Vascular dementia - is it, or isn't it?

[jenniferpa]

My Mother, now 89, suffered 2 strokes in rapid succession (within 12 hours) last year and now has anterograde amnesia. Actually, according to the scans she had had at least one stroke prior to this event. This was probably about 3 years ago, which is when I first noticed the memory problems. I raised this memory issue with her then GP, and was told it was a normal part of aging, which I do not now believe. Even if it was, I feel very strongly that the GP was at fault for not making us aware of the possible problems of memory loss, specifically, that procedures should be put in place to ensure my DM took her hypertension medication. As it happens, that was one of the things she forgot, as I discovered when I cleaned her house while she was in hospital - masses of unused meds. Unsurprising, then, that she had the second and thrid stroke.

Anyway, I have never been informed that she has vascular dementia, but I assume that what she has comes under this classification. The one thing I was wondering is: is further decline inevitable? What if she never has another stroke? She is now properly medicated including anti-coagulants (she was taken off these several years ago by the aforementioned GP following a bout of anemia, and they were never re-instated). She is now living in an extra-care facility, so her carers giver her her meds, all her food is provided, and her cleaning and laundry are also done for her. Apart from the hypertension, she also has atrial fibrilation (sp?), cataracts, hemianopsia (half vision due to the stroke) and arthritis, but apart from all those things, she's in quite good health (looking at that list makes it seem unlikely, but you know what I mean). Medically, she's now being monitored very closely, so from that stand point, I really wonder how likely another stroke is.

I have always thought of dementia as a progressive illness, and while she has good and bad days, she is no worse than the day she came out of hospital.

Jennifer

 

[Amy]

Hiya Jennifer,
AsI understand it vascular dementia follows a stepped progression, so there can be long periods where there is no obvious change, so hopefully your mum is on a plateau and will remain there!! This should be aided by her taking the right medications, though I don't think they can rule out any more strokes occurring.
Sorry, forgot to welcome you to TP!
Helen

 

[Kayla]

Is it or isn't it?

Dear Jennifer,
I think GPs deliberately keep things from us. When Mum first began to act strangely, I asked if her symptoms were due to a very mild stroke, as my father had suffered a stroke and there were similarities. The GP said definitely not, but really he was wrong. It would have been much easier to cope in the beginning if we had been told the truth. The hospital didn't give much information and it is only since Mum has been in her NH that I have understood and learnt more about vascular dementia. In fact, it has only happened because I asked questions and the matron explained Mum's condition to me. There is no other illness where it is so hard to find anything out. No wonder so many people make insensitive remarks about dementia sufferers! The secrecy surrounding all types of dementia makes it more difficult for everyone.

 

[Lila13]

My mother saw so many doctors who told us it wasn't dementia at all. Of course they just don't have enough time for each patient. She could put on a very good act for them.

We never had a proper diagnosis, I don't even know what happened at the second memory clinic (my mother and brother only told me a little bit about it), unless a prescription for Aricept counts as a diagnosis, and then "dementia" on the death certificate.

Lila

 

[jenniferpa]

I think there should be a condition called traumatic vascular dementia - that would accurately describe my DM's condition. The clots caused the strokes, that cut off oxygen to the brain, that caused the dementia. Whatever it's called it is what it is. I suppose I'm just trying to get a handle on what to expect the next few years, particularly as I need to arrange her finances to ensure that she has sufficient money to pay for her care. Obviously, if she deteriorates a lot, she'll need to move from her extra care suite to the nursing home to which it is attached, and I know how much those fees are, but it's the between bit I'm concerned about - how much extra care is she going to need while she stays where she is.

I should perhaps explain that the care is provided by the nursing home, not social services. In fact, we have had no contact with social services - should I perhaps remedy this?

I also need to get a referral for her to a local memory clinic, I assume I do this through her doctor? I like him, he comes to her suite when she needs anything, but he's not as proactive as I would like.

