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Alzheimer's      ...for caregivers

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What Is Alzheimer’s Disease? 

A Caregivers Definition

Alzheimer's Disease causes progressive, profound, permanent brain damage that always ends in death.

• The cause of it is not clearly known yet and there is no treatment that will stop the progression of the disease or cure it.

• There seems to be a familial genetic predisposition in some cases but there are also those who develop symptoms in families in which no history exists.

• There is some research that suggests early onset of the disease, which strikes people as young as their 30's and ranges through the 60's, can result from a combination of carrying the genes for this disease and having the additional trauma of a serious illness, surgery, chemo/radiation therapy, closed head injury and a number of other triggers.

• Your odds of developing the disease are increased if one or more of your parents has it.   It is possible that you will develop symptoms at the approximately the same age your parent developed symptoms.   However, there is research that shows symptom free aging even though genes are present from both parents.

• The late onset group seems to begin symptoms in the 70's through 90's.

• Once symptoms appear and the diagnosis is made, it becomes a progressive downhill course until death although the length of each stage varies from person to person.

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We are as unique in how the symptoms unfold as we are as individuals.  The length of each stage varies somewhat and there is some overlapping. 

Not everyone develops all the symptoms with the same level of severity at the same time.  The order in which skills are lost and the duration of each stage is unique to each individual, however, even with some variations the over all progress of the illness is fairly predictable. The length of each stage depends a great deal on the physical health the person enjoyed prior to the onset and their level of functioning prior to onset.

• The highly functional may take longer to move through the first stage simply because they have so much more to lose, and for those people, the longest period of this disease may very well be from the point of onset to when symptoms become noticeable.   From diagnosis to death, the course of the disease is fairly proscribed and the time limits of each stage, as they appear on the Gwyther chart, (Figure IV) are a fairly accurate prediction give or take a few months.

• The physically fit who don't suffer from other illnesses such as diabetes, heart disease, cancer or more virulent forms of dementia such as Creutzfeldt-Jacob Disease at onset of symptoms may face a longer road in the second and third stages simply because they are physically healthy to begin with.   The age of onset also plays a part because the younger you are the more physically fit you tend to be.   However, even in this circumstance the course of the disease can move quickly.

• There are also other variables and those really have to do with whether their environment is user friendly or not and how our people are approached by their caregivers, which has everything to do with caregiver attitudes and acceptance of the person with the disease.   As stated elsewhere in this page, if a caring, accepting environment is provided, functional level will be maintained at a higher level longer.   In other words they will be allowed to function at their highest level of competence.   If their anxieties and fears are fed into by the anxieties and fears and unrealistic expectations of those surrounding them, their own ability to function has to be affected the same way a child's is affected by similar negative attitudes.    We learn and prosper through encouragement and acceptance.    We don't when we are constantly berated and belittled.

• Depression and anxiety add considerably to loss of function.    One has to consider the normal anxiety of being given a terminal diagnosis, but add to that the stress of losing abilities, of being faced with mounting confusion and realizations of not being able to do things that were second nature all their lives to the equation and you have a human being in the worst state of vulnerability.    Add to that the stress, the grieving, the anger of the caregiver who doesn't fully understand what is happening themselves and you have a situation that is unique from any other illness.    

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While the early losses are manifested in 'memory loss,' the overall effect of this disease is devastating and no function is spared by the disease by the late stage.   When the brain dies, we die.

If the thrust of commentary about this illness shifted from memory loss to progressive terminal brain damage, I believe there would be a hue and cry echoing around this world to find a way to stop this disease.   I think it also needs to be said, that as long as Alzheimer's is characterized in terms of 'forgetfulness, or memory loss,' a concept that does little more than trivialize the enormity of the impact this illness has on those who get it, the bias that exists towards it and our people will continue to fester.

• Unfortunately the brain not only organizes and utilizes conscious memory, (those things of which we are aware,) and our ability to think in abstract terms, it also has dominion over subconscious memory, which houses our involuntary emotional reactions, our dreams, our habits, our sociability, our personalities, our conditioned responses, and our rote memory, (those things of which we are vaguely aware.)

