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    CAREGIVERSPRO-MMD

    This study is Led by Dr. Emma Wolverson (Chief/Principal Investigator) of Humber NHS Foundation Trust and the University of Hull.

    CAREGIVERSPRO-MMD is a European funded research project to develop new ways to help people living with memory problems and their supporters. Humber NHS Foundation Trust is the UK site and recruitment began in July 2017. This study will develop and test ways that digital technology (including a tailored website) can make life better for people living with memory problems and the people who help them. Half of the people who volunteer to help will be randomised to the group that is given a free touch-screen computer (a tablet device) and training to use it, and will be visited by researchers every six months to find out whether the technology is helping them. No expertise in technology devices is required! Other countries involved in this research are Italy, Spain, France and Greece. This study is exploring whether the intervention can support people to retain their independence, improve quality of life, reduce caregiver stress and reduce costs to the healthcare system.

    Click here to go to the CAREGIVERSPRO-MMD website


    Journeying Through Dementia (JtD)

    This study is Led by Professor Gail Mountain of the University of Bradford (Chief Investigator) and Dr Chris Rewston is the local Principal Investigator for Humber NHS Foundation Trust. Prof Esme Moniz Cook (University of Hull) and Consultant Clinical Psychologist (Hon) is a co-investigator on this study.

    JtD is a randomised controlled trial, intended to determine the benefit of a self-management intervention for people in the early stages of dementia. This study aims to test the effectiveness and cost-effectiveness of a manualised, facilitator led, self-management intervention. This has been designed with the goal of improving the quality of life for people in the early stages of dementia by promoting self-efficacy and maintaining independence.

    Click here to view latest JtD newsletter


    Achieving Quality and Effectiveness in Dementia Using Crisis Teams (AQUEDUCT)

    This study is led by Professor Martin Orrell of the University of Nottingham (Chief Investigator) and Clare Hilton (Consultant Clinical Psychologist) is the local principal investigator for Humber NHS Foundation Trust. Professor Esme Moniz-Cook (University of Hull) and Consultant Clinical Psychologist (Hon) at Humber is a co-investigator for this programme. The study seeks to establish best practice for crisis teams working with people with dementia including the development of a resource kit that will train and guide crisis teams in how to provide best practice. Humber NHS Foundation Trust began recruiting into this study in December 2016.

    How Obligations, Preparedness and Eagerness influence wellbeing (Caregiving HOPE)

    The study is being carried out by the School of Dementia Studies at the University of Bradford, led by Dr Sahdia Parveen (Chief Investigator) and funded by the Alzheimer’s Society. Cathryn Hart is the local Principal Investigator at Humber NHS Foundation Trust.

    The Caregiving HOPE study aims to explore how obligations, willingness and preparedness to care influence wellbeing. Family members of people with dementia are invited to complete three questionnaires over a period of twelve months about their experiences. The findings from the research will be used to develop services to support and prepare people in the future.

    Click here to go to the Caregiving HOPE website


    Detecting Susceptibility Genes for Late-Onset Alzheimer’s disease (AD Genetics)

    AD-Genetics has been running under the supervision of Professor Julie Williams at Cardiff University School of Medicine. Dr Chris Rewston is the local Principal Investigator for Humber NHS Foundation Trust.

    Since 2004 Cardiff University have been collecting blood samples and interviewing people to try and understand more about how certain genes affect the likelihood of developing Alzheimer’s disease. So far over 3000 people have helped with this research and as a result they have been successful in finding many previously unknown genes that are involved in Alzheimer’s disease. Although they have begun to understand more about how genetics affect the risk of developing Alzheimer’s disease, there are still more genes to find and much more to understand about how these genes work and why people develop the disease before the age of 65.

