Dementia in Prison
Title: Improving the health and well-being of older people with cognitive frailty and dementia in prison
Funders: Dunhill Medical Trust
Status: Seeking Ethical Approval
Start/end: – 28/3/21 TBC
Research Team: – Dr Rhoda MacRae, Prof Debbie Tolson, Dr Kirstin Anderson and Dr James Taylor
Overview: The study aim is to identify and develop new effective ways to improve the health and well-being of the increasing numbers of older prisoners living with dementia and cognitive frailty. This mixed methods study will investigate current care and lived experience of dementia in prison, and co-design research informed healthcare pathways.
Project Title: Development and Refinement of the ASCPP Carers’ Academy a co-operative research and service development initiative.
Funders: Alzheimer Scotland
Start Date: Feb 2020 for three years
Project Team: Susan Holland (Alzheimer Scotland Dementia Nurse Consultant, NHS Ayrshire and Arran, Alison Toner (ECR –UWS), Dr Margaret Brown UWS, Dr Rhoda Macrae, Professor Debbie Tolson (UWS)
Synopsis:- The purpose of the ASCPP Carer’s Academy is to provide state of the art practical skills based learning and information that will support and sustain family caring of a relative with dementia. Focussing on:
- Enhancing knowledge and understanding of the effects of dementia.
- Developing practical skills in the fundamentals of care and caring.
- Facilitating opportunities for peer to peer learning.
An important function will include a best practice approach to carer emotional support and follow up before, during and after participation in learning activities. Following on from our previous modelling work and pilot studies, this three year project seeks to create two sustainable ASCPP Carers’ Academy Hubs at the UWS Ayrshire and Lanarkshire Campuses. A mixed method Family Carer led evaluation will permit, evidence based ongoing and continual improvement and refinement of the learning model.
Publications: in Submission.
“Best Educational Initiative” Scotland’s Dementia Awards 2019
“Innovations in Education Award”, Mental Health Nursing Forum Scotland Awards 2019
Dementia Inclusive Singing Network Evaluation
Project title: An evaluation of the Dementia Inclusive Singing Network and the experience of group singing for people living with dementia and family carers.
Researchers: Dr Louise Ritchie, Dr Margaret Brown, Carol Beckwith and Dr Stuart Wood (Independent Health and Music Researcher).
Funders: Life Changes Trust
Date Commenced: April 2019
Overview: The Dementia Inclusive Singing Network was established in 2019 by Luminate to promote and support singing activities for people living with dementia throughout Scotland. The evaluation aims to:
- Understand the impact of dementia inclusive singing for people with dementia and unpaid carers.
- Assess the working of the Dementia Inclusive Singing Network in terms of its ability to raise awareness of dementia and improve access to the arts for people affected by dementia within Scotland.
- Explore the best ways of working for the Network
Using a realistic evaluation methodology, the project will draw on a range of data sources including video footage of choirs and singing activities, project documents and interviews with team members, choir leaders and choir members.
Dementia Champions-Workforce Development
Project title: Development, delivery and evaluation of a training programme to prepare NHS and Social Services Dementia Champions as change agents.
Funders: Scottish Government
Project Status: Dissemination Phase
Project Team: Dr Anna Jack-Waugh, (Alzheimer Scotland Centre for Policy and Practice, UWS), Dr Rhoda MacRae, (Alzheimer Scotland Centre for Policy and Practice, UWS), Dr Margaret Brown, (Alzheimer Scotland Centre for Policy and Practice, UWS), Dr Louise Ritchie, (Alzheimer Scotland Centre for Policy and Practice, UWS), Dr Raymond Duffy, (Alzheimer Scotland Centre for Policy and Practice, UWS) J Oliver Hartley, (School of Health and Life Sciences. UWS), Dr Barbara Sharp, (Alzheimer Scotland), Jenny Henderson, (Alzheimer Scotland Centre for Policy and Practice, UWS)
Overview: In recognition of the often poor experience of people living with dementia in general hospitals and the lack of dementia curricular content of health and social care professionals, the Scottish Government commissioned a National Dementia Champions Programme for qualified health and social care professionals in 2011. Ten cohorts were delivered up to 2019 by a team of dementia specialist from University of the West of Scotland, Alzheimer Scotland, NHS Boards and Scottish Social Services Council. The six-month programme has a blended learning approach, including five face to face study days and three assignments. A description of the programme and ongoing evaluation is in Banks et al. (2014) and Jack-Waugh et al. (2018).
