Previous projects

An evaluation of the 'Dementia Adventure in a Box' Project

Dementia Adventure is a social enterprise whose overall objective is to build long term innovative and mutually beneficial partnerships which directly increase the choices on offer for people living with dementia – specifically connecting them to outdoor nature based adventures through the support of confident, trained Dementia Adventure leaders. A recent initiative has seen the piloting of ‘Dementia Adventure in a Box’, funded by the Big Lottery Foundation. This is a ‘social licence’ scheme under which, for an annual fee, Dementia Adventure provides expertise and support to organisations who become skilled in delivering the Dementia Adventure ‘product’.

The Association for Dementia Studies at the University of Worcester are led an evaluation of the pilot, in collaboration with the Green Exercise Research Team at the University of Essex. The evaluation used a mixed methods approach in order to measure progress against the project aims and to explore in detail the process of implementation with project partners and individual delegates, the outdoor activities they provide and the resulting impacts on people living with dementia and their carers. This 3 year project ended in June 2020 and a copy of the final report is available here.

Creative Ageing Programme

Concerned that arts projects need to be sustainable, The Courtyard developed toolkits to "support continued delivery in care homes, and also the option of care homes" as well as looking at other methods towards sustaining arts projects for people who are older and/or living with dementia.

The Courtyard was awarded funding to run their ‘Creative Ageing’ programme for a 3-year period, ending in August 2019, which comprised a wide range of activities. The Courtyard commissioned the Association for Dementia Studies to carry out an evaluation of this programme over two years.

The evaluation sought to capture the success of this project in addressing the following three outcomes as stated in the Creative Ageing project proposal:

  • Improve wellbeing for older people and their carers through participation in high quality creative experiences
  • Cultivate opportunities for older people to maintain wider social networks and reduce social isolation through participatory arts projects
  • Develop specialist skills in the local community to provide varied and sustainable age-appropriate activities in older people’s settings.

For more information about this project please contact Dr Simon Evans.

Walking with purpose

The principle aim of this study was to explore and understand walking with purpose among people living with dementia in extra care, retirement and domestic housing settings, along with the perceptions and responses of staff and family carers, in order to develop good practice guidelines.

Namaste Care Intervention UK

Delivering excellent care every day for people living with advanced dementia.

Namaste logos

The Association for Dementia Studies was awarded an implementation grant from the Alzheimer’s Society to carry out a 3 year project from 1st October 2016 to help UK-based care homes to provide better care for people with advanced dementia by an evidence based intervention that provides a practical, systematic approach to meet the physical, sensory and emotional needs of people living with advanced dementia.

Namaste is a multi-component intervention developed in the USA shown to reduce distress behaviours, pain, use of antipsychotics, hypnotics and depressive symptoms and inappropriate hospitalisation in people living with advanced dementia.

In this project evidence from research and practice in the UK was synthesised to establish the optimal intervention. The research team worked with existing Namaste practitioners and 6 care homes who implemented Namaste for the first time, finding the best ways that the Namaste programme could be used successfully. This included identifying things that helped or hindered developing the programme in the care home and making sure that it was acceptable to people with dementia and their families.

The outcome was an in-depth description of the optimal intervention in the form of a guidance manual together with expert practitioners who can mentor new programmes. The optimal intervention is now ready to roll out across care homes with information about how to implement it successfully, a cost model, information around staffing and resource use.  This includes guidance on how to deal with common barriers e.g. competing priorities, lack of time, staff changes, engaging families and regulators. 

In addition, an on-line “Community of Namaste Practice” was built to gather feedback from multiple sites throughout the research. This is now accessible to anyone interested in finding out more about Namaste Care Intervention UK.

The Research Team

  • Professor Dawn Brooker PhD: Principal investigator
  • Caroline Baker (Co-applicant): Director of Dementia Care at Barchester Healthcare. Has extensive experience of change management in dementia care
  • Professor Darrin Baines (Co-applicant): Health economist who is well versed in modelling and statistical analysis, and economic evaluation
  • Roy and Ros Dibble (Co-applicants) are members of the Association for Dementia Studies LINK (Experts by Experience) group. Ros was a director of a large multi-national IT company based in the UK before contracting Alzheimers (Posterial Cortical Atrophy). Roy was Chief Executive of two government agencies.

University of Worcester research team

  • Isabelle Latham, Senior Lecturer at ADS University of Worcester. Research Project management and care home data collection. 
  • Faith Frost, Research Associate investigating the application of Namaste Care in care homes in the UK 
  • Jennifer Bray, Research Assistant at ADS, University of Worcester. Survey design, data support and management.
  • Mike Watts, Project Administration.

Collaborators

In addition the following experts were involved in the research:

  • Joyce Simard Associate Professor, University of Western Sydney Australia
  • Ladislav Volicer, MD, PhD, Professor, School of Aging Studies, University of South Florida
  • Min Stacpoole RN, MSc, Clinical Nurse Specialist in palliative care for people with dementia at St Christopher’s Hospice
  • John Killick, Director of Dementia Positive

Briefing paper - Project overview

Namaste Care UK Project Overview

Resources from the project

The following resources have been produced as a result of the project and are available to use:

Two poems capturing the experiences of residents with dementia were also created during the project and can be found via the following links:

 

For more information please contact us via dementia@worc.ac.uk or 01905 542531.

