Deafblindness

Deafblindness is a combination of sight and hearing loss. It affects a person's ability to communicate, get information and move around. You may also hear it called "dual sensory loss" or "multi-sensory impairment".

A deafblind person usually isn't totally deaf and totally blind. But both senses are reduced enough to cause real difficulty in everyday life.

These problems can come up even when the hearing loss and the vision loss are both mild. The 2 senses work together, and 1 would normally help make up for the loss of the other.

Deafblindness most often affects older adults, but it can affect people of any age, including babies and young children.

In older people it usually comes on slowly, and at first the person may not realise their vision, their hearing, or both are getting worse.

Signs of a problem can include:

• needing to turn up the volume on the television or radio
• difficulty following a conversation
• not hearing noises such as a knock at the door
• asking others to speak loudly, slowly and more clearly
• needing to hold books or newspapers very close, or sitting close to the television
• difficulty moving around unfamiliar places

If someone already has a hearing problem or a vision problem, watch for signs that the other sense may be getting worse too.

Go to your doctor if you think your hearing, your eyesight, or both may be getting worse. If you're worried about a friend or family member, encourage them to see their doctor.

It's best to get advice as soon as you can. Treatment for some of the underlying causes of deafblindness works better when it's started early. An early diagnosis also means the person can reach local support services sooner.

Deafblindness has many possible causes. Some babies are born deafblind, but in many cases the hearing loss, the vision loss, or both come on later in life.

Causes of deafblindness include:

• age-related hearing loss
• genetic conditions, such as Usher syndrome
• an infection picked up during pregnancy, such as rubella (German measles)
• cerebral palsy, a problem with the brain and nervous system that mainly affects movement and co-ordination
• eye problems linked with increasing age, such as cataracts

Many care and support services are available for people living with deafblindness. Each deafblind person has a different level of hearing and sight loss, so each has their own care needs.

The general aims of care for a deafblind person are to:

• preserve and make the most of any sight or hearing the person has left, which could mean treating underlying conditions like cataracts, wearing glasses or using a hearing aid
• teach other ways of communicating, such as hand on hand signing or braille
• help the person keep or build as much independence as possible, for example by training them to use a long cane or a guide dog, or by offering a communicator guide

A person who is deafblind usually isn't totally deaf and totally blind. But both senses are reduced enough to cause difficulties with everyday activities.

The hearing and/or vision problems may be there from birth. In many cases, though, one or both problems develop slowly as a person gets older, and they may not notice it themselves at first.

If someone you know has a combination of the signs mentioned below, they may have some degree of deafblindness and should seek medical advice.

Hearing loss can be there from birth, or it can come on slowly or suddenly later in life. Some signs that a person may have a problem with their hearing are:

• not hearing you when you speak to them from behind
• needing to turn up the volume on the television or radio
• difficulty following a conversation, particularly if several people are speaking or the person they're speaking to is unfamiliar
• not hearing noises around them, such as a knock at the door or the doorbell ringing
• asking others to speak loudly, slowly and more clearly
• leaning in very close to hear what's being said

If someone already has a hearing problem, for example they wear a hearing aid or use sign language, keep an eye out for signs of vision problems that could develop (see below).

Deafblindness can mean a person has vision loss from birth, or it can develop later on.

Signs that someone may have a problem with their vision include:

• problems seeing in low light or bright light
• difficulty recognising people they know
• finding it hard to read facial expressions
• relying on touch to find and identify items more than usual
• needing to hold books or newspapers close to their face, or sitting near the television
• difficulty moving around unfamiliar places (they may bump into or trip over things regularly)
• not looking directly at you or making proper eye contact

If a person already has a problem with their vision, for example they wear glasses, use a cane to get around, or have a condition such as glaucoma or cataracts, watch for signs of hearing problems that could develop (see above).

See a doctor if your hearing or eyesight gets worse in any way. If you're worried about the sight or hearing of a friend or family member, encourage them to talk to their doctor too.

It's best to get advice as soon as you can, because treatment for some of the underlying causes of deafblindness works better when it's started early. An early diagnosis also means the person can reach local support services sooner. It gives them time to plan for the future as well, such as learning new ways to communicate.

Deafblindness can have many different causes. Some people are born with it, while others develop it later in life.

Deafblindness that is there from birth is called congenital deafblindness. It can have several causes:

• problems linked with premature birth (birth before 37 weeks of pregnancy)
• an infection picked up during pregnancy, such as rubella (German measles), toxoplasmosis or cytomegalovirus (CMV)
• genetic conditions, such as CHARGE syndrome or Down's syndrome
• cerebral palsy, which is a problem with the brain and nervous system that mainly affects movement and co-ordination
• foetal alcohol syndrome, which means health problems caused by drinking alcohol in pregnancy

In most cases, deafblindness develops later in life. This is known as acquired deafblindness.

