Expert: Mary Gordon - 1/19/2011

Question
hi mary my uncle has vascular dimentia leading from korscoffs sydrom by what iv read on you page i think hes at end stage dimentia. he lived alone with cares going into him now he is in hospital as going to sleep and becoming non responsive. he has slept constant for past 2 weeks.the hosp having meeting with care givers to see if he will go into home before he started sleeping all the time he says hes finished and wants to go home. he still has his mind a lot of the time but i think his speech has gone. he woke yesterdy ate couple crisps and i asked him what was wrong with him he shook head more or less saying no.we dont want him going into home we want him in his own home and we will take care of him . especialy if hes dieing we want him as contented as possable as he already told us he does not want to go to residential home. can you advise us maybe how long hes got and if they will let us take him home and give him the dignity he deserves. he was put in a single room yesterday as he got bug so i no things are not good thank you bernadette

Answer
Hi Bernadette, vascular dementia is caused by mini-strokes  - it is progressive, as every time the person has another little tiny blockage, a little more brain damage occurs. It is relentless and incurable. I'm not sure how this dementia process is related to his Korsakoff's syndrome, other than the very unhealthy lifestyle that can lead to Korsakoff's can make the person more susceptible to "multi-infarct" or vascular dementia. . Korsakoff's is caused by a thiamine (B1) deficiency, and can be halted or even reversed if the person is eating properly and stops drinking (drink is frequently the major problem).  Here is information about Korsakoff's.
http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=98

It is quite possible to have more than one cause of cognitive impairment happening at the same time. It would be very unusual for him to be in true end stage dementia of any kind and be able to say anything coherent at all.  Usually when they are in the terminal phase of dementia, they have long since lost their speech. They might be able to make noises or garble, or come out with the occasional word, but they won't be able to speak in sentences or answer questions. Not only can they not speak, but they can't understand what is said to them.  In the end stage, he won't know who you are, and certainly won't be eating crisps. In the last stage, the person has lost most of their muscular coordination. As a consequence, they have a lot of difficulty with chewing and swallowing and can only handle solids that are the consistency of porridge or puddings. Crunchy items would not be something they could handle (i.e. they would choke).

It is very, very hard to guess survival time. A lot has to do with the person's overall health. Obviously, someone who is in very poor health from a constellation of problems, is going to have a shorter life span than someone who is very healthy other than their dementia. Because the person can't answer questions or cooperate with procedures, tests and treatments, it gets to be very hard to diagnose, much less treat health issues. Many families decide to keep the person very comfortable as possible, and just let nature take its course (i.e. not to bother the person with a lot of fuss and doctors when they already have a terminal illness in their dementia).

If your uncle has been living alone all this time, and there has been a sudden change resulting in his sleeping all the time, this does not necessarily mean he is immediately dying from end stage dementia. It may mean that he has had a health setback - he may have had another stroke, he may have an infection (which will seriously impact his alertness and cognition) or some other illness has developed. As I said, since they often can't answer questions or cooperate, it can be a challenge to figure out what is going on.

From what you describe, he may indeed be very ill and he may die, but it does not sound like what is going on is necessarily the true end stage of his dementia.

Your family really needs to have a good talk with his doctors to find out what they think is happening and how long they believe he may survive - not just in terms of his dementia, but his overall health, and frailty. If the changes you are seeing recently are from a new illness, he may only be temporarily set back, and may recover somewhat, and go on to live some time longer - but that doesn't necessarily mean he should live alone again, even with help. My mother in law survived two years in the last stage, unable to walk, talk, or do anything for herself. She had to be fed by hand, bathed and dressed, she was completely incontinent and in diapers, and she spent her days propped in a wheelchair or in bed. All she could handle was purreed foods - and she had to be watched very carefully to prevent chipmunking and choking. If she wasn't propped, she'd slump over as she had no muscular coordination or strength. She had to be moved and turned regularly or she'd develop bedsores. She needed heavy care (and a lot of specialized equipment) and supervision 24/7 and really had no idea where she was or who she was with. It was basically like having a 50 kilo newborn baby - she was that helpless and oblivious to what was going on around her.

She was in a nursing home during the final phase, because what she needed was too much for us to provide in a home environment and the heavy care was a 24 hour activity. As I mentioned, for her, it was two full years in that condition, gradually getting worse and worse. I can't tell you it wasn't heart breaking and gruelling for all of us, but we realized that for us, between jobs and children and other demands, no matter what we wished were true, there was no way we could provide that kind of care ourselves in a home environment for that period of time. Towards the end,she was in a palliative hospice type program and they were absolutely wonderful to her and tremendously kind and supportive to the family.

Does the doctor believe he is likely to pass away within six months? If you are in the UK, there are many hospice type programs that he may qualify for to either provide him with very compassionate end of life care at home or in a facility. Usually to qualify for a program with supports, the person's physician must confirm that they are terminally ill and likely not to survive more than a certain amount of time.
http://www.helpthehospices.org.uk/about-hospice-care/
http://www.ncpc.org.uk/

I am not sure what kind of help he was getting at home - was it NHS funded nursing care?
http://www.nhs.uk/chq/Pages/2392.aspx?CategoryID=68&SubCategoryID=155
If so, he might have to be reassessed as to what the NHS can provide, and what community services might be available from your local authority to assist with home care.  I only say this because looking after a person in the final stages of dementia can be very difficult physically and emotionally without a lot of help and support. I know you don't want to think about this, but you also need to look at what nursing home and hospice facilities and options there are. You can't make care decisions based on what the person wanted when they were well - as they become worse with their dementia, they need very different care. If he were well, of course you would never put him in a residential facility. When he becomes demented, and really doesn't know where he is, and needs very heavy care, the scene is different. You have to be relentlessly realistic about your family's ability to cope and provide the kind of comprehensive care he might need - particularly if this might go on for a relatively long period of time.

You need to find out what his real prognosis is - what the doctor thinks is likely to happen next, and how much longer might he live.  You should also ask a lot of questions regarding the type of care he will need and whether or not this is something you could realistically provide in a home environment, should he survive a few more years.  It's one thing to take on this type of care for a few months. It's another entirely if this might go on for years.

Have a frank talk with his doctors and caregivers before you decide what option might be the best choice for all of you. Below my signature I've pasted the last two of Dr. Reisberg's functional stages for dementia so you can get a feel for where he might be.

Hope this helps. I know how hard this is to watch, and what a struggle it is to cope with. He is lucky to have family so concerned about him and looking out for his best interests.

Mary

Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to orient in familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., paatients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of
action.

6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence

Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control.
The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently
present.

7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost