Our research news

Are you a health/social care professional or student working with users of Assistive Technology (AT), ie with people with learning disabilities or dementia? 

If so, you may be interested in a new free training programme being developed as part of the ADAPT Project. Thee participant group would largely be clinical staff working with patients living with dementia or with learning disabilities.

The ADAPT AT Training is being evaluated by Canterbury Christ Church University.  Following completion of each Unit you will be invited to participate in the research study, which involves completing an online questionnaire regarding your experiences and views of the training.  Your participation in the study will help further shape the training as well as determine its impact on practitioner knowledge/understanding in the area.

UNIT 1 : Foundations of Assistive Technology

UNIT 2: Understanding Disability

UNIT 3 : Assistive Technology for Posture and Mobility

UNIT 4 : Assistive Technology for Communication

UNIT 5 : Evidence-based practice for Assistive Technology

UNIT 6 : Train the Trainer in the use of SMART wheelchair technology

See the flyer here

For further information, please visit  https://www.canterbury.ac.uk/medicine-health-and-social-care/adapt/the-adapt-project.aspx

If you would like to enrol, please email adapt.training@canterbury.ac.uk

We are preparing for our Centre for Dementia Studies online research conference which is going to run over two days and we'd like to invite you to attend:

23 & 24 February 2022, 10.00am - 4.00pm (GMT)

Professor Naji Tabet, Director Centre for Dementia Studies and Dementia Lead ARC KSS, will host a range of speakers (with a mix of live and pre-recorded presentations) focusing on key themes: implementation of findings in clinical services and Improving quality of life for people with dementia and their families and carers.

Everyone welcome

See the flyer with more information here

Please book your free place via Eventbrite: https://centrefordementiastudiesconference2022.eventbrite.co.uk

Caring for someone with dementia can be exhausting as sleep for the person with dementia and also the carer can be disrupted. Sussex Partnership is taking part in a trial of strategies that could help promote better sleep. Little changes could make a big difference and the carer can apply them to their own sleep regime and also to help their relative with dementia. 

We want to see if people who receive DREAMS START (Dementia Related Manual for Sleep: Strategies for Relatives) have better outcomes than people who receive usual care without DREAMS START.We would like to invite family or friends who support someone living with dementia to try out a new intervention (DREAMS START) to reduce the sleep difficulties experienced by people living with dementia at home.  

The study is led by University College London (UCL) with Camden & Islington NHS Foundation Trust, the University of Oxford, the University of Sussex, Tees, Esk and Wear Valleys NHS Trust and University of Plymouth. It is funded by the National Institute of Health Research: Health Technology Assessment (NIHR HTA).

See the poster here

For more information, please contact Caroline Connell: dementiaresearchunit@sussexpartnership.nhs.uk

Common antidepressant should no longer be used to treat people with dementia, study says

A drug used to treat agitation in people with dementia is no more effective than a placebo, and might even increase mortality, according to a new study.

The research, led by the University of Plymouth and published in The Lancet, has shown that antidepressant mirtazapine offered no improvement in agitation for people with dementia – and was possibly more likely to be associated with mortality than no intervention at all.  

Agitation is a common symptom of dementia, characterised by inappropriate verbal, vocal or motor activity, and often involves physical and verbal aggression. Non-drug patient-centred care is the first intervention that should be offered but, when this doesn’t work, clinicians may move to a drug-based alternative.

Antipsychotics have proven to increase death rates in those with dementia, along with other poor outcomes, and so mirtazapine has been routinely prescribed. This study was designed to add to the evidence base around its effectiveness.

Funded by the National Institute for Health Research (NIHR), the study recruited 204 people with probable or possible Alzheimer’s disease from 20 sites around the UK, allocating half to mirtazapine and half to placebo. The trial was double-blind; meaning that neither the researcher nor the study participants knew what they were taking.

The results showed that there was no less agitation after 12 weeks in the mirtazapine group than in the control group. There were also more deaths in the mirtazapine group (seven) by week 16 than in the control group (only one), with analysis suggesting this was of marginal statistical significance.

Lead researcher Professor Sube Banerjee, Executive Dean of the Faculty of Health and Professor in Dementia at the University of Plymouth, explained why the results were so surprising, but important.

“Dementia affects 46 million people worldwide – a figure set to double over the next 20 years. Poor life quality is driven by problems like agitation and we need to find ways to help those affected,” he said.

“This study shows that a common way of managing symptoms is not helpful – and could even be detrimental. It’s really important that these results are taken into account and mirtazapine is no longer used to treat agitation in people with dementia.

“This study has added important information to the evidence base, and we look forward to investigating further treatments that may help to improve people’s quality of life.”

Dr Richard Oakley, Head of Research at Alzheimer’s Society said: “Unnecessary prescribing of antipsychotics to people with dementia is dangerous and associated with a higher risk of death, which is why we’ve been campaigning hard to reduce levels since the late 90s, saving tens of thousands of lives. The gold star treatments for agitation don’t involve drugs and are tailored to the person – like arts and crafts or movement to music. In recent years antidepressants – like mirtazapine – have been considered a fallback if non-drug approaches don’t work.

 “While only a small study, these results suggest a rethink is needed. Not only was the drug ineffective at reducing agitation, it was associated with more deaths, suggesting mirtazapine should be avoided in Alzheimer’s – and research carried out to understand its effects in other types of dementia.”

"This is a large national randomised controlled trial led by BSMS which also involved over 20 clinical research centres across the UK. Our study tested mirtazapine for the treatment of patients with dementia who present with agitation. The data showed no benefit for mirtazapine with potential for serious side effects. The negative results show again the challenges faced by clinicians in managing behavioural and psychological symptoms of dementia and alert specialists to the potential harm of using commonly available psychotropic medications, especially when efficacy is unproven". Professor Naji Tabet, Director of Centre for Dementia Studies, BSMS

“As a multi centre complex clinical trial - SYMBAD was fully supported by the Joint Clinical Research Office (JCRO) who ensured seamless set up, co-ordination and delivery throughout the three years of the project. It is wonderful to see the fruition of all the hard work across the multiple functions and organisations involved in SYMBAD with this Lancet publication. SYMBAD has produced not only publications and outcomes for patients but also established BSMS as a playing a lead role in the design and delivery of large scale, high quality clinical trials.”  Tanya Telling, Joint Clinical Research Office (JCRO)

The full study, entitled Study of mirtazapine for agitated behaviours in dementia (SYMBAD): a randomised, double-blind, placebo-controlled trial, is available to view in The Lancet.

See this link  

The study was co-authored by:

·       University of East Anglia, Brighton and Sussex Medical School, LSE, University of Exeter, Birmingham and Solihull Mental Health Foundation NHS Trust, University of Manchester, UCL, Trinity College Dublin, Surrey and Borders Partnership NHS Foundation Trust, Alzheimer’s Society Research Network,  University of Cambridge, Cambridge and Peterborough Foundation Trust, Newcastle University. Sussex Partnerhship was pleased to be a site for this study and extends thanks to everyone who took part.

Information provided by University of Plymouth

Our Dementia Research Unit is delighted to be part of a new drug study called 'ASPECT'

This study is looking at a drug called AVP-786. It is anticipated that AVP-786 will have a positive effect on agitation in patients with Alzheimer’s dementia. The study drug has been tested in 15 completed neuropsychiatric studies and has been safe and generally well tolerated so far. This study will assess the effectiveness, safety and tolerability of two doses of AVP-786 compared to placebo.

The study will include approximately 750 participants aged between 50-90 years old. Duration of participation is approximately 20 weeks including a 4 week screening period, 12 week treatment period and one month safety follow up period. Treatment will be blinded, meaning no-one will know which treatment participants receive. Participants will undergo procedures such as blood samples, questionnaires and ECGs. Each participant must have an appointed caregiver who has direct and regular contact with them (at least 2 hours a day for 4 days a week), to provide reliable answers to questions related to the participant and also themselves.

 THANK YOU very much for your continued support of dementia research.  It is referrals from our clinicians at Sussex Partnership and the volunteers participating that enables clinical research and ultimately improved treatments and care. 

This is a global drug study from Avanir pharmaceuticals and we are delighted to be one of 7 sites across the UK.

The study opened October 2021 and is planned to close closure October 2024

For more information please contact: Rachel Russell, Dementia Research Nurse

DementiaResearchUnit@sussexpartnership.nhs.uk

The 'Practical Handbook Of Hearing Voices: Therapeutic And Creative Approaches' includes chapters written by Dr Mark Hayward, who writes from a clinical perspective and Angie Culham and Sheila Evenden, participants in therapy for voice-hearing.

