Dementia Research

Evidence-based research

Researchers at Stirling are involved in the here and now type of research that has the potential to bring about lasting and meaningful improvements to the lives of people with dementia and their carers in the very near future
Professor Emma Reynish
School of Applied Social Science, Stirling University

Research Team

The multi-disciplinary research team undertakes policy and practice relevant social scientific research, working collaboratively with other disciplines across the University, nationally and internationally.

It includes doctors, nurses, pharmacists, psychologists, economists, social workers, social scientists, musicians, carers and people with dementia.

Our research programmes deliver the here and now findings that have the potential to make real life differences today and tomorrow. As such our research has the potential for a more immediate impact compared to the likes of basic science and clinical trials research. Coupled with our ongoing development activities with DSDC we have the ability to deliver palpable impact to the older population and those living with dementia.

Our research covers many areas but broadly speaking looks at quality of life and ways to improve it, be that by understanding everyday care and support, dementia friendly neighbourhoods, practice in care homes or the acute hospital and the impact and delivery of design and assistive technology. For further information about specific research projects please see accompanying research schedule. For further information please contact Emma Reynish, Professor of Dementia Research emma.reynish@stir.ac.uk

Research Programmes

The dementia and ageing research group are currently conducting a number of research projects within the areas of:

Care and support

Acute hospitals

Home and homemaking

Quality of life

Other research

 

Care and support

Day Care Norway/Scotland

Dr Louise McCabe                                                                                         louise.mccabe@stir.ac.uk

Contributors: Louise McCabe, Jane Robertson, Anne Marie Rokstad, Solfrid Vatne

This paper presents findings from two research studies that engaged with people with dementia who attend specialist dementia day centres and their carers living across Scotland and Norway.  Day care is a central part of dementia policy in Norway and the provision of day care is specifically promoted within their national dementia plan.  In Scotland day care has not received the same attention within recent dementia policy. 

The research study in each country involved interviews with people with dementia currently attending day care and their family carers.  In Scotland, 19 people with dementia and 15 family carers attending six day care centres in both rural and urban areas of Scotland were interviewed.  In Norway, 17 people with dementia and 17 family carers were interviewed.  The data from the semi-structured interviews were coded thematically to draw out the benefits of day care attendance for both people with dementia and their family carers as well as identifying areas for potential development and improvement. 

The findings from the research suggest many positive outcomes experienced by people with dementia attending day care, especially in small rural communities, as well as identifying benefits for family carers.  Similarities in experience and outcomes were noted between Scotland and Norway.  In both countries it was recognised that there are potential improvements to the current day care model and the paper concludes by presenting what works well and what could be improved within dementia day care in Scotland and Norway to innovate this important avenue of support for those affected by dementia.

Assistive Technology – Bricolage

Dr Grant Gibson                                                                                   grant.gibson@stir.ac.uk

Title:  How do People with Dementia and Their Carers Make Assistive Technology Work for Them; innovation, personalisation and bricolage           

In the United Kingdom Assistive technologies (AT) are being ‘mainstreamed’ within dementia care services. However, little is known about how people with dementia use either these technologies, or the services that provide them in practice. Reporting the results of part of an NIHR study exploring provision of services to people with dementia in primary care, in this seminar Grant Gibson explores issues around the use of assistive technologies within dementia care.  In the bulk of the seminar Grant reports on a project examining the everyday use of AT among people with dementia and their carers. 

Qualitative, in-depth semi-structured interviews with 29 people with dementia and carers explored their experiences of using AT within their everyday lives and facilitators and barriers to their use.  From using sticky notes as signs or re-purposing of everyday or even novelty devices, to networking smartphones and tablets within bespoke telecare systems, AT were used in combination with everyday devices to provide care in often inpidual, personalised and novel ways. 

In practice this use can be characterised by ‘bricolage’; the non-conventional combination of devices in perse ways often differing from their original design. Factors influencing the bricolage based use of technology in dementia care included the ability and willingness of informal carers to act as bricoleurs, a lack of awareness of AT products or how to access AT through formal services among people with dementia, carers and GP’s and a lack of flexibility in AT systems.

While everyday use of AT among people with dementia can be characterised by bricolage, current design and delivery of products, alongside the organisation of technology services for dementia, limits the use of AT in person centred ways.  How people with dementia and carers engage in bricolage when using AT, and how services can mobilise these experiences in order to provide truly person centred technology enabled care services in dementia, therefore requires greater attention. 

Physical Activity in Care Homes

Alison Bowes                                                                                                       a.m.bowes@stir.ac.uk

The project is funded by the Healthcare Management Trust and aims to develop recommendations on how to increase physical activity in care homes, where residents tend to be sedentary. The first phase of the project involved a literature review and fieldwork in five care homes to ascertain current scientific background and the current situation for care homes, including the barriers and facilitators of physical activity. We used these findings to inform the development of workshops for care home staff at which we supported them to review current practice and to start developing a movement strategy for use in their care homes. We are currently working with care homes to finalise these action plans, and will shortly be observing their implementation and the impact of the plans for residents and staff. The talk will briefly review the findings of the work to date.

DSDC Best Practice in Dementia Care

Shirley Law                                                                                                          Shirley.law@stir.ac.uk

The Best Practice in Dementia Care Learning Programme is a six part self-study programme which requires participants, supported by a facilitator, to work through a set of six booklets. The booklets include exercises and questions which link to aspects of the participant’s role in Acute Hospital Care, Emergency/Critical Care, Care Home, Domiciliary Care or Housing Support. Each booklet is designed to help participants think about how they should respond to a person with dementia. Underpinning the programme is a person centred approach to care which focuses on the needs of the inpidual.

