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Caring for someone with dementia

The one principle that runs throughout caring for someone with dementia is remembering that they are still the same person, only with a disease. This is important and will help them, as you try to make sure that you and others always treat them as an individual and with respect. It may also help you be more understanding, particularly in times of frustration.

 

By remembering that dementia isn't their fault, you may find it easier to be sympathetic and patient, even when you are frustrated, tired or stressed.

The person isn't deliberately being 'difficult', 'lazy', 'demanding', or even 'just getting old'. They are going through difficult, frustrating changes as their world becomes more and more confusing.

 

Communication

In the early stages of dementia the person may struggle to find the right words, especially to describe objects. As their dementia progresses they may forget your name and the name of others close to them, and may also confuse generations of their family, such as thinking their wife is their mother. This can be distressing for carers, close family and friends.

The resulting memory loss of dementia can cause frustration for carers when it creates repetition or failure to understand answers. The vital thing to remember is that the person is not trying to be annoying. They genuinely forget that they have asked the question and you have answered it before. If you do lose patience or snap, they will not understand why and may be hurt or even frightened by your reaction.

Here are some ideas that might help:

  • take time to answer questions slowly and clearly, with eye contact
  • reduce distractions, such as the television or radio
  • dementia makes it harder to process information, so give the person time to understand
  • answer the question and then encourage them to start an activity that you know they enjoy, to try to engage them with something else
  • if they are asking for something, consider whether it is practical to get it or do it and whether other things wait
  • gently question further to see if there is a reason for the question, for example, if asking whether another relative is coming to visit today, it might be because they think they need to prepare a meal for them - you can reassure them that there's no need for a meal
  • if what they're saying starts to become incoherent, repeat the first few words they said and they may be able to pick up the thread again, or if you phrase the words as a question you might get an answer in reply

In general, try to provide answers that are reassuring and calming at that moment, although it can be hard to control your frustration. Confrontation or argument may frighten and upset the person you are caring for.

Coping with behaviour we find difficult

Dementia can lead to a loss of self-control and can cause the inhibitions and learnt rules of acceptable behaviour to be lost. Aggressive or difficult behaviour can be distressing to the person with dementia and to you. It may include hurtful comments, verbal aggression and threats, kicking, pinching or lashing out at people or objects.

It's helpful to try to work out what causes the behaviour, as it's unlikely to be the disease that's causing the person to be difficult. Think about whether the following may apply:

  • frustration - wanting to go somewhere or do something and being unable to do so or told they can't
  • annoyance - not being able to make themselves understood
  • intrusion - lack of privacy such as going to the toilet or bathing
  • startled - by a sudden or unexpected approach
  • are they in any pain or discomfort?
  • fear - not knowing who you are or because you touched them when they weren't expecting it
  • confusion - not knowing where they are, thinking you may have taken something of theirs

Some do's and don'ts that might help:

  • do think about what they might be experiencing, feeling or thinking
  • do ask questions to help you understand the circumstances in which the outburst occurred
  • do try different approaches in future
  • do give them plenty of space if it is safe to do so
  • don't dwell on negative feelings about it
  • don't take it personally
  • don't react, be loud or aggressive in return
  • don't punish the person by ignoring them or not allowing treats

Remember, people with dementia rarely remember what they've done. They may be equally upset by what's going on or by having lost control. Try to provide lots of reassurance by talking to them, holding their hand or giving them a cuddle, if you think it's appropriate.

If you are worried by a person with dementia's behaviour, ask for a referral to a specialist, such as a psychiatrist or psychologist specialising in older people who will be able to give you advice.

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