The ongoing research demonstrated that the Dementia Champions programme significantly improves attitudes and knowledge of dementia and increases participants' feelings of self-efficacy in delivering person-centred dementia care. A ProfD study into the experience of being a dementia champion illuminated the long-term negative impact of knowledge and skills gaps in dementia education and on people living with dementia and health and social care professionals. This study has also led to developing a learner, experience, research and practice centred approach to dementia workforce education called SCOTIA, with people with dementia at the centre.
Banks, P., Waugh, A., Henderson, J., Sharp, B., Brown, M., Oliver, J. & Marland, G. 2014. Enriching the care of patients with dementia in acute settings? The Dementia Champions Programme in Scotland. Dementia (London) [Online], 13. Available: http://dx.doi.org/10.1177/1471301213485084
Brown, M., Waugh, A., Sharp, B., Duffy, R. & Macrae, R. 2018. What are dementia champions and why do we need them? Dementia [Online], 17. Available: http://journals.sagepub.com/doi/abs/10.1177/1471301217743413
Jack-Waugh, A., Ritchie, L. & Macrae, R. 2018. Assessing the educational impact of the dementia champions programme in Scotland: Implications for evaluating professional dementia education. Nurse Education Today [Online]. Available: http://www.sciencedirect.com/science/article/pii/S0260691718306828
Waugh, A., Marland, G., Henderson, J., Robertson, J. & Wilson, A. 2011. Improving the care of people with dementia in hospital. Nursing Standard, 25, 44-49.
Multispecies Dementia Network
Project title: Multispecies and Dementia Research Network
Researchers: Dr Nick Jenkins, Dr Anna Jack-Waugh and Dr Louise Ritchie
Funders: Wellcome Trust
Date Commenced: October 2019
Overview: This project aims to set up and establish the Multispecies Dementia Network. Drawing on current research from across the humanities, social sciences and biological sciences, the network will chart the contours of an alternative (multi-species) perspective, in which relations between human and non-human bodies becomes the primary lens for understanding dementia and its effects. The Network, 60 members representing 16 disciplines internationally. As we continue to develop the network, we have launched a monthly newsletter, blog series, and are developing best practice guidance for multispecies dementia care.
Publications: In submission
Handedness and vitamin D as predictors of dementia
Researchers: Dr Bianca Hatin, Dr Hannah Lithgow, Dr Andisheh Bakhshi, Dr Nicola Douglas-Smith, Dr Rhoda MacRae
Project title: - Can handedness and Vitamin D levels predict the development of dementia?
Project status: – in progress
Funders: – UWS Crucible fund
Start/end: – January-June 2021
Overview: The main aim of our project is to establish for the first time whether left-handedness, together with levels of vitamin D, can predict the onset of dementia. Research has suggested a link between left handedness and early early-onset Alzheimer’s Disease (Ryan et al., 2019), and moreover vitamin D status has been associated with the onset of dementia (Annweiler et al., 2013). The proposed study will use the UK BioBank database and English Longitudinal Study of Ageing (ELSA) database to undertake a quantitative secondary analysis of key variables and apply statistical methods to estimate the odds ratios of the outcome. Results will show whether lower Vitamin D levels and left handedness cumulatively increase the risk of developing dementia, particularly early-onset AD.
Rapid Covid; Care Home Study
Project Title: Care homes, social distancing and behavioural changes – an assessment of the psychosocial impact of Coronavirus on families with relatives in care homes in Scotland.
Research Team: Dr G. Palattiyil, (UoE), Dr S. Jain (UoE), Dr J. Hockley (UoE), Prof L. Jamieson (UoE), Prof L. McKie (UoE); Dr D. Sidhva (UWS), Prof D. Tolson (UWS), Dr N. Quinn (UoS) and Prof T. Hafford-Letchfield, (UoS); R. Iversholt (IRISS). Research Fellows Dr S Swift (UWS), Dr B Mason (UoE).
