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In our regular office practice, we usually don't have a formal family conference, but we try to achieve the same results by counseling and listening to the family over a series of visits. In either situation, the questions families ask are similar, and certain questions can be expected most of the time.
The questions families ask about AD can be grouped into "introductory" and "advanced" levels. Here are some of the questions we usually hear first and our usual responses.
"Will I get it?" This is very often the first question asked. While family members may be a little embarrassed about this apparently selfish concern, it is, nevertheless, understandable. Many people recognize that AD, at least in some cases, seems to run in families.
One way to answer this question is to describe studies involving identical twins. You may relate to the family that if AD were purely a genetic disease, when one twin had the disease, the other twin would surely get it, as twins have the same genetic background. However, studies indicate that the concordance rate (both twins with AD) is only 40 to 50%.1 Genetics in some cases may make a person more susceptible, but there probably is some other insult such as a virus infection, toxic exposure, or immune reaction, that causes the disease. Further, most cases of AD are spontaneous, and a family predisposition cannot be found.
It can be emphasized that the biggest risk factor for being diagnosed with AD is simply growing old. As we grow older, our chances of becoming demented increase significantly. One study suggest that 40% of people age 85 have dementia.2 Increasing age is the greatest risk factor for AD, and developing AD is a risk that we all assume as we grow older, regardless of our family history.
"Will psychotherapy help Mom (or Dad)?" Confronted with the patient's bizarre behavior, family members sometimes wonder if the patient should see a psychiatrist. It is useful to point out that AD is an organic mental disorder, not a functional mental disorder, and that psychiatrists generally treat functional disorders. Consultation with a psychiatrist is not usually necessary in caring for the AD patient, although psychotherapy can be useful in patients who have significant depression. Also, psychiatrists generally have expertise in the use of euroleptic medications, which are often used to treat behavioral disturbances. In these circumstances, psychiatrists can be very helpful.
"Can you give her sleeping pills?" Sleep disturbance can be a frustrating problem for both the family and the treating physician. Patients with early AD often awaken at night and may be extremely confused, wanting to wander outside or act on some delusion. Exasperated family caregivers may see no alternative to curbing this behavior than to give the patient "sleeping pills."
Hypnotic medications, if prescribed, may exacerbate the situation by adding to daytime confusion and possibly increasing the risk of falls. Also, hypnotics lose their effectiveness after a few days and may lead to dependence. These possible problems with sleep medications in this situation must be pointed out.
On the other hand, short-term use of short-acting hypnotics in selected patients, as part of a program to improve sleep hygiene, which includes keeping the patient awake during the daytime and late afternoon or early evening walks, may be useful. Many practitioners prescribe diphenhydramine because its side effects are felt to be comparatively mild, although caution is advised, because even this medication can contribute to confusion and may have other undesirable anticholinergic side effects. Triazolam (Halcion) is a short-acting benzodiazepine that may be useful in selected cases.
Many times the caregiver lacks sleep because he/she stays up at night worried that the patient will awaken, wander, and leave the house. The caregiver may lose sleep nightly because of this, even though the patient wanders only rarely. In such cases, inexpensive alarms can be set around the house, so that if the patient does walk outside a designated area, alarms awaken the caregiver. Simple alarms that are activated by stepping on a pad or breaking a light beam are available in electronics supply stores. More elaborate sensors are available in connection with household "burglar alarm" systems. After testing to assure that the system works, the caregiver may sleep soundly, sometimes for the first time in months.
"What about driving?" People with dementia are poor-risk drivers. In California, patients with dementia must be reported to the Health Department, which then notifies the Department of Motor Vehicles. Most states have requirements to report unsafe or potentially unsafe drivers. Reporting a dementia case does not automatically mean the driver will lose his/her license. It is up to the Department of Motor Vehicles to determine the driver's competence.
Regardless of whether the patient has a license, the family must ensure that unsafe drivers do not drive. For the patient, driving often is symbolic of independence and self-sufficiency, and giving up driving can be a major blow to self-esteem. Furthermore, some AD patients belligerently insist that they can drive safety.
It is no wonder that the issue of driving often becomes a source of great conflict for the caregiver. If the unsafe patient insists on driving, we recommend that the family find some way to ensure that the patient will not be able to do so. Perhaps a local teenager can be hired to "disable" the automobile, or a hidden ignition switch can be installed.
Furthermore, physicians should not feel guilty about reporting dementia cases to authorities. It is as important to society as reporting specified infectious diseases or epilepsy, diseases that physicians have reported for many years.
"Is it okay for him to ... ?" The family wants to include the patient in some activity, anything ranging from going to a restaurant to taking a trip to Disneyland. In general, activities are good for AD patients. We know that patients who are more active seem to maintain better physical and mental function. On the other hand, something as elaborate as a trip to Disneyland in a mildly demented patient may cause serious confusion with devastating results.
