Managing T2 Diabetes + Dementia

[MidnightMay]

Hoping there's people who've been in similar situation or problem solvers as ive only a basic knowledge of diabetes and many of the usual suggestions to managed it aren't so easy when the person forgets their diabetic🙈

My dad's been T2 for many years but has developed memory problems. We saw the GP for a referral to the memory clinic some months ago but it's been rejected due to having uncontrolled diabetes, as id mentioned during his consult that his glucose readings were high and poor memory was making it hard for him to manage.
We've seen the diabetes nurse over past few weeks and they've increased his Glicazide dosage twice. The recent HbA1c was 100 and it was 110 at annual review in April but I'm not sure if that triggered any action from the practice. Should they also be monitoring B12 levels as read that Metformin reduces it which he also takes.

We've had carers in to solve the sporadic meds & do the finger prick glucose test although this isn't accurate as he may eat before carers arrive and not remember doing so if asked. I'm also having to ring daily before bedtime now to get him to do a test then but if he doesn't answer the phone or doesn't want to there's little I can do as not local which is less of a concern while it's still high but needs a future solution.

He is still able to shop so we can't really restrict what's available to eat or moderate quantity of things consumed like bread. Hes not overweight and seems to have lost weight since photos last year.

I did ask nurse if the continuous glucose monitor maybe better to see overall daily pattern instead but then we weren't sure how would get him to keep a charged phone within Bluetooth range, especially when goes to bed. He may also forget what it's for as he does with his fall/alert bracelet.

@MidnightMay I would certainly try a CGM once, the carers can be briefed to keep the phone charged. It will give you an idea of peaks and troughs.

That was how I hoped it may work so at least we'd see the low points over the day to figure out if it's a just eaten high or more a constant issue. Does the app only receive data when phone + CGM in bluetooth range or is it like a Fitbit where stores some if out if range then syncs and downloads to app.

He usually leaves his mobile near him in living room anyway so it's mainly getting to take with him to bed unless could connect to 2 on phones and leave one permanently in there . He rarely uses the mobile so thankfully it doesn't need charging that often so sure carer could do that.
I've seen you can get sticker to keep them on so perhaps could write on what it is, he's good at wearing the alert bracelet as the carers check every visit just forgets exactly what it's for.

The CGM I am familiar with does store data for up to 8 hours. All you need to do is rescan the CGM with the phone and it downloads the data.

I certainly don’t always keep my phone by my side in the house. . I have also had my phone battery die and as soon as it’s charged I scan the CGM and the data updates.

I don’t wear a CGM all the time and I pay for mine as I’m not eligible for them on the NHS. I choose to do this because I wanted information to help me manage my T2 better.

https://www.freestyle.abbott/uk-en/home.html

You can get the first one free and I think it’s worth trying it to see if it helps.

The other thing I choose to do is wear the sensor on my chest rather than arm It’s not licensed for use there but I find it much easier to keep the sensor on.
Edit: I also use skin glee and a patch. Mine is now stays on 15 days with no issues.

If you look on YouTube you will see there are videos about CGM.

My advice is talk to your Dad’s Diabetic Nurse or Doctor first and if they say OK try it.

Ask your GP for a referral to the community diabetic team as they could send out a district nurse for BGL checks for a short while and see if he needs a change to his treatment. Failing that, ask the GP what the risk is of his uncontrolled diabetes in the short term and what they plan to do about it?

I can't see much point in doing regular random finger prick blood tests for your dad. The main point of those is to react in the moment and adjust insulin dosage, and you've made no mention of his using insulin.

The only time I'd bother with a RBG like this for your dad is if he is acutely poorly and you're concerned that he's hypo or ketotic (though RBG won't measure ketones of course, and he must run a pretty high sugar all the time with those HBa1 readings). Or I might do them sometimes if your dad could be shocked by high readings, into leaving out sweet "treats", but only you know if that's likely to work for him. Having your finger pricked every day is no fun and if it's not achieving anything, why put your dad through that?

A CGM for a fortnight might be useful but I think you'd need to pair it with a very close and accurate food diary to see if any particular foods cause surprising readings. Of course, you already know that he doesn't follow a careful diet and that his blood sugars are persistently high, and sadly it doesn't sound as though your dad will manage the food diary. (And would he be honest about his intake? We all pretend to ourselves that we don't have those "occasional" treats!)

Ultimately I think the best way forwards might be to request more regular HBa1 readings, explaining that this is with a view to a referral to the memory clinic. Would the GP surgery be prepared to monitor on a 3 or 4 monthly basis for now, in these circumstances? (HbA1 gives an average over the previous 3 months, so no point doing it more frequently). Has the memory clinic given a target for your dad? It would be very helpful if they were to give guidance on this; after all, he's diabetic, his blood sugar is never going to be normal, so how much slack do they allow before they accept the referral?