Funded by Chief Scientist Office Scotland: Rapid COVID Study £150,000
Duration: 6 months
Synopsis: Between May and October 2020 we conducted 36 in-depth interviews with family carers to understand the impact on them being prevented from visiting their relatives in care homes. Our café style interviews involved five sessions with staff drawn from four separate care homes and explored creative practices used to connect residents with family carers. To help understand measures taken to reduce the impact on family members, we undertook 19 interviews with key stakeholders from the health and social care sector. Finally, using the General Health Questionnaire (GHQ 12), we conducted an online survey of people who had a loved one in a care home, which yielded 444 responses, representing 31 of Scotland’s 32 local authorities.
Our findings reveal the disproportionately high impact on care home communities of the pandemic, and the consequences of policies that give primacy to NHS services over long-term care services. The high level of emotional distress reported by family carers sits uncomfortably within a service leadership structure that is over reliant on social media reporting and tolerant of serious inequalities, harms and system failures that were only too evident to staff and family members.
Publications: in Submission
Listen to Iriss.fm’s podcast on How 'essential visitor' status can support families: First findings of a collaborative research project. https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?id=206393108#episodeGuid=55334c41-3dfe-45d2-8592-5080a792f6cb
KINNECTIONS ‘DEMENTIA: CARE HOME COMMUNITIES’
Funders: Life Changes Trust
Project Status: Dissemination Phase
Research Team: Dr Anna Jack-Waugh, (Alzheimer Scotland Centre for Policy and Practice, UWS), Dr Edel Roddy (UWS), Dr Annette Coburn (School of Education and Social Sciences, UWS), Alison Nugent,(Expert by Experience), Val Allen, (Integration Lead, Scottish Care), Charlie Allan, (Contracts and Commissioning Office, East Ayrshire Health and Social Care Partnership).
Overview: Kinections is a UWS research project affiliated with My Home Life working with care homes across East Ayrshire. The Kinections project started in October 2018 and ends in February 2021, the project is in its final dissemination phase.
The aims of the project
- Find out what is important to people in care homes living with dementia and those who support them.
- Co-create a picture of what community in care homes looks like at its best.
- Work together to enhance everyday ways in which people’s experiences of community can be strengthened in care homes.
- Engage with people and groups from local communities to strengthen ways in which those who live and work in care homes are valued and cherished
Appreciative Inquiry was the methodology used which focuses on:
- Using a Strengths-based approach
- Tapping into how visuals and language can evoke new insights.
The project co-created 20 actions, processes and events, all are summarised in the Kinections Chronicles and Kinections website. A series of resources for developing community in and around care homes designed for use across the care home sector and more broadly in all areas of health and social care are here Kinections Resources, Kinections on Youtube and here Kinections Key Outputs.
Listen to Iriss.fm podcast on Kinections: what community means for care homes https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?id=206393108#episodeGuid=1538c9c5-03f4-47be-a746-7955e4d6c318
Dementia and Employment
Research Team: Dr Louise Ritchie (UWS), Professor Debbie Tolson (UWS), Dr Valerie Egdell (Northumbria University), Prof Jill Stavert (Edinburgh Napier University) Emeritus Professor Mike Danson (Heriot-Watt University)
Programme title: Dementia and employment
Funders: Alzheimer’s Society, Carnegie Trust for the Universities of Scotland
Overview: Approximately 40,000 people in the UK are diagnosed with dementia whilst of working age, but little attention is afforded to the impact this has on employment. The aim of this developing programme of research is to understand the experience of people with dementia who are diagnosed whilst still in employment and the support required for employees, employers and families.
Study 1: Dementia in the workplace: the potential for continued employment post diagnosis was seminal case study research on dementia and employment, carried out between 2013 - 2015 and funded by the Alzheimer’s Society. This research was the first study to explore the experiences of people with dementia who are still employed and highlighted that people with dementia can continue to work post diagnosis, although support to continue employment is complex and many do not get the support required, with many losing employment pre or at the point of diagnosis as a result.
