DETERMIND: DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their family carers
Lead Research Organisation:
University of Sussex
Department Name: Brighton and Sussex Medical School
Abstract
Context of the research
Dementia is one of the most common and serious disorders we face with over 800,000 affected in the UK, costing £23billion annually. Negative impacts on those with dementia and their families are profound. There are emerging data that there are major inequalities in care for dementia driven by factors that include: ethnicity, whether your care is self-funded or paid for by local authorities, and whether you are diagnosed earlier or later in the illness. DETERMIND is designed to address critical, fundamental, and as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care, and therefore the quality of life, of those with dementia and their carers.
Aims and objectives
Our overall aim is to explore and understand inequalities in dementia care and what drives good and bad quality of life, outcomes and costs for people with dementia and their carers following diagnosis. We do this to identify things that we can change to improve outcomes for them. We will investigate how outcomes and costs vary by content and time of diagnosis, individual circumstances, and with varying health and social care. To do this we have designed a programme of research with 7 complementary workstreams (WS):
WS1: Recruitment and follow-up of the DETERMIND cohort - We will recruit 900 people with dementia and their carers in the 3 months following diagnosis and follow them up closely for 3 years obtaining high quality data on service use, costs and outcomes including quality of life.
WS2: Inequalities in use of dementia care - We will investigate the extent of inequalities in access to dementia care, unmet need for care, impact of unmet need and barriers to addressing inequalities and unmet needs.
WS3: Relationship between use and costs of services and outcomes - We will investigate relationships between use and costs of services and outcomes for people with dementia and carers.
WS4: Experience of self-funders of care - We will investigate the experience of people with dementia and their family carers as self-funders of care and to compare this and their outcomes and costs with those the council funds.
WS5: Understanding decision-making by people with dementia and carers - We will seek to understand the processes by which life-plan decision-making occurs and what influences decision-making by people with dementia and their carers.
WS6: Effect of diagnostic stage and services on outcomes- We will investigate the impacts of earlier or later diagnosis and subsequent provision of post diagnostic treatment and care on quality of life and other outcomes for people with dementia and their carers.
WS7 - Programme management and Theory of Change guided research development, coordination and promotion of impact - We will develop, organise and deliver the WSs so they work together to generate data that answers critical questions, and the strategy and actions needed to translate them into better systems and services for people with dementia and carers.
Potential benefits
During the life of the programme, first analysing baseline results, and then with the follow-up of the 900 people with dementia and their carers over 3 years, we will build an evidence base where services and practice are currently largely based on assertion or custom and practice. The 7 WSs will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and factors that help or hinder living well with dementia.
Dementia is one of the most common and serious disorders we face with over 800,000 affected in the UK, costing £23billion annually. Negative impacts on those with dementia and their families are profound. There are emerging data that there are major inequalities in care for dementia driven by factors that include: ethnicity, whether your care is self-funded or paid for by local authorities, and whether you are diagnosed earlier or later in the illness. DETERMIND is designed to address critical, fundamental, and as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care, and therefore the quality of life, of those with dementia and their carers.
Aims and objectives
Our overall aim is to explore and understand inequalities in dementia care and what drives good and bad quality of life, outcomes and costs for people with dementia and their carers following diagnosis. We do this to identify things that we can change to improve outcomes for them. We will investigate how outcomes and costs vary by content and time of diagnosis, individual circumstances, and with varying health and social care. To do this we have designed a programme of research with 7 complementary workstreams (WS):
WS1: Recruitment and follow-up of the DETERMIND cohort - We will recruit 900 people with dementia and their carers in the 3 months following diagnosis and follow them up closely for 3 years obtaining high quality data on service use, costs and outcomes including quality of life.
WS2: Inequalities in use of dementia care - We will investigate the extent of inequalities in access to dementia care, unmet need for care, impact of unmet need and barriers to addressing inequalities and unmet needs.
WS3: Relationship between use and costs of services and outcomes - We will investigate relationships between use and costs of services and outcomes for people with dementia and carers.
WS4: Experience of self-funders of care - We will investigate the experience of people with dementia and their family carers as self-funders of care and to compare this and their outcomes and costs with those the council funds.
WS5: Understanding decision-making by people with dementia and carers - We will seek to understand the processes by which life-plan decision-making occurs and what influences decision-making by people with dementia and their carers.
WS6: Effect of diagnostic stage and services on outcomes- We will investigate the impacts of earlier or later diagnosis and subsequent provision of post diagnostic treatment and care on quality of life and other outcomes for people with dementia and their carers.
WS7 - Programme management and Theory of Change guided research development, coordination and promotion of impact - We will develop, organise and deliver the WSs so they work together to generate data that answers critical questions, and the strategy and actions needed to translate them into better systems and services for people with dementia and carers.
