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“You, me and the Big D”: Changing attitudes to dementia in Whiteley Village through participatory research

LorraineMcDonagh18 September 2019

In this post, Rachael Frost talks about her experience of conducting a participatory research project. 

Whiteley Village is a retirement community in Surrey for people on low incomes. Dating back to 1917, the village provides housing, support and facilities for nearly 500 older people. Managed by the Whiteley Homes Trust, the village can support those with care needs in assisted living or a care home, but there are no dedicated dementia facilities. Despite this, a number of residents are living there with varying degrees of dementia. Although the village has a strong sense of community and residents can be very supportive towards each other, there is a sense that dementia is still stigmatised like cancer used to be (the old “Big C”) and that as a result, residents don’t receive the support they could from each other.

Enter Pauline, Mary, Peggy and Sue – four village residents who wanted to change this. In partnership with Dr Alison Armstrong from the Whiteley Foundation for Ageing Well and myself, we successfully applied for a British Society of Gerontology Averil Osborn Award for Participatory Research at the end of 2018.

(R-L) Me, Mary, Sue, Pauline, Peggy & Alison

 

The “You, Me and the Big D” project was a small research project designed to see whether Alzheimer’s Society Dementia Awareness Training would have a positive impact upon residents’ attitudes and behaviours to people in the village with dementia. Mary, Peggy, Pauline and Sue collected qualitative and questionnaire data from eight participants before and after the training, with qualitative research training and input throughout from Alison and myself.

So did anything change? Before the training, our participants told us that although they knew how to best support someone with dementia, they had plenty of examples from the village where this hadn’t happened. They felt this was due to lack of knowledge, village life (which could be supportive but judgmental), fear and the fact that different people with dementia had very different symptoms. Participants felt there was a need for more village support and wanted more information, particularly about dealing with aggressive behaviour.

 

“One day they might seem perfectly normal to you and the next day they’re not” (Barbara)

 

After the training, our eight participants felt like they had learnt quite a lot about different types of dementia and its other effects (such as on the senses and on balance), but wished to know a lot more than could be covered in three hours. For a couple of participants, it increased the worry about potentially aggressive behaviour from people with dementia. Some participants also reported issues with the training facilitation in that they would have liked to hear more from the speaker than others in the room.

 

“I’ve learned that there are different types of dementia which I hadn’t really considered and … people who have dementia are at different stages” (Camilla)

 

It was a great project to be involved in, although there were some challenges along the way! There was very little time to actually do the project (we received confirmation of the funding in January and had to present results at the British Society of Gerontology conference in July), particularly for training in qualitative interviewing and analysis, and very little budget. Some of the villagers weren’t receptive to the idea of other villagers doing research – with people saying “who do you think you are?” According to the village researchers, confidentiality was also a challenge in such a closed environment, as was having audio-recorders that were not very older person-friendly!

However, the benefits definitely outweighed these. Alison and I had a great time as the village researchers were so enthusiastic. Peggy, Mary, Sue and Pauline looked forward to our meetings and discussions, enjoyed learning and making a difference to the village and said they felt younger as a result. Mary and Sue came along to British Society of Gerontology 2019 conference and co-presented the project with Alison.

Alison and Mary (L) and Sue (R) presenting at the British Society of Gerontology conference

Of course, this was only a very small project. However, the main positive benefit from the Big D has been its wider impact on the village. Whiteley residents have been encouraged to talk about dementia more and dementia care has moved up the agenda with management. One person with dementia has even been able to move back into the village and live back with their spouse with better support. Further projects are being planned to improve dementia support in the village, so watch this space…

 

Conference dinner selfie!

 

Case management pro lidi žijící s demencí a jejich rodinné příslušníky

NathanDavies11 October 2018

Jane Wilcock & Steve Iliffe , Centre for Ageing Population Studies

For the last few years we have been collaborating with colleagues from the Centre of Expertise in Longevity and Long-term Care, Faculty of Humanities, Charles University in Prague, Czech Republic. The Ministry of Health of the České Republiky tasked us with exploring case management as a complex intervention in people with dementia. A multidisciplinary team with experiences in general practice, sociology, nursing, ethics, social care and psychology led by Iva Holmerová, we set out to explore the current understanding of dementia case management and develop a toolkit for implementation in the Czech Republic, where no such model currently exists.