 

Researching the impact of the Worcestershire Dementia Dwelling Grants

The six district councils that sit across Worcestershire, led by Worcester City Council, have collaborated on the development of a new grant for people living with dementia to improve their wellbeing and to enable them to stay at home longer before having to move into residential or other long-term care. The Dementia Dwelling Grant (DDG) provides aids and home adaptations that are thought to benefit people living with dementia. The Association for Dementia Studies carried out an independent evaluation of the pilot programme during 2017/18.

The evaluation combined qualitative and quantitative methods including case study interviews in order to explore the effect of the DDG on people living with dementia at home and to provide the Council with evidence to inform its future planning and for dissemination to other local authorities and interested parties. Our findings indicate that relatively low level aids and adaptations can make a positive contribution to the quality of life and wellbeing of people living with dementia in their own homes, as well as their family carers. The DDG has now been extended beyond the pilot period.

A final report of this project can be found here and a journal paper based on the evaluation can be downloaded here.

For further information about this project please contact Simon Evans simon.evans@worc.ac.uk

ECHO - The Provision of Social Care in Extra Care Housing

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ECHO - The Provision of Social Care in Extra Care Housing

The ECHO project is a two year study which is funded by the Department of Health (DH), National Institute for Health Research (NIHR) and the School for Social Care Research (SSCR). 

The project started in October 2015 and its broad aim is to explore how care is negotiated and delivered in extra care housing schemes for older people. Find out more about the ECHO project. 

The ECHO project is a collaboration between the School for Policy Studies at the University of Bristol, the Association for Dementia Studies at the University of Worcester, the Personal Social Services Research Unit at the University of Kent, and the Housing Learning and Improvement Network. The team is led by Ailsa Cameron, senior lecturer based at the Centre for Research in Health and Social Care, School for Policy Studies, University of Bristol.

A NIHR report on the project findings can be viewed and downloaded by clicking here.

Watch these videos

At the Future of Extra Care Workshop in Bristol in January, two videos were launched that focus on this NIHR SSCR funded project that explores how care is negotiated and provided in extra care housing schemes for older people. 

Undertaken by researchers from the universities of Bristol, Worcester and Kent, the ECHO project’s first film, ‘Listening to residents in extra care housing: findings from the ECHO research project’, documents the key objective of the ECHO project, to gain residents' first-hand perspective on living within their extra care scheme. 

The second film, ‘Influencing policy and operations: outcomes from the ECHO research project’, looks into the ECHO project’s more professional approach, documenting the findings of dialogue between commissioners and managers from ECH schemes.

ECHO Research Findings: Film 1

 

Listening to residents in extra care housing: findings from the ECHO research project.


ECHO Research Findings: Film 2

 

Influencing policy and operations: outcomes from the ECHO research project. 

 

 

 

Green Dementia Care

Green Dementia Care

Green dementia care in accommodation and care settings – opportunities, barriers and good practice.

This 12 month mixed methods pilot study, funded by the Abbeyfield Research Foundation, explored the opportunities, good practice, enablers and barriers relating to green (nature-based) dementia care for people living with dementia in accommodation and care settings, particularly care homes and extra care housing schemes or villages. Key research tasks included: examining current evidence for the impact of interaction with the natural environment on people living with dementia; gathering information on opportunities for people living with dementia in these settings to engage with the natural environment; and exploring barriers and enablers to engagement. The study was conducted by the Housing and Dementia Research Consortium (HDRC) in partnership with the Association for Dementia Studies (ADS) at the University of Worcester.

There is growing interest in the impacts of engaging with nature on the physical, psychological, emotional, social and spiritual health and wellbeing of people living with dementia. Green dementia care refers to indoor and outdoor experiences and activities that aim to promote health and wellbeing through interaction with nature for people living with dementia. It includes a range of health-promoting interventions encompassing living organisms (plants and animals) and natural elements (e.g. the weather). Green care links traditional health care to gardening (horticultural therapy), agriculture (green care farming), animals (animal assisted interventions) and exercising in the natural environment (green exercise).

Increasing numbers of people with dementia are supported in care homes (residential care homes or care homes with nursing), while extra care housing is now widely viewed as an alternative form of accommodation that can provide opportunities for maximising independence. Many people living with dementia in such settings have limited opportunities to connect with the natural world often due to organisational concerns about safety and security and outdoor spaces that are not fully accessible. For people with dementia the loss of nature in their lives is often sudden and occurs when they move from their own home into accommodation and care settings. Due to fears about the physical risks involved, residents living with dementia are often discouraged from going outdoors, which means that they can quickly lose confidence to go outdoors with or without support. This puts them at risk of losing their nature relatedness (personal connection to nature) and the benefits engaging with nature may bring to their health and wellbeing.

It is hoped that the findings of this pilot study will inform the development of a large-scale multi-site, multi-provider research project involving in-depth evaluation of the impact of nature-based interventions on the health and wellbeing of people with dementia in care settings. This research theme is one of the top research priorities of the Housing and Dementia Research Consortium (the HDRC is a UK wide network of around 100 housing and care providers and commissioners and other interested parties including academics, architects, advisors, researchers, policy makers and third sector organisations committed to research and knowledge exchange across the sector). High quality, large-scale research in this area is necessary in order to inform policy and practice concerning green dementia care, including any impacts on the health and wellbeing of individuals and the cost effectiveness of care. This pilot study was an important step in developing an understanding of the opportunities for people living with dementia in residential care and extra care housing to engage with the natural world, to explore what works and why, and to identify the main barriers and enablers to engagement.

