Attachment 2

VISION 2020 UK Dementia and Sight Loss Committee

Minutes of Meeting, 29/06/16, 13:00-15:00 in the Lecture Theatre at The RoyalCollege of Ophthalmologists, 18 Stephenson Way, London, NW12HD

Present:

PUPaul Ursell (Chair), The RoyalCollege of Ophthalmologists

DGDawne Garrett, Royal College of Nursing – teleconference

GJGemma Jolly, Alzheimer's Society

KDDr Kapila Sachdev, The RoyalCollege of Psychologists

MBrMatt Broom, VISION 2020 UK

MJMercy Jeyasingham, VISION 2020 UK

PHPaul Hartley, Blind Veterans UK

In Attendance:

TKTayyaba Kamal (Secretary), VISION 2020 UK

Apologies:

Claire Roberts, NHS England West Midlands

Jennifer Brower, ABDO

Jo Lawson, RNIB Cymru

Julie McCarthy, Blind Veterans UK

June Neil, RNIB Scotland

Marilyn Bentham, Wilberforce Trust

Martin Cordiner, College of Optometrists

Dr Sebastian Crutch, UCL

1.Welcome, introductions and apologies for absence

  • All were welcomed to the meeting, especially new members DG, KS and PH. Introductions were given.
  • Apologies were read out.

2.Minutes of the last meeting and matters arising

  • The minutes were approved.

Matters arising:

  • PU mentioned The Royal College of Ophthalmologists (RCOphth's) guidance ( has been downloaded 117 times from their website.
  • Item 2, Matters arising:
  • MBr chased Jo Lawson again for an update on RNIB Online Today project but has not had a response. MBr spoke to Ceri Jackson, Head of RNIB Cymru who has invited MBr to Wales.
  • MBr chased Jo Lawson again for links [Accessible healthcare standards for Wales end of year 1 report 2015] to be disseminated to all but has not had a response. MBr spoke to Ceri Jackson, Head of RNIB Cymru who has invited MBr to Wales.
  • Item 3, Update on DaSLIG cognitive screening factsheet: Mini Mental State Examination (MMSE) factsheet was being updated by Suzy England before she left but has not been completed. We need to ensure this is updated. Other assessments are more popular, i.e. Montreal Cognitive Assessments , Rowland Universal Dementia Assessment Scale (RUDAS).
  • Item 4, Feedback from recent events: PU to write to Dr H Henfry and invite to present the document (Ophthalmology Pre-Assessment Clinic as a Resource in the Identification of Patients with Dementia or Memory Impairment: A Quality Improvement Initiative) at RCOphth.
  • Item 7, Research roundup: MBr to check with the following organisations if they are funding any dementia related research and add links to them on the microsite:
  • Alzheimer's Society
  • Dementia centres
  • Economic and Social Research Council
  • King's College London
  • Medical Research Council
  • National Institute for Health Research
  • NewcastleUniversity
  • Thomas Pocklington Trust
  • UniversityCollege of London
  • University of Stirling

Actions:

2.1MBr to arrange visit to RNIB Cymru to inform them of the work we are doing and inform them we are interested in their work.

2.2PU to write to Dr H Henfry to present the ‘Ophthalmology Pre-Assessment Clinic as a Resource in the Identification of Patients with Dementia or Memory Impairment: A Quality Improvement Initiative’ document at RCOphth.

2.3MBr to circulate MMSE factsheet to all to ensure it is up-to-date and is still useful.

2.4MBr, GJ, KS and SC to check with the following organisations if they are funding any dementia related research so they can be added to the microsite:

  • Alzheimer's Society (GJ)
  • Dementia centres (MBr)
  • Economic and Social Research Council (MBr)
  • King's College London (SC)
  • Medical Research Council (MBr)
  • National Institute for Health Research (MBr)
  • NewcastleUniversity (SC)
  • RoyalCollege of Psychiatrists (KS)
  • Thomas Pocklington Trust (MBr)
  • UniversityCollege of London (SC)
  • University of Stirling (SC)

3.Design work with the Design Council – similar project for DaSLC as done with Arthritis UK (PU)

  • Last year, Arthritis UK worked with the Design Council to produce inventions to assist those with arthritis – .
  • It was agreed that it was a good idea for the committee to do something similar for those with dementia and sight loss.
  • We would have to have research in the area that we want the Design Council to produce an invention for.
  • DG mentioned she does a lot of work with carers so she can ask them about the problems they encounter that can be addressed by a new product. KS can also speak to her sensory loss team. Everyone else should also got back to their organisations and ask the same question.
  • PU suggested this question can also be asked at the SightVillage conference and a brief can drawn up at the end of the conference.
  • Areas discussed for inventions to help include:
  • steps and kerbs (help with depth perception);
  • bath tub (help with depth perception);
  • keys (finding misplaced objects); and
  • glasses (wearing the right glasses for specific activities).
  • It was highlighted that an adaptation of a familiar object would be more helpful for those with dementia rather than creating a new product.
  • MJ mentioned TPT might fund this.
  • It was highlighted that it would be useful to find out more from Arthritis UK about the outcomes of their work with the Design Council.

