Dementia and sight loss: quality standards for patient care

It’s estimated that around 120,000 people live with both dementia and sight loss in the UK, yet there has been little guidance on how to manage these conditions together. The new Vision 2020 UK Dementia and Sight Loss Committee seek to change this, with the publication of seven quality standards for patient care.

Paul Ursell, Consultant Ophthalmologist and chair of the committee recently spoke on Vision 2020 UK’s podcast about the prevalence of sight loss among dementia patients, and what can be done to help them. He spoke alongside Matt Broom, Operations Manager at Vision 2020 UK, to give listeners an understanding of what living with dementia and sight loss can be like.

How dementia affects vision

Dementia is an umbrella term, which relates to a cognitive imbalance caused by atrophy of the brain. The way dementia affects the brain differs from person to person, and this can be categorised under conditions like Alzheimer’s and dementia with Lewy bodies.

What isn’t well-known is that dementia can affect someone’s sight as well as their memory, known as posterior cortical atrophy. This type of visual impairment affects the way information is processed by the brain, leaving a person unable to recognise objects or places.

Dementia affects the vast majority of sufferers in old age, so they may already have sight impairment when they are diagnosed with dementia. Similarly, sight deteriorates as we age. A person may first be diagnosed with dementia and then suffer sight loss from conditions like age-related macular degeneration or cataracts.

All of these circumstances mean that it is very likely that someone will have visual impairment and dementia at the same time. This is why these quality standards are in place, in order to properly treat patients with both.

In the podcast Paul and Matt discuss the issue of our ageing ‘baby boomer’ population. More people reaching their 60s, 70s and 80s in the next decade will mean more of the global population living with both sight loss and dementia. Health professionals and carers need an understanding how both conditions affect each other as the number of people with both increases.

Dementia and sight loss: the effect on quality of life

Understandably, deterioration of memory alongside poor vision can make daily life very distressing. The inability to remember objects, people and places as well as an inability to see properly leads to poor mental health, an increased risk of falls and social isolation.

Having both conditions also makes caring for somebody more difficult, even for simple things like ensuring the person wears their glasses or is able to move around their house.

In the podcast, a number of strategies are recommended to help care for a person with dementia and sight loss. For professionals and families, UCL have developed an online course called ‘The Many Faces of Dementia.’ These free video tutorials give an insight into dementia including the key issues affecting someone in day-to-day life. There is also a module dedicated to sight loss and dementia.

A number of practical strategies are also suggested in the podcast to improve daily life::

  • Ensure they have yearly eye tests. This could be in practice or via domiciliary visits. Regular eye checks ensure sight loss is picked up early.
  • Make sure they wear their glasses. Trying to make a person with dementia understand the need to wear glasses can be tricky in some cases, but if a person is able to see clearly they are more likely to stay safe each day.
  • Consider the home environment. Simple things like good lighting, high contrast furniture (to minimise trips and falls) and removing clutter ensures a safe, user-friendly environment for the person.
  • Reduce noise. Many older people may have multi-sensory issues, such as hearing loss, so keeping noise to a minimum helps them navigate their day with less stress.

Quality standards for healthcare professionals

The key message from the Dementia and Sight Loss Committee is the need for the medical profession to understand how to navigate someone when they are in the care of the health service.

The committee has set seven quality statements to ensure a patient, their families and their carers have access to the right care and information to minimise distress and maximise medical outcomes. These are:

  1. People with sight loss and dementia receive care from healthcare professionals appropriately trained in sight loss and dementia.
  2. People with sight loss and dementia, and their carers, are provided with accessible information and the support they require to participate in decisions about their care.
  3. People with sight loss and dementia, and their carers, can safely and effectively attend ophthalmology appointments.
  4. People with sight loss and dementia have a shorter wait in clinic and a longer appointment.
  5. People with sight loss and dementia, and their carers, receive accessible information about vision and eye health.
  6. When people with sight loss and dementia cannot perform a standard vision test, a functional vision assessment is used.
  7. People with sight loss and dementia are referred to local support services via agreed pathways.

These statements offer a considered approach to treating those with dementia and sight loss and gives give health professionals the structures and processes to do that. Read the full quality standard document on the Royal College of Ophthalmology website.

Further resources on dementia and sight loss

Eye health professionals and dementia charities are working to provide better care for those with dementia and sight loss, and so there are now a number of resources available. These are useful for patients, carers and professionals:

All of the resources outlined above represent very promising steps towards helping those with dementia and sight loss, and hopefully are timely enough to deal with an ageing ‘baby boomer’ population. Dementia is a challenging enough condition and adding sight loss to it presents many obstacles, but with the right understanding, these can be accommodated.

If a patient has regular eye screenings, the right community support and care from trained professionals, it can improve their quality of life as much as possible.

Read more about quality of life and sight loss in our blog post, or find out more about sight loss in older age.