Dementia overview

It is important that speech and language therapy services are made available for people living with dementia as individuals with dementia often experience difficulties with speech, language and communication and / or eating, drinking and swallowing. Speech and language therapy services help reduce the impact of these difficulties.

Guidance for our members is also available

Last updated: May 2024

Page content

What is dementia?
Primary Progressive Aphasia
Speech, language and communication in dementia
Supporting speech, language and communication
Eating, drinking and swallowing in dementia
The role of speech and language therapists
Key organisations and resources
Contributors

What is dementia?

The term dementia is used to describe a collection of symptoms, including a decline in memory, reasoning and communication skills. There are lots of different causes of dementia.

More details of what dementia is can be found in the Alzheimer’s Society factsheet.

Alzheimer’s disease is the most common type of dementia. Other common types include vascular dementia and mixed dementia. There are also less common types of dementia, including:

Symptoms of these rarer types of dementia can include difficulties with language, vision, behaviour and movement. Because rare dementias are more likely to develop before the age of 65, the diagnosis and symptoms can cause additional problems with work and family life, such as caring for young children.

See Rare Dementia Support for further information.

It is important to recognise that in some languages there is no word for dementia. Typically, other words might be used including forgetfulness or confusion. More information about responding to the needs of a wide range of ethnic minority groups can be found in the Alzheimer Europe and NHS England document Intercultural Dementia Care guide.

Speech, language and communication in dementia

People use speech, language and communication to share information, express what they are thinking, express how they are feeling, and socialise with other people. Speech is how we produce spoken words using different sounds. Language is how we understand and use words, both written and spoken. Communication is how we share information with others, either verbally using spoken words or non-verbally, such as written words, gestures, facial expressions and body language.

Problems with speech, language and communication are possible symptoms of dementia. These problems happen because the disease damages nerve cells in the part of the brain responsible for communication skills. The symptoms are likely to be progressive, meaning they change and worsen over time.

Different types of dementia will affect speech, language and communication in different ways. Speech and language therapists can help individuals understand their diagnosis and how it is affecting their communication and provide exercises and strategies to help them manage the changes.

The types of speech, language and communication difficulties a person living with dementia may notice include:

difficulties starting a conversation
trouble finding the right word
difficulties getting the words out and putting words into sentences
difficulties producing the right sounds
saying “yes” when they mean “no”
forgetting what things are called or what they do
difficulty understanding what objects are, who people are, what words mean
repeating words and phrases
using one word when they mean another
not understanding what has been said or missing the details when others are speaking
not understanding non-verbal communication (tone of voice, gestures, pictures)
speaking less or not speaking at all
needing more time to speak
long pauses and slow speech
going back to their first language
using words that other people cannot understand
having difficulty following conversations
becoming distracted or forgetting what they were saying
difficulties with spelling and writing
difficulties controlling their behaviour or mood (e.g., saying something out of character, crying or laughing when normally they would not).

There are different things that can make speech, language and communication more difficult. For example, tiredness, pain, illness, the environment and the relationship you have with the person you are communicating with. It might be easier for a person to speak to someone they know well in their own home and more difficult to talk to a stranger in a noisy restaurant. Speech, language and communication problems can also vary from day to day or from hour to hour depending on the environment and how a person is feeling.

People living with dementia may also have sight or hearing problems, which can make it harder to communicate. More details of sensory impairment that might impact communication can be found in this Alzheimer’s Society factsheet.

As the disease progresses, there may be increasing problems with speech, language and communication, such that a person living with dementia can no longer communicate as they used to. This can be distressing and frustrating for the person living with dementia and the people who care for and support them.

Working with a speech and language therapist soon after or early in the diagnosis of dementia can improve understanding of how communication is or is likely to be affected and can help to establish good communication practices that can change with the person’s needs. However, while receiving early input is ideal, it is never too late to seek advice from a speech and language therapist. For further information, see the role of speech and language therapists.