Potential benefits
During the life of the programme, first analysing baseline results, and then with the follow-up of the 900 people with dementia and their carers over 3 years, we will build an evidence base where services and practice are currently largely based on assertion or custom and practice. The 7 WSs will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and factors that help or hinder living well with dementia.
Planned Impact
DETERMIND is designed to generate findings that will lead to substantial improvement in quality of life for its primary beneficiaries, people with dementia and their carers. It will do this by generating unique new information on inequalities in dementia care, the outcomes and effects of diagnostic and post-diagnostic care, and on how that care is accessed, so that better services can be developed and delivered nationwide. Our meaningful involvement of people with dementia and their carers at all stages in the research will mean the programme and its impact will be co-produced with its primary beneficiaries. This will maximise the magnitude, speed and wide-ranging relevance of impact.
Further beneficiaries are those that provide, plan and purchase services for people with dementia. There is a real hunger for good quality information on how best to provide services, and on what people with dementia and their carers can do to live well with dementia. We will therefore work continuously throughout the programme to interpret and communicate emerging findings and to discuss implications with all potential beneficiaries Our communication will be framed and organised by our workstream structure: inequalities; outcomes and costs; effect of funder-type; decision-making; and stage at diagnosis and differing post-diagnostic care. During the life of the programme, first analysing baseline data, and then with the sequential delivery of follow-up quantitative data and the results of the embedded workstreams analyses and qualitative studies, we will build an evidence base where services and practice are currently largely based on assertion or custom and practice.
Professional staff will be key beneficiaries of our study. We will convey our findings to the wide range of staff who work with those with dementia. These will include: GPs and practice staff, nurses and therapy staff in community health services, social care staff including those working in care homes and home-based care, staff who support family carers, hospital medical, nursing and other staff, and staff and volunteers working in other relevant services such as housing and community organisations. Findings on how people with dementia and their carers experience diagnosis and post-diagnostic support, their views on the quality of care they receive compared to needs, and their comments on gaps in information, care and support service will be very valuable for professionals. Such increased understanding of the lived experiences of people with dementia will allow them to improve the quality and equity of the care they provide.
We will also promote our findings to health and social care commissioners and service providers including: CCGs, local authorities, NHS Trusts, social care providers and providers of supported housing, e.g. to feed into STPs. We will produce outcomes-based evidence on inequalities in service access and funding arrangements, and how support can be improved through different post-diagnostic care pathways, and the challenges of doing so. Our findings will highlight what is working well in terms of positive outcomes for people with dementia and carers, what works less well, what needs to be improved and, by highlighting successful diagnostic and post-diagnostic care pathways, how improvements could be made and with what resource consequences.
Finally, our study is designed to produce evidence to inform national and local policy discussion. Our findings on how care pathways could be improved will be valuable evidence for future national and international dementia strategy and carer strategy updates, and for local implementation. We will ensure this evidence reaches DHSC, NHS England and other ALBs, the LGA, ADASS, and other national stakeholder agencies through our existing close links with them. The Alzheimer's Society is a key partner on this application and we will work with them to enable maximum impact and benefit from this programme.
Further beneficiaries are those that provide, plan and purchase services for people with dementia. There is a real hunger for good quality information on how best to provide services, and on what people with dementia and their carers can do to live well with dementia. We will therefore work continuously throughout the programme to interpret and communicate emerging findings and to discuss implications with all potential beneficiaries Our communication will be framed and organised by our workstream structure: inequalities; outcomes and costs; effect of funder-type; decision-making; and stage at diagnosis and differing post-diagnostic care. During the life of the programme, first analysing baseline data, and then with the sequential delivery of follow-up quantitative data and the results of the embedded workstreams analyses and qualitative studies, we will build an evidence base where services and practice are currently largely based on assertion or custom and practice.
Professional staff will be key beneficiaries of our study. We will convey our findings to the wide range of staff who work with those with dementia. These will include: GPs and practice staff, nurses and therapy staff in community health services, social care staff including those working in care homes and home-based care, staff who support family carers, hospital medical, nursing and other staff, and staff and volunteers working in other relevant services such as housing and community organisations. Findings on how people with dementia and their carers experience diagnosis and post-diagnostic support, their views on the quality of care they receive compared to needs, and their comments on gaps in information, care and support service will be very valuable for professionals. Such increased understanding of the lived experiences of people with dementia will allow them to improve the quality and equity of the care they provide.
We will also promote our findings to health and social care commissioners and service providers including: CCGs, local authorities, NHS Trusts, social care providers and providers of supported housing, e.g. to feed into STPs. We will produce outcomes-based evidence on inequalities in service access and funding arrangements, and how support can be improved through different post-diagnostic care pathways, and the challenges of doing so. Our findings will highlight what is working well in terms of positive outcomes for people with dementia and carers, what works less well, what needs to be improved and, by highlighting successful diagnostic and post-diagnostic care pathways, how improvements could be made and with what resource consequences.
