Alice Burnand, Associate Researcher, Centre for Ageing Population Studies (CAPS) shares her experience hosting a dementia workshop. 

Introduction

On October 11^th, 2023 I hosted a workshop to share results from our research project, which brought together a variety of individuals such as clinicians, caregivers, and researchers. Our research project involved evaluating the current literature on the non-pharmacological interventions to manage psychosis symptoms in dementia, such as hallucinations and delusions. I wanted to share the take-home messages of this research, to improve the quality of care that is delivered to people living with dementia. The workshop, however, was not just about sharing knowledge but also about rich interactions, meeting individuals who have unfortunately been affected by dementia-related psychosis, the exchange of ideas, and invaluable feedback about this important research topic.

The Workshop’s Concept

The workshop was titled “non-pharmacological interventions in the management of dementia-related psychosis”. It aimed to educate the audience on the symptoms and causes of psychosis in dementia, how to optimise physical health and the environment for someone, and to share the current literature to best support individuals without the need for medication. It also aimed to inform the audience of the risk of bias in research, to enable them to make informed decisions about the quality of the papers that we discussed. The aim was to empower caregivers and healthcare professionals, and to share valuable tools that can be used to support people living with dementia.

Planning and Preparation

It all began with meticulous planning and inviting a guest speaker to collaborate and join. In the months leading up to the event, I outlined my goals, determined my target audience, and designed the content to be engaging and informative. I originally wanted the workshop to be help in person, with 20 attendees, however, I quickly gained a vast amount of interest following circulation of the information, with nearly 100 people signing up asking to join. I chose to do the workshop hybrid, to make it as accessible as possible and so that everyone who wanted to join, could. For those coming in person, I chose a venue in a central London location, and ensured I provided all the necessary supplies, including printouts, drinks, and importantly, chocolate biscuits.

The Workshop Experience

Learning and content

The workshop started with educating the audience on psychosis in dementia and how to prevent it by ensuring physical health is optimised. It was led by myself and the guest speaker, Dr Stephen Orleans-Foli, who is a consultant psychiatrist working in the Cognitive Impairment and Dementia Service, West London NHS Trust. We then discussed the current research that aims to support individuals living with dementia without medication, and whether these are effective or not. Examples of these therapies include music therapy and aromatherapy and we discussed how to “trial” these. The aim was for the audience to apply the knowledge learnt in the first half to the content and the activities in the second half.

Group Discussions

After the teaching took place and in the second half of the workshop, we invited individuals to join “break-out rooms” on Zoom, and those in person were in groups sat round tables. We had 3 vignettes for groups to discuss for 5 minutes, about how they would best manage a situation, applying the knowledge they had just learnt. We then invited individuals to share their ideas and perceptions. It was incredible to see how different perspectives and life stories enriched the discussion and inspired others. An example of a vignette is below.

How would you manage?

86-year-old widow lives with her daughter. She has a 3-year history 3 of Alzheimer’s disease dementia (ADD). She is currently on Donepezil for her ADD. She spends the day looking for certain clothes in her wardrobe and leaves some of these strewn around the bedroom and lounge. She accuses her daughter of theft as some of her clothes are missing. She repeatedly calls the police on her daughter.  Her daughter repeatedly challenges her mother that she has no need of her mother’s clothes as they don’t fit and not her style.

Post-Workshop Reflection

A supportive environment

It was great to have such an interactive audience and individuals who were keen to get involved to raise points of interest and ask questions. It can always be a worry when asking the audience to get involved – but we had some great feedback and interaction from the audience which I was very grateful for!

Personal and Professional Growth

As the facilitator, witnessing the resilience of caregivers and healthcare professionals as they shared personal experiences was inspiring, and the huge interest in the workshop demonstrated how dementia-related psychosis affects so many people. For me, this has reaffirmed the importance of researching this topic.

Participant Feedback

The feedback received from participants following the workshop was incredibly rewarding. Many expressed how the experience had helped shape their approach to caregiving and had provided useful information in their supportive roles for people with dementia.

Conclusion

Hosting the workshop was an experience I thoroughly enjoyed. It was great to know the work you have put into researching receives appreciation from people who are directly impacted by the condition. It has helped me to understand the need for further research in this area, and I look forward to more opportunities to contribute to research and make a difference.

If you would like a copy of the recording or the slides of the workshop, please email Alice Burnand – a.burnand@ucl.ac.uk.

Acknowledgement

This research project and workshop were funded by the School of Primary Care Research at UCL. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

In this post Nathan Davies talks about some of the recent work he has led on support family carers of people living with dementia, and talks about some of the Covid-19 work which has been implemented in the NHS.

