZk
 
Description Carers Support Group Webinars 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Live, online support group webinars for early-mid stage and later-stage carers covering a range of topics such as mealtime planning, needs assessments, transitioning into care homes, at-home care options, etc. Talks were followed by a live Q&A panel and resources were mailed out to members the following week along with invitations to take part in research.
Year(s) Of Engagement Activity 2021,2022
URL https://www.youtube.com/watch?v=kBTwwvDI8dE&list=PLQd2DImjcCRKhD7oBFHTpU7yo7YGsliVI&index=3&ab_chann...
 
Description Conference presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Victory Elfenzor gave a presentation titled 'A comprehensive model detailing the health economic evaluation of rare dementia multi-support care interventions'.
Year(s) Of Engagement Activity 2021
 
Description Conference presentation 
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 Presentation by Ian Davies Abbott to Public Health Wales event on Rare Dementia Support in Wales .
Year(s) Of Engagement Activity 2021
 
Description Conference presentation at UCL Institute of Mental Health Symposium on Dementia 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact Invited talk about 'Unusual dementias'. The IoMH Symposium is a termly half day event discussing cutting edge research and clinically relevant topics in mental health. They are open to all interested clinicians, researchers and students across UCL, Camden & Islington NHS Trust and affiliated partners.
Year(s) Of Engagement Activity 2021
URL https://www.ucl.ac.uk/mental-health/events/2021/mar/iomh-symposium-dementia
 
Description Conference presentation at UK Dementia Care Congress (Doncaster, November 2019) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact UK Dementia Care Congress 2019 - conference presentation in 'Research Update' session - 7th November 2019
Title: How can we support people living with, and affected by, rare dementias?

We outlined some of the specific needs of and challenges faced by those living with rare, atypical forms of dementia, and introduced the recently launched 5 year Rare Dementia Support Impact study which will explore and capture the value of multi-component support groups for individuals and families affected by rare dementia diagnoses.
Year(s) Of Engagement Activity 2019
URL https://careinfo.org/event/uk-dementia-congress-2019/?z=26728?z=31836
 
Description Conference presentation: Culture, Health and Wellbeing International Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A presentation on developing a drawing-based method to capture and communicate experiences of rare dementias
Year(s) Of Engagement Activity 2021
 
Description Conference presentation: Culture, Health and Wellbeing International Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A presentation on Developing Poetry as a Research Methodology to further understand rarer forms of dementia
Year(s) Of Engagement Activity 2021
 
Description Creative approaches to person-centred care and support for people with rare dementias - British Society of Gerontology Creative Ageing Special Interest Group symposium presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation to the BSG Special Interest Group focused on creative aspects to person-centred care and support for people with rare dementias (including methodologies within the RDS Impact study e.g. Blue Routes/research poetry)
Year(s) Of Engagement Activity 2020
URL https://webcache.googleusercontent.com/search?q=cache:R2_A9Z7FjhMJ:https://www.britishgerontology.or...
 
Description DLB support group webianrs 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Live, online DLB webinars covering topics such as research updates, hallucinations, peer support, and members' experience. Webinar recording was then uploaded to Youtube and resources were sent to members the following week with invitations to take part in research.
Year(s) Of Engagement Activity 2021,2022
URL https://www.youtube.com/watch?v=GLHCBrqXNeM&list=PLQd2DImjcCRL1sj3blS1jJZrtPw1IM0Cb&ab_channel=RareD...
 
Description Danny O'Sullivan Group Lunchtime Learning Talk RDS Services 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Industry/Business
Results and Impact Nikki Zimmermann and Claire Waddington gave a talk on RDS Services to 15 staff members of the Danny O'Sullivan Group.
Year(s) Of Engagement Activity 2020
 
Description Dementia Researcher piece: New research to provide virtual support for people with rare dementias 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Article on the Dementia Research website about RDS Impact: A new project to create an online support network for people with young onset and rare dementias is one of four research projects funded as part of a £15 million initiative on research to improve the lives of people living with dementia.
Year(s) Of Engagement Activity 2019
URL https://www.dementiaresearcher.nihr.ac.uk/new-research-to-provide-virtual-support-for-people-with-ra...
 
Description Dementia UK Summer School Webinar for Health Professionals 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Hannah Gardner gave a talk to 70 health professionals at Dementia UK Summer School Webinar for Health Professional
Year(s) Of Engagement Activity 2021
 
Description Dementia UK Twitter Space about young onset dementia 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Hannah Gardner took part in a live Twitter discussion as part of the Dementia UK Twitter Space about Young-onset Dementia
Year(s) Of Engagement Activity 2021
 
Description Dementia UK Young onset Dementia Webinar (Admiral Nurses) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Hannah Gardner gave a talk at Dementia UK Young onset Dementia Webinar to a group of Admiral Nurses
Year(s) Of Engagement Activity 2021
 
Description Dementia UK and UCL Positive Communication for people living with dementia 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Hannah Gardner gave a talk at Dementia UK on positive Communication for people living with dementia to a group of 80 admiral nurses and Dementia UK staff
Year(s) Of Engagement Activity 2021
 
Description Dementia projects to improve peer support, prevention and end-of-life care 
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 Professional Practitioners
Results and Impact UCL Press Release outlining that teams at UCL were awarded more than £11 million for projects seeking to create an online support network, improve end of life care, and learn more about how lifestyle change can prevent dementia.
Year(s) Of Engagement Activity 2019
URL https://www.ucl.ac.uk/news/2019/jan/dementia-projects-improve-peer-support-prevention-and-end-life-c...
 
Description Drawing as Assessment: Developing Methods for Talking Through the Line 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact 150 people attended an online session of presentations and discussions providing access to research updates and critical conversations around contemporary drawing. This particular talk was about Drawing as Assessment: Developing Methods for Talking Through the Line
Year(s) Of Engagement Activity 2021
 
Description ESRC-NIHR Press Release: New research to provide virtual support for people with rare dementias 
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 Professional Practitioners
Results and Impact New research to provide virtual support for people with rare dementias

New research projects announced under the ESRC-NIHR Dementia Research Initiative 2018
Projects aim to improve the lives of people living with dementia across the UK
Four funded projects will address online support, health inequalities, lessening the risk of developing dementia and end of life care
Year(s) Of Engagement Activity 2013,2019
URL https://esrc.ukri.org/news-events-and-publications/news/news-items/new-research-to-provide-virtual-s...
 