Finally, our study is designed to produce evidence to inform national and local policy discussion. Our findings on how care pathways could be improved will be valuable evidence for future national and international dementia strategy and carer strategy updates, and for local implementation. We will ensure this evidence reaches DHSC, NHS England and other ALBs, the LGA, ADASS, and other national stakeholder agencies through our existing close links with them. The Alzheimer's Society is a key partner on this application and we will work with them to enable maximum impact and benefit from this programme.
Publications
Ardle R
(2023)
Identifying modifiable psychosocial outcomes to maintain physical ACTIVity and promote independence in DEMentia: the ActivDem study
in Alzheimer's & Dementia
Baxter K
(2023)
The role of uncertainty in planning for self-funded social care for older people with a diagnosis of dementia
in Ageing and Society
Colclough C
(2023)
Emotion-focused dyadic coping styles used by family carers of people with dementia during the COVID-19 pandemic.
in Dementia (London, England)
Dixon J
(2022)
'Pushing back': People newly diagnosed with dementia and their experiences of the Covid-19 pandemic restrictions in England
in International Journal of Geriatric Psychiatry
Farina N
(2020)
DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers (DETERMIND): A protocol paper.
in International journal of geriatric psychiatry
Gridley K
(2023)
Standardised data collection from people with dementia over the telephone: A qualitative study of the experience of DETERMIND programme researchers in a pandemic.
in Dementia (London, England)
Gridley K
(2024)
How do quantitative studies involving people with dementia report experiences of standardised data collection? A narrative synthesis of NIHR published studies.
in BMC medical research methodology
Hicks B
(2022)
A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers
in Alzheimer's and Dementia: Translational Research & Clinical Interventions
Hicks, B
(2023)
Using digital technologies to facilitate social inclusion during the COVID-19 pandemic: Experiences of co-resident and non-co-resident family carers of people with dementia from DETERMIND-C19
in International Journal of Geriatric Psychiatry
Title | 'Pushing Back' against the threat of a 'shrinking world' |
Description | A short YouTube Video was created to promote the research findings from a DETERMIND-C19 publication that explored how people with dementia experienced the covid pandemic and the measures they took to fight back against the potential of a shrinking world. |
Type Of Art | Film/Video/Animation |
Year Produced | 2022 |
Impact | The video has been viewed by the general public |
URL | https://www.youtube.com/watch?v=VCAOp8U0euQ |
Description | DETERMIND is a prospective longitudinal cohort study designed to address critical, fundamental, and as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. This novel study examines inequalities and inequities in post-diagnostic dementia care and what drives good and bad quality of life, outcomes and costs for people with dementia and their carers following diagnosis. Over the forthcoming years, it will identify aspects of the care pathway that can be changed and provide evidence-based recommendations for improving the quality of care, and therefore the quality of life, of people with dementia and their carers. DETERMIND is on-going and so our achievements to date are still emerging. However by the end of March 2023, we recruited over 940 newly diagnosed (within the past six months) people with dementia and their carers onto the study. This makes us one of the largest cohort studies currently running within the UK, which is exploring the post-diagnostic care journey for people with dementia and their carers. Previously, in conjunction with our linked DETERMIND-C19 work, we have drawn on the data collected from our DETERMIND participants recruited pre-pandemic (around 260 people with dementia and their carers) to generate knowledge that was crucial for understanding how to support people with dementia and their carers during any future pandemics or periods of national crisis (see Key Findings Report for DETERMIND-C19 UKRI project). Moving forward, over the next year, we plan to follow-up our entire cohort and analyse the baseline dataset from our 940 participants to provide important preliminary insights into peoples' experiences of navigating the diagnosis process, accessing formal care services and social care funding, coping with dementia, and making important care decisions in collaboration with their family members. Furthermore, we will monitor and compare the life quality and service use of people diagnosed pre and post COVID-19 to elicit any long-term impacts of the pandemic and examine any inequalities that may have been exacerbated. |
Exploitation Route | To date, aside from our DETERMIND-C19 work, the outcomes specifically from DETERMIND are still emerging. Over the forthcoming year, once our baseline data has been analysed, we envisage being in a position to contribute substantially to dementia care policy and practice. However, in the interim period, we have enabled other approved researchers to access our DETERMIND cohort to enhance their work within dementia care. This includes supporting the ASCOT (Adult Social Care Outcome Tool) study, based at University of Kent, to trial their toolkit on people with early stage dementia in DETERMIND. The data collected from this will be used to refine the toolkit prior to publication for use nationally. We have also opened up our DETERMIND cohort for use by two other funded research projects. The NIHR funded 'CareTek' study has surveyed carers on DETERMIND with regards to their on-going use of digital Information and Communication Technology (ICT) to support their well-being and the care they provide to the person with dementia. These findings will be valuable in helping us to better understand and address the UK 'digital divide' by exploring the challenges and facilitators that carers of people with dementia may encounter when using ICT within their caring role. The NIHR Advanced Fellowship project 'ActivDem' seeks to