Dementia Friendly Communities across England were asked to complete an online survey. The survey asked about the level and type of physical activity provision for people living with dementia and their family supporters in the community. Dementia Friendly Communities differ in their experience of offering physical activity, therefore three different case study sites across England were selected for further data collection. Interviews and focus groups were conducted with activity providers to further understand the facilitators and barriers to physical activity provision. Interviews and focus groups were also conducted with people living with dementia and their family supporters/carers to understand the lived experience of participating in physical activity.The project used a mixed method approach to investigate the provision of physical activity (PA) for people with dementia in Dementia Friendly Communities (DFCs) in England. A national evaluation, the DEMCOM study, of DFCs identified different approaches to the provision of PA for people with dementia within DFCs. However, providers and users of PA were not included in the sample. The current project expands on the findings of the DEMCOM study surveying 30 DFCs across England to investigate the perceived opportunities and challenges of PA provision for people with dementia. Three DFCs with differing experiences of promoting PA were used as case studies to further examine the accessibility and equitability of PA. Interviews were undertaken with activity providers and people with dementia within these study sites to further understand the lived experience of participating in PA. An online survey was used to collect data about the level and type of provision of physical activities for people living with dementia and their family supporters in Dementia Friendly Communities in England. The leads of Dementia Friendly Communities in England were opportunistically sampled. Semi-structured interviews and focus groups were conducted with key stakeholders from three Dementia Friendly Communities in England. Participants included providers of dementia-friendly and dementia specific physical activities, funders of activities, and people living with dementia and their family supporters.

A set of data on aspects of dementia published on the myhealthlondon website.

DEM0001 - Numbers of people with a diagnosis
DEM0002 - Diagnosis rates
DEM0003 - Care reviews for GP patients
DEM0004 - Dementia today
DEM0005 - Spend on anti-dementia drugs
DEM0006 - Waiting to be tested by Memory Clinics
DEM0007 - Waiting for results at Memory Clinics
DEM0008 - Looking for dementia in hospital
DEM0009 - Assessing dementia in hospital
DEM0010 - Referring people for further tests
DEM0011 - Help to remain at home
DEM0012 - Dying with dementia in hospital
DEM0013 - Involving people in research
DEM0014 - Length of stay in hospital
DEM0015 - Making sure people are treated well in hospital
DEM0016 - Caring for people in hospital
DEM0017 - Meeting mental health needs of people in hospital
DEM0018 - Helping people when they leave hospital
DEM0019 - Understanding people's needs in hospital
DEM0020 - Recognising dementia in hospital
DEM0021 - Training staff on dementia in hospital
DEM0022 - Resources for supporting people in hospital
DEM0023 - Specialist dementia care for people in hospital
DEM0024 - Delays in leaving hospital
DEM0025 - Going back into hospital

Data are provided in a standardised schema with each record containing an indicator ID and organisation ID. These can be matched against the Indicator Lookup, Organisation Lookup and Period Lookup tables included in the file, which also includes further metadata.

The record contains 5 bundles of data described below: 1. Longitudinal cohort study: A longitudinal cohort study from 97 care homes around England, about 1483 residents living with dementia. 2. Follow-up qualitative study: A follow-up qualitative study as part of the randomised controlled trial of the acceptability of the MARQUE care home staff intervention to manage agitation and improve quality of life. 3. Qualitative interviews with family carers: Qualitative interviews with family carers of people with dementia who were currently in hospital or living in a care home. 4. Ethnographic observational data: Observational data of people with severe dementia who are either living in care homes or admitted to an acute medical ward. 5. Feasibility trial: Data from a feasibility trial of an intervention to improve the management of agitation in care home residents living with severe dementia.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.