During the programme participants receive the support of a group facilitator who will arrange regular group meetings to discuss the topics covered in the booklets. Between the meetings participants are asked to think about answers to exercises which are designed to relate to their practice.

The role of the facilitator is to assist participants in making sense of what they read as well as helping them to meet their personal learning objectives. This involves encouraging them to reflect on their previous experiences and practices and, thereby, helping them to link new knowledge to real world experience. Knowledge of the participants work environments, past and present, will enable facilitators to link the course work into these personal experiences and actions. Where participants do not have direct practice examples to draw from facilitators are required to support them to reflect on their learning and utilise it to complete the exercises. Facilitators are asked to remember that inpidual learners may have deeply held views on the way they practice and that, consequently, changing their perceptions of situations will involve helping them to see things from a different perspective. The workbooks will begin this process and provide a basis on which to build change.

Volunteering in Dementia Care

Dr Vikki McCall                                                                                         vikki.mccall1@stir.ac.uk

Contributors: Dr Vikki McCall, Dr Louise McCabe, Dr Alasdair Rutherford, Dr Feifei Bu,
Dr Michael Wilson and Shirley Law

This project is exploring the role(s) of volunteers in supporting those facing dementia within different housing settings. It does so within the context of the reshaping of health and social care across the UK, which is increasingly shifting the locus of care from ‘institutional’ settings to within the space of the home. Our project will provide new knowledge and understanding of the role played by volunteers in the lives of people with dementia and produce practical guidelines and advice that will help people living with dementia, those who volunteer with people living with dementia and the housing services and care organisations that support them.

We have conducted an exploratory study using a mixed methods approach, including an extensive literature review, secondary analysis, organisational survey and qualitative interviews with volunteers, family carers and people living with dementia. Despite these pertinent issues however, there is surprisingly little known about the role(s) of volunteers in dementia care. This cross-disciplinary research builds on prior work by the Dementia Services Development Centre (DSDC) which sought to ascertain the needs of volunteers around supporting people with dementia.

The project explores what the perceived impact of volunteering in dementia care settings might be; who the volunteers are in dementia care settings and what the activities are that they engage in. Therefore this project will shed light on the nature and extent of volunteer involvement in the provision of support for those facing dementia, identifying key themes and research gaps. It will also identify the opportunities and challenges of doing so for both inpiduals and volunteer involving organisations. Finally, it will seek to identify implications with regard to volunteering within different housing settings more widely, and within the broader context of public service reform in Scotland and England.

Acute hospitals

The OPRAA cohort

Rebecca Walesby                                                                                        Emma.Reynish@stir.ac.uk

Title: The Older Persons Routine Acute Assessment (OPRAA) Cohort

The design is a prospective cohort study of all people aged 65 years and over with an acute medical emergency admission to the Medical Admissions Unit (MAU) in one district general hospital in the Fife region of Scotland over an 2 year  period.

Starting in 2009 and funded by the Scottish Government Joint Improvement Team, the NHS Fife Dementia Co-ordinating Group designed and implemented the Older Persons Routine Acute Assessment (OPRAA). OPRAA is based on the principles of “comprehensive geriatric assessment , with trained specialist nurses carrying out a structured assessment during the first 24 hours of admission, including an assessment of their functional ability at the time of admission and 3 months prior to admission, a cognitive assessment using the Abbreviated Mental test (AMT) ; the Confusion Assessment Method (CAM) for the presence of delirium ; an assessment of the presence of delirium based on clinical history, examination, and informant report; and documentation of the presence of a pre-admission diagnosis of dementia from self/informant report and/or hospital and primary care records.

All people aged 65 years and older admitted to the MAU were identified from Scottish Morbidity Records 01 (SMR01) data, which is a validated NHS Scotland routine dataset including age, sex, date of admission and discharge, type of admission, and whether the patient was admitted from a residential care or nursing home. The SMR01 dataset was then linked to the Community Health Index (CHI – the NHS Scotland patient register), the OPRAA dataset, SMR04 data on psychiatric admissions, CHI national mortality data and community dispensed prescribing data. Data linkage used the CHI number (the NHS Scotland unique patient identifier), and was carried out by the University of Dundee Health Informatics Centre (HIC). HIC Standard Operating Procedures have been reviewed and approved by the NHS East of Scotland Research Ethics Service and consent for research using this data was obtained from the NHS Fife Caldicott Guardian, based on researcher access only to anonymised data held in a secure safe haven that did not permit data export.

The OPRAA cohort is currently being used in a number of studies. Within the cohort the presence of a cognitive spectrum disorder is defined as one or more of known dementia diagnosed before admission, delirium and unspecified cognitive impairment. Dementia was defined as a reported dementia diagnosis in the OPRAA assessment, a prior community prescription of drug for dementia (anticholinesterase inhibitors or memantine), or a prior dementia diagnosis recorded in SMR01 or SMR04. Delirium was defined as both full syndromic delirium (a positive score on the CAM) or a clinical diagnosis of delirium made by the specialist nurses.

Cognitive Spectrum Disorders Mortality

Simona Hapca                                                                                                  s.z.hapca@dundee.ac.uk

Title: Mortality in older people with cognitive spectrum disorders on admission to the acute medical unit: analysis of two years follow up of the OPRAA cohort.

