Summary of funded Dementia Research Projects Health Services and Delivery Research (HS&DR) Programme: HS&DR 11/2000/05 The detection and management of pain in patients with dementia in acute care settings: development of a decision tool It is difficult for staff working in hospitals to accurately find out the cause of distress in people with dementia. This study proposes developing tools to support staff working in hospital settings, to help them recognise when a person with dementia is in pain, and give them guidance on how to treat that effectively. It will do this through liaising with carers to explore how they can be more involved in identifying, helping to manage and recording pain. HS&DR 11/2000/11 Improving care for people with dementia: development and initial feasibility study for evaluation of Life Story work in dementia care. People with dementia sometimes need help to communicate their histories and identities. This study will investigate how 'Life Story work' can help people living with dementia to do this, and whether this work can enable services to more effectively meet their needs. It will do this by speaking to people with dementia, their carers, and health care professionals about their experiences of Life Story work, and identifying areas of good practice. HS&DR 11/2000/13 The prevalence of visual impairment in people with dementia. The risks of dementia and vision problems both increase with age. However, it is not known how often vision problems in dementia patients go undetected, or are managed inappropriately. This study will establish the prevalence of visual impairment by examining people with dementia and go on to interview eye care professionals, family carers, professional carers and people with dementia about their experiences of eye care, in order to improve eye testing and vision care for people with dementia. HS&DR 11/1017/04 Service provision for older people who are homeless and have memory problems. Little is known about the problems faced by homeless older people with memory problems. This research will investigate how their memory problems are recognized and responded to, what services and support they receive, and the extent to which Page 1 of 6
their needs are met. Interviews will be carried out with older homeless people who have memory problems, as well as those without them, and the staff providing them with support. The study intends to use these findings to produce good practice guidelines for health and homelessness practitioners. HS&DR 11/1017/18 A multi-site evaluation of the Person, Interactions & Environment (PIE) tool to improve person-centred care for people with dementia admitted to acute hospital wards. Person-centred care has been identified as an essential component of high quality care, yet has proven challenging for ward teams to define or implement in practice. In this study researchers will implement and evaluate their developed qualitative observational tool called PIE, which looks at the Person receiving care, their Interactions with staff and the immediate Environment and a linked programme for change, to improve person-centred care for people with dementia in general hospital wards. HS&DR 11/1017/07 Comorbidity and dementia: improving healthcare for people with dementia (CoDem). Many people with dementia have additional medical conditions, such as stroke, diabetes or visual impairment. If not managed well, these conditions can make a person s dementia worse or lead to unplanned hospital admissions. This study considers how having dementia alongside another long-term health problem affects how people access services, how their needs are assessed and how they are supported over time. Health Technology Assessment (HTA) Programme: HTA 10/50/02 Assistive Technology and Telecare to maintain Independent Living At home for people with dementia: The ATTILA Trial. Assistive Technology and Telecare, when individually tailored to a patient's needs and integral to their care plan, can make the home of a person with dementia safer by reducing the specific risks associated with memory and orientation difficulties. This study will examine the effect these technologies have on vulnerable dementia patients in their own homes, and will compare to those who are randomised to receive the standard care. HTA 11/15/04 Goal-oriented cognitive rehabilitation in early-stage Alzheimer's disease: multi-centre single-blind randomised controlled trial (GREAT). Early intervention offers the possibility of helping people with early-stage dementia (PwD) and their carers to manage the impact of the disease on their everyday life and reduce or delay the progression of disability. Leading up to this study, the team completed a pilot trial of Cognitive Rehabilitation (CR). The findings suggested that CR can be helpful for PwD and their carers. Following on from the pilot, the team will conduct a large-scale trial to provide definitive evidence about the possible benefits and cost-effectiveness of CR to guide practice within the NHS. The team will examine whether CR improves everyday functioning for PwD, and investigate whether CR leads to improvements in quality of life, self-efficacy (perceived ability to Page 2 of 6