In general, the patient's tolerance to activity must be determined on an individual basis. Regular activities in familiar locations should be encouraged, but trips that require staying overnight in a strange environment must be approached with caution.
"I have power of attorney; is that enough?" No. Simple power of attorney usually deals only with financial matters. Decisions about health care usually are not covered. If the patient needs health care, but does not want it, there is no legal way to get the patient under care, unless it is an emergency. In fact, forcing a patient to submit in such situations is probably illegal.
If the patient is still legally competent, he or she should be encouraged to assign durable power of attorney for health care to a trusted friend or family member. If the patient is not legally competent, the only recourse is conservatorship or guardianship. While this step is intimidating and has some associated expenses, for the patient who is already incompetent, it is absolutely necessary. Once a patient becomes incompetent (and he or she surely will), the usual power of attorney is no longer useful.
The family should be counseled to seek professional legal advice with these issues. (For an in-depth discussion of durable power of attorney, advance directives, and legal steps to appointing a guardian, see J nofsky JS. Assessing competency in the elderly. Geriatrics 1990; 45(Oct):45-48.)
"Why does he accuse me of "fooling around?" A 74-year-old woman blurted out that her husband accused her of "fooling around," though she had been faithful to him for the entire 45 years of their marriage. The accusation was ludicrous, but it deeply hurt her, and her protestations only caused arguments. She was so upset that she hired a private detective for $300 to give her a lie detector test. When she confronted her husband with the results of the test, saying that it proved she was faithful, he responded that taking the lie detector test merely proved she was unfaithful, and further, he now knew who her partner was the private detective.
Paranoid ideation is a very common psychiatric syndrome in AD. It occurs in up to 40% of community-living patients.
In many instances, as in the above example, the patients accusations are part of the disease process, and the spouse (or other family member) should be counseled not to take them personally. Unfortunately, merely saying this often does not seem to make it easier for the family member, who continues to feel hurt.
As the patient's disease progresses, family members may come to the physician with a new set of questions.
"What stage is she in?" For family members, it is somehow reassuring to think about stages of AD and to place a patient into an appropriate category. This probably provides some sense of order in an otherwise chaotic situation. As it happens, many experts divide AD into three or more stages.
One of the most popular classifications divides the disease into early, middle, and late stages. The stages are then referenced by degree of memory loss, activity, sleep disturbance, and other characteristics. In early disease, the patient forgets names, has purposeless activity, and awakens at night.
In the middle stage, the patient forgets people, often develops pacing and restless activity, and is awake up to half the night.
In late disease, the patient forgets how to perform basic activities, such as eating. They may indulge in self-mutilation, eg, abrading the skin. Sleep patterns are often reversed, ie, sleeping only during the daytime and staying awake all night.
The problem with explaining this "staging" system to the family is that there is considerable individual patient variation. When the progression does not occur as predicted, the family may become confused, lose confidence in health care providers, and argue among themselves. We have found, for example, that while agitation occurs more often in the late stage of AD, it occurs in 35% of early stage patients, as well.
While it is easier to predict that in the late stage of disease the patient will be unable to take care of himself because of multiple functional losses, almost any particular characteristic can occur in early disease. Thus, any discussion of the concept of AD staging with family members should be accompanied by the caveat that there is significant individual variation.
"Have you heard of this new drug?" Over a dozen new medications to treat AD are now in phase I to phase III trials before final approval by the Food and Drug Administration. Word of these speculative treatments reaches the public through magazine and newspaper articles. Not only do family members want their loved one to have access to the best care, they also may feel guilty if they do not do all they can to insure that the patient "gets every chance." There is an almost desperate anxiety to do everything possible to return the patient to her former intact self. The intensity of this desperation should not be underestimated.
For example, we are participating in one of the new drug studies. Somehow, a patient's family in West Virginia got word of this and contacted us: they wanted to move to Sacramento to allow their grandmother to participate. This represents the extent to which families will grope for even unproven cures, and will probably come as no surprise to the seasoned clinician.
Unfortunately, none of the drugs currently being tested is expected to cure or even totally arrest the progression of AD. At best, they will delay disease progression. We refer patients to centers doing drug trials, but if that does not work out, we assure families that the ultimate outcome would be the same, whether they participate in a drug trial or not This reassurance is necessary to assuage their guilt about not making enough sacrifice to get the patient into a drug trial somewhere.
It may also be useful to point out in an understanding way, that folk cures and unorthodox "medical" treatments may be available, but none of them has ever provided objective evidence of benefit.
"What can I do? I promised him we'd never put him in a nursing home." To this statement we are tempted to respond: "Good luck!" That may lack sensitivity, but it probably reflects an accurate prediction of what the future holds for most families in this situation. Though the burden of caring for an AD patient increases gradually, in almost all cases it becomes too much for even the most well-intentioned family to handle.
For families that can afford to hire caregivers, patients can remain at home. When that is not possible, usually the only reasonable alternative is nursing home placement.
