Deafblindness

About deafblindness

Deafblindness is a combination of sight and hearing loss that affects a person’s ability to communicate, access information and get around.

It’s also sometimes called “dual sensory loss” or “multi-sensory impairment”.

A deafblind person won’t usually be totally deaf and totally blind, but both senses will be reduced enough to cause significant difficulties in everyday life.

These problems can occur even if hearing loss and vision loss are mild, as the two senses work together and one would usually help compensate for loss of the other.

Signs of deafblindness

Deafblindness most commonly affects older adults, although it can affect people of all ages, including babies and young children.

In older people, it may develop gradually and the person themselves may not realise their vision and/or hearing is getting worse at first.

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 either a hearing or vision problem, it’s important to look out for signs that suggest the other sense may be getting worse too.

Read more about the symptoms of deafblindness

Seeing your GP

Visit your GP if you think your hearing and/or eyesight may be getting worse.

If you’re worried about a friend or family member, encourage them to speak to their GP.

It’s best to seek advice as soon as possible, as treatment for some underlying causes of deafblindness (see below) can be more effective if started early. Early diagnosis will also ensure the person is able to access local support services sooner.

Read more about diagnosing and assessing deafblindness

What causes deafblindness?

There are many potential causes of deafblindness. Some babies are born deafblind, but in many cases the hearing and/or vision loss occurs 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 associated with increasing age, such as cataracts

Read more about the causes of deafblindness

Living with deafblindness

A range of care and support services is available to help deafblind people.

Each deafblind person will have a different level of hearing and sight loss, which means they’ll have their own individual care needs.

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

• preserve and maximise any remaining sight or hearing the person has – this could involve treating underlying conditions like cataracts, wearing glasses or using a hearing aid
• teach alternative methods of communication – such as hand on hand signing or braille
• help retain or develop as much independence as possible – for example, by training the person to use a long cane, a guide dog or offering a communicator guide

Your local authority should arrange an assessment to determine exactly what care and support is needed.

Read more about managing deafblindness

Signs and symptoms of deafblindness

A person who’s deafblind won’t usually be totally deaf and totally blind, but both senses will be reduced enough to cause difficulties with everyday activities.

The hearing and/or vision problems may be present from birth, but in many cases one or both problems develop gradually 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, it’s possible they have some degree of deafblindness and should seek medical advice.

Signs of a hearing problem

Hearing loss can occur from birth or may develop gradually or suddenly later on.

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

• not hearing you if 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).

Signs of a vision problem

Vision loss can also be present from birth or 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 – keep an eye out for signs of hearing problems that could develop (see above).

Getting medical advice

Visit your GP if you notice any deterioration in your hearing or eyesight.

If you’re worried about a friend or family member’s vision and hearing, encourage them to speak to their GP.

It’s best to seek advice as soon as possible, as treatment for some underlying causes of deafblindness can be more effective if started early.

Early diagnosis will also ensure the person is able to access local support services sooner, and enable them to plan for the future (such as learning new communication methods).

Read more about diagnosing deafblindness and managing deafblindness

Causes of deafblindness

There are many possible causes of deafblindness. The condition can either be present at birth or develop later in life.

Deafblindness from birth

Deafblindness from birth is known as congenital deafblindness.

It can be caused by:

• problems associated 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 – a problem with the brain and nervous system that mainly affects movement and co-ordination
• foetal alcohol syndrome – health problems caused by drinking alcohol in pregnancy

Deafblindness later in life

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

A person with acquired deafblindness may be born without a hearing or sight problem and then later loses part or all of both senses. Alternatively, someone may be born with either a hearing or vision problem, and then later loses 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

Want to know more?

• Sense: Deafblindness causes and associated conditions
• Sense: A-Z of deafblindness causes

Diagnosing deafblindness

Deafblindness may be detected soon after a baby is born, or after tests carried out later in life.

Speak to your GP if you have any concerns about your or your child’s hearing and/or vision at any point.

If you’re worried about a family member or friend, try to encourage them to speak to their GP.

Newborn screening

If your baby is born deafblind, this will usually be picked up during newborn screening.

These are a series of checks carried out to see if your baby has any serious health problems from birth, including any problems with their eyes or hearing.

If no problems are picked up at this stage, they may be detected during routine checks as your child gets older.