To further complicate matters, I'm not even in the country (I live in the USA). I'm coming back over every 3 months or so, so I want to arrange appointments so that I can be there (her domicillary care manager is great, and would go with her, but I need that little bit of control).

Jennifer

 

[Kayla]

Fees

Dear Jennifer,
I'm afraid if your mother owned even a very modest house and has some savings, she is unlikely to qualify for any financial help. You can apply for attendence allowance at the higher rate and for a contribution towards nursing care if she needs it. It does seem rather unfair that people who have worked hard all their lives are entitled to so little help. It is much easier to do things yourself than hang around waiting for the social services to do something.
Kayla

 

[jenniferpa]

I wan't expecting a financial contribution, I was just wondering whether one should at least have some contact with the system. When Mummy came out of hospital after her strokes, I ended up arranging for private care, because I couldn't get a satisfactory
anything out of social services in the area in which she lived until 2 weeks after she was out of the hospital and I had to get back home before that 2 weeks was up. She has since moved, as I said, to an extra care suite attached to a nursing home, so they provide her ongoing care. She has the highest level of AA. The one thing that I really think she should be entitled to is a rebate on her council tax based on serious mental impairment, but her doctor decided that her impairment wasn't sufficiently serious. This seems very much in the hands of the doctor in question - the council told me that if the AA was awarded on the basis of mental impairment (which it was) that would mean she was probably entitled, but the certificate must be forthcoming from the doctor, and he won't sign it.

Jennifer

 

[Lila13]

I think you should inform Social Services, but as you've already arranged everything and have a care manager I doubt if SS will do anything.

It is horribly confusing, being so different in different areas.

Lila

 

[Kayla]

Council Tax

Dear Jennifer,
When some one moves into a residential or nursing home they are exempt from council tax. All you need to do is write to the local council and inform them of where your mother has been living. They might also send you a form to fill in. Kent are not the most generous of authorities, but the council tax rebate seemed to be one of the easiest things to organise. If your mother's house is rented out in the future, then the tennants are liable for the council tax. It amounts to quite a lot of money over the year, especially in the South East.
Kayla

 

[jenniferpa]

I'm afraid I didn't explain myself properly. My mother owns and lives in a leasehold extra care suite/flat (1 bedroom) that is attached to a nursing home. As a property owner/occupier, she has to pay council tax. There's a 25% rebate for living on her own, but there is also this option of getting the entire tax rebated in the event of serious mental impairment. This has to be cerified by a GP.

This sort of thing is also called very sheltered housing, I believe. The pertinent thing is that it's separate accomodation, and therefore has it's own council tax charge (Band A). My problem has been getting the GP to see that she has a serious mental impairment for the purposes of the rebate, and I have not found anything that I can use to persuade him.

I was wondering if a memory clinic would be more or less inclined to support this, quite apart from the fact I think they might have a better idea of anything that could be done to help her mental state. What do you think?

Jennifer

Dear Jennifer,
When some one moves into a residential or nursing home they are exempt from council tax. All you need to do is write to the local council and inform them of where your mother has been living. They might also send you a form to fill in. Kent are not the most generous of authorities, but the council tax rebate seemed to be one of the easiest things to organise. If your mother's house is rented out in the future, then the tennants are liable for the council tax. It amounts to quite a lot of money over the year, especially in the South East.
Kayla

 

[Kayla]

Is it or isn't it?

Dear Jennifer,
I've not heard of very sheltered housing which is actually owned before. The only sheltered housing in my area is council owned, and only for people of limited means, not people with social needs.
Sometimes GP's are not very experienced with mental health issues, as they all have their own specialities. Perhaps if the GP isn't helpful and the doctor at the memory clinic won't sign the form, it might almost be worth getting a private certificate. It depends how much the council tax is. Would the matron at the nursing home advise you?
It's amazing how much different areas vary in the way they do things. It makes life very complicated for people. Sorry I misunderstood what you meant.
Kayla