When people with dementia refuse help
When a person with dementia is unwilling to do something that we want them to do, this may be described as ‘refusal’ or ‘resistance’.
As with other areas of a person’s behaviour that we may find challenging or distressing, we need to try to find out what the person is telling us through their refusal – in other words, the reason why they are refusing. And rather than expecting the person with dementia to follow our wishes, we should be focusing on how we can co-operate with their wishes.
Being forced into things makes us upset or aggressive, even fearful.Christine Bryden
Why is this happening?
When a person with dementia is verbally or non-verbally communicating that they don’t want to do something, we need to discover why. It might be that:
- The person does not understand what they are being asked to do.
- The request we are making does not fit with the person’s standards and preferences – for example, we are asking them to eat something they don’t like or to go to bed when they want to stay up.
- The person feels they are being talked down to or bossed about, and is refusing in order to keep a sense of control.
- The person is misinterpreting the situation or environment, for example, the person may perceive a shiny floor as being wet and refuse to walk on it.
- The person doesn’t trust us.
Individual preferences and routines
Each one of us tends to live our life according to a set of routines. Some are imposed by necessity, but many reflect preferences and choices – when we go to bed, when we get up, whether we get dressed before we have breakfast or vice versa, and so on.
A person with dementia may refuse to fit in with a routine that does not match their own. This is a positive sign! It shows us that the person still has a sense of their own identity and autonomy. Care services need to be flexible enough to fit in with the individual’s routines. For example, if someone has always worked nights, it might be most natural for them to be up and about at night and this should not be seen as a problem. In this situation, the main challenge will be to find ways of engaging the person and providing company when there aren’t many other people around. In accepting a care service or moving into a care home a person hasn’t given up their right to live according to their own standards and routines.
Refusing help with personal care
Personal care is an intimate activity and most people will experience difficult feelings if they need help with this. Trying to force a person with dementia to accept personal care constitutes abuse. It is a fundamental human right to say ‘no’. However, neglecting someone’s personal care needs can also be abusive, as the person’s health may be put at risk. Therefore, it is essential to understand the person’s reason for refusing and to address this.
We may need to find an alternative way of providing the personal care the person needs, for example, offering a bath rather than a shower. It will be important to find out as much as possible about the person’s previous lifestyle and preferences concerning their hygiene. Perhaps the person always had a bath on Sunday mornings and had stand-up washes for the rest of the week. Then we need to adapt to this routine. Through finding out this background information, observing and listening to the person with dementia, we can gradually build up a picture of the personal care routines and preferences of each individual.
If a person with dementia refuses to eat, obviously we will be concerned for their physical well-being. There are a range of reasons why a person with dementia may refuse food, for example, they may have difficulties using cutlery, making decisions, or seeing and recognising food (see the Eating well and Eating and drinking at the end of life sections for more on this).
Refusing medication is a potentially serious issue that needs to be investigated. The person might be unwilling to take their medication because it causes unpleasant side effects that they have not been able to describe verbally. It could also be that the medication they have been prescribed is not appropriate for them and they feel better without it. For example, many people find the effects of antipsychotic medication to be very unpleasant. It should only be prescribed when it has clear benefits for the person.
People with dementia might also refuse to take medication they have been prescribed because they do not understand or have forgotten what it is for. It is important to give a clear explanation – using words and symbols if necessary that the person can understand – each time their medication is offered. A person might take a number of different tablets and only be prepared to swallow each tablet after they have been reminded what it is for.
If a person with dementia does not fully trust the staff member who is offering the medication, they are much less likely to accept it. Once again, then, this highlights the need to build trusting relationships with each person with dementia.
Getting our approach right
People may refuse help from some care staff but not others. This is likely to be to do with the quality of relationships and the type of approach. Refusing personal care from a particular staff member may be the person’s way of saying ‘I don’t know who you are’, ‘I don’t trust you’, ‘I’m embarrassed’ or ‘You’re going too fast’. All of these messages can be addressed – for example, we can:
- give clear explanations and repeat ourselves as necessary
- not ask for too much at one time
- work at building a closer relationship with the individual, showing that they are valued as a person and not just seen as a focus for a care task
- ensure that we are going at a pace with which the person feels comfortable and safe, not hurried or rushed
- ensure we are respecting their dignity and modesty as much as possible.
Refusing help is how some people communicate their need to believe that they are still independent. It is very important that we respect this and ensure that we help people to do everything that they can still do for themselves. It is often easier for a person to accept help with aspects of a task that they find difficult if they have a sense of achievement gained through completing some parts of the task on their own. For more on these ideas, look at the section on Communicating well.
If we feel that the person’s refusal is unacceptable, it is important to think about this fully. Is their refusal unacceptable because it goes against our own standards or routines? For example, the person refuses to go to bed at the time we feel they should go to bed? Do our expectations stand up to closer examination? We need to ask ourselves: what will happen if the person doesn’t do this thing that I want them to do right now?
- Will the person be harmed?
- Will others be at risk?
If not, it’s likely that our own expectations are unreasonable and, from the person’s refusal, we need to be willing to learn more about their needs and wishes.
If the person’s health or safety could genuinely be harmed through their refusal, it’s particularly important that we seek to understand the reasons and address the person’s underlying needs. Consider this example: a person with dementia refuses our help with their hygiene even though they have been doubly incontinent. In this situation it’s certainly reasonable to want the person to accept our help, but we have to understand their strong emotions and provide sensitive and empathic support before we can expect that our hygiene assistance will be accepted.
Senior managers of care services need to consider ways of making sure that routines are flexible enough to meet individuals’ needs. A care organisation must be run for the benefit of the people with dementia who are receiving care, rather than for the convenience of staff.
In residential settings, good teamwork is very important. If there is an expectation that certain tasks will always be completed by a certain time, inevitably this will mean over-riding the needs and preferences of individuals. The day’s timetable needs to be as flexible as possible, including mealtimes, with people being able to eat in their own rooms if they choose to and have snacks available at other times. In home care services, commissioners need to consider whether care staff have been allocated enough time to address individuals’ preferences at a pace that’s acceptable to them.
All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:
- Activity: Refusing help - thinking about our own preference and routines
- What the research says: Difficult situations
Further reading Open
Duffy, F (2019) CLEAR Dementia Care: a model to assess and address unmet needs, London: Jessica Kingsley.
James, I. & Jackman, L. (2017). Understanding behaviour in dementia that challenges: A guide to assessment and treatment (2nd edn). London: Jessica Kingsley.
’Behaviour that challenges’ in dementia. This 2018 British Psychological Society briefing paper highlights that a person’s unmet health or psychosocial need(s) can lead to behaviour that challenges.
Alzheimer’s Society. The Alzheimer’s Society has produced ’Reducing and managing behaviour that challenges’, and a blog ’How to offer help to someone with dementia who doesn’t want it’.
Dementia: assessment, management and support for people living with dementia and their carers. This 2018 guideline published by the National Institute for Health and Care Excellence (NICE) offers comprehensive best-practice advice on the care of people with dementia and on support for carers.
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