longitudinally monitor the activity levels of people with dementia within DETERMIND. This will provide important information on the interactions between physical activity levels and psychological and social well-being for people with dementia. It will also outline ways that we can support people to remain physically active and independent for as long as possible following a diagnosis of dementia; this is a key component of UK policy directives. Finally, we have three on-going PhD studies. This ensures DETERMIND is facilitating the generation of new knowledge as well as supporting the academic development of early career researchers so they can contribute to the dementia care agenda. Two of the PhDs, funded by the University of Sussex, are exploring dyadic coping mechanisms in people with dementia and their carers to highlight ways people living with the condition and their family members can be supported to come to terms with the diagnosis. The final PhD examines the experiences of people with dementia who identify as LGBTQ+ when receiving a diagnosis of dementia and accessing formal health and social care services. These marginalised populations have been rarely considered within dementia care research and so DETERMIND will be well placed to support the generation of new knowledge that can contribute to improvements in policy and practice. |
Sectors | Communities and Social Services/Policy Healthcare |
Description | Findings have been presented at conferences and factored into the development of services and policy for people with dementia and their carers. |
First Year Of Impact | 2023 |
Sector | Healthcare |
Impact Types | Societal Policy & public services |
Description | Alzheimer's Association Expert Panel |
Geographic Reach | North America |
Policy Influence Type | Participation in a guidance/advisory committee |
Description | Brighton and Sussex Medical School PhD Studentship |
Amount | £60,000 (GBP) |
Organisation | University of Sussex |
Sector | Academic/University |
Country | United Kingdom |
Start | 09/2024 |
End | 09/2027 |
Description | Brighton and Sussex Medical School PhD Studentships |
Amount | £60,000 (GBP) |
Organisation | University of Sussex |
Sector | Academic/University |
Country | United Kingdom |
Start | 09/2023 |
End | 09/2026 |
Description | CareTek - Use of ICT by carers of people living with dementia |
Amount | £267,055 (GBP) |
Funding ID | 102645/CM/LSEMK-P159 |
Organisation | National Institute for Health Research |
Sector | Public |
Country | United Kingdom |
Start | 09/2020 |
End | 09/2023 |
Description | NIHR Advanced Fellowship |
Amount | £426,994 (GBP) |
Funding ID | NIHR301677 |
Organisation | National Institute for Health Research |
Sector | Public |
Country | United Kingdom |
Start | 11/2021 |
End | 10/2024 |
Title | Delivering standardised quantitative measures over the phone with people with dementia and their carers |
Description | Following the onset of the pandemic our research methods changed from face-to-face visits to telephone and virtual platform interviews with people with dementia and their carers. Through reflection with our DETERMIND researchers we have developed guidance that can inform best practice on how to maintain good data quality when delivering remote interviews with people with dementia and their carers. This includes providing prompt cards that can be followed by people with dementia when undertaking telephone interviews. Our findings will be published within a paper and we aim to use them as part of a collaboration with other NIHR/ESRC funded research studies to develop best practice guidance on conducting research with people with dementia and their carers during the pandemic. |
Type Of Material | Improvements to research infrastructure |
Year Produced | 2022 |
Provided To Others? | No |
Impact | This work is still in progress |
Title | DETERMIND Baseline dataset |
Description | We have now collected the largest dataset currently in the UK that examines the post-diagnostic care experiences of people with dementia and their carers immediately after receiving a diagnosis of dementia. The baseline cohort consists of 940 people with dementia and 750 carers. We will continue to follow the cohort once a year until the end of 2024. The data will provide an understanding of their care trajectory over the 3 years post diagnosis. |
Type Of Material | Database/Collection of data |
Year Produced | 2023 |
Provided To Others? | No |
Impact | We are in the process of publishing a series of papers from the baseline cohort dataset. These will be high impact papers that are likely to inform research, policy and practice. The datset will be publicly available at the end of the DETERMIND research. |
Description | ASCOT study |
Organisation | University of Kent |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | We are working with the University of Kent to support the ASCOT study. This aims to develop an Adult Social Care Outcome Study toolkit suitable for people with early stage dementia. We are supporting the recruitment of people with dementia to trial the toolkit and feedback information via in-depth interviews. This data can be used to refine the toolkit prior to publication for use nationally. |
Collaborator Contribution | Our partners are researchers at the University of Kent who will be running the participant interviews and refining the ASCOT toolkit. |
Impact | This is working with Social Care Research Team |
Start Year | 2022 |
Description | Alzheimer Association Expert Panel |
Organisation | Alzheimer's Association |
Country | United States |
Sector | Charity/Non Profit |
PI Contribution | Members of the DETERMIND Programme were invited to participate in an expert panel arranged by the American Alzheimer's Association. The panel discussed the definition of 'person-centred care' and how it can be applied moving forward in the dementia care agenda. The panel was attended by around 20 multi-discliplinary experts working within the field of dementia care. |
Collaborator Contribution | Drawing on preliminary findings from our DETERMIND-C19 and DETERMIND projects we were able to provide expert opinions on the advancement of the person-centred care agenda as we move out of the pandemic. This information was used to inform the future work of the Alzheimer's Association. |
