Being kind to ourselves: A feasibility randomised controlled trial of Compassion Focused Therapy to improve depression and anxiety in Dementia

Our work seeks to implement practical, positive improvements for individuals with dementia facing anxiety or depression. Getting a dementia diagnosis can trigger many difficult emotions and has been compared to a grief reaction, alongside a loss of autonomy, self-esteem and identity. With a distinct lack of treatments offering effective emotional relief, our study, aptly named "Being Kind to Ourselves," is all about helping individuals with dementia cultivate kindness towards themselves during distress. Beyond just a temporary solution, we are aiming for long-term positive changes that help individuals navigate dementia and low mood. 

Compassion Focused Therapy is a talking therapy that incorporates mindfulness techniques, breathing exercises and compassionate building exercises to help individuals foster a sense of safety and self-soothing. It aims to encourage individuals to use mental images that evoke feelings of compassion, safety and understanding, this might include an image of a flowing river, or a hug with a loved one. Compassion Focused Therapy is a unique approach as it places compassion at the core of the therapeutic process, providing individuals with a varied tool kit to help enhance their well-being through developing self-compassion and understanding. 

When we are unhappy, we may become self-critical about how we are coping, or mentally challenge ourselves about things we have done wrong in life. Memory problems can make us feel low and at times criticize ourselves. We hope that people with dementia attending Compassion Focused Therapy experience improvements in their mood, anxiety, quality of life and self-compassion. Previous research into compassion suggests that people can experience greater awareness, acceptance, control, improved coping, and wellbeing. 

The initial feasibility trial has now been extended to a full randomised controlled trial. The trial will look at things like how many people are suitable to take part, if people want to take part, dropout rates, and the cost of delivering Compassion Focused Therapy. All these will help us determine the ‘acceptability’ of Compassion Focused Therapy as an online or face-to-face intervention for people with dementia.

 

Patient and Public Involvement (PPI) is key to this project. Keith Oliver, a vital member of our team living with dementia, leads the PPI team which consists of people with various types of dementia and their supportive others. Keith and the team are always available to advise us on the many conundrums we face in the complexities of running this trial. We always feel confident that a conversation with any member of the PPI team will help us tackle these challenges, and help us to enhance the relevance, accessibility, and effectiveness of Compassion Focused Therapy to allow us to have more meaningful outcomes. 

Ultimately, the hope is that our work will show that Compassion Focused Therapy is effective for people living with dementia and low mood or at least contribute towards a better understanding of effective strategies to improve the lives of those affected by dementia, and the people around them.

Developing a psychosocial crisis intervention for people with a diagnosis of personality Disorder

People diagnosed with a personality disorder struggle with intense emotions and personal relationships, causing distress and impacting on their daily life, which can lead to self-harm or suicide attempts. Sadly, about 1 in 10 people with this diagnosis die by suicide, and the risk gets higher with each attempt. When someone with a personality disorder is in crisis, providing the right care can be challenging, especially as evidence on what works best is limited. Many people with this diagnosis also say the help they receive during a crisis is poor, pointing out that current approaches are not designed for them.

A few researchers internationally have started to produce evidence on what good care looks like, including developing crisis plans and brief talking therapies. In the UK, some NHS services are trying out new approaches to improving care, and there is some initial evidence this might be helpful. We plan to build on this in the LANTERN project.

This project aims to fill an important gap in evidence and develop a support package for people with a personality disorder diagnosis in crisis. We have got together a team including research and clinical leaders in this field and people with personal experience of using crisis services. As part of this Programme Development Grant (over 20 months), we will work closely with people who have lived experience of personality disorder and crisis care, their families or carers, and mental health professionals. Together we want to ensure that any new ideas are based on what people really need. This project will begin in Summer 2026.

Novel online observations for effective autism diagnostic pathways for preschool children

For young children identified with social communication and language differences, there are long waiting lists before autism diagnostic appointments. Our service in Barking and Dagenham functions well and is fully staffed but the waiting time for this age group is approaching 12 months. In the underserved populations of Barking and Dagenham, we suspect that there should be even more children on this waiting list as we know that some communities do not currently access our services.

The CHATA project was designed with this problem in mind and considers how to develop autism diagnostic service which delivers a high standard, safe and personalised approach which includes insights and strategies toward the specific challenges and supports that a child will need to thrive and is able to identify that child’s strengths. This is what parents tell us they need. The CHATA project has been developed to deliver this at a reduced cost and in a shorter time, integrated into existing NHS pathways.

The pandemic encouraged exploration of telemedicine. Our pilot project, carried out in the autism service in neighbouring Newham (which shares characteristics of socio-economic deprivation and minoritized communities with Barking) showed that telemedicine was feasible for all families and did not create technology barriers for any of the families who participated. We developed resources and translations to support families where Bangla and Urdu were their first languages and pictorial representations of some of the standard questions used in assessments to support understanding.

This pilot project of 60 observations, directed by a child and adolescent psychiatrist remotely, has many advantages. It allows observation of a child (who may be autistic and have a strong preference for known environments and predictable routines) in their own environment with their known caregiver: it is more likely to reflect that child’s usual way of interacting and communicating and was reported to be a good experience for parent and child. Observations collected remotely, allow up to 6 of these observations to be gathered in one day, compared with 2 in our area. Many services do not collect observations in person but delay assessment until the child is in a nursery setting, relying on the observations supplied by a nursery. However, our pilot research and parent consultations also told us that parents did not want to receive an autism diagnosis via telemedicine from someone they had never met in person. As it is recommended, and widely practised, for a young child to receive a physical examination and full neurodevelopmental assessment from a paediatrician as part of an autism assessment, it makes economic sense for the in person encounter for diagnosis to be part of this paediatric appointment. We therefore want to assess whether it is possible to refine and standardise the schedule of the remotely collected observations and for the observations to be delivered and assessed by someone who is well trained in autism assessments, but who is not necessarily qualified to make a diagnosis. This information will then be presented to the multidisciplinary team and decisions about the personnel required for the diagnostic appointment made. The project is due to start shortly.

Harnessing Portable Smart Camera Technology to Support the Communication Skills of People with Aphasia (HARP Aphasia Study)

More than 350,000 people in the UK have aphasia, a complex language and communication disability usually caused by stroke. Research has found that Speech and Language Therapy for aphasia can improve reading, writing and speaking skills, but it is challenging to generalise these benefits to everyday life. The National Institute for Clinical Excellence recommends that assistive technologies should be considered as a method to improve communication in people with aphasia, but there is currently a lack of evidence-based treatments.

The HARP Aphasia Study started in April 2024. It is funded by an NIHR Research for Patient Benefit Grant. The project is based at NELFT and is led by Dr Anna Caute of the University of Essex. The study started with a scoping review of the literature about the use of portable smart-camera technology in communication disabilities and rehabilitation, followed by a market survey of commercially available apps suitable for use in healthcare.

In the second phase of the study, we worked with people with aphasia and Speech and Language Therapists to develop a novel intervention. The new intervention used existing portable smart-camera technology to enhance the communication skills of people with aphasia, targeting spoken language and reading comprehension.

We conducted a series of focus groups and workshops with people with aphasia and Speech and Language Therapists. People with aphasia discussed ways that portable smart-camera technology could address communication difficulties and explore existing apps. They also had the option to carry out a photo diary about their communication successes and challenges and be interviewed about their communication experiences. We collaborated with people with aphasia and Speech and Language Therapists to develop the new intervention, which included a therapy manual. People with aphasia and Speech and Language Therapists provided feedback on the manual through workshops.

The study aims to support people with aphasia to improve their spoken language and reading comprehension and raise awareness among Speech and Language Therapists about the potential of portable smart-camera technology as a rehabilitation tool. The next phase of this study is currently in development.

No-one Left to Cope Alone. The development of a post-diagnostic intervention to support people newly diagnosed with dementia

 

Receiving a dementia diagnosis can be a life changing moment, often accompanied by feelings of anger, grief, and loss. Unfortunately, emotional support following diagnosis within NHS memory clinics can be lacking or inconsistently provided. While some support options exist, such as genetic counselling, referrals to Improving Access to Psychological Therapy (IAPT), or the use of medication, they all come with notable limitations, leaving a significant gap in care.