This week marks Carers Week, you may have all seen in the media the wealth of stories and people talking about the challenges that informal carers (friends or family) have experienced over this past year during the pandemic. Carers UK have reported this week that 72% of carers have not had any breaks from their caring role since the start of the pandemic (1).

We know one of the most demanding caring roles is caring for someone living with dementia, with over 750,000 carers currently in the UK. Most of my work looks at how we can support family carers, in particular in the later stages of dementia or planning for the end of life. This is a particularly difficult time for carers and one of the key challenges they face is making decisions about the individual’s care. Decisions may include moving into a care home, increasing the amount of support, managing eating and drinking difficulties, and ensuring the everyday well-being of the individual.

In a recent project we explored the decision-making process carers go through and how they make decisions(2). We developed a model of decision making which considers the context and the processes involved. Making this process and the context explicit may be helpful for carers as a guide to help their thinking when making complex decisions, but also for professionals when trying to start significant conversations.

It is important to consider the context in which decisions are being made including the individual’s personal preferences about their care, any advance care plans they have made or lasting power of attorney in place, considering if the person still has capacity and what their current health status is, and finally, thinking about what support is available from others.

As you can see in the image there were 7 stages in making a decision:

1. Identifying who is the decision maker or the team and clarifying what is their role
2. Sharing information about the decision which needs to be made, this may include what the problem is, what are your options etc
3. Clarifying what is important to those involved, considering their values and preferences, being mindful of disagreement
4. Managing and considering the emotions involved in making what can be quite significant decisions
5. Think about what is the feasibility of the options which are available – this is likely to include finances and the impact on the wider family or support network
6. Balancing what you would like to do (preferred choice) with what you can actually do
7. Make the decision and reflect on the outcome of this decision to inform further decisions or refine your decision

Now this may all seem rather theoretical, but we have already used this to create some applied resources which carers and professionals can use to help with discussions and decisions.

We have developed a decision aid to support family carers of people living with dementia who are at risk of or who have Covid-19 and are not able to make their own decisions. The decisions focus on care at home, care in the care home and care in hospital. In particular, we have included:

• How to manage care at home
• How to support your relative/friend in a care home
• What to do if they become unwell
• Should they go to hospital
• How to keep in touch if you can’t visit

We provide a variety of information including the signs and symptoms of COVID-19 which may be different for older people, and the legal aspects of making decisions. We bust some myths about what support options are available at home. We also consider the benefits and advantages of different options of care including going into hospital.

This guide has been widely shared and is freely available online. It has been implemented as part of NHS England and NHS Improvement Dementia COVID-19 Pathway.

The latest version of the decision guide is available now from: https://www.ucl.ac.uk/psychiatry/decision-guide

For our work on this we also won Alzheimer’s Society’s Dementia Hero Award for Research.

1. Carers Week 2021 report. Breaks or breakdown Carers Week 2021 report. London; 2021.
2. Davies N, De Souza T, Rait G, Meehan J, Sampson EL. Developing an applied model for making decisions towards the end of life about care for someone with dementia. PLoS ONE. 2021.

We have a fantastic post below from Vennie an A-level student aspiring to study Medicine at university. She visited the Research Department of Primary Care and  and shadowed some of our academics in their various projects in July. In this post talks about her experience and what she took away from it. 

Dementia is an increasing problem especially with the growing older population in the UK. The awareness of dementia is rising, especially through the use of media and organised events such as Memory Walks. However, how much do we know about dementia?

Well, in simple words, dementia is the ongoing decline in the brain. This is only an umbrella term for 200+ different sub-types of dementia that exists, some of which you may have heard off. For example the most common two are Alzheimer’s disease and vascular dementia.

During my placement in the Research Department of Primary Care and Population Health at the Royal Free Hospital, I was able to shadow members of the team that are involved at different levels of research projects.

I discovered that there are many stages which make up the process of a research project. Starting with the planning and design of the research project, ethics, and recruitment through to finally analysing and presenting the results produced. Alongside all this and integrated throughout are processes to ensure the results are implemented into clinical practice and policy, to make a difference. I learnt about the different types of studies such as qualitative studies and large clinical trials. Due to the involvement of human participants including often patients from the NHS in the studies the department runs, a major part of the research process is the ethical application and review. The purpose of the review is to establish if the project has more benefit than risk to the person and their family as well as is the project being conducted sensitively. For all of this to happen, it may take 5 to 20 years to see a difference in practice and policy.

