It's instinctive to want a map. Where's the next turn? What's the next step? It's a human thought pattern. We at least think we want to know what happens next.
After we find out that a loved one has Alzheimer's disease (or any other disease) it's only natural to research it. What can we expect and when can we expect it?
Find an Alzheimer's Care Community »
The National Alzheimer's Association has developed a very useful tool, or "staging system," to use as a frame of reference when coping with Alzheimer's disease. The organization, however, will be the first to tell you that people are not programmed to follow these stages in a direct line. No matter how much we'd like to "know" what stage someone is in, we can't. One day, our loved one may seem like he or she is in stage five, and the next day the disease may seem more like stage four or six. With that in mind, we'll look at the stages as presented by the National Alzheimer's Association, so we at least have a shot at some order.
Stage 1: No impairment (normal function)
There is some thought in the medical community that Alzheimer's disease may start years, if not decades, before we have even a clue that anything is wrong with ourselves or our loved ones. Not much we can do here until there is more known. Genetic research and much more sophisticated technology will no doubt make this an important and focused area of study as we march into the future. But, for now, most of us will never know (would we even want to?) if we are in stage one of Alzheimer's disease.
Stage 2: Very mild cognitive decline (may be normal age-related changes or earliest signs of Alzheimer's disease).
At this time you or your loved one may have a sneaking suspicion that something sinister is on the horizon. A little more forgetfulness, but it could be natural aging. A little more irritability when that forgetfulness occurs, but isn't that normal? Hmm, maybe we should chat with a doctor. Still, we aren't likely to get satisfaction (such as a definite yes or no). Most likely, we will hear something to the effect that it's just normal aging, and maybe we should do more crossword puzzles or take a class. Oh yeah, and eat more chocolate. Chocolate has antioxidants in it that are good for the brain. That I can do.
Stage 3: Mild cognitive decline
This is a tricky point. The Alzheimer's Association says that early-stage Alzheimer's disease can be diagnose in "some, but not all," individuals with the symptoms recognizable to family and others close to the person having problems. These symptoms include problems with words and names, decreased ability to remember names of newly introduced people (oops, that one scares me – I forget new names all the time), unusual performance issues at work or in social settings, retaining little of material that has been recently read, losing or misplacing something of value to the person and/or a decline in the ability to plan and organize.
We can chat with a doctor, and even request the cognitive tests at this point, but is this conclusive? This is still a point where a diagnosis could be a tough call. Yet, personally, I would suggest that if someone is very concerned, he or she should see a team of physicians uniquely qualified to diagnose dementia – and the often subtle differences between dementias – because this a point where some medications can help maintain better brain function longer into the disease. If we brush off worries too long, and then go for help, we may have lost valuable time. Still, this isn't a time to panic. Just get in, have a good general physical and perhaps see a qualified neuropsychologist that has experience with diagnosing dementia. Schedule any and all of the tests suggested by this expert. Follow through with all appointments. And then, get a grip. There is likely still room for doubt.
Stage 4: Moderate cognitive decline (Mild or early-stage Alzheimer's disease)
The Alzheimer's Association says that by now there are clear-cut indications that a careful medical examination can detect. There would be an obvious decrease in knowledge of recent events – personal and community and/or world. There would a decrease in the performance of the standard test where they ask someone to count backward from 75 by 7s, which scares me to death. I'd have to use my fingers to figure that out. Please, please, all of you doctors out there, make sure that you know in advance if the person you are evaluating is a math challenged English major.
Less scary for me, is testing the capacity to perform tasks such as planning dinner for several people; however the ability to balance my checkbook is another one that I would rather not be tested on. I don't think I'd do well.
Again, remember that it is important to know how well did the person performed similar tasks, at an earlier time. I'm not kidding here. Some of us don't do so well with numbers, yet show no signs of dementia. Some of us don't comprehend what we read all that well, but that doesn't mean we have dementia. They are looking for changes here. That's why they do a lot of tests – to rule out the math impaired, like me; to rule out the organization impaired, like my son. These are characteristics that have been with us all of our lives.
