What usually happens after dementia diagnosis?

[OutnumberedNotOutdone]

My MIL was diagnosed with dementia just over 8 weeks ago. FIL was told of the diagnosis in a phone call (not sure who from) after MIL had undergone a brain scan and also done a memory test. No details of what form of dementia were given but FIL was told an Admiral Nurse would be in touch. Since then, the nurse who is lovely has visited twice and she has also had a phone consultation with FIL and DH. Some support seems to be being arranged, with someone (again not sure who) going to help FIL complete carer forms. When my DH mentioned to the nurse this week that MIL and FIL hadn’t had any more info on diagnosis or medication (if appropriate), she said all she could do was tell her boss who meets with other managers every week.

MIL has numerous episodes each week now where she won’t go to bed (sitting on top stairs in early hours) and is frequently saying that her husband is an imposter and he has taken her to a different house and she wants to go home. She talks about other people being in the house too. Such episodes have really ramped up in the last couple of months and are happening every couple of days.

Just wondering if there is a usual pathway that follows an initial phone call when someone has dementia? Should we be expecting contact from the GP or a hospital? We don’t even know who to contact to chase things up apart from mentioning it to the Admiral Nurse.

Thanks!

When my dad was diagnosed he was referred to the local Memory Clinic by the GP, then Adult Social Care.

I think by the end we'd had HCP from nine different departments involved so it was really helpful to keep a brief diary of who had visited and when. Unfortunately the different departments didn't seem to be "joined up" in any way but I think it's very much a postcode lottery.

One thing no one told us, my parents should have been given Council Tax discount for my dad.

I would be phoning their local Adult Social Care, the details should be on their council website.

I'm not sure what usually happens I'm afraid but I can help with moving forward.

Do any of you have a POA on her OP? If so, can they talk to the GP and see if she should be on medication or going to the memory clinic?

Sounds like you also need to apply for attendance allowance if you haven't already and possibly pension credit.

Agree that she needs a Social Worker. Your DFIL should also get a Carer's assessment. Is he in touch with the local Carer's Association too?

You should also fill in the Herbert Protocol and file it with her local Police Force and I'd also fill in a This is me form which is useful if she has Carers or goes into hospital. Keep both forms somewhere where you can easily access them so that you can email them in the middle of the night if needed.

We were in a very similar situation with our DMIL last year. The paranoia and delusions that someone was trying to kill her came on quite suddenly but were very real to her. After reading up on Delirium and people with Dementia we contacted 111 who advised us to take her straight to A&E.

In the end it was the best thing that could have happened.
DMIL was properly assessed to find out if anything was causing the delirium, like an infection and had her care needs properly assessed.

It's a lot of work filling in the forms, dealing with SS and helping them, for a while I felt as if I had 2 jobs, my regular one and doing all of this.

What happens? Nothing really...you get a bombshell dropped and are left to get on with it until things become utterly intolerable.
Lots of good advice above. It'll be down to you to push for help though. Engage with as many people and agencies as possible. Focus on the carer as well as the patient. That includes you and your husband if you're involved.

Not possible at the moment, but informal dementia drop in sessions with other people in the same position are really helpful (usually in cafes and the like). Especially taking to other carers who are further down the line and know the system. There may be online equivalents though.

Sorry about your MIL, dementia is bloody awful.

It doesn't seem like there is any usual pathway. We've had nothing to do with admiral nurses. We saw a GP who prescribed medication. Later we saw a different GP who referred us to the memory clinic. Another time we saw a GP who referred us to the adult mental health team. This was really helpful as more medication was prescribed and we had regular contact and advice.

Thank you to all who commented above. Hearing from people who have walked this path before us is so helpful. My FIL has now had further discussions about medication for MIL (not sure with whom though, it’s quite hard to get the info from him) and things seem to be moving on the Attendance Allowance application. The Herbert Protocol info above is really useful; I hadn’t come across that before.

Applications for LPA for both FIL and MIL were submitted last autumn (health and financial). We are just awaiting the final paperwork through. My DH and his DB will be the attorneys for both parents.

On LPA, does anyone know the significance of not listing a spouse as an attorney? Because my FIL is not registered as an attorney for MIL does this mean that my DH and his DB will act for MIL when she is deemed to have lost capacity (probably quite soon in her case) and that their wishes will override anything FIL might wish? Obviously they would make decisions together but I am wondering if health and social care professionals would start going directly to my DH and his DB rather than to FIL as they do currently as MIL’s next of kin.

In my mum's case, a trip to the memory clinic where she cried so they abandoned the testing. An annual phonecall to my dad since then.
So very very little.

Re the LPOA. When we visited the solicitor to arrange it for my parents he advised not having them listed as LPOA for each other purely due to their ages.
So my sibling and I were both listed, for both parents.

Fast forward to my dad then getting dementia. My mum was his carer, despite being in her late 70s, she was still very alert.
We found that it depended on who we were dealing with as to whether they wanted to discuss something with my mum, or me (LPOA) or both of us.

Mostly they dealt with my mum, as she was the one living with my dad and providing his care.
There was one instance where there was a disagreement with a particular HCP, who then told my mum that she wasn't prepared to discuss it with her because mum wasn't LPOA, but it seemed a bit petty at the time because everyone else had been happy to do so.

It might be an issue if you are in a situation where you can't agree on a course of action.

On LPA, does anyone know the significance of not listing a spouse as an attorney? Because my FIL is not registered as an attorney for MIL does this mean that my DH and his DB will act for MIL when she is deemed to have lost capacity (probably quite soon in her case) and that their wishes will override anything FIL might wish? Obviously they would make decisions together but I am wondering if health and social care professionals would start going directly to my DH and his DB rather than to FIL as they do currently as MIL’s next of kin.

That's exactly how it worked when my DF was ill. Not sure if it's the fact that we had LPA it the fact that my "D"M is really very hard work and bonkers that encouraged the HCPs, Hospital and Hospice to deal with us directly.

If your DH does have LPA, make sure he lets the bank and doctors know

Yes contact adult social service and ask for the relevant assessments. It might be an idea to think about carers for example. Who will help her with washing, dressing etc when the time comes? Someone that can help prep food whilst your FIL pops out. Someone to help with chores, practical support for your FIL. Be very very careful of over promising your input. Older people often don't want to pay for care and are quitne happy for family to run themselves ragged, but remember, this is what their rainy day savings and attendance allowance are for.
Sadly, today is the best she will ever be.
With this is mind, it may also be worth while browsing the local care homes online and maybe putting her name down. If not needed right now, it is useful to have a couple in mind which might provide respite.
FIL needs to be realistic about where this is going.

Thank you all so much. It has been a very tough week for FIL, with MIL suffering repeated and pretty long-lasting delusions and confusion about where she is and who is there, and your advice and suggestions are much appreciated.

FIL is really not coping. He simply will not leave her alone in the house for even a moment, apart from when he had an appointment a couple of weeks ago and my DH went over. The nurse has confirmed we can be a support bubble under the current criteria which is wonderful and DH visits a couple of times a week, but FIL won’t go out or take a break even when he is there. I guess he also wants to see my DH but also at present he really has nowhere to go...the joys of lockdown! I might suggest he at least tries visiting the supermarket while DH is there.

We are going to see what kind of support in the home he might be able to access to attempt to give him a break. MIL is very resistant to the fortnightly nurse visit however, and I can’t imagine that she’ll be very keen on anyone else coming in.

I am so sorry your family are going through this. I have recently lost my Mum to dementia so I know how awful it is. You have been given lots of useful information on this thread - definitely call Adult Social Services and take it from there. One thing that stood out for me in your original post was that your MIL thinks your FIL has been replaced by an imposter - this is exactly what happened with Mum; she thought Dad had been replaced by an 'old man' and she was awful to him; very sad as they had been happily married since 1969. Anyway, she was diagnosed with something called 'Capgras Syndrome' where you think the person closest to you has been replaced by an imposter. It's quite rare and not many people have heard of it but have a read on the internet as it could be helpful in terms of working out treatment. Good luck with everything 💐

You need to understand that what MIL (and indeed FIL) needs out trumps what she wants. If you wait for someone with dementia to agree to anything, particularly outside help, you will wait forever.

A tip I read on here, when you get the paperwork through for the LPOA it's usually typed single-sided, make a little mark on the back of each page with a red pen.
If you need to show the documents to the bank, hospital etc, frequently they will ask if they can scan them and keep a copy for their records. If you mark with red pen on the back, just a small line or a single letter O, you will know if they're accidentally keeping the original document and giving you the scanned page back.