The MARQUE project: Managing Agitation and Raising QUality of Life. A project to improve quality of life in people with moderate or severe dementia
Lead Research Organisation:
University College London
Department Name: Division of Psychiatry
Abstract
In the UK about 820,000 people live with dementia with numbers increasing rapidly as the population ages. The Government's "Challenge on Dementia" aims to drive improvements in health and care, create dementia friendly communities and improve research.
Responding to this challenge, our MARQUE programme "Managing Agitation and Raising Quality of Life", aims to increase knowledge about dementia, agitation and personhood. We will use the programme to:
-develop our theoretical knowledge of dementia, agitation, how people with dementia and their carers experience these and their relationship to citizenship and personhood.
-reduce agitation in people with moderate and severe dementia and thus increase quality of life, through the known link between agitation and quality of life.
-mentor existing and train new researchers, to build a legacy of trained dementia researchers.
Agitation is common, occurring in about 50% of people with moderate or severe dementia every month, is distressing for them and for those around them. The symptoms include restlessness, pacing, shouting or even verbal or physical aggression and signify unmet need. The person with dementia may be in pain, hungry, thirsty, needing comfort or bored but unable to know or explain this. Our group (including Shirley Nurock, an Alzheimer's Society carer) has completed a funded literature review on interventions to reduce agitation. Our vision is to build on this evidence, advancing knowledge, including how to effectively implement findings to improve quality of life for those with dementia.
It is a bold and ambitious proposal by a multi-professional team, our family carer partners and participating national and international groups. The team, who have previously worked together successfully, comprise social sciences, medicine, nursing and psychology. A DeNDRoN PPI focus group advised on and approved our proposal. We are partnered by Alzheimer's Society who are leading PPI, care home groups and voluntary and parliamentary groups.
The research will involve observing and interviewing a wide range of people with dementia and those who care for them at home, in care homes and in hospitals (including end of life) in order to better understand how agitation is currently managed, barriers to good practice and how care could be improved.
We will use this information (with our literature review findings) to develop, test and implement a manual to train staff about how best to reduce agitation and improve quality of life in care homes. It will be tested in a randomised controlled trial in 14 care homes. Our vision is to make this as central to care as good eating and hygiene.
Our programme at home will lead to a pilot home intervention, including massage, found to be effective in our review.
In addition, we will further develop another manual, to improve people with dementia's end of life for, including "terminal agitation" (comprising restlessness, anxiety, sleeplessness and shortness of breath around the time of dying). This manual will be piloted in four nursing homes (and a control home) and staff, family and residents asked whether it is helpful, practical and feasible.
Our programme lasts 5 years but we expect carers and people with dementia to start to benefit from 2 years as we begin testing. It will improve our understanding of current practice and the challenges for family and paid carers. We will have programmes to put into practice across the UK to help manage agitation, including at home, in care homes and at the end of life. We will know what works, is cost effective and how to implement.
This will improve quality of life for people with dementia and their carers wherever they live and will help guide research and practice. Our partners will then work with us to ensure national publicity and implementation. This will include incorporation into care home and hospital inductions and feedback to Care Quality Commission as a potential new care standard.
Responding to this challenge, our MARQUE programme "Managing Agitation and Raising Quality of Life", aims to increase knowledge about dementia, agitation and personhood. We will use the programme to:
-develop our theoretical knowledge of dementia, agitation, how people with dementia and their carers experience these and their relationship to citizenship and personhood.
-reduce agitation in people with moderate and severe dementia and thus increase quality of life, through the known link between agitation and quality of life.
-mentor existing and train new researchers, to build a legacy of trained dementia researchers.
Agitation is common, occurring in about 50% of people with moderate or severe dementia every month, is distressing for them and for those around them. The symptoms include restlessness, pacing, shouting or even verbal or physical aggression and signify unmet need. The person with dementia may be in pain, hungry, thirsty, needing comfort or bored but unable to know or explain this. Our group (including Shirley Nurock, an Alzheimer's Society carer) has completed a funded literature review on interventions to reduce agitation. Our vision is to build on this evidence, advancing knowledge, including how to effectively implement findings to improve quality of life for those with dementia.
It is a bold and ambitious proposal by a multi-professional team, our family carer partners and participating national and international groups. The team, who have previously worked together successfully, comprise social sciences, medicine, nursing and psychology. A DeNDRoN PPI focus group advised on and approved our proposal. We are partnered by Alzheimer's Society who are leading PPI, care home groups and voluntary and parliamentary groups.
The research will involve observing and interviewing a wide range of people with dementia and those who care for them at home, in care homes and in hospitals (including end of life) in order to better understand how agitation is currently managed, barriers to good practice and how care could be improved.
We will use this information (with our literature review findings) to develop, test and implement a manual to train staff about how best to reduce agitation and improve quality of life in care homes. It will be tested in a randomised controlled trial in 14 care homes. Our vision is to make this as central to care as good eating and hygiene.
Our programme at home will lead to a pilot home intervention, including massage, found to be effective in our review.
In addition, we will further develop another manual, to improve people with dementia's end of life for, including "terminal agitation" (comprising restlessness, anxiety, sleeplessness and shortness of breath around the time of dying). This manual will be piloted in four nursing homes (and a control home) and staff, family and residents asked whether it is helpful, practical and feasible.
Our programme lasts 5 years but we expect carers and people with dementia to start to benefit from 2 years as we begin testing. It will improve our understanding of current practice and the challenges for family and paid carers. We will have programmes to put into practice across the UK to help manage agitation, including at home, in care homes and at the end of life. We will know what works, is cost effective and how to implement.
This will improve quality of life for people with dementia and their carers wherever they live and will help guide research and practice. Our partners will then work with us to ensure national publicity and implementation. This will include incorporation into care home and hospital inductions and feedback to Care Quality Commission as a potential new care standard.
Planned Impact
The MARQUE project will impact on: i) people with dementia and their family carers through better, more cost-effective services to enhance wellbeing. Caring for people with dementia costs £16 billion/year; expected to triple over 20 years ii) those implementing health policy and care, and iii) academic capacity, increasing dementia academics capacity.
1. Patient impact
People with dementia and their family carers are the primary intended beneficiaries, so we will develop relevant outputs (knowledge, interventions, implementation plans) which have their support. Our PPI input was integral to the project's development, and will continue throughout.
The project will have short-term impact, as participants in research tend to benefit whether in the intervention group or not. If the interventions succeed, those receiving them will benefit. Additionally, we will achieve medium and long term benefits, as we expect our results to improve agitation and quality of life of people with dementia. Agitation is one of the commonest neuropsychiatric symptoms of dementia and is very distressing for the person with agitation, and interferes with their functioning and relationships. Our submitted systematic and health economic review shows that people with dementia and significant agitation cost more than double in care costs than those with dementia without agitation. That is a mean of £30 000 more per year each (£60 000 versus £28000). The scale of possible economic impact is therefore measured in £billions, as the cost of dementia is projected to reach around £70 billion in the near future. It should help to reduce premature admission to care homes, more specialist placements, inappropriate admissions to NHS hospitals and hospital stay length.
2. Public health and policy impact
The project's outputs include new approaches to personhood in dementia, how to involve family carers in collecting data on people with dementia living at home, "quality of death", and influences on agitation and quality of life in care homes. We will engage voluntary, private, public and political stakeholders to increase and influence evidence based public policy making. The International Longevity Centre, an independent charitable think-tank, specialising in how society needs to respond to ageing, will lead on disseminating results to politicians, policy-makers, voluntary sector and industry. Existing relationships with key stakeholders (NHS, Admiral Nurses, Marie Curie and the AS) will be used to communicate findings and help deliver changes. Impact will also be achieved through publications, conference presentations and informing the Care Quality Commission of the results and their potential for appraising homes. We have talked to Professor Burns, dementia tsar, about the project and our manuals will be hosted on the DH website. The findings will also be useful in primary care- GL has worked with DH and AS to write primary care algorithms on managing agitation in dementia.
3) Academic capacity
We will build dementia research capacity by supervising PhDs in the programme and mentoring early and mid-career dementia researchers. Other benefits are: knowledge transfer about concepts of personhood in dementia, how to involve family carers in collecting data, "quality of death", and what influences agitation and quality of life in care homes. The research team brings together academics across disciplines, including social sciences (sociology, statistics, health economics, health care evaluation, social and health policy) mental health, older people's medicine, psychology, implementation science and palliative care to cascade findings. Findings will be applicable to academics in these fields and government bodies, charities national policy units, universities and other research centres. Our international partners from USA and Australia will shape and be conduits for international implementation. Their involvement will ensure worldwide academic advancement.
1. Patient impact
People with dementia and their family carers are the primary intended beneficiaries, so we will develop relevant outputs (knowledge, interventions, implementation plans) which have their support. Our PPI input was integral to the project's development, and will continue throughout.
The project will have short-term impact, as participants in research tend to benefit whether in the intervention group or not. If the interventions succeed, those receiving them will benefit. Additionally, we will achieve medium and long term benefits, as we expect our results to improve agitation and quality of life of people with dementia. Agitation is one of the commonest neuropsychiatric symptoms of dementia and is very distressing for the person with agitation, and interferes with their functioning and relationships. Our submitted systematic and health economic review shows that people with dementia and significant agitation cost more than double in care costs than those with dementia without agitation. That is a mean of £30 000 more per year each (£60 000 versus £28000). The scale of possible economic impact is therefore measured in £billions, as the cost of dementia is projected to reach around £70 billion in the near future. It should help to reduce premature admission to care homes, more specialist placements, inappropriate admissions to NHS hospitals and hospital stay length.
2. Public health and policy impact
The project's outputs include new approaches to personhood in dementia, how to involve family carers in collecting data on people with dementia living at home, "quality of death", and influences on agitation and quality of life in care homes. We will engage voluntary, private, public and political stakeholders to increase and influence evidence based public policy making. The International Longevity Centre, an independent charitable think-tank, specialising in how society needs to respond to ageing, will lead on disseminating results to politicians, policy-makers, voluntary sector and industry. Existing relationships with key stakeholders (NHS, Admiral Nurses, Marie Curie and the AS) will be used to communicate findings and help deliver changes. Impact will also be achieved through publications, conference presentations and informing the Care Quality Commission of the results and their potential for appraising homes. We have talked to Professor Burns, dementia tsar, about the project and our manuals will be hosted on the DH website. The findings will also be useful in primary care- GL has worked with DH and AS to write primary care algorithms on managing agitation in dementia.
3) Academic capacity
We will build dementia research capacity by supervising PhDs in the programme and mentoring early and mid-career dementia researchers. Other benefits are: knowledge transfer about concepts of personhood in dementia, how to involve family carers in collecting data, "quality of death", and what influences agitation and quality of life in care homes. The research team brings together academics across disciplines, including social sciences (sociology, statistics, health economics, health care evaluation, social and health policy) mental health, older people's medicine, psychology, implementation science and palliative care to cascade findings. Findings will be applicable to academics in these fields and government bodies, charities national policy units, universities and other research centres. Our international partners from USA and Australia will shape and be conduits for international implementation. Their involvement will ensure worldwide academic advancement.
Publications
Mukadam N
(2019)
Population attributable fractions for risk factors for dementia in low-income and middle-income countries: an analysis using cross-sectional survey data.
in The Lancet. Global health
Ma'u E
(2021)
Differences in the potential for dementia prevention between major ethnic groups within one country: A cross sectional analysis of population attributable fraction of potentially modifiable risk factors in New Zealand.
in The Lancet regional health. Western Pacific
Mukadam N
(2020)
Effective interventions for potentially modifiable risk factors for late-onset dementia: a costs and cost-effectiveness modelling study
in The Lancet Healthy Longevity
Livingston G
(2017)
Dementia prevention, intervention, and care
in The Lancet
La Frenais.F
(2017)
Journal of the American Geriatrics Society
in Temporal trends in analgesic use in LTC facilities: a systematic review of international prescribing
Rapaport P
(2017)
BMJ Open
in Systematic review of the effective components of psychosocial interventions delivered by care home staff to people with dementia
Robertson S
(2020)
Comparing proxy rated quality of life of people living with dementia in care homes.
in Psychological medicine
Robertson S
(2017)
International Psychogeriatrics
in Proxy rated quality of life of care home residents with dementia: a systematic review
Description | Agitation closely related to quality of life for people in care homes but not to staffing level or environment. Neglect is common but physical abuse is rare. Quality of life is rated systematically differently by family and paid carers. Staff and family ratings of quality of life are only weakly correlated. Median staff scores are higher than family's Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia. Paid carer dysfunctional coping did not predict resident quality of life. Levels of resident agitation were consistently high and related to lower quality of life, over 16 months. Most care staff for long-term care residents with dementia experience low or moderate burnout levels We found that many care staff are not identified as persons in their own right by their employing institutions, and that there is a general lack of acknowledgment of the moral work of caring that occurs within formal care work. This oversight can reduce the complex relationships of care work to a series of care tasks, challenges care workers' self-worth and self-efficacy, and impede their efforts to deliver person-centred care. Staff struggled with the paradox of trying to connect with the personhood of residents while seeing the person as separate to and, therefore, not responsible for their behaviours. Staff often felt powerless, frightened and overwhelmed, and their responses were constrained by care home structures, processes and a culture of fear and scrutiny |
Exploitation Route | We are continuing the research -more results to come. One student is doing a further PhD based on our data. We have further grants to work on longer term RCT results. |
Sectors | Communities and Social Services/Policy Healthcare |
URL | https://www.dementiaresearcher.nihr.ac.uk/discussing-the-marque-study/ |
Description | • One research assistant (RA) started DClinPsych in University of Liverpool after completing a PhD in the programme and aims to be an academic clinical psychologist specialising in dementia. She won a research poster competition in UCL brain science 2016 and an International Psychogeriatric Junior Research Award 2016 • One RA has moved to DclinPsych in University of East Anglia, another to University of Surrey and a third to Nottingham and intend to continue work in dementia • One RA has submitted a PhD within MARQUE and has a civil service job in policy and dissemination. • One RA started medical school in Nottingham in 2017 and one started medical school in Warwick in 2018. Their aims are to train as psychiatrists and probably specialise in dementia Impact and linked work We have a website and a twitter account and have disseminated our work through blogs (including ESRC) and podcasts as well as papers. Our paper on abuse in care homes was widely reported eg Telegraph and Independent. Our paper and RCT on agitation in care homes has been widely read (IN lancet psychiatry) and contributes to the conclusions in the 2020 Lancet commission There is a linked ESRC PhD on care homes and sleep with a paper published. This PhD has now been completed and more papers published in 2021 with more in press We are analysing and publishing data on longitudinal course of neuropsychiatric symptoms and one on apathy has been provisionally accepted and will be presented at the ADI conference in June |
First Year Of Impact | 2016 |
Sector | Communities and Social Services/Policy,Education,Healthcare |
Impact Types | Cultural Societal |
Description | 'Added value' |
Amount | £55,000 (GBP) |
Organisation | Economic and Social Research Council |
Sector | Public |
Country | United Kingdom |
Start | 06/2018 |
End | 09/2018 |
Description | Collaborations in Leadership in Applied Health Research Care |
Amount | £1 (GBP) |
Organisation | National Institute for Health Research |
Sector | Public |
Country | United Kingdom |
Start | 09/2015 |
End | 06/2018 |
Description | International Networking |
Amount | £11,211 (GBP) |
Organisation | Economic and Social Research Council |
Sector | Public |
Country | United Kingdom |
Start | 08/2018 |
End | 03/2019 |
Description | NIHR CLAHRC North Thames |
Amount | £21,144 (GBP) |
Organisation | National Institute for Health Research |
Department | NIHR CLAHRC North Thames |
Sector | Private |
Country | United Kingdom |
Start | 03/2019 |
End | 10/2019 |
Description | Prime Ministers Challenge |
Amount | £3,200,000 (GBP) |
Funding ID | ES/L001780/1 |
Organisation | Economic and Social Research Council |
Sector | Public |
Country | United Kingdom |
Start | 03/2014 |
End | 02/2019 |
Description | The Economic case for dementia prevention |
Amount | £63,780 (GBP) |
Organisation | Economic and Social Research Council |
Sector | Public |
Country | United Kingdom |
Start | 02/2018 |
End | 04/2018 |
Description | UCL, Bloomsbury and East London Doctoral Training Partnership |
Amount | £68,904 (GBP) |
Organisation | Economic and Social Research Council |
Sector | Public |
Country | United Kingdom |
Start | 09/2017 |
End | 09/2020 |
Title | Agitation in people living with dementia in care homes: MARQUE intervention single-blind cluster RCT |
Description | Quantitative database of baseline and 6-month follow up data from people living with dementia in 20 care homes. Also includes family carers and care staff. Primary outcomes agitation (CMAI) and quality of life (DEMQOL). Contains health economic data also. |
Type Of Material | Database/Collection of data |
Year Produced | 2019 |
Provided To Others? | Yes |
Impact | This database is one of the largest on agitation and dementia in the UK. Through the use of proxy assent procedures, data were collected concerning people lacking the capacity to consent to research, making this a representative database. |
URL | https://data.mendeley.com/datasets/dfgb64759j/1 |
Title | Data from care workers, the unacknowledged persons in person-centred care: A secondary qualitative analysis of UK care home staff interviews |
Description | Qualitative data linked to a paper |
Type Of Material | Database/Collection of data |
Year Produced | 2018 |
Provided To Others? | Yes |
Impact | Paper accessed 1062 times to date |
URL | http://discovery.ucl.ac.uk/10050933/. |
Title | Health economics data from work stream 2 |
Description | 16-month longitudinal database, collected over 5 time points (baseline, 4, 8, 12, 16 months). Client Service Receipt Inventory DEMQOL EQ-5D |
Type Of Material | Database/Collection of data |
Year Produced | 2019 |
Provided To Others? | Yes |
Impact | The largest and first database of its kind in English care homes |
URL | https://doi.org/10.6084/m9.figshare.7708016.v1. |
Title | Managing agitation and raising quality of life (MARQUE) qualitative interviews (WS5) |
Description | These data are 22 semi-structured interviews with health care professionals in both hospital and care home settings focusing on dementia care. Caring for people living with severe dementia was the focus. The aim of the research to enhance our understanding of agitation in people with dementia who may also be unwell. Interviews show how staff interpret agitation in people nearing the end of life, how this impacted on how they responded and on the quality of care received by the individual. Data were gathered using a semi-structured interview schedule, all face-to-face at their place of work - care home or acute medical ward in hospital. |
Type Of Material | Database/Collection of data |
Year Produced | 2019 |
Provided To Others? | No |
Impact | None that we are aware of. |
URL | http://www.mendeley.com |
Title | Managing agitation and raising quality of life (MARQUE) qualitative interviews family carers (WS4) |
Description | 18 face-to-face semi-structured interviews with family carers of people living with moderate to severe dementia still living at home. Respondents were asked to describe their experiences of caring for the person living with dementia and especially coping around agitation or distress behaviours. 11 respondents had a spousal relationship with the person living with dementia; 6 were children or children-in-laws; and 1 was a sibling. The age range of respondents is 35 to 84 years old. 14 recorded their ethnicity as white, one as Asian, three as black. 11 respondents were women. Two had been caring for the person living with dementia for more than 10 years; 6 for 1-3 years; 4 for 5-10 years; and 4 for 3- 5 years. 2 had been carers for less than a year at the time of interviewing. Interview schedule: Looking back, when did you first notice the signs of the memory problems? So, how were things ok before that? How have you found the experience of caring for .? Was there any help or support available to you at those times? Could you tell me a bit/ a bit more about situations related to your relative/friend's symptoms of agitation and dementia? When did your relative/friend start to show symptoms of agitation? How did this affect your experience as a carer What symptoms of agitation did you observe? What was it like for you? What was it like for your relative/friend? Were/ are there any particular ways you dealt/ deal with your experiences of agitated behaviour then/ now? Did you seek any help for managing the agitated behaviour? Looking back how do you feel about the episodes of agitated behaviour that occurred? Do you have any advice that you could give to people going through the same difficulties? Is there anything else that you want to mention about how you coped with your relative/friend's agitation? |
Type Of Material | Database/Collection of data |
Year Produced | 2019 |
Provided To Others? | Yes |
Impact | None that we are aware of. |
URL | http://www.mendeley.com |
Title | Managing agitation and raising quality of life: semi structured interviews with family carers of people living with dementia |