Description Early Middle Stages Carer's Webinar talk on legal resources and Q&A Panel 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Trish O'Hara gave a talk on legal resources during the Early-mid stage support group webinar for RDS members
Year(s) Of Engagement Activity 2022
 
Description East London NHS Foundation Trust Rare Dementias & RDS Talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Trish O'Hara gave a talk on rare dementias and RDS services to 20 CMHt Psychs OT Memory Clinic from theEast London NHS Foundation Trust
Year(s) Of Engagement Activity 2021
 
Description East London NHS Foundation Trust Rare Dementias & RDS Talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Trish O'Hara gave a talk to 20 CMHT Psychs from OT Memory Clinic
Year(s) Of Engagement Activity 2021
 
Description FPOP Bulletin 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact £3.65m Rare Dementia Support Impact Study begins

A £3.65m research project carrying out the first major study of the value of support groups for people living with or caring for someone with a rare form of dementia is now underway. The five-year Rare Dementia Support (RDS) Impact Study, a collaboration between University College London (UCL), Bangor University and Nipissing University in Canada, is led by Professor Sebastian Crutch from the Dementia Research Centre, UCL.
Year(s) Of Engagement Activity 2019
URL https://shop.bps.org.uk/publications/publication-by-series/fpop-bulletin.html
 
Description FTD support group webinars (bvFTD and PPA) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact A series of FTD live online webinars covering topics relevant to PPA and bvFTD including research updates symptom management, strategies for coping with difficult situations, conversations with members etc. Talks were followed by a live Q&A panel and resources were mailed out to members the following week along with invitations to take part in research
Year(s) Of Engagement Activity 2021,2022
URL https://www.youtube.com/watch?v=WDruM6X340Q&list=PLQd2DImjcCRK-8wgERqxpJshhJzj43Oun&ab_channel=RareD...
 
Description Facilitators handbook - The Road Less Travelled : Our journey with grief and loss. A programme for carers of people with a rare dementia. 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact This Facilitators Manual is in draft form and currently under review and development. It is designed to assist facilitators of the programme in their preparation for the sessions, and to provide additional background information which provides context to the material provided in the Participants Handbook.
Year(s) Of Engagement Activity 2021,2022
 
Description Friendly Face event (Bangor, September 2019) 
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 Discussion with Welsh Friendly Face group members to facilitate co-creation of research study design
Year(s) Of Engagement Activity 2019
URL http://dsdc.bangor.ac.uk/supporting-people.php.en
 
Description Frontotemporal Dementia Annual Seminar: Workshop & consultation 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Initital consultation with Rare Dementia Support members regarding the focus of the study, topics to be guided by our members
Year(s) Of Engagement Activity 2019
URL https://www.youtube.com/watch?v=pgtJKz-a7G0
 
Description Frontotemporal Dementia Regional Rare Dementia Support meeting: Workshop & consultation 
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 Discussion with regional FTD Rare Dementia Support group members to facilitate co-creation of research study design
Year(s) Of Engagement Activity 2019
 
Description Grief and Loss - The Road less Travelled - Participants Handbook 
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 Jill Walton and Kirsten Moor wrote the participant handbook for The Road less Travelled a Grief and Loss programme for carers of people with rare forms of demenita. This was used as the main resource during the programme, which was available to RDs members.
Year(s) Of Engagement Activity 2021
 
Description Grief and Loss - programme roll out 
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 Jill Walton and Roberta McKee-Jackson facilitated a 6-session Grief and Loss Programme for a group of 9 carers of people with rare forms of dementia
Year(s) Of Engagement Activity 2021
 
Description Group members handbook for 'The Road Less Travelled:Our journey with grief and loss - a programme for carers of people '. 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact The handbook initially accompanied the first roll out of 'The Road Less Travelled:Our journey with grief and loss - a programme for carers of people with a rare dementia '.
It has subsequently been updated/edited to accompany 2 further roll-outs, the latest being Jan-April 2022.With notes to accompany the sessions of the programme, and space to make notes/records by participants, it is intended as a resource to accompany the 6 sessions of the programme, as well as becoming a record to reflect back on after the programme has been completed.

Appendices are provided with additional educational, support and informational resources.
Year(s) Of Engagement Activity 2021,2022
 
Description Hammersmith and Fulham CMHT RDS Talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact RDS Direct Support Team Lead, Nikki Zimmerman gave a talk about Rare Dementia Support was given to 15 health professionals (CMHT) in Hammersmith and Fullham
Year(s) Of Engagement Activity 2019
 
Description Health & Care Research: CADR instrumental in securing £4.5m of UK funding for Bangor University to carry out new dementia research 
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 Policymakers/politicians
Results and Impact https://www.healthandcareresearch.gov.wales/news/cadr-instrumental-in-securing-4-5m-of-uk-funding-for-bangor-university-to-carry-out-new-dementia-research/
Year(s) Of Engagement Activity 2019
URL https://www.healthandcareresearch.gov.wales/news/cadr-instrumental-in-securing-4-5m-of-uk-funding-fo...
 
Description Health Care Professionals & ACP 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Trish O'Hara and Olivia Wood gave a talk on Health Care Professionals & ACP to 8 RDS members
Year(s) Of Engagement Activity 2021
 
Description Health Care Professionals & ACP 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Trish O'Hara and Olivia Wood gave a talk on Health Care Professionals & ACP to RDS members
Year(s) Of Engagement Activity 2021
 
Description Hertswise Hertford Young Onset Dementia Hub 
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 Hannah Gardner gave an interactive presentation on young-onset dementias to a group of 10 people living with dementia and carers.
Year(s) Of Engagement Activity 2021
 
Description Hertswise Young onset Dementia Hub in Letchworth 
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 Hannah Gardner gave a talk to a group of carers and people living with dmeentia at Hertswise Young onset Dementia Hub in Letchworth
Year(s) Of Engagement Activity 2021
 
Description Hertswise Young onset Dementia Hub in Stevenage 
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 Hannah Gardner gave a talk to a group of people living with dementia and carers at the Hertswise Young onset Dementia Hub in Stevenage
Year(s) Of Engagement Activity 2021
 
Description Hospice UK and Dementia UK-Palliative Care & Dementia Extension of Community Healthcare Outcomes (ECHO) network meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Hannah Gardner gave a talk on 'YOAD end of life care- supporting the family and educating HP' to 45 professionals at Hospice UK and Dementia UK-Palliative Care & Dementia Extension of Community Healthcare Outcomes (ECHO) network meeting
Year(s) Of Engagement Activity 2022
 