A summary report of the study can be found HDRC green Dementia care. 

 

Courtyard Theatre - Making of Me

The Courtyard in Hereford has provided access to the arts for the older rural population since 2010. Their 'Making of Me' project was successfully piloted and evaluated by the Association for Dementia Studies (ADS) in 2014 (see Lillyman et al., 2014). During the pilot, a unique mentoring model was employed wherein a poet with considerable experience working with people who are living with dementia delivered training to four poets over several days. Following this training, the mentees shadowed the mentor during sessions in care home settings and received ongoing support. The evaluation showed that this model positively impacted on the mentees, and was well received by the residential recipients.

The second phase of the project was funded by The Baring Foundation, and ADS was commissioned to provide an independent evaluation. During this second phase 'Making of Me' extended the mentoring model to include three creative art forms - poetry, dance, and drama. Previous studies have shown that it is essential that creative arts specialists be trained to develop interpersonal skills in order to gain the confidence of older care home residents, in particular, residents living with dementia. It is also important that arts specialists are aware of potential barriers and communication issues common to this population (Dobson, 2000; Mottram, 2003; Coaten et al., 2013). A primary aim of this study was to provide a legacy of trained staff members towards who would be able to continue similar arts-based sessions within the participating care homes. While the evaluation confirmed the benefits for all involved in this model of mentoring, successful sustainability through training of care staff remains a difficult prospect.

MeetingDem

Dementia Project (MEETINGDM JPND)

The Association for Dementia Studies was awarded a European Union research grant in order to carry out potentially vital work in helping people and families living with dementia. The aim of the project, known as MEETINGDEM, supported through the EU Joint Programme - Neurodegenerative Disease Research (JPND), was to implement and evaluate the Meeting Centres Support Programme which has achieved great success in the Netherlands. The Meeting Centres Support Programme (MSCP) provides an innovative way of supporting people with mild to moderate dementia and their families through an evidence-based, person-centred approach.

The research grant trialled the approach in three countries – the UK, Italy and Poland. Professor Dawn Brooker led the project in the UK in collaboration with Professor Martin Orrell from University of Nottingham (formerly at University College London) and ADS led the work on the evaluation methodology for the whole programme. The ADS team included Dr. Simon Evans, Dr Shirley Evans, Teresa Atkinson, Nicola Jacobson-Wright, Nicky Bradbury and Mike Watts.

The UK research team was funded by the ESRC (Economic & Social Research Council)  Grant reference: ES/L00920X/1

For more information

 

Additional videos

 

Refreshing the Admiral Nurse Competency Framework 

 

Dementia UK logo

The Association for Dementia Studies worked with Dementia UK to refresh their Admiral Nurse Competency Framework. The Framework which has existed since 2003 was updated in 2012, but the role of Admiral Nurses has evolved greatly in the past few years. The range of settings in which Admiral Nurses currently work has become more diverse, and the complexity of the Admiral Nurse role is often underestimated. It was therefore decided that the Admiral Nurse Competency Framework should be refreshed to reflect these changes and become a practical resources supporting Admiral Nurses in their day-to-day work.

The Association for Dementia Studies, therefore, undertook a variety of activities to gather information regarding the requirements for the Admiral Nurse Competency Framework, involving the Admiral Nurses at every stage to ensure that the refreshed Admiral Nurse Competency Framework reflects their needs and is fit for purpose. When working on the new Admiral Nurse Competency Framework, the Association for Dementia Studies used the following as its guiding principles:

  • Streamline the framework whilst ensuring it still underpins practice

  • Incorporate the essence of the previous framework, but in a way that reflects the current practice context and makes it applicable to a range of settings

  • Articulate the complexity of the Admiral Nurse role

  • Use evidence-based reflective practice as the cornerstone of the framework

  • Ensure it supports the NMC revalidation process and appraisal processes within host organisations

  • Make it compatible with being uploaded into PebblePad

We are proud to say that the final version of the refreshed Admiral Nurse Competency Framework was formally delivered to Dementia UK in May 2016. In order to ensure that the Admiral Nurse Competency Framework becomes fully embedded into Admiral Nurse practice, the Association for Dementia Studies was then involved in a programme of roll-out activities from September 2016. This included presenting the Admiral Nurse Competency Framework at the Admiral Nurse Forum in a series of interactive workshops and attending Practice Development Days with every regional group of Admiral Nurses to help them understand the skills and processes required to fully engage with the Admiral Nurse Competency Framework.

The Admiral Nurse Competency Framework has been developed as an online PebblePad workbook, enabling Admiral Nurses to easily gather appropriate evidence in one central location within their own individual portfolios. These can be used to support the NMC revalidation process and appraisals within their host organisations.

For further information about our work around the Admiral Nurse Competency Framework see this Dementia UK news item, the project summary, or contact us at dementia@worc.ac.uk

ABMU Training Evaluation 

We have been commissioned by the Abertawe Bro Morgannwg University (ABMU) Health Board in Wales to evaluate their Dementia Training Programme.