Supporting speech, language and communication

As all people living with dementia are different and therefore experience dementia differently, individualised strategies, provided by a speech and language therapist, are most helpful. However, here is some general advice for how a person with speech, language and communication difficulties could be supported by others:

Smile and use open and relaxed non-verbal communication skills e.g., body language and eye contact.
Check the person is comfortable and is as free as possible from distractions and not in pain or experiencing illness.
Reduce distractions in the environment (such as noise) and ensure adequate lighting
Make sure the topic of conversation is of interest to the person living with dementia and that they are reminded periodically what is being talked about.
Support the person to express themselves, giving time and encouragement.
Face the person when speaking to them.
Be open to different ways of communicating, not just speaking.
Use a total communication approach – for example gesturing, drawing, writing, using facial expressions and objects as alternatives or to supplement speech.
Avoid ‘test’ questions – don’t ask questions you already know the answer to in order to test the person with dementia – try and re-frame, e.g., “Lydia, your granddaughter, came to our house yesterday” rather than “Can you remember who came to visit us yesterday?”
Listen and watch for non-verbal signals (body language / facial expressions) – these will give you information about how the person is feeling and may also provide clues as to whether they are following what you are saying.

There are brain health benefits of supporting and maintaining communication, as one of the risk factors for dementia is infrequent social contact. This is an emerging area, however benefits in Cognitive Stimulation Therapy (CST) have already proven to be positive. CST can include socialising, discussion of news events and other language-based activities. See Cognitive Stimulation Therapy from Alzheimer Scotland.

Maintaining independence

In order to support a person living with dementia to maintain their independence, the following support strategies can be useful:

Offer a small number of choices – this may include visual choices, e.g., showing the person two or three different things for them to choose from rather than just giving the choices verbally.
Talk about topics the person with dementia is familiar with and / or is interested in.
Give the person time to talk and to process what has been said to them.
Share non-verbal activities e.g., looking at photographs, watching documentaries of interest, going for walks, dancing and listening to music.
Try not to jump in to guess the person’s words or finish their sentences.
Encourage the person to keep doing their usual daily activities, with support if this is needed.
Enable the person to lead the conversation, even if the meaning isn’t clear – observe their tone of voice and gestures.
Respect the person’s feelings and experiences, even if you might perceive the same thing differently.

Setting up for success

There are several things people can do to support people living with dementia and set them up to succeed with communication:

Ensure the person has their hearing aids if they need them, with charged batteries, and support them to access regular hearing tests.
Ensure the person has their glasses if they need them and support them to access regular eye tests.
Reduce background noise and distractions e.g., turn off the television or radio.
Ensure adequate lighting.
Make sure the person can see you approaching them, and get their attention before starting a conversation.
Ensure you are in the person’s eyeline and sitting or standing at a distance they are comfortable with.
Make the topic you want to talk about clear at the start of the conversation.
Avoid using questions if you can use another form of words instead, e.g., “I think that is a good TV programme. It looked like you enjoyed it.”
Create a Life Story document – see creating a life story for a person with dementia. This can be used to start conversations with an individual.

Responding to changes

Some strategies may be more helpful as the disease progresses. It is important to note that the success of strategies may vary with ‘good days’ and ‘bad days’.

Tips for the person who is experiencing communication difficulties:

If you are struggling to find a word, try to describe the word you’re looking for or perhaps draw or mime it.
Try talking around the subject and the word may ‘reappear’ for you.
If you feel frustrated, take a breath and walk away if you need to.
Try to keep doing language-based activities e.g., crosswords, quizzes, and conversations.
Think about what you need from communication partners and let them know what would be helpful e.g., to slow down their speech, repeat key information or write it down. A speech and language therapist could help you to work out what helps you.

Tips for people supporting people with communication difficulties:

If the person says the wrong word but you understand the meaning, don’t interrupt to correct them.
Support what you’re saying with visual cues e.g., objects, photos, drawings, gestures or mime.
Provide one piece of information or one subject at a time.
It may be helpful to offer specific choices e.g., “would you like to go for a walk or something else?” rather than “what would you like to do?”.
Repeat important information if needed.
Write information down, including on calendars and as reminders.
Access support e.g., family or community networks.
Recognise that the person may not find it so easy to remember specific details but may still enjoy listening to a conversation.
Always include the person in conversation and never talk about the person in front of them as if they are not there as they may understand what you are saying.
Accept the person’s reality, even if it is different to your own – for more information and ideas about this, you could look at the social care for institue and excellence website or watch this video.
Try to respond to how the person is ‘feeling’ even if words don’t make sense.
Ask the person how they would like you to help them. e.g., “When you can’t find the word, what do you want me to do?” This will differ between conversation partners, depending on their relationship. There may be one strategy that works best but remember it won’t work 100% of the time and it will need to be reviewed every so often to see if it’s still the help the person needs.

