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Does this mean anything different for us?

Cazcaz

Registered User
Apr 3, 2021
176
0
Hope someone can advise.

Mum was diagnosed in February. Dad was told, and told the family, that mum has Alzheimer’s disease.

Recently the hospital have sent a letter to mum’s gp which we were sent a copy of. This letter lists mum’s medical condition as “cerebrovascular disease and Alzheimer’s “.

Does the added “cerebrovascular disease” mean anything for mum. Either in terms of outlook/progression/treatment etc. Or is it just the ‘official term’ for Alzheimer’s, in which case why list both on her medical conditions?

I don’t know why dad wasn’t told about the other bit, just the Alzheimer’s, but that’s another question for another time.

Any information gratefully received. Thank you.
 

Izzy

Volunteer Moderator
Aug 31, 2003
65,492
0
70
Dundee
I had a look for the term and found this -


It says it covers many conditions including stroke. It might be that your other has signs of TIAs or stroke or vascular dementia. I would ask the GP if they could explain in more in your mum’s context.
 

Sarasa

Volunteer Host
Apr 13, 2018
3,945
0
Hi @Cazcaz, It is probably worth contacting them to ask for clarification but it sounds like your mother has signs of vascular dementia as well as Alzheimer's. These Factsheets might help explain more. My mother was diagnosed with vascular dementia in the first place. How it presents depends on which part of the brain is affected. In mum's case her memory was fine for many years it was just that as my husband said her logic boxes got fried. The main difference is that it tends to go in steps. So there can be a sudden down turn followed by a plateau or even some signs of improvement until the next incident. Although by the time she was diagnosed her dementia was very advanced I think my mother in law also had vascular dementia. She had sudden declines, and then seemed to improve as her brain worked out ways to bypass any damage.
I'm not sure how much difference it will make to any treatment offered.
 

canary

Registered User
Feb 25, 2014
16,170
0
South coast
It sounds like your mum has an element of vascular dementia in addition to the Alzheimers. Its not uncommon for the precise diagnosis to change a bit during the progression. It wont actually change anything as there is no treatment for vascular dementia in the same way that there is for Alzheimers.
 

Cazcaz

Registered User
Apr 3, 2021
176
0
Thank you everyone for your help. As always people on here far more helpful and informative than anywhere else. We will contact mum’s gp next then.

@Sarasa mum’s “logic boxes” are well “fried”, her immediate memory is almost non existent but she can occasionally remember things from last week/earlier this year????

@canary thank you, I didn’t realise diagnosis might change, but of course it makes sense when you think about it. Does this class mum as “mixed dementia “ which I’ve seen mentioned?
 

imthedaughter

Registered User
Apr 3, 2019
693
0
Yes my dad has mixed dementia - the dr explained to me that his scan showed brain shrinkage which they think is Alzheimer's dementia but he also had several areas with clots indicating damage from stroke or other brain injuries, so was also diagnosed with vascular dementia, or mixed dementia as a sort of shorthand. No treatment for the vascular dementia. In terms of what it means to you, if you read the factsheets Canary linked to you'll see vascular dementia has a shorter prognosis as once you've had one stroke it's likely you'll have another and there's a higher incidence of morbidity - obviously some people will just go on for years but some will die suddenly. Not nice but good to be aware of.
 

lollyc

Registered User
Sep 9, 2020
603
0
Mu m has an "unspecified" dementia, which I take to be , "we have no idea why she has it." No brain shrinkage on scans, and no diagnostic changes in her brain. I'm not sure that it ultimately makes much difference, as we had no follow up support anyway!
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,252
0
High Peak
I sometimes think the medical profession see a diagnosis of dementia in a completely diferent way to the rest of us. We see a difficult future and hope to make 'living with dementia' positive for our loved ones, as far as we can. The medics seem to see it as 'Terminal, so no point in bothering with anything further. This person will get worse and then they will die.'

I'd say my mother was written off. Actually I'd say she was never written in! She was undiagnosed, had a fall then hospital for a couple of months, then I moved her to a care home. She was diagnosed by a consultant about 6 months later. He had seen her hospital scan then visited mum for an hour (so he said) then phoned me. His diagnosis was initially vascular dementia but after talking to me about mum's increasing struggles over the past 5+ years, he changed that to mixed dementia (Alz + VD.)

Mum was actually very well physically when she went into the CH, though cognitively was completely loopy most of the time. But she could still do a good hostess mode. No medic showed the slightest interest in her dementia from that point. No one asked me how she was, no meds given. A GP visited once a year to visit all residents of the care home and his comment was, 'She's getting worse, isn't she?' He was actually really nice to me, which I appreciated, but basically I was left to watch mum die, which indeed she did, 3 years later.

Maybe it's time for a bit more honesty and a diagnosis of dementia should be followed by a statement of, 'Yes, it's awful and I'm sorry...but there's nothing we can do.'
 

kindred

Registered User
Apr 8, 2018
2,774
0
I sometimes think the medical profession see a diagnosis of dementia in a completely diferent way to the rest of us. We see a difficult future and hope to make 'living with dementia' positive for our loved ones, as far as we can. The medics seem to see it as 'Terminal, so no point in bothering with anything further. This person will get worse and then they will die.'

I'd say my mother was written off. Actually I'd say she was never written in! She was undiagnosed, had a fall then hospital for a couple of months, then I moved her to a care home. She was diagnosed by a consultant about 6 months later. He had seen her hospital scan then visited mum for an hour (so he said) then phoned me. His diagnosis was initially vascular dementia but after talking to me about mum's increasing struggles over the past 5+ years, he changed that to mixed dementia (Alz + VD.)

