Dementia and sensory loss: Deafblindness

What is deafblindness?

Increasing numbers of older people are developing hearing and vision problems. Some older people have significant hearing and vision problems – known as deafblindness or dual sensory loss.

Deafblindness often comes on very gradually. The older person (and others around them) may not recognise or understand what is happening. Combined hearing and sight loss can cause problems with communicating, getting around and accessing information. This can make everyday activities more difficult and can make people feel excluded from society.

According to Sense, there are 222,000 people aged over 70 with dual sensory loss in the UK. By 2030, this will rise to 418,000 (from Sense website, ‘Information for professionals’).

Dual sensory loss and dementia: Sheila’s story

View the full video

To put this another way, one in twenty people over the age of 75 are likely to be classed as deafblind (from Sense website, ‘Information for professionals’). This means that if you are working with or supporting older people with dementia, you are very likely to be coming into contact with people who have dual sensory loss at the same time.

Where deafblindness meets dementia

When a person is deafblind they have to rely heavily on their brain to compensate for their sensory loss. But if dementia is starting to damage the way a person’s brain is functioning (for example, it is affecting their memory and ability to find the right word in conversations), life can become increasingly difficult and a person may need additional support with tasks they have been able to manage before.

If you think of deafness as the colour yellow and blindness as the colour blue, when you mix the two together you dont get yellow-blue but a completely different colour – green.

Deafblind person (see Sense, Fill in the gaps 2011)

Staff need to be aware of the signs and symptoms of both dementia and deafblindness and recognise that both conditions change and deteriorate over time, potentially obscuring the signs of the other. Signs and symptoms of dementia and deafblindness can be quite similar – for example, difficulty in following TV or radio programmes, confusion and not remembering conversations you have had are all recognised as possible signs of each condition. It is therefore important that you take steps to ensure you are monitoring, identifying and acting on changes in conditions.

The impact of deafblindness and dementia

Having both a visual and a hearing impairment will multiply the difficulties an individual faces. Consider these examples:

If you have difficulty hearing and can’t hear what someone is saying, you watch their lips and facial expressions for extra clues. But if you also become blind or partially sighted, how will you understand what is being said?

If you don’t see well, you depend on your hearing when moving around and travelling to know what is happening around you. But if you become deaf or hard of hearing and can’t hear or see the traffic, how will you know when it’s safe to cross the road?

Dual sensory loss is not just a deaf person who cannot see or a blind person who cannot hear – the two impairments have an impact on each other and multiply the total effect.

If you can no longer easily see or hear the television, listen to the radio, read your letters, use the phone or engage in conversation you become isolated from people, events and society. This sensory deprivation can lead to extreme levels of boredom, stress, depression and withdrawal.

Deafblind older people may not think of themselves as deafblind. They are more likely to say they ‘don’t see and hear too well’. All people with dual sensory loss will find that things take longer. Communication is slower and it will take longer for them to understand new information. Combine this with dementia and a lot of time and patience will be needed.

When you can’t communicate with people around you, can’t get from place to place and never know what’s going on around you, daily life is very frustrating and stressful. Many people find it impossible to communicate about this frustration. This can lead to anger, depression, withdrawal or other behaviour which is out of character. These feelings are also common in people with dementia. The combination of the two conditions can make things worse.

Ways of communicating

Deteriorating hearing and vision leads to problems in communication. Equipment such as hearing aids may help.

Most deafblind people use clear speech to communicate face to face. Ensuring you communicate clearly and at a pace and pitch suitable to the individual, and making sure you look at the person so they can lip read if necessary, can mean less frustration.

However, for those people whose hearing and sight loss mean they can no longer do this, alternative methods of communication may be needed. For someone with dementia this may be even more frightening and challenging.

Learning a new way to communicate may become increasingly difficult for someone with dementia as the disease progresses, so early identification of sensory loss is crucial. However, if this isn’t possible there are still some simple ways you can facilitate communication.

Here are some possible options:

Writing things down
Even if someone has a vision loss they may still be able to read large clear letters in thick pen, maybe even with the help of a magnifier. Experiment with different sizes of lettering and different colours of paper and pen. This method is relatively easy to adapt to if an individual has enough vision, and as long as they are able to read, and may well be successful with individuals with dementia.

Block letters
For some people, drawing block letters on the palm of the hand is the easiest way to communicate. This is fairly easy to learn provided the person has sufficient sensitivity in their palm to distinguish the letters (see Sense’s Teach yourself the block alphabet resource). As with writing things down, as a long as a person has learnt to read, this can be quite successful especially in the simple form of giving people choices and information in a basic format such as ‘day’/‘night’/‘mum’/‘dad’ and so on.

Deafblind manual
This is another way to spell out letters onto the hand. It is easy to learn but much harder to learn to receive (see Sense’s Teach yourself the deafblind manual alphabet resource). This may be difficult for someone to learn if they are having difficulty with their memory already, but if sensory loss is identified early on this may well be successful.