Impact | The collaboration was multi-discliplinary consisting of medical professionals, psychologists, social science researchers and psychiatrists alongside policy researchers from the Alzheimer's Association. |
Start Year | 2023 |
Description | "Alzheimer disease- a challenge for the contemporary society, medical, psychological and social research and intervention" International conference in Cluj-Napoca |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Dr Ben Hicks gave a keynote presentation on the DETERMIND project at the Cluj-Napoca International conference in Romania. The conference was entitled: "Alzheimer disease- a challenge for the contemporary society, medical, psychological and social research and intervention" and was attended by national and international researchers working within the dementia field as well as local policy makers and people with dementia and their carers. The presentation provided an opportunity to promote the project across Europe and open discussions around developing the DETERMIND project and potentially establishing similar cohorts outside of England. |
Year(s) Of Engagement Activity | 2019 |
URL | https://alzheimer2019.medical-congresses.ro/en/ |
Description | Alzheimer Research UK South Coast conference |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Postgraduate students |
Results and Impact | Around 40 undergraduate and PhD students as well as other academics attended the event to present on their research at a 2-day workshop. This led to discussions throughout the two days as well as potential collaborations to move the research forward. |
Year(s) Of Engagement Activity | 2023 |
Description | Alzheimer's Association Exprt Panel |
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 | Members of the DETERMIND Programme were invited to attend an expert panel of multi-disciplininary professionals to discuss the definition and role of 'person-centred care' within the dementia care agenda. The panel took place as part of ther AAIC conference in Amsterdam in July 2023. Around 15 experts from various professional backgrounds including medicine, social science, psychiatry and psychology attended the panel. The lively discussions helped to inform the future work of the Alzheimer's Association. |
Year(s) Of Engagement Activity | 2023 |
URL | https://aaic.alz.org/highlights2023.asp |
Description | Alzheimer's Europe Conference |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Members of the DETERMIND team were asked to give a series of presentations at the Alzheimer's Europe conference. This is one of the largest dementia care conferences in Europe. The presentations were well received and various academics have approached the DETERMIND team to collaborate on future funding bids. |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.alzheimer-europe.org/conferences/past-conferences/2023-Helsinki?language_content_entity=... |
Description | Alzheimer's Research UK talk |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Postgraduate students |
Results and Impact | Presented a talk on my research with Determind at the ARUK Networking Conference, primarily to other post grad students and early career researchers. Afterwards, the research goals and methods were discussed along with suggestions for development |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.alzheimersresearchuk.org/research/for-researchers/network-centres/south-coast-network-ce... |
Description | Big on hiding emotions in Japan: cross cultural evidence on expressive suppression and age as predictors of wellbeing |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Public/other audiences |
Results and Impact | This was a public lecture given virtually to outline secondary research that has been undertaken to inform the DETERMIND programme, specifically regarding decision making processes in people with dementia and their carers (workstream 5). The presentation was delivered to academics, practitioners and the general public and the discussions that were sparked afterwards will contribute towards the theoretical models that are being developed in workstream 5. |
Year(s) Of Engagement Activity | 2021 |
Description | Care Home and Home Care Forums |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | Dr Ben Hicks gave two presentations; one at the Sussex Care Home Forum providers and the other at the Home Care Forum providers. These outlined the DETERMIND project and ways that the providers could promote the research to potentially eligible participants. Ben held informal discussions following the event to identify the most appropriate means to contact eligible participants. |
Year(s) Of Engagement Activity | 2019 |
Description | Centre for Dementia Studies Internal Conference |
Form Of Engagement Activity | Participation in an open day or visit at my research institution |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Dr Ben Hicks and various colleagues from the DETERMIND Programme presented their preliminary findings from the project at an Open Day led by the Centre for Dementia Studies in Brighton and Sussex Medical School. The hybrid event was delivered face-to-face and online and was attended by a range of personnel including academics, students, practitioners and charities. The event was designed to promote the range of work beign undertaken by the Centre for Dementia Studies and sparked many questions and discussions afterwards. |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.bsms.ac.uk/about/events/2023/03-29-dementia-research-conference-2023.aspx |
Description | Community event |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Professional Practitioners |
Results and Impact | A member of the research team presented the DETERMIND work at a local networking event for dementia practitioners and carers. They discussed the DETERMIND project and some of the recent findings, as well as ways the local community could support the work through advertising it to potential participants. The research was identified as important for the local area. |
Year(s) Of Engagement Activity | 2022 |