Actions:

3.1PU to speak to his friend to find out more about the outcomes of Arthritis UK’s work with the Design Council.

3.2DG to find out from her carer contacts, KS to speak to her sensory loss team and everyone else to get back to their organisation to ask about the problems dementia patients with sight loss encounter whichcan be addressed by a new product.

3.3PU, MBr, JG, DG, PH and anyone else attending the SightVillage conference to draft a brief for the Design Council at the end of the conference.

4.Sense cog study (GJ)

  • GJ mentioned Josh Woods is a researcher on the new Sense-cog study that is being carried out across Europe – . He is keen to get input from the committee.

Actions:

4.1All to send comments to Josh Woods on the Sense-cog study at

5.Factsheet for Wearing Glasses with Dementia

  • Jennifer Brower’s factsheet for Wearing Glasses with Dementia was discussed.
  • The following amendments to the factsheet were agreed:
  • shorter (1.5 pages maximum);
  • remove medical terms to make it easier to read for lay people;
  • contacts to include organisations that provide glasses not dementia organisations or sight loss organisations; and
  • removal of end paragraph about the committee but keep statement about the factsheet being produced by the committee.

Actions:

5.1JB, MBr, NiallRyan and GJ to update the factsheet for Wearing Glasses with Dementia.

6.Workplan

  • The workplan was reviewed and it was agreed it should be updated with work discussed at this meeting and the previous meeting.

Actions:

6.1TK to update workplan with work discussed at this meeting and the previous meeting.

7.Feedback from recent events (All)

Alzheimer's Society and VISION 2020 UK (GJ / MBr / Mary Bairstow)

  • GJ and MBr were invited to the See and Hear Shropshire Exhibition 2016, 11 May 2016 inShrewsbury. The exhibition was advertised as a national event but delegates found the local information more useful.
  • Mary Bairstow, National Development Manager, VISION 2020 UK attended The College of Optometrists annual Optometry Tomorrow 2016 Gala Dinner in March 2016.

The Royal College of Nursing (DG)

  • DG attended a joint Royal College of Nursing and Geriatric conference in spring.

The RoyalCollege of Psychiatrists (KS)

  • KS attended the Dementia 2016 conference.
  • This conference is mainly for medical professionals.

8.Plans for presence at 2016/17 events

  • PU stated we need to find out about conferences being held next year and ensure we are invited to these. MJ mentioned we also need to influence the programmes.
  • GJ stated there is an overlap with the conferences in the hearing loss sector.

VISION 2020 UK (MBr / MJ)

  • College of Optometrists Congress – MJ will ask Jo Mullin, Director of Policy and Strategy about us having a presence there next year.
  • Dementia Congress – MBr and GJ to look out for 2017 details.
  • Prime Minister’s Champion Group on Dementia Friendly Communities – Annual Meeting 2016, 30 June 2016 – MBr is attending tomorrow.
  • SightVillage conference, 19 July 2016 inBirmingham –
  • NHS has offered VISION 2020 UK space at the conference for a programme and offered to pay for speakers expenses.
  • Free tickets issued for this programme. Morning session is fully booked and there are approximately 10 places remaining for the afternoon session.
  • PU suggested we should apply for CPD.
  • MBr has created a programme for the day in order to raise awareness and present solutions. The following was agreed:
  • Presentation times to be reduced to allow for questions before the break as well as at the end of the session.
  • Questions can also be tweeted.
  • Tweets to be sent during the conference.
  • PU suggested certificates of attendance be produced which can be issued after feedback forms have been completed.
  • Handout to be given with overview and a link to the website to view presentations.
  • There will be a stand at the conference and also a VISION 2020 UK stand downstairs so anyone can send materials they would like to share.
  • Outputs from the conference will include:
  • video of the conference which will go on the VISION 2020 UK website;
  • feedback from the event;
  • news item in VISION 2020 UK weekly newsletter; and
  • article for Journal of Dementia Care who GJ mentioned would like to find out more about DaSLC.

Actions:

8.1All to investigate conferences (including hearing loss sector) running in 2017 to ensure we are invited to these and can influence the programmes.

