Vascular dementia diagnosis

[Forgetmeknot]

My 90 year old mum has just been diagnosed with vascular dementia. We are waiting for the post diagnosis support meeting which I understand will be in the next few weeks. I am hoping that will help us cope and give ideas. My dad had Lewy Bodies but also heart problems and died from a heart attack before the dementia got too bad.
My mum has days when she doesn't think there is anything wrong with her and days when she struggles with simple things and gets very confused which I know is what happens but I am finding it all quite overwhelming.
Any tips gratefully received.

 

[Haziebear]

Welcome to talking point. I suggest you join tide and register with your local carer centre. You can also have a carer assessment to help you out. Take any help offered, you will need it as your journey progresses.

 

[Izzy]

Welcome to the forum @Forgetmeknot. @Haziebear mention TIDE. I thought I would just add the link here -

Together in dementia everyday. When no one else was here for me, tide were beside me

dementia charity for carers in the UK campaigning and influencing dementia support policy services

www.tide.uk.net

 

[Forgetmeknot]

Thank you I will have a look at that. How do you find the time to do everything? Trying to look after mum, husband, grandchildren and hold down a full time job is just exhausting!

 

[Izzy]

Thank you I will have a look at that. How do you find the time to do everything? Trying to look after mum, husband, grandchildren and hold down a full time job is just exhausting!

It‘s not easy. Please seek out all the support you can. I’m no longer a carer as my husband died almost 5 years ago. I do remember what it was like though. I was working full time and had both my mum and husband at home with dementia. I accepted the fact that I needed carers to help with them otherwise I would have gone under.

You might find this page useful -

Your local dementia support services

We are here to help. Find out more about the type of dementia support services available in your area.

www.alzheimers.org.uk

I’m glad you found this forum and I know you’ll find help and support here. Keep posting.

 

[Forgetmeknot]

Thank you Izzy, that's really helpful.

It was difficult with my dad but I was just helping out, my mum was his main carer. This time it is just me and I know I can do it, it's just overwhelming at the moment and it just seems so unfair. Such a horrible illness which doesn't get the recognition it deserves.

Anyway, onwards and upwards

 

[jennifer1967]

take it step by step and just live in the moment. let the future sort itself out as there is no value in thinking of the future as you dont know what it will bring.

 

[Forgetmeknot]

Thank you Jennifer - good advice indeed

 

[WIB]

I'm so glad I found this forum as I'm in almost the same situation, with my Mum (nearly 91) diagnosed this week with vascular dementia. As she was recently in hospital and currently has short-term intermediate care in place, everything seems like a whirlwind at the moment - I haven't even told Mum about the diagnosis yet as she will be confused and scared so am waiting the first visit from the Dementia Crisis team to help me explain to her and (I hope) persuade her to take the medication that the gp has been asked to prescribe. It does help to know there are other people out there struggling with similar circumstances.

 

[nae sporran]

Welcome to the forums @WIB. My partner is just out of hospital, so I feel for you and the problems you will face in coming days. You don't have to tell your mum she has vascular dementia, C finds it easier if I put everything down to her stroke.
Good luck with the crisis team visit.

 

[Sarasa]

My mother was also ninety one when she received a diagnosis of vascular dementia. Mum was in complete denial that she had any problems, so we didn't try explaining it to her. Instead we just put things in place to support her, which in mum's case was a move to a care home. By that time she'd been struggling with various things for about three or four years, but because her memory wasn't at all bad I hadn't actually twigged it was dementia until she started doing some very strange things and putting herself at risk.
As @nae sporran says find an explanation she will accept. Mum's GP tried to explain that just like her joints were getting painful because of her age her brain was also wearing out. It was a good analogy, but not one she accepted.

 

[Felixcat1]

My 90 year old mum has just been diagnosed with vascular dementia. We are waiting for the post diagnosis support meeting which I understand will be in the next few weeks. I am hoping that will help us cope and give ideas. My dad had Lewy Bodies but also heart problems and died from a heart attack before the dementia got too bad.
My mum has days when she doesn't think there is anything wrong with her and days when she struggles with simple things and gets very confused which I know is what happens but I am finding it all quite overwhelming.
Any tips gratefully received.