Study 2: Employers’ responses to dementia in the workplace was funded by Carnegie Trust and led by Edinburgh Napier University with UWS collaboration. This mixed method survey and interviews with employers highlighted gaps in knowledge and understanding of dementia and its effects in the workplace.
Study 3: Dementia, Work and Employability was a secondary analysis of data sets collected across the two previous projects, providing a theoretical perspective on dementia in the workplace, using the lens of Sen’s Capability Approach. The findings of this study outline the range of personal resources, supports and environments required to enable positive employment-related experiences and practices for people with dementia.
Egdell, V., Cook, M., Stavert, J., Ritchie, L., Tolson, D., & Danson, M. (2019). Dementia in the workplace: are employers supporting employees living with dementia?. Aging & Mental Health, 1-8.
Ritchie, L., Banks, P., Danson, M., Tolson, D., & Borrowman, F. (2015). Dementia in the workplace: a review. Journal of Public Mental Health.
Ritchie, L., Tolson, D., Danson M. (2017) Dementia in the workplace case study research: understanding the experiences of individuals, colleagues, managers and family. Ageing and Society. https://doi.org/10.1017/S0144686X17000563
Ritchie, L., Egdell, V., Danson, M., Cook, M., Stavert, J. and Tolson, D. (2020) Dementia, work and employability: Using the Capability Approach to understand the employability potential for people living with dementia. Work, Employment and Society https://doi.org/10.1177/0950017020961929
Advanced Dementia Related Hardships – India
Project Title: Developing family and community capacity to provide evidence-informed advanced dementia care, and reduce risks of dementia-related elder abandonment and abuse.
Funders: Scottish Funding Council Global Challenges Research Fund 2018-19
Research Team: Professor D Tolson1 , Professor E Sanatombi Devi2, Dr L Ritchie1, Dr A Jack-Waugh1, Dr V Binil2, J Henry2, CS Martis2, Dr A George2.
1The University of the West of Scotland, UK.
2Manipal College of Nursing, Manipal Academy of Higher Education. India.
Synopsis: There are 4 million people living with dementia in India and an urgent need to establish dementia education and care aligned to the Global Sustainable Development Goals. Advanced dementia within India is a hidden problem, which places individuals and their sometimes-young carers at high risk of poverty and other inequalities. There is an immediate need to develop practical and theoretical understanding among practitioners, policy decision-makers and the public about advanced dementia alongside an understanding of advanced dementia related abuse and abandonment. This mixed method project has begun to explore the experiences and vulnerabilities of people affected by advanced dementia, to establish the principles to inform culturally sensitive dementia education linked to care.
Methods used to collect data included:-
- review of research literature
- desk based research to map local services and access public health data
- focus groups to explore the experience of family care giving
- educational gap analysis
- community co-design conversations and user acceptability questionnaires exploring relevance and cultural sensitivity issues of an existing research based training resource UWS-Class in the Bag-Dementia.
Ritchie, L., Jack-Waugh, A., Devi, E. S., Binil, V., George, A., Henry, J., ... & Tolson, D. (2020). Understanding family carer experiences of advanced dementia caregiving in India: towards a vision for integrated practice. Journal of Integrated Care. https://doi.org/10.1108/ JICA-02-2020-0006
Project title: An Evaluation of the Social Impact of a Pilot Dementia-Friendly Walking football Programme
Research Team: Dr Eilidh Macrae and Dr Rhoda MacRae, UWS
Funders: RS Macdonald
Start/End: 1/2/19 – 1/2/20
Overview: Dementia friendly walking football (DFWF) is an increasingly popular way to encourage men living with dementia to engage in a form of physical activity (PA) traditionally attractive to them, yet no published empirical evidence exists regarding its social impact. This project aimed to evaluate the social impact of a pilot, monthly DFWF programme on the lives of men living with dementia and the people who care for them. Mixed qualitative methods, including semi-structured interviews and observation
MacRae, R., Macrae, E and Carlin, L (2020) Modifying walking football for people living with dementia: lessons for best practice. Sport in Society. Accepted 15/09/20 DOI: 10.1080/17430437.2020.1825383
MacRae, R., Macrae, E., and Carlin, L (2020). The social impact of participating in sport for people living with dementia. Alzheimer Europe-virtual conference. 20-22/10/2020
MacRae, R., Macrae, E., and Carlin, L (2020). The social impact of participating in football for people living with dementia. Thirteenth Annual Summit of Rural and Remote Dementia Care, Canada - virtual conference. 10/11/20
Dementia Palliare: Advanced Dementia Care
Project Title: Interprofessional experiential learning (IPE) solutions: equipping the qualified dementia workforce to champion evidence informed improvement to advanced dementia care and family caring (Palliare).
