Expert: Mary Gordon - 9/27/2008

Question
My mother has been diagnosed with vascular demntia.She has been in a nursing home since last december after having a stroke.She has diabetes,high blood pressure and congestive heart faulure.She can't walk anymore but she is still eating.Just the past 3 days she has lost most of her memory. I think she has had another stroke.She seems to have gotten weaker and she has become quieter.From the research I have done on the computer the last 2 days I believe she has entered level 6 of 7 levels.My family and I would like to know what is next for her.From what I have read on this web site and other questions am I to understand she could suffer a long time and just get alot worse?I just need a little more ensite into were it goes from here.

Answer
Hi Cynthia, here are the most commonly used descriptions of Stage 6 and 7 (from Dr. Reisberg).

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 to 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., patients 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

I hate to say it, but if she is no longer ambulatory, she's more likely heading into Stage 7 than 6. Once they can no longer walk, they become very susceptible to all kinds of problems because they don't move around enough.

It sounds like she is in very frail health, with a constellation of problems. It does sound very much like she has had another vascular episode of some sort that has caused another drop in cognition.

I guess the real question for you now is - what do you do going forward ? If she developed a crisis, would you want her recuscitated. Would you want her taken to the emergency ward? Would you want oxygen, IVs, tubes, catheters? Artificial feeding? A hospital stay? Surgery? Tests? How about she gets infections like pneumonias? Would you want aggressive treatment with antibiotics?

I ask not to be cruel, but more to give you some things to consider. You and the rest of her family have to be onside about how to manage her care going forward - you all have to feel that the right thing is being done by her.

We opted for palliative care only for my mother in law. We decided there was to be no pain or discomfort, that we were going to keep her as serene and happy and comfortable as was possible - and leave the rest to nature. There was to be no poking and prodding and running around, no messing around with her, scaring her, putting her in ambulences or strange places. We allowed pain killers and medications that were for her comfort, and we decided we would treat only those things that would cause pain or misery (like a skin problem, or a UTI). We had a DNR order on her, and would not allow tubes, IVs, catheters, oxygen etc. We did everything in our human power to make her feel loved, and to bring whatever little pleasures were in our power, from spoonfuls of  ice cream or a soft teddybear.

She lived about two years after she stopped walking. Her speech went almost entirely shortly after the walking - after that, she would make nonsense noises, and only occasionally come out with a word or phrase. She just gradually moved less and less, and slept more and more, until she got to the point where she had to be propped in the chair.
She ate less and less, no matter how she was coaxed (I don't think she felt hunger, or if she did, she didn't know what it meant, or what the food was). Eventually, she went into a phase where she wasn't interested at all, and the end came about six weeks later. It was very peaceful and gentle. She did not seem to suffer at all. She just sort of slipped away, although it was very hard on all of us, to sit by and let it unfold. She died of end stage dementia, because she had no other complications to carry her off sooner, and from our perspective - more mercifully, if for no other reason than living like that was her worst nightmare.  

My mother in law was radiantly healthy other than her dementia with none of your mom's serious issues, and she was also only in her late 70's. If it wasn't for the dementia, she would have made it into her 90's. Your mother's overall health being so compromised, it is very likely that everything will pile up on top of her, and carry her off  - my bet (and take it for its worth, given that I don't know her or the details of her medical condition) would be perhaps a year.

Have you had a talk with her doctor about what he or she thinks? It is hard to be accurate with a prediction, but generally, her prognosis seems very poor in terms of survival time.

I'd ask for a care conference, with the staff from the facility, and the attending physician present and have a frank discussion about what the future holds, what you think her wishes were, what the family wants, and what the options are. If hospice care is something you might consider, find out what is available, and at what point would she qualify? Does the facility offer palliative care? How long does the doctor estimate she may live (its hard to be accurate but he may be able to at least give you a general ballpark based on his experience and knowledge of her specific situation.

The really important thing for you to do is now that she is heading into the twilight stage of her vascular dementia, is how do you want this to be managed - - and just as important as HOW, is WHY. Think through why you might want to opt for various things - and be honest with yourself. Think about what the kindest, most loving thing is, think about your own fears and struggles with guilt or saying goodbye. Think about what she would want, what you would want were you in her shoes. Talk to your pastor or rabbi if you are a member of a faith community, discuss it with family. You have to be able to look back and feel you did the right things, and the answers will not be the same for every situation, every individual and every family.

I do understand what you are feeling - and I know its very painful. She's lucky to have such a thoughtful daughter looking out for her.

Mary G.