Description Impact of the arts in dementia care: Translating research into practice 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact The presentation was made as part of a knowledge exchange conference on young onset dementia. The target audience was diverse and included people with dementia, carers, staff from charities, practitioners and academic researchers. The purpose of this presentation was to introduce the arts as tools in dementia care and support across different impairment levels, and to give an overarching review of research to date in this area. Several positive comments were made by participants in the post conference evaluation about how this area was new to them. Six people contacted the presenter directly for further resources. The YouTube presentation was viewed (to date) 134 times https://www.youtube.com/watch?v=C5JMQ1Ir8Z0 This was an online conference due to Covid 19 restrictions and available worldwide as a result.
Year(s) Of Engagement Activity 2020
URL https://www.nipissingu.ca/events/young-onset-dementia-online-knowledge-exchange-event#session-9
 
Description Interdem summer school 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Aida to complete
Year(s) Of Engagement Activity 2019
 
Description Interview on "Hipocampo" website (November 2019) 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Website interview in Spanish with Dr Aida Suarez Gaonzalez, research fellow, on her role in developing online support for people with rare dementias as part of her work on the RDS Impact project.
Year(s) Of Engagement Activity 2019
URL https://www.hipocampo.org/entrevistas/AidaSuarezGonzalez.asp
 
Description Introducing RDS to Age UK, Colchester 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Third sector organisations
Results and Impact Presentation introducing RDS to Age Concern (dementia commissioned service DA) in Colchester
Year(s) Of Engagement Activity 2021
 
Description Introducing RDS to Torbay Carers 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Third sector organisations
Results and Impact Introducing RDS presentation to Torbay Carers (Carers Charity)
Year(s) Of Engagement Activity 2021
 
Description Invited talk at Dukes Theatre (Lancaster) Bring Me Laughter Online Festival 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact A talk about how combining artistic and scientific perspectives can provide a powerful platform for people living with dementia and those that care for them, allowing them to share their experiences and connect with others. The talk included reflections on a variety of musical, visual arts and comedy projects, and their impact on those living with rare and common forms of dementia.
Year(s) Of Engagement Activity 2021
URL https://dukeslancaster.org/bring-me-laughter-online-festival
 
Description Invited talk to GP commisioning group 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Policymakers/politicians
Results and Impact Overview talk on young onset and rare dementias to GP commissioning group
Year(s) Of Engagement Activity 2020
 
Description Invited talk to Royal College of Occupational Therapists 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Updates on Rare Dementia Support Services and Atypical Alzheimer's Disease Research
Year(s) Of Engagement Activity 2021
 
Description Late Stages Group- Care in the Home and Care Homes 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Tris O'Hara gave a talk on Care in the Home and Care Homes as art of the Late Stages Support Group available to members of RDS
Year(s) Of Engagement Activity 2021
 
Description Late Stages Webinar RDS - Transition and Care Homes 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Trish O'Hara gave a talk on transitioning into care homes as part of one of RDS's Late Stages Support Group Webinars
Year(s) Of Engagement Activity 2021
 
Description Launch of Rare Dementia Support in Wales 
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 This online workshop was designed to engage a mixed audience in the launch of Rare Dementia Support in Wales. It featured short presentations about living with a rare dementia by Professor Seb Crutch, the experiences of being a member of rare dementia support by Roberta McKee Jackson, and an overview of the RDS impact project by Prof. Gill Windle. Ian Davies-Abbott facilitated the day, using interactive methods to engage with the audience about what they would like to see in a support group in Wales. It was attended by a mixed audience (21 people).

The workshop was held as part of the Inaugural Wales International Dementia Conference that took place on 2nd and 3rd February 2021, hosted by Public Health Wales and the Royal College of Psychiatrists. https://padlet.com/ImprovementCymru/DementiaConference
Year(s) Of Engagement Activity 2021
URL https://padlet.com/ImprovementCymru/DementiaConference
 
Description Liverpool Dementia Forum: Therapy and support for people living with non-memory led dementias 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact More than 90 people attended live and more than 100 viewed the recording of this talk on Youtube. It was intended to educate families and patients on the therapeutic options available to the different types of non-memory led dementias. I received requests for further advice and information by email after the talk, most of them from patients and professionals based overseas.
Year(s) Of Engagement Activity 2022
URL https://www.youtube.com/watch?v=xt2CwapSsRc
 
Description Living with dementia in rural Wales presentation (Bangor, October 2019) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact University departmental talk on 'Living with dementia in rural Wales'
Year(s) Of Engagement Activity 2019
 
Description Lunch Time Lecture - Consent & the MCA in research 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Trish O'Hara gave a Lunch Time Lecture on Consent & the MCA in research to 25 DRC and RDS staff
Year(s) Of Engagement Activity 2021
 
Description Meaning making and poetry: Developing a novel method for research exploring rare dementia support 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Paper delivered at the 50th Annual Scientific and Educational Meeting of the Canadian Association on Gerontology, Toronto, 21-23 October.
Year(s) Of Engagement Activity 2021
 
Description National MAS RDS COVID Response Talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Nikki Zimmerman gave a COVID Response talk to 80 health professionals at a National MAS event
Year(s) Of Engagement Activity 2020
 
Description National MAS RDS Talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Nikki Zimmerman gave a Rare Dementia Support talk to 150 health professionals at a national Management Advisory Service event
Year(s) Of Engagement Activity 2020
 
Description Newham New Deal Partnership - Rare Dementias & RDS talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Industry/Business
Results and Impact Trish O'Hara gave a talk on rare dementias and RDS services to 7 staff members at Newham New Deal Partnership
Year(s) Of Engagement Activity 2021
 
Description Newspaper article on Knowledge Exchange event in the North Bay Nugget 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Media publicity for knowledge exchange event on young onset dementia, which held on June 16 2020, to raise awareness of the study and young onset/rare dementias.
Year(s) Of Engagement Activity 2020
URL https://www.nugget.ca/news/local-news/international-research-project-returns-to-north-bay
 
Description Nipissing Press Release: Nipissing University Works With International and Local Partners to Research Rare Forms of Dementia and Support Systems in Rural and Remote Communities 
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 Professional Practitioners
Results and Impact Nipissing University Works With International and Local Partners to Research Rare Forms of Dementia and Support Systems in Rural and Remote Communities
Year(s) Of Engagement Activity 2019
URL https://www.nipissingu.ca/news/2019/nipissing-university-works-international-and-local-partners-rese...
 