Funders: Erasmus+ 2014 Key Action 2 (KA2), Strategic Partnerships
Project Team: Professor Debbie Tolson 1, Professor Iva Holmerova2 ,Dr Rhoda Macrae1, Anna Waugh1 Dr Simona Hvalič- Touzery3, Professor Wilson de Abreu4, Professor Manuel Lillo Crespo5 Anne Merta6, Professor Elizabeth Hanson7
- Alzheimer Scotland Centre for Policy and Practice. University of the West of Scotland UK
- Centre of Expertise in Longevity and long Term Care, Charles University, Prague
- Angela Boškin Faculty of Health Care, Jesenice, Slovenia
- Porto School of Nursing, Porto, Portugal
- University of Alicante, Spain
- Turku University of Applied Sciences Ltd TUAS, Finland
- Swedish Family Care Competence Centre, Linnaeus University, Sweden
Synopsis: The Palliare Project was completed between 2014-2017 by a partnership of seven European countries (Czech Republic, Finland, Portugal, Scotland, Slovenia, Spain and Sweden). The aim of the dementia Palliare project was to create an inspirational experiential interprofessional learning solution to equip the European qualified dementia workforce to lead and champion practice reform. This required new knowledge to generate an experienced based understanding of advanced dementia and best practice for care delivered in partnership with family carers, and to use this knowledge to create state of the art advanced dementia education. Palliare, means to cloak in support, the term Dementia Palliare was chosen as a new concept to describe dementia specific palliation. Building the evidence for Dementia Palliare and Palliare education involved 11 work streams and included the following research activities:-
- Literature Review
- Policy Analysis
- In-depth case studies
- Educational Gap Analysis
- Experiential learning pedagogical review
Hanson, E., Hellstrom, A., Sandvide, A., Jackson, GA., Macrae, R., Waugh, A. Abreu, W. & Tolson, D. (2016). The extended palliative phase of dementia – an integrative literature review. Dementia DOI: 10:1177/1471301216659797.
Tolson, D., Fleming, A., Hanson, E., Abreu, W., Lillo Crespo, M., Macrae, R., Jackson, G., Hvalic-Touzery, Routasola, P. & Holmerova, I. (2016) Achieving Prudent Dementia Care (Palliare): An International Policy and Practice Imperative. International Journal of Integrated Care, 16 (4), 18, 1–11, DOI: http://dx.doi.org/10.5334/ijic.2497.
Lilo-Crespo, M., Riquelme Golindo, J., Macrae, R., Abreu, W., Hanson, E., Holmerova, I., Cabaneor, M,J., Ferrer, R., Tolson, D. (2018) Experiences fo advanced dementia care in seven European countries: implications for educating the workforce. Global Health Action 11(1):1478686.
Hvalič-Touzery, S., BrigitaSkela-Savič, B., Macrae, R., Jack-Waugh, A., Tolson, D., Hellström, A., de Abreu, W., Pesjak, K. (2018) The provision of accredited higher education on dementia in six European countries: An exploratory study. Nurse Education Today 60, 161-169 https://doi.org/10.1016/j.nedt.2017.10.010
Tolson D (2020) Transforming advanced dementia: the Palliare Best Practice Statement, an interprofessional learning framework and tool for improvement .Nursing Standard. 35, 10, 56-59. doi: 10.7748/ns.35.10.56.s33.
