Many family members who care for a person with dementia believe that once the patient can no longer recognise even their closest relatives, communication between them is no longer possible. From the point of view of speech therapy, the picture is very different. Even in the moderate to severe stages, the patient's communication ability is not lost completely. A fair degree of remaining ability is often kept, whether in emotional exchange, language memory for familiar songs, response to visual cues, or non-verbal messages such as facial expression and body movement.
The focus of speech therapy for dementia is not to “restore language ability”. It is to find the remaining communication ability and build compensation routes. This includes bringing in AAC communication tools, adapting the environment, and, the most important but most often overlooked part, training carers in the right communication skills. This article goes through the features of cognitive-communication disorder, how communication changes at each stage, the four directions of intervention, and how a speech therapist builds an individual plan in the patient's real home setting through a home assessment.
What is cognitive-communication disorder?
Cognitive-communication disorder means difficulty in communicating that arises from damage to cognitive functions such as memory, attention, executive function or visuospatial ability. It does not come simply from damage to the language system itself, that is, speech sounds, grammar or vocabulary. This differs in a basic way from aphasia, and being clear about the difference is vital for deciding the direction of treatment.
- The language system itself is relatively intact, but the cognitive base it depends on is damaged
- Main difficulties: finding words (word-finding), remembering the thread of a conversation, keeping to a topic, organising speech
- Long-term memory (remote recall) is often kept longer than short-term memory
- Emotional communication (expression, tone of voice, body language) is usually kept until the late stages
- Responds better to familiar songs, childhood stories and ritual language (greetings)
- Communication difficulty appears gradually as the condition progresses, and the remaining abilities differ from person to person
- The language system itself (speech sounds, grammar, vocabulary) is directly damaged by brain injury
- Main difficulties: one or more of speaking, understanding, reading and writing
- Cognitive functions (memory, attention) are not necessarily affected
- Communication difficulty often appears suddenly after an event (a stroke)
- Potential for recovery depends on the site and extent of the damage and the timing of intervention
- Direction of treatment: repair or bypass the damaged language system
A person with dementia who cannot recall a word and a person with aphasia who cannot say a name look very similar on the surface, but the causes are different. In dementia, the problem is mostly that memory cannot be retrieved smoothly. In aphasia, the part of the brain that processes language is damaged. The two conditions need different assessment tools and different training methods, so they must be told apart accurately before treatment starts.
Communication features at each stage of dementia
The communication difficulty in dementia is not lost all at once. It changes step by step as the condition progresses. Knowing the features of each stage helps carers prepare early, and lets the speech therapist step in at the most effective time.
- 1Mild cognitive impairment (MCI) to mild dementiaThe patient sometimes cannot recall certain words when speaking, and repeats the same thing. If the conversation moves too fast, or several people speak at once, the patient finds it hard to keep up. At this stage, understanding, reading and writing are usually still fairly normal. Starting speech therapy now works best, because the therapist can help the patient build communication methods and make good use of memory aids.
- 2Moderate dementiaThe patient begins to find it hard to organise a conversation and carry on a topic. The sentences become shorter and often include words like “this... that...”. The patient also starts to have trouble understanding complex instructions, and the people around need to simplify their wording or add visual cues. The patient still responds to familiar people, places and daily routines, however, and can express emotions such as joy and anger. This stage is a good time to start low-tech AAC tools such as communication boards and photos.
- 3Severe dementiaSpoken expression declines greatly, and the patient may say only single words or phrases, or make sounds that carry emotion. Non-verbal communication such as facial expression, a handshake and eye contact is usually still meaningful, though. The patient often responds well to familiar music or nursery songs from childhood. At this stage speech therapy focuses on teaching carers to understand these non-verbal signals and to build ways of interacting that keep the patient comfortable. Patients in the late stages often have eating problems, so the therapist also assesses their swallowing safety.
Four directions of intervention in speech therapy
Speech therapy for dementia is not a single set of “communication exercises”. It is a combined plan that covers four levels: assessment, environment, tools and carers.
AAC systems: low-tech and high-tech tools
AAC (augmentative and alternative communication) is one of the core tools of speech therapy for dementia. In choosing a suitable AAC system, the patient's cognitive level, vision and physical ability, and the carer's ability to support its use, must all be considered.
- Communication board: a card or hard board printed with common words, pictures or symbols, which the patient points to in order to express needs
- Photo communication album: photos of family, familiar places and everyday objects, which trigger long-term memory and conversation
- Memory book: a record of important events, people and routines in time order, which helps the patient with orientation and organising conversation
- Large-print schedules and labels: put in prominent places at home to give orientation and daily prompts
- Advantages: intuitive to use, no charging needed, low cognitive load, easy for carers to maintain
- Most suitable for: patients with moderate to severe dementia
- Speech-output apps (such as Proloquo2Go and LetMeTalk): a picture-based communication interface on a tablet, where touching a symbol produces speech
- Speech-generating devices (SGD): dedicated speech-synthesis communicators
- Personalised voice recording devices: family voices recorded beforehand, with a button to play a particular message
- Smart home integration: voice-controlled lighting, television and so on, to keep independence in daily life
- Advantages: speech output can make up for declining language, a large vocabulary can be stored, and some support personalised settings
- Most suitable for: patients with mild to moderate dementia who can still operate a touch interface
Research has found that the voice output function may add to the burden on patients with moderate dementia and make conversation less smooth (Fried-Oken 2009). Speech therapists therefore usually try low-tech AAC tools first, and consider a high-tech system only after the patient has shown they can use them. The principle in choosing tools is that they are practical and helpful, and the aim is not to chase complicated technology.