Progression of dementia is different for everyone. As the disease progresses people with dementia may talk less, they may have increased difficulties finding the words and it may be difficult for the communication partner to follow what is being said. If you are a carer struggling with this, please seek assistance from a speech and language therapist. A speech and language therapist can provide support with communication even when a person’s dementia is very advanced.

Eating, drinking and swallowing in dementia

People living with dementia may experience eating, drinking and swallowing difficulties. Eating and drinking difficulties refer to anything that might impact a person’s ability to eat and drink, from deciding what to eat and drink, preparing food and drink and bringing the food and drink to the mouth. Swallowing difficulties refers to difficulties that can occur once food is put into the mouth and before it reaches the stomach.

Eating, drinking and swallowing difficulties may occur due to:

environment (e.g., distractions, being in bed, too much noise, an unfamiliar place)
trouble with recognising or using cutlery
change in muscle strength, movement and coordination
dislike of the texture of certain food
forgetting about having already had something to eat or drink, or believing having already had something to eat or drink
confusion or being unwell
not being aware of hunger or thirst and therefore not eating and drinking enough or eating and drinking too much
taste changes (e.g., preferring sweet flavours)
sensory changes (e.g., not being aware of extreme temperatures of food or drink, or not recognising that food or drink is still in the mouth)
not recognising the difference between edible and non-edible items
not wanting to eat in front of other people or general avoidance of eating or drinking due to concerns about dignity / feelings of embarrassment
provision of food and drink that does not match preferences or cultural needs.

The involvement of speech and language therapy services can be helpful at any stage. Working with a speech and language therapist soon after or early in the diagnosis of dementia can raise awareness of the signs of eating, drinking and swallowing difficulties and strategies that may be beneficial in helping the person continue to enjoy their food and drink. As dementia progresses, there may eventually come a time when the person can no longer eat and drink as they used to and may eat and drink less. This can be distressing for the person as well as people who provide care and support. It is never too late to seek advice from a speech and language therapist.

Maintaining independence

It is good for people to eat as independently as possible, to maintain wellbeing, dignity and quality of life. Some people with dementia may need help at mealtimes, and there are different types and amounts of assistance that can be given, depending on the person and the situation. Careful judgment may be needed when thinking about how much assistance to give. It is important to enable the person to be as independent as possible, but some people may benefit from assistance at mealtimes to help them meet their nutrition and hydrational needs.

There are several actions or strategies which might help someone living with dementia to be more independent at mealtimes. These include:

finding out about the person’s eating and drinking preferences, ensuring that these are regularly reviewed
ensuring they are using their dentures, glasses and hearing aids if these are required
maintaining good oral care
reducing distractions, e.g., turning off radio / television
describing the meal positively – appearance, smell, taste etc.
giving verbal encouragement to eat and drink independently
cutting up food if this is needed
opening packets, cartons etc. for them
keeping the table-setting relatively simple and uncluttered (e.g., only providing cutlery for one course at a time and only providing the cutlery the person can use, e.g., a person may prefer a spoon to a knife and fork)
putting cutlery or finger food into the person’s hands
providing direct assistance for the first mouthful, then encouragement (sometimes, direct assistance at the start may prompt someone to eat the rest of the meal independently)
using specialist equipment and accessories where needed, for example:
plate-guards, non-slip place mats, adaptive cutlery, weighted utensils (for increased awareness of the utensil in the hand), easy grip / foam handles (so that the cutlery is easier to hold / manipulate, one-way valve straws, age-appropriate non-spill cups, a cut-out or angled cup to reduce the need to tip the head back, a two-handled cup, a controlled-flow cup (providing a controlled amount of fluids),a brightly coloured cup if helpful for people with visual perceptual difficulties or a warming plate to ensure food remains warm and palatable if the person takes a long time to eat.