21st Annual conference Prague Days of Gerontology

In Europe people with dementia syndrome and their carers all too often encounter services that are limited in resources, poorly coordinated, variable in quality and quantity, protocol-driven, inequitable, sometimes stigmatising and are only weakly tailored to individual and family needs. These negative features appear common across Europe, where there is a need to develop new (or reconfigure existing) services for people with dementia and their families so that they experience a smoother journey along the illness trajectory and receive services that are more person-centred, effective and efficient. One strategy for improving the effectiveness of care is to develop programmes that enhance coordination and implementation of care plans.

Through a series of workshops with key stakeholders, literature review and ethnography we modelled case management for dementia which led to a discussion paper in the International journal of Dementia, several Czech monographs, a toolkit of skills for dementia case managers and a guide to good practice in implementing case management.

The National Technical Library Prague

In September I was invited to present a half day workshop on case management for people with dementia at the Gerontological conference in Prague co-hosted by the Czech Alzheimer’s society in the impressive National Technical Library. The workshop was well attended, we had a mix of nurses from care homes and social workers and their managers. English was not widely spoken by the attendees and it was a new experience for me having my words translated into Czech and then the questions and lively discussion translated back to me in English.

The following day I was invited to present on case management at a workshop in the district of Prague 7 where they want to implement case management across all sectors. It was an informal afternoon in a local café and was attended by commissioners, social workers, housing and representatives from the third sector such as the local YMCA and the Salvation Army. Complex caseloads of people who are homeless, those with drug and alcohol problems as well as those with dementia, led to the interest from practitioners. The end of the workshop led to some practical definitions and ways forward for implementation, and was a rewarding process to be involved in.

Marcela Janečková facilitating the practical workshop on case management in Prague 7

As our three year collaboration ends this year we are looking for new ways to continue to work together on this successful collaboration. And I am looking forward to presenting research methodologies to the PhD students at the Prague Centre of Expertise in Longevity and Long-term Care in November.

This study was supported by the research project 15-32942A-P09 AZV of the Ministry of Health České republiky Case management as a complex intervention in patients with dementia

Rules-of-thumb ~ are they the answer to our decision making dilemmas at the end of life for people with dementia?

NathanDavies5 October 2016

Back in 2011 when I started my PhD and was working on a European study which was examining palliative care services for people with dementia, there was a distinct lack of guidance about how end of life care should be delivered. The only real ‘saving grace’ I guess was the Liverpool Care Pathway. This offered some guidance about what should happen towards the end of life. It was meant to incorporate and describe best practice from hospice care, the ‘gold standard’ of end of life care, and allow it to be translated to other settings such as the acute hospital ward. Although, I say saving grace… really, it wasn’t best suited to people with dementia and it only focussed on the last few days of life.

The Liverpool Care Pathway received some shocking criticism, spearheaded mainly by the Daily Mail and ultimately this led to the removal of the pathway by the UK government in 2013. What we saw in the middle of our projects were practitioners losing more and more confidence in providing end of life care generally, let alone for people with dementia.

This led us to think, what can we do to help with practitioners confidence but not develop yet another pathway or guideline? Maybe what we need is something that is short, easy to remember, prompts us to think and leads us to an action. Cue light bulb moment, and we have the idea of developing rules-of-thumb (heuristics). Rules-of-thumb are simple, easy to remember schematic patterns which help with decision making.

heuristics book

 Could we produce something similar to this for practitioners making decisions for people with dementia at the end of life? Well, using a process of continual development and change with families and practitioners, we did. We have produced four rules-of-thumb, covering: eating and swallowing difficulties; agitation and restlessness; reviewing treatment and interventions at the end of life; and providing routine care at the end of life.