In order for, this project to be successful, a range of people are required to take part, which in turns bring a variety of skills into the mix. These individuals may include designers, programmers, clinicians, psychologists, sociologists, statisticians, qualitative researchers, and importantly patients and their family themselves. A few of the most prominent skills are communication, teamwork, determination and resilience. For example, a project with Dr Davies and Prof Rait I observed on producing a support package for people with dementia and their families, communication has a massive role to play. The project uses workshops with people with dementia, their family and professionals to develop the support package. There is a need for clear communication between the ranges of people for this project to progress smoothly. The communication may come in the form of discussion-based in meetings, emails and many other ways. Therefore, teamwork is essential as each person will have a special role in the project. Finally, determination and resilience are required from every member of the team as there will be challenges along the way, which could be out of your control that must be overcome. For example, if the project does not meet the criteria of the ethics committee it may be returned to the researcher, and his or her team must go back and amend the plan.

In conclusion, research of any kind similar to this project requires a range of people to be involved with a variety of skills that are vital for the research to work. This work experience has been a fascinating and exciting opportunity for me to experience what goes on behind the scenes of a research project.

In this post Tra Pham (UCL Research Department of Primary Care and Population Health) discusses her recent work with colleagues from the department, Division of Psychiatry and King’s College London on new diagnoses of dementia and the differences among ethnic groups.

Around 46.8 million people worldwide have dementia; this is expected to rise to 131.5 million by 2050. Recent studies have reported stable or declining rates of new dementia cases overtime.

In 2010, members of our department (Rait et al, 2010, BMJ) conducted a primary care database study to investigate survival of people with a diagnosis of dementia, and reported a stable rate of new dementia diagnoses in UK primary care between 1990 and 2007. We know little about the differences in the likelihood of receiving a dementia diagnosis among different ethnic groups. Some evidence has indicated that people from Black and Minor Ethnic (BME) groups present at services (i.e. GP) later in their illness. Therefore, compared with the White British ethnic group, BME dementia patients may have less access to timely diagnosis. This can prevent them from benefiting from early intervention and treatment which may help slow the progression of the disease.

Our recent study reported the overall rate of new dementia diagnoses in UK primary care between 2007 and 2015. In addition, we reported, for the first time, the rate by White, Asian, and Black ethnic groups. Pulling together current best evidence of new dementia cases in the community and the 2015 UK census data, we estimated the proportion of White and Black people developing dementia who received a diagnosis in 2015. Our hypothesis was that there would be a smaller proportion of Black people with dementia who were diagnosed compared with people from the White ethnic group.

We analysed data of 2.5 million older people from The Health Improvement Network (THIN) database. 66,083 new cases of dementia were identified, which corresponded to an increased rate of new dementia diagnoses between 2007 and 2015 (Figure 1).

Compared with White women, the dementia diagnosis rate was 18% lower among Asian women and 25% higher among Black women. This rate was 28% higher among Black men and 12% lower in Asian men, relative to White men. Based on diagnosis rates in THIN data and projections of new dementia cases from community cohort studies, we estimated that 42% of Black men developing dementia in 2015 were diagnosed, compared with 53% of White men.

The results thus suggest that the rates of people receiving a diagnosis may be lower than the actual rates of developing dementia in certain groups, particularly among Black men. There are several possible explanations for this. It could indicate that Black men experience barriers to accessing health services or receiving a diagnosis. GPs may be more reluctant to diagnose dementia in BME groups especially if culturally competent tests are unavailable. GPs and families might also be reluctant to name dementia in communities where more stigma is associated with a diagnosis.

Our study emphasises the need for service improvement targeting BME groups who might be facing barriers to accessing health care services and getting a dementia diagnosis. GPs should be equipped with culturally appropriate assessment tools in order to make a timely diagnosis of dementia for BME patients.

Our findings also highlight the importance of raising awareness of the benefits of getting a timely diagnosis of dementia, particularly in people from minority ethnic groups who may be more at risk of dementia. Timely diagnosis of dementia can lead to more targeted support and enable GPs to provide appropriate patient care management. These benefits can be explained to the patients by family and friends, as well as professionals such as nurses and social workers. They can also help the patients to overcome the fears of talking about dementia. Faith and community groups can contribute to ensuring that local dementia services are accessible to all.

This study is conducted in collaboration with King’s College London. This work is supported by The Dunhill Medical Trust [grant number R530/1116]. Our article and relevant references can be found at:

Pham TM, Petersen I, Walters K, Raine R, Manthorpe J, Mukadam N, Cooper C (2018). Trends in dementia diagnosis rates in UK ethnic groups: analysis of UK primary care data. Clinical Epidemiology (10): 949-960. doi: 10.2147/CLEP.S152647.

This article is courtesy of the UCL Research Department of Primary Care and Population Health blog