Memory Clinic expectations after diagnosis

Heather 27

Registered User
Aug 7, 2022
26
0
My stepmum was diagnosed with 2 variations of dementia but I'm unsure what to expect ongoing from the diagnosis from the memory clinic. She has been prescribed memory tablets and has been invited to attend the wellbeing group once weekly (with my dad if she prefers) but she hated it when I took her so refuses to go. I've been told the clinic will see her in 12 months but my personal feeling is that this can be a long time in the dementia stakes. Since diagnosis she has had a fall and a TIA and been hospitalised for a couple of weeks. When I last rang the clinic to ask for guidance I was told not to be negative and to celebrate what she CAN do and to see the glass as half full, not half empty. I am a realist, and try to put things in place to make things easier for my dad (he is 90 and they both live at home, and he is her main carer) but I need to know they are on the case and I also need to know how to plan ahead. I realise carers and care homes cannot be put in place overnight. Any ideas, please? My dad, bless him, thinks that, if he looks after her well, she will get better. I try to have open and honest discussions with him and he realises deep down what is happening, but he sees it as his duty to care for her.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,445
0
Kent
When I last rang the clinic to ask for guidance I was told not to be negative and to celebrate what she CAN do and to see the glass as half full, not half empty.

That is bad @Heather27. There is never anything wrong in asking for help. We are not specialists, we are amateurs trying to do the work of a specialist and deserve better respect.
he sees it as his duty to care for her.

Of course he does. He is a loving husband. However, there is nothing wrong in asking for help. If your dad had some help it would give him more strength and energy to care for your step mum in the best way possible.

Being a primary carer is exhausting and a little help along the way can work wonders. Perhaps your dad could get agency carers to help with housework and form a relationship with your step mum to help get her used to other people in the house. It's what I did and worked out well.
 

Louise7

Volunteer Host
Mar 25, 2016
4,689
0
Hello @Heather 27 welcome to TP. Unfortunately it's common to just be left to get on with it without any real support after an initial diagnosis, and memory clinics tend to sign people off quickly, with little in the way of follow up action. It's good that you're thinking ahead to help your dad and step mum as putting things in place now will help going forward. You'll find lots of support and advice here, so keep posting. You may find the following helpful too:

This guide covers planning ahead, including getting power of attorney in place if this hasn't been done already. It also provides details of help that may be available and benefits that your step mum may be entitled to:

Caring-for-a-person-with-dementia-a-practical-guide.pdf

This fact sheet explains the local authority care needs assessment and carers assessment processes which may help in getting some support for both your dad and your step mum:

https://www.alzheimers.org.uk/get-support/legal-financial/dementia-care-needs-assessment
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,415
0
Newcastle
Hi @Heather 27 and welcome to Dementia Talking Point. You will find us a friendly and supportive community. I am sorry to hear about your situation.

Unfortunately, like me, many members have found that memory clinics do little to nothing once a diagnosis is made.

Dementia takes away so much of the person. Bit by inevitable bit. Looking on the bright side, the glass half-full and living well with dementia are fine sounding words. But they are difficult to achieve for anyone affected - the person with dementia, their family and carers.

So far, so depressing. What this community can offer you is a safe space to express your feelings, ask questions and get helpful suggestions from people who know what living with dementia really means.

I hope that you benefit from the support of our members, as much as I have since first coming here more than 5 years ago.
 
Last edited:

Jaded'n'faded

Registered User
Jan 23, 2019
5,259
0
High Peak
The person who told you not to be negative was extremely unhelpful! (Especially when you phoned for advice.)

Sure - look on the bright side, dementia's not that bad! Actually it is. Very bad. In fact I can't think of anything good about it, not one thing.

But this forum is really good! Ask your questions here - there's always help and support...
 

JaxG

Registered User
May 15, 2021
787
0
Just when I thought I had heard it all and could no longer be shocked - you are told to 'Look on the bright side' - REALLY!! As @Jaded'n'faded pointed out, there is no bright side to this disease - for the sufferer or their carers. But Talking Point is a real life saver and I know you will get the support and understanding you need on this site.
 

Raest

Registered User
Jan 15, 2022
44
0
We have a care coordinator from our GP service who checks in with me once a month which makes me feel like there is someone there on a regular basis so could you try that. There is also a dementia helpline on here that may be able to assist. Telling you they will see you in 12 months is not good enough.
 

jennifer1967

Registered User
Mar 15, 2020
23,135
0
Southampton
we had the test, they consulted the consultant and phoned me and told me so i had to give the diagnosis to my husband. we had a dementia navigator contact us but then first lock down and he was shielding so just telephone contact.
 

