6 ways to cope with dementia and personality changes

It can be very upsetting to watch the person you love behave in a way that’s very out of character. Find out how to cope when dementia causes disturbing behaviour changes

Could this be you?

You’re able to cope with most of the challenges of caring for a loved one with dementia but it can sometimes seem as if they’ve undergone a personality transplant. Character traits you used to know and love such as empathy, patience or wittiness have almost disappeared. Instead, they shout, swear and embarrass you in public – what’s going on?

Don’t panic

As distressing as it may be to watch and experience, out of character behaviour can be a fairly common symptom of dementia. The illness doesn’t only affect memory, it can also affect parts of the brain that control personality and inhibitions, particularly frontotemporal dementia (Pick's disease) which can involve substantial changes in personality.

Did you know?
Frontotemporal dementia damages the frontal lobes of the brain which are responsible for personality and social inhibitions. If the person you’re caring for is living with frontotemporal dementia it might profoundly alter their character and the way they behave in public. For example, they may undress, make sexual advances, or even steal.

Six common behaviour changes

1. Rage
They yell, scream, swear, pick fights – even physical ones – and are prone to full blown temper tantrums.

2. Loss of inhibition
They make rude comments to strangers, family or carers. For example, ‘Look how fat she is!’ ‘Or ‘I’ve never really liked you.’ They might also touch their private parts in public or try to take off their clothes.

3. Hiding and hoarding
They refuse to throw anything away, even if it’s falling apart. They’ve bought so much food/washing powder/ loo roll that there’s nowhere left to store it. You sometimes find it stuffed behind cupboards or under beds, but they still keep going out and buying more.

4. Paranoia
They obsessively count money or examine bank statements then accuse carers/children/friends of stealing or spying on them. A partner might be accused of having an affair, or of selling their favourite possessions.

5. Neglecting personal hygiene
They refuse to take a bath or shower, hate brushing their teeth, rarely wash their hair and would wear the same clothes every day if you didn’t take them away and wash them.

6. Passivity
A once gregarious, sociable person now sits in a chair all day, reluctant to do anything, go anywhere or even say very much.

Six ways to deal with it

1. Look for meaning behind the behaviour
However out of character the behaviour, there is often a reason for it – and it’s sometimes more obvious than you might imagine. For example, could trying to take their clothes off mean they’re feeling too hot? Could refusing to bathe be because they’re forgotten how to, or are afraid to be in the bathroom? Check out how to make bathing a more pleasant and safe experience here.

2. Learn the value of distraction
If their behaviour is embarrassing try to distract, play it down, or ignore it whenever possible. For example, if they make an embarrassing comment, try changing the subject very quickly to something more pleasant. For example, if they’re criticising other people’s appearance try a compliment, ‘you’re looking very smart yourself today. I love what you’re wearing. Shall we do some window shopping now, or do you fancy a cup of tea?’

3. Be alert to early warning signs
Notice when trouble might be brewing and you’ll have a better chance of limiting it or reducing its impact. For example, if they didn’t sleep very well they might be more likely to become angry or aggressive. Try playing some soothing music or suggest a nap and talk in a gentle voice. Perhaps relaxation techniques help. Could passivity be a sign they’re feeling depressed or lonely? Find out what might help here.

4. Try not to take it personally
This might not be easy, but if you can keep reminding yourself that their behaviour is a symptom of dementia – it’s their illness talking, not them – it can make even the most outrageous behaviour easier to bear.

5. Step into their shoes
It might help give you a new perspective. For example, perhaps hoarding is a sign they’re afraid. Obsessively holding on to possessions might be the only way they have to retain precious memories of the past. Could you try to be more patient, or even light-hearted about it? Humour can be a great way to ease tension and create a calmer atmosphere which could, in turn, make their behaviour easier to manage. Putting together a memory book or memory box with some choice items that really stir happy memories might be a nice way for them to maintain them without having to hoard items away.

6. Take a break
Never underestimate what a difficult job you are doing and the importance of having regular ‘me-time’. A change of scenery could be one of the best ways to relax and recharge your batteries. Find out how to get respite care here and for some instant support from people in a similar position to you, go to our community forums here.

Did you know? Urinary tract infections can often cause a sudden change in behaviour which can be confusing for many carers if they don't realise that the UTI is behind it. It's worth taking them to the GP or testing for a UTI to see if that's behind the out of character behaviour.