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Care Home Action Researcher-in-residence Model (CHARM)

The Association for Dementia Studies was awarded funding by the Alzheimer’s Society and Dunhill Medical Trust in October 2019. CHARM (Care Home Action Researcher-in-residence Model) was a 12-month project which investigated whether having a ‘researcher-in-residence’ helps care homes to become more research aware and active. The study evaluated the experiences of staff, residents and family carers who were involved in the CHARM project and whether they thought the approach worked.

The project supported collaborative research between care homes and researchers. Researchers from ADS spent time within participating care homes, supporting staff, residents and family carers to design and implement their own unique and meaningful research projects. The project aimed to provide care homes with practical and accessible tools to conduct further research in the future. 

You can find out more about CHARM , including access to blogs about the research activities, the , and a copy of the  and other . If you have used the CHARM manual, we would also encourage you to provide some feedback via this  to help us understand how it is making a difference in practice.

For more information please contact us at dementia@worc.ac.uk

National Resource Centre for Carers of People with Dementia (NRCC)

Dementia Carers Count were formerly known as the Royal Surgical Aid Society. They have a rich history dating back to 1862 of providing support to people in need; firstly in the form of surgical aids and then more recently in the form of care homes. In 2018, they took a decision to support the needs of people caring for someone with dementia. Creating a Dementia Carers Centre is at the heart of their vision along with offering events and expert-led dementia carer courses.

Dementia Carers Count have a strong collaborative partnership with the Association for Dementia Studies, with a shared vision and shared ethos. Having completed a number of projects with the Charity, we worked together to evaluate the pilot delivery of their dementia carer support courses. The three day residential courses provided an opportunity for carers to learn more about dementia and their caring role. 

To find out more about the work of Dementia Carers Count, please visit their 

Designing for Everyone: An environmental assessment toolkit for primary care premises

The Designing for Everyone environmental assessment toolkit has been developed to help GP practices, where the majority of NHS patient contacts take place, improve their buildings and the physical environment for people with learning disabilities, autism and cognitive impairment. It’s believed to be the first integrated resource of its kind to focus specifically on design principles to support people living with dementia, neurodiversity and conditions like anxiety. 

The Association for Dementia Studies was commissioned to develop the toolkit by primary care building specialists Assura plc. It draws on research into best practice design for people living with dementia, neurodiversity and conditions like anxiety and earlier studies with Assura by the national charities  and the . It will form part of Dimensions’ suite of training resources for general practice in its  campaign.  

The suite of tools, which includes easy read versions, is available free to download via the .

Sustainable Community Interventions for People Living with Dementia (SCI-Dem) 

The Association for Dementia Studies was awarded funding from the for this project, which ran from December 2018 to December 2020. SCI-Dem was a realist review, that aimed to gather together data on the cause-and-effect factors involved in keeping community-based groups and activities for people affected by dementia going long-term – in a climate where such groups and activities often lack any formal support and are often forced to stop after only a short run.

What makes a community intervention for people affected by dementia sustainable: in what circumstances and why?

In the context of this project the word ‘community’ was taken to mean people living at home or in housing schemes, as opposed to those in care-homes or hospitals. ‘Interventions’ referred to those activities which:

• Are seen to be of benefit to the quality of life of people with dementia and family/informal carers – beyond simple sign-posting and information-giving, and beyond occasional respite care
• Occur on a regular, ongoing basis, usually for at least half a day or more per week
• Are place-based, i.e. bringing people together physically, somewhere other than at home
• Are targeted towards, and attractive to, people with dementia and those that support them

‘Sustainable’ interventions were considered to be those that had been in continuous existence for two years or more.

Background

There are currently significant gaps and inconsistencies in the support on offer to help people adjust, connect with others, access services and continue to live well, following a diagnosis of dementia. Community-based groups or activities can be a key form of support. However, these often struggle to keep going long-term once they have started.

SCI-Dem (Sustainable Community Interventions for people affected by Dementia) has gathered together information about the common problems that face regularly-meeting groups in keeping going. This review primarily aims to share strategies and good practices for those running a community group or activity, but our data has also revealed information that might be useful and informative to those commissioning services or shaping policy.

Results

Data was gathered and put together from dozens of sources of all types: research studies and papers, evaluation reports, magazine articles, info guides and how-to booklets, conference talks, even videos and artistic output from some groups. A theoretical model (programme theory) was then constructed encompassing dozens of identified cause-and-effect factors in the form of statements about how different contexts (background circumstances) were likely to trigger different mechanisms (processes and responses in people and organizations) to produce different sustainability-influencing outcomes.

Key factors were grouped under the categories of Getting and Keeping Members; Getting and Keeping Staff and Volunteers; Getting and Keeping Support and Organisations; and Getting and Keeping Funding/Income. The theory produced from the SCI-Dem review is being used to inform, and will be tested by, the current Get Real with Meeting Centres realist evaluation.

Publications

We have produced three booklets aimed at different audiences that outline what was found in the SCI-Dem review, which can be downloaded here:

A published protocol for the SCI-Dem review .

A main results paper for the SCI-Dem project .

SCI-Dem project blog

A regular blog about how the review was carried out was kept for the duration of the project and . (Note: This blog has now been extended to include the new Get Real with Meeting Centres project that SCI-Dem fed into, so latest posts relate to that).