Contributors: Simona M Hapca (University of Dundee), Bruce Guthrie (University of Dundee), Jinnan Zang (Queen’s University Belfast), Vera Cvovo (NHS Fife), Emma Reynish (University of Stirling), and Peter T Donnan (University of Dundee)

Mortality appears to be higher in patients with cognitive impairment following an emergency hospital admission, but the long-term implications on survival of the different patterns of cognitive impairment are less well known. This study evaluates the risk of mortality in the OPRAA cohort

We defined ‘cognitive spectrum disorder’ as one or more of known dementia diagnosed before admission, delirium and unspecified cognitive impairment for those with Abbreviated Mental Test (AMT) score<8. A two-year follow-up of mortality for these patients was provided using linked national data.

A non-proportional hazards survival model with time varying coefficients was developed to appropriately estimate changes in mortality hazard ratios over time in people with different forms of cognitive spectrum disorders. Comparison of unadjusted hazard ratios estimates and estimates adjusted for model co-variates such as patient’s demographic characteristics and co-morbidities as well as ADL functions was performed.

In general, survival at 2 year follow up time was significantly lower in patients with any form of CSD as compared to patients with no CSD.  The non-proportional hazard survival model adjusted for the demographic characteristics and co-morbidities, showed that patients admitted with delirium are at a significant increased risk of death during the 90 days after admission (HR=1.47, 95%CI 1.27-1.70) and 1 year after admission until the end of 2 year follow up time (HR=1.45, 95%CI 1.18-1.78), whereas they are at a lower and non-significant  risk in the period 90 days to 1 year following admission (HR=1.20, 95%CI 0.99-1.45). In turn, patients with known dementia (either alone or superimposed on delirium) do not pose a significant risk of death in the first 90 days following admission (HR=1.04, 95%CI 0.84-1.29 and HR=1.20, 95%CI 0.97-1.44), but they become significantly at risk after the 90 days (HR=1.83, 95%CI 1.55-2.17 and HR=1.78, 95%CI 1.50-2.12 respectively).  For patients with unspecified cognitive disorder, the risk of death becomes significantly higher only after 1 year from admission (HR=1.65, 95%CI 1.19-2.29). Finally, the survival model adjusted for ADL functions, managed to explain only partially the increased risk of death in patients with CSD.

Risk of death is high in those with CSD. Immediate high risk is worst in those with delirium while those with known dementia or unspecified cognitive impairment tend to have more medium to long term risk.

Health Economics

Alasdair Rutherford                                                                             alasdair.rutherford@stir.ac.uk

Title: Estimating hospital service costs by cognitive spectrum disorder conditions in Scotland

As part of the OPRRA project, this study examines the relationship between hospital service costs and cognitive spectrum disorder (CSD) conditions.  We use the Scottish Morbidity Record (SMR) data, which is linked with data from the Patient-level Information and Costing Systems (PLICS), to obtain an estimate of the associated hospital cost. Preliminary results obtained from ordinary least squares (OLS) regression models show that hospital services costs vary greatly among patients with different CSD conditions. Patients with delirium or dementia are more likely to generate higher total hospital costs within the same period compared with patients without cognitive impairment. However, their average day costs are significantly lower. This being said, we acknowledge that the OLS estimates are likely to underestimate the differences because patients with delirium or dementia are subject to higher mortality rates thus less time to accumulate costs over time. To deal with this problem, we will use a joint modelling approach for further analysis.

Home and home-making

Neighbourhoods: our people, our places

Kainde Manji                                                            kainde.manji@stir.ac.uk, richard.ward1@stir.ac.uk

The aim of this research project is to find out how neighbourhoods and local communities can support people with dementia to remain socially and physically active. We work closely with people with dementia and their carers to find out what their neighbourhood means to them, the different ways it supports them, and what could be changed to make life better.

The research adopts three methods to enable us to do this: a neighbourhood walk, a home tour, and a social network mapping exercise. Our work across Central Scotland is just one branch of an international project with the same research being undertaken in Greater Manchester (England) and Linköping (Sweden). The Stirling site is led by Richard Ward and supported by Kainde Manji. This presentation will focus on our findings from the home tours, and the importance of home for people with dementia.

Project website: http://www.neighbourhoodsanddementia.org/work-programme-4/

Moving Memories

Richard Ward                                                                                                      richard.ward1@stir.ac.uk

The Moving Memories pilot study set out to explore the feasibility of an investigation into housing transitions for older people with a particular focus upon inpiduals making a move into care or supported living. The aims of the pilot were three-fold: we wanted to trial our chosen methods; sensitise ourselves to any related ethical considerations; and begin to understand the different aspects of people’s experience of moving and the related down-sizing process. The pilot study also provided an opportunity to build relationships with different stakeholders and potential collaborators for a planned larger project.

The study is informed by an emerging material culture literature and in particular existing research and discussion of the role that the belongings that people have amassed over their lives play in the process of transition. We wanted to understand whether closer attention to people’s relationship with their ‘material convoy’ of possessions might facilitate their move into a new home environment. The ultimate goal of the pilot study was to establish whether there are grounds for research in this area to enhance care practice and lead to a more positive experience of settlement in care, in recognition that this is often a period of heightened vulnerability for many people in late old age and where an unwanted or poorly planned move can often have negative outcomes.

