Your tips: what to do when someone's dementia has suddenly progressed

[HarrietD]

Each person is unique, and experiences dementia in their own way. How quickly it progresses depends on the individual, but it can be tough to deal with when you see that someone's dementia has progressed significantly.

Do you have any advice about what to do when you suddenly notice that someone's dementia has progressed a lot?

We're including more real life experiences of dementia in our Living with Dementia magazine, and we'd love to hear from you.

Please add your comments below, and they may be featured in the next issue of the magazine.

This thread will be closed on Monday 8 January.

Thanks

 

[jenniferpa]

You mean things like checking for a UTI or other infection, or constipation. I.e. checking health issues? Or are you asking about management techniques?

 

[HarrietD]

@jenniferpa Sorry if I wasn't clear - we were thinking of management techniques as you say, and how to deal with a situation where you suddenly notice that someone has progressed a lot (e.g. if you were visiting someone over Christmas).

 

[la lucia]

Repetition and keywords started as early as possible. Operating on the 'use it or lose it' principle.

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.

For example, when getting my mother to stand up from a sitting position I would say: "push up, stand up, straighten up" - repeatedly.

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 then only after trying the moves herself did we then give her some help.

This kept my mother more mobile even though she has very advanced dementia. Sadly, a hospital stay where they didn't get my mother out of bed until lunchtime and ignored my requests for using the keywords, now means that my mother's mobility has literally disappeared in a week.

 

[Mudgee Joy]

My experience- When dementia progresses quickly it usually indicates another problem - UTI or Small stroke etc - in my husbands case he went from a 1 or 2 level to a 6 or 7 in a week (UTI followed by heart problems) and it’s taken 5 months to get back down to a 3. The numbers are the only way I can express it overall.
For me the main tips are being there -being patient, look at the person very directly in the face when you need them to listen or understand and reassure them - reinforce all the words with smiles.

I got the old photos out and downloaded old music to play - the other blokes in the ward (when H was in hospital) loved the music too -it helped mask all the hospital issues of noise and busy/ness - also I turned the light down when possible.

So be calm, pretend your not worried and fain cheerfulness.

M-joy

 

[Dazmum]

At my mum’s carehome, they know that when they suggest she does something, such as stand up, and she refuses, they don’t push it which causes stress, agitation and anger but come back in 10 minutes to try again, which seems to work more often than not.

I’ve just realised that this doesn’t really fit in with what to do when you notice that dementia has progressed a lot, but I hope it’s helpful anyway. I think for me, when I had realised that mum’s had progressed, I took the plunge and came on to the Alzheimer’s Forum, which shocked me but also became a lifeline. Compassionate Communication was the first key for me to help mum.

 

[Risa]

When my Mum's dementia suddenly worsened it turned out the medication she was on was the cause and 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.

 

[Mudgee Joy]

Totally agree Risa!
I was really out of my tree until a nursing friend said - don’t panic - she had seen similar ‘extreme dementia ‘ that turned out not to be so !! Helped me a lot - basically I understand dementia happens slowly.
M-joy

 

[nae sporran]

C's dementia took a dramatic turn 4 years ago and that was the signal to get carers in for personal care. That was also the time I found the carers support centre and about a year later I found TP. 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 downwards turns recently and I'm still adjusting, but luckily have POA in place now and I'll just have to read this thread for further ideas. Thank you all.

 

[Linbrusco]

My Mum declined considerably after 2 UTI’s.
Agitation & anxiety, soon followed by anger, shouting at & hitting carers, not eating, losing weight, refusing to bathe or change clothes or even cooperate to get further UTI samples.
Mum was still reasonably independant up to then but now needs total help with showering, dressing, sometimes eating & drinking.
Much like Daz, care staff often go in to her about 4 times in the morning when its time for showering & getting changed, by the 4th time shes in a better mood.
Mums worst times are first thing in the morning, late afternoon.
Also despite medications being a contentious issue, Mum is now on 50mg of Quetiapine which has worked for Mum considerably.
She is not sedated, nor unstable on her feet, unlike when she was on Lorazepam.
Still has the odd off day but less so, fingers crossed.

 

[marionq]

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 I am only able 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 etc.

 

[Bunpoots]

When my Mum's dementia suddenly worsened it turned out the medication she was on was the cause and 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.

Exactly the same thing happened to my dad. I arrived at TP 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!
Someone on TP pointed me in the right direction, Admiral nurse was excellent. I had to firmly insist that the med was causing problems (it was donepezil) not curing them, but eventually the consultant listened and dad's dosage was changed.