Project Title: The contribution of dementia dogs to living well with dementia: a realistic evaluation.
Researchers: Dr Louise Ritchie, Dr Nick Jenkins, Dr Samuel Quinn, Dr Barbara Sharp and Professor Debbie Tolson.
Funders: Alzheimer Scotland
Date Completed: 2016
Overview: The Dementia Dog Project was developed through collaboration with Glasgow School of Art, Alzheimer Scotland, Dogs for the Disabled, and Guide Dogs UK in 2013. The project aims to train dogs to support people to live well with dementia. This study aimed to understand the contribution of Dementia Dogs to the lives of people with dementia and family caring. A realistic evaluation methodology was used to conduct a secondary analysis of project documents and artefacts alongside interviews with the project team. The research found that having a Dementia Dog can be beneficial to people living with dementia and their families, however this is dependent on the context of the situation and the promotion of the human-animal bond.
Ritchie, L., Quinn, S., Tolson, D., Jenkins, N., & Sharp, B. (2019). Exposing the mechanisms underlying successful animal-assisted interventions for people with dementia: A realistic evaluation of the Dementia Dog Project. Dementia, 1471301219864505.
Jenkins, N., Ritchie, L., & Quinn, S. (2020). From reflection to diffraction: exploring the use of vignettes within post-humanist and multi-species research. Qualitative Research, 1468794120920258.
Food for Thought
Project Title: Enhancing the dignity of the person with advanced dementia using innovative methods to facilitate eating and drinking.
Research Team: Dr Margaret Brown (UWS), Prof Pauline Banks (UWS), Hazel McWhinnie (UWS), Janice McAllister (Erskine Care Home), Mrs Valerie Logan (Erskine Care Home) , Mrs Karen Heron (Erskine Care Home), and Mr John Booth (Erskine Care Home)
Start Date: 2013-2014
Funder: Burdett Trust for Nursing and Queen’s Nursing Institute for Scotland
To enhance the dignity of the person with advanced dementia using innovative methods to facilitate eating and drinking.
- To enhance dignity, quality of experience and improve dietary intake for the person with advanced dementia.
- develop nurse-led innovative ways of identifying food and drink preferences.
- develop a sustainable guide to enhance quality and choice for the person with advanced dementia
A nurse-led partnership approach included residents, family carers, speech and language, catering, and academic staff. Intensive education involving staff and family, led to an intervention period of 12 weeks where a sensory framework supported innovative ways of improving the experience of eating and drinking for the person with advanced dementia. The outcomes were an improved dietary intake, eating pleasure, independence and weight maintenance for the people with advanced dementia; empowered staff and family knowledge and innovation in supporting eating and drinking with improved collaboration among staff and families. This project underpins the framework to support eating and drinking for residents at Erskine. The learning has formed educational materials used in pre-registration and post-graduate learning at UWS and for family carers through the ASCPP Carers’ Academy.
Published report and film
Burdett Trust for Nursing and Queen’s Nursing Institute for Scotland (2014) Food for Thought online at https://www.qnis.org.uk/project/food-for-thought-enhancing-dietary-preferences-for-the-person-with-advanced-dementia/
Food for Thought 26/03/14 Queen’s Nursing Institute for Scotland Conference, Stirling
Enhancing Dignity in Dementia Care. 02/04/14. The Sixth Scottish Caring & Dementia Congress Edinburgh
Food for Thought 8/04/16 Royal College of Nursing Edinburgh
Dementia education in primary schools
Researchers: Dr Louise Ritchie, Dr Susan Henderson-Bone, Angela Gregory, Dr Nick Jenkins
Project title: Understanding dementia education in primary schools from the perspective of the pupils
Project status: Dissemination
Funders: UWS Crucible Fund 2017
Overview: Using the Award-winning Understanding Dementia: Class in a Bag, this project aimed to explore the experiences of learning about dementia in a primary school setting from the perspectives of the pupils. The project used a participatory video approach, asking the pupils to film their own experiences of the dementia education session in order to understand what stood out to them and how interacting with the materials in the bag informed their understanding of dementia.
Publications: in preparation