influence one s situation), mood, memory and thinking skills, over those in the usual treatment group. Benefits for carers will also be examined. HTA 11/15/13 Evaluating the effectiveness and cost effectiveness of Dementia Care Mapping (DCM) to enable person-centred Care for people with dementia and their carers: A UK cluster randomised controlled trial in care homes (DCM EPIC trial). At least two-thirds of people living in care homes have dementia and many become agitated or show other behaviours staff find challenging. These behaviours are often linked to poor quality care and people with these behaviours are more likely to be admitted to hospital and are often prescribed antipsychotic drugs, which can cause harmful side effects. This study will involve 750 people with dementia and care staff in 50 care homes. 30 care homes will be randomly allocated to have staff trained to use Dementia Care Mapping; a practice development tool and process. The success of Dementia Care Mapping will be measured according to changes in behaviours staff find challenging, resident quality of life, the drugs residents are prescribed, the number of NHS services needed for residents, changes in the numbers and types of negative events residents experience (for example admission to hospital, falls), how staff feel about their job and staff resignations and sickness. Efficacy and Mechanism Evaluation (EME) Programme: EME 11/47/03 Reducing pathology in Alzheimer s disease through Angiotensin TaRgeting - The RADAR Trial. Alzheimer s disease (AD) profoundly affects memory and brain function in older individuals. It is a slow progressive disease, which can last for a number of years. With an ageing population, AD health care provision needs will significantly rise. Existing treatments only temporarily treat specific imbalances in the brain but as yet, there is no cure for AD. The team will undertake a multi-centre clinical trial in the UK, co-ordinated by Bristol, and in collaboration with University College London (UCL)) to see if losartan, a well-tolerated blood pressure drug, can complement current treatments for AD. The team believe losartan can slow down the progression of AD by improving blood flow in the brain and altering chemical pathways that cause brain cell damage, brain shrinkage and memory problems in AD. EME 11/47/01 Minocycline in Alzheimer's disease Efficacy Trial: The MADE Trial. Although drugs exist that can improve some of the symptoms, there are no treatments that slow down or stop the progression of dementia. This study will trial the use of Minocycline, an antibiotic that has shown the potential to protect brain cells in a number of experimental models of Alzheimer's and other neurological diseases. 500 patients who are at the earliest stages of Alzheimer s disease will be treated for 2 years with minocycline to see if this slows down decline in cognition and functional ability. Page 3 of 6
Research for Patient Benefit (RfPB) Programme: PB-PG-0211-24044 Investigation of screening tools for amnestic mild cognitive impairment (a-mci). The study will investigate two screening instruments for identifying people with cognitive decline, particularly in memory, greater than that expected for an individual s age and education level but that does not interfere notably with activities of daily life. As this group are more likely to develop dementia, in particular Alzheimer s disease, a more efficient method to detect such people will enable future large scale, intervention studies directed at preventing or slowing decline into dementia. PB-PG-0211-24078 Strategies for managing Behavioural and Psychological Symptoms in Dementia (BPSD) for community dwelling older people: evidence into practice. The study is an integrated review of the evidence for non drug-based interventions for managing behavioural and psychological symptoms in dementia for people living at home. These symptoms, such as aggression, wandering, agitation, emotional problems and other behaviours can put the person with dementia at risk, affect their quality of life and/or be stressful for those providing care and support. Evidence is required to help practitioners and carers support people with dementia and so that they can continue to live at home. The review will enable exploration of how effective different interventions are at different stages of dementia, the relative costs and will identify examples of good practice and areas for future research. It will bring together the best evidence and will involve people with dementia, their families and care workers, practitioners and service providers in the review process to ensure that recommendations reflect their priorities and experiences. PB-PG-0211-24079 Using Conversation Analysis in the differential diagnosis of memory problems: a pilot study. This study will test the potential for conversation analysis to identify features in patients' talk, which could help clinicians to distinguish between patients presenting to a memory clinic with a form of dementia and those presenting with benign forgetfulness, which will not develop into dementia (at present this difficult distinction is the most important reason why patients come to a memory clinic). PB-PG-0211-24140 Prevention of falls in cognitively impaired older adults living in residential care (PROF-COG). Falls are twice as common in those with dementia and to date, despite evidence to support preventative interventions in the cognitively intact, there have been no effective interventions specifically for those with dementia. An intervention has been designed to address falls risk factors for those with cognitive impairment living in care homes and this will be tested in a pilot cluster randomised controlled trial. Interventions include a review by a geriatrician; balance training exercise; and management of dementia related behaviours. Page 4 of 6