The full rules are available on our webpage which you can find here. But to give you a taster our rules consist of flow charts, taking the decision maker, through the thought processes and the individual smaller thoughts and decisions which need to be made about a much larger decision. In the diagram you can see our rule covering agitation and restlessness. The key rule here is to not assume that the dementia is the cause of the agitation/restlessness, but to look for an underlying cause. It also acts as a prompt to the practitioner, getting them to think; what else is going on here? They need to look at the changes that have occurred, thinking not only about the physical causes, but also the environment and the health and wellbeing of the carer. Finally, this rule reassures the practitioner that a cause may not always be found. This is ok!

agitation

We tested these rules at 5 different sites; 2 palliative care teams, a community nursing team, a general practice, and a hospital ward. In September we hosted the end of study symposium to

Nathan Davies introduces the rules-of-thumb

Nathan Davies introduces the rules-of-thumb

present the final versions and hear some feedback from those on the ground who actually used them.

Gillian Green, a community matron, said they were easy to follow providing common sense advice and she had not seen anything quite like it in her 26 years of experience in nursing.

Caroline Ashton on the rules-of-thumb

Caroline Ashton on the rules-of-thumb

 Caroline Ashton, also fed back on her experiences of using the rules-of-thumb on her complex care hospital ward. She told the audience about how a locum registrar (doctor) on the ward was able to pick up the rules-of-thumb to help guide decisions about a patient, despite having very little experience of end of life care. That registrar has taken the rules away with her to use in her clinical practice.

The feedback we had from sites through our evaluation was great, with suggestions for improvement incorporated into a final toolkit of the rules-of-thumb. We are in the process of analysing the final evaluations and will publish these findings in more detail very soon.

So are rules of thumb the answer? I won’t say yes, but I definitely will not say no! Our experiences is that they have been a good way to get practitioners thinking about some of the basic underpinnings of end of life care, making the implicit knowledge that they have explicit. We have provided many of those involved in the study with copies of the final rules-of-thumb for them to not only continue using in practice but also to share within their wider organisations and colleagues. As I sit writing this blog I have opened another email explaining how the rules-of-thumb we have developed are going to be incorporated into end of life training being developed by the Alzheimer’s Society.

For more information on our work or a hard copy of the heuristics please contact Nathan Davies (Nathan.davies.10@ucl.ac.uk) or alternatively download the rules-of-thumb from our website.

This research was supported by funding from Alzheimer’s Society grant number AS-PG-2013-026 and by the Marie Curie Research Programme, grant C52233/A18873.  The views expressed here are those of the authors and not the funders.

Academic Primary Care – Not sinking, nor swimming, but motoring!

NathanDavies14 March 2016

This month Rammya Mathew an Academic Clinical Fellow from the Centre for Ageing Population Studies talks about her first and very impressive first time at the SAPC regional Madingley conference which this year we hosted.madingley

This was my first experience of SAPC, and what a fantastic introduction it was. The conference was jam-packed with inspirational speakers, some of whom have paved the way for academic primary care, and many more who look set to be future leaders within the field. The question posed to us by the chair, Professor Elizabeth Murray, was ‘InnovatioEM madingleyn in a sea of change – will academic primary care sink or swim?’. However, the overwhelming attendance and the enthusiasm among delegates spoke volumes in itself, and provided a sound evidence base for the conclusion, which I will share later.

 

The opening keynote speech by Professor Martin Marshall challenged our views of traditional research. The need to bridge the gap between the knowledge base that academia provides, and what actually happens in clinical practice was brought to our attention. He introduced the concept of participatory research, and by sharing his own experiences of being an embedded researcher in East London, he demonstrated the impact that this model may have in terms of knowledge creation and mobilisation.

