Dementia and sensory loss: an introduction
Understanding sensory loss in dementia care
This feature looks at why understanding and responding to sensory loss is important for people with dementia.
To have difficulty with seeing or reading signs or hearing what someone is saying on the telephone – these things are all the more difficult for a person living with dementia, who is already working hard to make sense of the world around them. And yet, there are things we can and must do to support people with dementia who have sensory loss.
This feature will look at some of the general problems faced by people with dementia and sensory loss, and what we can do to support them better. Other features will look in more detail at each of the main conditions – sight loss, hearing loss, deafness, and deafblindness – and discuss their prevalence, signs for recognising problems, and ways in which care staff can support people.
Having both dementia and some form of sensory loss is a common and significant problem, and the numbers of people living with both these conditions is increasing as people live longer. The links between sensory loss and dementia are only now starting to be recognised, and this area has not been the subject of much research.
We do know that at least 123,000 people in the UK have dementia and serious sight loss (Jones, 2007). But we do not know how many people have dementia and some form of hearing loss, or dementia and deafblindness.
People who are Deaf with dementia are among the most vulnerable in society, they don’t need even more barriers by hearing people expecting them to communicate without an interpreter.An interpreter, quoted in Allan, K. (2006) ‘Deafness and dementia’, in the Journal of Dementia Care
According to Age UK, 50 per cent of people aged over 60 will be affected by some type of hearing loss, and Sense tells us that one in 20 people aged over 75 are likely to be classed as deafblind (that is, they have moderate or severe hearing loss as well as moderate or severe sight loss). Given that the key risk factor for dementia is age, it is important that anyone working with older people and people with dementia is aware of the significant complications that can arise because of sensory loss.
Day-to-day living is harder
Living with both dementia and sensory loss presents challenges, and compounds the problems of each condition. Or to put it another way, it is harder to live with dementia when you have sensory loss, and it is harder to cope with sensory loss when you have dementia.
For example, a person with dementia who has sight problems is more likely to have falls, to experience hallucinations, and to have difficulty finding their way about and recognising where they are. A person with dementia who has hearing loss is more likely to feel isolated from other people and depressed. And a person with dementia who has dual sensory loss – that is, sight loss and hearing loss – will have difficulty with day-to-day living if, for example, their coping strategies rely on them using their memory.
Depending on whether the sensory loss develops first, or the dementia, may have an influence on how the person manages day-to-day living and whether they are able to benefit from problem-solving interventions or new aids or equipment.
The problems are harder to identify
Living with dementia may make it hard to recognise sensory loss as it develops – because others assume that a person’s problems (say, not following what someone is saying) are caused by the dementia, rather than being caused by hearing loss. Unfortunately, many people use the label of ‘dementia’ to explain all sorts of difficulties experienced by an individual – including sensory loss. Regular hearing and sight tests are the only way to test this assumption and make sure that a person’s needs have been properly assessed.
Similarly, living with sensory loss may also make it harder to recognise the onset and progression of dementia: for example, a person with sight loss may be in the early stages of dementia, but others assume that their problems with finding their way about are explained by their sight loss. Again, it is important to recognise when specialist input is needed – to help identify the problems and point towards solutions and treatments if possible.
How dementia can cause sight and hearing problems
Some types of dementia can cause damage to the brain’s visual system, resulting in problems that appear to be a sight problem – without an eye condition causing this. These include Alzheimer’s disease, Parkinson’s disease dementia, dementia with Lewy bodies and vascular dementia, as well as rarer forms of dementia such as posterior cortical atrophy (PCA).
People with dementia may well experience a range of symptoms – disorientation, spatial awareness, difficulties with depth perception, and failure to recognise what they are seeing with their own eyes – none of which are caused by physiological problems with the eyes, but with the brain’s ability to process the information that the eye receives. People with sight loss and dementia are also more likely to experience hallucinations or visual misinterpretations, caused by the dementia or the sight loss.
Dementia can also cause problems that may appear to be a hearing problem. Auditory hallucinations can be a problem for some people with dementia, and could lead to confusion as to the state of a person’s hearing. A more common problem is that a person with dementia may seem very withdrawn, reluctant to engage in communication, or unable to follow a line of conversation. All these things may be mistaken for hearing loss when in fact they are related to the person’s dementia.
How do people living with sensory loss find out about dementia? We know that information about dementia for people with sensory loss tends to be poor. For example, very little information is available for deaf people that explains what dementia is and what support is available for those living with dementia. Information needs to be accessible, taking into account things like font size and translation.
