Cici and Izzy’s story – “I hope sharing our experience helps other young carers”
Cici (28) and Izzy (23) share their experiences of having a parent living with young onset dementia and becoming a carer at a young age.
Many people with dementia have trouble hearing, distinguishing between and interpreting sounds. This can make the world a confusing place. We explain why this might happen, and how you can help.
What is the connection between dementia and hearing difficulties?
Dementia can affect how people interpret information from the senses. This can make it difficult to make sense of sounds, even if the person does not have problems with their hearing.
Dementia-related issues with making sense of sounds can happen to people of any age with dementia and are not related to changes in the ears themselves. A person with dementia may:
- have trouble working out what is said to them and need longer to process it
- struggle to distinguish between multiple sounds or conversations
- be startled or frightened by loud or sudden noises
- have problems identifying what a sound is, or distinguishing one sound from another
As a result, it may be difficult for the person to process and understand what they are hearing and communicate their response. This could lead to them becoming withdrawn and socially isolated. It may trigger feelings of anxiety, frustration, confusion and distress.
Age-related hearing loss vs dementia-related hearing difficulties
People often experience some degree of hearing loss as they get older. If a person seems to be struggling to hear and understand sounds, it could be a sign of dementia, but it could also be a sign of hearing loss. The person should have a hearing test to see whether they need a hearing aid.
If a person with dementia also has age-related hearing problems, this can cause extra communication challenges. So it is important to make sure the person has a hearing aid if they need one and to check regularly that it is working.
Common causes of hearing problems in dementia
A person with dementia may experience hearing issues due to dementia, problems with their ears or other medical issues.
Changes in the brain caused by dementia
Dementia can cause something called central hearing loss. This is when the brain struggles to process sounds, rather than there being a problem with the ears. Unlike other types of hearing loss, it cannot be improved with hearing aids.
Ear-related hearing loss
A person with dementia may have hearing loss as well as dementia. This is when the ears find it harder to pick up sounds, and is also called peripheral hearing loss. Peripheral hearing loss is common in older people. If the person you care for appears to be having hearing difficulties, it is important to book a hearing test, as they may benefit from a hearing aid.
Other health issues
If a person with dementia seems to be having hearing problems, it could also be caused by another health issue. For example, the person may simply have a build-up of wax, a cold or an ear infection that is affecting their hearing. A GP will be able to check to see if this is the case.
Can hearing loss increase the risk of dementia?
Recent studies have suggested that people with hearing loss have an increased risk of developing dementia. It is not clear yet if hearing loss makes it more likely that someone will develop dementia, or if dementia itself makes it more difficult for people to hear.
One theory is that when a person has hearing loss, their brain has to work harder to understand sounds. This may lead to changes in the brain that affect memory and thinking. Another possible explanation is that people with hearing loss are also more likely to withdraw from socialising. Social isolation and depression are both risk factors for dementia.
The impact of untreated hearing loss
It is not yet clear why hearing loss increases the risk of dementia. But evidence shows that the longer someone lives with hearing loss without a hearing aid, the higher the risk of developing dementia. And the more severe the hearing loss, the higher the risk. This is one reason why it is important to have a hearing test as soon as hearing problems are suspected. It is also important to make sure that any hearing issues are found and treated (for example, with a hearing aid) before dementia assessment. This will make the diagnosis more reliable.
Types of dementia most linked with hearing problems
The links between dementia and hearing problems are still not fully understood. But research suggests there may be links between hearing loss and certain types of dementia, such as vascular dementia and Alzheimer’s disease.
Vascular dementia and hearing loss
There could be a link between vascular dementia and hearing loss through the blood system. Vascular dementia is caused when blood flow to the brain is restricted. Some studies have shown that the parts of the brain that process sound are especially vulnerable to damage.
Alzheimer’s and hearing loss
Some studies suggest that people who develop hearing loss as an adult are more likely to also develop Alzheimer’s disease. However, the studies are not conclusive. Experiencing hearing loss does not mean that a person will develop Alzheimer’s disease or any other form of dementia.
What are some common signs of hearing problems in people with dementia?
