Supporting people with sight loss and dementia

Following NB Live, Trina Wallace explores what eye health and sight loss professionals need to know about dementia and sight loss.

 “I can't find the toilet.” That’s what Keith Spink’s Dad said when he called him at work one day. It was the beginning of the journey that led to his dad Derek, who has been totally blind since he was 35, being diagnosed with dementia.

“My dad is in his late 70s now,” says Keith. “When we got his vascular dementia [diagnosis], I looked into the options we had as a family. There's lots of information about dementia and about sight loss but not much about people who are totally blind, who also suffer with dementia. One internet forum, completely unofficial, said that blindness plus dementia, equals a care home.”

Over the last year, Keith has discovered that his dad’s dual diagnosis doesn’t have to be a barrier to living life. First, Keith turned his dad’s three bedroom house into a ground floor flat by blocking off access to rooms he didn’t need.

He also installed technology to help his Dad familiarise himself with his environment. For example, motion sensors that tell Derek where he is. “The technology helps create a micro-environment for dad and he has carers who visit for an hour three times a day,” says Keith.

“It’s not perfect but it's pretty good and dad still lives in the same house that he's lived in since 1984. He's very happy listening to sport on the radio and talking newspapers and he can find the toilet these days without too much difficulty.”

Increasing dual diagnoses

Statistics from RNIB research shows that Derek is one of at least 123,000 people in the UK who have both dementia and sight loss. The visual impairment may be caused by an eye condition, such as a cataract; another health issue, like a stroke; normal ageing of the eye; or the dementia itself. With both conditions, many routine things, such as getting out and about and communicating, can become more difficult. Yet, as our population ages, an increasing number of people will experience both dementia and sight loss.

Dementia group

In finding out how to help his Dad live well with dementia and sight loss, Keith has become an ‘unofficial’ member of the Vision 2020 Dementia and Sight Loss Interest Group  (DaSLIG). It was set up by member organisations in 2008 in response to the growing realisation that awareness of the difficulties faced by people with dementia and sight loss is very low. Members include Alzheimer’s Society, RNIB, Thomas Pocklington Trust, Macular Society, Guide Dogs and the Royal College of Ophthalmologists.

“We know that practitioners are seeing more people with dementia and sight loss and therefore we hope to share learning from research and practice around how to address both when they co-occur,” says Catherine Dennison, Head of Research and Health and Wellbeing at Thomas Pocklington Trust and member of  DaSLIG.

Keith and Dennison joined other member representatives at March’s NB Live Conference 2014. They shared practical tips with eye health and sight loss professionals, including the following five key points.

1. Everyone with dementia should have an eye test

People with certain types of dementia, such as dementia with Lewy bodies - tiny deposits of protein in nerve cells, Parkinson’s disease dementia and Alzheimer’s disease, may experience hallucinations. For example, they may see a shadow on the floor but interpret it as a hole in the ground. Sight loss can increase the risk of someone with dementia experiencing hallucinations – but they could still have healthy eyes if the hallucinations are being caused by the dementia.

“Someone with Alzheimer’s disease may also have problems with their ability to detect different colours, particularly on the blue spectrum,” says Gemma Jolly, Information Officer at Alzheimer’s Society. “They may find it difficult to detect movement and perceive objects in three dimensions, and have problems recognising objects and faces.”  It’s important, then, that someone with dementia has an eye test to establish exactly what they can see.

2. Sight loss and dementia affect people in unique ways which influence their daily life

According to DaSLIG, someone with dementia combined with sight loss can experience: profound disorientation and isolation; an increased risk of falls; difficulties moving between light and dark spaces; difficulties learning to use new equipment; less independence; and misperception and misidentification of people and things.

“Yet often people don't appreciate that someone is experiencing these difficulties,” says Jolly. “They think they’re reacting that way because they have dementia, and that's simply not true. It can lead to: carers becoming particularly concerned about someone's safety, putting restrictions on them; a risk of isolation; and loss of enjoyable activities.”

Understanding what the world is like for someone with dementia and sight loss can help professionals better support them.

3. Find ways to make the most of someone’s existing sight

Rebecca Sheehy, Older people's Impact Team Manager at RNIB, says it’s vital to ensure someone with dementia and sight loss has glasses that are correct, current, and clean. “If they're likely to lose them, try labelling them clearly for the task that they're used for,” she says. “So, if it’s for television, they might be ‘seeing glasses’ or for reading, ‘reading glasses’.”

Adapting the environment the person lives in is also helpful, as Keith did for his dad. She adds this could include: making things bigger, such as having clocks and watches with large numbers; making things bolder, using contrasting colours and avoiding patterns on wallpaper or carpets; and making things brighter, using good lighting.

4. Make activities accessible

Getting outside is key to improving someone with dementia and sight loss’ quality of life. “You often see people who've got dementia who sleep during the day and are up and down like yo-yos at night,” says Paul Ursell, a Fellow of the Royal College of Ophthalmologists. “This is because they are not getting enough ambient light. We need at least 30 minutes of natural light to reset our natural body clock and improve sleep patterns.”

Carers should be encouraged to combine this with advice from DaSLIG to make activities accessible for people with dementia and sight loss, rather than ruling them out.

5. Labels don’t matter, supporting someone in the right way does

People with sight loss can experience visual hallucinations, commonly called Charles Bonnet syndrome. It can therefore be difficult to diagnose whether they might also have dementia because this can cause hallucinations too.

There are two key points for eye and health care professionals related to this. Firstly, Jolly says it’s important to remember that hallucinations are not always distressing for a person with dementia. Secondly, regardless of why someone experiences hallucinations, they are real for the person. “The diagnosis is often slightly immaterial,” says Ursell. “Empathising and understanding that people are seeing these things, they're not making it up, and treating what the consequences of it are, is what’s important.”

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