Alzheimer s disease: Answering questions commonly asked by patients' families JAMES K. COOPER, MD family that if AD were purely a ge netic disease, when one twin had th@ Once a diwwsis j)atient's disease, the other twin would surein, tisuauy tm a numberi ns, get it, as twins have the same ge range', netic background. However, studies @caregi indicate that the concordance rate heum@ (both twins with AD) is only 40 tr, suppoi 50%.' Genetics in some cases ma%- an @itant @part of- c make a person more susceptible, but there probably is some other insult. Cooper JX AL-heimer's dise f such as a virus infection, toxic expo- sure, or immune reaction, that causes the disease. Further, most cases of AD are spontaneous, and a family predisposition cannot be fter a new patient is evaluated usually don't have a formal family found. Aand diagnosed at our Alzhei- conference, but we try to achieve the It can be emphasized that the mer's disease center, the family or same results by counseling and lis- biggest risk factor for being diag- other caregivers are invited (after tening to the family over a series of nosed with AD is simply growing obtaining the patient's permission) visits. In either situation, the ques- old. As we grow older, our chances of to discuss our findings and their pa- tions families ask are similar, and becoming demented increase signif- tient care concerns. At this "family certain questions can be expected icantly. One study suggests that conference," we review the steps we most of the time. 40% of people age 85 have demen- have taken in establishing the diag- tia .2 Increasing age is the greatest nosis and discuss the prognosis of Initial questions risk faqtor for AD, and developing Alzheimer's disease (AD). We re- AD is airisk that we all assume as we view community resources that may The questions families ask about grow older, regardless of our family be available, and we remind the AD can be grouped into "introduc- history. family of legal issues that need at- tory" and "advanced" levels. Here "Will psychotherapy help tention. Then we invite the family are some of the questions we usually Mom (or Dad)?" Confronted with to ask questions, and we listen. hear first and our usual responses. the patient's bizarre behavior, fam- Most families have a great deal of "'Will I get it?" This is very ily members sometimes wonder if emotional stress they want to venti- often the first question asked. While the patient should see a psychi- late and a number of questions they family members may be a little em- atrist. It is useful to point out that want to ask. barrassed about this apparently AD is an organic mental disorder, In our regular office practice, we selfish concern, it is, nevertheless, not a functional mental disorder, understandable. Many people rec- and that psychiatrists generally ognize that AD, at least in some treat functional disorders. Con- cases, seems to run in families. sultation with a psychiatrist is not Dr. Cooper is associate professor and One way to answer this question usually necessary in caring for the Director a/ Ge@trics, Department Of InternatMedicine,UniversityolCalifo,,@ istodescribestudiesinvolvingiden- AD patient, although psycho- Davis. tical twins. You may relate to the therapy can be useful in patients 38 Geriatric* March 1991 Vol. 46 No. 3 ant depression. @o, psychiatrists generally have pertise in the use of neuroleptic Medications, which are often used p treat behavioral disturbances. In pese circumstances, psychiatrists mn be very helpful. . "Can you give her sleeping pills ? " Sleep disturbance can be a frustrating problem for both the Emily and the treating physician. Patients with early AD often twaken at night and may be ex- tremely confused, wanting to wander outside or act on some delu- sion. Exasperated family caregivers -may see no alternative to curbing this behavior than to give the pa- tient "sleeping pills." Hypnotic medications, if pre- scribed, may exacerbate the gitua- tion by adding to daytime confusion and possibly increasing the risk of falls. Also, hypnotics lose their ef- fectiveness 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 se- lected patients, as part of a program to improve sleep hygiene, which in- cludes keeping the patient awake during the daytime and late after- noon or early evening walks, may be useful. Many practitioners pre- scribe diphenhydramine because its side effects are felt to be compara- tively mild, although caution is ad- vised, because even this medication can contribute to confusion and rnay have other undesirable anti- cholinergic side effects. Triazolam (Halcion) is a short-acting benzodi- azepine that may be useful in se- lected 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 des- ignated 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 as- sure that the system works, the caregiver may sleep soundly, some- times for the first time in months. "What about driving?" Peo- ple with dementia are poor-risk drivers. In California, patients with dementia must be reported to the Health Department, which then no- tifies the Department of Motor Ve- hicles. Most states have require- ments to report unsafe or potentially unsafe drivers.. Report- ing a dementia case does not auto- maticauy mean the driver will lose his/her license. It is up to the De- partment of Motor Vehicles to de- termine the driver's competence. Regardless of whether the pa- tient 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 driv- ing can be a major blow to self-es- teem. 