Identifying hearing difficulties in someone with dementia can be challenging, as the symptoms of the two often overlap and can mask one another. Struggling to follow a conversation, for example, could be a symptom of either dementia or hearing loss, making it hard to tell the underlying cause. However, carers and family members should look out for the following signs that may be related to the ears rather than dementia:
- frequently asking for things to be repeated
- turning the television or radio up to a high volume
- appearing not to hear sounds in one ear, or noticing a difference between the two ears
- difficulty hearing soft or high-pitched sounds — such as phone conversations, or children’s voices — which can be an early sign that the delicate hair cells in the ear have been damaged
Symptoms of hearing loss can start gradually and be difficult to notice, which makes early detection and treatment particularly difficult. Because of this, it is important for a person with dementia to have regular hearing tests.
The effects of hearing difficulties on daily life with dementia
Hearing difficulties can have various impacts on a person living with dementia. It can affect communication in the workplace, social connection and their ability to understand what is happening around them.
Challenges with communication and social connection
Hearing difficulties may make it difficult for a person with dementia to process and understand what they are hearing and communicate their response. This could lead to them becoming withdrawn and socially isolated, and trigger feelings of anxiety, frustration, confusion and distress.
If the person works, it is helpful for them to tell their employer and colleagues about their dementia diagnosis and any difficulties with hearing or processing sound. Their employer may be able to put processes in place to support them. For example, emailing them details of a task rather than telling them verbally.
It is also a good idea for someone to attend medical and other appointments with the person with dementia to help them communicate and understand key information.
Misunderstanding sounds
Sometimes a person with dementia hears sounds but is unable to give them context. For example, a washing machine beeping or car doors slamming could cause anxiety if they do not understand the cause of the noise. Explain what is happening and calmly reassure them that there is nothing to worry about.
Hearing voices or sounds that are not there
Hallucinations can be a symptom of dementia. This can include auditory hallucinations – hearing things that are not there. A person may hear sounds like whispering, talking, banging or music that is not there. A person with hearing loss and dementia may also be at higher risk of auditory hallucinations as the brain struggles to manage and interpret sensory input
Learn more about hallucinations and how to support someone experiencing them
What should I do if I suspect a family member with dementia has hearing loss?
If you suspect that a family member with dementia may also have hearing loss, the first step is to speak to their GP. They can check for any straightforward causes of hearing difficulty — such as a build-up of earwax, which is a common and easily treatable problem in older adults. If earwax is not the cause, your doctor will likely refer you to an audiologist, who will test the person’s hearing and may suggest fitting the person with a hearing aid.
In the meantime, there are practical steps you can take at home to help, like reducing background noise from fans, phones, and loud appliances to make it easier for the person to hear and follow conversations.
Support and treatments for hearing loss in dementia
There are various treatment and support options available for people experiencing dementia and hearing loss.
NHS advice on hearing loss
Hearing tests are available in many large pharmacies and opticians. These are often free, particularly for older people. They can usually be booked at relatively short notice. Alternatively, the person can be referred by their GP to an audiologist (hearing specialist) for a free NHS hearing test. This may involve a longer wait.
Other resources:
- NHS: hearing tests
- RNID: the national hearing loss charity
- RNID: free online hearing check
- ReSound: find a UK audiologist
Specialist audiologists
Some audiologists specialise in treating people with dementia and can tailor hearing tests to meet their needs. If a person with dementia is diagnosed with hearing loss and needs a hearing aid, this may be hard for them to adapt to, so a dementia specialist audiologist can provide extra support and advice.
Hearing aid maintenance
If the person is already a hearing aid user, it is important to keep their hearing aid maintained and check it regularly to make sure it is working properly. Hearing aid batteries need to be changed frequently, and hearing aids often beep when they need to be changed, which may cause confusion.
If the person with dementia has an NHS hearing aid, this is on long-term loan. The usual lifespan of a hearing aid is around three years. After this, the components start to degrade and the person should get a new one. All replacements, repairs and new batteries are free of charge for NHS hearing aids.
Telecare systems
It is important to consider the person’s safety if they are having difficulty processing sounds – for instance, they may not recognise a smoke alarm beeping. If this is the case, there are telecare systems that link to smoke alarms and carbon monoxide detectors and alert a call centre if they are activated. If the person you care for would benefit from this, contact your local authority’s social services department.
