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The existing service has enjoyed considerable success, with approximately 60,000 people currently registered, over 10,000 new volunteers in the last year. Volunteers have been involved in a range of studies which have helped improve quality of life and led to some promising pharmaceutical breakthroughs.

Over recent weeks we have discussed the service with people living with dementia and their families, as well as charities, government organisations, researchers and other stakeholders.

This feedback is helping us to understand the current challenges facing users and researchers and how to ensure the service works for them. We are working on a blueprint for an improved dementia research service which will be tested and refined over the coming months.

We are continuing our commitment to involving people with dementia in the design process and to ensure research remains as accessible as possible to people living with the condition. Ultimately, the work should enable more high-quality dementia research to take place through the service and enable more people to actively take part.

We are grateful for the continued support Join Dementia Research receives from the care home community, residents, and their families and friends.

Join Dementia Research stories:

Please encourage your residents and their families and friends to sign up to Join Dementia Research.

“Research found that the virtual reality therapy required less therapist time than usual care, and could be delivered by staff with no experience of delivering talking therapies.

People with psychosis have lost some contact with reality. They may see or hear things that other people do not (hallucinations), or believe things that are not true (delusions). Almost 2 in 3 people with psychosis also struggle with agoraphobia. They can be helped by talking therapies but there is a shortage of trained therapists. This study assessed whether virtual reality could be used to deliver effective therapy.

The researchers worked with people with lived experience of psychosis to develop the virtual reality therapy. Those receiving the treatment wore a virtual reality headset, and explored an electronic version of an everyday situation they found distressing (getting on a bus or visiting the doctor, for instance).

All participants in this study received usual care (prescribed medications, regular visits from a community mental health worker and occasional outpatient appointments with a psychiatrist). Half received virtual reality therapy in addition. The study found that the virtual reality therapy generally had a positive impact. People in the group who received it were less likely to avoid situations they found uncomfortable, and were less distressed. Those with severe agoraphobia described lasting benefits.”

Read more here 

‘We are looking for anyone who is or has been a Registered Nurse and is or has been working in Adult Social Care (or working in a sector closely related to social care). In the study we are looking at why Registered Nurses join, stay or leave working in the social care sector with an aim to improve recruitment and retention of Nurses by understanding their individual experiences of working in this sector.

The study was commissioned by the Department for Health and Social Care.

A £20 shopping voucher is offered as thanks for taking part in an interview.

More information can also be found here: https://www.kcl.ac.uk/research/registered-nurses-in-adult-social-care .  If you’d like to take part, or would like to know more, please contact the lead researcher Nicole Steils at nicole.steils@kcl.ac.uk.

“COVID-19 was a devastating event for the social care system in England and affected so many people who draw on, provide and organise care and support. Now that we have entered a new phase of managing this pandemic, it is important that lessons are learnt about what could be improved for the future. There is a window of opportunity to reflect on what happened in the English social care system but also to learn from other countries about what helped and hindered their response.

The Care Policy and Evaluation Centre (CPEC) at LSE and the Nuffield Trust have been carrying out the Social Care COVID Resilience and Recovery project funded by the National Institute for Health and Care Research to inform policy and practice as the social care sector in England recovers from COVID-19, and to put the sector on a more resilient footing for the longer-term.

This series of four webinars will reflect on what England should learn from the experiences of social care systems in Japan, France, Denmark and the Netherlands during COVID-19. In each webinar we will consider how resilient the system was going into COVID-19, how prepared it was in the face of COVID-19 and what changes it is now planning to make to strengthen social care for the future.

For more details please see: https://ltccovid.org/2023/02/07/webinars-what-can-the-english-social-care-sector-learn-from-the-netherlands-denmark-japan-and-france-to-recover-from-the-covid-pandemic-and-become-more-resilient/

“Elizabeth Hancock, a Manager at Fulford Nursing home, gives her perspective on why it’s important for Care Homes and Nursing Homes to get involved in research.

In this three and a half minute video, Elizabeth describes some of the research studies she’s been involved with and outlines the benefits this has had for her residents, staff and her organisation.

For further information contact: art.researchengagement.crnyorkshumber@nihr.ac.uk

Link to video: https://www.youtube.com/watch?v=VYYqOlSs9bo

“The most exciting development for Alzheimer’s research in recent months has been the CLARITY-AD study results. CLARITY-AD has been investigating the drug lecanemab, which is the first drug to slow cognitive decline in people with early-stage Alzheimer’s disease.