Description | D-C19: Impact of pandemic on QoL of DETERMIND cohort |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | The presentation was given as part of the Centre for Dementia Studies at Brighton and Sussex Medical School yearly conference, and focused both on the DETERMIND and DETERMIND-C19 studies. This was a national conference that was virtually attended by academics, practitioners, policy makers and people living with dementia and their carers. The presentation sparked conversations and discussions around the research, particularly as it demonstrated that the Quality of Life for people with dementia and their carers during the pandemic had not decreased as anticipated. The research provided insight into how quality of life had been maintained by these populations during this unprecedented time. |
Year(s) Of Engagement Activity | 2021 |
URL | https://www.bsms.ac.uk/about/events/2021/02-03-dementia-research-conference.aspx |
Description | DETERMIND Participant conference |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Study participants or study members |
Results and Impact | The DETERMIND Programme ran a workshop for their Sussex, Surrey and Kent participants to attend and hear about the preliminary findings of the project. Inaddition to this, the participants were provided the opportunity to input into the research and inform its development moving forward. The workshop was well received and plans are underway to run a further two workshops for DETERMIND participants residing in London and Newcastle regions. |
Year(s) Of Engagement Activity | 2023 |
Description | DETERMIND Protocol |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | DETERMIND was presented virtually at the Alzheimer's Disease International. This is the largest International dementia conference that is attended by policy makers, practitioners, academics and people living with dementia and their carers. The research was selected for a live verbal presentation with a questions and discussion session that immediately followed it. There was a lot of interest in the research and discussions were help around future collaborations. |
Year(s) Of Engagement Activity | 2020 |
URL | https://adi2020.org/ |
Description | DETERMIND Update: Examining care provision post-pandemic |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | DETERMIND researchers presented at the online Centre for Dementia Studies annual conference. This was attended by around 850 delegates over two days. The presentation reported on the findings from the DETERMIND and DETERMIND-C19 studies and examined their implications for the post-pandemic care pathway. The audience consisted of practitioners, academics, students and people living with dementia and their carers. The presentation sparked discussion afterwards as well as interest in the guidance that was created for dementia practitioners as a result of the project findings. |
Year(s) Of Engagement Activity | 2022 |
URL | https://www.bsms.ac.uk/about/events/2022/02-23-dementia-research-conference-2022.aspx |
Description | DETERMIND and DETERMIND-C19 research overview |
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 | The objective of the workshop was to promote scientific exchange between European and Chinese researchers working on COVID-19-related topics, who are funded by respectively European research agencies and by the NSFC. Participants were able to engage in scientific discussions with peers and establish contacts for possible future collaboration. The networking will provide opportunities to develop collaborations to extend the DETERMIND research programme in the future. |
Year(s) Of Engagement Activity | 2020 |
URL | https://scienceeurope.org/what-s-going-on/ |
Description | DETERMIND: A brief introduction |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Public/other audiences |
Results and Impact | Presentation given for the Institute for Lifecourse Development outlining the DETERMIND programme of research. The presentation was attended by academics, practitioners and the general public and sparked interest in the research and discussions around progressing the work in the future. |
Year(s) Of Engagement Activity | 2021 |
Description | Dementia Research Seminar |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | Dr Ben Hicks gave a talk about the DETERMIND project as part of a wider event aimed at publicising the work of the Centre for Dementia Studies. The event was attended by local practitioners, students, general public and people with dementia and their carers. The presentations were also posted online so could be viewed by people located further afield. Following the presentations, discussions were held around promoting the DETERMIND project throughout Sussex and identifying the most appropriate means to engage with eligible participants. |
Year(s) Of Engagement Activity | 2019 |
URL | https://www.sussexpartnership.nhs.uk/seminar-programme |
Description | ECR Day at Brighton and Sussex Medical School |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Postgraduate students |
Results and Impact | A member of the DETERMIND research team was invited to present at the Brighton and Sussex Medical School Early Career Researcher event. The event was attended by a number of ECRs and was a great opportunity to present on the findings of the DETERMIND and DETERMIND-C19 projects. |
Year(s) Of Engagement Activity | 2022 |
Description | ESRC dementia event |
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 | Dr Ben Hicks spoke at an ESRC event that discussed how researchers could involve people with dementia within their research, and particularly those from underresearched communities. The workshop was well received and provided useful information that could be taken forward by the research teams involved. |
Year(s) Of Engagement Activity | 2023 |
Description | Engagement with local groups and practitioners |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Study participants or study members |
