Dementia research

The Centre for Applied Dementia Studies is one of the UK’s leading centres for psychosocial research into living well with, and caring well for, people with dementia and their families.

We have over 20 years experience of high quality pioneering research underpinned by the values of person-centred care.

Our research aims to make a difference to the lives of people with dementia by influencing policy and practice. We have a major impact through, for example:

  • Our model of Person-Centred Care (PCC), proposed by Professor Tom Kitwood in the 1990s and still developing and evolving. The model is widely accepted nationally and internationally, and embedded in policy such as National Institute of Clinical Excellence Guidelines 
  • Our observational measure and practice development methodology, Dementia Care Mapping (DCM). Since 2008, 3616 practitioners have been trained in DCM in the UK and a further 3189 internationally. DCM is endorsed by the National Audit Office, and regulators use our DCM derivative, the Short Observational Framework for Inspection (SOFI) to audit care

 

  • Our co-editing of the landmark text book, Excellence in Dementia Care, now in its second edition

Our areas of research focus include Living Well with Dementia and Improving the Quality of Care for People with Dementia.

Living Well with Dementia reflects research interest in the experience, for the person and their family, of living with dementia from diagnosis through to end-of-life, including experience of rarer, and young onset dementias.

Our research has received funding from a range of organisations including the ERSC, MRC, NIHR, Alzheimer Society and Department of Health.

We have a growing number of doctoral students across the Faculty exploring aspects of Dementia including those sponsored by BUPA and the Alzheimer Society. The Centre for Applied Dementia Studies convenes a monthly applied inter-disciplinary dementia meeting with visiting speakers from partners internationally, nationally and regionally.

 

How dementia affects information processing

Professor in Dementia Studies and Head of the School of Dementia Studies at the University of Bradford, Murna Downs, explains how Dementia affects information processing and the ways research is making a real world impact in care settings.

BHiRCH

Better Health in Residents in Care Homes

This study aims to develop and test a complex intervention to reduce rates of avoidable hospital admissions from nursing homes.

It is funded by a National Institute for Health Research programme grant. The study started on June 1 2015 and will last 3 years and 3 months. Information will be gathered in London and in West Yorkshire.

Find out more about HBiRCH >>

GREAT: Living Well with Memory Difficulties

Goal-oriented Cognitive Rehabilitation in Early-stage Alzheimer’s and Related Dementias: Multi-centre Single-blind Randomised Controlled Trial

The GREAT trial (short title: Living Well with Memory Difficulties) is a large multi-centre trial led by Professor Linda Clare. The trial is co-ordinated from the University of Exeter and is taking place in eight areas in England and Wales. Professor Jan Oyebode from the School of Dementia Studies, University of Bradford, co-ordinates the Birmingham centre.

The trial will provide definitive evidence about whether goal-oriented cognitive rehabilitation is a clinically-effective and cost-effective intervention for people with early-stage dementia and their family, friends and/or carers.

The study is funded by the Health Technology Assessment Programme of the National Institute for Health Research (HTA reference 11/15/04). We expect the results to be available in 2017.

Why is the GREAT trial important?

There are over 750,000 people with dementia, and this figure is expected to double by 2040. People with dementia experience memory difficulties that can affect activities, relationships and enjoyment of life. As we cannot currently cure or remove memory difficulties, it is important to find out how people with memory difficulties as well as their friends, family and/or carers can live as well as possible despite these difficulties.

Early intervention offers the possibility of helping people with early-stage dementia and their carers to manage the impact of the disease on their everyday life and reduce or delay the progression of disability. Providing definitive evidence that cognitive rehabilitation helps people with dementia and their carers to live well with memory difficulties would mean that this intervention can be implemented as part of routine healthcare.

The results of the study will guide practice within the NHS and will be used to help develop the services provided by memory clinics. Towards the end of the trial we will offer training to memory clinic teams so that they can provide this kind of support. We will also develop a self-management guide for people attending memory clinics that they can use at home. We expect the results to be available in 2017.

What is goal-oriented cognitive rehabilitation (CR)?

Goal-oriented CR involves working with a therapist (an experienced health professional) to try to manage the impact that memory difficulties can have on everyday life, such as activities, relationships, and enjoyment of life. The aim of CR is to reduce functional disability by drawing on retained strengths and supporting adaptive behaviour. Achievable and personally-meaningful goals relating to everyday activities are identified. These are areas where the person with dementia wishes to see improvements. A therapist works with the person and the carer to help achieve these goals. Initial evidence from a pilot study suggested that this new treatment was helpful for people who had attended a memory clinic and also for their family members.

How will we find out whether cognitive rehabilitation is helpful?

We are asking everyone who takes part in the GREAT study to complete some questionnaires and memory tasks on several occasions; half of the people receive cognitive rehabilitation while the other half continue with their usual treatment. We will then compare the responses on the questionnaires and memory tasks between these two groups of participants to find out how helpful the visits from the therapist delivering cognitive rehabilitation were to participants and their friends and family members. To answer our research questions, we need 480 people with memory difficulties to take part in the study.

The GREAT Team

The GREAT study takes place in eight research centres across England and Wales. Each centre has a lead investigator (an experienced academic clinicians overseeing the day to day work of the research centre), a part-time research assistant, and a part-time therapist (for example, an occupational therapist or clinical psychologist). For the centre run by University of Bradford, the lead investigator is Professor Jan Oyebode, the research assistant is Ms Helen Cunnae and the therapist is Ms Jayne Hughes.

Find out more

Visit the main study website.

RHAPSODY

Research to Assess Policies and Strategies for Dementia in the Young

The main goal of RHAPSODY is to improve care for people with Young Onset Dementia by supporting their carers. The project aims to create and evaluate an educational, web-based, interactive e-learning programme which is tailored to the needs of this particular group of people.

The project is an EU Joint Programme Neurodegenerative Disease Research (JPND) project which includes eight partner institutions from six countries– France, Germany, the Netherlands, Portugal, Sweden and the United Kingdom. The UK contribution is being funded by the ESRC. JPND is the largest global research initiative aimed at tackling the challenge of neurodegenerative diseases. JPND aims to increase coordinated investment between participating countries in research aimed at finding causes, developing cures, and identifying appropriate ways to care for those with neurodegenerative diseases.

The overall lead for RHAPSODY is Professor Alexander Kurz from the Technological University of Munich and the UK lead is Professor Heather Gage from the University of Surrey. Professor Jan Oyebode from the School of Dementia Studies, University of Bradford, contributes clinical and qualitative research expertise to the UK group.

Aims

RHAPSODY has four major aims.

  • To evaluate the policy and information environment that provides the framework for the treatment and care of people with YOD and their carers in six European countries.
  • To assess the specific and individual needs of this particular group.
  • To use this information to design an internet-based, multimedia, interactive learning course for carers of people with YOD.
  • To test this learning course in a pilot study at three sites in France, Germany and the United Kingdom, assessing feasibility, acceptance and user satisfaction.
Impact

The results of RHAPSODY will provide a basis for developing strategies to improve treatment and care for people with YOD and their carers. Information will be made available as to which services are best suited to meet the needs of this underserved group. RHAPSODY will deliver a model of a user-friendly, universally accessible and cost-effective type of healthcare intervention. The learning course will be made available to organisations working with people with dementia across Europe as a complement to existing services. Selected modules of the learning course will also be used in the training of healthcare professionals. Thus, RHAPSODY will contribute to increasing awareness and competence while reducing stigma with regard to YOD. 

Visit the main study website.

EPIC

Evaluating the effectiveness and cost effectiveness of Dementia Care Mapping™  (DCM™) to enable person-centred care for people with dementia and their carers: A cluster randomised controlled trial in care homes (EPIC trial).

The EPIC trial is a large multi-centre trial led by Professor Claire Surr at Leeds Beckett University. Professor Murna Downs, Head of the School of Dementia Studies is a co- applicant on the project and, with Ms Juni West, is responsible for ensuring implementation of the DCM intervention.

The study is funded by the Health Technology Assessment Programme of the National Institute for Health Research (project number 11/15/13).

The EPIC trial is a large multi-centre trial led by Professor Claire Surr at Leeds Beckett University. Professor Murna Downs is a co- applicant on the project and, with Ms Juni West, is responsible for ensuring implementation of the DCM intervention.

The study is funded by the Health Technology Assessment Programme of the National Institute for Health Research (project number 11/15/13).

At least two-thirds of people living in care homes have dementia and many develop distressing behaviours such as agitation. Distressing behaviours such as agitation have been linked to unmet needs in people with dementia and they can be reduced by delivering care that is more supportive of each individual’s specific and often complex needs. Research shows that training in Person-Centred Care provides staff with the skills they need to prevent and support distressing behaviours. However, without extra support for staff to build on their training, these benefits soon disappear. The trial will provide definitive evidence about the effectiveness and cost effectiveness of Dementia Care Mapping in reducing distressing behaviours such as agitation in care home residents.

The study will involve 750 people with dementia and care staff in 50 care homes. Care homes have been recruited from the North of England, London and Oxford areas. Of the 50 care homes recruited to the study 20 homes will continue to deliver their usual care. Thirty care homes will be randomly allocated to have staff trained to use Dementia Care Mapping™ in addition to delivering their usual care.

