Advice

When the motivation is gone: supporting a person with dementia who has apathy

Apathy is common in most types of dementia but many people don’t recognise it as part of the condition. This makes it harder to help the person get back to being active and engaged with others.

Clare Burgon has carried out research at the University of Nottingham exploring how apathy affects people living with dementia or mild cognitive impairment. She has interviewed many families affected by dementia and has some tips for those who are struggling with apathy.

Signs that a person with dementia has apathy

Apathy varies from person to person, but it’s common for people to be: 

• more withdrawn and less sociable than they used to be
• less likely to start a conversation
• less curious or enthusiastic
• less likely to say what they want, or come up with ideas about what to do
• less emotionally expressive – never seeming to be particularly happy or sad

It’s very common for someone with apathy to spend most of the day sat in an armchair watching TV, not engaged with people or things around them. This can be frustrating for those who live with them, leading sometimes to accusations that they are being ‘lazy’.

Coping with apathy as a carer

It can be difficult to see someone you care about withdraw like this – and hard not to take it personally. But it’s no one’s fault and it’s probably not intentional. 

It can also feel as if you’re losing the person. However, this isn’t necessarily the case. Apathy can often improve with the right understanding and support.

[carer referring to person with dementia] I’ve found her less- what’s the word … less emotionally engaged with the grandchildren now... I think there’s a subtle difference there. She still loves them but I don’t think it’s quite as … what’s the word? Umm … yeah not quite so engaged with them.

Why might a person with dementia lose interest or stop caring?

One explanation for apathy in dementia is that certain parts of the brain involved in processing thoughts and emotions are damaged by disease. 

When this happens, it can change a person’s behaviour. It’s a difficult situation as their brain no longer has the ability to feel as motivated as it used to. As a result, the person struggles to start new tasks or have normal emotional responses.”

However, for many people apathy seems to be less about damaged brain circuits and more about trying to cope with the difficulties of living with dementia – and this is perhaps where there is a more realistic hope of being able to improve things. 

In dementia, many everyday tasks need a lot more effort than they used to. This can be tedious, frustrating and sometimes even humiliating. It can make many things feel as if they are not worth the effort. 

Over time, this can affect a person’s willingness to try to do things for themselves. It can be easier and safer to do nothing.

…I don’t know why but I can’t talk, I can’t make conversation. I don’t mean I won’t speak to them or answer them or anything like that, I’m just -, I don’t know, call it quiet. Um. Let everybody else do the talking.

Supporting someone with apathy

There are many things you can do to encourage a person to stay motivated and engaged.

A really important part of this is supporting them to feel useful and have a purpose. Most people want to keep contributing in a meaningful way. No one wants to feel useless.

When a person with dementia looks like they’re struggling with a task, it can be tempting to want to help by taking over.

However, it’s important to allow them space to take their time and make mistakes without fear of negative consequences. The point is not to get the task done, but rather to actively engage in the process of trying. 

Be encouraging and positive where you can. Ideally, encourage the person to take on roles and responsibilities that are within their abilities. This will provide a sense of purpose and help to build confidence and self-esteem. 

[referring to dad with dementia] He’s been writing his own Christmas cards. My sister’s written a list of what he needs and then, to encourage him a bit further, I’ve been writing little…post-it notes…and he’s been doing them.

It doesn’t matter how small these roles are. For someone with advanced dementia it could just involve doing the washing-up or folding laundry.

The point is to help someone to become active and engaged, as opposed to passive and disengaged from everything around them. Getting into a routine may help this.

Sometimes a person with apathy responds better to people they don’t see every day. While this can be good to see, it can also be frustrating if you’re the one who has been trying hard to support them at home.

However, if it gives them a chance to break out of their apathy and gives you a rest as their carer, then it can still be a positive experience.