Results and Impact | Throughout 2019 and 2020, the DETERMIND research team have attended a range of local carers' groups as well as memory services and clinics to promote the research and engage with eligle participants. This has enabled us to outline the project to professionals and carers' groups as well as discuss the most appropriate means to ensure that we can access eligible participants. |
Year(s) Of Engagement Activity | 2019,2020 |
Description | Impact of COVID-19 on people with dementia and their carers: differences between rural and urban populations |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | An online presentation examining the impact of COVID-19 on the Quality of Life of people with dementia and their carers. The presentation drew on data obtained from the DETERMIND-C19 cohort and specifically examined the differences between rural and urban dwelling populations. The presentation was part of the RaDAR Summit 2021 (https://cchsa-ccssma.usask.ca/ruraldementiacare/), which was hosted by Universities in Canada and was attended by International audiences including practitioners, researchers, policy makers and people living with dementia and their carers. The presentation provided a starting point to discuss the potential to establish a project similar to DETERMIND-C19 within rural areas of Canada. |
Year(s) Of Engagement Activity | 2021 |
URL | https://cchsa-ccssma.usask.ca/ruraldementiacare/summit/summit-2021-archive.php |
Description | InPulse magazine article |
Form Of Engagement Activity | A magazine, newsletter or online publication |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | An overview of the DETERMIND project was provided in the Brighton and Sussex Medical School magazine and online. This is distributed to all university staff and students at Sussex and Brighton as well as to local practitioners. The article aimed to publicise the project as well as outline the various means that eligible participants could engage with the research. Following the article Dr Ben Hicks received emails asking for further details of the project. |
Year(s) Of Engagement Activity | 2019 |
URL | https://www.bsms.ac.uk/_pdf/about/news/pulse/bsms-mag-autumn-2019-web.pdf |
Description | Inequalities in the dementia care experience during the COVID-19 pandemic |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Postgraduate students |
Results and Impact | DETERMIND researchers were invited to provide an expert lecture for Masters students who were studying at the Centre for Dementia Studies at Brighton and Sussex Medical School. Many of these students were dementia practitioners that were studying alongside their work. The lecture drew on the DETERMIND-C19 findings to provide an overview of the inequalities and challenges that arose in the dementia care pathway for people with dementia and their carers during the pandemic. Following this, there was a discussion on how the students/practitioners could address some of these challenges within their practice moving out of the pandemic. |
Year(s) Of Engagement Activity | 2021 |
Description | 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 member of the research team orally presented on the Impact of COVID-19 on the life quality and loneliness of people with dementia and their carers: Findings from the DETERMIND and DETERMIND-C19 studies. The presentation was attended in person by around 100 academics, practitioners and policy makers, and a further 400 people attended online. The abstract is visible with the Alzheimer's Disease Internal Conference handbook for others to now read. There was a lot of interest in the talk and potential for future collaborations. |
Year(s) Of Engagement Activity | 2022 |
URL | https://adiconference.org/files/general/ADI-2022-Abstract-Book.pdf |
Description | Lecture to Neuroscience students |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Undergraduate students |
Results and Impact | Dr Ben Hicks provided a lecture to undergraduate neuroscience students at Brighton and Sussex Medical School. Drawing on the preliminary findings of DETERMIND, he discussed the impact of a timely and early diagnosis of dementia on the life quality and well-being of people with dementia and their carers. These novel findings sparked discussions afterwards between the students regarding the current policy position of encouraging people to seek a early diagnosis of dementia. |
Year(s) Of Engagement Activity | 2023 |
Description | Lecture to post-graduate dementia students |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Postgraduate students |
Results and Impact | Dr Ben Hicks drew on DETERMIND findings to give a talk to post-graduate dementia Masters students around the inequalities and inequities in the post-diagnostic care pathway. The lecture was well received and students followed up with further questions and requests for more information on the project. Two students have also undertaken volunteering roles on the project as a direct result of the talk. |
Year(s) Of Engagement Activity | 2023 |
Description | NIHR Dementia Researcher Podcast |
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 | Supporters |
Results and Impact | A podcast was undertaken with Dr Ben Hicks and Dr Laura Hughes (both from the Centre for Dementia Studies) and led by Megan Calvert-O'Hare from the NIHR Dementia Researcher team. The podcast discussed supporting quality-of-life post-diagnosis for people with dementia and focussed specifically on the DETERMIND research project and its potential impact for policy and practice as well as the work of the Centre for Dementia Studies more generally. The podcast was released internationally and accessible to the general public, policy makers and practitioners as well as other researchers within the dementia field. |
Year(s) Of Engagement Activity | 2019 |
URL | https://www.dementiaresearcher.nihr.ac.uk/podcast-quality-of-life-after-a-dementia-diagnosis/ |
Description | National Alzheimer Conference in Bucharest |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Dr Ben Hicks gave a keynote speech at the National Alzheimer Conference in Bucharest in Romania. The conference was hosted by The Romanian Association of Psychiatry and Psychotherapy and The Romanian Alzheimer Society. Ben gave a presentation on the DETERMIND project, outlining the research protocol and providing an up to date account of participant recruitment. Following the presentation, discussions were held on how the work could be translated into a Romanian context. |
