RNIB Evidence & Service Impact

Notes of the Dementia and Sight Loss Interest Group meeting on 6 June 2011

1.0 Welcome and Introductions Action

1.1 Attendees 1.1.1 Sarah Buchanan (SB) – Thomas Pocklington Trust (TPT) - Chair Rebecca Sheehy (RS) - RNIB Linda Lawson (LL) – Alzheimer’s Society (AS) Amanda Reeves (AR) – Macular Disease Society Paul Ursell (PU) - Consultant Ophthalmic Surgeon Ben Cavanagh (BC) Alzheimer’s Society (AS) Lucy Smith (LS) - College of Optometrists Eleanor Ogilvie (EO) - RNIB Chris Smith (CS) – RNIB – Minutes secretary

1.2 Apologies 1.2.1 Apologies received from Pam Turpin (ARUP), Matthew Athey (RNIB), Clive Evers (AS) and Philippa Simkiss (RNIB).

Due to time constraints, it was agreed at the meeting that the agenda order be changed.

3.0 Research

3.3 Cataracts and Dementia - Paul Ursell 3.3.1 Background

PU became involved with the group following meetings with Fazilet Hadi and his work with SeeAbility. A key area of interest is the impact of removal of cataracts on the lives of people with dementia. There has been a view that a general anaesthetic would impair logical functioning and that administering drops would be problematic. Modern cataract surgery (lasting approx 10 mins), which removes the need for/or less reliance on glasses, may increase conceptual function, quality of life, safety as well as improving vision.

PU is a facilitator in this area of Ophthalmology. A need for research has been identified but timescales for efforts to take this forward need to be co-ordinated to include a literature review to identify research questions and methods.

PU suggested that as a research programme may be time- consuming, a more direct approach would be to raise awareness of sight loss issues facing people with dementia among the Ophthalmology and Optometry communities and support such work with case studies.

The anecdotes that may have informed not taking action on cataracts among people with dementia may reflect hearsay and in some cases perhaps, that surgery may have been late in the stage of both the cataract and the stage of dementia and health of the person. Surgery when dementia has progressed may make it difficult to measure change in vision, the impact on cognitive function and quality of life.

Core indicator tests show that there are side effects to some treatments but the cost benefits of cataract operations is high.

3.3.2 Creating awareness

Creating awareness of preventative steps in eye care, at an early stage in the development of any health condition, will benefit people in terms of their confidence and therefore a KPI would be to ensure people have regular eye tests. BC expressed an interest in receiving current research papers. Action: PU to forward details PU

Quality of after care following a general anaesthetic and surgery may be an area of concern for people with dementia.

People living in care homes may not always be advised to see an Optometrist for an eye test. Some care homes may assume visual symptoms/problems are linked to the dementia and not attributed directly to the sight loss. The following information / suggestions / improvements could be taken into consideration:-  Better access to eye tests. Clarity of recommended periods between appointments (one year or two; but always if there has been significant change in vision)  Referrals to Ophthalmology regardless of dementia or other health conditions  Programmes of treatment that include support for people with other health conditions  An assertive approach to challenging some misconceptions about dementia and surgery (such as assessing any risk to quality of life and whether a proxy should be involved in the decision making process)  The College of Optometrists has issued guidelines on eye examinations of people with dementia. Good practice experiences suggest that longer appointments and sometimes two optometrists are helpful and this will increase costs  Commercial optometrists may seek to charge an enhanced fee for people with dementia (as happens to people who have a learning disability)

The International Longevity Centre is due to issue a report shortly about eye examinations in care homes. The content could offer a platform / pathway for DaSLIG to prepare an awareness campaign addressing people / roles, structures, outcomes and interventions, and that marshals available evidence including that related to preventative eye care in the general population. Action: SB to research SB

3.3.3 Factsheets

DaSLIG should consider producing documents and/or factsheets with contents as outlined above to raise awareness around:-  Visual perception difficulties (build on AS factsheet)  Sight loss prevalence in relation to dementia (does this need new / more research?  Action: AS – BC - to consider BC  Sight loss in Alzheimer’s / other dementias  The importance of early interventions (build on RNIB generics)  Dual sensory loss and dementia (with Sense?)

Ideally this would be a co-ordinated approach on the lines of work by SeeAbility. There is a problem in that DaSLIG has no resources of itself and relies on members doing things individually for collective benefits.

3.1 NIHR - Royal College of Optometrists bid

3.1.1 The College has submitted a bid to the National Institute of Health Research to conduct a review of the experience of eye examinations among people with dementia. The aim is to use findings to inform advice for good practice. If the bid is unsuccessful alternative sources of funding will be examined. STOP PRESS: the bid got through the first round….. 3.2 Moorfield's and Institute of Ophthalmology (IO)

3.2.1 Moorfield's and IO are providing support to other organisations to complete bids for projects around Alzheimer's and other conditions including sight loss.

In conjunction with Victor Chang there are also other areas of interest to DaSLIG.