Description Online Seminar - Pre-death grief and preparation for end of life in family carers of people living with dementia 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Part of the 'Seminars in Ageing' program which is jointly hosted by the National Ageing Research Institute (NARI), Royal Melbourne Hospital Royal Park Campus, Melbourne Health (MH) and the Academic Unit for the Psychiatry of Old Age, The University of Melbourne (AUPOA), this presentation was entitled 'Pre-death grief and preparation for end of life in family carers of people living with dementia'.It was an hour seminar on zoom and attracted researchers and healthcare professionals (and anyone interested in ageing research who has joined the mailing list).
Year(s) Of Engagement Activity 2021
 
Description Online discussion groups (Bereaved carers) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Groups arranged online to bring together people who have formerly cared for a person with a rare dementia, who are now bereaved. Groups are not recorded due to the sensitive nature of the group (therefore no URL available)
Year(s) Of Engagement Activity 2019,2020,2021
 
Description Online interventions consultation workshop (October 2019) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Teleconference with people who have developed online interventions including Emily Rogalski
Year(s) Of Engagement Activity 2019
 
Description Ontario University Article: Dementia stigma slowly being overcome 
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 Industry/Business
Results and Impact Dr. Mary Pat Sullivan is part of an international research project looking at so-called rare forms of dementia as well as support systems in rural and remote communities.

Rare forms take in what is commonly called early-onset dementia - those diseases that generally affect people younger than 65, and sometimes people in their 20s, although it typically affects people in their 50s and 60s.

The Alzheimer's Society of Canada estimates that 747,000 Canadians are living with Alzheimer's or another form of dementia. About 16,000 of those are classed as the rare form.

"When my mother was diagnosed, it was a mystery to the medical community" in North Bay, Sullivan says.

The five-year study will involve Nipissing University, University College London and Bangor University in Wales, as well as a local community partnership with the Alzheimer Society Sudbury-Manitoulin North Bay and Districts.
Year(s) Of Engagement Activity 2019
URL https://ontariosuniversities.ca/stories/dementia-stigma-slowly-being-overcome
 
Description Our legacy: New funding to support rare dementias 
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 Blog post announcing new funding from the ESRC and NIHR to create a virtual support network for people living with rare dementias.
Year(s) Of Engagement Activity 2019
URL http://www.createdoutofmind.org/stories-and-reflections/our-legacy-new-funding-to-support-rare-demen...
 
Description PCA Support Group Webinars 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Live online PCA webinars hosted on zoom cover topics such as research updates, psychological impacts of PCA, assistive technology and home adjustments etc. Talks were followed by a live Q&A panel and resources were mailed out to members the following week along with invitations to take part in research
Year(s) Of Engagement Activity 2021,2022
URL https://www.youtube.com/watch?v=Tf1SZvlYVH4&list=PLQd2DImjcCRLKqiNHuW4hYScaqaQ0jlS4&index=3&ab_chann...
 
Description PCA presentation to ophthalmologists at Scottish Ophthalmology Club conference (Stirling, September 2019) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation about Posterior Cortical Atrophy (PCA) and the management and support needs of these patients to more than 100 ophthalmologists and related eye health care professionals and businesses attending the Scottish Ophthalmological Club conference (Stirling University, 19-20 Sept 2019)
Year(s) Of Engagement Activity 2019
URL https://www.s-o-c.org.uk/pictures/SOC%20Programme%20Sep%202019.doc
 
Description PCA talk to Swansea University psychology department (Swansea, March 2020) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Postgraduate students
Results and Impact PCA talk to Swansea University psychology department (Swansea, March 2020) and discussion about potential for setting up a South Wales PCA RDS support group
Year(s) Of Engagement Activity 2020
 
Description PCA training for Oxfordshire clincial psychologists (Aylesbury, March 2020) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact PCA training for a group of 25 Oxfordshire, Herfordshire and Buckinghamshire-based clincial psychologists
Year(s) Of Engagement Activity 2020
 
Description Podcast about the RDS Impact study (October 2019) 
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 Postgraduate students
Results and Impact Podcast introducing the RDS Impact study to other early career dementia researchers.
Year(s) Of Engagement Activity 2019
URL https://www.dementiaresearcher.nihr.ac.uk/podcast-rare-dementia-support-impact-study/
 
Description Podcast on consenting in dementia research (January 2020) 
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 Postgraduate students
Results and Impact Podcast by Aida Suarez Gonzalez about consenting in dementia research on Dementiaresearcher website.
Year(s) Of Engagement Activity 2020
URL https://www.dementiaresearcher.nihr.ac.uk/guest-blog-cognitive-accessibility-person-centred-care-and...
 
Description Posterior Cortical Atrophy RDS meeting: Inital consultation session 
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 Initial consultation with RDS members about which questions we should be asking for the Impact study
Year(s) Of Engagement Activity 2019
URL https://www.youtube.com/watch?v=UC4Jo6WpZu8
 
Description Posterior Cortical Atrophy RDS meeting: Second consultation session 
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 Second consultation session with RDS members re: research study design for WP1
Year(s) Of Engagement Activity 2019
URL https://www.youtube.com/watch?v=l-X3Jt0oBs8
 
Description Posterior cortical atrophy RDS support group meeting (December, 2019) 
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 Discussion with national PCA Rare Dementia Support group members to facilitate co-creation of research study design, plus interview with support group member Doug Banks about challenges of sustaining paid employment with a diagnosis of PCA.
Year(s) Of Engagement Activity 2019
URL https://www.youtube.com/watch?v=xfzRQNWdt7o
 
Description Pre-death grief presentation for NHS R&D department 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Rosie Stephens-Neck gave a talk on pre-death grief to the R&D department of the North East London NHS Foundation Trust
Year(s) Of Engagement Activity 2022
 
Description Presentation & Research Poetry pilot engagement workshop (Hertfordshire, March 2020) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Presentation & Research Poetry pilot with Hertfordshire PCA regional support group facilitated by Charles Harrison (artist) and Roberta McKee Jackson (former carer and PPI lead)
Year(s) Of Engagement Activity 2020
 
