Caring for someone with sensory impairments
People with sensory disabilities include those who:
- are deaf or have an acquired hearing loss
- are visually impaired or blind
- are deafblind, i.e have a significant combination of hearing and sight loss (see below)
People who have autism often have sensory disabilities too. They may experience sound, smell, taste and touch differently to how people usually experience them. Autism can be explained as an ‘imbalanced set of senses’ as well as have difficulties with social interaction and communication. We’ve got a separate page about support for carers who look after someone with autism.
Caring for someone for who is deafblind
Deafblindness is defined by both hearing and sight loss that, when combined, severely impacts the daily life of the person. Despite suggesting a complete sensory loss; most people that are considered to be deafblind have some level of residual sight and/or hearing.
There are around 250,000 people in the UK who have a serious impairment of both vision and hearing .
If people develop sight and hearing problems later in life, this is called acquired deafblindness. This may be due to an accident, illness or as a result of ageing. In some cases, people may be born with a genetic condition such as Usher syndrome, which may mean that they progressively lose their sight and / or hearing.
Approximately 75% of deafblind people are elderly. This is defined as a significant hearing and sight loss that happens as a part of ageing but it can be far more severe than ‘just old age’ and the impact of a major dual sensory loss can be huge, leaving an older person feeling lonely and isolated.
When someone is born with combined sight and hearing difficulties this is called congenital deafblindness. Conditions that can cause this include congenital rubella syndrome or CHARGE syndrome. People who are born deafblind often have additional disabilities, including learning and physical disabilities.
The NHS website has further information about deafblindess including causes and management.
Getting support as a carer
Caring for someone with a sensory disability can be tough both physically and mentally so it's important to take advantage of the help and support on offer.
The where to start section has information about registering with your GP, carers assessments, benefits for carers and emergency planning.
Many carers find talking to other carers in a similar situation one of the best ways to get support. You can find details of local carer support groups using the Carers Directory.
Lots of carers also use online communities to get support and advice. Forums specifically aimed at sensory loss include:
- Deaf plus is an online community for people who are deaf and their carers
- Action on Hearing Loss is an online community and blog.
It may be that the person you care for has additional needs on top of their sensory disabilities. You can browse the ‘caring for someone….’ pages for further advice and information about different conditions and where carers can get support.
Organisations who can help you
Sense is a charity that provides advice and support for deafblind people and their carers. Their helpline numbers are tel: 0300 330 9256 and 020 7520 0972 (same numbers for textphone). Alternatively, their email address is: firstname.lastname@example.org
Deafblind UK is a national charity that supports deafblind people and those with progressive sight and hearing loss. You can contact their helpline for information and advice on tel: 01733 358 100 (both voice and text calls). You can also email them: email@example.com
Derbyshire County Council Adult Care's Deaf Team support people who are deaf and their carers to access social care support. Alongwith other local agencies, they hold drop-in information events around the county. Dates and times are listed on the 'caring for someone with a hearing impairment' page.
Supporting the person you care for
If the person you care for has acquired their condition through old age or Usher syndrome they may struggle to come to terms with the fact their condition limits their independence. This is likely to affect their mood and this may put a strain on your relationship with them as the balance changes. You can find advice and details of organisation who can offer support on the dealing with changing relationships page.
One of roles as a carer may be to physically guide the person you care for while out and about. Deaf Blind UK have the following tips for helping a deafblind person get around:
- Not all deafblind people need to be guided
- Respect the guiding preferences of the deafblind person
- When guiding you should stand next to deafblind person on their preferred side, and be half a step to a step ahead of them
- Use the grip the deafblind person prefers, there are three generally accepted grips
- Linked arm grip, the deafblind person links their arm through yours
- Holding elbow grip, the deafblind person holds your arm just above the elbow
- Hand on shoulder grip, the deafblind person places their hand on your shoulder
- Walk at the speed of the deafblind person, NOT yours. Consider the person’s age and whether they have any other disabilities
- You may have to indicate obstacles that the deafblind person wouldn’t see, like steps, stairs or chairs in a corridor
- Think ahead, use common sense.
As a carer of someone who is deafblind one of your biggest challenges will likely be communicating with the person and helping them communicate with others, particularly if their condition is acquired in later life.
Sense has information and details of communication methods available for people who are deaf blind, both for those born deafblind and those who have acquired the condition.
They also have some basic top tips. As a carer it is likely you do these things already. However, it may be useful to share these tips with wider family, friends and professionals involved in the care of the person you look. You could also put some of the more relevant tips in your carers emergency plan information so emergency responders can use them.
- Make sure you have the person’s attention before trying to communicate with them
- Gently touching the top of the 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.
Accessible Information Standard
All organisations providing health and social care services must follow the Accessible Information Standard. The Standard is particularly aimed at people who are deafblind and says that if a person requires information in an alternate format due to a health need or disability, they must get information in their chosen format. This includes large print, Braille, BSL, audio or an interpreter.
Providers must ask people if they need alternate formats and record that on their medical or social care records for future reference. The Standard has been law since 2016 but if a provider doesn't ask you or the person you care for if you need information in alternate format, make sure you let them know what your requirements are.
Derbyshire Libraries offer a range of services and information for people with sensory disabilities including equipment and a transcription services that converts documents into Braille, large print and audio for a reasonable price. Email firstname.lastname@example.org, tel: 01629 533 444 or call in to your local library.
Social care support
If you think the person you care for needs social care support, either because of their sensory disabilities or any additional needs, you can contact Call Derbyshire on tel: 01629 533190 for an assessment. If they are able to communicate through use of BSL, the person you care for will be able to speak to Call Derbyshire staff themselves using the BSL video relay services.
You can also contact Call Derbyshire by text us: 86555 or email: email@example.com
999 SMS Text Service
If the person you care for needs to contact the emergency services but would struggle to communicate over the phone, they can now text the police, fire or ambulance services using the 999 SMS text service. The service is also useful for those living in rural areas where the signal isn't strong enough to make a call but could send a text. To use the service you first need to register by texting 'register' to 999. You'll then be sent further instructions on how to use the service. You can also find out more by reading this guidance sheet.
Other helpful websites
DHCFT November 2019 Newsletter…
Derbyshire Healthcare NHS Foundation Trust Newsletter November 2019 In this issue: Carers Rights Day: Helping you find your…
25 Nov 19