AIBU To think this is an urgent appointment?

[Glitter99x]

Hi bit of a sensitive topic here. My DP’s grandmother has suspected dementia. All the classic signs- forgetting often, asking things multiple times etc. Over the past year it has gotten worse, even her brother who lives in Fife and doesn’t have that much contact with her, has noticed within a few months how much she had changed. She thinks DP and I live together, we don’t and we have said this before, she was adamant once her daughter (DP’s aunt) was mad at her when she had been there the day before. That his mum hadn’t taken them shopping when she had that day earlier. I may be not that accurate about the last two incidences but they aren’t far off if they are a little wrong.

Anyway, my DP’s grandfather who lives and is married to his grandmother is worried sick, they are elderly. It’s too much for him to cope with, he has us of course but he is struggling. He confided in the pharmacist when getting his medication. The pharmacist without even being asked booked an appointment for DP’s grandmother, which was really kind. DP’s grandmother is Very stubborn, and there is no way she would of gone if she wasn’t told it was for a checkup. We thought it was with a doctor she would be seeing. It was a nurse. DP’s mum went with them as she was worried DP’s grandmother would kick off 😂. This nurse was pathetic. She didn’t know what grandmother was there for, DP’s mum had to actually tell her she was there for a blood pressure test and blood tests. They had thought she would be seeing a doctor regarding what we think is her dementia. DP’s mother and grandfather went to the receptionist and told her it is urgent, she needs to be seen ASAP. They were told a three week wait. AIBU To think that they should be prioritising a dementia appointment at the doctors? That is should be an emergency? DP’s mum said it is an emergency to us, but not to them, as it doesn’t affect them. I’m sorry but surely a dementia appointment is more important than a person with an infected toe for example?! She is elderly!!!!

I would try to get a urine sample to the GP to test for a UTI.

It’s worth a try but very unlikely. The Op is talking about deterioration over the last year.

VioletCharlotte
It's the same in our area and friends have had the same in other areas.

It's a full assessment process with lots of specialists, or in the case of an emergency where they are a danger or hazard to themselves, sectioning and staying in a residential unit pending psychiatric and social services involvement.

Unfortunately it's not an emergency. Your example of someone with an infected toe is a poor one, as it could turn to sepsis and kill them. Dementia is awful, I know as my grandmother has it. But it's not life threatening. It's a long process, even the vascular dementia that's supposed to be faster progressing than other forms is still long and drawn out.

To be honest, you'd probably need to contact social services, they can help push for a diagnosis and get a care package set up for you.

Its not urgent or life threatening but definitely needs seen by a GP.

@Glitter99x You can get a medication to help it and the sooner the better

Not for all forms of dementia. Only certain types and it doesn't stop or cure them, just slows the disease down a little.

Whilst in agreement that it's not an emergency, this thread has made me realise how used to treatment delays we've become. We should be up in arms that it takes three weeks to get a GP appointment, but now it has become the norm.

So YABU to expect an emergency appointment, but you're definitely not unreasonable to expect to be seen in less than three weeks.

It’s not urgent. And actually from your OP I gather that it was the grandmother who was told the appointment was for a blood pressure check rather than the nurse? So on that score it sounds as if this was done to protect her thoughts and feelings at this point rather than to deceive the medical profession.

However, your example of an infected toe is a very bad one. That is here and now and if not addressed could lead to serious consequences. I had the flu a few years ago and couldn’t get an emergency appointment after my symptoms were still worsening after ten days. I developed endocarditis, sepsis and now will likely need a heart transplant. Whereas dementia is a progressive illness which has no cure, and will progress regardless of whether she is seen or not. And no, the health of their partner is not their consideration when giving out appointments.

I'm so sorry OP but this isn't an emergency regardless of the impact on DP's grandfather's heart condition. I'm afraid it's a bit of a hoop jumping exercise and nothing can be done without a formal diagnosis. Once you have that you may be able to get some help with care and support but in the interim it's left to family to fill the gaps. I know this isn't want you want to hear at all but it sounds as though you're at the beginning of this journey so first step is to get a G.P's appointment and go from there. In the interim try Dementia U.K. for advice and guidance - they should be able to help you get the best possible outcome for granny. Good luck OP.