Accessible information and communication is critical for enabling a person with sensory loss and/or dementia to access suitable services at the point of diagnosis and for ongoing assessments. It is vital to explore an individual’s preferred method of communication, taking into account both their dementia and their sensory loss. Assessments and cognitive testing too need to take account of sensory loss: some tests rely heavily on visual interpretation of information or hearing and understanding questions.
The importance of regular checks
In general, it’s important to encourage older people to seek regular hearing and sight tests. In the case of people who may have dementia and sensory loss, we know that both conditions can change and deteriorate. Given this, it’s even more important to stay aware of this and reassess both regularly.
Care providers (and particularly care homes) need to be aware of how to access assessment and support services for people with sensory loss. Find out about how to access specialists who will visit the care home, what rehabilitation services are available locally, and who can advise on equipment and practical solutions.
The right equipment and environment
It’s important to be aware of the sort of basic equipment that can help people to live with particular types of sensory loss, and to make every effort to put this equipment to good use and maintain it.
Consider the basics, for example, with hearing aids. Has the person remembered to wear it? Is it being worn properly, is it turned on, and is it maintained as necessary? Does the care home have a loop fitted? And glasses: Are they within reach? Are they clean? Are they the correct strength? Are they clearly labelled (‘for reading’ and so on)? See the other features in this section for more suggestions on this.
Think about getting the care environment right too. Is the lighting bright enough? Have colours – and contrasts of colour – been used thoughtfully? Are shadows or glare causing problems? Where is the furniture positioned, and does this help or create problems? What are noise levels like? See the other features in this section for more suggestions on this, and the section on Dementia-friendly environments too.
Making a difference
It is through this careful attention to detail that we can start to make a difference for people living with dementia and sensory loss. Despite being common conditions, dementia and sensory loss are not an inevitable part of getting older, nor define the limits of what a person can or cannot do.
Much can be done to address the particular challenges faced by people with dementia who are coping with sensory loss too. Small, simple changes can make a huge difference. Social isolation is one of the biggest challenges, but with some awareness, and more understanding of both conditions, staff and family carers are better placed to support people to continue to be engaged in the world around them.
Access and download additional resources
Further reading Open
Acting on Hearing Loss (2011) Hearing matters, London: Action on Hearing Loss.
Action on Hearing Loss and Deafness Cognition and Language (DCAL) Research Centre (2013) Joining up: Why people with hearing loss or deafness would benefit from an integrated response to long-term conditions, London: Action on Hearing Loss.
Age UK, ‘Hearing’, online information.
Allan, K. (2006) ‘Deafness and dementia: consulting on the issues’, Journal of Dementia Care, vol 14, no 3, pp 35–38.
Allan, K., McLean, F. and Scott Gibson, L. (2005) Dementia & deafness: What you need to know, Edinburgh: Deaf Action. Available to view here.
Alzheimers Society (2012) ‘Sight, perception and hallucinations in dementia’, Factsheet 527, London: Alzheimer’s Society.
RNIB, ‘Dementia and sight loss’, online information.
RNIB (2010) Seeing it from their side: A guide to recognising and supporting sight loss in your care home, London: RNIB.
RNIB (2012) Sight loss UK 2012: The latest evidence, London: RNIB.
Sense, ‘Information for professionals’ online information.
Useful links Open
Dementia and deafness: What you need to know
This 2005 booklet from Deaf Action in Scotland is based on an exploratory study into the experience of being Deaf with dementia conducted by Deaf Action and the University of Stirling’s Dementia Services Development Centre.
Dementia and sight loss
The RNIB website has an extensive section on dementia and sight loss, including a leaflet on ‘Dementia and sight loss’, frequently asked questions, and a factsheet on ‘Cataracts and dementia’.
Good practice in the design of homes and living spaces for people with dementia and sight loss
These 2014 guidelines from Thomas Pocklington Trust and Stirling University present practical steps to improve the independence of people with dementia and sight loss, whether they are living in their own home or a care home. The resource is available in audio format as well as in written text.
This 2013 report from Action on Hearing Loss and the Deafness Cognition and Language Research Centre (UCL) argues that a joined-up approach is needed to the assessment, diagnosis and management of both hearing loss and dementia.
The Dementia and Sight Loss Interest Group
This is an interest group within VISION 2020, and brings together a range of organisations working in this area. In 2016, VISION 2020 UK and the Royal College of Ophthalmologists launched a quality standard to help ophthalmology departments adapt and design their services to meet the needs of people with dementia..
Related pages from this section Open