We will compare changes in behaviours such as agitation in residents, their quality of life, the number of NHS services they need, and the numbers and types medications used to treat or manage distressing behaviours they are prescribed/given. We will look at these things at the start of the study, after 6 months and after 16 months. The study will also measure quality of staff interactions with residents, how staff feel about their job, their general health and feelings of stress and the number of staff resignations and sickness in both groups of homes. 

Caregiving HOPE

Caregiving HOPE explores how obligations, preparedness and eagerness influences care and wellbeing. This research is supported by an Alzheimer’s Society Dementia Research Leaders fellowship awarded to Dr Sahdia Parveen in 2015.

There are currently 670,000 carers supporting a family member living with dementia. With an ageing population, more and more family members will be relied upon to support people living with dementia at home.

Health care professionals often assume those family members are willing and able to care for a person with dementia at home. However little is known about how willing and prepared carers of people with dementia feel and whether the next generation is prepared to support people living with dementia at home.

Visit our Caregiving HOPE page >>

Can Participatory Video (PV) enhance social participation and well-being for people with dementia in residential social care?

National Institute for Health Research-School for Social Care Research summary (external link).
Participatory Video is an approach to film-making which has been developed specifically with a view to the empowerment of people who are socially-marginalised and whose voices are unheard. Used to date predominantly in community development and with the socially disadvantaged, this was the first research study to trial PV with people who have dementia.

The aim of this study was to discover whether involvement in a PV group increases social participation and well-being for people with dementia.

National Institute for Health Research-School for Social Care Research summary (external link).

 

Participation involved 13 people with dementia living in long-term, residential social care; 11 women and two men; age range 76-99 years. Three participants were assessed to have capacity to consent for themselves to taking part in the study. For the remaining seven participants, personal or nominated consultees were appointed, all of whom were of the view that the person in question would have wished to take part at a time when s/he had capacity to give an informed decision.

This research is led by Dr Andrea Capstick at The University of Bradford with team members Dr John Chatwin, University of Salford and Dr Katherine Ludwin, University of Bradford and funded by the National Institute for Health Research – School for Social Care Research.

PV research findings report

What Works in Dementia Training and Education?

The aim of this study was to find out what factors contribute towards an effective training and education programme for health and social care staff.

Effective dementia training can improve staff knowledge, attitude and confidence and have a positive impact on those they provide care for.

It is a current government priority that all health and social care staff have the right knowledge and skills to deliver good dementia care.

Health Education England is keen to ensure all staff has the necessary training to deliver care for people living with dementia and want to find out what constitutes as good dementia education and training. 

The study comprised three interlinked work packages:

Work package 1 (led by Professor Claire Surr) structured review of all the evidence to get a clear picture of the ingredients needed for effective dementia training.

Work package 2 (led by Dr Sarah Smith and Dr Sahdia Parveen) two national surveys. Survey 1 to find out what training is currently being provided and implemented by care organisations. Survey 2 how useful staff found the training and the impact of training on staff knowledge, attitudes and confidence in providing care for people living with dementia.

Work package 3 (Led by Professor Jan Oyebode) 12 organisations to look at in more detail. Selected because their approach to training seems to be particularly effective. We collected data about their training models, staff knowledge and skills about dementia care and the experiences of people with dementia and their families using the service. This indicated what works and will help share good practice.

This is independent research commissioned and funded by the Department of Health Policy Research Programme. 

(Understanding Effective Dementia Workforce Education and Training: A Formative Evaluation (DeWET Evaluation), PR-R10-0514-12006).The views expressed in this publication are those of the author(s) and not necessarily those of the Department of Health.

The Department of Health’s Policy Research Programme (PRP) commissions, funds and manages leading edge research that is focused on the needs of Ministers and policymakers for evidence to inform policy. PRP provides timely evidence for current policy needs and builds the evidence-base for future policy-making. 

Information Programme for South Asian Families (IPSAF)

The Alzheimer’s Society developed a culturally tailored Information Programme for South Asian Families (IPSAF). The aims of the programme were to improve the knowledge, skills and understanding of South Asian families caring for someone living with dementia. Each programme consisted of four sessions delivered by Alzheimer’s Society facilitators with co-facilitators from local South Asian community organisations. Dementia Studies was commissioned by the Alzheimer’s Society to conduct an external evaluation to:

  1. report on the immediate and medium-term impact of IPSAF on the lives of those carers/relatives who attended
  2. report on the immediate and medium-term impact of IPSAF on the wider families, including the person with dementia, of those who attended
  3. report on whether and how IPSAF has raised attendees knowledge and / or use of services and sources of information and support
  4. report on how carers / relatives experienced attending a group with their peers 
  5. find out and report whether stakeholders feel aspects of adaptation for SA communities that are embedded in IPSAF could be applied in other parts of the Alzheimer’s Society or more widely
  6. report on the experiences of the organisations involved in IPSAF of partnership working