There was no post diagnosis support offered to my dad when he was diagnosed in June ( though I suspect he has it for at least five years.) The consultant just referred him back to his GP because there isn’t any medication he can have due to the medication that he is already on. I was expecting his GP to follow this up but nothing. Dad has refused to have careers or any other form of help or support. My dad is very much like your mum, he has good days and then awful days and after a very short stay at my sisters he has rapidly deteriorated. I hope that you are able to have a follow up support meeting more for yourself. I’d be interested to know how it goes and what kind of support is offered xx

 

[Violet Jane]

The support following diagnosis seems to be so variable and I think that it is something to do with the fact that it's often social care support that needs to be put in place, which is not something that GPs (are able to) deal with. I can't remember my mother having any input from the GP until much later when she prescribed (possibly inappropriately) anti-depressants. My elderly friend was diagnosed with AD in May 2020 and a short time after that she had an infection and Delirium and was admitted to hospital. This triggered the involvement of a social worker who put a reablement package in place (fairly standard for frail, elderly people who live alone) and persuaded my friend to accept carer visits twice a day when reablement ended. Without the hospital visit I don't know what would have happened. Possibly nothing.

 

[jennifer1967]

There was no post diagnosis support offered to my dad when he was diagnosed in June ( though I suspect he has it for at least five years.) The consultant just referred him back to his GP because there isn’t any medication he can have due to the medication that he is already on. I was expecting his GP to follow this up but nothing. Dad has refused to have careers or any other form of help or support. My dad is very much like your mum, he has good days and then awful days and after a very short stay at my sisters he has rapidly deteriorated. I hope that you are able to have a follow up support meeting more for yourself. I’d be interested to know how it goes and what kind of support is offered xx

my husband has vascular dementia and never had any more contact with memory clinic. a dementia navigator from alz. soc. got in contact and she has been really brilliant as she knew who to go to for what. she was a human encyclopedia of all the services and referrals. he wasnt put on anything as theres nothing for vascular but subsequently was put on sertraline for his mood and memantine for the aggression from older peoples mental health referred by the gp.

 

[jennifer1967]

The support following diagnosis seems to be so variable and I think that it is something to do with the fact that it's often social care support that needs to be put in place, which is not something that GPs (are able to) deal with. I can't remember my mother having any input from the GP until much later when she prescribed (possibly inappropriately) anti-depressants. My elderly friend was diagnosed with AD in May 2020 and a short time after that she had an infection and Delirium and was admitted to hospital. This triggered the involvement of a social worker who put a reablement package in place (fairly standard for frail, elderly people who live alone) and persuaded my friend to accept carer visits twice a day when reablement ended. Without the hospital visit I don't know what would have happened. Possibly nothing.

it depends as well on which dementia is diagnosed. if its vascular, theres no tablets for that type of dementia but only tablets to treat the symptoms. the gp can refer to other agencies and social services who then can do a care assessment and carer assessment. dementia navigator can tell you all you need to know.

 

[Violet Jane]

I’ve never come across a dementia navigator. Do they work for Social Services?

As with many conditions, some GPs will be more knowledgeable / interested than others.

My mother had AD and was on Aricept (Donapazil) but the GP never saw her. My friend has AD but was not prescribed anything because the psychologist at the Memory Clinic concluded that she would forget to take any medication prescribed! She did not seem to consider that carers could visit to prompt my friend to take medication. I have followed this up but nothing has happened.

 

[jennifer1967]

I’ve never come across a dementia navigator. Do they work for Social Services?

As with many conditions, some GPs will be more knowledgeable / interested than others.

My mother had AD and was on Aricept (Donapazil) but the GP never saw her. My friend has AD but was not prescribed anything because the psychologist at the Memory Clinic concluded that she would forget to take any medication prescribed! She did not seem to consider that carers could visit to prompt my friend to take medication. I have followed this up but nothing has happened.

dementia navigator ,mine any way, works for alzheimers society and supports both the pwd and the partner. not ss. on this website, theres a place to put your postcode in and all the things in your area come up. they are not in all areas but you could check. they are worth their weight in gold especially as my husband was diagnosed just before lockdown and was shielding

 

[Violet Jane]

Thank you for this, Jennifer.

 

[Shedrech]

hi @Violet Jane
here's the link to the directory of services

Find support near you

Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.

www.alzheimers.org.uk

 

[Violet Jane]

Thank you.