AbbyGee

Registered User
Nov 26, 2018
746
0
Portsmouth, South Coast
It's a Post Code Lottery, isn't it? Whilst I may have very negative feelings towards some of the local authority 'help' available I can't really knock the rather unfortunately named NHS Memory Clinic in this city.
In Portsmouth, Hampshire, we have the lowest ratio of GPs per head of population in the country. GPs aren't set up to deal with dementia so I expect very little from them for this condition and prefer to leave it to those who are the specialists.
Having said this, they can only deal with the symptoms, not the life any of us lead.
 

RosettaT

Registered User
Sep 9, 2018
866
0
Mid Lincs
It certainly is a postcode lottery. My OH saw the memory team in the September and again in the March. He was then discharged and told to go back to the Dr if there were any problems with his dementia meds as it's them who prescribe them. As for anything else to do with dementia there was a MHN at the surgery but she was never around and didn't even have her own contact number, it was always. 'when she's in we'll ask her to ring you'. We saw her once in 4yrs. Fortunately our Dr took a big interest in OH and was always helpful.
 

Heather 27

Registered User
Aug 7, 2022
26
0
Hi @Heather 27 and welcome to Dementia Talking Point. You will find us a friendly and supportive community. I am sorry to hear about your situation.

Unfortunately, like me, many members have found that memory clinics do little to nothing once a diagnosis is made.

Dementia takes away so much of the person. Bit by inevitable bit. Looking on the bright side, the glass half-full and living well with dementia are fine sounding words. But they are difficult to achieve for anyone affected - the person with dementia, their family and carers.

So far, so depressing. What this community can offer you is a safe space to express your feelings, ask questions and get helpful suggestions from people who know what living with dementia really means.

I hope that you benefit from the support of our members, as much as I have since first coming here more than 5 years ago.
Thank you for your lovely words. As a teacher of some 30 + years I am trained to see the positive not the negative. When I retire I've made a promise to myself to do more to help folk in my position. I don't know how, but I will.
 

Heather 27

Registered User
Aug 7, 2022
26
0
The person who told you not to be negative was extremely unhelpful! (Especially when you phoned for advice.)

Sure - look on the bright side, dementia's not that bad! Actually it is. Very bad. In fact I can't think of anything good about it, not one thing.

But this forum is really good! Ask your questions here - there's always help and support...
Thank you so much for your support.
 

Heather 27

Registered User
Aug 7, 2022
26
0
Just when I thought I had heard it all and could no longer be shocked - you are told to 'Look on the bright side' - REALLY!! As @Jaded'n'faded pointed out, there is no bright side to this disease - for the sufferer or their carers. But Talking Point is a real life saver and I know you will get the support and understanding you need on this site.
Thank you for your reply. I'm so glad I've joined you all.
 

Heather 27

Registered User
Aug 7, 2022
26
0
That is bad @Heather27. There is never anything wrong in asking for help. We are not specialists, we are amateurs trying to do the work of a specialist and deserve better respect.


Of course he does. He is a loving husband. However, there is nothing wrong in asking for help. If your dad had some help it would give him more strength and energy to care for your step mum in the best way possible.

Being a primary carer is exhausting and a little help along the way can work wonders. Perhaps your dad could get agency carers to help with housework and form a relationship with your step mum to help get her used to other people in the house. It's what I did and worked out well.
Many thanks for your reply. I certainly will be exploring more avenues as time goes by. I noticed her asking what time of day it was yesterday, and asking me at least 4 times in 10 minutes what the parcel was on her lap (It was a birthday gift she'd opened from a friend).
 

yorkie46

Registered User
Jan 28, 2014
413
0
Southampton
Hi @Heather 27 , I was left in exactly same position when my husband was diagnosed with frontal lobe dementia. There was absolutely nothing on offer for him. I would suggest contacting the Admiral Nurse service as a first step. As someone else suggested Dementia Navigators are very helpful, your GP should be able to help with both these. They should be able to support your Dad and you and in that way help your step mum. I hope you can get some help soon but I'm afraid it won't come looking for you! Good luck!
 

extoyboy

Registered User
Oct 2, 2021
64
0
The specialist we saw at our local memory clinic was very helpful but like most other people on here once the diagnosis/meds had been sorted it was pretty much back in the hands of the GP. We were told that there'd be a follow-up with the memory clinic after 12 months and we should ask the GP to refer us back if anything changed significantly in the meantime.

I'd suggest getting the ball rolling with regard to seeing what help is out there - ask for a care assessment and a carers assessment and apply for a council tax reduction too. The first two might come to nothing if your dad and stepmum have enough in the bank but the council tax reduction (same as single person discount) isn't means tested.
 

Firecatcher

Registered User
Jan 6, 2020
577
0
My Mum got no follow up from the memory clinic following diagnosis. Aid certainly consider making a formal written complaint about the person who told you to look on the bright side. It won’t help you but it might stop them making the same crass insensitive remarks to others. Some NHS staff are more than stupid.
 

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