I understand as my aunt has dementia - and in her case it gets much worse when she has a UTI ( not sure why but when on anti biotics she is much better) . In her case she is not able to live at home but tbh she has not got much worse .she knows who we are and can have a conversation etc. But everyone is different . Diagnosis took a while . Its always very sad .

It's shocking when you first encounter dementia in a loved one OP so I totally understand your panic.
It's also not unusual, if you've had no experience of it before, to realise that the provision of support for people with complex needs just doesn't exist.
It's a hard lesson to learn.
Please encourage your DP's Grandfather to make the appointment with GP, in our area it meant we were referred to a Clinic and then tests and scans were done to confirm (as far as they're able, in reality only post mortem diagnosis are accurate) and there are drugs but some are contraindicated if there are other illnesses. My Mum was unable to take them as she had dreadful hallucinations and dreams in an otherwise benign dementia 'journey'.
The reason people are talking about UTI's is because in a person with dementia it can escalate emotional and mental issues x1000 and a dose of ABs brings back the status quo.
Please contact Social Services and ask for an assessment for your DPs GM and also GF. If nothing else it gets them on the radar and a diagnosis isn't required for that.
Big breaths, its a hard and scary thing, for the person who's ill but also for the family.

Also try Talking Point a forum on the Alzheimer's Society website. It is full of people who will help and support you and your family.

I agree with you, OP. The sooner drugs for dementia are prescribed the better. In order for that to happen she’ll need a referral to the memory clinic which could involve another few weeks’ wait. I’d be mightily pissed off if it was my relative.

Something can be massively important and stressful for the family without being an emergency. An emergency is not the same as serious, a more minor condition that could turn nasty without immediate treatment might be an emergency even though it is not as serious as dementia in the long run.

Yabu, an infected toe could turn into septicaemia.

I agree with you that this is very distressing, but it's being gone on a year and is not urgent or an emergency.

Hi @Glitter99x. I am sorry it all went pear shaped for your DP's grandmother.

A couple of things though. Most times a GP will refer a patient to a memory clinic - usually attached to a local hospital. My mum was suspected with dementia (Alzheimer's and Vascular) in October 2013 and didn't get a memory clinic appointment until December 2013. We got her diagnosis in February 2014. These things do take time. My mum had to have a pair of clinical nurses from the memory clinic do some basic tests (like who was prime minister, what day it was, what her writing was like, her cognitive responses), then they recommended the memory clinic for CT scan etc.,

You can (or your DP's mum) can go and see a GP to discuss this or telephone them with your concerns. It could be that the GP could refer your DP's grandmother direct to the memory clinic (if there is one in your area). It's unlikely the GP could make a diagnosis without referral to a memory clinic (though I stand to be corrected - that's how it happens in this area). Some memory clinics do need GPs to do certain tests ahead of the appointment.

As far as medications are concerned it depends on other medications. For example, my mum was on warfarin and insulin. She was not offered dementia drugs because they can make users dizzy. Having a dizzy spell could result in a fall which could cause diabetic coma or bleeding on warfarin. As she lived alone it was felt it was too dangerous.

The issues around urgency are things like: getting power of attorney set up. If the person has finances/property someone has to be power of attorney. Banks can't talk to anyone, not even spouses, without it and that can cause hardship.

Personally I would call the GP (your DP's mum is the best option or his grandfather as they are next of kin) to discuss the issue.

The other people who may be able to help is the Admiral Nurse organisation. They can advise on everything around dementia and are there to support families. They can help with how to spot the signs and may be able to advise you on how to get the diagnosis. The normal 10 minute appointment with a GPis probably not long enough. They'll know the procedure in your area. They can't pull strings obviously, but they can advise you if there's a structure to follow to save you wasting time getting appointments with the wrong person etc., Their main number is 0800 888 6678

Good luck. My mum is now in a nursing home - we managed to keep her at home between us and carers and GP surgery staff for 4 years before a series of falls made it too dangerous. She loves her new home, is always smiling and we know she's safe so that's all that matters.

Do get someone to make that phone call to either the Admiral Nurses or the GP to discuss this. It takes time to get into the system and whilst three weeks may just be what has to be endured, it'd be good to know that is the case rather than finding out a simple call could get her into the system quicker.