Description Presentation at Demedarts: Educating Empathy - Caring for Dementia Symposium; 'Blue Routes - a drawing based method for people affected by rare dementias' 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Researcher Emma Harding and visual artist Charles Harrison presented an innovative drawing-based research method which has been developed wand is being piloted with people affected by rarer forms of dementia. The presentation drew a mixed audience of researchers, practitioners, the general public and people affected by dementia and their families and the presentation sparked discussion about the possibilities of the arts for capturing lived experience and the need for accessible research methods for people affected by dementia.
Year(s) Of Engagement Activity 2020
URL https://en.demedarts.com/symposium
 
Description Presentation for Scotland TIDE 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Roberta McKee-Jackson gave a talk on Rare and Young Onset Dementias at Scotland TIDE
Year(s) Of Engagement Activity 2021
URL https://www.youtube.com/watch?v=hdxKCZtytlg
 
Description Presentation on dementia, arts and support groups (Birmingham, 2019) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation on dementia, arts and support groups at Creative Dementia Arts Network for Arts and Dementia: Developing Best Practice Conference, MCA, Birmingham, 2019
Year(s) Of Engagement Activity 2019
URL https://careinfo.org/event/creative-dementia/
 
Description Presentation to Memory Assessment Services in Wales 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Ian Davies Abbott gave an overview of rare dementia support in Wales to the memory assessment services.
Year(s) Of Engagement Activity 2021
 
Description Presentation to professionals working with seniors in northern Ontario, Canada 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Presented on young onset and rare dementias and the impact on the family to Behavioural Supports Ontario, a team of health and social care professionals who support seniors in the northern region. The presentation aimed to promote the study and also raise awareness of the unique needs of people living with young onset and rare dementias.
Year(s) Of Engagement Activity 2020
 
Description Presentation to staff of a local Alzheimer Society in northeastern Ontario, Canada 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Third sector organisations
Results and Impact Presented on young onset and rare dementias to staff of the Alzheimer Society in northeastern Ontario, Canada. The presentation aimed to promote the study and also raise awareness of the unique needs of people living with young onset and rare dementias.
Year(s) Of Engagement Activity 2020
 
Description Presentation to the Dementia Society of Ottawa and Renfrew County 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact The presentation provided an opportunity to connect with community partners and people with lived experience, promote the study and raise awareness of rare dementias.
Year(s) Of Engagement Activity 2021
URL https://www.youtube.com/watch?v=SAcVyoiP6fw
 
Description Presentations about Rare Dementia Support to Alzheimer's Society - regional offices x 17 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Third sector organisations
Results and Impact 17 presentations introducing Rare Dementia Support to Alzheimer's regional offices in: Charity - Alzheimer's Society South Devon Dementia Advisers
AS Berks Dementia Advisers, AS Oxford Dementia Advisers, AS Milton Keynes, AS Bucks, AS North Devon and Cornwall, AS Cumbria and Lancashire, AS North Somerset and Somerset, AS Bristol, AS Gloucester, AS Cheshire and Merseyside, AS Herts, AS Essex, AS Norwich and Waveney, AS Greater Manchester, AS West Yorkshire, AS Sutton and Croydon
Year(s) Of Engagement Activity 2021
 
Description Presentations about Rare Dementia Support to MIND - regional offices x 3 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Third sector organisations
Results and Impact Presentation introducing RDS for MIND (MIND Hampshire North/East, MIND Hampshire South/West and MIND South/West)
Year(s) Of Engagement Activity 2021
 
Description Primary Progressive Aphasia (PPA) support group meeting (London, October 2019) 
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 Discussion with national Primary Progressive Aphasia (PPA) Rare Dementia Support group members to facilitate co-creation of research study design
Year(s) Of Engagement Activity 2019
 
Description Progressive Primary Aphasia RDS meeting: Inital consultation session 
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 Initial consultation with PPA RDS members to enable co-creation of research study design for WP1
Year(s) Of Engagement Activity 2019
URL https://www.youtube.com/watch?v=NgwJiumZZIA
 
Description Quarterly Study Newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact Published a quarterly newsletter which promotes the study and related activities as well as journal articles, events and news of relevance to people living with young onset or rare dementias, practitioners and academics. The newsletter contributes to raising awareness of the study and related activities and connecting with community partners.
Year(s) Of Engagement Activity 2020,2021
 
Description RDS Instagram 
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 Shaima Alterkawi set up the RDS Instagram page to engage with a wider audience and advertise our services.
Year(s) Of Engagement Activity 2021
URL https://www.instagram.com/raredementiasupport/
 
Description RDS Introduction Talk - NHS Trusts x 5 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Introducing Rare Dementia Support to regional NHS departments including: NHS Community Mental Health Team (Suffolk); NHS - Community Mental Health Team (Dorset); NHS Devon Hospital Doctors (Devon); NHS Devon and Bristol Dementia service Doc/OT/Nurses (Devon & Bristol); NHS - Memory Service Doc/Consultants (West Sussex)
Year(s) Of Engagement Activity 2021
 
Description RDS Scotland FTD/PPA support group presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Roberta McKee-Jackson gave a talk on FTD/PPA rare dementias to RDS Scotland FTD/PPA support group
Year(s) Of Engagement Activity 2022
 
Description RGN Annual Education Day Rare Dementias Talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Nikki Zimmerman gave a rare dementias talk to 85 nurses at the RGN Annual Education Day.
Year(s) Of Engagement Activity 2019
 
Description Rare Dementia Clinical-Research Newsletter #3 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact Rare Dementia Clinical Research Newsletter - issue 3: October 2021
Year(s) Of Engagement Activity 2021
 
Description Rare Dementia Support Carers meeting: Initial consultation with members re: research design 
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 Initial consultation with carers of people living with rare forms of a dementia, to allow for co-creation of research and experimental design in WP1
Year(s) Of Engagement Activity 2019
URL https://www.youtube.com/watch?v=4LpAWyISGCo
 
Description Rare Dementia Support carers meeting (London, October 2019) 
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 Discussion with national group of Rare Dementia Support carer members to facilitate co-creation of research study design
Year(s) Of Engagement Activity 2019
 
Description Rare Dementia Support in Wales 
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 Ian Davies Abbott facilitates monthly support groups for people living with rarer dementias and their carers in Wales. Each group is attended by 5-10 people. These activities link in with and enhance the wider activity by the RDS team at Bangor, who are working with the Alzheimer's Society on making the University a 'dementia friendly' place.
Year(s) Of Engagement Activity 2021
 