Description | 18 face-to-face semi-structured interviews with family carers of people living with moderate to severe dementia still living at home. Respondents were asked to describe their experiences of caring for the person living with dementia and especially coping around agitation or distress behaviours. 11 respondents had a spousal relationship with the person living with dementia; 6 were children or children-in-laws; and 1 was a sibling. The age range of respondents is 35 to 84 years old. 14 recorded their ethnicity as white, one as Asian, three as black. 11 respondents were women. Two had been caring for the person living with dementia for more than 10 years; 6 for 1-3 years; 4 for 5-10 years; and 4 for 3- 5 years. 2 had been carers for less than a year at the time of interviewing. Interview schedule: Looking back, when did you first notice the signs of the memory problems? So, how were things ok before that? How have you found the experience of caring for .? Was there any help or support available to you at those times? Could you tell me a bit/ a bit more about situations related to your relative/friend's symptoms of agitation and dementia? When did your relative/friend start to show symptoms of agitation? How did this affect your experience as a carer What symptoms of agitation did you observe? What was it like for you? What was it like for your relative/friend? Were/ are there any particular ways you dealt/ deal with your experiences of agitated behaviour then/ now? Did you seek any help for managing the agitated behaviour? Looking back how do you feel about the episodes of agitated behaviour that occurred? Do you have any advice that you could give to people going through the same difficulties? Is there anything else that you want to mention about how you coped with your relative/friend's agitation? |
Type Of Material | Database/Collection of data |
Year Produced | 2019 |
Provided To Others? | Yes |
URL | https://data.mendeley.com/datasets/s8wtptnhyc |
Description | international collaboration on Lancet commission on dementia - next one due 2024 but under review now |
Organisation | The Lancet |
Country | United Kingdom |
Sector | Private |
PI Contribution | I led this |
Collaborator Contribution | Partners all contributed |
Impact | Multi-disciplinary- psychiatry, epidemiology, geriatric medicine, public health, neurology, nursing, geenral physician Grant application -Australia asked for applications building on it NHS england middle aged check for dementia risk Change in US policy about dementia prevention and over the counter hearing aids MRC grant on data about risk Succesful application to Wellcome Trust Talks all over the world |
Start Year | 2017 |
Description | #MARQUE2019 dissemination & engagement stakeholder event |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Other audiences |
Results and Impact | 144 individual from over 65 organisations registered fro the event. Over 100 stakeholders attended, at 110 Rochester Row. Discussion and practice sharing was shared from stakeholders during two Q&A sessions - designed to be less academics talking, more stakeholder interaction. 70 responses were made to a pre-event question set using an engagement tool ("for you, what are the 'hot topics' in agitation and dementia?"). We have these saved to examine for any new ideas for future research or events. Over 1/3 of attendees participated in two engagement activities during the event, designed to capture their immediate thought in response to the two two panels of presentations and discussions. Twitter: #MARQUE2019 generated a lot of interest during the morning event and @MARQUEProject increased into followers from 970 to 988. 1 known (international) login to the Vimeo Livestreaming facility. Photography, filming and full audio were captured on the day - podcasts will be created, HeadQuote outputs of each speaker, and a short 2-3 min film of the event. |
Year(s) Of Engagement Activity | 2019 |
URL | https://ilcuk.org.uk/raising-quality-of-life-in-people-living-with-dementia-marque-report-launch/ |
Description | 16th Annual Meeting of the International College of Geriatric Psychoneuropharmacology & 5th International Congress on Psychiatry and the Neurosciences held in Athens, Greece |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Louise Marston attended this conference to talk about the MARQUE stream 2 findings. There were questions and interest in the stream 3 randomised controlled trial. |
Year(s) Of Engagement Activity | 2016 |
Description | AAIC conference London (Francesca La Frenais) |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Oral presentation about antipsychotic prescribing in MARQUE baseline cohort |
Year(s) Of Engagement Activity | 2017 |
Description | AAIC conference in London (Penny Rapaport) |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Poster: How do care home staff experience, understand and manage agitation in residents with dementia? A qualitative study |
Year(s) Of Engagement Activity | 2017 |
Description | AAIC stellite meeting (Gill Livingston) |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Gill Livingston spoke about findings about family carers for agitation at home |
Year(s) Of Engagement Activity | 2017 |
Description | Alzheimer's Association International Conference 2016 in Toronto |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Other audiences |
Results and Impact | Presented a poster to patients, carers, policy makers, funders, professionals about my PhD review at the worlds largest dementia conference. Sparked lots of interest in thesis work post review. |
Year(s) Of Engagement Activity | 2016 |
Description | Alzheimer's Society Annual Conference 2019 - poster 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 | Alzheimer's Society Annual Conference 2019. 21st May 2019 - poster presentation This was a two day conference 21-22 May 2019. On the 21st May there were 480 delegates and 50 speakers who attended. The conference was attended by academics, clinicians, researchers, policy makers, third sector employees and volunteers, Alzheimer Society Research Network members, family carers and people with dementia. I presented a poster disseminating findings from stream 4 of the MARQUE (Managing agitation and raising quality of life in dementia) project. There was a footfall of about 300-350 people viewing the posters and I spoke with approximately 30 people directly about the study. This included academics, researchers and family carers. A member of the Alzheimer Society Research Network and TIDE (together in dementia everyday) requested that the findings of the study be developed into a leaflet for family carers. This is something that Prof Gill Livingston and I plan to take forward. |
Year(s) Of Engagement Activity | 2019 |
URL | https://www.alzheimers.org.uk/dementia-professionals/conferences-and-events/alzheimers-society-annua... |
Description | Alzheimers Soceity National Research Conference |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Other audiences |
