When people with dementia experience a different reality
Sometimes people with dementia say things that suggest they have a different idea of ‘reality’ – or sense of what is really going on – from our own. A person might, for example, ask to see his wife (who is no longer alive) or tell us that he sees insects in his bedroom (that aren’t there).
When we build up this awareness of an individual’s ways of communicating, it helps us to find an effective response and also address the person’s needs.
This is partly because the person’s memory and ways of seeing things have been altered by dementia. Memory about current or recent events tends to become damaged, while memory about the past remains relatively intact – so the past can seem more real than the present to the person with dementia. A person might see things that aren’t there because they are experiencing a hallucination or are having difficulties making sense of what their eyes are seeing.
Why is this happening?
Some reasons why a person with dementia may have a ‘different reality’:
- Asking for a close relative who has died can indicate, for example, a need for closeness, acceptance, affection, or something specific that the relative used to do (for example, a favourite meal that the relative used to cook).
- A person’s belief that they still work or have young children can indicate, for example, a need for being involved in an activity that has value or purpose, or the need to feel needed.
- A person who sees or hears something that isn’t there may be experiencing a hallucination, which could be a symptom of their dementia or might indicate an infection or side effects from medication. Alternatively, the person might be confused by something that they can see or hear. For example, flowery wallpaper could be mistaken for insects on the wall, or a person coughing in the next room could be mistaken for a dog barking.
Truth and lies
It is important to recognise that the person’s beliefs about reality are usually just as real to them as our reality is to us. So it is often unhelpful to confront a person with the truth when they believe something different. Insisting on the truth can cause unnecessary distress – for example, if we remind a person that his wife, who he has been asking to see, is dead.
But problems can also be caused by lying. For example, if we raise the person’s expectations that his wife will be coming home soon, he will feel even more upset when she doesn’t arrive. Instead, it’s often better to respond sensitively to the person’s feelings.
Tuning into feelings
In fact, the person’s beliefs about what is real can give us some very important clues about their feelings and needs, and the kind of response that could help. So, if we avoid truth and lies and focus instead on feelings and needs, we can try to find out the reason why the person spoke about their different reality in the first place. For example, the person asking for his wife might be doing this because he feels lonely – in which case we can try to provide company and friendship. Or he might be feeling unwell and his wife used to look after him at such times.
When a person sees something that isn’t there, again we need to be aware that their feelings about this are real and important. If someone is frightened because he believes his bed is crawling with insects, he is likely to need us to be understanding and take his concerns seriously. Since we can’t see the insects, we’ll also need to find out from him where they are, and through this we may find out that he has a practical need. Perhaps he is experiencing a hallucination brought on by an infection and needs to see the doctor. Or maybe the pattern on his duvet cover is confusing to him and we need to change the bedding.
Responding to individuals
The better we know a person, the more we can build up knowledge of what they might need when they say a certain comment or question. We may know that when Doris talks about needing to collect her children from school, it’s usually because she’s feeling bored. If Arthur talks about his wife, it’s often because he’s missing her and would like to talk about her. And when Olga asks for her mother it’s most likely to mean that someone has upset her and she needs support.
When we build up this awareness of an individual’s ways of communicating, it not only helps us to find an effective response to a tricky question, it means we can also put plans in place to address the person’s needs.
For more on these ideas, look at the section on ‘Communicating well’.
All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:
- QCF Mapping: A different reality
- Activity: A different reality
- What the research says: Difficult situations
Further reading Open
Alzheimer’s Society (2016) ‘Sight, perceptions and hallucinations in dementia’, Factsheet 527, London: Alzheimer’s Society.
Bryden, C. (2005) Dancing with dementia, London: Jessica Kingsley Publishers.
Cheston, R. and Bender, M. (1999) ‘Therapeutic interventions’ in Understanding dementia, the man with the worried eyes, London: Jessica Kingsley Publishers.
‘Darkness in the afternoon’: a 2006 film and training booklet developed by the Dementia Services Development Centre, University of Stirling, intended to help staff and family carers explore some of the issues that can arise when a person with dementia has a different sense of reality. The DVD and training booklet are available to purchase from the Dementia Services Development Centre, University of Stirling.
‘Ex memoria’: this 2006 award-winning fiction film tells the story of Eva, a woman with dementia living in a care home, who has a changing sense of reality. The film, which can be used for training purposes, was made in collaboration with the Bradford Dementia Group and is available to purchase as a DVD from ‘Missing in Action Films’.
Stokes, G. (2002) ‘Confusion’, in G. Stokes and F. Goudie (eds) The essential dementia care handbook, Milton Keynes: Speechmark. Walker, B. (2007) ‘Communication: building up a toolkit of helpful responses’, Journal of Dementia Care, vol 15, no 1, pp 28–33.
Walker, B. (2007) ‘Communication: building up a toolkit of helpful responses’, Journal of Dementia Care, vol 15, no 1, pp 28–33.
Useful links Open
Alternatives to antipsychotic medication: psychological approaches in managing psychological and behavioural distress in people with dementia
This 2013 British Psychological Society briefing paper sets out guidance for practitioners on how to respond to distress in people with dementia by following a ‘staged approach’: a series of steps involving identifying, understanding and implementing individualised interventions.
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including many that relate to difficult situations in supporting a person living with dementia: Dementia and aggressive behaviour (509), Sight, perceptions and hallucinations in dementia (520), Managing toilet problems and incontinence (502), Walking about (501), and Sex and intimate relationships (514).
Dementia: Supporting people with dementia and their carers in health and social care
This 2006 guideline jointly published by the National Institute for Health and Clinical Excellence (NICE) and the Social Care Institute for Excellence (SCIE) offers comprehensive best-practice advice on the care of people with dementia and on support for carers.
Positive and proactive care: reducing the need for restrictive interventions
The Department of Health’s 2014 guidance on restraint is aimed at all health and social care staff working with adults in England.
Related pages from this section Open