A person with acquired deafblindness may be born with normal hearing and sight and then lose part or all of both senses later. Or someone may be born with either a hearing or a vision problem, and then lose part or all of the other sense later on.

Problems that can contribute to acquired deafblindness include:

• age-related hearing loss
• Usher syndrome (a genetic condition that affects hearing, vision and balance)
• eye problems associated with increasing age, such as age-related macular degeneration (AMD), cataracts and glaucoma
• diabetic retinopathy (a complication of diabetes where the cells lining the back of the eye are damaged by high blood sugar levels)
• damage to the brain, such as from meningitis, encephalitis, a stroke or severe head injury

Deafblindness may be picked up soon after a baby is born, or it may be found through tests later in life.

If you have any worries about your hearing or vision, or your child's, at any point, speak to your doctor. And if you're worried about a family member or friend, try to encourage them to see their doctor.

If your baby is born deafblind, it will usually be picked up during newborn screening. This is a series of checks done to see whether your baby has any serious health problems from birth, including problems with their eyes or hearing.

If nothing is found at this stage, the problem may still be detected during routine checks as your child gets older.

In most cases, deafblindness develops as a person gets older. It can come on slowly, so at first you may not notice that your vision, your hearing, or both are getting worse.

That's why routine eye tests matter, as they can pick up problems early. Adults should normally have their eyes tested every two years.

If you think you may be losing your hearing, you can ask a doctor for a hearing test at any time.

A person may be diagnosed with deafblindness if tests show problems with both hearing and vision.

Even after the diagnosis, their hearing and vision should keep being checked regularly. The care and support they need will depend on how badly each sense is affected.

Treating the cause of deafblindness isn't always possible. Even so, there are care and support services that can help people living with the condition.

Most deafblind people still have some hearing and/or vision. How much care and support they need depends on how severe their hearing and vision problems are.

A deafblind person's individual abilities and needs should be assessed soon after they're diagnosed with deafblindness. This lets a care plan be drawn up to suit them.

The care plan will:

• preserve and make the most of any remaining sensory functions the person has
• teach other ways to communicate, such as the deafblind manual alphabet (see below)
• help the person stay as independent as possible, for example by recommending training to use a long cane or guide dog, or by providing a communicator guide
• for young children, make sure their educational needs are met

Deafblindness can make it hard to communicate by speech and writing, so other ways of communicating may be needed. The main systems deafblind people use include:

• clear speech: speaking clearly is one of the most effective and common ways to communicate with deafblind people who still have some vision and hearing
• deafblind manual alphabet: a touch-based system where words are spelt onto the deafblind person's hand using set positions and movements
• block alphabet: a simple touch-based system where a word is spelt out in capital letters drawn onto the deafblind person's palm
• hands-on signing: an adapted form of British Sign Language (BSL), where the deafblind person feels what is being signed by placing their hands on top of the signer's hand
• visual frame signing: an adapted form of BSL, where the signs are made in a smaller space to match the position and size of the deafblind person's remaining sight
• braille: a system that uses a series of raised dots to stand for letters or groups of letters
• moon: similar to braille, but it uses raised, adapted capital letters that are simpler to feel

For some deafblind people, it may be possible to improve vision using low vision aids, such as glasses, magnifying lenses and task lights. Specially designed items, such as telephones and keyboards, may also help someone who is visually impaired.

The Royal National Institute of Blind People (RNIB) has more information about everyday living with vision loss. This includes advice about the technology available to help with everyday tasks.

Many libraries stock a selection of large-print books and 'talking books', where the text is read aloud and recorded onto a CD. The RNIB also offers a talking book subscription service, and books can be ordered and delivered directly to your home for a small annual fee.

Read further information:

• RNIB: Assistive aids and technology

Some people with deafblindness may benefit from wearing a hearing aid. There are several styles, so the right one can suit the type of hearing loss and what the person prefers.

A hearing aid picks up sound from around you with microphones, makes it louder and delivers it into the ear canal, so the auditory system can process it. An audiologist (a hearing specialist) can recommend the most suitable type after testing your hearing.

For some people, an aid that delivers sound into the ear canal isn't appropriate. In these cases, hearing may be improved with a surgically implanted hearing system, such as a cochlea implant or a bone conducting hearing implant.

These systems still use a microphone to collect the sound at first. They then convert it into either an electrical signal or a vibration, and pass it to the inner or middle ear so the auditory system can process it.

With deafblindness, some of the conditions that affect hearing and vision can be treated with medicine or surgery. For example:

• cataracts can often be treated by surgically placing an artificial lens in the eye
• glaucoma can often be treated with eye drops or laser surgery (you can read more about treating glaucoma)
• diabetic retinopathy can be treated in the early stages with laser surgery

Some causes of temporary hearing loss can be treated too, such as a build-up of earwax or middle ear infections.