Results and Impact | Presented a poster to patients, carers, policy makers, funders, professionals about MARQUE. Sparked lots of interest in MARQUE and got feedback on direction of PhD. |
Year(s) Of Engagement Activity | 2015 |
Description | Claudia Cooper spoke at the AAIC conference in London |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Claudia Cooper spoke about abuse in a symposium |
Year(s) Of Engagement Activity | 2017 |
Description | Community of interest group for MARQUE |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Third sector organisations |
Results and Impact | Presentation of MARQUE results and discussion of their meaning |
Year(s) Of Engagement Activity | 2018 |
Description | Copenhagen consenus |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | We have starteds working towards international implementaion of our ideas regarding agitation in dementia We have written preliminary consenus documents to consider testing and using iin UK/Australia/USA/Sweden |
Year(s) Of Engagement Activity |
Description | Dementia Research- Past and Present |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Presented a poster at a conference |
Year(s) Of Engagement Activity | 2016 |
Description | Division of Psychiatry Research Seminar MARQUE Presentation |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Postgraduate students |
Results and Impact | Gill Livingston presented about MARQUE and the preliminary results from the baseline data in order to raise awareness of the study within the department and to receive feedback about the results. The presentation led to questions and an interesting discussion afterwards. |
Year(s) Of Engagement Activity | 2016 |
Description | ENRICH Conference |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Other audiences |
Results and Impact | Gave a talk to the enrich network presenting study outline and recruitment progress to date |
Year(s) Of Engagement Activity | 2015 |
Description | Establishing new links in Rhode Island at Brown University |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Had a meeting with a Professor of Health Services, Policy and Practice at Brown University School of Public Health. Also met the Associate Director of the Centre of Long term Quality and Innovation. Presented a departmental talk on MARQUE stream 2 and 3 with associated PhDs. Exchanged details with multiple professors in the department who were interested in multi collaboration. Relations have been made. |
Year(s) Of Engagement Activity | 2018 |
Description | European Association for Palliative Care |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Presented a poster with my PhD baseline results re analgesic and psychotropic medication - primarily clinicians who were interested in future publications from MARQUE |
Year(s) Of Engagement Activity | 2017 |
Description | Film for ENRICH about care homes |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | Yes |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | I think it has been part of teh activity leading to care home recruitment for this project Unclear |
Year(s) Of Engagement Activity | 2013 |
URL | http://enrichv2.c5990815.myzen.co.uk/research-community/understanding-care-homes.html |
Description | House of Lords policy dinner event |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Policymakers/politicians |
Results and Impact | This event was a dinner event at the House of Lords between research team and policy makers and politicians, business and charitable organisations. The purpose of the meeting was to build on what we now know from the MARQUE findings and propose future directions for policy for the ILC. Six researchers from the MARQUE team attended to dine with 28 guests, allowing got interaction between researcher and policy makers. The event lasted 3 hours and was Chaired by Baroness Greengross who used the event to invite comments and suggestions from the floor, following a presentation from Gill Livingston and a sector response from Martin Green. ILC staff minuted these conversations and noted the headline comments. There was discussion between diners as well as as a group as a whole. |
Year(s) Of Engagement Activity | 2019 |
Description | International Psychogeriatrics Association Congress |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Other audiences |
Results and Impact | Gave a talk about systematic review in the awards session and discussed thesis outline and context of MARQUE project. Generated interest and feedback |
Year(s) Of Engagement Activity | 2016 |
Description | International conference - Andrew Sommerlad |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Andrew Sommerlad presented on the topic 'Ethnic variations in dementia prevalence and care', so Naaheed and I both spoke to around 150 people (clinicians, academics, policymakers). My talk was on 'The effect of ethnicity on the accuracy of general hospital dementia records'. I made links with researchers in Boston about replicating this study in their data and examining recording of dementia in death certificates. b. Presented two posters: i. 'Hospitalisation Rates and Predictors in People with Dementia: A Systematic Review and Meta-Analysis' ii. 'Association of Social Network Contact with Risk of Dementia and Cognitive Decline: 28-Year Follow-up of the Whitehall II Cohort Study' |
Year(s) Of Engagement Activity | 2019 |
URL | https://eventpilotadmin.com/web/planner.php?id=AAIC19LITE |
Description | Juanita Hoe conference presentation to Alzheimer Eurpoe (#29AEC) |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Other audiences |
Results and Impact | Dr Hoe presented MARQUE work stream 4 findings: what carers found useful when their relative living with dementia had agitated behaviour. Questions were raised during the presentation and it was tweeted about by Dementia Carers Campaign Network (who have over 1000 followers), CONT-END (an EU financed project for research on end of life care in dementia). |
Year(s) Of Engagement Activity | 2019 |