• It further regulates the unconscious’ memory in our brains which houses data which is largely inaccessible but which nevertheless influences who we are and how we act. In other words those things that influence us but which we can rarely if ever bring to conscious awareness.

• The brain also controls the involuntary biological functions that make our bodies work. Every move we make, our ability to lift a pencil, walk, run, sit, talk, lie down is regulated by our brain’s connection with our body. Once that connection has been severed we are helpless. The brain also regulates digestion, respiration, blood pressure, elimination, our immune system, all our organs. When the brain dies, we die.

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All forms of Alzheimer’s / Progressive Dementia follow a pattern that is broken into three major stages of deterioration.

Whether The stages of Alzheimer's/dementia are referred to as The Early, The Mid, and The Late Stage, or The First, Second and Third Stage, each stage is unique and demonstrates noticeably different changes in function.   

This has to affect how caregivers approach their people and this includes the professional caregiver as well as the family caregiver.  The duration of each stage and the manner in which each stage progresses remains fairly consistent and predictable and that does provide the caregiver with some guidelines as to what to expect as the various phases of this disease unfolds.    I know there are those out there who have a problem with categorizing Alzheimer's into stages but from the vantage point of a caregiver who has been through the entire process of this disease, the categories do hold some relevance in helping to define the tasks, measure the distance traveled and anticipate what is yet to come.   I found that helpful.     

Of all the reams of material I amassed on this disease over the 10 years I cared for my husband, the following charts compiled by Dr. Barry Reisberg and Ms. Lisa P. Gwyther, ASCW, were the materials I most frequently referred to when I needed a quick fix on where we were in the scheme of things.  I offer copies of these charts to you for your reference material and suggest that you keep them available for your future reference.   

Throughout this section I will be referring to these lists as Figure I, Figure II and Figure III.    Figure IV, the Lisa Gwyther list is provided for your enhanced view of this disease and although I don't make reference to it specifically in this section it nevertheless stands as a valuable tool and I recommend you refer to it and keep it available for information.   

Dr. Barry Reisberg is the Director of the Zachary and Elizabeth M. Fisher Alzheimer’s Disease Education and Resources Program, New York University Medical Center; and professor, Psychiatry, New York University of Medicine, New York.  His material first became available to me at a seminar I attended at the International Center for the Disabled, in New York City in 1986.

Figure I, "The Functional Assessment Staging of Alzheimer’s Disease, (FAST)."  © Seven major areas of functioning are delineated with accompanying sub areas.

Figure II, "The Stages of Deterioration," © delineates the three major stages of degenerative dementia and categorizes them into the following:

Stage 1 - Forgetfulness

Stage 2 - Confusional Stage

Stage 3 - Demential Stage

Figure III,  "The Functional Stages in Normal Human Development and Alzheimer’s Disease," © compares ages 1 month through 12 years in childhood development with the last 5 stages on the FAST scale, which is in essence the last 12 years of life for someone with this disease.

Lisa P. Gwyther, ACSW, is the Director, Duke Family support program, Center for Aging, Duke University Medical Center.   She also delineates three stages to this disease and provides a list of symptoms and examples to help caregivers assess where on the scale their people reside.  Her, "Stages of Symptom Progression in Alzheimer's Disease," first appeared in, "Care of Alzheimer’s Patients: A Manual for Nursing Home Staff." Pages25-27, 1985. Published by The Alzheimer’s Association and the American health Care Association.  

Figure IV, "The Stages of Symptom Progression In Alzheimer’s Disease," ©

The First Stage - (2-4 years leading up to and including diagnosis).

The Second Stage - (2-10 years after diagnosis).

The Third/Terminal Stage - (1-3 years).

While these scales, and others, address the symptoms and phases this illness goes through they really don’t address the illness from a caregiving point of view except by inference.  

