By Dietrich W. Miesler, MA, CMT
Originally published in Massage & Bodywork magazine, December/January 2000.
Before you consider massaging people with Alzheimer’s disease, you first have to learn enough about the disease to develop an understanding of the emotional problems you will face.
The best source of information is the relatively recent second edition of the Merck Manual of Geriatrics. It is written for physicians, mostly likely internists and general practitioners, some from foreign countries, in an effort to help those colleagues to somehow alleviate the tremendous nationwide dearth of geriatricians by presenting them with this fabulous textbook. I believe this is what makes the book so thorough, so lucid and so understandable, even for us lay-people.
This manual is a godsend for those of us fascinated by the tremendous variances you find among age cohorts, because it is true that there are typical 20-year-olds, but no typical 75-year-olds. Members of the latter group go all the way from mountaineer and long distance runner, to writer and piano virtuoso, to the helpless wheelchair occupant stuck in the hall of a nursing home.
The Phases of Alzheimer’s Disease
What is Alzheimer’s disease? According to Robert Butler, in his Merck Manual of Geriatrics contribution (“Alzheimer’s Disease – Senile Dementia of the Alzheimer Type”)1, it is “a progressive neuropsychiatric disease of aging found in middle-aged and, particularly, in older adults affecting brain matter and characterized by the inexorable loss of cognitive function, as well as affective and behavioral disturbances. It is a major public health issue. Treatment costs now exceed well over $40 billion/year.”
This tells us that the disease is progressive and that it destroys parts of the brain and hence is incurable. From Butler’s definition, we can also deduce that there must be several forms of the disease, because of the use of the term “Alzheimer’s Type.” His definition also implies that there are other kinds of dementia. But, according to the Merck Manual of Geriatrics, Senile Dementia of the Alzheimer Type (SDAT) accounts for over half of all dementia cases. We also come to this important sentence in the Merck Manual of Geriatrics chapter on symptoms and signs: “SDAT can be subdivided according to clinical stage, but there is great variability and the progression of stages often is not as orderly as the following description implies.”
In other words, it is difficult even for a physician to determine if the patient really suffers from SDAT, much less what symptoms to expect or what stage he or she is in. Later on in the Merck Manual, Butler touches on the difficulties of proper diagnosis by admitting that “prior to imposition of stricter diagnostic criteria, SDAT was misdiagnosed up to 50 percent of the time.”
The Merck Manual of Geriatrics goes on to describe the three stages of the disease as follows:
“The early stage of SDAT is characterized by recent memory loss, inability to learn and retain new information, language problems, mood lability and changes in personality. Patients may have difficulty performing activities of daily living (e.g. balancing their checkbook, finding their way around, or remembering where they put things). They may be unable to think in the abstract and use proper judgment. Irritability, hostility and agitation may occur in response to loss of control and memory. Other patients may present with an isolated aphasia or with visuospatial difficulties. The early stage may not, however, compromise sociability. Patients may be alert, making it difficult for the practitioner to uncover problems with cognition. However, families may be reporting strange behavior (e.g. the patient’s getting lost on the way to the store or forgetting who a recent dinner guest was). This may be accompanied by the onset of emotional lability.
“The intermediate stage of SDAT finds the patient completely unable to learn and recall new information. Patients frequently get lost, often to the point of being unable to find their own bedroom and bathroom. Although they remain ambulatory, they are at significant risk for falls or accidents secondary to confusion. Memory of remote events is affected, but not totally lost. The patient may require assistance with activities of daily living (e.g. bathing, eating, dressing, toileting). Behavioral disorientation occurs in the form of wandering, agitation, hostility, uncooperativeness or physical aggressiveness. At this stage, the patient has completely lost his sense of time and place, since normal environmental and social cues are ineffectively utilized. Neuroleptic agents or antianxiety drugs may be required to stabilize the patient.
“The severe or terminal stage of SDAT finds the patient unable to walk, totally incontinent and unable to perform any activity of daily living. Patients may be unable to swallow and require nasogastric feeding. They are at risk for pneumonia, malnutrition and pressure necrosis of the skin. They are totally dependent on their family caregiver, or a long-term care facility. Eventually they become mute. Recent and remote memory are completely lost. The patient cannot relate any symptoms to the physician. In addition, since there may be no febrile or leukocytic response to infection, the clinician must rely on experience and acumen when the patient looks ill.