Material Culture and Transitions in Care

Melanie Lovatt                                                                                     Melanie.lovatt1@stir.ac.uk

Residential homes for older people often encourage potential residents to bring personal possessions and furniture with them from their former homes, in order to help them ‘become at home’ and maintain a sense of identity. My doctoral research explored how interactions with material culture can shape residents’ experiences of home and transitions to care.

These findings are based on fieldwork collected over twelve months at two residential homes for older people. I conducted participant observation and interviews with residents and staff. A sense of home was not automatically transferred with the residents’ possessions. ‘Being at home’ was an active process which was influenced by the built design and care culture of the residential home, and by the residents’ ongoing interactions with the material culture which surrounded them. Residents furnished their rooms with possessions from their former homes, but also acquired new objects and made future plans for their rooms.

As well as encouraging residents to bring existing possessions with them from their former homes, residential homes should work with residents to explore other opportunities for place-making. These could include encouraging them to buy new items and supporting them in everyday practices which involve material interactions, such as tidying and taking part in activities. The built design and care culture of residential homes should enable, rather than hinder, place-making by residents.

Quality of life

Capabilities Approach to Quality of Life

Dr Elaine Douglas                                                                elaine.douglas@stir.ac.uk

Title: A Capabilities Approach to Quality of Life and Disability Costs in Older People

Contributors: Dr Elaine Douglas & Professor David Bell

Evidence suggests that older people are less willing to state that they cannot afford items or are under financial strain.  This suggests that methods to address standard of living that rely on standard measures of material deprivation, what people can do in relation to financial affordability, may be limited.  This is of particular importance to older people as they negotiate changes in both their financial and physical health resources as they age. 

We aim to extend current measures of standard of living to develop a quality of life model based on Sen’s Capabilities Approach, and to subsequently estimate older people’s disability costs in the UK.  The model incorporates what older people can do (freedom of choice), rather than what they actually do (functioning).  Using data from Understanding Society we produced a framework of capabilities based upon older people’s values: Social Integration (attachment); Security; Contribution (Role); Enjoyment; and Control (Autonomy/Restriction) as developed in the ICECAP-O and LSCAPE.  Using a latent factor structural equation model, we estimate the extra cost of disability for a representative sample of older people in the UK.  

The use of Sen’s capability approach, within a framework of older people’s values, offers a broader set of outcomes for policy.  For example, it may be that targeting older people’s capabilities may have a more practical application and may offer a more effective means to measure the benefits from policy intervention.  This approach shifts the focus of policy towards older people’s ability to attain a valued standard of living, rather than on whether they can achieve, or can afford, certain prescribed functions.

DSDC Family Carer Information and Training

Wendy Perry                                                                                                            wendy.perry@stir.ac.uk

DSDC has been working to help the families and informal carers of people living with dementia since 2011 across Scotland, Northern Ireland, the North East of England and Cumbria.  Through the facilitation of four hour workshops, in collaboration with local carers support organisations, carers are engaged with practical information and strategies for coping with the changes that can come in the dementia journey.  Each workshop focusses on issues around depression, delirium, changes in communication and behaviour, and it provides tips and strategies from the Ten Helpful Hints series of publications.  The topics were chosen through consultation with carers about issues that were of greatest concern to them.  Well over 1000 carers have attended, and the workshop format is now being used by one of DSDC’s partner organisations, Life Care, in Australia to meet the need for family carer education in their local communities.

Throughout the duration of the programme DSDC has sought to involve local support organisations to be present on the day of the workshop so that carers will have made local links for support by the end of the course.  Currently the project is focussing on strengthening the knowledge base among the support organisations that are involved and are funding a development course for eight people who are involved in the planning, carer recruitment and support from the local communities of North East England and Cumbria.  It is the goal of this phase of the project to train organisations to carry on with the workshop provision within their local communities.

Co-production Methodology to Explore Quality of Life

Corinne Greasley-Adams              agoodlife@stir.ac.uk  corinne.greasley-adams@stir.ac.uk

Contributors: Corinne Greasley-Adams, Jane Robertson, Grant Gibson, Vikki McCall, Toni Giugliano

 

The “A Good Life in Later Years” project, funded by the Life Changes Trust and undertaken in collaboration with Age Scotland, adopts a unique and innovative methodology to identify what older people feel is important to quality of life, and what is needed to achieve/maintain a good life in later years.

In this presentation we will introduce the methodology, which included 30 people over the age of 50 volunteering as researchers in five community research teams across Scotland. The project saw older people as equal partners in the research process with community research teams being central to capturing and analysing visual representations of a good life, running and analysis data from focus groups, and developing a questionnaire to be distributed to people across Scotland. With an emergent approach, analysis at each stage of the approach was undertaken jointly by University and community researchers, and informed the subsequent stages of the research. This inclusive approach proved enjoyable and educational for community researchers, and has seen older people having a substantial role in generating in-depth and rich data on quality of life in later years.

