Carers' tips: Sudden changes

From the February / March 2018 issue of our magazine, carers share advice on sudden changes in how someone’s dementia is progressing.

Advice from other carers

Risa says,

‘When my mum's dementia suddenly worsened, it turned out the medication she was on was the cause. Once she changed meds, there was a dramatic improvement. So don't jump to conclusions, as we did, and assume it is the illness progressing. Don't panic, and look at all possible scenarios before taking any drastic action.’ 

‘When dementia progresses quickly it might indicate another problem,' says Mudgee Joy.

Mudgee Joy says,

‘When dementia progresses quickly it might indicate another problem – for example, a urinary tract infection (UTI) or mini-stroke.

‘For me, the main tips are being there – be patient, look at the person very directly in the face when you need them to listen or understand and reassure them, and reinforce all the words with smiles.

‘I got the old photos out and downloaded old music to play. When he was in hospital, the other blokes in the ward loved the music too – it helped mask all the hospital issues of noise and busyness. Also, I turned the light down when possible.’ 

nae sporran says,

‘C's dementia took a dramatic turn four years ago and that was the signal to get carers in for personal care. That was also the time I found a local carers' support centre, and about a year later I found Talking Point, Alzheimer’s Society’s online community. It would be have been better to have that support in place in advance, but you live and learn.

‘She has taken a few small downward turns recently and I'm still adjusting, but luckily have power of attorney in place now and I'll just have to read this thread for further ideas.’ 

'Compassionate communication was the first key for me to help Mum,' says Dazmum.

Dazmum says,

‘When I had realised that Mum’s dementia had progressed, I took the plunge and came onto Talking Point, which shocked me but also became a lifeline. Compassionate communication was the first key for me to help Mum.’ 

Bunpoots says,

‘I arrived at Talking Point when I could no longer cope with (or find carers for) my dad due to his behaviour, and over a year on, after a change in meds, we're still standing!’ 

Linbrusco says,

‘My mum declined considerably after two UTIs. Mum was still reasonably independent up to then, but now needs total help with showering, dressing, sometimes eating and drinking.

‘Care staff often go in to her about four times in the morning when it’s time for showering and getting changed. By the fourth time she’s in a better mood. Mum’s worst times are first thing in the morning and late afternoon.’ 

'It is best to give one instruction at a time,' says marionq.

la lucia says,

‘I've been really insistent, ever since my mother had a stroke, on sticking to routines and using exactly the same words for specific movements.

‘Carers would be asked not to assist until my mother attempted the moves. What we found is that in times of diminishing cognition or confusion, when the brain appeared not to be connecting to the body, my mother would start to make the necessary physical movements. Encouragement and further repetition helped keep her abilities. If she struggled to rise, only after trying the moves herself did we then give her some help.’ 

marionq says,

‘My husband is deteriorating and I decided to reduce his medication to see if he would be more alert. I told his consultant what I was doing and she agreed, although told me to still have his usual amounts on hand if needed.

‘The other thing I find is that it is best to give one instruction at a time, eg “Put on your shirt,” and not, “Put on your shirt and jumper.” The latter might result in jumper below shirt.’ 

Next steps

  • Do you have tips about how to get the best results when dealing with health and social care professionals? Email us your advice by 2 March 2018 to share.
  • Join our online community, Talking Point.
  • Read the next article from this issue of the magazine.

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