This work will adopt mixed research methods to explore: 

  • the impact of training on practice, from both a staff and a patient/carer perspective;

  • transfer of knowledge achieved through this training identifying different levels of staff; 

  • the support mechanisms in place to enable the embedding of the theory from the training into practice whilst acknowledging any potential barriers; 

  • the impact of the training in relation to the Butterfly Scheme which is currently identified as hospital practice 

Evaluation report

The evaluation report was completed towards in 2016 and provided a detailed analysis of the current training programme, along with recommendations for any relevant changes. 

project summary is currently available.

Contact us

For further details contact simon.evans@worc.ac.uk

Evaluation of Keys to Care Resource

 

residents_and_relatives_association

 

The Residents and Relatives Association commissioned the Association for Dementia Studies to evaluate the use and impact of its Keys to Care resource. Funded by Comic Relief this six-month project looked at the ways in which the resource is being used and the impact it has had across three different care providers.

The final report was completed in February 2016 and is available here.

If you have any questions regarding this evaluation, please contact us on 01905 542531 or via email at dementia@worc.ac.uk.

 

Sound Healing

"The therapeutic application of sound frequencies to the body/mind of a person with the intention of bringing them into a state of harmony and health" (The College of Sound Healing)

Although there have been previous studies on the use of music therapy and therapeutic music intervention for people with dementia in care homes, there is limited information on the impact of sound separate from interaction with a therapist/facilitator and peers. Anecdotal evidence suggests that playing therapeutic sounds in the environment may have a calming influence on both residents and staff, and reduce levels of agitation.

Devised by Lenni Sykes alongside the Association for Dementia Studies, the ‘Therapeutic sound for care home residents with dementia’ project will explore the potential effects of therapeutic sound and how to measure them.

The project was initiated by Lenni following her positive experience of using therapeutic sound with her mother in a nursing home setting. She observed beneficial effects when using an instrument called the Freenotes Wing, and this experience has informed the focus of the project. During the project, Lenni will be the sound practitioner and ADS will evaluate the impact of the project and explore the effects of therapeutic/healing sound. It is hoped that the project will lead to a larger evaluation adopting an experimental methodology. 

My Musical Memories 

The Alzheimer's Society's ‘My Musical Memories Reminiscence Programme’ (MMMRP) aims to use music to create the opportunity for people with dementia, through facilitation and support, to recall their past history.

The MMMRP consists of a series of small group sessions for people with dementia and is loosely based on the theme of the BBC radio show, ‘Desert Island Discs’. Each session has a separate theme such as ‘work’ or ‘weddings’ and the music used is tailored to the preferences of the participants.

The Association for Dementia Studies has evaluated the design and impact of the MMMRP, and a project summary is available.

Connecting Communities Project

The Alzheimer’s Society was awarded funding from the Department of Health for an innovative three-year pilot project to engage volunteers from Black, Asian and Minority Ethnic (BAME) communities to design and deliver awareness raising activities appropriate for diverse communities across eight London boroughs. The Connecting Communities Project aimed to increase:

  • Engagement with BAME communities and community specific dementia health care providers
  • Dialogue between BAME communities and the Alzheimer's Society and wider stakeholders
  • Dementia awareness and knowledge of dementia care services in BAME communities
  • Understanding amongst professional groups of dementia specific issues faced by BAME groups

The Association for Dementia Studies was commissioned to evaluate the impact of the project and assess the extent to which the project met the expected outcomes. The final project report is available here and there is also a project summary.

If you would like further information about this project please contact Jennifer Bray at j.bray@worc.ac.uk or visit the Alzheimer's Society website.

Fits into Practice - Reducing anti-psychotic prescribing 

In 2013-2015 ADS delivered and evaluated the Focussed Intervention Training and Support (FITS) programme. The project was funded by the Alzheimer’s Society and HC-One. It followed an initial trial which found the programme reduced the use of antipsychotics in care homes by 50%. These drugs are inappropriately prescribed to 144,000 people with dementia, and double the risk of death, treble the risk of stroke and can leave people unable to walk or talk.

This programme was to translate that initial trial into practice which could be replicated across the UK. 10 groups of Dementia Care Coaches were trained and supervised by a Dementia Practice Development Coach to implement person-centred care in their care homes and reduce the inappropriate use of anti-psychotic medications in their care homes. This approach was successful in reducing the use of anti-psychotics, improving person-centred approaches in care homes and improving the knowledge and confidence of staff in delivering person-centred care.

Practitioners can now study to undertake the role of Dementia Practice Development Coach in their own organisations. The FITS into Practice programme is the basis of the new Expert Practice in Delivering Person-Centred Dementia Care module/Award. For further information about this programme please contact dementia@worc.ac.uk

A copy of the programme report can be viewed and downloaded here. project summary is also available. Two publications are available reporting the findings of this programme:

  • Latham, I & Brooker, D (2017) Reducing anti-psychotic prescribing for care home residents with dementia. Nurse Prescribing 15 (10)
  • Brooker, D., Latham, I., Evans, S., Jacobson, N., Perry, W., Bray, J., Ballard, C., Fossey, J., and Pickett, J. (2015) FITS into Practice: translating research into practice in reducing the use of anti-psychotic medication for people with dementia living in care homes. Ageing & Mental Health 20 (7)

 

Dementia Development Programme  

Independent Evaluation of the RCN Transforming Dementia Care in Hospitals Programme

In May 2014 the Royal College of Nursing (RCN) published the results of a major year-long programme which has seen nine NHS trusts develop innovative ways to improve dementia care in hospitals.