'Voice-hearing’ generally means hearing someone or something talking when the source of the voice does not seem to be physically present. For some people this experience can be unwanted, intrusive and distracting, and the voices can be very negative and critical in what they say. It may not be possible to make the voices go away, but there are lots of ways to try and live well despite the continued presence of voices and this is the focus of the book.

The chapters written by the Sussex experts focus upon Cognitive Behaviour Therapy (CBT) and Relating Therapy, two of the therapeutic approaches utilized within the Sussex Voices Clinic. Each of these approaches encourages hearers to accept, rather than instinctively fight against the voices. From this position of acceptance, hearers are supported to be curious and ask questions about their voices and explore the accuracy of their comments: am I as worthless as the voices say I am; can the voices make bad things happen if I disobey them; what do I want to do? In Relating Therapy, they learn to stand-up for this view by assertively responding to voices. Angie and Sheila share some of their experience of Relating Therapy and how it supported them to relate differently to their voices. Some of these insights are shared through poetry.

The book will be a useful resource for practitioners and trainee practitioners in this fields as well as for people who hear voices and their families and friends.

Angie Culham, who has benefited from relating therapy, said' 'Relating therapy was very helpful for me. I struggled with it a bit at first because it’s a bit intense but it's worth that bit of discomfort to get to the outcome. I don't get so bullied by my voices now that I've learned to be more assertive with them.'

Sheila Evenden, who has also benefited from relating therapy, said, 'It has made a huge impact on my life - I feel like I'm an active participant in my own therapy. I've also found the therapists are interested in me as an individual, which is in itself therapeutic.'

To find out more please contact: 

research@sussexpartnership.nhs.uk

If you would like to contact the Voices Clinic:

Email: voices.clinic@sussexpartnership.nhs.uk

Tel: 07825 752279

Twitter@sussexvoices

Evoke (and Evoke+) is a 3-year study which aims to find out whether an established diabetes drug (Semaglutide) has a positive effect on early Alzheimer’s disease. The trial will compare Semaglutide against a placebo on the effect on cognition and daily functioning. Semaglutide is already used to treat people with type-2 diabetes. 

Participants will take part at our Dementia Research Unit, based in Crowborough. 

Our friendly team of clinical research coordinators will take you through every stage of the research process, including consents and a cuppa. Travel expenses will be reimbursed, plus refreshments and a small inconvenience payment.

Professor Naji Tabet, Director Centre for Dementia Studies and Dementia Research Unit is the UK Chief Investigator on these studies.

Who can take part? 

You may be able to take part if you are: 

• Aged 55-85 

• Have a diagnosis of Mild cognitive impairment or mild dementia due to Alzheimer’s disease 

• Have a study partner who is willing to take part in the study with you. 

See the study information leaflet

To find out more please contact: 

Sinead Clarke-O'Neill or Marcela Carvajal
Clinical Research Coordinators
Dementia Research Unit, Grove House, 
Crowborough TN6 1HB

Office Tel: 01892 603107 (Please leave a message)
Email: dementiaresearchunit@sussexpartnership.nhs.uk

We're running a exploring the experiences that people from Ethnic Minority communities have had when accessing and engaging with Sussex Partnership Foundation NHS Trust (SPFT) services, including during the COVID-19 pandemic. The responses will help us better understand what is working well and to make recommendations to the Trust Board on what could work better.

We are looking for service users to share their feedback

Who can take part? 

• Aged 16 years or over
• Identify as being from any of the following groups Arabic, Asian, Black/Caribbean/African, Chinese, South Asian, of mixed heritage or any other UK ethnic minority group.
• Speaker of any language (translations and interpreters can be provided)
• Either a current or past SPFT user of secondary services but must have used the services since March 2020

 What does taking part in the study involve?

• Creative Workshops: To explore your experiences of accessing Sussex Partnership NHS Services.

                                                              And/Or

• Semi-Structured Interviews: Conducted with a Peer Research Assistant via telephone or virtual platform (e.g. Zoom)

Participants will receive vouchers as a 'Thank You' for their time and efforts in the study. Please see the study poster for more information

For more info or to refer potential participants, please contact kiranpal.kaur@spft.nhs.uk or aparajita.pandey@spft.nhs.uk

Four new research clinics have been commissioned to support people with a range of mental health issues in Sussex.