You can find out more information about specialist equipment below

Sometimes, people might eat in a way we might consider unconventional, or messy (for example, picking up food which is usually eaten with a fork). This might be a preferable and easier way for them, enabling them to be more independent. In situations like this, it is good to consider how to help the person maintain their dignity and their independence. Finger foods can also be helpful and so should be made available if appropriate.

If you need to give direct assistance

Some people living with dementia benefit from direct assistance at mealtimes. This means hands-on help to bring the food or drink to their mouth. It can feel uncomfortable to need help to eat and drink. There are various strategies that can help this to be a positive experience for the person. These include:

sitting in front of, or slightly to the side of, the person so they can see you
talking positively about what is on the plate (even if you feel the person may not be able to fully understand you) and using positive facial expressions to match what you are saying
focusing carefully on assisting the person
giving hand-over-hand assistance, i.e., supporting the person to hold the cutlery or cup and helping to guide it to their mouth
giving small amounts at a time
taking your time and checking that the person is ready for each mouthful (they may be able to indicate this, or you may need to check their mouth is empty before giving more)
giving regular prompts and encouragement
eating alongside the person can help the person to recognise it is a mealtime.

Responding to changing preferences

A person living with dementia may begin to develop some changes in the foods and drinks that they prefer and how they experience flavour. They may enjoy new flavours, or dislike foods and drinks they have previously enjoyed. It is important to be aware of the person’s mealtime preferences in terms of what, where, when and with whom they prefer to eat. If the person has difficulties with speech, language and communication, they may need some extra support to express their preferences.

Some people might develop strong preferences for certain foods and might request to eat the same or similar foods on a regular basis. Dietitians can give advice about having a nutrient rich diet. You can ask your GP for a referral to a dietitian. See British Dietetic Association (BDA) website.

Helping someone who is eating and drinking less

People living with dementia – particularly in more advanced stages – will often eat or drink less than they used to. However, sometimes there may be specific reasons why the person is eating and drinking less, which can be addressed. It is therefore important to consider what these reasons might be. They could include:

being unwell
depression, low mood or anxiety
constipation
needing to go to the toilet
difficulty recognising food, drink and utensils
difficulty expressing food preferences or understanding mealtime instructions
decreased co-ordination when handling cutlery or bringing food to the mouth
becoming distracted or feeling the need to walk around frequently
having a sore mouth (e.g., because of oral thrush or dental problems)
being given food or drink that they do not like
swallowing difficulties

The person may be unable to tell us why they are eating less, particularly if they have communication difficulties. Communication strategies might be needed to support them in this. Discussion with family and the wider care team may also be helpful.

Some people with dementia may eat more than they used to, put too much food in their mouth before swallowing or try to eat things that are not edible. This can be due to the person forgetting that they have already eaten or the message not getting to the brain from the stomach to realise that the person is full. Strategies that can help if someone is eating too much include:

supporting the person to cut up food into smaller pieces to avoid overfilling their mouth
providing smaller portions of food with the option to have an additional portion if required
providing prompts to swallow before the person puts more food in their mouth
providing lower calorie snacks if weight becomes an issue for the person.
if a person is regularly putting non-food items in their mouth, remove these items from the person’s reach and provide food options instead.

A person who is eating either too much or not enough may benefit from referral to a dietitian. For more information about the role of the dietitian, see the British Dietetic Association (BDA) website.

Trying different strategies

As well as investigating and addressing specific reasons like those listed, there are a range of general strategies that may be helpful to encourage someone to eat and drink. Different strategies may work for different people at different times. These include:

using activities that signal a meal is going to take place. e.g., laying the table together if possible, or having conversations about preparing foods
describing the meal positively – appearance, smell, taste etc.
reminiscing about the meal may be helpful, e.g., “I remember when we used to have this on holiday by the seaside…”
ensuring there is a relaxed environment
prompting with encouraging words and facial expressions
gentle use of touch – for example, touching food against the person’s lips
placing cutlery, cup or food into the person’s hands
trying different types and flavours of foods / finger foods and drinks
sitting with the person
chatting to the person
eating with the person
involving family members at mealtimes
having a break and trying again later
providing ‘little-and-often’ portion sizes and snacks
offering favourite foods and drinks.