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 driv- ing, 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 de- mentia cases to authorities. It is as important to society as reporting specified infectious diseases or epi- lepsy, diseases that physicians have reported for many years. "Is it okay for him to ... ?" The family wants to include the pa- tient 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 main- tain better'physical and mental function. On the other hand, some- thing as elaborate as a trip to Dis- neyland 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 ac- tivities in familiar locations should be encouraged, but trips that require staying overnight in a strange envi- ronment must be approached with caution. "I havepower 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 pa- tient under care, unless it is an emergency. In fact, forcing a patient to submit in such situations is prob- ably illegal. If the patient is still legally com- petent, he or she should be encour- aged to assign durable power of attorney for health care to a trusted friend or family member. If the patient is not legally compe- tent, the only recourse is con- servatorship or guardianship. While this step is intimidating and has some associated expenses, for the patient who is already incom- petent, it is absolutely necessary. Once a patient becomes incompe- tent (and he or she surely will), the usual power of attorney is no longer useful. continued Vol.46No.3Marchl99IGariatrice 39 Families' questions about Alzheimer's continued The family should be counseled to seek professional legal advice with these issues. (For an in-depth dis- cussion of durable power of at- torney, 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 "foolingaround'?" 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 mar- @. The accusation was ludicrous, but it deeply hurt her, and her pro- testations only caused arguments. She was so upset that she hired a private detective for $300 to give her a lie detector test. When she con- fronted 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 40 Ceriatics March 1991 Vol. 46 No. 3 was unfaithful, and further, he now knew who her partner was-the pri- vate detective. Paranoid ideation is a very com- mon psychiatric syndrome in AD. It occurs in up to 40% of community- living patients.3The most common paranoid delusion concerns in- fidelity, and the second most com- mon is suspicion of theft.3 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. Questions asked as the disease progresses After accepting the diagnosis, most family members over time will get information from other source, books, articles, the media, and tai ing with other people who care fq relatives with AD. As the patient's disease pro. gresses, family members may comt to the physician with a new set,l questions. "What stage is she in?" Fal family members, it is somehoii reassuring to think about staget of AD and to place a patient inu an appropriate category. Thii probably provides some sense (ii, order in an otherwise chaotic sit, uation. As it happens, many ex. perts divide AD into three oi more stages. One of the most popular classifi. cations divides the disease into early, middle, and late stages. The stages are ther referenced by degree of memory loss, activity, sleep dis- turbance, and other characteristic& In early disease, the patient forgets names, has purposeless activity, and awakens at night. In the middle stage, the patient forgets people, often develops pac- ing 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 ir@ self-mutilation, eg, abrading the skin. Sleep patterns are often re- versed, 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 indi- vidual patient variation. When the progression does not occur as pre- dicted, the family may become confused, lose confidence in health care providers, and argue among themselves. We have found, for ex- ample, that while agitation occurs more often in the late stage of AD, it occurs in 35% of early stage pa- tients, as well.' Therefore, des- cribing agitation as a marker of Families' questions about Alzheimer's continued late stage AD may be misleading. Wandering is also considered a marker of late disease, but occurs in 12% of early disease. While it is easier to predict that in the late stage of disease the pa- tient will be unable to take care of himself because of multiple func- tional losses, almost any particular characteristic can occur in early dis- ease. 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 medica- tions to treat AD are now in phase I to phase III trials before final ap- proval by the Food and Drug Ad- ministration. Word of these speculative treatments reaches the public through magazine and news- paper 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 pa- tient "gets every chance." There is an almost desperate anxiety to do everything possible to return the pa- tient to her former intact sell 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 grand- mother to participate. This repre- sents the extent to which families will grope for even unproven cures, and will probably come as no sur- prise to the seasoned clinician. Unforb=tely, none of the drugs currently being tested is expected to cure or even totally arrest the pro- gression of AD. At best, they will de- lay disease progression. We refer patients to centers doing drug trials, but if that does not work out, we as- sure families that the ultimate out- 42 Geristrice March 