Dementia and sight loss
Frequently Asked Questions
This document addresses some of the frequently asked questions that are asked by people affected by dementia and sight loss, their carers, and practitioners in dementia and vision services. The practical advice and information offered throughout this document has not been evaluated and is presented in order to share practical approaches. Feedback and information about other approaches is welcomed.
Q: What are the general principles surrounding services for people affected by dementia and sight loss?
A: Generally, taking a person-centred approach ensures the most comprehensive information, support and advice is offered to those affected by dementia and sight loss.
Q: What are the impacts of dementia and sight loss on someone and how should I approach this?
A: Dementia and sight loss may each cause confusion or disorientation and lead to loss of independence, activities and social contact. Both conditions change and flexibility in response is essential.
One condition may mask or be mistaken for the effects of the other and lead to inaction. For example sight loss may lead to disorientation and confusion and if this is attributed to dementia actions that can make the most of vision (such as improving lighting) may not be taken.
Q: What is the role of diagnosis?
A: Diagnosis is essential:
· Ophthalmologists diagnose the causes of sight loss
· Optometrists examine eyes and assess vision
· Old-age psychiatrists diagnose dementia.
Diagnosis is a first step in defining appropriate interventions.
Q: What is the link between dementia and sight loss?
A: 750,000 people have dementia in the UK, most of whom are over 65 and around 1 in 7 of the over 65s is living with significant sight loss. By the age of 75 at least 2.5% of people will have both conditions. As the population ages, the number of people with both dementia and sight loss will increase. In care homes, studies indicate a higher proportion of residents may have both conditions
Because dementia affects the way we perceive and process information from our eyes, some forms of dementia create apparent sight loss. Eye conditions that cause sight loss and normal ageing of the eye may occur alongside dementia. Whatever the cause of sight loss, very few people have no sight and there are approaches that can make the most of sight.
Q: I work with patients, residents or customers who may suffer from dementia, sight loss or both. How can I better equip myself to support people suffering from these conditions?
A: Visual awareness training for staff working with people with dementia is useful. Information about sight loss, its causes and effects is helpful to family carers and friends.
Dementia awareness training for staff working with older people with sight loss is useful. Information about dementia and its effects is helpful to family carers and friends.
Q: I suspect someone diagnosed with dementia is beginning to lose their sight. How can I be sure?
A: The effects of dementia may disguise sight loss caused by an eye condition, normal ageing of the eye or dementia itself. Check if the person finds it difficult to do any of the following to help you confirm possible sight light loss:
· Recognise people
· Be in bright light, low light or both
· Read facial expressions
· Find things
· Read, or enjoy familiar hobbies
· Manage unfamiliar surroundings
· Locate food on the plate
· Manage current spectacles (perhaps saying “I need new glasses.”)
If you suspect someone with dementia has sight loss then a full diagnosis is essential. A full eye examination, free to eligible people, is available at high street optometrists. People who can’t attend without support may be eligible for an eye examination in their home. Contact opticians, GPs or your PCT for information.
Diagnosis is important as some eye conditions that cause sight loss can be treated to avoid further loss of vision. Knowing what eye condition someone has may give you an idea of the kind of sight loss they have and how best to help them manage with the changes in their vision.
Q: If I suspect someone needs an eye test, how can I organise one?
A: You can arrange a full eye test with your local optician. If mobility or transport is difficult, you could organise a domiciliary eye test.
Each local PCT has a list of providers who have a contract to provide domiciliary eye care in the area (these range from large national companies to small independent companies) and the patient chooses who they would like to be seen by.
Care homes may have a preferred provider, but residents can still choose their own provider, if they wish.
You can find out more about domiciliary eye tests and eligibility on the Vision Matters website: http://www.visionmatters.org.uk/smartweb/sight-tests/at-home
The Eye Health Alliance website is also a very good source of information on the need for sight tests and NHS eligibility:
Q: Are there additional effects on sight loss caused by dementia?
A: Regardless of an eye condition, or normal ageing of the eye, people with dementia may experience visuoperceptual difficulties that reduce their sight, in particular in relation to:
· Colour perception
· Figure: background contrast
· Identifying depth and motion
· Visual acuity
· Recognising objects and faces.
Note that some forms of dementia have particular effects on sight, such as dementia with Lewy Bodies and Posterior Cortical Atrophy.
Q: What are the best ways to practically support people with dementia and sight loss?
A: The following steps can support independence and quality of life among people with dementia and sight loss.
· Make sure the person is wearing the correct glasses for the task they are engaged in reading glasses for close tasks, distance glasses for everything else.