Join Dementia Research volunteers helped to make these findings possible by taking part in the UK clinical trials. Regulatory approval is now being sought for the drug to be prescribed in the US and Europe.

Some of the many studies currently recruiting through Join Dementia Research include:

The Join Dementia Research service now has 60,000 volunteers signed up to take part in research. This is really positive, but we always need more people to join us to help make research breakthroughs possible. So please encourage your residents and their families and friends to sign up for Join Dementia Research.”

“The SUSTAIN project aims to help carers develop their knowledge, skills and confidence in supporting people living with multiple conditions.

Older adults with higher care needs require the most support with managing their joint pain and additional conditions, but are currently the least likely to be able to access support. Many older adults with joint pain living in care settings have degrees of cognitive impairment. This is often seen as a barrier to older adults self-managing their conditions, without considerable support from carers.

We would like to interview care staff about their experiences of caring for older people with multiple long-term conditions, to find out what matters most, their challenges and how they feel about their role. We will then compile a short film from the interviews which will be shown to other carers and people working in the care sector. This will be used to help us co-design new training and support that people want and need.

The interviews and co-design groups will all be held online (e.g via Zoom) and should last no longer than 90 minutes. Everyone will receive a £25 gift voucher for taking part.

If you are interested and would like more information, please contact Dr Kate Button on buttonk@cardiff.ac.uk or 02920687734.”

“Respiratory infections such as COVID-19, coughs, colds and flu are more serious in older people. In care homes, infections can spread easily in shared spaces when people breathe in air containing germs passed on by people coughing and sneezing.

This study aims to find out whether portable high-efficiency particulate air (HEPA) filters can reduce symptoms of respiratory infections in care home residents during the winter period. Although we know they trap airborne particles, no one has tested if they can improve human health.

The AFRI-c Study website provides further information and an expression of interest form for care homes.”

 

This study is funded by the National Institute for Health Research 

The British Society of Gerontology Annual Conference is being hosted by the University of East Anglia, Norwich, UK on 5-7th July 2023.

Abstract submission closes soon (27th January).

Plenary Speakers: Adelina Comas-Herrera, Aravinda Meera Guntupalli, Karl Pillemer  Find out more here

Streams include:

  • Hearing older people’s voices
  • Cultural ageing; Ageing in the community
  • Ageing at a time of global crisis
  • Technology and social interventions for independence, support and care
  • Ageing in urban and rural spaces
  • Empowering and supporting people moving to end-of-life

Please do consider submitting your research abstract to this vibrant and friendly conference.  Submit your abstract here

Find us on Twitter: @bsg2023

“The first days of statutory integrated care systems: born into a storm

On 1 July 2022, integrated care systems (ICSs) finally arrived in statutory form, some five years after their initial conception through the first of the sustainability and transformation plans.

ICSs are partnerships that bring together NHS organisations, local authorities and others to take collective responsibility for planning services, improving health and reducing inequalities across geographical areas. There are 42 of them in England. They stem from a recognition that the traditional barriers between GPs, hospitals and community services, between physical and mental health, and between health and social care need to be broken down to provide care that is much better integrated. So that people with multiple health conditions, not just single diseases, are better supported. Integral to the concept is that a much stronger emphasis needs to be placed on prevention, on population health and on tackling socio-economic inequalities and the health consequences that flow from them – things that neither local authorities, nor the NHS can achieve on their own, even when working with the voluntary, community and social enterprise (VCSE) sector.

Following the 2022 Health and Care Act, what in most places was a single non-statutory partnership board for an ICS has been replaced by two statutory parts: an integrated care board (ICB), responsible for NHS services but with much wider duties, and a statutory integrated care partnership (ICP), convened by local government and the NHS, which brings together local authorities, the VCSE sector and others concerned with health and wellbeing to develop a health and care strategy for the ICS. ICPs have until December to produce a draft of these strategies, which the ICB will be required by law to take into account when commissioning and delivering NHS services. And the near alliteration between an ICB and an ICP operating as part of an ICS does not making explaining any of this to non-specialists easy, especially verbally. “

 Read more at: https://www.kingsfund.org.uk/publications/first-days-statutory-integrated-care-systems”

Authors: Nicholas Timmins, Chris Naylor, Anna Charles