Mum was actually very well physically when she went into the CH, though cognitively was completely loopy most of the time. But she could still do a good hostess mode. No medic showed the slightest interest in her dementia from that point. No one asked me how she was, no meds given. A GP visited once a year to visit all residents of the care home and his comment was, 'She's getting worse, isn't she?' He was actually really nice to me, which I appreciated, but basically I was left to watch mum die, which indeed she did, 3 years later.

Maybe it's time for a bit more honesty and a diagnosis of dementia should be followed by a statement of, 'Yes, it's awful and I'm sorry...but there's nothing we can do.'
Absolutely Jaded. So agree. The doctor said to us you have Alzheimer’s and it will get worse and that was it. End of.
In those few words, keith became a person no longer of interest.
God it hurt,
 

Violet Jane

Registered User
Aug 23, 2021
419
0
I think that the problem is that there is no treatment to cure dementia and very little treatment to slow the progress of dementia. However, there is quite a lot that can be done medically to help with symptoms such as agitation, anxiety and aggression which make the lives of both the PWD and his/her carers (both family and professional) very difficult and, from what I’ve read on many threads, the medical profession could be a lot more proactive and responsive in this respect.

I think that doctors feel helpless in the face of a dementia diagnosis, knowing that there is so little effective treatment. By contrast, there has been been progress, sometimes incredible progress, in treating and curing other diseases which were a death sentence not so long ago.
 

lollyc

Registered User
Sep 9, 2020
603
0
I think that the problem is that there is no treatment to cure dementia and very little treatment to slow the progress of dementia. However, there is quite a lot that can be done medically to help with symptoms such as agitation, anxiety and aggression which make the lives of both the PWD and his/her carers (both family and professional) very difficult and, from what I’ve read on many threads, the medical profession could be a lot more proactive and responsive in this respect.

I think that doctors feel helpless in the face of a dementia diagnosis, knowing that there is so little effective treatment. By contrast, there has been been progress, sometimes incredible progress, in treating and curing other diseases which were a death sentence not so long ago.
I accept that there is no treatment or cure for dementia. What I find more difficult to accept is being cast adrift to get on with it, without any support.

For a long time I felt such a failure as a carer - if the medical profession felt that nothing needed to be done, why wasn't I coping? Was I the only one who wasn't managing? I didn't find this forum for 4 years, and it was a revelation that I wasn't failing, I was just the same as the vast majority of carers: blundering around in the dark most of the time.

Anti-depressants etc., have helped managed Mum's symptoms enormously, but I only got these because I was reaching the end of my tether and spoke to her GP. Why wasn't I told from the off that there were drugs that could manage the challenging behaviours? Like everything else with dementia, the onus is on the carer to seek out help, usually when the situation is desperate. Proactive care would make a tremendous difference to lives of carer and PWD.
 

Violet Jane

Registered User
Aug 23, 2021
419
0
Lollyc, I completely agree with you about the medical profession’s lack of interest in managing the symptoms of dementia, many of which make the lives of people with dementia and their carers more difficult than they would otherwise be if timely help were offered. What happens after a diagnosis seems to vary a lot from place to place with some people having virtually no scheduled follow-up which means that the carer has to ask for everything. As you say, carers often don’t know that there is medication that can help with challenging symptoms. Instead, they can feel that difficult behaviour is part and parcel of dementia and they just have to put up with it.

Whilst research into prevention and treatment of dementia is obviously very important there is a lot that the medical profession can do now to offer advice about managing distressing symptoms which doesn’t require much money and perhaps there needs to be a campaign to educate doctors about best practice in the management of dementia and support for carers.
 

canary

Registered User
Feb 25, 2014
16,170
0
South coast
I frequently think that the lack of support is due to the way problems that people with dementia have are considered social care problems, not medical. This means that the doctors dont feel they can help much past diagnosis and social care is so chronically underfunded that they can really only respond to emergencies now.
 

Violet Jane

Registered User
Aug 23, 2021
419
0
Agreed, canary, but there is actually quite a lot that can and should be done medically for a PWD in many cases. Many, many people benefit from medication to manage difficult behaviours but carers often have to push for this when they are reaching breaking point. Doctors aren’t reviewing their patients and offering it.
 

Thethirdmrsc

Registered User
Apr 4, 2018
515
0
Agree with all of this, and I feel there is such a stigma with having Alzheimer’s, especially since it is lumped in with mental health. It’s such an uphill battle all the time.
 

Violet Jane

Registered User
Aug 23, 2021
419
0
Do people think that friends drift away from people with dementia more than they do from people with other long term illnesses?
 

canary

Registered User
Feb 25, 2014
16,170
0
South coast
Agreed, canary, but there is actually quite a lot that can and should be done medically for a PWD in many cases. Many, many people benefit from medication to manage difficult behaviours but carers often have to push for this when they are reaching breaking point. Doctors aren’t reviewing their patients and offering it.
Yes, I agree, but it seems to me that no-one wants to look at this middle ground that is neither diagnosis, nor emergency.
Do people think that friends drift away from people with dementia more than they do from people with other long term illnesses?
Yes, I do, though I can understand why. We as relatives feel like the person with dementia is slipping away from us and it is heart-breaking. How much easier it must be for someone who is only a friend to avoid them.
 

MartinWL

Registered User
Jun 12, 2020
1,300
0
Do people think that friends drift away from people with dementia more than they do from people with other long term illnesses?
Yes certainly. People don't know how to deal with a PWD. They find conversation difficult and sometimes trying, when the same thing is repeated. Sometimes also you have to tread on eggshells to avoid contention. So friends may drift away.