If someone is drinking less than normal, this can impact them in various ways. For example, it might cause them to become more confused, it may make their urine darker in colour and strong smelling, it may increase the risk of falls, and it may mean that any medication is less effective. Here are some ideas to support someone who is drinking less:

Give the person enough time to drink without rushing them.
Sit down and have a drink with them.
If carers come in, they could offer drinks at the start and end of visits.
Offer a drink whenever someone visits because drinking is a social activity.
Offer a range of drinks that the person likes, including hot and cold drinks.
If a person is drinking less than they need, they may benefit from having foods with a higher fluid content, such as fruit or soup.

If you are concerned about whether someone is eating or drinking enough, contact your GP. They will be able to provide advice and support and may connect you to a dietitian, who can help with practical and personalised suggestions about optimising nutrition (for example, through food fortification or nourishing drinks) or hydration (for example, through providing foods with a high fluid content). Further information can be found on the British Dietetic Association (BDA) website.

Watching out for swallowing difficulties

Some people with dementia may experience swallowing difficulties. These can include:

forgetting to chew
eating quickly or cramming food into the mouth
oral sensory changes, e.g., spitting outs bits of food
over-chewing
holding food in the mouth
taking a long time to swallow.

There are various signs and symptoms which suggest a person is having swallowing difficulties, such as:

coughing or throat-clearing, during or after eating and / or drinking
a wet, ‘gurgling’ voice when eating or drinking
changes in breathing
changes in face colour
choking
food ‘sticking’ after swallowing
drooling
food or drink spilling from the mouth
food staying in the mouth after swallowing
taking a long time to finish the meal
declining / refusing food and drink
repeated chest infections
weight loss.

For more information on the NHS website about what to do if someone chokes.

If any of the above signs and symptoms occur regularly or increase, please speak to your GP about being referred to a speech and language therapist or other relevant healthcare professional. They will be able to assess the person’s swallowing and provide practical suggestions to help. In the meantime, it may be helpful to avoid any particular food that the person finds difficult to manage. There are also some general strategies in the next section which can be followed.

Eating, drinking and swallowing strategies

Here are some general strategies which may help a person to eat and drink:

Make sure the person is alert enough to eat and drink. If they become sleepy during the mealtime, stop and try again later.
Help the person to sit as upright as possible when eating and drinking. The optimum position for safe swallowing is sitting in an upright position with the head tilted slightly forward. Ideally the person should be sat in midline position (i.e., not leaning to one side), supported by cushions if necessary. Extra care may be needed when the person is finishing the last mouthfuls from a cup, to prevent the head tilting back.
Check the food or drink is not too hot or too cold.
Help the person to eat at the right pace, allowing enough time to chew and swallow each mouthful.
Provide prompts and support so that person does not try to swallow too much food or drink at once, for example reminding the person to swallow before taking another bite or sip.
Reduce distractions during mealtimes, e.g., turn off the TV or radio.
Where possible, use utensils and equipment that are familiar to the person.

If a person needs specific equipment to help them with eating and drinking, these can be recommended by either a speech and language therapist or an occupational therapist, who can assess what would be best for that person.

Oral Care

If a person’s mouth, gums and teeth are not clean and the person has swallowing problems, the bacteria from the mouth can enter the lungs and can cause a chest infection. Bacteria from the mouth can also enter the bloodstream through the gums, making conditions such as dementia worse. Reminding the person to clean their teeth or providing regular mouth care (to those who are unable to manage it independently) as well as regular dental check-ups, should be an essential part of the basic daily care. This includes people who do not have teeth or wear dentures. Poor oral hygiene can affect health, comfort and quality of life as well as eating and drinking.

General oral care advice

A toothbrush and toothpaste are the best tools for mouthcare. Low foaming toothpaste is helpful for people who can’t spit the out the residue.

To soften secretions, a soft, small headed toothbrush soaked in water, or a dry-mouth moisturising gel, can be used. Dentures need to be cleaned regularly (at least once a day) with a specially formulated denture cleaning paste rather than toothpaste.

If the person finds oral care uncomfortable or declines offers of oral care, consider a referral to special dentistry.