    Humber NHS Foundation Trust is now inviting individuals with Alzheimers Disease to help with this research study. The individual must be willing to provide a blood sample and have a family member or friend who is also willing to participate. This will help search for environmental, biological and genetic factors that influence the progression of Alzheimer’s disease and other neurodegenerative disorders. We hope that this will translate into new treatments and better methods of diagnosis in the future. AD-Genetics commenced recruitment in Humber in March 2016.


    Effective Home Support in Dementia Care

    Led by Professor David Challis of the University of Manchester (Chief Investigator), this national study is part of a major programme of research funded by the NIHR. Cathryn Hart is the local Principal Investigator for Humber NHS Foundation Trust.

    The purpose of this research is to identify which packages of health and social care people with dementia and their families receive at home, and which are most cost effective and beneficial in terms of their health and wellbeing. It is hoped that the information gathered, through collecting data on service receipt and through completing outcome measure questionnaires such as the Bristol Activities of Daily Living Scale (BADLS), will help create more effective service delivery in the future. Data will be collected from study participants at two time points, six months apart. Humber NHS Foundation Trust began recruiting into this study in June 2016.

    Dementia Carers Instrument Development (DECIDE)

    This study is Led by Dr Penny Wright at the University of Leeds and Cathryn Hart is the local Principal Investigator at Humber NHS Foundation Trust. The study is funded by the Medical Research Council (MRC) and sponsored by the University of Leeds.

    The DECIDE study aims to develop a new, reliable and valid quality of life (QoL) measure for use with carers of people with dementia who are living in the community. In future it is hoped the questionnaire will be used to help staff in services be aware of carers’ needs, to help evaluate services or supports, and to inform policies. This study was completed at Humber in August 2017.

    Promoting Independence in Dementia (PRIDE)

    The PRIDE programme is a 5 year project to identify how social and lifestyle changes may help reduce the risk of developing dementia and disability. The team will use studies such as the English Longitudinal Study of Ageing in the UK, comparing it with equivalent projects in Europe and Brazil, to identify how lifestyle can affect dementia and vice versa. This will then inform a research programme to develop and evaluate an effective social intervention (e.g. physical activity, use of computers) to support independence and quality of life for people with early stage dementia and their carers. Prof Esme Moniz Cook (University of Hull) and Consultant Clinical Psychologist (Hon) is a co-investigator on this programme.

    ‘Talking about Memory’ study
    One phase of the PRIDE programme that Humber NHS Foundation Trust is currently involved in is the ‘Talking about Memory’ study, which aims to examine experiences people have regarding their memory. This study is recruiting people at various stages in the trajectory of dementia, including those without any memory problems, those referred to memory services, and those with a diagnosis of dementia. Dr Chris Rewston is the local Principal Investigator for Humber NHS Foundation Trust.

    Participants take part in interviews discussing various aspects of their lives, including the impact that changing memory ability can have on everyday living. A later stage of the study involves some of the participants, who are living with memory difficulties, being observed in their daily routine. It is hoped that the findings from this study will aid the development of an intervention aimed at supporting those with memory difficulties living in the community to remain socially independent. This phase of the PRIDE programme was completed at Humber in September 2017.

    Positive Psychology Outcome Measures (PPOM)
    Also within the PRIDE programme, this study is part of a PhD project which aims to understand more about which personal strengths impact on wellbeing. Cathryn Hart is the local Principal Investigator for Humber NHS Foundation Trust, and recruitment commenced in the Trust in July 2016.

    Two new questionnaires have been developed to assess levels of personal strengths, including hope, resilience, sociability and independence. Individuals diagnosed with dementia are invited to complete these new questionnaires, along with questions about wellbeing, to try and understand how personal strengths may improve quality of life for people with memory problems. This phase of the PRIDE programme was completed at Humber in May 2017.