For example, if you look at item #6a, on the FAST Scale, it reads:  "Difficulty putting clothing on properly without assistance."    While the symptom was clear enough, I still had no way of understanding the reasons behind my husband losing that ability, and without understanding the process I could hardly understand my role or the tasks.  I filed the words:  "Difficulty putting clothing on properly," in my brain with a very literal translation of those words.  He would just forget how to dress himself and I would have to help.  I had no concept of the greater picture.   I had no notion of how complicated that phase would become

What I didn't fully integrate is that his brain was losing the ability to organize action and retrieve information and apply his knowledge to what were truly rote tasks and that the accompanying failing motor control and eye-hand coordination would also contribute to his inability to dress himself.   Once his brain began to lose connection with his body even the most simple tasks in dressing, such as knowing whether his zipper was up or down would become a catalyst to limiting his independence and mine in ways I could not have imagined.  

He was still cognizant enough to know having the zipper in its proper place was important, and he was cognizant enough to obsess about it.  He would zip it up and down several times invariably leaving it open.  He would self-consciously reach for it in public.  He would constantly ask if it was alright.  There was no amount of practice that allowed him to re-learn that simple task and be confident that he had it right.  It affected his being able to use public rest rooms, leaving the apartment alone or filling his time without my supervision.  He also was losing his sense of touch and he didn't always know if 'his thing' was in his hand or still in his pants.  The loss of that one aspect of dressing resulted in his wetting himself, the floor, peeing all over the toilet, appearing with his shirt tails caught in the zipper, and faced with a friend telling him he needed to adjust himself, or worse yet, a friend having to clean their bathroom floor when he finished or try to ignore the fact that he had peed himself.    The amount of energy that zipper drained from both of us could fill a book.  And that was just one small aspect of stage 6a on Dr. Reisberg's FAST scale.

This may be considered a knit-picking exercise in semantics, but, in the early stages I think there is a distinction to be made between  'forgetting how to use a zipper' and 'losing access to the information that is still in there somewhere.'   Losing access to your brain's memory bank leaves you helpless very much like the computer data bank that becomes inaccessible because of some glitch.    The information is still in there.   The problem with Alzheimer's is that the glitch can't be fixed, the connectors are in the process of shorting out.  Even though there will be times of great clarity, access to their history will be less and less until it is permanently denied.    To treat them as if they have turned into an empty shell with nothing going on in the brain is to do them the utmost disservice as human beings.      

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The brain holds our identity as human beings and to lose the function of this organ is, in a very real sense to lose our identities.   But, is it a fate worse than death?   

Most of us will verbalize the thought, that to live past the use of our brain is indeed a fate worse than death.    Easy to say on this side of the disease.  It is so easy to say it that we tend to lose sight and feeling for those who actually face this horror.   Questions need to be asked:  

• What about those who do suffer this fate?   Are they dead before their time?  

• Are their identities solely existent in their own ability to recall, relate, and remember the sum total of their lives or do we, who still have the use of our thinking process, have an obligation to afford regard and reverence in spite of their affliction?   

• Aren't we transferring our own fears about this disease to those who actual get it?

• Is there ever justification to strip a person of their rights as a human being?

We must begin an effort to separate the disease process from those who get it if attitudes towards this disease are to be changed. 

~*~

©2000

Books I found helpful on Alzheimer's Care - 

Care of Alzheimer’s Patients, Lisa P. Gwyther

The Complete Guide to Alzheimer's-Proofing Your Home  Mark Warner, Ageless Design. 

The Loss of Self,  Donna Cohen, Ph.D. & Carl Eisdorfer,  Ph.D., M.D., 

The 36 Hour Day,  Nancy L. Mace  & Peter B. Rabins

Guide to Alzheimer's Disease  Barry Reisberg, M.D.

The Man Who Mistook His Wife For A Hat, and Other Clinical Tales,  Oliver Sacks 

The Shattered Mind, The Person After Brain Damage, Howard Gardner

The Moral Challenge of Alzheimer’s Disease,  Stephen G. Post 

When Your Loved One Has Alzheimer’s   A Caregiver’s Guide, David L. Carroll

(Available from Amazon.  Look for more in-depth reviews in the section titled 
"Books I Found Most Helpful)