Deafblindness (Dual Sensory Loss): Care Staff Guide

Deafblindness, also called dual sensory loss, means having both sight loss and hearing loss. The two together create challenges that are very different from either one alone, and most deafblind people in the UK are older adults, many of whom are supported by care staff. Because the loss often develops gradually, it can go unrecognised or be dismissed as normal ageing. This guide, based on information from Deafblind UK and the Royal National Institute of Blind People (RNIB), explains what deafblindness is and how care staff can communicate and support people well. It links to our guides on hearing loss and hearing aid care, aphasia and communication support and equality and diversity training.

What is deafblindness?

Deafblind UK defines deafblindness as sight and hearing loss that together are severe enough to hinder communication, access to information and getting around. It is a distinct condition, not simply hearing loss plus sight loss. The loss can range from difficulty seeing or hearing the television to having no sight or hearing at all, and many deafblind people keep some hearing or vision. As Deafblind UK says, it affects everyone differently.

Causes

Deafblind UK lists a range of causes, including ageing, eye conditions such as macular degeneration, cataracts and glaucoma, Usher syndrome, brain damage from conditions such as meningitis, encephalitis, stroke or severe head injury, complications of premature birth, infections before birth such as rubella, toxoplasmosis and cytomegalovirus, genetic conditions such as CHARGE syndrome and Down's syndrome, and cerebral palsy. RNIB explains that loss can be congenital, present from birth or before language develops, or acquired, developing later in life.

How common is it?

Deafblind UK states that there are nearly 400,000 deafblind people in the UK and that this is projected to exceed 600,000 by 2030 because of an ageing population. The publication date of that information is not stated, so please check Deafblind UK for the latest figures. RNIB says it is more common in older people, although it affects people of all ages, and the risk of having both impairments rises with age.

Why it is easy to miss

RNIB notes that gradual onset is often unrecognised or seen as normal ageing. A person who is withdrawn, confused, does not respond when spoken to, or avoids activities may in fact be struggling to see and hear. Dual sensory loss can be mistaken for dementia, and it can also make dementia harder to assess. A clinician should check both sight and hearing whenever a person's behaviour or cognition changes.

Communication methods

Deafblind UK lists these methods, which people may use alone or in combination:

• speech and residual hearing
• lipreading
• British Sign Language and hands-on signing
• Makaton
• Deafblind Manual, a touch-based alphabet
• Block, in which letters are drawn on the hand
• braille, screen readers and adjusted colour and text size for reading

Always find out which method a person prefers, record it in their care plan and use it consistently.

Communication tips for carers

RNIB suggests the following:

• get the person's attention first, for example with a gentle touch on the upper arm
• say clearly who you are
• reduce noise and adapt the setting
• speak clearly and a little slower, without shouting
• keep your face visible, and do not eat, smoke or cover your mouth
• use gestures and facial expressions
• rephrase if needed, and take regular breaks
• try writing, varying the size of letters and the colour of paper
• use a text relay service for phone calls

Support available

Deafblind UK highlights minor adjustments, planned technology, communicator guides and support workers for everyday tasks. RNIB points to the charity Sense, which offers free resources for families and staff, including a checklist to help spot possible dual sensory loss. Where a person may need care and support from the local authority, ask the person or their family to request an assessment, and make sure it is carried out by someone with the right skills.

Practical support for care staff

• Check hearing aids, glasses and lighting every day. Make sure they are clean, working and worn.
• Tell the person what you are going to do before touching them or moving them, and when you are leaving.
• Keep the environment consistent. Do not move furniture without telling the person.
• Allow extra time for conversations, meals and moving around.
• Prevent isolation. Dual sensory loss can lead to loneliness, so plan meaningful contact and activity.
• Share information at handover. Make sure all staff, including agency workers, know how to communicate.

Frequently asked questions

Does deafblind mean completely deaf and blind?

No. Many deafblind people have some sight or hearing. The term describes combined loss that affects communication, information and mobility.

Can dual sensory loss be mistaken for dementia?

Yes, so both senses should be checked when behaviour or thinking changes.

Who can help staff to learn more?

Sense, Deafblind UK and RNIB all offer resources, and the health and social care learning available through Learnsignal CPD can help you build your skills.

This article is general information for care staff, based on information from Deafblind UK and RNIB, and does not replace the advice of a person's own clinicians or sensory services team. If you are worried about someone's health right now, contact their GP, NHS 111 or, in an emergency, call 999.