8.2MJ to ask Jo Mullin, Director of Policy and Strategy, The College of Optometrists about us having a presence at next year’s Congress.

8.3MBr and GJ to look out for details on the Dementia Congress for 2017.

8.4MBr to email Beth Barnes, RCOphth to apply for CPD for the SightVillage conference.

8.5MBr to update programme to include questions prior to refreshment breaks and shorten presentations.

8.6MBr to re-send instructions to speakers informingthem of changes (presentation times reduced) and ask them to email him presentations beforehand.

8.7MBr to draft questions for feedback.

8.8MBr to draft handout with overview and a link to the website to view presentations.

8.9All to contact MBr if they would like to send materials for the conference stands or would like to attend the conference if tickets are sold out.

Alzheimer's Association International Conference (AAIC) 2017

  • AAIC is held annually in July and in 2017 it will be held in London.
  • Submissions for the conference will take place in February 2017.

Actions:

8.10GJ to check information about AAIC and how we can be involved. GJ to feedback at the next meeting.

9.Research roundup (All)

The College of Optometrists (Email from Martin Cordiner circulated during the meeting)

  • PrOVIDe: The Full Report was scheduled to be published online on 23rdJune, but was not, due to delays in the final proofing. It is now likely to be published within the first couple of weeks of July.
  • The report of the Visual Impairment and Dementia Summit held back in February 2015, to discuss the priorities for research relating to living with both dementia and visual impairment, has been published and is availablehere. We also issued a pressreleaseabout it. If anyone would like to discuss the report or anything relating to it further then please feel free to get in touch.
  • OurDementia: Which test is best?’project (which saw three patients with posterior cortical atrophy each given sight tests by an optometrist, an ophthalmologist and a neurologist, which were filmed, after which the patients and the practitioners were interviewed), is in the process of being written up for publication. We will let you know as soon as this is ready for publication.

10.Updates from members (All)

  • PU mentioned he would like to find out more from Sebastian Crutch about The Hub at Wellcome Collection which is running in October 2016 so that we can get involved and support it.

Actions:

10.1MBr to contact SC to find out more about The Hub at Wellcome Collection and how we can support it.

11.Black, Asian and Other Ethnic Minority communities – a tactical approach

  • VISION 2020 UK are going to look at what we can do and what we should be doing for Black, Asian and Other Minority Ethnic (BAOME) communities. Questions are being compiled for a survey about prevention, eye health, inclusion, rehabilitation etc. Suggestions for questions to go in the survey can be sent to Mercy Jeyasingham.
  • Issues highlighted include:
  • access to information – some communities prefer written information rather than face-to-face meeting;
  • language – people with dementia lose the ability to speak a second language so those with English as a second language can no longer speak English;
  • translation – there is no word for ‘dementia’ in some languages;
  • attitude – it is thought in some communities dementia is just old age.
  • DG offered to run any questions or issues MJ has about BAOME to RCN’s Equality and Diversity team.

Actions:

11.1All to send questions especially around dementia and sight loss for the BAOME survey to MJ at

12.Review of membership, documents, notices to be posted

Membership

  • Age UK – MJ mentioned she has a meeting with Caroline Abrahams. GJ offered to find out if they have a lead person for dementia.
  • Dementia UK – GJ has not had a response.
  • General Practice – GJ invited Jill Rasmussen who has agreed to join the committee.
  • Neurology – SC had agreed at the previous meeting to contact the Association of British Neurologists.
  • Nursing – GJ invited Dawne Garrett who has joined the committee and is present today.
  • Optometry – it was stated that it would be good to have more involvement from The College of Optometrists.
  • Occupational Therapy – GJ offered to try to recruit someone.
  • Psychology – SC is a member of the British Psychological Society.
  • RNIB
  • MBr spoke to Catherine Dennison who will sadly not be re-joining the committee.
  • MBr stated Julia Barrand will not be replaced.
  • Thomas Pocklington Trust – MBr contacted TPT who have said they will not be replacing Suzy England.

Actions:

12.1GJ to contact Age UK to see if they have a lead person on dementia who can join the committee.

12.2GJ to follow up with Dementia UK.

12.3GJ to invite an occupational therapist to join the committee.

12.4SC to contact the Association of British Neurologists.

Terms of Reference

  • The Terms of Reference were agreed.

13.AOB

a)Postcards for eye tests (MBr)

  • MBr mentioned the VISION 2020 UK Learning Disability Committee produced postcards and stickers to encourage sight tests for children with special needs –
  • An adult version is being produced which MBr will circulate to the committee.

