Dementia and T1 Diabetes

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Hello. I'm a carer for my 86 year old mother who's been a Type 1 diabetic since 1969 and is in perfect health for her age (due in large part to an healthy diet/lifestyle and very conscientious management of her diabetes).
However, she's in early -stage dementia and is forgetting to inject (she uses Trurapi 3x per day and Lantus at night) at mealtimes, or injecting twice. These mistakes have obviously caused huge fluctuations in her BS - from 2-25 - so are a huge cause for concern. My query is to other members who have maybe experienced the double-whammy of diabetes and dementia. Any tips/technology/ideas would be much appreciated!
 
Could you put a sign on the cupboard with the plates in that reminds her to inject? Maybe with a tick chart to tick if it’s done.

Or if she’s just injecting with meals and the long acting then get a container with compartment for each day of the week and just put the required amount of needles in each one then she can see if the needle is gone then it’s done.

You can get insulin pens with a memory function but not sure if she’d remember to check it.
 
Lucyr said:
Could you put a sign on the cupboard with the plates in that reminds her to inject? Maybe with a tick chart to tick if it’s done.

Or if she’s just injecting with meals and the long acting then get a container with compartment for each day of the week and just put the required amount of needles in each one then she can see if the needle is gone then it’s done.

You can get insulin pens with a memory function but not sure if she’d remember to check it.
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Thank you Lucy - I really like the needles in a container idea - worth a try for sure!
 
I’m so sorry that must be incredibly worrying for you. Dementia is really cruel and unfortunately the combination with diabetes makes it very dangerous. The safest option is for you to take over her injections for her but that is obviously a huge commitment.

Have you been able to discuss with her GP and diabetes consultant what coping strategies there are?

Does she currently have a sensor? If she can be prescribed a Dexcom G6 or G7 (not Dexcom one as it doesn’t link to follow) then you can have the follow app on your phone and be alerted to highs and lows. I don’t know if libre has similar options. Having the alerts means you at least know in (near) real time what’s going on but it does mean she has to be able to answer a smart phone for you to be able to check in with her if she’s taken carbs for a low etc if you’re not with her. You can set alerts well above a hypo and see the trends which can alert you ahead of time if she’s taken a double dose hopefully before she becomes dangerously low. My mum is of a similar age and struggles with the lack of buttons on a smart phone though and we had to get her a basic mobile so she’s able to press a physical button rather than hitting a point on a screen so it may not be an option for your mum.

The needle idea is a good one as it’s a quick visual for you as well as to what’s happened. You may find that she struggles to remember what to do if she’s run out of that days needles because of double dosing though. And if she knows where the box of needles is kept there’s nothing to stop her reaching for those instead. Dementia is tricky as it can be so variable and when you’re combining it with habitual things like years of diabetes management it makes it unpredictable as to which will win over her habitual ability to treat herself or remembering if she’s done it or not. Adding in new habits at this point can be hard.

If she’s in the early stages then it’s worth having a proper chat with her on a good day about what her long term wishes are and if you can get a power of attorney in place then that really helps as you can then discuss her medical stuff with doctors and as she gets worse make decisions for her. It’s worth having a talk with her about her care preferences too. Daily carers are probably not an option as I doubt they would be allowed to dispense insulin so if you’re unable to do the injections for her long term then you may be looking at nursing care (she wouldn’t be a candidate for residential care).

It’s difficult when our strong independent parents get to the point of needing care and especially hard when they have memory issues or dementia. Make sure to take care of yourself and feel free to come on here and have a moan or a ‘cry’ about it.
 
Just wondering out loud, would this type of situation be a candidate for a closed loop pump so that the pump adds extra insulin when high and suspends when low. Or would that not be an option because it would be too difficult for someone with dementia to learn to use a pump.

Or at the other end of the spectrum, if she eats set meals at set times, would mixed insulin work and someone going in twice a day to supervise her injecting it? Perhaps alongside a sensor that sends BGs to your phone so that you can see if she’s forgotten to eat and is going low?
 
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Really sorry to hear your Mum is in this situation and must be very worrying for you.
Like @Lucyr, I wondered about swapping to a twice a day mixed insulin and taking it whilst a carer was visiting so that it was supervised and could be accounted for.
 
Thank you everyone for your really thoughtful and helpful replies - it's much appreciated.

We're in touch with the GP who's aware of the situation and 'giving it some thought' so I'll go back to him to discuss some of your ideas.
 
I spent a period of over a year in two hospitals and a care home following a LKBA (Left Below Knee Amputation) after treatment was delayed for many months pre- and during first lockdown. In the hospital there was a part-time HCA who seemed to understand my diabetes better than all of the nurses. One day I asked her how she knew so much. It turned out she also did home (health) care visits and gave a number of people their insulin (needle phobia, eyesight issues, etc.) after checking (or seeing) BG. The care home also had morning and evening district nurse visits to do the same. In fact I was the only one managing my own insulin. Home visits become an issue if the person is unsuitable for only two visits a day or cannot recognise and treat a hypo! Good luck!
 
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