Year(s) Of Engagement Activity | 2020 |
URL | https://formulare.ralcom.ro/doc/RLC-ALZ2020-AMP-Anunt-website.pdf |
Description | Podcast interview for the Retirement Cafe |
Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Public/other audiences |
Results and Impact | Dr Ben Hicks gave a podcast interview to the Retirement Cafe. The podcast is hosted in Bournemouth but has a national reach. Ben Discussed the DETERMIND work and the impact of the findings for post-pandemic dementia care. The podcast has received a number of comments from listeners regarding the discussions and part of the interview has been written up as part of a book. |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.amazon.co.uk/Retirement-Cafe-Handbook-Accelerators-Successful/dp/1739410300 |
Description | Poster about DETERMIND's reflections on the data collection process (through linked PhD) at the NIHR SSCR conference |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | A poster outlining interim findings of a linked DETERMIND PhD exploring the process of data collection from people with dementia was presented at the NIHR SSCR annual conference. Individual research practitioners engaged one to one with the researcher, and the poster was made more widely available online. |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.sscr.nihr.ac.uk/event/nihr-sscr-annual-conference-2023/ |
Description | Presentation at Alzheimer's Research UK event |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Other audiences |
Results and Impact | A member of the research team attended a two day conference held by Alzheimer's Research UK South Coast Network to discuss the findings of the DETERMIND and the DETERMIND-C19 projects. The event was attended by academics and post-graduate students with an active role in dementia research. |
Year(s) Of Engagement Activity | 2022 |
URL | https://www.alzheimersresearchuk.org/research/for-researchers/network-centres/south-coast-network-ce... |
Description | Presentation to the York Biomedical Research Institute on collecting data from people with dementia (linked DETERMIND PhD) |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Postgraduate students |
Results and Impact | Presented to multi-disciplinary members of the York Biomedical Research Institute about the interim findings of a linked DETERMIND PhD about the process of data collection from people with dementia in large cohort studies |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.york.ac.uk/biomedical-research-institute/ |
Description | Public volunteering event |
Form Of Engagement Activity | Participation in an open day or visit at my research institution |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Public/other audiences |
Results and Impact | Some of the DETERMIND team participated in a volunteering day for Alzheimer Research UK to promote dementia awareness and discuss the DETERMIND research project. The activities generated a lot of interest from the general public and it was a great opportunity to discuss the DETERMIND research. |
Year(s) Of Engagement Activity | 2022 |
Description | Series of talks at universities in Australia, New Zealand and Singapore |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Other audiences |
Results and Impact | Throughout December 2023-February 2024, Dr Ben Hicks, DETERMIND Programme Manager, visited universities in Sydney, Melbourne, Auckland and Singapore to discuss the DETERMIND research. Ben gave an overview of the project and the preliminary findings from both the main DETERMIND cohort and the DETERMIND-C19 work. Around 70 academics and post-graduate students attended the talks, and dicussions are now underway to establish collaborations between the universities involved and the DETERMIND programme. These collaborations may involve the different countries setting up a similar cohort with input from the DETERMIND programme as well as smaller scale projects where academics from the various universities undertake similar analysis to that being carried out by DETERMIND to examine cross cultural similarities and differences. The first piece of work will look to establish what a 'timely diagnosis' of dementia means for people living with dementia within the different countries. |
Year(s) Of Engagement Activity | 2023,2024 |
Description | Short video to promote research findings |
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 | Two DETERMIND researchers produced a short video outlining the key findings from their DETERMIND-C19 work. This video was developed with support from LSE University and was then distributed on Twitter and YouTube to engage the general public. |
Year(s) Of Engagement Activity | 2022 |
URL | https://www.youtube.com/watch?v=VCAOp8U0euQ |
Description | Teaching medical students |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Undergraduate students |
Results and Impact | A member of our research team gave a lecture to undergraduate medical students on the DETERMIND project and its current findings. The lecture was attended by around 25 undergraduate students who were interested and engaged with the work |
Year(s) Of Engagement Activity | 2022 |
Description | Using standardized measures with People 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 | The presentation was given virtually to the NIHR School for Social Care Research by a PhD student associated with the DETERMIND programme. The presentation explored her work investigating the use of standardised quantitative measures with people with dementia. The discussions helped to inform her research moving forward as well as identify further areas for exploration. This information will help to enhance the DETERMIND programme and the theoretical knowledge that it seeks to develop. It also supported the research team to identify further areas around researchers experiences of delivering the research tools that need to be taken into account as part of DETERMIND and so help to improve the quality of the data collected as part of the project. |
Year(s) Of Engagement Activity | 2020 |