 

https://agoodlifeinlateryears.wordpress.com/about-us/

Health and Social Care Pathways

Feifei Bu                                                                                                                   feifei.bu@stir.ac.uk

Title: Home Care and Emergency Readmission of Older People? Evidence from the Linked Health and Social Care Data in Scotland

The aim of this study is to examine whether receiving home care will reduce the probability of emergency readmissions of older people, with a particular interest in the differences between people with and without dementia. Our data uses linked administrative health and social care records (2010-2011). It provides us a complete history of every patient's National Health Service (NHS) hospital admissions within a 12-month follow-up period, which can be linked with the information on social care usage collected by local authorities. Our analysis uses an extension of the Cox model, the conditional risk set model, which incorporates multiple events as a given patient could be readmitted more than once. We find no evidence that receiving home care reduces the risk of emergency readmissions for patients without dementia, or for patients who live with others. However, our results have shown that receiving home care is strongly associated with a reduced risk of emergency readmission for patients living with dementia and for older people living alone. This population-based study provides empirical evidence that home care can play an effective role in easing the pressure faced by the health system. It offers valuable implications for the health and social care integration process carried on in Scotland and other countries in Europe.


>Additional projects at University of Stirling

Healthy Ageing in Scotland (HAGIS)

HAGIS is a study of people aged 50+ in Scotland. It collects data on their health, economic and social circumstances. It uses this information to help scientists understand the circumstances of Scotland’s older people. This understanding will help improve the health and wellbeing of Scotland’s older people. HAGIS is the first longitudinal study of Scotland’s older people – a study which follows inpiduals and households through time. HAGIS will join the world family of longitudinal ageing studies which began in the USA with the Health and Retirement Study. Comparisons with other countries provides many opportunities to learn from their policies and practices. 

Currently, in its pilot phase, HAGIS will interview 1000 inpiduals aged 50 and over in Scotland and collect detailed information on their health, economic and social circumstances. This pilot will be used to test a number of innovative aspects of HAGIS and to inform a full scale version of the survey.  In particular, the HAGIS pilot will investigate the processes and systems required to link the survey data with other data that is routinely collected in Scotland in the fields of health, social care, education and benefits.

The HAGIS pilot will also be collecting detailed information on cognitive abilities, financial literacy and social networks. These are issues that differentiate HAGIS from the other ageing surveys and scientists in other countries are very interested in what can be learned from Scotland’s innovative approach to collecting information on these issues. Thus, as well as enhancing the understanding of ageing and improving outcomes for older people in Scotland, HAGIS aims to make Scotland a valued source in international comparisons of ageing research and to generate methodological advances that will benefit other ageing studies.

Find more about HAGIS at www.hagis.scot

Contact Details: alasdair.rutherford@stir.ac.uk

Understanding the outcomes of people with cognitive impairment (CI) and/or dementia admitted to the general hospital (GH)

The study sits in phase 0/1 of the Medical Research Council’s Framework for the Development and Evaluation of Complex Interventions. 

The key aim is to improve understanding of the outcomes of emergency hospital admission in people with cognitive impairment and/or dementia.

a)               Review of Outcomes: Review of current literature to obtain an understanding of the quality and type of evidence that exists about the prevalence of cognitive impairment in older people admitted to hospital as emergencies and associations with a spectrum of outcomes assessed or measured in this domain. A second narrative review will look at the evidence available about outcomes that are most meaningful to people with cognitive impairment following an acute hospital admission.

b)      Analysis of Outcomes: data-linkage of the OPRAA cohort then analysis of healthcare and economic outcomes following hospital admission of older people with and without cognitive impairment and dementia.

c)                  Survey: A survey to carers asking what the key relevant outcomes are for people with cognitive impairment and their carers in the acute hospital setting.

The findings will contribute to our understanding of the outcomes of patients with cognitive impairment in the general hospital and be of use for the development of interventions.

Contact Details: apusram@gmail.com, emma.reynish@stir.ac.uk

http://www.nets.nihr.ac.uk/projects/hsdr/135455

Associations between brain computed tomography (CT) abnormalities and delirium in the OPRAA cohort

Contributors: Vera Cvoro, NHS Fife; Peter Donnan and Bruce Guthrie, University of Dundee;  Alasdair MacLullich, University of Edinburgh; Emma Reynish, University of Stirling.

Delirium is a syndrome of severe deterioration in brain function characterised by acute onset, disturbed cognition, altered level of consciousness, and psychotic features. It occurs mainly in older people, and is often triggered by acute illness, injuries such as hip fracture, surgery, and drugs. Delirium is very common, affecting at least in 1 in 6 older hospital inpatients.

Delirium has enormous adverse human and financial impact. It causes severe patient and carer distress. It is associated with higher morbidity and mortality, longer hospital stay, at least a three-fold risk of new institutionalization, greatly increased risk of incident dementia, deterioration in global function score in dementia, and accelerated memory decline in dementia. Delirium is among the most frequent and significant complications affecting people with dementia in hospital.

Structural neuroimaging and delirium risk: Though neuroimaging is a very widely-used tool in brain research, there are surprisingly few studies of neuroimaging and delirium. Two main variable domains have been studied (a) brain atrophy, and (b) white matter abnormalities (WMAs).

The aims of the study are to investigate relationships between CT measures of brain atrophy and WMAs and delirium, and to CT findings as predictors of poor outcomes such as mortality, readmission and new institutionalisation in patients with delirium.

The primary hypotheses are that (a) brain atrophy, and (b) white matter abnormalities (WMAs) are associated with delirium. The secondary hypotheses are that in patients with delirium, greater degrees of (a) brain atrophy, and (b) WMAs, predict worse outcomes such as mortality, readmission and new institutionalisation. We will control for appropriate variables such as age, pre-admission dementia status and physical comorbidity and activities of daily living.

