Deafblindness will impact every aspect of someone’s life, and if you are caring for someone with deafblindness, this will present its own unique challenges. Here we offer a general introduction to the condition of deafblindness, and share some simple, practical strategies you might use to support the person you care for if they are living with both hearing and sight loss.
What is deafblindness?
Deafblindness is the term used when someone lives with both sight and hearing loss. It can also be called dual sensory loss or multi-sensory impairment. Someone people are born with deafblindness but it can also be a condition that progresses over time.
Everyone’s experience of deafblindness will be different, and the extent of the sensory impairment will vary from person to person. For example, someone might find it difficult to see or hear the TV but are able to see parts of their environment, whilst someone else might not be able to see or hear anything at all. Dual sensory loss affects someone’s day to day life, making communication, mobility and the ability to access information much more difficult.
If you think someone might be deafblind, you might be noticing signs they are struggling with activities and tasks that didn’t bother them before. They might be turning up the volume on the TV or finding it difficult to follow conversations. Perhaps you have noticed they are reaching out to hold onto things, bumping into furniture, and finding it hard to read. If you feel their sight or hearing is changing, talking to the person you care for about any challenges they might be experiencing is the best place to start, and your GP can advise you about next steps.
Whilst deafblindness is one condition, often the diagnosis comes in two parts; hearing loss and sight loss. If the GP believes that the individual is experiencing sensory impairment, they will be able to refer them for tests to help determine the type and extend of the impairment. For example, they may refer for hearing assessment or sight test. These can be completed by a specialist however some high street places offer these tests too, such as an optician or pharmacy. Going to see an optician about any changes to their vision or hearing can also help discover why they are having difficulties with their vision. If the optometrist finds signs of an eye condition, they or your GP will make a referral to an ophthalmologist in their local hospital who can offer more specialised help and support.
Speaking to your GP early on if you have any concerns at all is always a positive first step, and they will be able to refer you to the right places to ensure you and the person you care for get the support you need.
If the person you care for is experiencing deafblindness, you will be supporting them in many practical and emotional ways. Your caring role might involve supporting them to preserve their existing sight and hearing, as well as managing any other conditions they might have. This might mean working in partnership with health professionals, helping the person you care for to get to appointments on time, and making sure they take any medications they need.
Your caring role might also include
- Supporting them to develop new ways of communicating with you and those around them,
- Empowering them to be as independent as possible whilst staying safe, both inside and outside the home.
- Helping them to deal with the complex feelings and emotions that can arise when someone develops multi-sensory impairment.
You might be finding things difficult too, and dealing with your own feelings and emotions alongside the caring role during this challenging time. Your personal experience will depend on lots of different factors, and getting the help you both need will be key to you feeling supported and confident that you can both still enjoy a full, independent life.
For someone with deafblindness, practical tasks like getting dressed, preparing breakfast, going shopping, socialising with others and paying bills can be more challenging. Whilst there may be some tasks they are unable to do, empowering them to complete tasks within their capabilities can be key to ensuring they remain as independent as possible whilst ensuring their needs are met. There may be some home adaptations or adjustments which help with this including moving furniture and keeping walkways clear and well lit, making sure items are always stored in familiar places, and installing handrails. This can help someone to feel as secure as possible in their home.
For individuals living with deafblindness, standard fire and home safety measures may not be suitable, there are however support mechanisms in place to help. A great first step is to book a free Safe and Well check with the local Fire Service. Their team will come to visit to provide actions and advice to help make the home as safe as possible. They can also provide specialist equipment too, like smoke alarms especially designed for those with hearing difficulties, and draw up the best fire escape plan for use in case of an emergency.
For some people living with deafblindness, these few simple changes can make all the difference.
Accessing support for someone who is deafblind
Learning how to support someone who is deafblind can feel overwhelming for many carers at first, but there are mechanisms in place to help you get started. A useful first place to start is by speaking to the GP who can offer information about deafblindness and signposting to relevant organisations.
For access to support, it can also be helpful to access a Social Care Needs Assessment from the local authority. This assessment can help determine what specific needs the person you care for may have, and create a plan to make sure those needs are met. As part of this assessment and meetings with your healthcare team, you’ll also find out about certain assistive aids, training to learn new skills, and technology which could support the person you care for to remain as independent as possible.
When living with deafblindness, many individuals face barriers when it comes to accessing spoken language and visual cues, and so exploring alternative methods of communication can be beneficial. Using pictures, Braille, British Sign Language (BSL), and Deafblind Manual (a form of communication that uses touch alone, not speech or sight) are some of the ways that people with deafblindness communicate, often combining more than one method. Condition-specific organisations can offer training in these methods as well as all sorts of other forms of advice and support, from practical advice to counselling services.
Getting out and about can be especially challenging for those living with deafblindness and so may individuals find attending appointments to be quite stressful. If the person you care for finds attending appointments to be overwhelming, it can be worth exploring whether they are able to access at-home services like opticians, dentists and podiatrists. This can help to reduce some of the worry of getting out and about and help people with deafblindness to access support for their wellbeing.
Some people with deafblindness may receive a referral to a specially trained ‘communicator guide’ who can work with them one-to-one and support them in living as independently as possible.
Some individuals may also be eligible for an assistance dog to support them. For more information on how assistance dogs can support someone with a sensory impairment, you can read our article.
Accessing support for yourself if you are caring for someone who is deafblind
Caring for someone who is deafblind can feel like a daunting task, and seeking support for yourself will help you feel more confident. Speaking to your GP and asking questions of any of the other health professionals involved about the condition and how it might progress will empower you to feel more informed and know what to expect.
Condition-specific organisations like Sense and DeafBlind UK offer lots of support, not only for the person living with deafblindness but for you as their carer too. There will also be local and online organisations for carers where you can connect with others going through similar experiences, and receive peer support as you step into caring for someone with deafblindness. Your GP may be able to refer you to these, or you can find them online.
As a carer of someone with deafblindness, prioritising your own wellbeing is vital to you staying healthy and safe and being able to care in the long term. Our article on looking after yourself as a carer offers more support and practical advice here.
Read more article on caring for someone with a sensory condition
Online Help and Advice
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