    Click here for the paper that describes the development of the questionnaires which are now being tested in this study
    Click here for a paper on "Positive psychology outcome measures for family caregivers of people living with dementia"

    PRIDE Intervention Development and Feasibility
    This stage of the PRIDE research programme aims to develop and trial a social intervention for living well with dementia for those in the early stages and their carers. The manualised intervention being trialled is derived from a review of publications on psychological and social interventions in early stage dementia as well as the information collected from earlier PRIDE studies and aims to promote independence. The pilot of this trial (work package 3) was completed at Humber in September 2017.

    Click here to go to the PRIDE website


    Valuing Active Life In Dementia (VALID)

    VALID is a five year study funded by the National Institute for Health Research. Prof Esme Moniz Cook (University of Hull) and Consultant Clinical Psychologist (Hon) is a co-investigator and principal investigator for Humber on this trial.

    In the first development phase of the VALID study a number of Occupational Therapists (OTs) across Humber were trained to deliver this exciting intervention (known as COTiD-UK) to support people with mild to moderate dementia to maintain engagement with life. This initial phase was about developing the intervention and adapting it from the Netherlands version, where it originated, to fit with health care in the UK. More than 60 couples received the intervention in this phase.

    The next phase of the study is a randomised controlled trial to evaluate the intervention. In this stage, people who receive the intervention will be compared to those who receive usual care and services, to see if there are positive results for people with dementia and their carers/supporters from the intervention, or not. This phase of the VALID programme started in Humber in September 2014 and was completed in May 2017.

    Click here to go to the VALID website

    Click here to view latest VALID newsletter


    ACcess to Timely Formal Care (ACTIFCare)

    ACTIFCare is a European programme of research containing a number of studies funded by the EU Joint Programme - Neurodegenerative Disease Research (JPND).  Cathryn Hart is the local Principal Investigator for Humber NHS Foundation Trust.

    The ACTIFCare focus group study aims to analyse the pathways to care for people with dementia and their families to better understand the reasons for inequalities in access to healthcare across Europe and to understand the need for, access to, and use of formal care services at home. Humber NHS Foundation Trust was just one of two sites who took part in this stage of ACTIFCare for the UK, along with other sites in Germany, Ireland, Italy, The Netherlands, Norway, Portugal and Sweden. Following on from the focus group study a small number of people are interviewed in their own homes for the ACTIFCare cohort study.

    ACTIFCare commenced in Humber NHS Foundation Trust in Feb. 2015 and was completed in July 2016.

    Click here to view latest ACTIFCare newsletter


    Managing Agitation and Raising QUality of LifE in dementia (MARQUE)

    This study is funded by the ESRC and NIHR and led by University College London (Chief Investigator: Claudia Cooper). Cathryn Hart is the Local Collaborator for this study at Humber NHS Foundation Trust.

    The study is looking at the quality of life of care home residents with memory problems and staff coping strategies in dealing with agitation in people with dementia. We are recruiting residents with memory problems, their relatives and care staff. The study will involve collecting data from participants for 16 months and the results of the study will be used to develop an intervention to increase quality of life and reduce agitation in people with dementia.

    MARQUE commenced in two care homes in Hull and East Riding in Jan. 2015 and was completed in Dec. 2016.


    Using Patient Reported Outcome Measures to assess quality of life in dementia (PROMs)

    PROMs is a Department of Health funded project to help understand how people benefit from Memory Assessment Services. The project is being run by a research team based at the London School of Hygiene and Tropical Medicine (Chief Investigator: Sarah Smith) together with practitioners working in memory services, of which Hull Memory Clinic is one.

    The pilot study (known as the PROMs study) was launched in September 2013 and aimed to recruit 250 people with dementia and their lay carers across four sites in England. Both were asked to complete a health-related quality of life questionnaire during their first visit to the Memory Assessment Service. In Humber NHS Foundation Trust recruitment to this phase of the study completed in March 2014. We were the first site to reach our recruitment target and then went on to exceed the recruitment target.


    Evaluation of Memory Assessment Services (MAS)

    The MAS study is a continuation of the PROMs programme of research. Cathryn Hart is the Principal Investigator at Humber NHS Foundation Trust.