The study involved:

  • 7 focus groups with 42 IPSAF participants
  • 9 semi-structured interviews with 11 Alzheimer’s Society staff members
  • 5 semi-structured interviews with 6 community partners
  • A ‘before and after’ knowledge quiz with participants
  • 7 semi-structured family interviews completed within 3 months of attending IPSAF
  • 3 follow-up semi-structured family interviews completed 6-8 months after attending IPSAF
  • Observation of 4 IPSAF sessions at 4 different sites; attendance at IPSAF familiarisation courses and teleconferences

The project was led by Professor Jan Oyebode: j.oyebode@bradford.ac.uk and Dr Sahdia Parveen

Improving the Dementia Care Pathway for South Asian Families

Research suggests that people living with dementia from Minority Ethnic (ME) backgrounds access specialist dementia services at a late stage and more often ‘in crisis’, and tend to drop out of Memory Assessment and Treatment services (MATS)  before they access information about post-diagnostic support. This is not ideal as without post-diagnostic support, the quality of life of the person living with dementia and their family members will be poor, and relationships may be strained.

In Bradford, diagnostic rates of ME groups are good but 40% of these families (particularly South Asian families) drop out from (MATS), compared with 9% of indigenous families.  We are:

  1. exploring why persons with dementia from South Asian families drop out from the care pathway and establish key barriers and facilitators to complete the care pathway.
  2. producing recommendations about the changes or developments required to ensure successful and integrated services that meet the needs of these families.

We applied an evidence-based, targeted, behaviour change approach (the Theoretical Domains Framework, TDF) to improve timely access to specialist dementia assessment and to post-diagnostic information and support.

Activity included:

  • Eight family interviews to explore family experiences of post diagnostic support,
  • Follow up interviews four months later to establish any changes in their experiences of the care pathway.
  • Three focus groups with South Asian people living with dementia and their carers.

Participants were recruited from community groups within Bradford and surrounding areas. To be included in the study, the person with dementia had to be aged 65 years or over, the primary reason for referral to MATS was memory problems and the person had to have attended at least one appointment at MATS within the last 12 months. Those with a previous history of head injury, alcohol/drug abuse or other mental health co-morbidities were excluded.

The benefits are:

  • Improvements in the dementia care pathway for South Asian communities
  • Potential increased efficiency in the MATS service by reducing the number of missed appointments, allowing the MATS services to respond more quickly to incoming referrals. It is also expected that it would reduce re-referrals made in a crisis.
  • Scope to roll out more widely to other areas of the country
  • Scope to extend to other communities of interest and cultural groups.

The projest was funded by the Research Capability Funding (RCF). LEad academic was Professor Jan Oyebode: j.oyebode@bradford.ac.uk.

Journeying through Dementia

Journeying through Dementia is a large-scale research study that aims to find out whether attending a 12-week community programme has a positive impact on the quality of life for people who are living with the early stages of dementia.

The Journeying through Dementia community programme is based on research evidence and consultation with approximately 30 people living with dementia and their family members/friends. It is a 12-week community programme focused on assisting people to self-manage their condition and continue to enjoy life following a diagnosis.

The study is funded by the National Institute for Health Research - Health Technology Assessment (14/140/80). It commenced in December 2015 and will run for three and a half years until June 2019. The award is held in partnership with Sheffield Health and Social Care Trust and takes place across ten UK sites, working in collaboration with a number of NHS trusts and Universities.

Find out more about this project >>

 

The ANGELA Project

The ANGELA Project aims to improve diagnosis and post-diagnostic support for younger people with dementia and their families/supporters and comprises the following two work-streams:

  • Work-stream 1, which aims to provide guidance for accurate diagnosis. The objective of this work-stream is to develop a diagnostic guide for health professionals and clinicians. This guidance will also address how the process of receiving a diagnosis is experienced by younger people with dementia and their supporters.
  • Work-stream 2, which seeks to provide guidance for improving the services and support offered after diagnosis. The objective of this work-stream is to offer service providers and commissioners examples of best practice and the needs they meet across the care pathway. Thus, this will support them in improving the post-diagnostic care and support offered to younger people with dementia and their families/supporters.

Visit The ANGELA Project website >>

The 4 D Project (Diagnosing and Detecting types of Dementia and Delirium in the community)

This study aims to:

  1. Develop a scoring aid for healthcare professionals to distinguish between different types of dementia in memory services. 
  2. Explore how health / social care professionals and family carers detect and manage when a person living with dementia also has delirium.

It is funded by Sheffield Health and Social Care NHS Foundation Trust through the National Institute for Health Research, Research Capability Funding grant. The study started in October 2018 and will last for nine months. Information will be gathered in Sheffield only.

Find out more about the project >>