Stage 5: Moderately severe cognitive decline (Moderate or mid-stage Alzheimer's disease)
Okay, this is where things get pretty obvious and serious. This is when the going gets rough for the caregiver and the frustration gets huge for most Alzheimer's patients. This is where a great deal of the agitation occurs. People are aware that they aren't functioning normally, and it understandably makes them angry. They often take it out on the person or people they feel safest with – their spouse and/or their adult children. Those that are their caregivers.
The Alzheimer's afflicted person will have major memory gaps, and people at this stage often need some help with daily living. This, my friends, is where I would have to stop blaming my right-brained thinking and if I were to have these problems, I likely would have to concede that I had dementia, probably of the Alzheimer's type.
People in this stage are often unable to recall their current address or phone number. They may not remember where they graduated from school, can become confused not only about the date (not too hard to do) but the season, as well. They have trouble with easier arithmetic such as counting backward from 20 by 2s. They often need help choosing appropriate clothing for the occasion or even for the season.
The Alzheimer's Association says that in stage 5, people usually retain "substantial knowledge about themselves," such as their own names and those of their children. They also, generally, do not need help eating or using the toilet.
Stage 6: Severe cognitive decline (Moderately severe or mid-stage Alzheimer's disease)
This stage is where really significant personality changes can emerge. That sweet person you used to know suddenly is combative, volatile and possibly violent at times. The Alzheimer's Association says that at this stage, people lose "most awareness of recent experiences…as well as their surroundings."
People in this stage can be very inventive, when trying to outwit the caregiver. They are also prone to wandering, so keeping them safe can be a challenge. They've been known to find ways to unlock several locks on doors and to enable a supposedly disabled car. They are not dumb, folks. This isn't about intelligence.
Caregivers have been known to remove and hide car batteries. People sometimes get alarms installed that are meant to let you know if someone is breaking in, but they get them so they know if their Alzheimer's afflicted loved one is breaking out.
During this wandering prone stage, an Alzheimer's afflicted person must be watched carefully, as an unfortunate number of them have, literally, been stranded out in the cold. There are alarms and ID bracelets and other forms of protection on the market that can help keep track of, or find, someone who is wandering.
Stage 6 is also a phase where, according to the National Alzheimer's Association, "(People) lose most awareness of recent experiences and events as well as of their surroundings."
They often don't remember their own histories and can forget the names of people they love (though they usually recognize faces). They need help dressing and toileting. This, too, is the stage where the sleep cycle is greatly disturbed for this person (to say nothing of the caregiver's sleep cycle).
Late day/early evening confusion, often called "sundowning," where the person is agitated and confused is thought to have to do with light and/or activity changes that trigger the Alzheimer's patient's need to do something important, but they don't know what (perhaps it's time to "go home from work?"). Whatever the cause, this is a difficult time of day for many caregivers and dementia patients.
Stage 6 is also the phase where the caregiver will witness more paranoia or suspicions ("they are trying to steal my dentures"). Hallucinations are not at all uncommon, and compulsive behaviors such as picking, tissue shredding, scratching and hand-wringing can occur.
This is often the phase where the person with Alzheimer's may need to be moved to a secure environment where they are safe and the caregiver can get some relief from the 24/7 job of caregiver (often that occurs earlier).
Stage 7: Very severe cognitive decline (Severe or late-stage Alzheimer's disease)
This phase, before death, is the sad time when speech is often unrecognizable, there is general incontinence, eating is difficult (or food refused – in any form) and swallowing can be impaired. They usually need assistance and support walking and even sitting.
This stage was one that I found particularly hard for caregivers to tolerate, in that many become frantic when the Alzheimer's patient wouldn't eat. We, as healthy humans, get hungry. We think they must be starving. However, as the body prepares to die, it often does not want food. The organs are shutting down.
I've shared, throughout all the phases, many a tearful session with caregiving friends. From Stage 3 on, this disease is a mind-bender to deal with. Each stage puts new demands on the caregiver.
Education can help. Contact the National Alzheimer's Association or the Alzheimer's Foundation of America. The adjustment to the final stage, which will bring death, is one where hospice can support the caregiver, as well. Don't go through this alone. Caring for someone with Alzheimer's takes a super-human effort. This is a disease where community support can make all the difference. Get help for your loved one. Get help for yourself.