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.

This blog is written by Caroline Shulman and Megan Armstrong. Caroline has worked as a GP for people experiencing homelessness in primary care and as a clinical lead in a hospital homeless team. Caroline is principal investigator (PI) on a range of projects on palliative care, frailty and homelessness. Megan was the senior research fellow on this project and currently is the Programme Manager of PD-Care and the PI of exploring self-management in those experiencing low socioeconomic deprivation. 

Though everyone’s circumstances are different, to support people experiencing homelessness, it helps to understand some of the underlying causes of homelessness. Systemic factors such as austerity, increase in poverty and inequality, regressive changes to welfare systems, increased job insecurity with more zero hours contracts, lack of affordable housing and a hostile environment for migrants have contributed to significant increases over the last decade. However, in addition, there are individual vulnerabilities that increase the likelihood of becoming homeless. It is estimated 90% of people who are homeless have experienced adverse childhood experiences with 54% experiencing four or more (1). Adverse childhood experiences include abuse (emotional, physical, sexual or neglect) and household dysfunction such as living with domestic violence, or with a family member who has an addiction, is suicidal, mentally ill or in prison. Lack of having needs met and being soothed as a child impacts on cognitive, emotional, and social development and unresolved trauma is associated with an overdevelopment of the emotional and reactive parts of the brain (2).

People experiencing homelessness have some of the worst health outcomes of any group in society with the average age of death being in their early 50s  (see here). They have a much higher rate of most long terms conditions, including heart disease, respiratory disease than even populations in the most deprived sectors of society. Conditions usually found in older populations, such as cognitive impairment, incontinence, poor mobility, and frailty are highly prevalent at a young age in this population. Many people, with a history of sleeping on the streets in London, end up on homeless hostels. Homeless hostels are staffed by support workers who have no training in health or social care. In one hostel (for adults aged 35+), where residents average age was 55, frailty scores were equivalent to a population of people in their late 80s. All had multimorbidity with the average number of conditions per person being seven. Older age conditions such as cognitive impairment, falls and poor mobility were highly prevalent, though only 9% had any form of social services package of care (3).

One reason for the young age of death of people experiencing homelessness is the barriers they often face in accessing health and social care. Our study aimed to explore these barriers and potential facilitators from the perspectives of hostel residents and staff (4). We interviewed 18 homeless hostel managers/support staff and 15 people experiencing homelessness from six homeless hostels in London and Kent.

We found there were service barriers to health and social care access due to:

Stigma of both the residents and the hostel staff (often reporting not being believed):

“We have got one of the local GPs around here, they will not accept our residents unless a keyworker is with them, and they have to attend all appointments with them and register with them. They won’t accept them on their own.” Support worker

Lack of communication and information sharing from services with the hostel:

“I was that upset and annoyed that she’s [social worker] not speaking to anyone else that I’m working with [in the hostel]. I said, “It’s not keeping you up to date.” I speak to you once every three weeks, you don’t know what’s happening. So I could be going through a really difficult time and you’re not aware of it….” Resident

A lack of trust from the residents and a struggle to build relationships beyond the hostel staff:

“I’m still finding I’m having to learn to trust people. I don’t always trust people now, and my confidence is not brilliant. Once I know someone [this is different]…., but I’m not very good coming forward at the beginning.” Resident

Incorrect assumptions around capacity and the role of the hostel:

“I think because a lot of people presume because it’s [the hostel] a 24-hour manned project, they’ve got staff. They [external services] don’t really realise that our job isn’t to be carers…It’s not always practical to see everybody every single day. What people see from the outside is 24-hour staff” Support worker

The impact of lack of health and social care support led to staff going beyond their job role, continuous support needed by the residents, and burnout:

“We also have to go and collect people’s medications. We don’t have to but we’re doing that as well and liaising with GPs to put [medication] in dosette boxes and things like that.” Hostel staff

Overall, the hostel staff and residents had a great, trusting relationship. However, due to the lack of external service support, this can become a huge responsibility for the hostel staff. The quote below highlights the trust in the hostel staff.

“I think she [hostel staff member] cares about me. I’ve never actually asked her, does she care? The staff here are alright, I like them. I like the staff here. I ain’t got a bad word to say about them.”

An example of the causes of burnout for hostel staff include the trauma when a resident dies:

“When he was standing along the walls and he was saying, “I’m feeling pain,” and he just slid into the floor. It was during the night, early morning so there were only two staff. Staff were running up and down. It was quite a traumatic experience.”

See our recent paper and blog on palliative care for people experiencing homelessness.

What does this mean for primary care?

• Everyone needs to be able to register with a GP. Groundswell have developed ‘My Right to Healthcare’ cards that can be posted for free.
• Training is available for reception staff including a short 6 minute video: resources here
• Primary Care Networks should consider having an inequalities lead to explore local solutions. They could also undertake a self-assessment to support improved engagement with inclusion health groups (see here).
• Services should be person-centred, and trauma informed so that people feel safe, welcome, listened to and understood. Here is a video on trauma informed communication skills and an overview of training available here.
• Services need to recognise the importance of developing trust and trusting relationships, as these are at the heart of healing and recovery. Ideally with the continuity of care with the same provider.
• Services should  proactively support people with literacy, language, and cognition difficulties.
• Primary care services should consider how they can take care to people with the highest need to enable trust to be developed. For example, enhanced services undertaking in-reach into hostels can be highly successful in increasing engagement. Reaching out to frontline staff in homeless services, who often feel stigmatised, can be a first step in acknowledging the support they are providing and explore how they can be better supported.

It is our duty to find and care for those in our community who are excluded and marginalised and advocate for their needs. We need to embed inclusive care and assertive advocacy as core to our work.

References

1. Liu, M., Luong, L., Lachaud, J., Edalati, H., Reeves, A., & Hwang, S. W. (2021). Adverse childhood experiences and related outcomes among adults experiencing homelessness: a systematic review and meta-analysis. The Lancet Public Health.
2. Bennet, M.S. (2017), ‘Connecting Paradigms: A Trauma-Informed & Neurobiological Framework for Motivational Interviewing Implementation’, Bennett Innovation Group, Denver.
3. Rogans-Watson, R., Shulman, C., Lewer, D., Armstrong, M., & Hudson, B. (2020). Premature frailty, geriatric conditions and multimorbidity among people experiencing homelessness: a cross-sectional observational study in a London hostel. Housing, Care and Support.
4. Armstrong, M., Shulman, C., Hudson, B., Stone, P., & Hewett, N. (2021). Barriers and facilitators to accessing health and social care services for people living in homeless hostels: a qualitative study of the experiences of hostel staff and residents in UK hostels. BMJ open, 11(10), e053185.

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.