Description Rare Dementia Support webpage - Impact study 
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 Article outlining the Impact study:

Rare Dementia Support are now inviting participants to take part in The Impact Study, the largest research project of its kind, investigating the impact of support groups for people affected by rare dementias.
Year(s) Of Engagement Activity 2019
URL https://www.raredementiasupport.org/research/help-us-improve-support-for-rare-dementias/
 
Description Rare and Young Onset Dementias - Birmingham-Solihull Carers Group 
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 Roberta McKee-Jackson gave a talk on Rare and Young Onset Dementias to the Birmingham-Solihull Carers Group
Year(s) Of Engagement Activity 2022
 
Description Rare and Young Onset Dementias -- 3NDWG 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Roberta McKee-Jackson gave a talk on Rare and Young Onset Dementias -- 3NDWG to an online audience of 174 people
Year(s) Of Engagement Activity 2022
 
Description Rare and young onset dementia talk at The Alzheimer's Show 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Talk about rare and young onset dementias as part of a 2-day program of live online webinar series
Year(s) Of Engagement Activity 2021
 
Description Research presentation to faculty and staff of Nipissing University, Canada 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Presentation titled, 'Trying to do the best I can, as long as I can': Supporting people with rare and young onset dementia, aimed to increase awareness of the unique needs of people living with young onset and rare dementias, and share preliminary findings from the study. More awareness about the study was created.
Year(s) Of Engagement Activity 2021
 
Description Research presentation to faculty and staff of Nipissing University, Canada 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other audiences
Results and Impact Presentation during research month at Nipissing University aimed at promoting the study and raising awareness of rare dementias.
Year(s) Of Engagement Activity 2021
 
Description Rural Health and Care Conference poster presentations (Builth Wells, November 2019) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Jen Roberts, a research officer with Bangor University, won third prize in the poster competition for her presentation on 'Dementia in rural settings: Exploring the first-hand experiences of people living with dementia and care-givers'.
Year(s) Of Engagement Activity 2019
URL https://ruralhealthandcare.wales/public-staff-engagements/events/rhcw-conference-2019/
 
Description SGU Paramedic Students talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact Nikki Zimmermann gave a talk to 150 paramedic students at Saint George's University
Year(s) Of Engagement Activity 2021
 
Description SGU Paramedic Students talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Undergraduate students
Results and Impact Nikki Zimmerman gave an RDS talk to 300 paramedic students at Saint George's University
Year(s) Of Engagement Activity 2020
 
Description Safeguarding Followup for RDS Central Staff team 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Trish O'Hara gave a Safeguarding Followup for RDS Central Staff team
Year(s) Of Engagement Activity 2021
 
Description Safeguarding Training for RDS central Staff 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Trish O'Hara gave a safeguarding presentation to 15 members of central RDS staff
Year(s) Of Engagement Activity 2021
 
Description Safeguarding Training for regional RDS 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Trish O'Hara gave an online interactive safeguarding training presentation to 10 RDS regional staff members
Year(s) Of Engagement Activity 2021
 
Description Safeguarding Training for regional RDS 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Trish O'Hara gave an online interactive safeguarding training presentation to 15 RDS regional staff members
Year(s) Of Engagement Activity 2021
 
Description Salzburg Global Seminar Collaboration Leads to Dementia Research Funding 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Article: Article backing a Salzburg Statement on Innovations in Dementia Care and Dementia-Friendly Communities, four Salzburg Global Fellows will collaborate again as a result of a million-dollar research partnership.
Year(s) Of Engagement Activity 2019
URL https://www.salzburgglobal.org/news/latest-news/article/salzburg-global-seminar-collaboration-leads-...
 
Description Sino-UK Creative Ageing Online Roundtable 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Virtual roundtable hosted by the British Council in association with the Baring Foundation on the topic of creative ageing, dementia and the arts, with a small number of speakers from the UK and China.
Year(s) Of Engagement Activity 2020
 
Description Situating rare dementia support: A multi-site analysis 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Paper delivered at the 50th Annual Conference of the British Society of Gerontology. Lancaster, UK, 7-9 July, 2021
Year(s) Of Engagement Activity 2021
 
Description Small online groups (Advanced Care Planning & Healthcare Professionals) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Small group discussion combining the previous two themes of Care Planning and Healthcare Professionals
Year(s) Of Engagement Activity 2020,2021
 
Description Small online groups (Care Planning) 
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 Small online group discussions focused on the topic of care planning - set up to respond to need during Covid-19 lockdown restrictions
Year(s) Of Engagement Activity 2020
 
Description Small online groups (Couples) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Small online discussion group bringing couples living with and alongside a rare dementia together
Year(s) Of Engagement Activity 2020,2021
 
Description Small online groups (Empowering Your Identity) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Small online group discussions set up for people living with a diagnosis of a rare dementia - set up to respond to need during Covid-19 lockdown restrictions
Year(s) Of Engagement Activity 2020,2021
 
Description Small online groups (Healthcare Professionals) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Small online group discussions focused on the topic of healthcare professionals - set up to respond to need during Covid-19 lockdown restrictions
Year(s) Of Engagement Activity 2020
 
Description Small online groups (Hope) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Small online group focused on the topic of 'hope' - set up in response to need during Covid-19 lockdown
Year(s) Of Engagement Activity 2020,2021
 
Description Small online groups (Independence & Identity) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Small online group discussions focused on the topic of 'independence and identity' - set up to respond to need during Covid-19 lockdown restrictions
Year(s) Of Engagement Activity 2020,2021
 
Description Small online groups (Later stages) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Small online discussion group focused on the later stages of a rare dementia
Year(s) Of Engagement Activity 2021
 
Description Small online groups (Pre-bereavement Grief & Loss) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Small online group discussions focused on the topic of pre-death grief and loss - set up to respond to need during Covid-19 lockdown restrictions and inspired online intervention development (WP4)
Year(s) Of Engagement Activity 2020,2021
 
Description Small online groups (V.I.P - Voice of Identity and Positivity) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Small online discussions set up for a group of people living with a rare form of a dementia - this group continues to meet and provide feedback/reflection on different aspects of the RDS Impact project and service, and research processes in general (e.g. recruitment strategies/consent forms)
Year(s) Of Engagement Activity 2020,2021
 