Methods

1)      Complete ordinal visual rating scales of brain atrophy and WMAs in 3300 CT scans from the Older Person’s Routine Acute Assessment (OPRAA) cohort

2)      Compare brain atrophy and WMAs in patients with and without delirium

3)      In the cohort with delirium assess whether brain atrophy and WMAs are associated with outcomes (mortality, institutionalisation, prolonged hospital stay and readmission)

4)      Assess whether there is an association between CT abnormalities and outcome in older patients irrespective of cognitive syndrome.

The study population: This cohort study will analyse data from the OPRAA cohort.

Data linkage: Data obtained from the scan analysis will be linked to the other patient data in the linked OPRAA data set.

This project will produce the largest study of neuroimaging and delirium to date. The main outputs of this study will be increased scientific knowledge of relationships between brain atrophy and WMAs and delirium. Moreover, the use of CT scans, which is the neuroimaging method used in routine clinical practice, means that the findings have the potential to contribute directly to prognostication, enabling risk stratification of outcome in patients with delirium and therefore placing the patient in the best possible care environment. Improving accuracy of outcome prediction model in delirium and improved ability to stratify will not only improve patient care, but also help doctors, patients and carers understand the recovery process and potential outcomes.

Defining a Standard Set of Patient-Centred Outcomes for Patients with Dementia: the ICHOM Dementia set

Contributors: Emma Reynish (University of Stirling)  Charlotte Roberts (ICHOM), Alasdair Burns (University of Manchester) Scottish Government

ICHOM convened an international, multi-disciplinary working group of patient representatives, psychiatrists, carer, social worker, specialist nurses, methodologists, psychologists, and registry experts to review existing data and practices. Using a modified Delphi method, the group developed a consensus Standard Set of outcomes that were felt to matter most to patients, along with case-mix variables for risk adjustment that we recommend collecting for all dementia patients.

The recommended Standard Set covers all types and stages of dementia. The outcomes include all-cause survival, cognition, neuropsychiatric behaviour, patient-reported domains of health-related quality of life and carer health-related quality of life. Baseline demographic, clinical, and condition information are included to improve interpretation of comparisons.

We defined a Standard Set of outcomes for people with dementia. The Set provides a universal rubric for outcome comparisons, with the ultimate goal of improving the value of care. Local implementation of this standard set of outcomes is currently underway in communities in Scotland and England.

Contact Details: emma.reynish@stir.ac.uk

http://www.ichom.org/medical-conditions/dementia/

RemoAge – Remote Support of Aged People

Contributors: Professor Alison Bowes, Dr Alison Dawson, Dr Louise McCabe

This multi-national, three-year project funded by the EU Northern Periphery and Arctic Programme 2014-2020, is exploring new ways of supporting vulnerable older people living in remote rural areas of northern Europe to live in their own homes and communities. Partner organisations from northern Sweden, northern Norway, and the Shetland Islands and Western Isles in Scotland are testing a range of different technology-enabled services which support older people, family carers and health and social care staff living and working in these sparsely populated areas. The University of Stirling are evaluators for the project, which began in Spring 2015. They have ongoing roles summarising and feeding back reports on progress and facilitating cross-national learning between partner organisations. The aim is to draw out general lessons on such issues as infrastructure requirements, challenges to service design, commissioning and implementation of services, and the acceptability of new services to users which will ultimately help organisations facing similar issues to understand better what works well and in what circumstances. For more information please contact one of the team:

Contact Details: a.m.bowes@stir.ac.uka.s.f.dawson@stir.ac.uk, louise.mccabe@stir.ac.uk

The ‘Carers Time Use’ project

Contributors: Professor Alison Bowes, Dr Alison Dawson, Dr Rosie Ashworth

‘Unpaid care for older people: a study of carers’ time’ is a project funded by the Economic and Social Research Council through the Centre for Population Change (‘CPC-II’), based at the University of Southampton. The overall aim of the project is to achieve improved understanding of the overall patterns of carer time use to support the development of improved foci of questioning in large-scale survey research and provide usable up-to-date data for exploring trends in caring for older people through the capture and analysis of detailed time use information. In the first stage of the project, qualitative interviews with 62 carers of older adults across Great Britain explored how care partnerships involving older people are operating in perse policy contexts, and what carers do, in particular taking account of policy pergence in the devolved UK context, and identifying the impacts of trends which have emerged in previous research. Together with feedback from a local panel of carers, this data has been used to design a time-use data collection tool in the form of an easy-to-use ‘time use diary’ available in paper, electronic and online versions specifically to collect information from carers about time that they spend caring supporting. The data collection process is now in progress. Findings from the project will be available at the end of 2017. For more information, please contact a member of the team.

Contact Details: a.m.bowes@stir.ac.uk  a.s.f.dawson@stir.ac.uk   Rosalie.ashworth@stir.ac.uk

Creating conversations: the impact of art-based activities on people with dementia

Contributors: Dr Jane Robertson and Dr Vikki McCall, University of Stirling; Kevin Harrison, Sarah Pearson and Fiona Taylor, Artlink Central

Creating Conversations: Gardening is a creative activity kit designed for activities coordinators, care staff and volunteers to deliver group activities for older people, including those with dementia. This project explored its potential to improve the wellbeing of those living with dementia.