· Label glasses so that everyone knows which is reading or distance.
· Communicate with consent any sight problems someone may have and they way in which this care plan is carried out.
· Create or incorporate sight loss and the adjustments someone needs into a care plan which is based on the individuals sight needs.
· In buildings, provide good even lighting and try to eliminate shadows.
· Remove ‘busy’ patterns (on walls, furniture or floors) that create visual clutter and remove shiny surfaces that cause glare.
· Minimise visual and physical obstacles and. Changes in floor surfaces or patterns can exacerbate visuoperceptual difficulties.
· Reduce slip and trip hazards – help people put things away and find them by using clear storage and / or labelling.
· Use colours and contrasts to make different areas or items clear: a white plate on a white tablecloth can be difficult to find; white doors in white walls make it hard to find rooms or cupboards.
· Make routes between different rooms or places clear – especially in shared housing; use clear signs that contrast with their surroundings.
· Assistive technologies – from automatic lights to audio labels – can be helpful; OT's can advise and devices are available from RNIB and disability equipment suppliers.
· Talk about what is happening: where the person with dementia and sight loss is and where they are going - describing the route while walking may reduce disorientation and increase independence.
· At meal times, describe the food and drink, where it is on the table, who and what is beside or nearby.
· People need to know where things are and that they are where they left them: leaving things as the person left them can support independence.
· When you enter or leave the room where a person with sight loss and dementia is – tell them.
· If administering, or supporting a person to take medication, explain what is happening and what the medicine is for.
Q: What are the best ways of ensuring stimulating activities remain accessible to people with dementia and sight loss?
A: Find out how activities that have been enjoyed can now be made accessible – here are some ideas about how to keep activities engaging and interesting.
· Talking newspapers bring the news alive, audio books make reading possible; film and TV audio description is widely available; tactile or large print games are readily available; music choices can be made accessible with audio labels
· Use scent, sound, touch and movement: such as snoozellen, massage, foot baths, food tasting, cookery, singing and dancing.
· If visiting a venue, find or create audio descriptions
· Make any activity on offer accessible by giving clear information about what is going on, encouragement and support to be involved.
Q: Either sight loss or dementia may cause visual hallucinations, which can be distressing. What are the best ways to help reduce any distress?
A: A full diagnosis is essential in understanding the root of the visual hallucination. The following practical tips may also help to reduce feelings of distress:
· Explain what is happening, offer support and reassurance, don’t argue
· Focus the person’s attention elsewhere
· Encourage eye movements
· Create the opposite situation, e.g. if hallucinations occur in bright light, dim the lights
· Reduce shadows and improve lighting.
Q: What other resources are available to help with dementia and sight loss?
The following list outlines a range of additional resources that can be explored.
Information and advice about dementia:
· Alzheimer’s Society. Visit www.alzheimers.org.uk
· Alzheimer’s Society book of activities, by Sally Knocker, 2003
· Hallucinations in people with dementia www.alzheimers.org.uk/factsheet/520
· Visuoperceptual difficulties in dementia www.alzheimers.org.uk/factsheet/527
Information and advice about sight loss:
· RNIB. Visit www.rnib.org.uk for practical support, information and advice about how to help blind and partially sighted people live independent lives, as well as locating Resource Centres.
· Local sight loss charities, find yours at: www.visionary.org.uk
· Disability equipment centres, find yours at: www.assist-org.uk
· Thomas Pocklington Trust. Visit www.pocklington-trust.org.uk for housing and lighting good practice guides
· Macular Disease Society. Visit www.maculardisease.org for information about the most common cause of sight loss among older people in the UK.
Contacting the Group
The information outlined in this document was produced by the Dementia and Sight Loss Interest Group, led by Alzheimer’s Society, RNIB, Thomas Pocklington Trust and Ove Arup & Partners Ltd, part of the VISION 2020 UK Group. Visit www.vision2020uk.org.uk to find out more.
Contacting Group Members
Clive Evers - Head of Professional Liaison
Telephone: 0207 423 3531
Pamela Lacy - Evidence & Service Impact - Older People's Officer
Telephone: 0117 934 1702
Thomas Pocklington Trust
Sarah Buchanan - Research & Development Manager
Telephone: 0208 995 0880
Ove Arup & Partners Ltd
Pam Turpin - Senior Consultant
Telephone: 0113 237 8293
Email: Pam.Turpin@arup.com part of the VISION 20220 UK Group. Visit www.vision2020uk.org.uk to find out more.