“The progress of the disease is gradual, not rapid or fulminating; there is a steady decline, although some patients’ symptoms seem to plateau for a time. No motor or other focal neurologic features occur until very late in the disease. The end stage of SDAT is coma and death.”2
Looking at this bleak scenario makes it obvious the disease is not just a catastrophe for the patient, but for their family. Since the course of the disease extends over many years, it is especially hard on the spouse who often becomes the caretaker of the patient at home, especially if the patient is a man. Convalescent hospital care is frequently beyond financial capacity for the whole time-span. Sometimes grown children can make themselves available, but there is a heavy emotional price to pay when a child sees the respected head of the family slowly becoming an incontinent, incoherent stranger.
Deciding on a Massage Approach
Knowing all this, it’s evident you must fit in the social element if you want to be of service. If you have a choice, you should start with the patient as early as possible in the course of the disease, as touch has such a powerful effect on people. Touch is the first sensation we experience and the last we register when all other perceptions are long gone. The touch of your massage sequence can be retained as something pleasant, when all other connections are fading out. I would compare it to a rope you find in some well-maintained nature walks that a blind person can use for guidance and orientation.
When working with Alzheimer’s patients, set up regular half-hour appointments twice weekly. Work with your clients while they are in the supine position, as it is less threatening. Begin by concentrating on shoulders (fluffing), head (gentle fingertip friction), neck (fluffing and gentle rotation), and face (gentle fingertip friction). If this is tolerated well, you can extend your efforts to the lower back (rocking), hips (range of motion) and eventually the feet (reflexology); all of which can be done with minimal undressing. All these moves are intensely gentle. This sequence, developed by Day-Break is effective for people with age-related joint stiffness.
Although we usually start at the feet, I would prefer the sequence as described, taking the probable presence of anxiety into account. It will likely take several sessions before you settle on the ideal sequence that then should remain unchanged for a long time so that it sinks in. Explain to the client what you do while you work and do not ignore his input. The reason for the establishment of an unchanged routine is the hope that by developing a “constant,” the calming effect of the massage may remain recognizable once the brain syndrome becomes more pronounced.
What Results to Look (Hope) For
First and foremost, you want to make sure the client likes your work. You will be able to find out in the first few weeks whether the client is suitable for participation in the process. That’s why you have to reserve the right to discontinue the treatments if you are convinced your efforts are futile. This touches on another problem — massage based on personal interaction is often ambiguous.
Just because you are unsuccessful with one client does not mean you’ll be unsuccessful with all. The right chemistry between you and your client is just as important as in any other human interaction. That’s why it would be advisable to seek out a willing family member to train to help you by taking over some of the massages, for instance alternating from session to session. This active cooperation in a parent’s care might also take some sadness out of the whole situation and lead to closure.
How Do You Measure Success?
How do you measure improvement in a situation where decline is expected? If you work on someone with gait problems, there is a known base-line: the client’s condition at the start of treatment. You can use several precise methods of measurements – the distance walked within a given time, the steps taken to walk a given distance, no more need for a cane, the ability to substitute a walker for a cane, blood pressure, and even sophisticated blood flow measurements. You do not have this luxury in a situation where maintaining the present condition represents progress. Here, you depend largely on observable cues, such as spontaneous utterances from usually non-verbal patients such as “Oh, that feels good,” or non-verbal responses such as smiles or general relaxed expressions.3
In other words, it is much more difficult to come up with unimpeachable results when dealing with something like SDAT.
Assuming your approach is successful (i.e. if there is a noticeable improvement in the quality of life of your study subjects), what was achieved? First and most importantly, you made a suffering person, and probably his family, feel a little better. Secondly, you may have established a small beachhead for palliative, drug-less, hands-on treatment in the vast field of senile dementia, especially if you spread the word.
This may even be the more important result because there are some reversible mental conditions that masquerade as senile dementia, but are really behavioral responses to intellectual and social deprivation and to the individual’s inability to cope with the many personal losses the aged are generally experiencing.4
This could be the basis for training programs of massage therapists and family members. It should lead to expanded research projects surrounding clients in later stages of SDAT or other brain syndromes. One never knows how successful one can be. Spectacular results may be achievable, but are they repeatable? Curiosity may have killed the proverbial cat, but it also led to space travel.