4.0 DOCET - Lucy Smith 4.1 Background

 LS is the DOCET co-ordinator based at the College of Optometrists  DOCET was set up in 1989 by DoH to oversee the management of funds for the training of Optometrists including the distribution of distance learning training materials  Priorities included ongoing communications and in 2009/2010 dementia was a top issue as Optometrists had a degree of uncertainty about the condition  Due to time constraints we were unable to have a look at a DVD containing some specific training subject matter. This information can also be provided in alternative formats  The information is available via the College website

4.2 Training content

4.2.1 As a follow up to the DVD there will be some factual information added including dementia and sight loss experiences and case studies (real life interviews), patients eye view, eye disturbances and hallucinations – the range of the condition.

4.2.2 Guidance for Optometrists with clients who have dementia will be produced including :-  How to prepare someone for an eye examination  Eye examination techniques  The importance of eye care  Prescribing glasses (or referral) and advice on how to use them  Home visiting

4.2.3 Optometrists (approx 11,500 membership of the College) can earn professional development points for completing the online course materials. It is envisaged the above will be available at the end of July 2011. 4.2.4 Information held on the website is open for download by the membership, prior to archiving, for a period of a year. After this time it is open to others. Resources would contain information about the work of DaSLIG and Vision 2020 signposting people to the microsite and AS and reciprocal links Actions: LS to send final version to group. LS CS to circulate and inc EO and LL CS Group to view as part of future factsheets and campaigns All material

4.3 Other work of DOCET

4.3.1 LS advised the group of the work being undertaken in conjunction with RNIB Scotland. A DVD has been produced for people with a learning disability and it is recognised that there is a crossover with testing of people who have dementia. Feedback from High St Optometrists had proved to be invaluable.

4.3.2 The College has a good working relationship with Specsavers. It has developed post registration educational materials inc. DVD’s.

4.3.3 Following launch of DVD and feedback gained, the College will (in 2012) investigate continuing professional development around dementia and sight loss. Action: LS to discuss new topics, promotion and publicity for LS the DVD’s

4.4 It was discussed that DaSLIG could consider a ‘training workgroup’. AS has a dedicated training team. Pilot schemes or training at varying levels (intro level etc) aimed at professionals working with people who have dementia and sight loss (and vice versa), care homes/workers accompanied by resources. Other points to consider included the funding of vision assessments to assess the baseline differences in interventions. RS asked whether the information was widely available within RNIB. Action: EO agreed to share project planning materials EO

2.0 Updates on joint working

2.1 Conferences

2.1.1 Three shared posters have been produced. AS, RNIB and TPT have a set each. One is about activity and dementia and sight loss and defined for OT's events (first end June, another end November). One is designed for care homes / services and was used at the national care homes event in July. One is designed for sight loss services and was used at the Vision UK 2011 Strategy event in June. STOP PRESS: we hope to take all three to the Visionary event in October (SB)

2.1.2 Discussion whether DaSLIG should consider a presence at the Carer Conference? Action: SB to liaise with CE SB/CE

2.1.3 Information gathered from Dementia Conference in Dec 10 to be shared on a wider basis, Action: SB to collate SB

2.2 SCIE update

2.2.1 On the SCIE website there is a ‘Dementia Gateway’. The aim is to enhance the website with more accessible information.

At the last mtg Julia Barrand reported that she been asked to provide information for the SCIE site. Action: RS to follow up RS

2.3 Helplines

2.3.1 MA absent from meeting to provide update. Is training complete? Enquiry numbers seem to reduce when we haven't been out and about promoting awareness. Action: RS to contact Helpline team RS

2.4 Statement of Intent

2.4.1 RS advised that no further action had been taken since last set of communications between group members. The aim is to put this statement onto the microsite (and possibly other web sites – RNIB/TPT/AS/MDS) Action: RS to revisit, add-in new suggestions inc eye tests, RS holistic approach to the issues; and complete by end of July

2.5 Microsite

2.5.1 RS presented some more recent statistics for visitors to the DaSLIG microsite provided by Vision 2020. Information that can be provided is limited. 2.5.2 The group agreed that Matt Broom should be invited to he next DaSLIG meeting to discuss how the site can be moved forward in relation to our aims. Action: CS to liaise CS

5.0 Any other business

5.1 RS/CS agreed to obtain the definitive list of events where RNIB will have a presence and at which this group might therefore add some information to RNIB stands and / or define a group presence. Action: CS to contact Martin Shervington (RNIB Marketing) CS Action: Group members to forward their organisation’s Group planned events

5.2 Action: RS to email poster text in PDF to group members RS

5.3 MMSE Action: SB to send round the sight loss accessible MMSE SB identified by S Sorensen (AS)

5.4 Memory clinics Action: BC to check if there is a mailing list BC

5.5 Victor Chang – Ophthalmology Group. Can DaSLIG support as part of Vision 2020 Group? Action: Group to consider Group

5.6 The group agreed that future meetings should be quarterly. The next meeting should be within the first 2 weeks of September (w/c 5th or 12th) Action: CS to arrange CS