1991 Vol. 46 No. 3 come would be the same, whether they participate in a drug trial or not This reassurance is n to as. suage 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 ob- jective evidence of benefit. "What can I do? I promised him we'd never put him in a nursing home." To this state- ment we are tempted to respond: "Good luck!" That may lack sensi. tivity, but it probably reflects an ac- curate prediction of what the future holds for most families in this situa- tion. Though the burden of caring for an AD patient increases gradu- ally, 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 alter- native is nursing home placement. We try to support the family as they consider these alternatives. We point out that it may not be a ques- tion of whether the patient enters a nursing home, but when. Again, family feelings of guilt need consid- eration when the issue of nursing home placement arises. "What about her weight loss?" There are three facets to the response to this question. m First, concurrent disease must be considered. The demented pa- tient 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. s 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 ap- Families' questions about Alzheimer')S continued Depression, especially in early s@, also may affect appetite. In n2ore advanced stages, patients may forget how to eat and have decreased response to hunger. In general, weight loss may represent nothing more dmn the natural history of AD. o The third facet of concern reT garding weight loss is its potential role in family dynamics. Weight loss in an AD patient can provoke care- giver guilt and family conflict. \larkers of successful care are not readily apparent in AD, as the dis- ease inevitably causes worsening of the patient's condition. The pa- t ient's weight may become, to the ,arnily, a tangible indicator of pa- @,ient status. When the patient loses weight, family members not directly Involved in the patient's care may accuse the caregivers of falling @hort. Caregivers themselves may ,reel guilty over their inability to pre- vent the patient from losing weight. There is enough guilt surrounding the care of Al) patients without add- ing the burden of worrying about be- r,llgn weight loss as well. It is .mportant, then, to evaluate the pa- r@ent for medical causes of weight loss. Lf none are found, the caretaker and family need to be reassured that some weight loss is typical for AD patients. If circumstances indicate, nutri- tional supplements can be given to reverse a weight loss trend. Advising ,.he @givers to make mealtime a rit- ual, and provide more time and assis- tance for eating, are usefw as well. Patients whose weight loss suggests malnutrition should not be continued r)n a low cholesterol, low salt, or any r)ther restrictive diet, unless absolutely ,Necessary. Sometimes the appetite ,-.an be spurred on by providing "junk food," and the family should be reas- rured that, in this situation, this is acceptable. A sensible approach to nu- ,rition, avoiding neurotic overcon- @em, may help the patient and offer a .reasonable way for the family to work tc)gs-,ther. "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' suggest that many of these caregivers are not actually reflecting a psychiatric disorder, but rather the expected distress associated with caregiving for the AD patient. As physicians caring for care- givers, we can provide support and counseling. When the caregiver does show signs of distress, instead of reaching for the prescription pad, it nfay be time to double our efforts to provide counseling and support. "What can I do when he re- fuses to cooperate?" This ques- tion 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 intimi- dates her. This might be dubbed the Henry VIII syndrome. (It is alleged that Henry VIII developed demen- tia before his death. His advisors and commanders recognized his er- rors of judgment, but were afraid to iM.6 confront h ) This syndrome oc- curs 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 hus- band's. These caregivers require gentle support, as they must become more assertive and assume a role now for which they have had no ex- perience or previous inclination. Summary 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 interven- tion will be the caregiver and family. For them, our being available to an- swer questions and show concern is, for the moment, the best form of support the health care profession has to offer. E Resources Alzheimer's Association. 70 East Lake Street, Suite 600, Chicago, Illinois 60601. 1-800-621-0379. Cohen D, Eisdorfer C Loss of Self.- The fam- ily resource for the care of Atzheimer's dis- ease and related disorders. New York: Norton,- 1986. Mace NL, Rabins RV. The Thirty-Six Hour Day. Baltimore: The Johns Hopkins Univer- sity Press; 1982. References 1.Nee LE, Eldridge R, Sunderland T, et al. Dementia of the Alzheimer type: Clinical and family study of 22 twin pairs. Neu- rology 1987, 37-359-363. 2.Evans DA, Funkenstein H, Albert MS, et al. Prevalence of Aizheimer'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 depres- sion and psychosis in Aizheimer's dis- ease.AmJPsychiatryl989; 146:577-587. 4.Cooper JK, Mungas D, Weiler PG. Rela- tion of cognitive status and abnormal be- haviors 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 de- mentia. J Am Geriatr Soc 1990; 38:227-235. 6.Mahendra B. Dementia. A survey of the syndrome of dementia. London: MTP Press, 1987.-191. Vol.46No.3MarchlgglGeriatrics 47