Dual sensory loss

People of all ages can have a sight or hearing impairment. It may have been from birth, or due to deterioration later in life. Deafblindness affects a person's ability to communicate, to access all kinds of information, and to get around.

Congenitally deafblind

A term that describes any child who is born with a sight and hearing impairment or develops sight and hearing loss before they have developed language in their early years.

Acquired deafblindness

A person who loses their sight and hearing after they have developed language in their early years is said to have acquired deafblindness.

Usher syndrome

Usher syndrome is a genetic or inherited condition that affects hearing, vision, and balance. The sight loss is caused by an eye condition known as retinitis pigmentosa (RP) which leads to a gradual and progressive reduction in vision.

CHARGE

CHARGE is a challenging genetic condition that can affect all ages. The most common problems are with the ears, eyes, heart, and nose - although there are a wide range of other difficulties that people can have.

Most deafblind people in the UK are older people who have developed hearing and sight loss in later life. The older someone is, the more likely they are to have both a visual and a hearing impairment.

Often this hearing and vision loss comes on gradually. Older people themselves, and others around them, may not recognise or understand what is happening. This dual-sensory loss often goes unrecognised, or is seen as a natural consequence of ageing about which nothing can be done.

Sense is a national charity that specifically supports people who are deafblind. They produce free, easy-to-use resources for family members and staff that support older people with dual-sensory loss. They also produce a “Fill the gaps” checklist, which can be used to see if a relative or someone you support has dual-sensory loss and “The Good Life” - a guide to understanding what your relative is going through, how you can help, and where to go for more specialist support. Both of these can be downloaded from the Sense website.

Some of the specific methods for communicating with deafblind people require training and experience.

But there are simple things you can consider that make it possible to communicate with many deafblind people. Here are some quick tips:

• Make sure you have the person's attention before trying to communicate with them
• Gently touching the top of the deafblind person's arm is a common way of attracting their attention without startling them
• Identify yourself clearly
• Check that you are in the best position to communicate
• Avoid noisy places and background noise
• Adapt the conditions to suit the individual
• Speak clearly and a little slower, but don't shout
• Make your lip patterns clear without over-exaggerating
• Keep your face visible - don't smoke, eat, or cover your mouth
• Use gestures and facial expressions to support what you are saying
• If necessary, repeat phrases or re-phrase the sentence
• Be aware that communicating can be hard work. Take regular communication breaks
• Try writing things down. You might need to experiment with different sizes of letters and different coloured paper and pens
• For phone conversations consider using a text relay service.