Behaviour in dementia as a form of communication
Behaviour is communication. Whether it's good, bad or indifferent, it is a clear expression of our feelings and needs.
People with dementia frequently lose the ability to speak as the disease progresses. However, they continue to communicate in other ways – through body language, gestures and facial expressions.
When speech is difficult and the dementia is clouding how the person thinks – exhibiting a behaviour is a way of being heard.Alzheimer Scotland
Some behaviour is a direct result of the type of dementia a person has (for example, someone with fronto-temporal dementia can become extrovert, aggressive in speech and behaviour and lose some of their natural inhibitions). However, most behaviour that is or may appear to be challenging happens when a person with dementia has a need that is not being met or is trying, probably unsuccessfully, to express their feelings.
In this feature, we will look at how behaviour is used as communication and how to understand it. For more on these sorts of ideas, look in the section Behavioural challenges.
How we communicate
We communicate mainly through facial expressions, body language, gestures and touch. In fact, 55 per cent of our communication is non-verbal. The remaining 45 per cent is made up of the words we use and the tone and pitch of our voice.
These figures are based on a communications model developed by Professor Albert Mehrabian whose work helped to establish early understanding of body language and non-verbal communication. Find out more about Professor Mehrabian's communication research.
Non-verbal communication provides clues about how someone is feeling and what they are trying to communicate. Think about how you appear to a person with dementia if you are angry, happy, sad or frustrated. Think about your posture. What do you do with your hands? How do you stand? What is your face expressing? What gestures do you use?
Behaviour associated with dementia
There are many forms of behaviour that can be challenging when caring for a person with dementia, particularly as the illness progresses. They may repeat things, push you away, or become irritable, agitated or aggressive while you are trying to provide care or support. You may feel uncomfortable if their mood changes and they start shouting or swearing at you or appear to have no interest in themselves or their care. They may pace around or walk away. Some people with dementia experience hallucinations.
A change in roles or relationships can lead to a sudden change in behaviour (for example, a wife who has cared for her husband and children all her life may find a role reversal difficult to accept). A triggered memory, perhaps from childhood, can affect a person's behaviour. A person's surroundings can also have an impact (for example, if a person with dementia does not recognise their reflection in a mirror they may become anxious that another person is in the room).
No two people experience dementia in the same way. A person’s behaviour will be influenced by so many things: the type of dementia the person has, their personality, their health, and the support and environment around them.
See the Behavioural challenges section for further information on difficult behaviours.
Some difficult behaviours associated with dementia
As dementia progresses, the following behaviours become more common among people with dementia:
- repeating actions, words or gestures: this can involve asking the same question again and again, repeating a task, such as packing and unpacking a bag, and making multiple phone calls to family and friends
- being restless: perhaps pacing up and down in a room or a corridor or fidgeting, showing signs of anxiety
- shouting, or repeatedly calling out for someone or something, perhaps a person, place or object from the past
- showing a lack of inhibition that could involve addressing people inappropriately, indecent exposure, undressing in public places and improper sexual behaviour
- walking around during the day or night
- constantly following a loved one, carer, or care worker
- becoming increasingly suspicious, suspecting people are plotting against them, trying to catch them out or are hiding things from them
- becoming confused or disorientated at the end of the day – a condition sometimes called sundowning
- being anxious and agitated, frequently a direct result of the profound nature of and changes brought about by dementia.
Understanding the behaviour
Understanding what behaviour means is often achieved through a process of elimination. The more you know about the person with dementia, the more likely you are to understand what they may be trying to communicate to you.
Look for the person behind the dementia – to think about what they have done in their lives, and their personal likes, dislikes, important relationships, culture and beliefs. This may well give you a clue to their behaviour. For example, if someone has been a teacher they may prefer to stand up and walk around as they did in class and become more animated at school opening and closure times. A former gardener or farmer may well be looking to go outside in all weathers. Graham Stokes tells some extraordinary stories about people with dementia in his book, 'And still the music plays' and, in most of these, learning about a person’s past proves the key in better meeting their needs.
Our own perceptions and attitudes can also affect how we interpret and respond to behaviour. We may find that behaviour challenges our social beliefs or values – for example, someone may not want to be cared for by a person of a different culture or background.
Recognising patterns in behaviour
To make sense of particular behaviour and what the person with dementia is trying to communicate, try to put yourself in their shoes. Imagine how you would feel and behave if you felt you were losing your memory, struggling to think or talk, and were unable to recognise family and friends or to find your way around your own home.
Behaviour can often follow a pattern – and recognising that pattern can be helpful to carers and care workers. When behaviour changes it is helpful to look at what might have triggered the change. Was it something you said or did or was there a change in the environment (for example, a TV being switched on, sunlight coming through a window or a sudden sound, such as a door banging or telephone ringing) that may have startled the person or triggered a memory?
Study the behaviour, how it developed and how it calmed down or was resolved. Did you help to ease it? If so, how? Was anyone else involved? Writing down the events and creating a diary will help other carers and care staff to recognise and respond to the behaviour.