Carer communication training: the intervention most often overlooked
Family members are often the people who spend the most time with a person with dementia every day, yet they seldom get systematic training in communication skills. Research indicates that giving carers targeted communication training significantly improves the quality of the patient's communication and their mood (Eggenberger 2013; Olthof-Nefkens 2018).
- Simplify language—Give only one instruction at a time, use short sentences, and add visual cues such as gestures, real objects or pictures to help the patient understand.
- Go along with the conversation and do not correct mistaken memories—If the patient mistakes who someone is or gets the time wrong, insisting on a correction only makes them more confused and agitated. The carer can respond along with what the person says and then change the topic naturally, or bring the conversation back on track without directly denying what was said.
- Make good use of long-term memory—People with dementia usually keep long-term memories of childhood, weddings and past work longer than recent memories. Carers can use old photos, music or familiar smells to call up these memories and start a conversation with the patient.
- Slow down and allow enough waiting time—The patient is slower to find words. After speaking, the carer is advised to wait calmly for 10–15 seconds to give the patient time to organise a reply, and not to rush in and speak for them.
- Value non-verbal communication—More than the content of what is said, patients usually notice facial expression, a gentle pat, eye contact and changes in tone of voice. For patients with severe dementia these non-verbal methods are often the only effective way to communicate.
How a home assessment works
The communication difficulties of a person with dementia often show most clearly in the familiar home setting. In a home speech therapy assessment, the therapist can see for themselves how the patient looks for things at home and interacts with family, and can find potential barriers to communication in the room (such as noise, poor lighting and a lack of prompts), so that the plan fits daily life.
- 1Medical history and carer interviewThe therapist first finds out what type of dementia the patient has (for example Alzheimer's disease, vascular dementia or Lewy body dementia) and what communication difficulties there are now. The therapist also learns about the carer's usual communication habits and difficulties, and asks about the patient's language background, including mother tongue, familiar songs, past work and personal interests.
- 2Cognitive-communication assessmentThe therapist assesses the patient's language understanding, expression, word-finding, organisation of conversation and reading comprehension, and checks whether the patient's cognitive and hand function is enough to use AAC tools. If the patient has difficulty eating or chokes easily, the therapist also assesses swallowing safety at the same time.
- 3Observing the environment and recommending changesThe therapist looks at whether the home is easy to communicate in, including lighting, noise, where prompts are placed, and how the carer usually speaks to the patient. The therapist then gives specific suggestions for improvement, to help the family communicate with the patient more smoothly in daily life.
- 4Choosing AAC tools and trainingThe therapist chooses suitable AAC tools according to the patient's abilities and teaches the patient and carer on the spot how to use them. This way the family still knows how to carry on using them after the therapist leaves.
- 5Carer communication skills trainingDuring real time together, the therapist demonstrates and practises with the family how to simplify speech, leave time for the patient to respond, watch for non-verbal messages, and start conversation from familiar events in the past.
Swallowing safety in the late stages of dementia
In the late stages of dementia, patients often have difficulty eating, such as forgetting how to chew, being unable to concentrate when eating, or even being unable to start the swallowing reflex normally. This differs from ordinary swallowing difficulty, and it often needs intervention from both the cognitive side and the swallowing side.
Common eating difficulties in people with dementia
- Forgetting how to chew or swallow (loss of procedural memory)
- Getting distracted easily at meals, and holding food in the mouth for a long time without swallowing
- Showing no interest in food, or forgetting how to use chopsticks, spoons and other utensils
- Not understanding spoken instructions, and not responding even when people around keep reminding the patient to swallow
- A slower swallowing reflex, which raises the risk of food silently entering the windpipe (silent aspiration)
Ways to help people with dementia eat
- Use the temperature, colour and smell of food to remind the patient that eating is happening
- Keep the environment quiet, and let the patient sit in a fixed place and use familiar utensils to help concentrate on eating
- Show the patient the chewing and swallowing movement directly, instead of relying on spoken instructions
- Assess which food texture suits the patient by the IDDSI standard, and avoid making food too thick
- Swallowing ability changes as cognition declines, so a speech therapist needs to reassess swallowing safety regularly
If the patient at home also has difficulty swallowing, see the detailed information on speech therapy for swallowing difficulty and on assessment for removing a nasogastric tube.
Checklist for carers on communication
- Before speaking, make sure the patient is looking at you and keep eye contact
- Give one instruction or ask one question at a time, and do not give several choices at once
- After speaking, wait patiently for 10–15 seconds to give the patient enough time to respond
- Add visual cues such as gestures, photos or real objects to help the patient understand
- When the patient remembers something wrongly, do not correct it directly, and change the topic instead
- Play familiar music or bring out old photos to call up the patient's long-term memories and start conversation
- With a severely affected patient, watch their facial expressions and body movements closely and work out what they mean from those
- If the patient chokes at meals, or often holds food in the mouth without swallowing, ask a speech therapist for an assessment as soon as possible
Frequently asked questions
The communication difficulty of dementia is often written off as hopeless, but speech therapy can find the remaining abilities, build compensation strategies and train carers. Our speech therapists provide home assessments and build an individual plan in the patient's real home setting.
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