Description | Kaiser Permanente Washington Health Research Institute entitled 'Hospitalization of people with dementia: problems and future directions' seminar Andrew sommerlad |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Meetings with Eric Larson and with 5 geriatricians exchanging ideas about research related to preventing hospitalisation. I will incorporate their ideas and would plan to include some - Elizabeth Phelan and Eric Larson - as collaborators on future postdoc fellowship applications with Andrew Sommerlad. Andrew met with Eric Larson, Shelly Gray and Arvind Ramaprasan to discuss cohort study examining associations of inappropriate prescribing with hospitalisation. |
Year(s) Of Engagement Activity | 2019 |
Description | MARQUE International Conference |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Other audiences |
Results and Impact | 54 people attended UCL for a 2 day MARQUE conference where members of the MARQUE team, collaborators and partner organisations presented on MARQUE progress and related topics. This sparked questions and discussions in the panel and during breaks and attendees reported increased interest in the subject areas. Plans were made to increase and improve relationships with partner organisations and decisions were made regarding how to proceed with MARQUE. |
Year(s) Of Engagement Activity | 2016 |
Description | MARQUE Poster Presentation at the Noclor Mental Health and Dementia Showcase: Analgesic and Psychotropic Medication in UK Care Homes |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | A poster presentation on Analgesic and Psychotropic Medication in UK Care Homes. The audience was primarily academic and they asked questions about the research objectives and current evidence base. People reported that they found the presentation informative and interesting. |
Year(s) Of Engagement Activity | 2016 |
Description | MARQUE Presentation in Belgium to Postgraduate Students |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Postgraduate students |
Results and Impact | MARQUE presentation by Francesca Le Frenais in Belgium to Postgraduate Students and Professional Practitioners at the COST Spring School about pain assessment in dementia. The purpose was to discuss current research and explore and encourage opportunities for collaboration. Francesca developed and maintained links with COST which has resulted in research collaboration opportunities being identified with a colleague in Prague. |
Year(s) Of Engagement Activity | 2015 |
Description | MARQUE discussed at family carer support group: Tom's Club in Harringey |
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 | A MARQUE researcher discussed the project at a family carer support group: Tom's Club in Harringey. 10 family carers and admiral nurses were there. Interest in the project was generated. |
Year(s) Of Engagement Activity | 2015 |
Description | MARQUE featured in Insight (NIHR) magazine (ENRICH article) |
Form Of Engagement Activity | A magazine, newsletter or online publication |
Part Of Official Scheme? | Yes |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Magazine article promted wide ranging interest and education. To be confirmed |
Year(s) Of Engagement Activity | 2015 |
URL | http://viewer.zmags.com/publication/1a10a1ed#/1a10a1ed/1 |
Description | MARQUE investigator presented at the British Society of Gerontology conference, Newcastle |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | MARQUE investigator presented at the British Society of Gerontology conference, Newcastle to generate awareness and interest. Approx 60 people (Researchers, Practitioners, Voluntary Sector) attended. much interest was generated. |
Year(s) Of Engagement Activity | 2015 |
Description | MARQUE investigator presenting at the Personhood, Agency and the Forth Age Symosium at IAGG-ER congress, Dublin Ireland |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | A MARQUE investigator presenting at the Personhood, Agency and the Forth Age Symosium at IAGG-ER congress, Dublin Ireland Approx 60 people attended (Researchers, Practitioners, Voluntary Sector). The talk generated much interest and discussion. |
Year(s) Of Engagement Activity | 2015 |
Description | MARQUE poster at UCL Brain Science symposium 2015 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Postgraduate students |
Results and Impact | Presented a poster internally at UCL and won award. Sparked interest in MARQUE project and shared recruitment progress to date which people were very impressed with. |
Year(s) Of Engagement Activity | 2015 |
Description | MARQUE talked about at Inside Government event |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | Spoke at an 'Inside Government' event to approx. 150 members of various business executives, researchers, health care professionals and organisations. The talk generated much interest and further questions. |
Year(s) Of Engagement Activity | 2015 |
Description | Meeting in Boston at Harvard University |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Met with a Professor of Medicine at Harvard Medial School and Senior Scientist at Hebrew Senior Life. Discussed international collaboration.part of the international collaboration grant |
Year(s) Of Engagement Activity | 2018 |
Description | Met with team in karolinska Institute |
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 | met with Karolinska institute and presented Marque and Lancet commission and discussed future collaboration. We intend to work together in future |
Year(s) Of Engagement Activity | 2018 |
Description | NIHR Trainee conference |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Other audiences |
Results and Impact | Presented a poster for NIHR conference on MARQUE project and PhD plans. Generated feedback and interest which helped me think about the potential clinical impact of my phd results. |
Year(s) Of Engagement Activity | 2015 |
Description | NIHR Trainee conference 2016 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Other audiences |
Results and Impact | Presented a poster internally at UCL and won award. Sparked interest in MARQUE project and shared recruitment progress to date which people were very impressed with. |
Year(s) Of Engagement Activity | 2016 |
Description | Presentation about MARQUE at the CRN/Noclor Mental Health and Dementia Research Showcase |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | Professor Gill Livingston presented on the background and progress of the MARQUE study and agitation in dementia. This provoked questions from the audiance about the efficacy of music therapy in managing agitation, and the role of medication. |
