Coping with changes: As dementia develops and especially after lockdown

We asked members of Talking Point what they’d say to help someone deal with how much a relative or friend with dementia has changed over recent months.

Talking Point is a helpful community that’s free and open 24/7, where anyone who’s affected by dementia can get valuable support online.

mickeyplum says,

‘The changes in my 92-year old husband over the past year are probably similar noticed by other carers. 

‘His mobility has worsened, meaning he is reluctant to leave the house to try and walk more than a few steps outside. He’s losing more sense of where he lives and where “home” is. He’s lost sense of which family member in the family belongs to who – doesn’t recognise words like daughter, grandson etc so I try not to use them. 

‘I notice subtle changes almost daily and try and adjust my responses accordingly.

‘Mainly, never contradict him or tell him he’s made a mistake. Sometimes he says his memory is terrible and looks worried.

‘In the beginning I used to say it was simply due to changes in his brain that occur as we get older. He can no longer grasp statements like that, so nowadays I just reply, “Yeah, my memory’s the same sometimes,” and change the subject. A moment later he’s forgotten about it.’

karaokePete says,

‘One thing I found most useful was reading as widely as possible, as that has meant that when some new change occurs it hasn’t thrown me. 

‘An example of that was the time, about a year ago, when my wife asked, “Which Pete are you?” I immediately thought, “Oh, the Capgras delusion,” and was able to deal with the situation very calmly.’

PARKLEYS says,

‘I found the best strategy was to ignore the thing that had gone wrong: do nothing about it, say nothing about it but immediately introduce a distraction: move to a different position or different place, talk about something entirely different, give them a very simple task (which you know they can do). 

‘It’s heart-breaking: it all is – but that strategy reduces the stress they feel when things go wrong.’

Dartist says,

‘Keep the atmosphere calm and don’t contradict, try accepting the new version of your loved one. 

‘Don’t overload them with facts of old life but try to keep to your routines. I found that gentle touches meant a lot to my husband – reassurance. The sense of touch seemed to stay with him to the end. 

‘I knit and he used to love holding the ball of wool and “sorted it out”. I think as a boy he used to help his mum holding the skeins of wool whilst she rolled them into balls to knit with. So it’s worth trying to reconnect with skills.’

DennyD says,

‘From my experience, the start of the lockdown was quite positive for me and my husband. There were not many people around which helped manage social distancing when out. He was at a stage where all other guidance did not make much of a difference to his general demeanour. Other than repeatedly have to explain what he was picking up on the news. 

‘It became quite different upon emergency admission just before Christmas. Dealing with the changes that brought has been intense and difficult.

‘I would say how you deal with it depends on how contact and controlled visits have been managed by care providers.

‘I felt very restricted and the strictly supervised visits undoubtedly made matters worse for my husband. I firmly believe that deterioration speeded up due to Covid restrictions.’