And do make sure your DP's grandfather takes every bit of help available to him, from carers allowances/attendance allowance, to day centres (to give him a break), and carers in the home. It is his and her entitlement, it is not charity, begging or a case of he can manage. My GP told me that his job was to keep me well as I was main carer for my mum and my DS - as he said without me everyone falls apart. Without your DP's grandfather everything falls apart. Keep him well and give him support.

Haven't read full thread but it's not an emergency unless she has deteriorated very quickly or is physically unwell as well. If it's a diagnosis of dementia that the family are looking for that that would be classed as routine and what would happen where I work is that the GP would ask questions/do a kind of questionnaire with her and family, arrange blood and urine tests and refer to a memory clinic who actually make the diagnosis. No medications can be prescribed unless recommended by the memory clinic. The wait for the memory clinic is likely to be at least a few months. The medications only slow down the rate of deterioration of some types of dementia they don't usually lead to an improvement.

If the problem is that someone needs more help/care then a social services assessment can be requested before/without waiting for a formal diagnosis as it should be based on needs not labels although sometimes social workers like a label/maybe in speeds things up.
If family can afford private help/care then you can just get on with it. (meals on wheels, home helps, cleaners etc can all be arranged with any social services or NHS involvement if there is enough money to pay for them).

Good luck.

Why are elderly people a priority?
I'm a practice nurse and if anyone is struggling practically you need to contact social services. Dementia assessment is not an emergency, and in fact, referral to a memory clinic can take weeks anyway. Medication isn't always given, and isn't always effective.
Change your attitude.

If it's not been an issue for a year why is it suddenly an emergency? And why didn't one of them tell the nurse why she was really there? The nurse can't read minds and if she was told it was a blood pressure check that's what she will have done. Even if the nurse couldn't make the dementia referral herself she could have asked for a doctor to do it or helped arrange an appointment with a doctor.

3 weeks isn't that long and dementia is unlikely to become an emergency in that time, obviously assuming no infection or injury but in that case you have 111/a&e for immediate medical needs. Surely short term the family can help out.

By the way an elderly person presenting in A&E is routinely given capacity tests. It’s a shitty way of circumnavigating the system but worth bearing in mind.

BTW the reason a UTI is significant is because UTIs can have similar symptoms to dementia. Our elderly neighbour's daughter was very concerned that her mum had dementia but it was a UTI and she was back to normal after antibiotics.

Dementia isn't an emergency. Our Mother was doing very odd things, which made us suspect dementia, I made an appointment with her doctor, of course Mother was arguing there was nothing wrong, I just talked over her and told the Dr the facts. She got referred to a Memory clinic and they performed tests. There's little help out there, as a family we organised things, like stopping her driving, gave our phone numbers to neighbours, told her friends, shopping etc.

We are 5 years in now, thankfully she's stopped going out every day, visiting charity shops and filling her flat with complete shite. We have carers going in twice a day and she goes to a daycare centre twice a week, which she loves. All in all she's quite happy and content watching reruns of Coronation St and Emmerdale.

Going to the GP isn't going to bring closure. As a PP said, they can't diagnose dementia in one appointment. You also seem to think there's a medication that will help. There's medication to ease some of the symptoms but it doesn't slow it down.
Getting support for a relative with dementia is a long, slow, ongoing process as symptoms change and develop. You need to adjust your mindset to it. Getting frustrated won't help anyone.
(and yy I do have experience of dementia in my family - two close relatives have had it)

My fil was diagnosed with alzheimers in January. He first visited the gp the previous august. Diagnosis takes quite a time. He had to have a series of tests and a brain scan. All of these, of course, had to be waited for. He is now on medication specifically for the condition, but, tbh, we can't see any difference. He now gets attendance allowance and has carers and family going in all the time.
Is a horrible disease, but it's not an emergency at all, and was never treated as such - just the usual method of going through the long process necessary for a correct diagnosis.
I have to say that the help and advice we received (from medical professionals)after diagnosis has been excellent and is continuing.

If you really want to speed things along OP it would be worth looking for a private consultant in your area who deals with dementia and getting a preliminary appointment with them , it’s fairly easy to transfer back to the NHS in most cases .