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Recent diagnosis, but at the severe stage.

Under_the_radar

New member
Jan 28, 2021
6
0
South Bucks
Hello everyone, hopefully I'm in the right section, this is my first post so sorry if I'm not!
A family member of Mine, whom I live with, has recently been diagnosed with mixed dementia which includes; severe vascular dementia, more than likely Alzheimer's and Alcohol related brain damage which they think could of happened years ago (he stopped drinking 6 years ago).

We knew something was wrong for a while but as he also had very frequent UTI's our local doctors surgery was less than helpful with helping us get a diagnosis. So now we face a recent diagnosis of "severe vascular dementia" but a lot of the advice and reading out there is related to early stages in regards to what to do when you first get a diagnosis. So I'm here seeking a little bit of help as I feel like I'm drowning in mixed information researching online. I hope someone out there can offer me some advice or even share there own personal experiences if you or someone you care for has been in a similar situation.

Firstly I wanted to clarify, no one has actually explained the stages of dementia to us so it has all been things I've read online from multiple sources but some times its hard to get a clear answer, when a doctor gives a diagnosis of "severe" does that mean we are looking at stage 6?

Secondly, if I am on the right wave length with how stages work, does anyone have any information, links, pages, booklets, anything at all regarding getting a diagnosis whilst being in the realm of severe rather than early stages? Unfortunately a lot of the reading is of the assumption the person is still in a position to live their normal day to day lives but unfortunately we aren't in that situation any more as he is less mobile, less aware and is unable to do a lot of the things recommended by the booklets when it comes to first being diagnosed. This is also magnified by the mixed dementia, ARBD and possible physical frailty as we aren't sure what is being caused by what ailment.

At the moment we just don't know where we stand. We don't know how long, we don't know where we are, and to be honest the more answers we get from doctors the more questions are raised. We know the mixed dementia and ARBD makes the situation harder to navigate but we've just been sort of left to figure it out on our own and its so daunting and confusing.

Sorry for the long first post but its just been floating in my brain for so long now I have so many questions. I have more but I will post them separately so they are topic relevant.

Thank you all in advance x
 

jennifer1967

Registered User
Mar 15, 2020
12,747
0
Southampton
my husband only has vascular dementia. if you look on the website to resources they produce a booklet about all different dementias and vascular is one of them. im no good with links someone else may come along and give you the link . if you look at list of forums and carry on down, theres a list. not sure if that helps.
 

silkiest

Registered User
Feb 9, 2017
674
0
Hi @THarris,
I don't think it really matters what stage someone is diagnosed at as everyone progresses differently. That is probably why the doctors answers can give you more questions than answers. My MIL was diagnosed nearly 5 years ago with Alzheimers and is deteriorating very slowly whilst my mum has deteriorated in 9 months more than MIL in 5 years. It is even more difficult to put a timescale on it with a mixed picture as they deteriorate in different ways. Alzheimer's tends to be a steady decline whereas vascular dementia can have very big step changes. If your loved one is having regular mini strokes (TIA's) you re likely to see more changes. Unfortunately it then depends on which part of the brain is damaged as to the problems it causes.
Often it is unfortunately just a case of dealing with each new problem as it arises. This is a good place to let off steam and get practical advice. The Alzheimer's society also has a telephone support service you can tap into and the Admiral Nursing Service (tel 0800 888 6678 ) is there specifically to support carers of those diagnosed with dementia
If your family member does not have Powers of Attorneys in place and is not able to give consent then you will need to apply to the court of protection for them to allow you or another family member to be able to act for them if they do not have capacity themselves.
 

Under_the_radar

New member
Jan 28, 2021
6
0
South Bucks
Hi @THarris,
I don't think it really matters what stage someone is diagnosed at as everyone progresses differently. That is probably why the doctors answers can give you more questions than answers. My MIL was diagnosed nearly 5 years ago with Alzheimers and is deteriorating very slowly whilst my mum has deteriorated in 9 months more than MIL in 5 years. It is even more difficult to put a timescale on it with a mixed picture as they deteriorate in different ways. Alzheimer's tends to be a steady decline whereas vascular dementia can have very big step changes. If your loved one is having regular mini strokes (TIA's) you re likely to see more changes. Unfortunately it then depends on which part of the brain is damaged as to the problems it causes.
Often it is unfortunately just a case of dealing with each new problem as it arises. This is a good place to let off steam and get practical advice. The Alzheimer's society also has a telephone support service you can tap into and the Admiral Nursing Service (tel 0800 888 6678 ) is there specifically to support carers of those diagnosed with dementia
If your family member does not have Powers of Attorneys in place and is not able to give consent then you will need to apply to the court of protection for them to allow you or another family member to be able to act for them if they do not have capacity themselves.
Thank you for your response, fortunately we had already got the ball rolling with power of attorneys before he declined and he was able to understand and have the capacity to give consent. We're currently waiting for it all to go through. He seems to have all of a sudden got a lot worse after a hospital stay (unrelated procedure) which caused a massive decline and he hasn't been the same since. We've been given leaflets after the diagnosis regarding living with dementia and generally its about the early stages, for example going on walks, shopping and driving still being okay etc. which has led to a lot of confusion with some members of the household because he clearly isn't capable of these things anymore, but a lot of the information out there assumes if you have just been diagnosed you are still somewhat mobile and unaffected the majority of the time. I think that can be hard sometimes for some family members to figure out what information is suitable for him in his current state when leaflets are discussing being somewhat active when he unfortunately isn't anymore. Like you say, everyone progresses differently, I think because we have got an answer unfortunately a lot later than if normal there's not a lot of information out there that starts at the point we are, so we're having to go through months/years worth of steps in a matter of days and weeks so its a little over whelming.
Thank you so much for the numbers and advice, I really appreciate you taking the time out to get back to me! x
 

Under_the_radar

New member
Jan 28, 2021
6
0
South Bucks
my husband only has vascular dementia. if you look on the website to resources they produce a booklet about all different dementias and vascular is one of them. im no good with links someone else may come along and give you the link . if you look at list of forums and carry on down, theres a list. not sure if that helps.
Thank you I will give that a read! I appreciate you taking the time to respond, sending love and support to the both of you. x
 

Sarasa

Volunteer Host
Apr 13, 2018
5,044
0
Nottinghamshire
Hi @THarris and welcome to Dementia Talking Point. You may find this site interesting Seven Stages of Alzheimer's. My mother has vascular dementia and I found it useful to see what stage she was probably at. However not everyone follows the same path or develops all the same symptoms in the same order, so don't use it as an exact roadmap. This is the information that @jennifer1967 mentioned Different Types of Dementia as well.
The important thing is that your relative with dementia is still themselves. My mother and my mother in law are both 93, both intelligent women and both are in the later stages of vascular dementia However what seems more important in how the dementia presents itself is their underlying personalities. Dementia has turned my mother into a risk taker with a hair trigger temper. My mother-in-law has just became very sweet and dependent on her family, with still a fair amount of empathy.
I'm glad you have Power of Attorney underway, it will be invaluable when it comes to making decisions about care. Also if your loved one has recently been in hospital and or had an infection that can really affect dementia a lot. Quite often you will see an improvement as they get better, though maybe not to where they were before they came ill.
Keep posting, this is a very friendly community and you'll get lots of help and advice here.
 

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