The programme, which was funded by the RCN Foundation, was launched at the Transforming Dementia Care in Hospital conference and included a number of examples of strategies such as trust-wide education programmes, improving individualised care and supporting family carers.

The Association for Dementia Studies carried out an independent evaluation of the programme and showed that commitment and leadership from trust boards, as well as investing in dedicated dementia nurse specialists, was integral to achieving improvements in dementia care.

The programme was found to help clinical leads achieve some very positive outcomes for patients and improve engagement with family carers over a relatively short period of time.

Dr Peter Carter, Chief Executive & General Secretary of the RCN, said: “High quality care for people with dementia will require dedicated time and resources, as well as strong leadership from trust boards. With more than 900,000 people with dementia attending NHS hospitals every year, this is not an issue which can be ignored. Without dedicated time and resource to network, share learning and evaluate practice, high quality care for people with dementia will be difficult to deliver across the NHS.”

Read the summary document here

Anchor iPad evaluation

Study reveals iPads have ‘substantial potential’ to improve quality of life for people living in care homes

  • The Association for Dementia Studies at the University of Worcester has carried out the largest study of its kind to understand how iPads can be used to enhance quality of life for people with dementia
  • In the first systematic roll-out of iPads in care homes, Anchor has introduced tablets to 63 of its care homes across England
  • Findings demonstrate the benefits of introducing and using touchscreen technology in care settings
  • Good practice guide published to share findings

A copy of the Press Release relating to the evaluation can be found here 

Admiral Nurse roles in Care Homes 

ADS worked with the Orders of St John Care Trust to evaluate the "My Home Life Admiral Nurse" role in Orders of St John Care Trust care homes. It is unusual for care home organisations to employ Admiral Nurses directly and so an exploration of the impact of such a role was important.

The project was funded by the Orders of St John Care Trust and the Burdett Trust, and was completed in January 2015.

See a copy of the final report.

The findings of this research can also be found in the following publication: 

  • Latham, I., Evans, S., Atkinson, T., and Elliot, V. (2015) Admiral Nursing in Care Homes. Journal of Dementia Care, 23 (6). pp. 26-29. ISSN 1351-8372

Prime Minister's Challenge - Intergenerational School's Project

 

IntergenerationalSchoolsProject

  In 2010 ADS, in collaboration with NHS West Midlands, were involved in the development of a set of teaching resources designed to raise awareness and inform children and young people about dementia. They were developed because a survey found that awareness of dementia and services to support people with dementia among the general population was very low, and young people in particular had very limited understanding. These teaching resources aimed to address this gap in knowledge and include a short film about two young people who reflect upon their experience of their relationship with their grandfather and how it is affected by dementia. It is hoped that these resources will be used not only in the West Midlands but more broadly across the UK, by teachers, and others who work with children and young people to raise awareness.

The Dementia Friendly Communities: Schools and Intergenerational Agenda undertook a pilot project to tackle stigma and raise awareness and understanding of dementia in primary and secondary schools. The project covered areas such as:

 

  • Understanding dementia
  • Appreciating the difficulties of being a carer
  • Understanding assistive technologies and their applications
  • Meeting people with dementia and their carers
  • 22 'Pioneer Schools' devised their own curriculum approaches to address these areas at Key Stages 2, 3 & 4.

ADS was commissioned to evaluate the impact of this pilot project. Working with the West Midlands Strategic Health Authority and Coventry & Warwickshire NHS Partnership Trust, ADS developed an Evaluation Pack to capture changes in pupils’ attitudes, beliefs and values in relation to dementia.

The interim report looking at the baseline findings, and the final evaluation report can be accessed here:

Interim report

Final report

Based on the work done by the Pioneer Schools a set of resources for schools has been developed and can be accessed via the Alzheimer's Society website.

Adult Social Services Environments and Settings (ASSET)

This project was funded by the National Institute of Health Research; School for Social Care Research. It was conducted by a team of professionals between 2012 and 2016

This research project explored the views and experiences of people commissioning, delivering and receiving adult social care services in extra care housing and retirement villages. These two forms of later life housing, known collectively as ‘housing with care’, have become increasingly popular in the UK during the past ten years, but are still embryonic in comparison with sheltered housing and residential care. The government has provided significant funding for these settings because of their capacity to support independence for older people in their own homes. Housing with care is very popular among those living in such schemes for a range of reasons, including the opportunities for social interaction, the availability of comprehensive facilities on site, and because the physical environment is purpose built to meet the needs of older people. Despite a growing body of research focusing on this area, there is a dearth of research into the provision of adult social care in housing with care settings. The ASSET project aimed to fill this gap by collecting information from those living and working in extra care housing and retirement villages, as well as local authority commissioners. ASSET - in partnership.