The key element of each kit is a tablecloth depicting hand-rendered images around the garden theme, a facilitator’s handbook outlining ideas for activity sessions and a pack of discussion cards. The kit was designed and created by Artlink Central in response to their experience in participatory arts work, with the aim of supporting constructive conversations to engage personal histories and build social connections in day care and residential care settings. The current project was funded by a Scottish Funding Council Innovation Voucher to assess whether the pilot product delivered the intended benefits and identify improvements that could enhance its impact. A coproduction approach between the University of Stirling and Artlink Central informed joint reflection, action and change to refine the product and develop in-house evaluation processes. The project also engaged key partners in the public and third sectors with observation of the kit in practice in two distinct case study settings during April and May 2016.

The first case study took place in a day care setting, with 6 observation sessions with an average of 5 participants in each session. The second case study was conducted in a care home setting, with 4 observation sessions with 4 participants per session.

A total of 21 people with dementia, 9 staff and 7 volunteers took part in the observation sessions. Five staff who facilitated sessions and 2 team leaders took part in interviews. The analysis process involved identifying themes associated with the process of delivering the activities and the immediate outcomes of these activities as observed during the activity sessions. Some themes were specific to the kit (activity-related themes) and others related to the broader physical and social dynamics (wider themes) that framed the sessions and had an impact on the delivery and outcomes of the kit. The interview transcripts were analysed to identify the strengths and limitations of the kit in practice from the perspective of the facilitators and team leaders.

The project established that the creative opportunities provided by the kit had the potential to increase confidence, reduce anxiety, affirm identities, support positive social connections and provide opportunities to engage in enjoyable and purposeful activities as evidenced through the observations. Constraining factors and barriers to positive outcomes were observed, particularly the facilitation process and structure of activities, the physical/built environment, and the extent to which sensory and mobility impairments were accommodated. To enhance the product and its potential impact, recommendations were made to Artlink Central to refine the kit prior to its official launch at the British Society of Gerontology Conference at the University of Stirling with a concurrent exhibition “Creating Conversation: the development of a dementia friendly arts interaction” in July 2016. 

Further information

For further information about the project findings, please contact Dr Jane Robertson, University of Stirling, email j.m.robertson@stir.ac.uk or telephone +44 (0) 1786 466322.

For information about the kit Creating Conversations: Gardening, please contact Mr Kevin Harrison, Artlink Central, email info@artlinkcentral.org or telephone +44 (0) 1786 450971

Music and Dementia

Contributors: Corinne Greasley-Adams and Emma Reynish

There have been many anecdotal reports, case studies, and research studies suggesting the link between music and the benefits for people living with dementia.   This project aimed to develop a conceptual framework for understanding the complexities of music and dementia, which could be used to further theoretical understandings and guide future practice in this field. 

We undertook an online survey, of mainly open-ended questions. A total of 106 responses from musicians, academics, carers, music therapists, service providers and people interested in the topic informed an initial framework. A draft framework was subsequently shared with two working groups for comment and amended and refined accordingly. Our findings highlight how the impact of music is underpinned by a complex interplay of the environment, the musics, the deliverers and collaborators, and importantly the inpidual reactions to all of these components – emphasising the need for tailored and perse opportunities to embrace the magic of music.

Contact Details:  corinne.greasley-adams@stir.ac.uk             emma.reynish@stir.ac.uk

Research in Care Homes – Issues of participation and citizenship.

Contributors: Emma Law (DASR student)

This thesis explores the topic of research in care homes by examining links between inclusion, participation in general and participation in research and whether those who work and live in the care home environment experience social citizenship.

 

Using a national survey and interviews with residents, staff, relatives and experts in care home research, a focus group and a reflective field note journal, this thesis investigated whether participation generally was linked to participation in research for residents, staff and visitors in a care home setting. The thesis further explored if the model of social citizenship (Bartlett and O’Connor, 2010) functions in a care home environment and whether there is a link between participation and citizenship.

 

The findings suggest there is a lack of general participation which is connected with the leadership style and management within the care homes. There is misunderstanding about research and legislation amongst the care home staff, residents, visitors, as well as the junior research staff which inhibited staff and resident participation. Furthermore, citizenship is not experienced universally by residents or staff due to disempowerment, and exclusion occurs amongst residents due to age, frailty and dementia. By facilitating good leadership, communication and relationship-building such issues may be overcome.

 

In addition, the analysis suggests a link is evident between inclusion, participation and citizenship. Where choice is provided and residents have freedom from discrimination, have their social position maintained, as well as having a degree of responsibility for shaping events, this leads to participation and inclusivity as described in social citizenship. Furthermore, if inclusion is adapted for cognition and frailty, then participation leads to the experience of social citizenship, encouraging a culture which is able to welcome research.

 

The explicit emphasis on inclusion and participation in research has enabled this under-researched area of participation and experience of social citizenship in care homes to be more fully explored. Although there is little quality research going on in care homes this may be overcome. This requires understanding from researchers about the challenges of working in a care home environment. Similarly, an understanding from care home staff about the value of research is required. Ultimately, by encouraging research in care homes, residents and staff may experience social citizenship. Conversely by understanding and facilitating social citizenship within the care home, a research culture may be developed.

For further information, contact Emma Law - emma.law@stir.ac.uk or emma.law@nhs.net

A Social Network Analysis of Dementia Policies and Care Arrangements in Central America

Contributors: Nereide Alhena Curreri

The aim of this research is to examine and compare dementia service systems’ integration, policies and care arrangements in Central America.