For more information please contact: dementia@worc.ac.uk

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 ³ÉÈËBÕ¾ 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.

Wear to Care: A person-centred exploratory study of care staff clothing in care homes for people living with dementia

This project was a collaboration with Care UK to conduct an exploratory study into the attitudes of residents, relatives and staff concerning the wearing of uniforms by care staff in care homes. There is currently very little research evidence about uniforms in UK care homes, and opinions tend to be divided. For some people, uniforms create an ‘us & them’ barrier between staff and residents, and wearing normal clothing creates a more friendly atmosphere while reducing the power imbalance. For others, uniforms provide a sense of professionalism and reassurance for staff, residents and relatives alike, and make it easier to identify members of staff.

Three main activities were undertaken during the study. Firstly a literature review was conducted, to explore what is already known about uniforms in care homes. Secondly, surveys were carried out with staff, relatives and visitors in two participating Care UK care homes. These captured the views on three clothing options: traditional nursing style uniforms; polo shirts; and appropriate ‘own clothes’. The surveys also included three different badge designs. Feedback was obtained to find out which badge design was easiest to read. In addition to the survey, table top activities were carried out by members of staff with residents to explore obtain their views on staff uniform and the three badge options.

For more information about the findings of this project please contact us at dementia@worc.ac.uk

Creative Ageing Programme

Concerned that arts projects need to be sustainable,  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 us at dementia@worc.ac.uk

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.

The Association for Dementia Studies was awarded 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.

• 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:

• Guidance for Care Homes
• Guidance for Namaste Care Workers
• A  about Namaste Care
• The full version of the 

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

• Bubbles
• Colours

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

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 .

For further information about this project please contact dementia@worc.ac.uk

ECHO - The Provision of Social Care in Extra Care Housing

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. 

The ECHO project is a collaboration between the School for Policy Studies at the University of Bristol, the Association for Dementia Studies at the ³ÉÈËBÕ¾, 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.

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, ‘’, documents the key objective of the ECHO project, to gain residents' first-hand perspective on living within their extra care scheme. 

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

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 ³ÉÈËBÕ¾.

 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 here: HDRC green Dementia care. 

Courtyard Theatre - Making of Me

 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. 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. 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  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.

For more information about Meeting Centres, please see this page.

Refreshing the Admiral Nurse Competency Framework 

 

The Association for Dementia Studies worked with  to refresh their Admiral Nurse Competency Framework. The Framework 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.

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

ABMU Training Evaluation 

The Association for Dementia Studies were commissioned by the Abertawe Bro Morgannwg University (ABMU) Health Board in Wales to evaluate their Dementia Training Programme and 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 

 The evaluation report was completed in 2016 and provided a detailed analysis of the current training programme, along with recommendations for any relevant changes. A project summary is currently available.

 

Evaluation of Keys to Care Resource

 

The Residents and Relatives Association (now part of ) commissioned the Association for Dementia Studies to evaluate the use and impact of its . 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 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 informed the focus of the project. During the project, Lenni was the sound practitioner and ADS evaluated the impact of the project and the effects of therapeutic/healing sound.

My Musical Memories 

The Alzheimer's Society's ‘My Musical Memories Reminiscence Programme’ (MMMRP) aimed to use music to create the opportunity for people with dementia, through facilitation and support, to recall their past history. The MMMRP consisted of a series of small group sessions for people with dementia and was loosely based on the theme of the BBC radio show, ‘Desert Island Discs’. Each session had a separate theme such as ‘work’ or ‘weddings’ and the music used was tailored to the preferences of the participants.

The Association for Dementia Studies 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.

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.

A copy of the programme report can be viewed and downloaded here. A 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 saw nine NHS trusts develop innovative ways to improve dementia care in hospitals. 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.

 

Read the summary document here.

Anchor iPad evaluation

The Association for Dementia Studies at the ³ÉÈËBÕ¾ 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 introduced tablets to 63 of its care homes across England. Findings demonstrated the benefits of introducing and using touchscreen technology in care settings, and a good practice guide was published to share the 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, 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

 

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. 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 

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.

³ÉÈËBÕ¾ us at dementia@worc.ac.uk

EU Alcove Project

 

 

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

 

 

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.

 

In December 2011 ADS was invited to tender by the Department of Health to lead a Work Package 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. 

 

 

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

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.

 

The findings from the project can be viewed in this project summary.

CHOICE

 

Care Home Organisations Implementing Cultures for Excellence (CHOICE)

The CHOICE project was funded by the  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 ,and 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)

PIECE-dem 

 

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

 

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  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). The final report is available here, and a copy of the PIECE-dem manual can be found here. 

Howbury Evaluation Report

 The full report from this project 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 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 of this work 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.

Acute Hospital Care

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

ADS has also 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 was identified as a priority by the National Dementia Strategy and by the Darzi pathway for dementia within the West Midlands region. There was 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.

• The Association for Dementia Studies (ADS) was closely involved with the Early Intervention Dementia Service within Worcestershire, both in terms of their education and evaluation.
• 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.
• 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. More information can be found in the separate section on ALCOVE.  
• 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. 
• The Dementia Workforce Competencies 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.