There is a wealth of information and some excellent resources on the following websites:

Eating and drinking at the end of life

When a person is at the end of their life, i.e., in the final weeks, days or hours, it is normal for them to eat and drink less than usual, or not at all. When someone is dying, the body slows down and needs less energy. Most people do not feel hunger or thirst and may be unable to process food and drink. This can be difficult and worrying for families or carers. Here are some resources with more information and support:

The role of speech and language therapists

Speech and language therapists assess difficulties with speech, language and communication as well as eating, drinking and swallowing. They can offer support to reduce the impact of these difficulties. A key role of speech and language therapists is the education of people who provide care and support for people with dementia. Speech and language therapists can also support people who have speech, language and communication difficulties to remain involved in decisions about their care. The RCSLT position paper on dementia highlights the SLT provision that should be available to meet the needs of people living with dementia, their family members and caregivers. It also highlights the key role that SLTs have within the multidisciplinary team.

Not all dementia diagnoses are the same, and not all people with dementia are the same. Speaking to a speech and language therapist as soon as possible can help you understand how the diagnosis is affecting you and things that might help you. Establishing good practices early on are essential to helping you maintain independence.

For communication support, we may advise on:

speech exercises
practising words and sentences
practising speaking with people in your home, community or work environment
social and mental stimulation
using other methods to support interaction, beyond speech (non-verbal communication / creative methods)
creating a life story
training and education for communication partners, on topics including
disease progression
strategies to address speech, language and communication difficulties
signposting to carer support.

For eating, drinking and swallowing support, we may advise on:

exercises to improve the strength and movement of the muscles needed for swallowing
adjusting posture when eating and drinking
techniques such as smaller mouthfuls or slower pace
education on mouth care
education on improving the mealtime experience
trying different types of food and drink
discussion around alternative means of eating and drinking.

Referral to an NHS speech and language therapist is often through the person’s GP, but some services take direct referrals. Search your local NHS trust’s website for information or speak to your GP. The Association of Speech & Language Therapists in Independent Practice have advice on their website on accessing speech & language therapy privately.

What to expect from your speech and language therapy appointment

A speech and language therapist will be able to provide assessment and advice for supporting difficulties with communication, or eating, drinking and swallowing. Sometimes the speech and language therapist will visit you at home for the appointment; sometimes appointments take place at a clinic. The speech and language therapy department will confirm this and will be able to help you to prepare for the appointment by explaining what the appointment is for, what is likely to happen, and approximately how long it will last. If you would like to bring your main conversation partner / carer to the appointment, this may be helpful. The speech and language therapist may speak to you together or separately, depending on your preferences.

During the appointment the speech and language therapist will help you to feel at ease by:

providing lots of opportunity to ask questions
explaining potential outcomes of the appointment and what will happen next
making time and space to involve family members and people who provide care and support.

If the appointment is about speech, language and communication, the speech and language therapist will assess any difficulties by doing some or all the following activities:

finding out background information about your life, interests and preferences
asking you, and / or family members and carers, to describe the communication difficulties that are happening
having a conversation with you, to get a better understanding of how you communicate
observing you having a conversation with family or carers, to understand how you communicate with people you know well.

In some circumstances, the speech and language therapist may do a more formal assessment of communication, if that is likely to be beneficial. This may involve asking some detailed questions or asking the person to complete some assessment tasks. In this case, they will take steps to carefully explain the purpose of the assessment and help the person to feel comfortable about it. The assessment might take place over several appointments.

If the appointment is about eating, drinking and swallowing, the speech and language therapist will assess any difficulties by doing some or all the following activities:

finding out background information about your life, interests and preferences
asking you, and / or family members and carers, to describe the eating, drinking and swallowing difficulties that are happening
assessing how well you can move the muscles used in eating, drinking and swallowing (e.g., tongue, lips etc.), and how well you are able to cough
observing you eating and drinking – they may provide some specific foods to do this, or they may come to visit you at a mealtime and observe you having a meal.

Whether the appointment is about speech, language and communication, or eating, drinking and swallowing, or all these things – at the end of the appointment the speech and language therapist will summarise the outcome of the appointment, explain what can happen next to help support the difficulties that have been identified, and answer any questions.

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