The clinics, run by Sussex Partnership NHS Foundation Trust, will centre around providing help, advice and treatment for people with paranoia, neurodevelopmental conditions, post-traumatic stress disorder (PTSD) and young people with emerging mental health problems in schools.

Sussex Partnership provides specialist mental health and learning disability services across the south east, and has a one of the most research-active mental health Trusts in England, focusing on dementia, young people, psychosis, brain and body, mood and anxiety, learning disability, personality, emergency and complex care, and approaches to involvement and recovery.

The clinics create innovative environments that bring together researchers and clinicians to implement and evaluate the latest interventions.

Dr Mark Hayward, Director of Research and Development and Lead for the Sussex Voices Clinic at Sussex Partnership, said: “We are committed to offering treatments to our patients that are informed by the latest research evidence. Expanding our research clinics will support us in this respect. But we don’t want to stop there! We want to keep asking questions about how these interventions can be improved and offered to more patients. Our clinics will bring together researchers and clinicians to establish a virtuous cycle that will help us to continuously improve the services that we offer to our patients.” 

The four new clinics will help bridge the gap that often exists between research and clinical practice, as well as working with service users and people with lived experience of mental health conditions to help inform the service, research and treatments.

The four new clinics are:

 The Neurodivergent Brain-Body research clinic which will run within the existing clinical service, to provide and evaluate targeted interventions to improve both physical and mental health for neurodivergent people in Sussex. Neurodevelopmental conditions affect up to 10% of the population and include autism, attention-deficit hyperactivity disorder (ADHD) and Tourette syndrome, contributing to neurodivergence. 

·       The Mental Health Support Team Research Clinic will work within schools as this is the place where young people spend much of their time. Although there are evidence-based treatments for depression and anxiety in young people, most young people do not access these treatments for a variety of reasons. First steps will be to evaluate the effectiveness of this configuration in the school setting and then develop training to support children and young people with obsessive compulsive disorder (OCD), PTSD, Autism, and neurodiversity in this context.

·       The SlowMo Research Clinic will implement SlowMo therapy in Sussex Partnership Assessment and Treatment and Recovery services. SlowMo is the first evidence-based (from the national SlowMo study) digital psychological therapy designed specifically for paranoia. This eight-week therapy is assisted by an app downloaded onto a mobile phone. Therapists work with the person to identify their worries, and then help them find ways to slow down and take a moment when they notice their worries. The clinic will work closely with the Sussex Recovery College to integrate the therapy into the curriculum and to promote early intervention and self-management.

·   TThe PTSD Research Clinic will allow the Trust to improve outcomes for people with PTSD, by increasing access to evidence-informed treatments and also supporting researchers to learn what treatments work for whom. The experience of traumatic events is common in people supported by mental health services. A significant proportion of people meet criteria for PTSD, including Complex PTSD. It is likely that there will be an increase in people seeking help for PTSD, given the context of Covid-19 exacerbating pre-existing PTSD, and newly developed PTSD from Covid-related and other experiences.

These new clinics will join our other clinics which lead on research into voice-hearing, OCD, eating disorders and immunopsychiatry.

Is it possible to reduce the distress associated with auditory hallucinations (also known as hearing voices)?

Mark Hayward, clinical psychologist, R & D Director at SPFT and Director of Sussex Voices Clinic, has been selected as an expert in voice hearing experiences within the ASK programme 

Other suggested questions to pose could be:

Can patients learn to accept their voice hearing experiences?
Will successful therapy remove the experience of distressing voices entirely?
Does the stigma around hearing voices influence the approach to therapy?

Mark will respond to these and other questions that are posted.

To put your questions Dr Hayward now see here: https://psychwire.com/ask/profiles/1e592te/mark-hayward

Depression is very common in people with Alzheimer’s disease and other dementias, causing them distress as well as reducing their quality of life and that of their carers. Unfortunately, antidepressant drugs do not have clear effectiveness in these patients and it appears that the most commonly available psychological therapies such as cognitive behavioural therapy or CBT are also not consistently useful.

The PATHFINDER study will investigate whether an adapted form of problem-solving therapy called Problem Adaptation Therapy (PATH), which has been reported to be helpful in the very early stages of dementia in an American university-based healthcare system, can be successfully applied in an NHS setting and with patients who are representative of those seen with dementia and depression in the NHS.