Hearing and vision tests for adults

In most cases, deafblindness develops as a person gets older. It can happen gradually, so you may not notice that your vision and/or hearing are getting worse at first.

It’s therefore important to have routine eye tests to check for any problems. Adults should normally have their eyes tested every two years.

You can request a hearing test at your GP surgery at any point if you think you may be losing your hearing.

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

Their hearing and vision should continue to be regularly assessed even after they’ve been diagnosed, as the level of care and support they need will depend on how severely each sense is affected.

Specialist assessment

As soon as deafblindness has been identified, a specialist assessment should be arranged by the local authority.

The assessment should only be carried out by a specially trained professional who is able to identify the deafblind person’s abilities and needs. The assessment should include assessing their needs in relation to:

• communication
• one-to-one human contact
• social interaction
• emotional wellbeing
• support with mobility
• assistive technology
• rehabilitation

The assessment will also take into account the person’s current needs and those that develop in the future.

A deafblind person should have access to services suitable to their level of hearing and sight and their individual needs. Mainstream services aimed mainly at blind or deaf people may not always be appropriate.

Read more about the treatments and services available for deafblind people.

The charity Sense also has more information about the law and social care for deafblind people.

Managing deafblindness

It’s not always possible to treat the underlying causes of deafblindness, but a range of care and support services is available to help people with the condition.

Most deafblind people will still have some hearing and/or vision. The level of care and support they need will depend on how severe their hearing and vision problems are.

Individual care plan

The individual abilities and needs of a deafblind person should be assessed soon after they’re diagnosed. This will allow a tailored care plan to be drawn up.

The care plan will aim to:

• preserve and maximise any remaining sensory functions the person has
• teach alternative communication methods such as the deafblind manual alphabet (see below)
• help the person retain as much independence as possible – for example, by recommending they receive training to use a long cane or guide dog or through the provision of a communicator guide
• for young children, ensure their educational needs are met

Some of the main services, techniques and treatments that may be recommended as part of a care plan are outlined below.

Want to know more?

• Sense: Legal rights: social care, education and benefits
• Sense: Early support for your child

Communication systems

As deafblindness can make communicating by speech and writing difficult, alternative forms of communication may be necessary.

The main communication systems used by deafblind people include:

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

Want to know more?

• Sense: Methods of communicating with people who are deafblind
• Sense: Quick tips for communicating with people who are deafblind

Vision aids

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, including 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 offer a talking book subscription service, where books can be ordered and delivered directly to your home for a small annual fee.

Want to know more?

• Sense: Entertainment and virtual assistants
• RNIB: Using technology

Hearing aids and implants

Some deafblind people may benefit from wearing a hearing aid. There are various hearing aid styles available to suit different types of hearing loss and personal preference.

Hearing aids use microphones to collect the sound from the environment, amplify it and deliver it into the ear canal of the wearer so that it can be processed by the auditory system. An audiologist (hearing specialist) will be able to recommend the most suitable type of aid after testing your hearing.

For some people, hearing aids that deliver the sound into the ear canal are not appropriate. In these cases, hearing may be improved using a surgically implanted hearing system, such as a cochlea implant or bone conducting hearing implant.

While these still use a microphone to collect the sound initially, they then covert that sound into either an electrical signal or vibration, passing it to the inner or middle ear for processing by the auditory system.

Want to know more?

• Sense: Hearing technologies
• Action on Hearing Loss: Hearing aids

One-to-one support

Every deafblind person is entitled to help from a specially trained one-to-one support worker if they need it.

Depending on the person’s situation, this may be a:

• communicator guide – someone who works with people who have become deafblind later in life, to offer the support the person needs to live independently
• interpreter – someone who acts as a communication link between the deafblind person and other people, using the deafblind person’s preferred method of communication
• intervenor – someone who works with children and adults who were born deafblind, to help them experience and join in the world around them as much as possible

Want to know more?

• Sense: Communicator guides
• Sense: Intervenors

Treating underlying conditions

Some conditions that affect hearing and vision can be treated using medication or surgery. For example:

• cataracts can often be treated by surgically implanting an artificial lens in the eye
• glaucoma can often be treated using eye drops or laser surgery – read more about treating glaucoma
• diabetic retinopathy can be treated in the early stages using laser surgery

Some causes of temporary hearing loss are also treatable, such as a build-up of earwax or middle ear infections.