When people with dementia become withdrawn
When a person with dementia doesn’t seem to be aware of other people or is quite unresponsive, we may describe them as being ‘withdrawn’. It can be difficult to know what to do in these situations. If someone seems to be spending much of their time disconnected from social interaction and activity, it is important to explore why this is happening and investigate any possible unmet needs. It may be that the person is tired or it may be because they are feeling bored or cut off from others. This feature explores some of the reasons why a person with dementia may appear withdrawn and what we can do to help.
My hiding place now is one that I can stretch out to and run away to for a while.Extract from ‘From my hiding place’, a poem by a person with dementia published in You are words (Killick, 1997)
Lack of engagement and being withdrawn
As dementia progresses, it becomes more likely that a person will become withdrawn, but this doesn’t mean that this withdrawal is caused directly by the dementia. A person with dementia is much more likely to become withdrawn because they feel isolated or bored.
Many people with dementia spend much of their time alone or, even if they are with others, there may not be much conversation between them. A person with dementia may find it difficult to initiate a conversation or an activity themselves. When no one else does anything to engage their attention the person has no choice but to retreat into their own thoughts.
The person may spend much of their time asleep too. After being withdrawn for a period of time, people tend to find it hard to come back into contact with others. They may seem disinterested if somebody does then try to engage with them or offer them something to do.
Difficult feelings may lead a person to withdraw
Withdrawing from other people can be a way of dealing with difficult emotions such as anger, sadness or fear. These sorts of feelings can be triggered by negative experiences, such as being undermined or patronised. If we identify and then avoid the triggers to a person’s difficult feelings, the person may well become more engaged with others around them.
Withdrawal may be a sign that someone is depressed. Depression affects many people with dementia. Often it can be tackled successfully through counselling support, medication or a combination of the two.
Physical reasons to consider
If a person becomes withdrawn, it is important to consider whether this could be caused by physical changes. A person may withdraw because they are simply feeling unwell, in which case they need medical attention.
Medication may also cause a person to withdraw. Antipsychotics, in particular, have a profound effect on quality of life, leaving people with dementia heavily sedated and causing some serious side effects (for more on this, see the feature on Antipsychotic medication and dementia). If a person with dementia is taking antipsychotic medication, a doctor should review whether this is the best course of action as soon as possible. A 2009 Department of Health report estimated that 150,000 people with dementia in the UK are being prescribed antipsychotic drugs inappropriately and these are contributing to 1,800 deaths a year.
Withdrawing because of a loss of abilities
A person with dementia may become withdrawn because of a loss of abilities caused by dementia. For example, if verbal communication becomes too much of a struggle, a person may give up on trying to communicate. Or if an individual is aware that they cannot remember people’s names or details of recent conversations they have had, it might feel easier to withdraw from further contact. Sensitive support from others will help to address these problems – for example, the use of helpful communication techniques, the provision of tactful and timely reminders of forgotten information, and lots of patience and reassurance.
When a person with dementia is aware of their loss of abilities, they may develop poor self-esteem and lose confidence, which in turn could lead them to withdraw from others. The most helpful thing that care staff or family carers can do is to focus on helping the person use their strengths and abilities and start to feel better about themselves.
People with dementia may also appear to be withdrawn because damage to the frontal lobe of the brain can cause a loss of initiative. If this is the case, the person might find it hard to ‘get going’, but will often respond to gentle prompts and encouragement if someone else takes the lead.
Engaging people with advanced dementia
In advanced dementia, a person may have lost many of the abilities necessary to engage with others, but this doesn’t necessarily mean that the person is actually withdrawn. With close observation we may see, for example, that the person’s eyes follow us as we move towards them. When we squeeze the person’s hand, we might feel that they are squeezing ours back. When we talk to the person, we might see by their facial expression that they understand a lot of what we are saying, even though they do not respond verbally.
Even when someone appears very withdrawn, it is important to assume that they may be aware of everything that is happening and being said in their presence. Therefore we should never say anything in front of a person with dementia that would make them feel upset or undermined if they are able to understand. And even if a person is not responding, we must always be gentle and sensitive, clearly explaining any personal care we are giving and never ever treating a person like an object.
Being quiet or quietly being forgotten?
Most of us need some quiet time every so often. Some people are naturally quieter than others too and prefer to watch and listen rather than joining in.
While we need to respect people’s preferences, it is important to make sure that no one ends up being left out or forgotten. When someone is quiet, it doesn’t necessarily mean that they are withdrawn, but we need to be observant of their mood and ensure there are opportunities for them to be more engaged if and when they would like to be.
We need to be careful not to assume that just because someone is being quiet and undemanding, then they’re OK. It can be easy to overlook the fact that the person has, in fact, become withdrawn. This is most likely to happen in a group care setting where other clients are being more assertive in making their needs known. A person who is withdrawn probably has unmet needs, and when no attempts are made to investigate the reasons for their withdrawal, it is likely that the state will persist and the person may become less and less engaged with the world around them.
How to reach out to someone who is withdrawn
When a person is withdrawn, it is important not to assume that this is inevitable or permanent. One of the most important things we can do when caring for people with dementia is to find ways of making contact with each individual (for more ideas on this see the section on Keeping active and occupied). Often we need to be prepared just to sit quietly with someone, letting them know we are there but not putting any pressure on them to interact if they are not ready to do so.
Using gentle touch, if appropriate for the individual, can be a good way of making a connection.
Knowing the person well is particularly helpful when we are trying to make contact – for example, we can play their favourite piece of music or talk about things that are relevant to them.
Having contact with animals can also be important for some people with dementia. Stroking a cat, for example, can help to keep a person in touch with the world around them.
Even if a person only engages with others from time to time, these moments can be very significant and help the person feel that they are not alone.
For more on these ideas, look at the section on Communicating well.
Access and download additional resources
Further reading Open
Alzheimer’s Society (2007) Home from home: Quality of care for people with dementia living in care homes, London: Alzheimer’s Society.
Commission for Social Care Inspection (2008) See me, not just the dementia, London: Commission for Social Care Inspection.
Department of Health (2009) The use of antipsychotic medication for people with dementia: Time for action: An independent report by Professor Sube Banerjee, London: Department of Health.
Killick, J. (1997) You are words, London: Hawker.
‘There is a bridge’ DVD: dementia expert Naomi Feil talks with Gladys Wilson, a woman with advanced dementia, and shows that even people who seem to be very withdrawn can still be reached. An extract from the DVD is available to view on YouTube.
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