By Betty Weiss

When getting a diagnosis of Alzheimer’s, it is not uncommon for people to wonder about a prognosis and how long it will last. Surprising to many, it can last more than 20 years or as little as two or three. There are countless variables to consider, while at the same time, few absolutes that apply to every case—that’s the nature of the disease. Often, the younger the person is at onset, the more rapid the progression, although that is not always true. Similarly, the rate of decline is faster when there is a strong family history of the disease.

Statistics say that by age 85, half that population will have Alzheimer’s and, by then, few can expect a life expectancy of another 20 years. Many will have heart problems, diabetes, cancer or more—any of which can take them before Alzheimer’s. The same is true even with much younger people in their 50’s or 60’s who have other life-threatening diseases, other things can intervene. Even life style may play a part. Those who are more sedentary can develop problems with movement that may lead to falls, less muscle strength, poor circulation, and perhaps experience a shorter course of the illness than others who have been more active. Generally, someone with Alzheimer’s will live about 7 years after diagnosis, but remember, people can have the disease for many years before a diagnosis is made, so again, the pace of known progression varies with the individual. Still, Alzheimer’s is often very slow moving and it is not unusual for people to have many years of a very good life. My husband certainly did.

Such erratic progress is not confined only to Alzheimer’s. It occurs with diseases like cancer that can be incredibly aggressive in one person and somewhat mild in another. For many, treatments are effective and improving all the time, some will live a good long lifetime, others will not. But with Alzheimer’s both the mind and the body are involved making it a whole different ballgame to deal with.

Eventually, people with Alzheimer’s hear about ‘stages’ and want to know what they are and what stage one is in, how long will the stage last, what changes can be expected, what will happen in the next stage, how long can someone live? These stages are just a way of gauging the progression of the disease in any one individual and they are not absolutes. It is easy to get hung up on the stages, but they are too flexible to apply to each patient in a consistent, helpful way. There are those who want to know everything beforehand, what to look for, and plan how they will cope. They read and question everything, feel more in control. This can be very empowering, but Alzheimer’s is often too elusive to always have a handle on it. Then, there are people like me. I was perfectly willing to greet each new day and each new behavior as it occurred. Then—and only then--would I deal with it.

Stages were essentially developed within the Alzheimer’s medical community to categorize patients, in a general way, as they change. It helps doctors monitor progression, researchers to compare groups of patients with one another, and the family to have an idea of the overall condition of a loved one. Although they are useful to determine the level of care a patient will need, they are not terribly helpful as a prognostic indicator because of the great variability exhibited by different patients.

Still, knowing the stages can be helpful on the surface if one is thinking about placement, financial planning, continued home caregiving, selling a house, family dynamics and such to have an idea of what is likely to happen within a reasonably expected time frame. Because of my husband’s small business, our finances and medical decisions had been taken care of years before Alzheimer’s ever entered our lives. It is much easier if you don’t have to make decisions under emotional stress and being up against the wall—and these decisions will have to be made eventually—there’s no avoiding them. The longer they are put off, the harder they are to deal with. Whatever level of progression your loved one is in at the moment, if your legalities are not already in place—now--today—then make an appointment and get it done tomorrow.

Progression by stages varies a bit even with experts, but in most scenarios it begins with no overt symptoms of Alzheimer’s, or maybe some mild cognitive decline which will be chalked up to stress, age, depression, drinking or just being quirky. Seldom, if ever, does anyone suspect a brain disease, although the patient may feel that something is wrong but not talk about it. Tests are coming on line that will be able to detect Alzheimer’s earlier, before any of the bizarre behaviors arise. That’s important because as more medications and treatments come out, they can be given sooner and, hopefully, help slow the speed of the progression. But for the most part, it is still well hidden in the first stage of the early years. (Stages and the Caregiver will appear next month with details of how changing behaviors fit into the various stages of progression and how the caregiver must adapt.)

Betty Weiss is the author of the best selling Alzheimer's Surgery: An Intimate Portrait, and When The Doctor Says, "Alzheimer's:" Your Caregiver's Guide to Alzheimer's & Dementia. She does not give medical advice.                           
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