The ‘Dragon’s Den’ was an exciting new addition this year. For some reason, our esteemed judges got slightly confused and enacted the ‘Strictly come dancing’ panel instead. But we had to forgive their mishap, as their sense of humour more than compensated for the error. The calibre of the candidates that were pitching was truly remarkable. Dr Kingshuk Pal from UCL propositioned HELP DIABETES – a fully-fledged online website that supports self management of diabetes. KP MadingleyHowever, the dragons were fierce in expressing their concern that HELP DIABETES would be another tool best suited to those who are already self motivated. The second pitch was by the medical education department at Imperial College London, who were asking for all medi
cal students to go to jail! madingley prisonThey put forward a passionate argument that this would improve their understanding of health inequalities and provide experiential learning of working with marginalised groups. This was a moving presentation that tugged at the heart strings of the audience, but the dragons questioned what would be removed from the curriculum in order to make way for this initiative. The last and final pitch was an online pathway, which offered advice, testing and treatment for chlamydia. Being practical and having demonstrated proof of success, it sealed the deal. madingley clam

One of the things that stood out to me from the presentations at SAPC this year, was that the conference clearly demonstrated the excellent insights that well-conducted qualitative research can offer. A particular presentation which highlighted this was by, Dr Nadia LLanwarne from Cambridge. She presented the findings of her research, exploring the missed opportunities for diagnosing melanoma in primary care and the patient experience along this journey from initial presentation to diagnosis. I certainly came away from the conference this year, feeling assured that qualitative research is both valuable and necessary – its role was cemented, in terms of putting quantitative research into context and relating it to the real and often ‘messy’ world we face in general practice.

Professor Roger Jones, editor of the BJGP, rounded up the conference with an excellent plenary session. Using his personal story, he talked about the degree of change we have seen in primary care over the years –  across academia, education and clinical practice. It was a real eye-opener! It was encouraging to hear the he still looks forward to going to work everyday and has maintained his enthusiasm for general practice, despite the ever changing working environment. Finally, the conference came to a close and we unanimously concluded that academic primary care was not sinking, nor swimming, but was indeed motoring!

madingley trials madingley care planning madingley ucl

PCPH research team conducts new multi-disciplinary studies on older people

RosieWebster6 October 2014

Two exciting studies on research participation and engagement of older adults in health promotion have recently been launched in the Centre for Ageing Population Studies (CAPS).

By Ann Liljas and Ana Jovicic

HomeHealth

In September 2014 the HomeHealth study looking at home-based health promotion interventions for older people with early frailty was launched.

HomeHealth logo

Our study is funded by the National Institute for Health Research (NIHR) Health Technology Assessment (HTA) Programme and aims to develop and test a home-based service to promote well-being and independence for older people with early frailty, designed for the NHS.

Led by Dr Kate Walters, the HomeHealth study will design a health promotion intervention tailored for people who are beginning to become frail. This part of the study will involve a review of the current literature, in particular focusing on which behaviour change techniques show most promise in older people with early frailty. Interviews and focus groups will also be conducted with older pre-frail people, carers, homecare workers, and community health professionals. A co-design approach with older people, carers, and experts will then be used to develop the home-based health promotion intervention. The feasibility of delivering this new service within the NHS will then be tested with a Randomised Controlled Trial.

HARP

The Healthy Ageing, Research and Participation (HARP) study is funded by NIHR School for Primary Care Research.

HARP follows on from the recently completed Well-being Interventions for Social and Health needs (WISH) study (2012-2013, funded by the Medical Research Council). In WISH, we found that people aged 85 and over, older people from some minority ethnic groups and those living in rented housing (a proxy for deprivation) are less likely to take part in health promotion initiatives.

Kalpa Kharicha leads the current study which aims to provide a better understanding of the reasons why these groups are less likely to take part in health promotion and research on healthy ageing.

The study will involve interviews and focus groups with older people who belong to at least one of the three ‘seldom heard’ groups mentioned above. This will help to find out what would help them stay healthy in later life, and their views on taking part in research and health promotion.

In addition, we are also looking for experts in ageing with knowledge of recruitment and engagement of older people for health promotion interventions to take part in a short questionnaire survey. Is this you or someone you know? Please email Ann Liljas at ann.liljas.13@ucl.ac.uk for more information.

For more information about the studies, contact Ana Jovicic at a.jovicic@ucl.ac.uk.