Adapted devices
If the person with dementia has difficulty processing sounds like the phone ringing or a kitchen timer sounding, consider using devices or settings with other ways of alerting them, such as vibrating or flashing. If they struggle to use the phone, adjusting the ringtone and speaker volume may help. For some people, communicating by text or email is easier.
Specialist care for British Sign Language users
If a person was deaf before their diagnosis of dementia and is a British Sign Language (BSL) user, they may need more specialist support. For example, if they have a home carer or live in a care home, it is helpful if their carer understands sign language. They may need to learn some basic signs, such as ‘toilet’, ‘thirsty’, ‘hungry’, or they could use pictures to help with communication.
Just as hearing people with dementia may develop difficulties communicating verbally, BSL users may experience communication difficulties such as forgetting or mixing up signs. Some people may revert to signs they used in childhood or have reduced hand movements. Giving the person lots of time for communication, and being aware of non-verbal cues – such as pointing, gestures or facial expressions – can be helpful.
Other resources:
Tips for supporting someone with dementia and hearing problems
If you believe that someone with dementia is struggling to hear, understand and process sounds, try to recognise this and respond sensitively.
If the person with dementia finds noise overwhelming or distressing, try to avoid places with loud or distracting background noise, such as restaurants and shopping centres. These places might overwhelm and confuse them. If you do go to these places, then try to choose quieter times. Wearing ear plugs, ear defenders or noise-cancelling headphones may help, but be aware they could make communication harder.
In noisy social situations such as parties and weddings, try to provide a quiet place for the person with dementia to take time out, such as a spare room.
Some larger supermarkets have ‘quiet hours’ that offer a calmer shopping environment, with music turned down and other noises kept to a minimum. You can check with your local supermarket if this is available. Cinemas and theatres may also offer performances for people with dementia and other sensory issues, with reduced volume and the lights left on. You can check yourlocalcinema.com for details of accessible film showings near you.
Try to avoid loud and unexpected noises such as slamming doors, fireworks, crackers and party poppers.
Practical tips for everyday communication
Communication can be more challenging when a person has dementia and hearing problems. But there are things you can do to aid better communication.
Reduce background noise
Turn off the television, radio or background music when you are talking to the person with dementia. This will help them concentrate on what you are saying.
Use eye contact and body language
Face the person and make eye contact. 60-80% of communication is non-verbal, and you can convey a lot through your tone of voice, gestures and body language. Many people with dementia and hearing loss have also learnt to lip read, so facing them so they can see your mouth can help them understand you.
Speak slowly and be patient
Speak slowly and clearly, using everyday language. Give the person time to process what they are hearing and react or respond. Do not be too quick to jump in and ask them if they have heard and understood you. If, after a pause, the person seems not to have heard you or is having difficulty making sense of what you said, you may wish to prompt them gently. But be aware that some people find this frustrating and belittling. Do not:
- raise your voice or shout – this can make your speech harder to understand
- cover your mouth when you speak
- over-exaggerate your words when you speak
Try written or visual communication
Many people with dementia find it easier to understand written, rather than spoken, words. You could try writing things down if the person is struggling to hear or interpret what you are saying. You could also use pictures to support communication. For example, by showing them pictures of food and drink to find out what they would prefer.
Get others to co-operate
Tell other family members and friends what they can do to help the person with dementia understand and process sounds. For example, tell them what communication strategies work well. If there are children or teenagers in the home, explain that the person has difficulty with sounds and suggest how they can help. For example, by using headphones for listening to music or playing computer games, and avoiding speaking over each other.
Sources of support
If you would like to speak to a dementia specialist Admiral Nurse about someone’s hearing or difficulty with sounds, or any other aspect of dementia, call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-9pm) or email helpline@dementiauk.org or you can book a phone or virtual clinic appointment with an Admiral Nurse.
If you are deaf or hard of hearing and would like to get free, expert advice from a dementia specialist Admiral Nurse you can access virtual clinic appointments supported by a qualified BSL interpreter. These are available on the first Tuesday of every month at 9.30am, 11am, 1.30pm and 3pm.
Book a virtual clinic appointment with an Admiral Nurse and BSL interpreter
Dementia UK resources:
