To think this dementia must be very advanced

[Pinkicingsugar]

We haven’t heard from the consultants for a while for my relative. Does anyone know what kind of stage dementia this will be?

Always wanting to leave the house and especially at night, very agitated and restless. We spent the day with her then she told someone 6 hours later that they hadn’t seen us for a very long time, so must have forgot she had been with us. She is saying she doesn’t have dementia and is swearing and shouting at us a lot. She is retelling us the same thing multiple times in a day, memories from her past and getting parts of memories mixed up

We feel as though we need more support but don’t know where to access it

She never stopped eating so didn’t follow the usual way of refusing food and fading

That’s my DM now, she put on two dress sizes as soon as she went into her nursing home. I couldn’t get her to eat at home, I tried everything, even if I sat with her with her favourite meal she’d get off and start wandering or suddenly change to being in a bad mood and start shouting at me. The anger and frustration is so hard at this stage.

Unfortunately not that advanced. Middle stages . It’s a long road. Each person is different, there are different types and subsets of each dementia, and symptoms can vary. My mum had a rare form of early onset frontotemporal dementia, please feel free to PM me if you want to talk about anything.

OP@Pinkicingsugar as she has a specific type of early onset dementia (there’s a number of sub types,sometimes can be known as Picks disease) it raises some different issues…you have a person who may be more physically robust (compared to the typical dementia patient)whilst their cognitive processes/ verbal abilities are often deteriorating ,this can be incredibly frustrating for the person living with this illness. Have you never been given any contact details for specialist nurse ? I would go back to your GP or contact the hospital team if you have a number. Please remember that often very simple things like UTIs, constipation, other infections, poor self care in terms of eating and drinking, can all worsen symptoms and can be easy to miss.

Ps. A average predicted survival after symptoms start, for fronto -temporal dementia is around 8-10 yrs…but it’s really important to try and have discussions early on around what that person may want to happen/ where they might want to be cared for in later years/ DNR etc. People with dementia have palliative care needs as time goes on but your relative isn't there yet, you will usually see problems with mobility, falls etc developing well before then.

I'd say this isn't particularly advanced. The whole getting day and night mixed up was actually our first sign of what was happening to my gran. She was 89 when it kicked in, and she lived until she was 96 so quite a long suffering time.
We kept her in her house though, got her carers coming in 3 times a day and us alternating between the family every day also. She occasionally went on respite stays to care homes too.
It was extremely hard, but we didn't want her going in to a home

Sorry if I'm repeating previous advice but regarding help see her GP or speak to social services

My relative was incontinent and couldn’t even get a drink for herself, let alone prepare any food when the OT told us she needed to be in a home. We had carers several times a day and one of her children went over every day and it still wasn’t enough. It is hard to step back and see how bad things are. I feel for you because somebody in their fifties is very young to be suffering this.

Feeling very sad today. I saw her this afternoon and she was talking to me about her family, and telling me things about her family, as if I didn’t know them or wasn’t part of the family

I'd agree with the others that isn't advanced. I've had experience of my gran, and more recently my mil.
My gran lived over 10 years after she was like that, 7 of them in a home.

It sounds like your dm is living independently.
Advanced there's no chance of that. My gran used to light the gas fire by switching the gas on in the lounge, rolling up a newspaper and lighting it from the hob in the kitchen. Then carrying it through. At any point she could forget what she was doing and she was also unsteady on her feet so could fall at any time. There were many times her neighbours were alerted by the smell of gas before went into a home. She was a risk to herself and her neighbours by then.

Everyone has different experiences of it so aside from the sundowning those things happened to my mum about 2 years after diagnosis and about 4-5 years after there was perceptible cognitive decline.

Stages of dementia is not really a formal thing in nhs because everyone with dementia really is an individual and it can progress and affect everyone differently. However I know it can help family to know the rough changes . To me it sounds like the start on middle stage.

As they have frontal dementia amd early onset look ar rare dementia support https://www.raredementiasupport.org/frontotemporal-dementia/
Are they under a dementia specialist neurology?
Also look at conteted dementia book?
And try and link in with your local dementia service , but be prepared for them not to fully get frontal dementia. Also contact social services for a care assessment.

It sounds like she is wanting to talk about past and family. Think about doing memory books and looking at reminiscence therapy activities.
Music Also really helps. I love this organisation https://www.playlistforlife.org.uk/

Oh and remember alot of the support is there for family as well. I'm sorry it was upsetting after the visit. Being able to chat through and off load is really helpful if you can

OP is she on any medication?

@FinallyFeb She isn’t unfortunately, they said they were not going to put her on any

Age U.K. might be helpful. Also speak to her GP re adult social care and support.

Sadly it doesn’t sound as if her dementia is very advanced and there is a realistic chance that she could live for several more years, continuing to deteriorate further.

Can you pursue this? My Dad is 90 and has it, he was offered medication, your mum is so young, I'm so sorry for you it's just awful xx

This type of dementia doesn't get treated with "normal" anti dementia type medication.

People with it are more likely to be prescribed antipsychotics and antidepressants if they'd help

MIL was diagnosed with a mix of frontal lobe, alzheimers and vascular in 2018. It was hard to get her to accept carers, but we had to get there... so put it to her as the carers were there to help us. That I was finding things hard, so we needed some help. She was more accepting after that.

She has carers 4 times a day now - since the start of 2020 - and we are having to think about the next stages as she is having mobility issues. It is tough. It progresses differently in everyone.

Ah I see, I stand corrected

It's not necessarily how advanced but how it is presenting.
Wandering at night and agitation are very difficult to manage and often at some point, especially if aggression, a person may need a specialised placement in an EMI bed.

If she’s going to the toilet a lot get her checked for a UTI - confusion and agitation can get a lot worse if she’s got one (we always know when mums got one bubbling up, she gets much more wooly headed - a couple of days on antibiotics and she’s more with it). https://www.alzheimers.org.uk/sites/default/files/2019-09/528LP%20UTIs%20and%20dementia.pdf

I was just going to say this too. Especially as you said she is going to the toilet more often. Can you go with her to a doctor's appointment? They will be able to suggest medication or perhaps refer you to adult mental health. We had visits from the mental health nurse and she was very helpful. There are medications that will keep her calmer and medications that might slow the advance of the disease. Antipsychotics are only prescribed in extremely bad cases

My mil was in this stage when we started caring for her. However she went down hill quite rapidly, she refused to go to Fils funeral, not that she remembered he'd passed. My DGS managed to convince her to leave the house, the last time we did this in her life.

We did have good times though, she had Chinese and tandoori chicken for the first time.

has she been tested for an UTI, they can cause real mental problems for both the elderly and those with dementia.

One thing that was really weird is that she remembered and recognised me, but not my relationship. I had to leave her ( qualified carer) for a while as I was needed to look after DH had an op. When I came back she said, you've been gone a long time

My Mil also had a carer come in twice a week for personal care, she was told that it was a nurse coming in and accepted that but refused a carer