Expert: Mary Gordon - 8/5/2009

Question
My mother was diagnosed with dementia 2 years ago. She is 67 years old.  She has had mental problems for many years and a personality disorder that no one could ever diagnose correctly.  She has been living alone with help and has been doing okay but slowing declining. One thing that didn't fit the diagnosis was that she did have some short term memory.  She would remember when her grandson visited and new recent news events and would ask about them.  We visited her one day with my grandmother (her mother who is 87) and they had a nice visit.  Throughout my mothers life she has never gotten along with her mother who blamed her for many things in her life and always told her (my mom) that she was a difficult child and something was wrong with her.  My mother had been wanted to see her for years (her mother lives out of state).  They talked for about 1 hour.  Some of the language was hard to understand.  The next morning my mother was found on the floor with no clothes on and had BM's all over the house.  She refused to get dressed or let the care worker clean her up.  At that point we decided it was time for her to go to the nursing home, but the only thing to do at that moment was to call 911.  They took her to the emergency room and while there my mom was sitting up and talking (although making no sense)-she did ask about her mom.  The emergency room sedated her and she ended up being admitted and they kept her sedated for 3 days, slowly bringing her out, while they ran tests.  They could find nothing wrong with her.  By then she wasn't eating but could speak some but not sit up by herself and they never tried to get her out of bed.  My family worked on getting her to eat which started to do some.  But within days her language has failed she can't even sit up when the bed is put in a sitting position and it seems that she can't see anymore. She is refusing most food now.  When you do understand her she wants her mommy or wants to go home.  She is very agitated (but she has been for years when something isn't want she wants or someone doesn't understand her)and screams and tries to hit everyone.

My question is is it normal to go from a level 5 to a level 7 in days?  My family is having a real hard time knowing that one day she had a great visit with her mom could eat, walk, talk some and now within 2 weeks she is gone.

Answer
Hi Laura

When your mother was assessed as having a progressive cognitive impairment two years ago, what was the actual diagnosis? Dementia is not a diagnosis. The word dementia just describes a symptom - in other words, when you say a person has dementia, you mean they have a mental impairment. That does not tell you what the dementia is FROM, and that is the part that matters.

As you can appreciate, the brain is a very delicate thing, and all kinds of diseases can injure it - Alzheimer's is just one of them. It does matter what the cause of your mother's issues are, since what can be used to treat one kind can actually hurt someone with another kind.  Different causes of dementia can also have different symptoms that can be puzzling to the family.

For example, there is a common cause of dementia called Lewy Body dementia. One of the hallmarks of this kind of dementia are dramatic swings in cognition. They often don't have many memory issues in the early days, but can go from seeming fine to practically being in a stupor. They also sometimes have very vivid hallucinations, and develop speech problems early in the game. The otber thing about this dementia is that certain drugs commonly used for Alzheimers, such as neuroleptics, can dramatically worsen their symptoms. I'm not saying this is what is going on with your mom - I'm just using this as an example of why it can be crucial to know exactly what they think she has.

When she was diagnosed, what tests did they put her through? Have you spoken to the doctor who diagnosed her to get a firm handle on what kind of dementia she has?  I know this is complicated by her psychiatric history.

In a nutshell, to answer your question, no, for the majority of the progressive dementias, it isn't normal to leap stages this suddenly unless something like one of the following is going on:

-there is underlying illness that hasn't been detected. Even a urinary tract infection will cause some dramatic changes in cognition in some people.
- something sudden and catastrophic has occurred like a brain bleed, stroke, blockage, an increase in cranial pressure etc.
- a reaction to medications - which is particularly suspicious given that she has gotten so much worse since she got to hospital where they have been medicating to the eyeballs (per your comment about the degree of sedation).

You don't mention what medications they have her on - you need a complete list, and they need to be reviewed carefully in light of the symptoms.  You also need to know what she was on prior to the sudden change, and what they put her on in hospital. What new ones did they put her on?  And just as importantly, what might they have stopped suddenly that she was on previously  - is there a chance that some of this was induced by withdrawal symptoms?

She may even have a form of neuroleptic malignant syndrome from the meds they put her on in hospital. Neuroleptics are antipsychotic medications but this syndrome can happen from other psychiatric drugs like some of the tranquilizers, antidepressants and lithium. Unfortunately, symptoms are sometimes misinterpreted by doctors as symptoms of mental illness. The first symptom is usually muscular rigidity, followed by fever, changes in cognition, including agitation, delirium and coma, changes in blood pressure. Other symptoms may include muscle tremors and pharyngitis. Once symptoms do appear, they rapidly progress and last anywhere from eight hours to forty days.
If you read about NMS be aware that it isn't always as extreme as described - it can be milder. There is also a form of it called neuroleptic-induced catatonia.

I would want to review her entire situation with the doctor and ask him or her to have an open mind - something has changed quite suddenly, and this does not sound like a "mood" issue, but some sort of organic illness, whether from a physical illness, or from the actual meds they have given her to try and control her aggressive and agitated behavior. Ask for a doctor who is a specialist in dementias. Sometimes you may get lucky and find a psychiatrist who is also a geriatric dementia specialist (my mother in law was actually diagnosed by one, which was fantastic).

Don't let them put you off because of her history or her dementia. SOMETHING is dramatically different and wrong here, and both you and she deserve an objective review of the situation and some plan of action. If they aren't interested, my personal take would be to ask them to at least try weaning her off all the psychiatric meds and see what happens.  

Hope this helps. You really do need a sympathetic doctor who can look at the whole situation with fresh eyes. Thinking of you.

Mary G.