Description Southwark and Lambeth CMHT - RDS 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Nikki Zimmermann gave a talk about RDS services to 12 health professionals at Southwark and Lambeth CMHT meeting
Year(s) Of Engagement Activity 2021
 
Description St George's Hospital YOD Talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Nikki Zimmerman gave a talk on young onset dementias to 50 healthcare professionals at St George's Hospital
Year(s) Of Engagement Activity 2019
 
Description Suffolk Rare Dementia Support group Talk 
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 Roberta McKee-Jackson gave a talk on Rare and Young Onset Dementias to the Suffolk Rare Dementia Support group
Year(s) Of Engagement Activity 2021
 
Description Suffolk Sue Ryder Cares presentation 
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 Roberta McKee-Jackson gave a talk on Rare Dementias: Past, Present and Future to Suffolk Sue Ryder Cares Management
Year(s) Of Engagement Activity 2021
 
Description Sussex CMHT - RDS Talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Nikki Zimmmermann gave a talk on RDS to 16 members of the Sussex CMHT
Year(s) Of Engagement Activity 2022
 
Description Taking Care workshop (Fabrica Gallery, Brighton, November 2019) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Taking Care. Fabrica, Brighton
Presented in partnership with ESRC Festival of Social Science.
Date: November 4th, 10am-4pm
Location: Fabrica Gallery, 40 Duke St, Brighton BN1 1AG
Description: Fabrica is a visual arts organisation based in a former Regency church in the heart of Brighton. In conjunction with Care(less), an exhibition by artist Lindsay Seers, the Testing Situations team will consider how cognitive tests help us understand how the human mind works by leading visitors through a series of testing experiences and drawing activities.
Year(s) Of Engagement Activity 2019
URL https://www.fabrica.org.uk/events-1/workshop-event-testing-situations-taking-care
 
Description Talk at Alzheimer's Show webinar 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Chris Hardy gave a talk on rare and young-onset dementia at the Alzheimer's Show webinar to an audience of 50 people
Year(s) Of Engagement Activity 2021
 
Description Talk at Calman training day in audiovestibular medicine 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact A presentation was delivered to 15 people atCalman training day in audiovestibular medicine. The talk covered auditory symptoms and related deficits in adults with cognitive disorders.
Year(s) Of Engagement Activity 2021
 
Description Talk on dementia, arts and support (Leeds, September 2019) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Talks on the value of the arts for people living with dementia and brief introduction to RDS Impact project by Charles Harrison and Seb Crutch at:
Living Well with Dementia: A Better Chance When We All Work Together
The Met Hotel, King St, Leeds LS1 2HQ
Wednesday 25th September 2019, 8.30-4pm
Year(s) Of Engagement Activity 2019
URL https://leedsplayhouse.org.uk/creative-engagement/older-people/theatre-dementia/
 
Description Talk on non-memory led dementias Liverpool and Dementia Forum 2022 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Dr. Aida Suarez-Gonzalez gave a talk on non-memory led dementias at the Liverpool and Dementia Forum
Year(s) Of Engagement Activity 2022
URL https://www.youtube.com/watch?v=xt2CwapSsRc
 
Description Talking Lines: An interdisciplinary artistic approach to understand experiences of living with a rare dementia 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Paper delivered at the 50th Annual Scientific and Educational Meeting of the Canadian Association on Gerontology, Toronto, 21-23 October.
Year(s) Of Engagement Activity 2021
 
Description Talking Point Q&A Forum 
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 Sebastian Crutch and Nikki Zimmermann took part in the Q&A panel at the Talking Point Forum
Year(s) Of Engagement Activity 2020
 
Description Teleconference (Developing online interventions) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Teleconference with researchers specialising in developing psychosocial interventions (e.g. Marjolein de Vugt; a Professor of Psychosocial Innovations in dementia. Trained as a neuropsychologist, she works as a clinical researcher and as a clinician in the memory clinic of the Maastricht University Medical Center+ (MUMC+))
Year(s) Of Engagement Activity 2019
 
Description Tide - Rare Dementia and RDS talk 
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 Nikki Zimmermann gave a talk on rare dementias and RDS services to 14 carers at Tide event
Year(s) Of Engagement Activity 2021
 
Description TrialSite News Article: Nipissing University Researchers Rare Forms of Dementia 
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 In collaboration with University College London and Bangor University (Wales) as well as a local community partnership with the Alzheimer Society Sudbury-Manitoulin North Bay & Districts, Nipissing University is researching dementia. The group has received a grant for over $6 million from the National Institute for Health Research as well as the Economic and Social Research Council. Thus far Nipissing University has received over $600,000 in total.
Year(s) Of Engagement Activity 2019
URL https://www.trialsitenews.com/nipissing-university-researchers-rare-forms-of-dementia/
 
Description UCL Legal Service Rare Dementias Talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Undergraduate students
Results and Impact Nikki Zimmerman gave a UCL Legal Service Rare DementiasTalk
Year(s) Of Engagement Activity 2019
 
Description Virtual Ageing in Place conference, northern Ontario, Canada 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Participated in a virtual conference for seniors in the northern region, and engaged in conversations about the study with practitioners and people with lived experience of young onset and rare dementias.
Year(s) Of Engagement Activity 2020
URL https://www.accelevents.com/e/AgeinginPlace#exhibitors
 
Description Virtual Rare and Young Onset Dementia Knowledge Exchange 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Over 100 people comprising people with lived experience, practitioners, researchers and students attended the virtual event with presentations on posterior cortical atrophy, young onset Alzheimer's disease and Lewy body dementia as well as a presentation from a community-based organization. The event contributed to spotlighting the unique experiences of young onset/rarer dementias, facilitating connections with third sector organizations, and highlighting the value of research to fill gaps in knowledge of these dementias.
Year(s) Of Engagement Activity 2020,2021
 
Description Webinar hosted by RNID and BRACE webinar 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact 100 people attended a talk on hearing loss and dementia
Year(s) Of Engagement Activity 2021
 
Description Webinar organized by Dementia Advocacy Canada for research in young onset and rare dementia, Canada 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Participated in a National Conversation about Young Onset Dementia and Rare Dementia. The aim was to discuss the importance of research in young onset and rare dementias. The discussions improved understanding of the need for research, how research informs interventions and advocacy and how to manage research fatigue.
Year(s) Of Engagement Activity 2021
 