Background: Agitation is a common, challenging symptom affecting large numbers of people with dementia and impacting on quality of life (QoL). There is an urgent need for evidence-based, cost-effective psychosocial interventions to improve these outcomes, particularly in the absence of safe, effective pharmacological therapies. This study aimed evaluate the efficacy of a person-centered care and psychosocial intervention (WHELD) on QoL, agitation and antipsychotic use in people with dementia living in nursing homes, and to determine its cost. Methods and Findings: This was a randomized controlled cluster trial conducted between 1st January 2013 and 30th September 2015 which compared the WHELD intervention with treatment as usual in people with dementia living in 69 UK nursing homes, using an intention to treat analysis. All nursing homes allocated to the intervention received staff training in person-centered care (PCC), social interaction (SoI) and education regarding antipsychotic medications (AM) followed by ongoing delivery through a care staff champion model. Primary outcome measure was QoL (DEMQOL-proxy). Secondary outcomes were agitation (Cohen Mansfield Agitation Inventory), neuropsychiatric symptoms (NPI), antipsychotic use, global deterioration (CDR), mood (Cornell Scale for Depression in Dementia CSSD), unmet needs (Camberwell Assessment of Need in the Elderly CANE), mortality, quality of interactions (Quality of Interactions Scale –QUIS), pain (Abbey) and cost. Costs were calculated using cost function figures compared with usual costs. 847 people were randomized to WHELD or treatment as usual, of whom 553 completed the nine-month RCT. The intervention conferred a statistically significant improvement in QoL (DEMQOL proxy z score 2.82, p=0.0042, Mean Difference 2.54 SEM 0.88, 95% Confidence Intervals (CI) 0.81, 4.28, Cohen’s D Effect Size 0.24). There were also statistically significant benefits in agitation (CMAI Z score 2.68 p=0.0076, Mean Difference 4.27 SEM 1.59, 95% CI -7.39, -1.15, Cohen’s D 0.23) and overall neuropsychiatric symptoms (Z score 3.52 Mean Difference 4.55 SEM 1.28 p=0.00045, 95% CI -7.07,-2.02, Effect Size 0.30). Benefits were greatest in people with moderate-moderately severe dementia. There was a statistically significant benefit in positive care interactions as measured by QUIS (19.7% increase, SEM 8.94, 95% CI 2.12, 37.16, Cohen’s D 0.55, P=0.03). There were no statistically significant differences between WHELD and treatment as usual for the other outcomes. A sensitivity analysis using a pre-specified imputation model confirmed statistically significant benefits in DEMQOL proxy, CMAI and NPI with the WHELD intervention. Antipsychotic drug prescribing was at a low stable level in both treatment groups and the intervention did not reduce use. The WHELD intervention reduced cost compared to treatment as usual, and the benefits achieved were therefore associated with a cost saving. The main limitation was that antipsychotic review was based on augmenting processes within care homes to trigger medical review and did not in this study involve proactive primary care education. An additional limitation was the inherent challenge of assessing QoL in this patient group. Conclusions: These findings suggest that the WHELD intervention confers benefits to QoL, agitation and neuropsychiatric symptoms, albeit with relatively small effect sizes, as well as cost saving in a model that can readily be implemented into nursing homes. Future work should consider how to facilitate sustainability of the intervention in these settings. Trial registration: ISRCTN Registry ISRCTN62237498

The Brain Health Data Pilot (BHDP) project aims to be a shared database (like a library) of information for scientists studying brain health, especially for diseases like dementia, which affects about 900,000 people in the UK. Its main feature is a huge collection of brain images linked to routinely collected health records, both from NHS Scotland, which will help scientists learn more about dementia and other brain diseases. What is special about this database is that it will get better over time – as scientists use it and add their discoveries, it becomes more valuable.

This is a subset of the Mental Health Inpatient and Day Case - Scottish Morbidity Record (SMR04) dataset for use in the Brain Health Data Pilot (BHDP) project.

The dataset contains a wide variety of information such as patient characteristics, mental health diagnosis, length of stay, destination on discharge, whether they are admitted under Mental Health Legislation and any previous psychiatric care. Patient identifiers such as name, date of birth, Community Health Index number, NHS number, and postcode are included together with a wide variety of geographical measures. This includes the Scottish Index of Multiple Deprivation and Carstairs measures, census output area, NHS Board, Electoral Ward and Parliamentary constituency.