Tactile clues
If communication is slow it can be useful to use tactile clues to reduce the need for verbal communication. For instance, if staff use an object (such as a distinctive bracelet or ring to identify themselves) the person will quickly know who is there as soon as they feel the object. Using different objects, textures, colours in different rooms or routes can help people navigate more easily and understand where they are. This can be successful with individuals with dementia, as it is using objects they will have early memories of to identify activities and people. Smells can also be used consistently to identify different days or activities. The use of tactile clues consistently can stay with a person, even subconsciously. Tactile objects and smells can also be used in reminiscence and memory activities to make them accessible to an individual with a sensory loss.

Written information
It is important that information and correspondence is provided in an accessible format. Letters, care plans, information about activities, menus and so on should be available in large print, braille, tape or disk as appropriate for the individual.

Moving around and guiding

Moving around safely and confidently with limited hearing and vision is very difficult and is made even more so if there are additional mobility problems. Coping with constantly moving unpredictable ‘objects’ – such as people – is a major undertaking. If the person also has dementia this can be terrifying and people will often choose not to move for fear of what might happen. For example, an individual who has had acquired dual sensory loss for some time and has managed relatively independently using compensatory methods may suddenly find it difficult to remember their regular route to the shop and gets lost one day and then another. All of a sudden leaving the house is terrifying and the person no longer wants to go out, limiting their independence. Acting quickly and getting the right support from the right specialists can clarify if this is due to deterioration in sensory function or whether this is an early sign of dementia. Appropriate actions can then be taken.

Using the correct technique of guiding is even more important when guiding someone with hearing loss (the feature on ‘Sight loss and dementia’ looks at this too). It will be harder, or impossible, for you to support them by giving information verbally while guiding. If the person uses tactile communication, for instance, you will have to stop to talk to them. You will need to take their hand and gently show them chairs, handrails and so on. Take your time and allow plenty of time for them to explore what you are showing them and understand what it is before proceeding.

Practical ways to help

People with dual sensory loss often will have developed routines, ways of doing things and specific storage places for important items. Change to this routine, or moving of objects can cause confusion and distress. When deafblindness is combined with dementia a change to routine can cause fear and aggression and withdrawal from service or a relationship with a support worker.

As a care worker, when you first enter an individual’s room or house, take care to note where everything is stored. Don’t move anything unnecessarily and when you need to do something such as to wash up a cup or re-fill a water jug, tell the person what you are doing and repeat this as often as needed to reassure them.

An individual may also forget who you are, and if they do not have the sight or hearing needed to pick up sensory clues that you are care staff, they may be very frightened when you appear in their home or room. Before you do anything introduce yourself (it may be a good idea to use a tactile clue as they may be more likely to remember this than your name), where you are from and the activities you are going to do while you are there. You may need to repeat this as you do each activity, always remembering that they may not be able to hear or see what is happening so have no visual or auditory reassurance.

Specialist assessment and support

People who have a hearing and sight loss which impacts on their communication, access to information or mobility are known as deafblind, as defined by the 1997 Department of Health report, called Think dual sensory. People who meet this definition are entitled to an assessment carried out by someone who is specifically trained to assess the needs of a deafblind person (for more on this see Sense’s online information on ‘Deafblind guidance’. Such an assessment will ensure that the person has the best support and equipment to enable them to live as independently as possible. If you work with someone who has a dual sensory loss you should ensure that they have had such an assessment. The local social services team should arrange it.

Many older deafblind people benefit from the support of a communicator guide: this is someone who is trained in communication and guiding skills to work with people who have both hearing and sight loss. If the individual also has dementia it is ideal if the communicator guide also has training and knowledge of supporting someone with dementia. They will assist a person with a range of activities, such as dealing with mail or going to the shops. Some people can get this service from their social services department. Others purchase a service from local voluntary organisations.

Specialist equipment

People with a dual sensory loss may use a range of equipment suitable for people with a single sensory loss. There is also a range of products designed for people with a single sensory loss, which use tactile rather than audible or visual cues, such as vibrating alarm clocks, easy-to-see amplified phones, large-screen textphones, tactile markers, vibrating pager systems for doorbell, telephone or smoke alarm alerting. Specialist advice should be sought from local hearing and vision or sensory support services provided by the local authority. RNIB, Action on Hearing loss, or local voluntary sector organisations may also have shops resource centres where you can go to try out technology and see what is most suitable for you or the person you are supporting.

What is it like to be deafblind with dementia? An example

A woman lives independently in her own home. She likes to sit in her chair surrounded by her things, following the same routine she always has. All of a sudden, she starts to forget what time it is and worries constantly about when and if her home care worker is going to come and help her to have a bath or if her daughter is going to come for Sunday lunch. She becomes increasingly anxious and frustrated. Then one of her daughters starts to call her every day to sing with her (which she really enjoys) and to reassure and reinforce the day and time. But then the woman’s vision and hearing starts to deteriorate and she can no longer enjoy the phone calls. To make things worse she thinks people are stealing her things. She becomes aggressive with home care staff.

The woman in this example is deafblind. This was not recognised initially, but when it was she was able to get appropriate help. Technology – in this case an amplified phone – enabled her to use the phone again. Staff were also given the support to understand her sensory loss and also to understand that the combination of sensory loss and dementia had meant that she could no longer see where her things were – and if she couldn’t feel them with her hands she assumed they had been stolen. When her family and care staff came to recognise and understand both conditions, this woman’s life became calmer and enjoyable again.

Access and download additional resources