Contact: dementia@worc.ac.uk 01905 542531

Teresa Atkinson, Senior Research Fellow, 01905 542530

EU Alcove Project

 

alcove logo

 

Sharing knowledge to advance healthcare policies in Europe for people living with dementia and their carers

Background

A report published by Alzheimer’s Disease International in 2011 suggested that up to 28 million of the 36 million people living with dementia across the world have yet to receive a diagnosis, limiting their access to treatment, information and care. The report also stated that lack of detection is a significant barrier to improving the lives of people with dementia as well as their families and their carers, and that the costs of early detection can be offset by projected future savings. The report recommended that every country should have a national dementia strategy that promotes early diagnosis and intervention.

The European Union has been quick to respond to this increasingly urgent agenda and to recognise the need to address the health, social and economic issues that dementia poses for society. In 2007 the European Commission (the EU’s executive body) funded the project “European Collaboration on Dementia – EuroCoDe”. This project, led by Alzheimer’s Europe, included work to provide an overview of national, international and European guidelines on the diagnosis and treatment of dementia.

In 2009, the European Parliament adopted a written declaration on the priorities in the fight against Alzheimer’s disease. This declaration called on the European Commission and the member states to develop a European Action Plan and to collaborate in order to improve early diagnosis and the quality of life of people with dementia and their carers. In July 2009 the European Commission issued a commitment to support member states in addressing the issue of dementia.

Project overview

The EU Joint Action on Alzheimer’s initiative (ALCOVE) was launched in 2011 in an effort to step up cooperation and support to improve prevention, diagnosis, treatment and care across European Member States. ALCOVE was a two-year project addressing four core areas:

  • How to improve data for better knowledge about dementia prevalence;
  • How to improve access to dementia diagnosis as early as possible;
  • How to improve care for people living with dementia and particularly those with behavioural disorders;
  • How to improve the rights of people with dementia, particularly with respect to advance declarations of will.

Project organisation

The project was split into seven Work Packages with each being lead by a different EU country:

  • Work Package 1 – France
  • Work Package 2 – Spain
  • Work Package 3 – Slovakia
  • Work Package 4 – Italy
  • Work Package 5 – UK
  • Work Package 6 – Finland
  • Work Package 7 – Belgium

ADS involvement

In December 2011 ADS was invited to tender by the Department of Health to lead Work Package 5 to address the issue of Early Diagnosis and Interventions with the following objectives:

  • To compare national recommendations for the diagnosis of dementia, in order to access a common definition;
  • To assess different approaches of healthcare systems to develop recommendations to improve early diagnosis. 

Since then we have worked alongside colleagues from countries all over Europe to produce a set of evidence-based recommendations for policy makers across the EU on dementia, specifically addressing:

  • Prevalence and Epidemiological Data
  • Quality and Timeliness of Diagnosis
  • Strategies for Behavioural and Psychological Symptoms
  • Ethical and Legal Issues for Advanced Directives and Competency Assessment
  • Antipsychotic Limitation in Dementia

The ADS team consisted of:

The Work Package 5 project team also included a number of key stakeholders from the UK:

  • Professor Alistair Burns – National Clinical Adviser for Dementia
  • Jerry Bird – Department of Health Project Manager on the Dementia Strategy
  • Dr Karim Saad – Department of Health Clinical Adviser on the ALCOVE project
  • Peter Ashley – Honorary Masters Degree from University of Worcester
  • Dr Bernie Coope – Lead Consultant for Older Adult Services with Worcestershire Mental Health Trust

The team worked with the following representatives and associate partners to coordinate the collection of information from each of the 27 EU Member States:

  • Anders Wimo – Sweden
  • Vladimirs Kuznecovs – Latvia
  • Petr Novak – Slovakia
  • Gemma Villanueva – Spain
  • Eleni Margioti – Greece
  • Armelle Desplanques – France
  • Daiva Rastenyte – Lithuania

The focus of the work was on:

  • Comparing mechanisms to provide for the early diagnosis of dementias e.g. Memory Clinics;
  • Exploring the role of general practitioners in ensuring early diagnosis;
  • Conducting an assessment of recommendations and strategies for systematic screening.

This programme is now complete and we presented our findings at a ministerial level event to launch the main outputs in Paris on 28th March 2013. Professor Dawn Brooker and Dr Karim Saad presented the work from the UK alongside Professor Anders Wimo. Also in our delegation were Jenny La Fontaine, Jennifer Bray, Jerry Bird and Peter Ashley.

The audience included delegates from 24 countries and speakers included:

  • Jean-Paul DELEVOYE, President of the French Economical, Social and Environmental Council 
  • Jean-Luc HAROUSSEAU, President of the French National Authority for Health
  • Michael HÜBEL, Head of Programmes & Knowledge management, Health & Consumers DG, European Commission
  • Alistair BURNS, National Clinical Director for Dementia, United Kingdom
  • Michèle DELAUNAY, French Minister of the Elderly and the Autonomy

The recommendations and associated reports will be of interest to all those working in the field as they tackle some of the most challenging issues facing health and social care.

For the most up to date information you are directed to the project summary

Additional information:

For further information about ALCOVE please contact simon.evans@worc.ac.uk or d.brooker@worc.ac.uk.