Be aware though that the memory clinic is sadly unlikely to have any magic cures for your dad. If you haven't already done so, I'd look at charities such as Age UK and Dementia UK for ideas on how you can help generally.

Sympathies - looking after parents who won't or can't look after themselves is very hard.

BTW. With HbA1 in 3 figures, I doubt if there are any troughs to speak if in his blood glucose reading. He will be running high when fasting and higher still after eating.

When is his next diabetic review?

Uncontrolled diabetes will be why he's losing weight.

Another thought @MidnightMay .

Missing doses of medication can have more profound consequences than people imagine. If he'd been missing one days worth per week, that reduces the weekly dose by 14%! And if he didn't have a regular routine of taking his tabs, that could have been a lot more.

So it's great that there are now people to help him with that but can I ask how long they've going in? If it's pretty recent, then his readings may be improving already.

Sadly, unless your dad's diabetes diagnosis is pretty recent, with readings like his I suspect he's been ignoring dietary advice and his tablets for a long time (he will not have told you this), and of course if you've not got into good habits then you're not going to suddenly learn them when memory loss supervenes.

@Mauvish1 no he's not on insulin, has glicazide originally 40mg x 3 daily now 120mg AM & 80mg PM ( nurse said max was 360mg daily so room to increase bit more ) and Sukkarto SR 500mg x 2 daily

When I've stayed over so can do test pre breakfast it's been 14/15nmml and down to 12 last week with increased meds I'll be over pre appointment next week to check again. Pre bedtime so it's less likely he'll have snacked in 2 hrs before it's been 14-16 with odd 19.

@Isadora2007 He's now visiting the practice diabetic nurse nearly weekly for past couple weeks to adjust his meds to try get it under control but this seems to have been triggered by the referral rejection, I was about to book in anyway since then had data that with carers giving regular meds & tests for couple months & it wasn't much difference to when I stayed over for a week in summer while wife in hospital. I'm not sure why this didnt happen after his april review but his brother would usually go with him to appointments.

I don't know what controlled would look like to the Memory clinic as they only contacted the GP, does high blood sugar also cause dementia like symptoms?
I was hoping with the Memory clinic expertise they'd do diagnostics to confirm dementia and not something else that maybe treatable give the myriad of conditions which also cause cognitive impairment symptoms. He scored 8/10 on GP tests but working/ short term memory seems very poor in daily situations and I've ADHD so my own is pretty crap.

Dietwise in the past he'd have odd digestive biscuits but otherwise very rarely any sweet treats and while wasn't perfect with diet and had old diabetes nurse ( moved area) telling him to lose weight he's been slim for about 5yrs. He was quite vocal that he couldn't have xyz due to diabetes and while shopping with him. Now he'd gobble down a cake if there so I don't think it's that he doesn't care about diet more he doesn't remember to be able to curb the impulse and perhaps he craves sweet more than used to. I've seen him have 2 slices toast 3 times in one day.

Diet is also tricky because dad & wife ( recently diagnosed with advanced vascular dementia, she quickly declined after delirium in summer but wasn't noticeable before) have refused the carers help in making meals although they only really do quick to make or heat ready meals and we were also chucking away a lot of out if date food they clearly didn't eat so not sure what they have. I think on his own my dad seems more agreeable to carers help and I'm happy if they just prompt him to do it, but his wife doesn't really like them coming, because of his impairment in don't think he realises when her requests are unreasonable.

They've been getting Meals on Wheels for lunch for past couple of weeks which doesn't really cater to this type of dietary need but so far it's hit and miss whether they get eaten or stuck in the fridge for later which we then bin as can't be reheated a 2nd time, so I've now had to request driver to dish up or at least prompt dad to do it. He does seem to like them when I've been there, wife not so much & told driver twice the didn't want anymore.

They pay privately for care, we've requested SS care assesment but they will only do wife's first then look at dad later.

Thanks @Harassedevictee it's really useful to understand how they work from a users experience and that there is a free trial to see if may work for him.

It was only a brief discussion with his diabetes nurse but she said the ones need to tap to initiate checks would still have same issue as the finger prick test and we wasnt too sure on the continuos recording type if there wasn't a phone in Bluetooth range. I'm not sure if he would come under NHS criteria for them, they do seem very expensive for something you bin fortnightly or may even fall off and be useless so I can see now why those extra stickers to keep them on have come about.

There will come a time when you either let them be or try to force them. If you have health poa the second is legal.

My mother-in-law used to hide her metformin all over the house pretending to take it. Then there's the later stage where they just stop eating and drinking and fade away. We were told to consider when trying to get people to take their meds is it in their best interest long term and there's a point when it will make no difference.

Sorry to sound blunt but I've been there