How to help
Develop a routine. Most people with dementia respond well to familiarity and to having a structured day. It can help them to manage memory and communication problems and feel more in control of their lives. It can also help to reduce agitation and anxiety.
Try to accommodate a person’s behaviour rather than trying to control it. Do not take difficult behaviour personally, for it is unlikely to be directly targeted at you.
Retain a sense of humour in difficult situations and be patient, creative, flexible and compassionate when trying to interpret what someone is trying to say and do.
Think about how the person’s home environment may be affecting their behaviour: for example, can they easily find rooms or a favourite chair and do they know how to switch on their TV? (see the section on ‘Dementia-friendly environments’).
If the person is repeating the same question or phrase, try to help by offering an answer to break the cycle. It helps to provide clues. The person may not understand what is said but may connect with something they are shown: for example, if you are asked what time it is, you could say 11.00 in the morning and show the time on a watch or clock.
When an action is repeated, such as packing a bag or folding sheets, it may be linked to a previous job or hobby. Try turning this into an activity – for example, someone who worked as a housekeeper could be encouraged to help with laundry or cleaning work. If someone keeps doing the same thing out of boredom, encourage them to become involved in activities around the house.
If a person is restless, consider their body language, facial expressions, gestures and general demeanour. If they are pacing around they may want to go for a walk. If they are fidgeting, particularly with trousers or a skirt, they may want to use the toilet. Appearing to protect or cover a mouth, ear or other part of their body, may suggest they are in pain. Sometimes, restlessness can be a sign of tiredness. Do your best to check the cause and seek help if required.
If someone is affected by sundowning, try to ensure there is enough light to help them make sense of their surroundings, particularly in the winter months. More physically and mentally demanding activities can be carried out earlier in the day to avoid confusion and disorientation. Simple, relaxing activities at the end of the day can help to ease anxiety.
Other factors that can change behaviour
Poor hearing and vision and arthritic and dental pain can also have a major impact on a person’s behaviour and ability to communicate.
Vision in older people can be affected by cataracts, glaucoma, retinal disorder and macular degeneration. If a person has difficulty making sense of their surroundings or is having difficulty reading, watching TV or has become withdrawn, it may be because their vision is impaired. Check if they wear glasses and use them and that their eyes have been tested.
If someone has difficulty in understanding or engaging in conversation or activities it may be because their hearing is impaired. Check if they use a hearing aid, make sure it is working and arrange a hearing test.
Arthritic pain is common in many older people yet it is often overlooked when someone has dementia. Someone suffering from arthritis may well rub a certain area and shield it from being touched. A GP may be able to prescribe medication to ease the pain.
Mouth ulcers, loose fillings, broken teeth, infections and poorly fitted dentures can affect a person’s speech and appetite. Good oral hygiene – including regularly cleaning teeth and gums and having dentures checked – is critical in maintaining good health and wellbeing.
Access and download additional resources
Further reading Open
Alzheimer Scotland (2005) Letting go without giving up: Continuing to care for the person with dementia, Edinburgh: Alzheimer Scotland.
Alzheimer’s Society (2010) ‘Unusual behaviour’, Factsheet 525, London: Alzheimer’s Society.
Alzheimer’s Society (2010) ‘Dealing with aggressive behaviour’, Factsheet 509, London: Alzheimer’s Society.
Alzheimer’s Society, ‘Advice for nurses and other healthcare professionals’, online information.
NHS Choices (2012) ‘Coping with dementia behaviour changes’, online information.
Roberts, J. (2012) 'Dementia care: How to deal with the challenges of communication', Sutton: UKHCA.
Useful links Open
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including many that relate to communicating well with people with dementia: ‘Communicating’ (500) ‘Understanding and supporting a person with dementia’ (524),‘Dementia and the brain’ (456), ‘Changes in behaviour’ (525) and ‘Top tips’.
Communicating with people with dementia
This short video posted on Youtube features Bupa’s dementia specialist, Dr Graham Stokes, talking about communication with people with dementia.
Dementia care: how to deal with the challenges of communication
This 2012 publication was written by Jennifer Roberts, previously the Dementia Lead for the UKHCA.
DemTalk is a free online toolkit giving guidance on communication with people living with dementia. Different versions of the toolkit have been developed for family carers and health and care staff.
Listen, talk, connect: communicating with people living with dementia
This 2014 Care UK guide is aimed at family carers, relatives and friends and covers topics such as ‘Starting a conversation’, ‘Having a conversation’, ‘Making the most of your visit’, ‘The unspoken word’, and ‘Coping with difficult conversations’. The guide includes top tips and practical suggestions from a range of Care UK staff.
Tips for better communication with a person living with dementia
This new factsheet from Dementia UK explains the challenges faced by people with dementia when communicating, sets out helpful suggestions on good communication skills, and describes some common communication dilemmas.
Related pages from this section Open