Psychosocial therapies and interventions with people with dementia have been found to be of benefit, but many fail to be scaled up for clinical practice. With no standardised post-diagnostic interventions within NHS services that help a person with dementia and their carer process and adapt to a newly given diagnosis; the objective of this research is to contribute to the creation of a novel post-diagnostic intervention.

Our Objectives:

• To understand current lived experience of receiving a dementia diagnosis and the provision of post-diagnostic support;
• To explore barriers and facilitators to implementing a post-diagnostic intervention in UK NHS Memory Services.

Interviews have been completed with interested and eligible stakeholders, including people with dementia, their carers, clinicians, and policy makers. The next phase of this study is currently in development.

RADAR (Research into Antipsychotic Discontinuation And Reduction)

 

Schizophrenia and recurrent psychosis are frequently long-lasting mental health conditions, associated with long-term disability and physical illness. The current recommended treatment for people with recurrent psychotic episodes consists of continuous antipsychotic medication, yet people with these mental health conditions  remain functionally impaired and antipsychotics can cause serious physical and mental side effects. For these reasons it is important that antipsychotics are only used where they are necessary, and benefits exceed harms.

Our initial RADAR study, which began in 2016, was the first study to examine the benefits and harms of gradually reducing and discontinuing antipsychotic medication in a flexible and supported manner compared to maintaining medication dosage in people with a diagnosis of schizophrenia or recurrent psychotic episodes. The original RADAR study found after 2 years, a gradual, supported process of antipsychotic dose reduction had no effect on social functioning compared to maintenance medication use. Relapse rates were increased in those who had been randomised to antipsychotic reduction, however. 

Some evidence suggests that outcomes among people who have reduced or stopped antipsychotics may start to improve after 3 to 4 years. This demonstrates the importance of longer-term follow-ups for studies which look at long-term antipsychotic treatment. Therefore, it is important to explore outcomes between the 2 groups over a longer period, including social functioning and relapse.

The follow-up study, which began in 2022, is a long-term follow-up to evaluate outcomes 4-7 years after initial enrolment in the RADAR study. We have followed the 253 individuals involved in the original RADAR study, who were recruited from 19 mental health NHS sites. We carried out a one-off assessment to investigate whether there are differences between people originally allocated to antipsychotic reduction and those allocated to maintenance treatment in social functioning, risk of relapse and other outcomes over the long-term. We hope this study will inform individuals with psychotic conditions about the long-term outcomes of attempting to reduce their antipsychotic treatment compared to continuing it. Results of this study are due for publication soon.

Open Dialogue: Development and Evaluation of a Social Network Intervention for Severe Mental Illness (ODDESSI)

 

In the NHS there are significant problems in providing care and support for people in a mental health crisis. More people are admitted to hospital than should be, leading to a shortage in psychiatric beds. In principle, community-based crisis teams are effective in managing crises in people’s homes. However, they are not as effective as they could be in preventing hospital admissions due to limited resources and the provision of short term crisis management.

Developed in Finland, Open Dialogue (OD) is a new method for working with people in crisis which works with the service user from initial crisis and beyond, organising treatment and longer term care to prevent crises recurring. In contrast to crisis teams, OD places a greater emphasis on working with the service user, their families and friends, and others (for example healthcare professionals or local community members) to form a network of support. Peer Support Workers (PSWs) are key members of each OD team and each team has at least one PSW to support other team members and assist service users to develop and maintain supportive social networks. There is some evidence from Finland to suggest that OD is an effective way to help people in crisis, but no high quality scientific studies have been undertaken to confirm this.

This research programme opened in 2017 has now completed 5 work packages; Development; Feasibility; Multicentre cluster RCT; Process evaluation and Service user and family experience of OD. The study aims to address the evidence gap and investigate whether current NHS services can be re-organised to implement OD and assess whether OD is effective for treating people in crisis. Further information can be found here: The ODDESSI trial | UCL Faculty of Brain Sciences