Year(s) Of Engagement Activity | 2016 |
URL | https://www.elft.nhs.uk/Events/Mental-Health-and-Dementia-Research-Showcase |
Description | Presentation at NIHR/ESRC Yearly Meeting |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Gill Livingston presented the preliminary results for MARQUE Stream 2. After the presentation it was suggested Gill make contact with another study looking at quality of life measures in dementia (PROMs). |
Year(s) Of Engagement Activity | 2016 |
Description | Presentation at UCL Conference - Clinical Psychology and Dementia |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | A MARQUE investigator presented the project's RCT intervention at the UCL Conference - Clinical Psychology and Dementia. Approx 180 Clinical Psychology trainees, associated faculty, practitioners and researchers were present - there was much debate and interest surrounding the trial and project. |
Year(s) Of Engagement Activity | 2015 |
Description | Presentation at UCL: School of Pharmacy wellbeing open day |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | A MARQUE investigator spoke at the Presentation at UCL: School of Pharmacy wellbeing open day. Approx 20 people attended (pharmacists, lay people, scientists). Talk genereated interest and further questions. |
Year(s) Of Engagement Activity | 2015 |
Description | Presentation at the AAIC conference in London |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Gill Livingston spoke about the MARQUE Project and the epidemiological findings in the care homes. |
Year(s) Of Engagement Activity | 2017 |
Description | Presentation by Amanda Leggett (international) |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Study participants or study members |
Results and Impact | 26 people attended the presentation from across different UCL departments and also other institutions. There were questions asked following Amanda's talk. |
Year(s) Of Engagement Activity | 2018 |
Description | Research Meets Practice |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | • bring together those the professionally care for people with dementia and researchers in dementia care. The meeting will focus on care home settings. • disseminate information about the current direction of dementia research. • to discuss current challenges and opportunities for research in care home settings to work towards a joint and applied research agenda going forward. • Identified opportunities for application of research in care homes • Development of new partnerships between researchers and practitioners |
Year(s) Of Engagement Activity | 2014 |
Description | Royal College of Psychiatrists Faculty of Old Age Psychiatry Conference Presentation |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Professor Gill Livingston presented at the Royal College of Psychiatrists Faculty of Old Age Psychiatry Annual Conference about MARQUE and managing agitation and raising quality of life in dementia. This prompted questions from the audience and resulted in increased awareness and interest in agitation in dementia. |
Year(s) Of Engagement Activity | 2016 |
URL | http://www.rcpsych.ac.uk/traininpsychiatry/conferencestraining/conferences/oldagefaculty2016.aspx |
Description | SXWRU Home Care Research Forum |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Presentation for the Home Care Research Forum, gave overview of MARQUW |
Year(s) Of Engagement Activity | 2017 |
Description | Speak to carers at the Alzheimer's society |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | Yes |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | talks sparked questions and discussion People asked to be more involved in the future and said they may be able to recruit care homes. Some said they felt much more optimistic. |
Year(s) Of Engagement Activity | 2014 |
Description | Speaking to Nightingale Hammerson care home |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Industry/Business |
Results and Impact | Talk about findings in marque and discussion about what large care home would implement |
Year(s) Of Engagement Activity | 2019 |
Description | Spoke to Australian Associaton of gerontology, Alice Springs |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | Yes |
Type Of Presentation | keynote/invited speaker |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Talk sparked questions and discussions and several delegates approached me later and asked about implementing START locally in Australia Several delegates approached me later and asked abouyt implementing START locally in Australia |
Year(s) Of Engagement Activity | 2015 |
URL | http://www.aag.asn.au/national-conference |
Description | Systematic review of management of agitation |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | Yes |
Type Of Presentation | Poster Presentation |
Geographic Reach | International |
Primary Audience | Public/other audiences |
Results and Impact | Many thousands of people attended the conference. Many wanted our results. Unfortunately we did not have them at that point ADL 2012 March Discussion of potential results informed our thinking |
Year(s) Of Engagement Activity | 2012 |
URL | http://www.adi2012.org/ |
Description | Tealk at royal college of psychiatrists annual conference |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Masterclass in neuropsychiatric symptoms. I presented on agitation |
Year(s) Of Engagement Activity | 2018 |
URL | https://www.rcpsych.ac.uk/traininpsychiatry/conferencestraining/internationalcongress2018.aspx |
Description | The annual Marie Curie Palliative Care Research Conference by Aisling Stringer |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Policymakers/politicians |
Results and Impact | Stream 5 poster, A qualitative study of family carer's attitudes towards agitation in people with moderate / severe dementia |
Year(s) Of Engagement Activity | 2017 |
Description | University of Michigan meeting to collaborate with a presentation |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Met with the faculty at the University of Michigan at the Programme for Positive Ageing. Gave a talk on MARQUE stream 2 and 3 with associated PhDs. |
Year(s) Of Engagement Activity | 2018 |
Description | Welcome Hub |
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 | Gill Livingston presented MARQUE data |
Year(s) Of Engagement Activity | 2017 |