Description Webinars (Early - Mid-stage Carers) 
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 Patients, carers and/or patient groups
Results and Impact Webinars for carers of people living with: Lewy Body Dementia, Posterior Cortical Atrophy, Primary Progressive Aphasia, Frontotemporal Dementia and familial forms of Frontotemporal Dementia and Alzheimer's Disease who consider themselves to be caring for somebody in the early to mid-stages of the disease
Year(s) Of Engagement Activity 2019,2020,2021
URL https://www.youtube.com/watch?v=Gcj7iIMZamY
 
Description Webinars (Familial Alzheimer's Disease) 
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 Patients, carers and/or patient groups
Results and Impact Webinars for people living with familial forms of Alzheimer's disease and their carers (e.g. children of parents with the condition, who may themselves be at-risk of inheriting the condition)
Year(s) Of Engagement Activity 2019,2020,2021
URL https://www.youtube.com/watch?v=gg7h-HPx8PA
 
Description Webinars (Frontotemporal Dementia) 
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 Patients, carers and/or patient groups
Results and Impact Webinars for people caring for those diagnosed with Frontotemporal dementia
Year(s) Of Engagement Activity 2019,2020,2021
URL https://www.youtube.com/watch?v=BGdX-dFD6hc
 
Description Webinars (Lewy Body Dementia) 
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 Patients, carers and/or patient groups
Results and Impact Quarterly webinars for people living with a diagnosis of Lewy Body Dementia
Year(s) Of Engagement Activity 2019,2020,2021
URL https://www.youtube.com/watch?v=f1ti8xgVL4A
 
Description Webinars (Posterior Cortical Atrophy) 
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 Patients, carers and/or patient groups
Results and Impact Webinars for people living with Posterior Cortical Atrophy and their carers
Year(s) Of Engagement Activity 2019,2020,2021
URL https://www.youtube.com/watch?v=W29xvjfFI-4
 
Description Webinars (Primary Progressive Aphasia) 
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 Patients, carers and/or patient groups
Results and Impact Webinars for people living with Primary Progressive Aphasia and their carers
Year(s) Of Engagement Activity 2019,2020,2021
URL https://www.youtube.com/watch?v=TTp2jOwhXtA
 
Description Webpage disseminating the Culture Connections project 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Webpage explaining the Culture Connections project - a Pilot Study of Online Art Conversations as a Tool to Support Psychological Wellbeing in People Living with or Alongside Rare Forms of Dementia
Year(s) Of Engagement Activity 2021
URL https://www.ucl.ac.uk/grand-challenges/case-studies/2020/oct/culture-connections
 
Description Wigmore Hall Rare Dementias & how to support peoples challenges 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Industry/Business
Results and Impact Trish O'Hara gave a talk on rare dementias and how to support people's challenges to a group of 10 Wigmore Hall staff.
Year(s) Of Engagement Activity 2021
 
Description Wildfowl and Wetlands Trust - RDS Introduction talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Third sector organisations
Results and Impact Presentation to Charity - Wellbeing Officers about Rare Dementia Support
Year(s) Of Engagement Activity 2021
 
Description World FTD Utd Global Conversation on Dementia Support 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Nikki Zimmermann and Jill Walton gave a talk to an international audience of 1000 people at the World FTD Utd Global Conversation on Dementia Support
Year(s) Of Engagement Activity 2021
 
Description World FTD Utd Global Conversation- Male FTD Carers 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Nikki Zimmermann, Mary Pat Sullivan and Adetola Grillo gave a talk on Male FTD Carers to an international audience of 1000 people at the World FTD Utd Global Conversations forum
Year(s) Of Engagement Activity 2021
 
Description World FTD Utd: Supporting Families with FTD Talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Nikki Zimmermann gave a talk to 300 health professionals, students and people living with dementia at the World FTD Utd event, talking about Supporting Families with FTD
Year(s) Of Engagement Activity 2020
 
Description YDNetwork - (Raritea) - Rare Dementia 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Nikki Zimmermann gave a talk to 100 carers, health professionals and people living with dementia at YDNetwork - (Raritea)
Year(s) Of Engagement Activity 2021
 
Description YOAD support group webinars 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Live webinars for people and carers affected by YOAD covering topics such as creative activities, clinical updates, adaptations at work, and conversations about member's experience Talks were followed by a live Q&A panel, and resources were mailed out to members the following week along with invitations to take part in research.
Year(s) Of Engagement Activity 2021,2022
URL https://www.youtube.com/watch?v=wCX3eizzKlw&list=PLQd2DImjcCRKDKcw4Lu96anJ9QT-cAFhh&ab_channel=RareD...
 
Description YouQuest newsletter feature story on Knowledge Exchange event, Canada 
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 The newsletter of a grassroots organization for people living with young onset dementia featured our Knowledge Exchange event in their newsletter, which helped to promote the study
Year(s) Of Engagement Activity 2020
URL https://drive.google.com/file/d/1sBPHYZnq1KmmOg21TRNs26KPwuqHNB1U/view
 
Description Young Onset Dementia Knowledge Exchange Webinar 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact This event aims to raise awareness of rare forms of dementia (e.g. frontotemporal dementia, posterior cortical atrophy, primary progressive aphasia) which occur in about a quarter of people living with dementia. These forms of dementia are normally young in onset (under 65 years old). A rare dementia diagnosis brings with it a set of unique and complex challenges, yet there is a widespread lack of understanding and a shortage of dedicated resources to support people affected by these conditions. This event also contributes to conversations around building on our current strengths to innovate various forms of support for people living with dementia and their families.

Hosted by Nipissing University in collaboration with Rare Dementia Support, a UK based service working to support people affected by five rare dementia conditions, and the Alzheimer Society of Sudbury Manitoulin North Bay and District, this event is a knowledge dissemination/patient and public involvement activity of the Rare Dementia Support (RDS) Impact Study, a five-year research project collaboration between University College London (UCL), Nipissing University and Bangor University, led by Professor Sebastian Crutch of the Dementia Research Centre, UCL. This is the first major study of its kind, and will examine the specific challenges, support needs and care preferences of people affected by a rare dementia, and the value of support groups, such as that provided by Rare Dementia Support.

This event is offered free and will be of interest to people living with dementia, family care partners, health and social care practitioners, students and researchers
Year(s) Of Engagement Activity 2020
URL https://www.youtube.com/watch?v=DS_GCZxWil0&list=PLf1AQLDjjyid8csPa3aAocnS2KhNt-gaD