If you would like to talk to us about this study, please contact us

Can you help increase our understanding of the impact of coronavirus and changing of restrictions on our mental health?

We're supporting researchers from the University and Southern Health to ask people to complete a short, 15 minute questionnaire about the impact coronavirus has had on their lives and how people are coping with restrictions changing. They will use this information to support our understanding of how our mental health and wellbeing may be being affected by the pandemic but also what may be helpful for people.

Can you spare 15 minutes to help? Click on the link to the questionnaire for more information: bit.ly/PIOC19-3

When asked where you heard about this study, please select NHS Trust/Hospital

and on the following page please select ‘Sussex Partnership NHS Foundation Trust’

For more information please contact us: askaboutresearch@sussexpartnership.nhs.uk

The CRQ study is seeking views of carers who are involved in supporting a loved one who has experience of psychosis

The study is aiming to carry out full testing of a new questionnaire that looks at the wellbeing of carers of those with psychosis and schizophrenia. It is a one off survey, that has been developed with the help of carers, and will take approximately 30 minutes to complete. The questions will explore how well carers have adjusted to their new caring role and whether they have found new purpose and meaning from their caring role.

Here's the link to the study: https://lancasteruni.eu.qualtrics.com/jfe/form/SV_29RSdszkpqCefbM

See more information on the study website:  https://carerrecovery.wordpress.com

If you would like to talk to someone about the study, please email: askaboutresearch@sussexpartnership.nhs.uk

We’re looking for family members or friends who support someone living with dementia at home to test whether a new intervention (DREAMS START) can reduce the sleep difficulties experienced by people living with dementia.

If DREAMS START is helpful, we hope to make it available to everyone after the study.

More information on the study is available here.

We all use technology in our daily lives and so the 'Minder' study is looking at how we could harness it to monitor our health and assist the way we live.

‘Minder’ is a survey of your thoughts and perceptions of medical devices (technology which is used to diagnose, monitor, or treat a health condition). We are interested in hearing from everyone over 18, those who have and those who haven’t had experience with medical devices.

The online survey takes 10 minutes to complete. For more information and to take part please click here  

When asked, “How did you hear about this survey?” Please select Sussex Partnership NHS Foundation Trust.

Sussex Partnership NHS Foundation Trust is delighted to be part of a study exploring a new and inexpensive dementia screening tool in the NHS to improve identification and diagnosis of dementia.

It’s is a quick and easy to use test of cognitive performance, using an iPad. Patients who have been referred to NHS memory clinics will be asked to take the ICA, as well as all of the other standard assessments taken as part of their appointment. 

Dr Naji Tabet, Lead at our Dementia Research Unit and Centre for Dementia Studies, was filmed demonstrating the ADePT (Accelerating Dementia Pathway Technologies) tool on the BBC tech show Click which aired 15/05/2021. You can catch the episode on BBC iPlayer here and we are featured at about 21 minutes in).

Would you like to find out more? Please contact us by emailing: dementiaresearchunit@sussexpartnership.nhs.uk

SlowMo is an evidence-based digitally supported therapy for paranoia, which combines face-to-face brief therapy with interactive technology. 

Using a mobile app, People learn to slow down for a moment using personalised safer thoughts which helps people feel safer in daily life.

Therapy was focussed on helping people to become aware of and change fast thinking habits which our previous research has shown to contribute to paranoia. 

This eight week therapy is assisted by an app downloaded onto a mobile phone. Therapists work with the person to identify their worries, and then help them find ways to slow down and take a moment when they notice their worries. If people can use the app to slow down and take another look at the situation, they can often realise that things aren’t as bad as they first feared or find other ways to manage their worries.

The results indicated that the treatment was effective, in part, by helping people to slow down their thinking and worry less. SlowMo’s clinically worthwhile results, extremely high satisfaction from people receiving the therapy, strong therapy fidelity and innovative technology means it is suitable for rolling out in the NHS. It will be used in our new SlowMo Clinic to optimise and implement SlowMo so more people can benefit from this new therapy in the NHS.

Thanks to Angie Culham who took part in SlowMo and is working with Kathy Greenwood to help share the promising feedback.  

Read more in the Worthing Herald