    This is an observational study (does not involve an intervention) which aims to evaluate different models of memory services in England in terms of health-related quality of life of the patient and their carer and also carer burden. Humber was one of 80 sites randomly selected from memory services within England. People who were newly referred to the Hull Memory Clinic (and their supporter) were asked to complete quality of life and service use questionnaires. The study commenced in Humber in September 2014 and is now complete. We were the first site in England to recruit to the study and the first to complete.
    Click here for a paper on "The cost of diagnosis and early support in patients with cognitive decline"
    Click here for a paper on "Is the effectiveness of memory assessment services associated with their structural and process characteristics?"


    Prevalence of Visual Impairment in Dementia (PrOVIDe)

    The PrOVIDe study was funded by the National Institute for Health Services Research and led by the College of Optometrists (Chief Investigator: Michael Bowen) to examine the eyes and eyesight of a large number of people with dementia. This study aimed to calculate the ‘prevalence of visual impairment’ and establish if there were any problems in providing eye care for people with dementia (living in their own homes and also those in residential care). There are a number of medical conditions that affect eyesight as we get older and if these are not detected or managed correctly it can lead to sight loss and affect quality of life.

    Patients were recruited to the study if they had a diagnosis of dementia and were aged between 60 and 89 years of age. Researchers from Humber NHS Foundation Trust helped to recruit people to the phase of the study that involved those living in residential care. This particular phase of the study was completed in Feb 2014. Thank you to all who helped our researchers.


    Individual Cognitive Stimulation Therapy (iCST)

    iCST is a home based individual Cognitive Stimulation Therapy (CST) package funded by the DoH Health and Technology Assessment (HTA), sponsored by University College London (UCL) and delivered by family carers.

    iCST is based on the evidence based group CST therapy for people with mild to moderate dementia, which has been found to be beneficial for cognition and quality of life. Prof Esme Moniz Cook (University of Hull) and Consultant Clinical Psychologist (Hon) was a co-investigator and principal investigator for Humber on this trial.

    This study is now complete.

    Click here to view the iCST study report on NIHR journals library page

    Click here to view information on the iCST manual
    (The manual is also available from your local East Riding library)

    Click here to view the article about iCST in Feb 2015 PRIDE newsletter


    Improving Well-Being and Health for People With Dementia (WHELD)

    WHELD is a National Institute for Health Research programme, focusing on improving well-being and health for people with dementia in care homes.The overarching goal of this trial was to determine whether this optimised WHELD intervention was more effective in improving the quality of life and mental health, than the usual care provided for people with dementia living in nursing homes. https://clinicaltrials.gov/ct2/show/NCT01855152
    Prof Esme Moniz-Cook (University of Hull) and Consultant Clinical Psychologist (Hon) was a co-investigator on this Programme.

    Click here to go to the WHELD website

    This programme is now complete and dissemination is ongoing.


    Support at Home - Interventions to Enhance Life in Dementia (SHIELD)

    SHIELD was a five year National Institute for Health Research programme on psychosocial interventions in dementia, that aimed to reduce disability, improve health outcomes, and enhance quality of life for people with dementia and their carers.  It is led by Martin Orrell at UCL/North East London Foundation Trust. Professor Esme Moniz-Cook (University of Hull) was a co-investigator and Consultant Clinical Psychologist (Hon) for this programme.

    Click here for the full report

    This programme is now complete.


    REMiniscence groups for people with dementia and their family CAREgivers (REMCARE)

    This study is now complete. The aim of this study was to explore the benefits of reminiscence groups for people experiencing memory problems, and those close to them.

    Humber NHS Foundation Trust was one of eight sites that took part in this research project led by Professor Bob Woods at the University of Bangor, with Professor Esme Moniz-Cook as co-investigator at the University of Hull and Principal Investigator for Humber on this study.

    Click here to download protocol, executive summary & full report