We try to support the family as they consider these alternatives. We point out that it may not be a question of whether the patient enters a nursing home, but when. Again, family feelings of guilt need consideration when the issue of nursing home placement arises.
"What about her weight loss?" There are three facets to the response to this question. First, concurrent disease must be considered. The demented patient may not complain of specific symptoms, making a diagnosis more difficult. Concurrent illness should be considered when weight loss of more than 5 to 10 pounds occurs.
Second, some weight loss is typical of the AD process. Calories can be used up with restless activity. Most AD patients have decreased olfactory sense, so food has less appeal. Depression, especially in early stages, also may affect appetite. In more advanced stages, patients may forget how to eat and have decreased response to hunger. In general, weight loss may represent nothing more than the natural history of AD.
The third facet of concern regarding weight loss is its potential role in family dynamics. Weight loss in an AD patient can provoke care-giver guilt and family conflict. Markers of successful care are not readily apparent in AD, as the disease inevitably causes worsening of the patient's condition. The patient's weight may become, to the family, a tangible indicator of patient status. When the patient loses weight, family members not directly involved in the patient's care may accuse the caregivers of falling short. Caregivers themselves may feel guilty over their inability to prevent the patient from losing weight.
There is enough guilt surrounding the care of AD patients without adding the burden of worrying about benign weight loss as well. It is important, then, to evaluate the patient for medical causes of weight loss. If none are found, the caretaker and family need to be reassured that some weight loss is typical for AD patients.
If circumstances indicate, nutritional supplements can be given to reverse a weight loss trend. Advising the caregivers to make mealtime a ritual, and provide more time and assistance for eating, are useful as well. Patients whose weight loss suggests malnutrition should not be continued on a low cholesterol, low salt, or any other restrictive diet, unless absolutely necessary. Sometimes the appetite can be spurred on by providing "junk food," and the family should be reassured that, in this situation, this is acceptable. A sensible approach to nutrition, avoiding neurotic overconcern, may help the patient and offer a reasonable way for the family to work together.
"I am overwhelmed." This is not a question, but a statement, and one that requires some thoughtful consideration. The family member/caregiver may in fact be a "hidden patient." Almost a third of AD caregiving family members end up receiving psychotropics for their own emotional problems-a rate much higher than comparable non-AD caregivers.
A critical factor in predicting which caregivers wind up receiving psychotropic medication is whether caregivers feel they are receiving support in that role. Those who feel they are getting good family and community support are less likely to feel as much anxiety, depression, and desperation associated with the care of the patient. On the other
hand, Clipp and George
As physicians caring for caregivers, we can provide support and counseling. When the caregiver does show signs of distress, instead of reaching for the prescription pad, it may be time to double our efforts to provide counseling and support.
"What can I do when he refuses to cooperate?" This question sometimes is heard when the caregiver wants to make some change affecting the patient's day-to-day living. The caregiver knows it's the "right thing to do," but the patient doesn't want her to do it ("he won't let me"), and he intimidates her. This might be dubbed the Henry VIII syndrome. (It is alleged that Henry VIII developed dementia before his death. His advisors and commanders recognized his errors of judgment, but were afraid to confront him. This syndrome occurs typically in a woman who has lived in a patriarchal family all her life and has felt her decision making role to be secondary to her husband's. These caregivers require gentle support, as they must become more assertive and assume a role now for which they have had no experience or previous inclination.
For the patient with AD, we don't have much to offer by way of direct treatment. Rather, the target for most of our primary care intervention will be the caregiver and family. For them, our being available to answer questions and show concern is, for the moment, the best form of support the health care profession has to offer.
Cohen D, Eisdorfer C.
Loss of Self: The family resource for the care of Alzheimer's disease and related disorders.
New York: Norton; 1986.
Mace NL, Rabins RV.
The Thirty-Six Hour Day.
Baltimore: The Johns Hopkins University Press; 1982.
1. Nee LE, Eldridge R, Sunderland T, et al. Dementia of the Alzheimer type: Clinical and family study of 22 twin pairs. Neurology 1987, 37: 359-363. 2. Evans DA, Funkenstein H, Albert MS, et al. Prevalence of Alzheimer's disease in a community population of older persons: Higher than previously reported. JAMA 1989; 262: 2551-2556. 3. Wagg RE, Jeste DV. Overview of depression and psychosis in Alzheimer's disease. Am J Psychiatry 1989; 146: 577-587. 4. Cooper JK, Mungas D, Weiler PG. Relation of cognitive status and abnormal behaviors in Alzheimer's disease. J Am Geriar Soc 1990; 38: 867-870. 5. Clipp EC, George LK Psychotropic drug use among caregivers of patients with dementia. J Am Geriatr Soc 1990; 38: 227-235. 6. Mahendra B. Dementia. A survey of the syndrome of dementia. London: MTP Press, 1987: 191.
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