Actions:

13.1MBr to circulate to all adult version of postcards encouraging sight tests once completed.

14.Date of next meeting

  • 28 September 2016, 1300-1500, Meeting Room 5, RNIB

Actions:

14.1TK to contact The College of Optometrists to book a room for the next meeting.

Item / Action / Member
2.1
2.2
2.3
2.4 / Matters Arising
MBr to arrange visit to RNIB Cymru to inform them of the work we are doing and inform them we are interested in their work.
PU to write to Dr H Henfry to present the ‘Ophthalmology Pre-Assessment Clinic as a Resource in the Identification of Patients with Dementia or Memory Impairment: A Quality Improvement Initiative’ document at RCOphth.
MBr to circulate MMSE factsheet to all to ensure it is up-to-date and is still useful.
MBr, GJ, KS and SC to check with the following organisations if they are funding any dementia related research so they can be added to the microsite:
  • Alzheimer's Society (GJ)
  • Dementia centres (MBr)
  • Economic and Social Research Council (MBr)
  • King's College London (SC)
  • Medical Research Council (MBr)
  • National Institute for Health Research (MBr)
  • NewcastleUniversity (SC)
  • RoyalCollege of Psychiatrists (KS)
  • Thomas Pocklington Trust (MBr)
  • UniversityCollege of London (SC)
  • University of Stirling (SC)
/ MBr
PU
MBr / ALL
Completed
MBr / GJ / KS / SC
3.1
3.2
3.3 / Design work with the Design Council – similar project for DaSLC as done with Arthritis UK
PU to speak to his friend to find out more about the outcomes of Arthritis UK’s work with the Design Council.
DG to find out from her carer contacts, KS to speak to her sensory loss team and everyone else to get back to their organisation to ask about the problems dementia patients with sight loss encounter which can be addressed by a new product.
PU, MBr, JG, DG, PH and anyone else attending the SightVillage conference to draft a brief for the Design Council at the end of the conference. / PU
DG / KS / ALL
PU / MBr / JG / DG / PH
4.1 / Sense cog study
All to send comments to Josh Woods on the Sense-cog study at / ALL
5.1 / Factsheet for Wearing Glasses with Dementia
JB, MBr, Niall Ryan and GJ to update the factsheet for Wearing Glasses with Dementia. / JB, MBr, Niall Ryan / GJ
6.1 / Workplan
TK to update workplan with work discussed at this meeting and the previous meeting. / TK
Completed
8.1
8.2
8.3
8.4
8.5
8.6
8.7
8.8
8.9
8.10 / Plans for presence at 2016/17 events
Allto investigate conferences (including hearing loss sector) running in 2017 to ensure we are invited to these and can influence the programmes.
MJ to ask Jo Mullin, Director of Policy and Strategy, The College of Optometrists about us having a presence at next year’s Congress.
MBr and GJ to look out for details on the Dementia Congress for 2017.
SightVillage
MBr to email Beth Barnes, RCOphth to apply for CPD for the SightVillage conference.
MBr to update programme to include questions prior to refreshment breaks and shorten presentations.
MBr to re-send instructions to speakers informing them of changes (presentation times reduced) and ask them to email him presentations beforehand.
MBr to draft questions for feedback.
MBr to draft handout with overview and a link to the website to view presentations.
All to contact MBr if they would like to send materials for the conference stands or would like to attend the conference if tickets are sold out.
Alzheimer’s Association International Conference
GJ to check information about AAIC and how we can be involved. GJ to feedback at the next meeting. / ALL
MJ
MBr / GJ
MBr
Completed
MBr
Completed 01/07/16
MBr
Completed
MBr
Completed
MBr
Completed
ALL
GJ
10.1 / Updates from members
MBr to contact SC to find out more about The Hub at Wellcome Collection and how we can support it. / MBr
11.1 / Black, Asian and Other Ethnic Minority Communities – a tactical approach
All to send questions especially around dementia and sight loss for the BAOME survey to MJ at . / ALL
12.1
12.2
12.3
12.4 / Review of membership, documents, notices to be posted
Membership
GJ to contact Age UK to see if they have a lead person on dementia who can join the committee.
GJ to follow up with Dementia UK.
GJ to invite an occupational therapist to join the committee.
SC to contact the Association of British Neurologists. / GJ
GJ
GJ
SC
13(a1) / AOB
Postcards for eye tests
MBr to circulate to all adult version of postcards encouraging sight tests once completed. / MBr
14.1 / Date of next meeting
TK to contact The College of Optometrists to book a room for the next meeting. / TK Completed – No room available. Room booked for Nov 16.

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