PB-PG-0211-24123 Hydroxymethylglutaryl-CoA reductase inhibition with simvastatin in mechanically ventilated patients at high risk of delirium. Delirium, acute confusion, is common in critically ill patients. It results in a longer hospital stay, a higher risk of death and, following delirium, patients frequently go on to experience new or worsening dementia. This study is a randomised placebo controlled trial to test if simvastatin (usually used to reduce cholesterol but known to have significant anti-inflammatory properties), prevents or reduces delirium in critically ill patients and help decide whether a much larger and more expensive trial should be undertaken into the potential beneficial effect of simvastatin on brain function. PB-PG-1111-26063 Shared decision making in mild to moderate dementia. Involvement of dementia patients in treatment decisions can become a complex process when the patient s judgment, understanding and memory are affected. Nonetheless, patients with dementia want to be involved in decisions about their care. In general, family carers are also involved in treatment discussions and decisions to support the patient. Respecting and balancing the preferences and views of both patients and carers is key. This project will identify evidence to inform best practice in how to communicate with patients with mild to moderate dementia and carers to optimise their involvement in shared decision making. Programme Grants for Applied Research (PGfAR): DTC-RP-PG-0311-12001 Improving the diagnosis and management of dementias of Lewy body type in the NHS (DIAMAND-Lewy). Lewy body dementia causes 15-20% of all dementia cases but only one in three cases are currently detected. This study aims to bring together accurate recognition and treatment by (1) prompt diagnosis through simple clinical tools for assessing specific symptoms (cognitive fluctuation, visual hallucinations, parkinsonism); (2) producing and testing in a pilot randomised study, evidence based management toolkit for clinicians to improve patient management. DTC-RP-PG-0311-12003 Effective home support in dementia care: Components, impact and costs of tertiary prevention. This programme intends to improve understanding of home support provided to people with dementia and their carers through nine studies divided into three workstreams. Although dementia care poses a significant health and care challenge for the public, there is limited evidence of the current pattern of home support, its costs and effects at different stages of the condition. The programme addresses this evidence gap. For patients it offers the possibility of more effective forms of care, tailored to the stage and severity of the illness and their own preferences. Gains for providers are likely in the short to medium term and potentially include a reduction in unplanned hospital admissions and reduced prescribing costs. Page 5 of 6
DTC-RP-PG-0311-12004 Peri-operative Enhanced Recovery hip Fracture Care of patients with Dementia-"PERFECTED" project. One quarter of acute NHS hospital beds are occupied by people with dementia. Inconsistent standards of care, poor physical and mental health management and overuse of sedatives have been highlighted in national reports, such as Counting the Cost (2009). These provide recommendations for improving care, for example people who break their hip have a high risk of confusion/delirium, which is linked to them not getting better and causes distress for individuals and their families, and delays the process of recovery. There is good quality evidence that preventing confusion is possible, however, there is not enough known about how to prevent this happening in people with dementia by making improvements in hospital care. This will be the first dementia-specific study combining the most feasible and effective elements of best care with a formal implementation system. DTC-RP-PG-0611-20005 Supporting Excellence in End of life care in Dementia via an integrated care pathway (SEED programme) Northumbria Healthcare NHS Foundation Trust. This research aims to support professionals, both commissioners and providers, to deliver good quality, community-based end of life care in dementia. Key outputs include: i) A prototype integrated care pathway (ICP) for end of life care in dementia ii) Educational resources to support the use of i) and iii) Commissioning guidance for clinical commissioners. Our ageing population will mean more people with long term, and age-related, illnesses like dementia. This will lead to an increased need for end of life care for those with complex needs living in the community. People with dementia already receive poorer end of life care compared to those with cancer, with more hospital admissions and worse pain control. Page 6 of 6