Join Dementia Research at the 6th National Memory Services Forum
Join Dementia Research were at the 6th National Memory Services Forum at the end of September. The Forum is organised by the Memory Services National Accreditation Programme (MSNAP), who work with services to assure and improve the quality of memory services for people with memory problems / dementia and their carers.
The Forum saw over 150 delegates attend, and included presentations by key professionals working in the dementia field.
National Clinical Director of Dementia in England
* Improvements in health and care
* Raising awareness – such as through Dementia Friends and Dementia Friendly communities
* Better research
The MSNAP team gave an update of their activities, drawing attention to their 3rd National Report (published at the beginning of the year), looking at key themes in 2013‐14:
- Average of 6.1% patients registered their interest in participating in research
- Approx ¼ of patients accessed psychosocial interventions
- Clinics more likely to provide, or have access to Cognitive Stimulation Therapy than other psychosocial interventions (88%)
Comparing 2011-12 data to 2013-14 data, there were improvements in case note audits, with a 10% increase of patients contacted within 3 weeks of referral (from a GP to a memory service) (from 81 % to 91%) and patients who began a memory assessment within 6 weeks of a referral increasing from 79% to 80%.
Based on the audit data, MSNAP’s recommendations are for memory services to:
* Improve relationships with referrers
* Focus on psychosocial interventions
* Ensue carers’ assessments are offered
* Create links with research organisations and actively promote these to people with dementia
Dementia research: A national perspective
Professor John O’Brien, Foundation Professor of Old Age Psychiatry, University of Cambridge School of Clinical Medicine then gave a national picture dementia research.
He underlined some of the calls to action in the Prime Minister’s Challenge on Dementia 2020:
- England to be the best place in the world to undertake dementia research
- 25% of people with diagnosed dementia on Join Dementia Research
- 10% participating in research (up from 4.5%)
- On track for cures or disease modifying therapies by 2025
John also explained three examples of national dementia research initiatives:
- Dementias Platform UK (DPUK): a shared informatics platform bringing together 22 cohorts (more than 2 million people) including symptomatic and “at risk” participants
- Translational Research Collaboration in Dementia (TRC-D): engaging NHS and industry to advance dementia research
- Clinical Records Interactive Search (D-CRIS): a resource enabling large pseudonymised patient datasets to be pooled so that dementia research can be conducted at scale, enabling researchers to identify trends in data and investigate why treatments work for some patients and are not as effective for others
John also stressed the diversity of dementia research studies open to the public today, including these studies on Join Dementia Research:
and stressed the greater need than ever to discuss research to people during assessments at memory services.
John also emphasised that by memory services highlighting Join Dementia Research to people using the services they are meeting two of the MSNAP standards for accreditation:
The afternoon sessions saw parallel presentations including Post-diagnostic support: effective psychological interventions, Psychosocial interventions, Communicating a diagnosis of dementia and My House of Memories, which uses museum archives to help people with dementia recollect their memories.
Louise Marks of Carers Trust also spoke about supporting carers of people with dementia, highlighting local online and phone services and an online forum where carers can chat to one another.
Louise also revealed that 670,000 family members and friends act as primary carers of people with dementia and stressed the importance of:
– recognising the role carers are doing
– getting them the support they need
– carer assessments to be reviewed (as circumstances change)
Louise also drew attention to the Making the Road Less Rocky for Carers toolkit – a guide for supporting carers of people with dementia.
So what can memory services do to help achieve their research standards?
We encourage accredited memory services to visit the Join Dementia Research website, and sign-post interested patients to either register online (www.joindementiarsearch.nihr.ac.uk) or via the charity helpline numbers: Alzheimer Scotland: (0808 808 3 000), Alzheimer’s Research UK (0300 111 5 111) or Alzheimer’s Society (0300 222 1122).
A range of promotional materials (such as leaflets, application forms and posters) can also be ordered online: http://weborder.formara.co.uk/jdr.
Please contact firstname.lastname@example.org if you would like advice on how you can help to support the service in your clinic.