CTF Study — Being kind to ourselves

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. 

This study is a feasibility trial, this means that results from this trial will determine if a full randomised controlled trial is warranted. 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.

We aim to recruit 50 people with mild to moderate dementia and symptoms of low mood from 4 sites across the UK. For those individuals that are randomised to the treatment arm, they will be offered 12 1-hour sessions of group Compassion Focused Therapy, online or face-to-face, depending on their preference.  We will also run a 1-hour carers workshop to inform carers about Compassion Focused Therapy and how best to support the person they care for outside the therapy room. 

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 4 people with various types of dementia and one wife/supportive other. Keith and the team are always available to advise us on the many conundrums we face in the complexities of running this feasibility 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. 

For further information, please contact Melissa Melville, at melissa.melville@nelft.nhs.uk 

HARP

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 North East London NHS Foundation Trust and is led by Dr Anna Caute of the University of Essex. The study will start 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 will work with people with aphasia and Speech and Language Therapists to develop a novel intervention. The new intervention will use existing portable smart-camera technology to enhance the communication skills of people with aphasia, targeting spoken language and reading comprehension.

We will conduct a series of focus groups and workshops with people with aphasia and Speech and Language Therapists. People with aphasia will discuss ways that portable smart-camera technology could address communication difficulties and explore existing apps. They will also have the option to carry out a photo diary about their communication successes and challenges and be interviewed about their communication experiences. We will collaborate with people with aphasia and Speech and Language Therapists to develop the new intervention, which will include a therapy manual. In the final stage of the study, people with aphasia and Speech and Language Therapists will provide 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.

Contact Us: You can get in touch with us by emailing R&D@nelft.nhs.uk or Leila.Mirza@nelft.nhs.uk

NOLA

Introducing NOLA: 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 will be arranged with interested and eligible stakeholders, including people with dementia, their carers, clinicians, and policy makers. Recruitment for the study will begin in July 2024 and will continue until July 2025.

For further information, please contact the NOLA: nola@nhs.nelft.uk

Radar Follow up

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 current 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 aim to follow the 253 individuals involved in the original RADAR study, who were recruited from 19 mental health NHS sites. We are carrying 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. 

For further information, please contact: radar@nelft.nhs.uk

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 has 5 work packages; Development; Feasibility; Multicentre cluster RCT; Process evaluation and Service user and family experience of OD.  The Development study opened in 2017 and the RCT has just completed.  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.