 

Dementia and Sight Loss Project 

Dementia and sight loss: Developing social care practice in different housing settings

This independent project was commissioned by the National Institute for Health Research School for Social Care Research. The project ran from July 2012 until January 2014 and was led by the Centre for Housing Policy at the University of York, in collaboration with the Association for Dementia Studies at Worcester University, Bournemouth University Dementia Institute, and the Cambridge Centre for Housing and Planning Research at Cambridge University. The overall aim of the project was to investigate how best to provide care and support for adults living with sight loss and dementia in a range of housing settings.

Meeting the social care and support needs of people with concurrent dementia and sight loss presents complex challenges. However, the policy aspiration to enable a greater proportion of people with complex needs to live and die in their own homes requires the specific challenges of providing care and support in these settings for people with concurrent dementia and sight loss to be understood and addressed. Previous research has highlighted a number of factors which limit the effective delivery of social care and support specifically for people with concurrent sight loss and dementia, not least that models of care need to respond to both conditions, rather than working in isolation.

This project aimed to address this gap by building evidence for developing practice guidance in social care and support for people with dementia and sight loss in a range of housing settings. The research drew on the experience of people living with dementia and sight loss, family members where present, and a range of service providers, commissioners and support planners to explore current practice in social care from a range of perspectives, and to identify models of practice, areas where practice could be enhanced and improved, and areas where there is a divergence of evidence.

The research team brought together the necessary range of expertise and skill sets from across the four partner universities and key experts from the Thomas Pocklington Trust and Housing and Dementia Research Consortium in order to address the complexity of examining models of social care delivery to people with concurrent sight loss and dementia within independent living settings.

The findings from the Project can be viewed project summary.

The main outputs from this project will include evidence-based practice guidance and key principle statements highlighting how social care and associated support can best be delivered to people with dementia and sight loss living in a range of housing settings. The development of the guidance included a stakeholder Consensus Event with practitioners, key experts and people with dementia and sight loss and family members. The results will be disseminated to a wide range of audiences via a programme of activities and through a diverse range of media including lay summaries, presentations and online resources.

For further information please contact:

Dr Simon Evans: simon.evans@worc.ac.uk

The other partners on the project were:

 

CHOICE

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Care Home Organisations Implementing Cultures for Excellence (CHOICE)

The CHOICE project was funded by the Department of Health and Comic Relief, and was the final project of the UK-wide PANICOA (Prevention of Abuse and Neglect in the Institutional Care Of Older Adults) programme. The aim of CHOICE was to examine the links between organisational cultures and the care experiences of older people living in residential and nursing care.

ADS worked in partnership with the University of East Anglia, University of Stirling and Cardiff University to carry out 12 in-depth case studies of care homes across the UK. Positive and negative care experiences of older people in long-term care were analysed in relation to the contexts and cultures in which they occurred. The case studies used observations, interviews and documentary collection to analyse the individual circumstances and organisational cultures, contexts and practices most likely to encourage or inhibit the provision of high-quality care. The starting point of each case study was an in-depth observation over a 2-day period using the PIECE-dem framework, which was developed by ADS in an earlier PANICOA research programme.

 

A copy of the final project report can be found here. The findings of this project showed 7 elements pf positive care cultures that made a difference to residents quality of life. These findings are integrated into all of our education and consultancy work and are discussed in detail within the latest edition of  Person-Centred Dementia Care: 2nd Edition: Making Services Better with the VIPS Framework by Dawn Brooker and Isabelle Latham - copies of which can be ordered here at books and resources.

The findings of this project are also discussed in the following publication:

  • Killett, A., Bowes, A., Brooker, D., Burns, D., Kelly, F., La Fontaine, J., Latham, I., O’Neill, M., Poland, F. and Wilson, M.  (2014) “Digging deep: how organisational culture affects care home residents' experiences”Ageing and Society 36 (1)

 

If you would like further information please contact Isabelle Latham:

i.latham@worc.ac.uk 
tel: 01905 542326

PIECE-dem 

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How can I tell you what's going on here?

PIECE-dem: an observational framework focussing on the perspective of residents with advanced dementia. PIECE-dem is an acronym for:

 

PIECE-dem

 

PIECE-dem was developed by ADS as part of the PANIOCA (Prevention of Abuse and Neglect in the Institutional Care of Older Adults) programme. PANICOA is a joint-funded research initiative between the Department of Health and Comic Relief which is designed to enhance the dignity of older people in institutional settings. PIECE-dem is an observational process that illuminates the experience of those people with advanced dementia and high levels of need, who are most vulnerable in long-term care settings.

For a brief overview of the PIECE-dem process, please see our project summary.

PIECE-dem was used in the final PANICOA project, CHOICE (Care Home Organisations Implementing Cultures of Excellence). ADS are developing PIECE-dem further so that it can be used by practitioners to assist them in assessing the experience of their most vulnerable residents. This will take the form of an instruction manual and accompanying training course. 

Howbury Evaluation Report

 

The full report can be found here.

 

The support and education needs of people with dementia and family carers  

Coventry University Faculty of Health and Life Sciences in collaboration with ADS were commissioned by NHS Coventry to explore the support and education needs of people with dementia and their carers within the Coventry and Warwickshire area. The identification, development and provision of appropriate, accessible and current information (and education) and support networks/structures will lead to empowering individuals to make effective and informed care and support choices along the spectrum of the dementia care pathway.

