Urology referral - mil with dementia

[Chisbots]

Mil is in a carehome with dementia and now her mobility is very poor. She refused medical care whilst at home and the couple of visits to A & E is what led to her needing a carehome environment.

Her new GP has referred her to the local hospital for tests after recurrent UTIs.

Anyone got any clue what this might involve? I know it could be anything but even a few pointers would be helpful.

We're going to try to ring the hospital to find out about the appointment but there isn't a named consultant, it's just a generic Urology dept.

We (Bil, Fil and DH) are trying to weigh up the benefits of treatment to the probable severe distress and decline that a hospital visit would cause her. She does not have capacity and we're also worried about Fil, he's already been to the hospital to try to work out how hard getting there will be.

It will probably be a scan of her abdomen (you have to drink lots beforehand) and/or a cystopy (sp.?) which is a camera into the bladder. A call to the hospital is prob a really good plan to clarify what is involved.

Ah, ok. We figured it might be something more than just an external examination.

There's no way she'd cooperate with that and it would be completely distressing for her. We'll check with the hospital and make some decisions.

My DH Grandmother was hoist dependent in a care home and 6 months before she died she was referred by a GP to get a mammogram for an inverted nipple! Sometimes people just see a problem that they need to solve rather than thinking about the whole picture. My own grandmother is in a nursing home with a lot of nursing needs and I wouldn't personally be ok with them transferring her to hospital. Its definitely a discussion to be had as a family and your DM herself if able.

It's impossible to discuss medical needs with her, has been for years. Insists she's fine and had consistently refused medical care for the last several years. It was very hard getting her dx with dementia as she refused to leave the house.

We've popped over to the hospital and they reckon it's just a appointment with a consultant, who may then suggest tests.

I think we're going to go back to the carehome and the GP and see how she currently is and then make a decision.

Ask to speak to the GP, the problem with reoccurring UTI's is they often increase the dementia symptoms and can push the older person into delirium. It sounds like the UTI's aren't responding to antibiotics. Normally with care homes they can arrange to take a resident if it isn't possible for you to do so (not sure if that's something you've considered?)
A urology consultant would be looking at what bacteria is actually causing the infection and whether theres other ways of treating it (my dad had reoccurring UTIs but higher up in his system so antibiotics weren't doing anything.

I think we've already decided that the carehome staff would need to take her, for various reasons.

It's a really tricky one.

If you don’t think it will benefit her, then refuse the appt. Ask what other options there might be- bladder scan could be done at the home by district nurses to check for retention and a catheter could be inserted if that is the cause… medication could be trialled… other non invasive options should surely be tried out before distressing her. It’s a shame but no one really seems to be encouraged to consider a reasonable ceiling of care for elderly and frail patients who have little or no quality of life and should be allowed to decline physically and die in peace rather than being forcibly kept alive for years beyond what is beneficial to them.

My DM had a major issue with recurrent UTIs which exacerbated her dementia and led to major confusion. After an appointment with a urologist (it definitely involved scans but my DSis took her so I’m hazy on the details), she was put on a low dose antibiotic (this was 10 years ago, thinking may have changed on low dose antibiotics). This solved the UTI issue and made her much more comfortable. We were never in favour of invasive procedures once the dementia took hold, but we didn’t want her in distress or uncomfortable and unable to express it clearly.
Luckily, my DM was a retired nurse with medics in the family, so medical settings didn’t bother her at all and she was always agreeable to whatever was suggested but my greatest fear for her mental health was a hospital stay.

I agree some medics don't seem to make any effort to understand dementia. I was offered a few hospital appointments for my mother and I refused them, because the whole process, and even the journey, would have upset her and not offered her any significant benefit.

I would ask if more conservative treatment could be tried first (like daily low dose antibiotics) because if they want her to have scans or other treatment she won't tolerate that anyway.

(The optician who visited the care home when my mother had advanced dementia wanted to provide reading glasses 'so she could read again'. The care home manager agreed with me that my mother being able to read again would have been a miracle, and no glasses were prescribed.)