It is estimated that 47 million people live with dementia worldwide as of 2015, and that this number will double every 20 years.  People with dementia are predominantly found in developing countries, about 2/3 of all cases.  Research has primarily focused on developed regions.  1/10 of empirical research is conducted on the 2/3 of persons with dementia.  Data from developing countries are practically non-existent.  Specifically, research on people with dementia in Central America is scarce.  Fragmentation in health/social care delivery affects people with complex needs. SNA can describe how a service system works yet has rarely been applied to systems in developing countries.

A social network analysis on the inter-organizational level of the dementia service delivery systems will be performed to explore integration and effectiveness.  Through semi-structured interviews, dementia policies and care arrangements will be mapped out.  The Alzheimer’s Disease Knowledge Scale survey (ADKS) will be administered to the National Association of Nurses in each country and the DemenzMonitor will be administered to a random sample of nursing homes.  Data will be compared across at least three Central American countries.

The current study will generate primary data on system networks, policies and care arrangements for people with dementia in Central America.  Knowledge gathered in this study will be used to inform and empower professionals, policy and related decision makers, public and non-profit service agencies, and service consumers to manage and improve dementia care services.  

Contact Details: n.a.curreri1@stir.ac.uk

A Critical Evaluation of a New and Innovative Model of Dementia Care

Contributors: Mr Chris Poyner (PhD Student)

This PhD project takes the form of an ethnographic study, and explores factors that aid the process of implementing a model of care into a newly built dementia specific care home.  The core aim of this study is to contribute to academic and practice knowledge about how to improve the experiences of people with dementia living in care homes.

Data collection took place between August 2015 and April 2016. An ethnographic approach was taken to fieldwork. Semi-structured interviews and/or unstructured observations were conducted with 20 formal care staff and 12 people with dementia at a newly built care home in England. 

The following factors appeared to aid implementation of this new model of care: Strong leadership ‘on the floor’, a recruitment strategy focused on low staff turnover, dementia-specific training, responsibility for implementing the model of care at senior management level and low agency staff presence. These are all factors that contribute towards providing the opportunities for an effective implementation process to emerge for new models of dementia care.

Contact Details:  christopher.poyner1@stir.ac.uk

The impact of organisational ties on the wellbeing of older people in care homes.

Contributors: Jennifer Ferguson (PhD student)

This study aims to explore the impact of organisational ties on the wellbeing of residents within care homes for older people. An understanding of wellbeing amongst older people in care homes is vital because those of the lowest socio-economic status (SES) also suffer the greatest health and wellbeing disadvantages in later life.

Organisational ties are the connections an actor can draw upon to gain social capital, resources, material goods and information from an organisation (Small, 2006). These ties have been shown to be very important in gaining resources for those of lower SES (Small, 2009), whereas those of a higher SES are more likely to gain their resources from their personal social networks. Therefore, analysing the relationship between organisational ties and SES of older people is important because this relationship could affect the wellbeing of the care home population.

In this study, Institutional Ethnography will gather key data on social and organisation ties from residents, family and staff. This data will be analysed through ego networks, which are networks with focal actors (Borgatti et al. 2013), to establish the influence of organisational ties. Thus, this research will add to the understanding of organisational ties and how these ties may impact an older person’s wellbeing when residing in a care home. Moreover, it will explore how people of differing socio-economic statuses access, and use, care home resources compared to the resources in their personal networks.

Contact Details:  Jennifer.ferguson1@stir.ac.uk

Carers Time Use: implications of personalisation and Self-Directed Support

Contributors: Nadine Thomas (PhD student)

Previous research suggests that decisions in care partnerships regarding pision of labour between paid and unpaid care may be influenced by financial issues. The personalisation agenda is posed to alter the financial circumstances of carers; for example through direct payments (England) or Self-directed Support (Scotland). In light of somewhat uncertain information concerning whether personalisation will or will not prove significant for unpaid carers, my PhD qualitatively assesses the impact that the trend towards personalisation may have on time use in unpaid care. It adopts a case study approach, analysing the perspectives and experiences of 15-20 care partnerships negotiating Self-Directed Support over time, and links this with other findings from the CPC Carers Time Use survey data. Its distinctive contribution is likely to highlighting key implications of personalisation for sustaining unpaid care. 

Contact Details: nadine.thomas@stir.ac.uk

Designing Care Homes for Dementia: Spatial Arrangements for People with Cognitive Impairments

Contributors: Martin Quirke (Architect, DSDC and PhD student)

People with dementia form a clear majority of those living in residential care but, despite long established dementia design principles, the quality of design for cognitive impairment in care environments remains very poor.  Several dementia design audit instruments exist, but these tend to focus on post-occupancy design assessment of completed environments.

This study set out to develop formal means of examining design proposals at early stages of the design process. Exploration of a means to assess the earliest influential design decisions, led to the development of two primary techniques based the spatial configurations described floor plan drawings. 1. A questionnaire styled audit tool derived from detailed analysis of internationally respected dementia design audit tools: the Environmental Assessment Tool, the Dementia Design Assessment tool (a.k.a. Stirling Tool), and the Therapeutic Environmental Screening Survey; and from this 2. The development of a new graph based spatial analysis technique, derived as a hybrid of a range of existing techniques from the field of Space Syntax.

The development and application of these techniques is currently being tested using floor plans from a range of both published residential care settings (n.30) and collected floor plans sampled from around New South Wales (n.40), with the aim of identifying floor plan layouts likely to provide the most dementia accessible care environments.

Contact Details: Martin.Quirke@stir.ac.uk