The intention was to identify the information and communication needs of people with dementia and their carers, then co-create innovative materials that are accessible, appropriate and relevant to the needs of these people, taking account of ethnic diversity. ADS contributed to this study by carrying out a scoping of the literature concerning interventions for people living with dementia and their family members/supporters in a care-giving role.

ADS also worked collaboratively with people living with dementia, family members and supporters to develop a personal information record.

This project was completed in December 2010.

Workforce development for Dementia 

 

Full details can be found here 

Dementia Advisers Worcestershire 

Worcestershire PCT, ADS, the Alzheimer’s Society and Health and Care NHS Trust were successful in their bid to host one of the National Demonstrator sites for the Dementia Advisers. Two advisers were appointed to work alongside the Worcestershire Early Intervention Dementia Service, as well as receiving referrals from Community Mental Health Trusts, the Alzheimer’s Society and self referrals. ADS were commissioned by Worcestershire County Council and NHS Worcestershire to evaluate the work of the Dementia Advisers involved in the Worcestershire Demonstrator Site. This evaluation study sought to deliver a robust assessment of the impact, experience and effectiveness of the work of the Dementia Adviser, as well as determining the skills, facilitators and barriers to the success of the role.

A multi-method approach was utilised which involved seeking the perspectives of the Dementia Advisers themselves, people who use their service and those who inform the development of the service or are influenced by their work. In addition, the perspectives and experience of a smaller group of people who had not received a Dementia Adviser service were sought to gain some insight into possible differences between their experiences and those who have received a service.

The Dementia Adviser Service has since been expanded to cover the whole of Worcestershire.

End of life Dementia Care

NHS West Midlands commissioned ADS to carry out a scoping project of dementia and end of life care in the context of the West Midlands Darzi Dementia Pathway. The aim of this exercise was to scope the education and training resources available to the West Midlands and to translate the findings of this into principles for practice.

This project was completed in June 2011 and the reports are available to download (see documents to the right).

Acute Hospital Care

Research projects

The Association for Dementia Studies has been involved in a number of research projects relating to acute hospitals, including:

  • RCN dementia development programme
  • Excellent Care in a Dementia Friendly Acute Hospital - New Cross Hospital, Wolverhampton

Education and Training

See more information at Education and Training

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Excellent Care in a Dementia Friendly Acute Hospital - South Central 

ADS has delivered a development programme for leadership and expertise in dementia within seven Acute Trust organizations on behalf of NHS South of England (Central) in partnership with the Health and Social Care Partnership. The aim of the programme was to develop expertise and leadership within the Acute settings via Dementia Champions, and a sustainable area-wide Dementia Champion’s network.

Early Interventions in Dementia

The importance of early diagnosis and intervention in dementia has been identified as a priority by the National Dementia Strategy and by the Darzi pathway for dementia within the West Midlands region. There is clear evidence that early diagnosis and intervention improves outcomes for people with dementia, their families and their carers, delays institutionalisation and reduces acute hospital admission. By intervening early in the illness and before cognitive deficits affect mental capacity, early diagnosis and intervention aims to maximise choice and autonomy, helping the person and their family adapt and make plans for the future.

Early Intervention Dementia Service, Worcestershire

The Association for Dementia Studies (ADS) has been closely involved with the Early Intervention Dementia Service within Worcestershire, both in terms of their education and evaluation. More information about this service can be found here. The service was recently awarded a £35,000 prize in the NHS Innovation Challenge Prize for Dementia.

Facilitation of Dementia Forums within Worcestershire and Herefordshire

ADS collaborated with the Alzheimer’s Society in Worcestershire to hold the first Dementia Forum, exploring the views of people living with dementia and their families on a range of issues. Reports on these forums can be found in the 'Documents' section of this page.

EU Joint Action on Alzheimer's Initiative (ALCOVE) Project

The EU Joint Action on Alzheimer’s initiative (ALCOVE) was launched in 2011 in an effort to step up cooperation and support to improve prevention, diagnosis, treatment and care across European Member States. ALCOVE was a two-year project addressing four core areas: 

  • How to improve data for better knowledge about dementia prevalence; 
  • How to improve access to dementia diagnosis as early as possible; 
  • How to improve care for people living with dementia and particularly those with behavioural disorders; 
  • How to improve the rights of people with dementia, particularly with respect to advance declarations of will.

 

Dementia Advisers Worcestershire

ADS were commissioned by Worcestershire County Council and NHS Worcestershire to evaluate the work of the Dementia Advisers involved in the Worcestershire Demonstrator Site. This evaluation study sought to deliver a robust assessment of the impact, experience and effectiveness of the work of the Dementia Adviser, as well as determining the skills, facilitators and barriers to the success of the role. 

Dementia Workforce Competencies

This project was funded by the West Midlands Strategic Health Authority and sought to support the implementation of the West Midlands Darzi Pathway on Dementia. ADS collaborated with Staffordshire University, Centre for Ageing and Mental Health on the development of a job description, competencies and person specification for two new roles for dementia services: Primary Care Liaison Role and Dementia Care Pathway Coordinator. 


For further information concerning our work around early interventions please contact:

Dawn Brooker, d.brooker@worc.ac.uk