Expert: Mary Gordon - 7/23/2010

Question
my sister-in-law was diagnosed about 2 years ago with early onset alz. she is now 54. cognitive, connversation, emotional stability, all failing fast - huge changes in last 2 weeks. daily living skills inconsistent seemingly affected greatly by place and people! she is actually my "EX" sister in law, but we are very close; however , awkward to learn many details. seems to be level 6- early level 7, but significant changes after leaving her young, married daughter's home and presence!? constant crying and loss of self-help skills reported by daughter which subside significantly after couple of days with her elderly mother and me. is this typical of AD for symptoms to be so varied and inconsistent? do you have any idea as to average life expectancy for this type of early onset alz at this seemingly well-advanced stage?

Answer
Hi Dyan,

Yes, it is common for abilities to fluctuate. This is particularly true when there are any stressors. It is like the person is clinging to many abilities with their fingernails, and anything that changes in their environment or situation can loosen their grip.

Sometimes these changes are short term and last only a few days or week. For example, the person may really go down hill quite suddenly from some hidden health problem. The first thing you may notice is a rapid decline in cognition and abilities - and if you investigate, you may find they have an infection like a UTI, and once that is treated, they come back mentally a bit. As I know you know, it can be very hard to tell when a person with AD has a physical problem, since they often can't tell you how they feel, or answer questions - so you end up playing detective based on what you can see physically plus changes to behavior.  Even a small cold can cause a dramatic change in abilities. I can remember going to a special Mother's Day tea for my mother in law when she was in the Alzheimer's ward and being completely shocked by her condition. We had seen her a couple of days earlier, and she was reasonably alert, but at the tea, she was practically in a stupor. She wasn't talking and when she did, she made no sense, she was really out of it in terms of knowing where she was or what was going on. All of this turned out to be from a minor head cold. Once the cold was better, she came back to where she had been.

Other stressors - a change in environment, changes in routine, being tired or hungry, having too much activity, noise or people around. If you think about it, these things are a large part of why people with dementia "sundown" or seem to get worse at the end of the day. When they are at their best, often early in the day, they are rested, fed, relaxed, content and their environment is quiet and calm. As the day wears on, they get physically tired, they get confused by bustle around them and activities of the day, different people, different places. The get worn out mentally and emotionally from trying to cope, they may get hungry - and no surprise, by 8 oclock, they can't perform the simple tasks they could do without problem earlier the same day. Sometimes families recognize the pattern and try to time difficult activities like bathing for the time of day when the person is at their best.  

Mood as well as physical condition also has an impact - if the person gets agitated and upset about something, this can pull away from their abilities. When they get upset, they may stay upset long after they have any memory of what caused their distress. It's like their poor nervous system has no ability to deal with more than one thing at a time - so if they are stressed by anything at all, or trying to deal with something new (whether physical, mental or emotional) they lose their hold and suddenly they can't do things they could do last week, yesterday or even this morning. This does not mean they won't be able to do the task another day. It can be very puzzling and frustrating for the caregivers.

Everyone has good and bad days as well. I'm sure you have days when you are just blah and foggy, even though there doesn't seem to be a reason. You are just having a crummy day, making mistakes, forgetting things, and you hope you will be more together tomorrow! She is no different  - so you are going to see random fluctations over the day, from day to day, and from week to week, on top of the general and relentless slow downhill slide.

This is a really good article that might help you understand part of what your sister in law is going through. It's long, but many people find it very helpful.
http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...

People with early onset go through the same process as those with later onset in terms of the erosion of their abilities. The article also gives you insight into the nightmare they are plunged into. It's no wonder they get so stressed and upset. Their world is turning into a crazy swirl. I've often thought it must be like being extremely drunk at a huge party where you don't know many people. You can't get a fix on where you are or what is going on, and everything just jumbles all around you in a series of disjointed images. Nothing will stay still so you can get your bearings. It has to be very upsetting.

Keep in mind she cannot learn new things and is also losing her old learning. So, if you take her to a new place, she cannot learn her way around.
She cannot adapt easily to new routines. The few cues she relied on will be missing. She will be losing her grip on who everyone is. However, it is human nature to TRY.

The brain damage causes "agnosia" which means nothing looks right or recognizable. Even in a familiar place, things start to look strange and unfamiliar - which is why they get lost in their own neighborhood. Same thing happens with people and objects. They may not be sure who you are, or what items around them are for. By this stage in her dementia, my mother in law had lost her entire memory of her marriage and most of her adult life, although this would fluctuate. Usually she thought I was one of her sisters instead of her daughter in law. I can't imagine how hard it must have been to have to figure out who everyone around her must be all the time.

If she is very agitated and crying a lot, it might be wise to talk to the doctor about some medication - not to zombify her, but to ease her anxiety and depression to make her more comfortable.

My guess is that she will live another 2-5 years. This is just a guess.

In an elderly person, they often have many health problems. As their dementia progresses, it gets harder and harder to diagnose new problems, and more and more difficult to treat them. After all, the person can't understand what is going on or why, and can't cooperate. You can't explain their situation to them, or get them to answer questions. Medical tests or procedures, therapies and treatments can be painful, confusing, upsetting. Most families reach the point where they can't see the purpose of putting their loved one through all of it. The dementia itself is a terminal illness, and the family often decides to keep the person happy, serene and comfortable, free of pain - but stop all the poking and prodding and just let the person be.  The result is that many elderly people have their lives shortened by the dementia, but the dementia itself is not what ends their life. Complications of their underlying health problems bring the merciful end.

With your sister in law, because of her relatively young age, she is much more likely to be robustly healthy than a person 30 years her senior. Because of that, she is much more likely to live to the natural end of the dementia and be killed by it. My mother in law was very healthy for her age and in her late 70's when she hit Stage 7, and she survived a full two years there, incontinent,  unable to walk or talk, not knowing where she was or who she was with, not able to do anything for herself, being spoonfed purees.  

I know this is the last thing anyone who loves your sister in law wants to hear. Quite often, if the person is being well cared for, they can seem to plateau, and survive much longer than you would believe, given how poor their condition can seem. It seems ironic that anyone would pray for some infection or other health complication to carry someone off, but this is often the case with end stage dementia, because the persony can live on for some time in a very sad state. It can feel like having a corpse laid out for an extended time, without the closure of a funeral, because in a very real way, almost everything that made the person themselves has gone.

I know this is awful. She didn't deserve this. She is very lucky to have caring friends and relatives in her life to look out for her interests and make sure she has the best possible quality of life with what she has left.

Mary