What is family therapy? There are many different models of treatment for families in distress, and it is beyond the scope. In most models of family therapy, all the members of a nuclear family are seen in a group session with one or two therapists or counselors. In some models, only one or two members may be seen, and the treatment is considered to be family therapy because the focus of discussion is on family relationships. At times, members of the extended family may also be involved in treatment, especially if they are closely concerned with the problems, as is often the case in families where there is neurological impairment of one of the older members. Treatment sessions are typically held weekly for ninety minutes, although they may be spaced more widely apart. In one model, families are brought in for an initial two-day treatment session and then brought back several weeks or months later to follow up on the treatment and to make further interventions if necessary. This is a useful model for families where members are spread over a wide geographical area.In most models, family relationships are treated, rather than anyone individual in the family, although frequently one person is the identified patient. In the family with a neurologically impaired member, the other members may define the demented individual as the patient or they may define one of the other family members as the dissatisfied one, i.e., the problem for everyone else. On the other hand, the family may come into treatment all acknowledging their distress, and ask for coping skills. In the early stages of treating families with a neurologically impaired member, the interventions may involve education about expectations of the impaired person, prognosis, and coping skills. However, treatment may need to go beyond education in order to maximize the well-being of both the family and the demented patient.

According to one model of family therapy, inappropriate behavior patterns are the result of family members oversensitivity to and compliance with one another’s needs and wishes to the detriment of their own development as individuals. Therapy sessions seek to demonstrate such entanglements. For example, some grown children may cope with a demented mother by avoiding her, while one daughter may respond to her brothers and sisters un involvement by becoming totally involved in caring for the mother, even to the point of neglecting her own nuclear family (i.e., her husband and children). She may resent her siblings’ lack of involvement at the same time that they feel guilty about abandoning their sister and their mother. Or, more subtly, the caregiver may shield the other family members from discovering the extent of their relatives impairment, protecting them from a fact that they do not want to face. As a result, the caregiver prohibits herself from confiding in others about her feelings or asking for relief from her duties, and/or the rest of the family criticizes her when she does complain because they believe there is so little to complain about.

Family treatment would consist of demonstrating such patterns of protection, thereby helping family members to perceive their own feelings and roles in creating and maintaining such patterns. Therapy consists of helping family members to gain insight into maladaptive entanglements and to develop new, more adaptive patterns. In another treatment model, families are viewed as having problems because they do not communicate straightforwardly, often using complicated communication patterns to maintain control over other family members. For example, one rather uninvolved member of a family may criticize the caregiver for discussing the possibility of putting the impaired member into a nursing home, the implication being that the caregiver does not love the patient. This may be an effort to handle personal guilt about abandoning the family member by attempting to keep the patient in the caregiver’s home. Therapists may attempt to change levels of communication to more straightforward patterns by showing the family how to communicate well. Then again, therapists may engineer changes in one person’s behavior that will automatically change the whole family’s way of communicating.

Yet a third treatment model examines the family members’ ways of communicating rather than what they communicate to each other. For example, members of the family may communicate only with each other, rather than with nonmembers, as in the case of a family that will not allow its members to let outsiders know about its problems, even when there is a desperate need for expert help. Yet the family itself may not ever resolve the problem, so that one or more of the members eventually feels great distress. Such a family would be said to be too enmeshed or intertwined with one another and too separated from the rest of the world. Certain particularly troubled families have been found to avoid seeking outside help with problems revolving around caring for an Alzheimer patient.

Therapy within such a framework involves helping the family to restructure itself to deal more effectively with the current situation, bringing in outside help if necessary. If the family is not enmeshed, but disengaged (that is, not sensitive enough to each other’s communications), members may need help to restructure their relationships to be closer. Typically the therapist helps the family to change by engaging in exercises that give them practice in seeing current ways of communicating and in using new patterns of communication. For instance, the barriers between two subsystems may be too rigid for messages to pass across, so the therapist may ask one of the members to sit next to another member and to address him or her directly.

Studies have not uniformly shown family counseling to be successful in alleviating problems associated with caring for Alzheimer patients. For instance, family counseling focused on problem solving has sometimes yielded poor results. However, at least one study reported the success of family counseling in which the caregivers were taught to communicate their needs and the family to listen sensitively and to give emotional as well as practical support.

Alzheimer caregivers should learn to be assertive in asking friends and relatives for what they need. Often others would like to help but don’t, know how. Make a wish list of errands or weekly jobs that need to be done, such as grocery shopping, laundry, dusting, vacuuming, yard work, paying bills, and the like. Other list items might include time spent with the Alzheimer person, such as taking him for a walk or inviting him to help in the garden raking leaves or digging in the dirt. You might ask for supervision of the individual while you attend an Alzheimer support group or go to the movies. Have your list handy and when someone asks how they can help, show them the list and let them help. Many people are too proud to either ask for or accept help. This attitude will make it very difficult for you to sustain the day in and day out care that the Alzheimer individual will require and will deny others the satisfaction of knowing that they have contributed in a significant and meaningful way to the care of the patient and to caring for you as well.Friends should remember that caregivers may be very busy and tired and may neglect initiating contact with their friends. This does not mean that they do not care about their friendships. Continue to make those phone calls, make those visits, and give those invitations, even if they are not reciprocated. They mean a lot and there will be a time in the future that will allow for greater reciprocity. There is a very large risk for social isolation of the caregiver. If caregivers and their support systems do not actively fight such isolation, the result will be stress, depression, and ill health.

Support Groups

One of the most helpful and important sources of information and emotional support for the caregiver is a local Alzheimer Association support group. Although it may be difficult to attend that first meeting, every person have ever talked to has told me how important the Alzheimer support group has been in providing information, friendship, and support from others who are going through similar feelings and problems. Strongly suggest that you seek out such an organization as early as possible.

The family of an Alzheimer patient may pursue involuntary commitment to a state institution when the patient’s behavior has become so disordered or disruptive that it becomes intolerable or unmanageable. Some nursing homes are unwilling to accept a patient who poses severe behavior problems and demonstrates a significant lack of personal care, as is sometimes the case with Alzheimer patients. For these reasons family members may want to consider the commitment process.Each state has some provision for the involuntary commitment of individuals who are mentally disturbed. In most areas of the country community mental health centers provide families with advice regarding commitment procedures. In larger communities there are specialized courts and court personnel who deal exclusively with such problems. The local mental health association is generally a good source of information on such matters.

There are generally three requirements that must be met before an individual may be involuntarily committed, although these requirements may vary from state to state -

(1) The individual must be determined to have a mental disorder

(2) He or she must require hospitalization (for example, the patient cannot manage in a less restrictive environment)

(3) The person is a danger to himself or others.

There must be at least clear and convincing evidence of these three requirements, generally based on recent overt acts, before an individual may be committed.

During the 1970s there were several landmark judicial decisions related to the return of mentally impaired individuals to community facilities. These decisions dealt with the right to refuse treatment, the right to less restrictive alternatives to institutionalization, and the right to treatment.

Right to Treatment

Once an individual has been hospitalized, what must occur? What is the obligation of the state to provide treatment? The U.S. Supreme Court, in its decision of Donaldson v. O’Connor, stated that the right of society to involuntarily hospitalize a person who is not dangerous is based on a quid pro quo. The right to hospitalize rests on a responsibility to provide treatment. In Donaldson’s fourteen years of hospitalization the court noted that all he received was “milieu therapy,” which, in his case, consisted of sitting in a room filled with other persons who were deemed mentally ill. Without more evidence that treatment was being provided, the Supreme Court declared Donaldson was unjustly hospitalized and ordered his release. The basic premise of this case is that a patient who is hospitalized must be treated or released provided they represent no danger to them ­ selves or others.

Right to Refuse Treatment

Once a patient has been hospitalized, what is the right of the patient to refuse treatment? The United States District Court of New Jersey, in the case of Rennie v. Klein, set a precedent for determining the conditions under which a psychiatric inpatient has the right to refuse treatment. John Rennie was an involuntary mental patient who, at the time of the hearing, had been admitted to psychiatric hospitals twelve times. Although involuntarily committed, he had never been declared incompetent. Rennie brought a civil action against the hospital staff to prohibit them from administering drugs to him by force in the absence of any emergency. However, the court delineated four factors that must be considered in determining whether an injunction should be issued when a patient refuses medication.

These factors are -

(1) The patient’s capacity to decide on his particular treatment

(2) The patient’s physical threat to other patients and to staff at the institution

(3) Whether any less restrictive treatments exist

(4) The risk of permanent side effects from the proposed treatment.

The court held that an involuntary mental patient has a right to refuse medication in the absence of an emergency, as a legitimate exercise of his constitutional right to privacy. In the absence of an emergency, some due process hearing is required prior to forced administration of drugs. This decision, by enumerating the factors to be considered in cases when patients refuse treatment, reflects strides by the court toward establishing further civil liberties for involuntary mental patients. This is not a national standard, however, and a clear statement on refusal of treatment remains to be given by the Supreme Court. There is little doubt that the growth of civil liberties in this sphere will continue. The day may come when persons suspected of mental ill­ness will have the same procedural and substantive protection as those accused of committing a crime.

Families who are considering having their Alzheimer relative committed should consider that state hospitals no longer warehouse patients. There is a duty to provide treatment to the extent that it can be provided. Consideration is also given to removing from state hospitals patients who do not need intensive types of care; such patients are placed in less restrictive environments. Many Alzheimer patients require an intermediate level of care that may be more efficiently provided in such less restrictive environments as nursing homes. Moving patients into the less restrictive alternative is the sensible course of action for the patients, the staff of institutions, and family members.

Progress in the diagnosis and treatment of Alzheimer’s disease has made painfully slow yet steady progress in the last decade. With the devastating toll Alzheimer’s wreaks on the nearly 4 million victims in the United States and their families, at an estimated cost of $100 billion per year, it is little wonder that patients and families seek information on every modicum of progress in the battle against Alzheimer’s disease. Announcements of new discoveries appear regularly in the popular press, often arousing an excitement that cools as the initial reports appear overstated.In the last decade the popular press has regularly reported “breakthroughs” in the diagnosis and treatment of Alzheimer’s disease, frequently with sensational headlines and stories. “NEW HOPE FOR ALZHEIMER’S VICTIMS” was the headline beckoning from the June 18, 1990, issue of Time magazine. The article reported that “it will soon be easier to identify Alzheimer’s earlier and more accurately” and went on to claim that “Alzheimer’s appears to be yielding to treatment.” Reports in the intervening years have proven the tests and treatment discussed in the Time article to be less than the headlines indicated. The statement that “it will soon be easier to identify Alzheimer’s earlier and more accurately” stemmed from an article in the Journal of the American Medical Association that described a biochemical test capable of correctly identifying 86 percent of brain samples of Alzheimer sufferers taken at autopsy. The article reported that scientists expected within two years to develop a test to detect the Alzheimer disease-associated protein in the spinal fluid, hence giving rise to an effective clinical diagnostic tool. The second statement, that “Alzheimer’s appears to be yielding to treatment,” resulted from an application to the Food and Drug Administration by the Warner-Lambert pharmaceutical firm to market a drug called Cognex, the brand name for tacrine, also referred to as THA (tetrahydroaminoacridine). The article reported that the drug “supposedly slows the loss of brain function in 40 percent of Alzheimer’s patients who are given the medication and could conceivably add one or more productive years to the lives of Alzheimer’s victims.”

Four years later Newsweek reported “tacrine hydrochloride is of limited usefulness and only in the early stages of the disease”. In the fall of 1996 Time recounted that “while some patients who take tactine benefit from subtle to moderate improvements in mood and short -term memory, many others do not. Moreover, tacrine can produce a raft of side effects”. The test using spinal fluid is not yet the diagnostic tool predicted in 1990 and its results and application are still being examined; yet is has recently been touted once again as a “new diagnostic tool” . News reports in 1994 heralded: “There’s still no cure in sight, but a new test, using eye drops, could be a breakthrough”. The article described how the eye drops caused the pupils of Alzheimer’s patients to dilate approximately four times as much as normal controls. Nineteen ninety-five brought announcements of the discovery of more “new genes thought to be responsible for Alzheimer’s disease” and in 1996 the “possible antidotes to Alzheimer’s” were reported to be estrogen and aspirin. Newsweek and Science News recounted in 1996 that Alzheimer’s disease may soon be predicted through brain scans and changes in writing samples .

Such articles tantalize readers, but are these claims of medical breakthroughs real or illusory? The reporting in these news articles was no better or worse than the many others published, but they can be used to illustrate the difference between medical advancements and the much-hoped­for breakthroughs in finding the cause of, effective treatment for, and potential cure for Alzheimer’s disease. Interpreting such announcements with a critical eye can reduce unrealistic public expectations and still allow hope for the future .

There are over four million people in America who have a dementing illness. According to the Alzheimer’s Association, that number is expected increase to fourteen million within the next fifty years unless a cure or prevention is found. If only five family members are affected for each Alzheimer member, then as many as twenty million Americans may now be facing problems of coping with one of these dreadful diseases. If the physicians, nurses, psychologists, and other professionals who provide care to this special population are added, then the magnitude of the problem and the cost to our society becomes readily apparent.

More than 70 percent of people with Alzheimer’s disease live at home. Research suggests that over 75 percent of the home care is provided by family and friends. The additional care necessary generally costs family members $6,000 to $12,000 a year, just to care for the patient at home .Most family members with Alzheimer’s disease remain at home until the last and most severe stages of the disease. Nursing home care is very expensive, ranging from $40,000 to $70,000 a year. Neither Medicare not private health insurance covers the long-term care most patients need. it has been estimated that the average lifetime cost per patient is $174,000. The financial costs of Alzheimer’s disease are enormous, but the emotional and physical costs of the disease for the caregiver are of even greater magnitude and are impossible to measure.

Alzheimer’s disease is a progressive, degenerative brain disease. which means that with each day that passes the inflicted person becomes more impaired. This degenerative process will eventually result in death, but usually not until the individual has lost his memory, his use of language, his ability to dress or feed himself, and his personality. From the time of diagnosis, the lifespan may range anywhere from three to twenty years. The average is eight years. Men and women are equally affected. Most people affected with Alzheimer’s disease are older than age sixty­five. Thus the spouse, who is most frequently the primary caregiver, is often of an age that his or her own health and physical strength may be waning. The caregivers of Alzheimer patients will have ever-increasing demands on their time and their emotional strength. Eventually, individuals with Alzheimer’s disease will need twenty-four-hour care. They will need to be dressed, fed, and assisted with toileting. The patient will not recognize his caregiver and may not be able to communicate at even the most basic levels. The patient may wander and get lost. Night and day frequently become confused, with the patient wandering around the house throughout the night, significantly interfering with the sleep of the care giver. Disturbances in behavior and mood are certain to occur. The Alzheimer patient may become paranoid and aggressive, exploding in angry outbursts, perhaps accusing the caregiver of stealing his shoes or other items that he can no longer find. Clearly things will be much different in this new type of family.

It should not be assumed that nursing homes will necessarily have adequate behavioral management programs. In fact some homes specifically forbid behavior modification despite evidence that such programs can offer very effective and humane means of managing behavior problems. The absence of such programs generally indicates a lack of personnel trained in behavior modification principles, indeed, it is important that behavior modification programs be monitored by a licensed psychologist or other mental health professional specifically trained to administer them. Although some nursing homes are beginning to establish such programs and institute staff development needs, there remains a gap between what is being provided and what is needed. Many homes continue to depend on out­side sources for assistance in providing specialized programs for their staff.

Practical and useful education programs are required for those staff members assigned to work with the Alzheimer patients. Coping with behavioral problems of Alzheimer patients requires skill, commitment, understanding, and patience. The staff must be willing to adjust to patient needs and change the programs and the environment to accommodate patient requirements rather than try to change the behavior patterns.

The lack of knowledge regarding the intellectual impairment caused by the disease and its various phases presents the staff with a great number of management problems. A basic fact that all staff should understand but often do not, is that Alzheimer’s disease does impair memory, reasoning, judgment, and orientation-and it is irreversible. The nursing home staff also needs to be trained in how to handle such symptoms as depression, confusion, bewilderment, and emotional instability.

Training of staff members should be an ongoing process. This can be accomplished by using the various phases of the disease as guideposts for planning and conducting training sessions and in-house workshops. The staff needs to know what takes place in the life of the patient in the pre­diagnosis period. This provides an opportunity to link the patient’s present behavior with previous patterns of behavior. For example, in one nursing home, the nurses were having a very difficult time getting one of their favorite patients to wear shoes. Much time and effort was expended getting Mr. R. to put on his shoes. When staff discussed this problem with his wife, it was learned that he never wore shoes at home throughout their forty years of marriage. Understanding previous behavior certainly facilitated their understanding of his present behavior.

Knowledge of the patients’ general decline will help staff members better understand the drastic changes that have already taken place in the lifestyle of the patients and their family members. The last two phases, severe memory loss and total collapse of self-management skills, are usually the point where nursing home staff enter into the life of the patient. Special training regarding these crucial periods is essential if the staff is to understand and improve its skills in working with the patients, their families, and the larger community.

Although half of all dementias are caused by Alzheimer’s disease, it is critical that other possible causes for impaired functioning in the elderly patient be evaluated and ruled out before caregivers and/or family members attempt to undertake enhancement programs. As the public becomes more aware of Alzheimer’s disease, the danger of non­professionals making a diagnosis increases, and with it, well-intentioned but often inappropriate attempts or suggestions at management. If appropriate medical investigation is conducted, this should not be a problem, since a diagnosis of Alzheimer’s disease in part depends upon a systematic exclusion of other dementing diseases, some of which are treatable or reversible.Even where Correct diagnosis is made, the caregiver should be alert to changes in the patient’s thinking, speech, or emotions that may not be a true component of Alzheimer’s disease. In some cases, such changes may reflect other, modifiable conditions, which, if taken into account, would reduce some of the confusion or disorganization that occurs in the demented patient. For example, demented individuals are vulnerable to delirium, which typically can be recognized as a sudden and obvious change in the patient’s normal mental functioning. Delirium may have symptoms that are very similar to those of Alzheimer’s disease, e.g., impaired alertness, slow and confused thinking, and difficulties in shifting or maintaining a focus of attention. However, these symptoms can result from various physical ailments or reactions to medicines.

In addition, depression mayor may not be present in the Alzheimer patient at a particular point in time. When present, depression can make impaired memory function even worse, reduce the patients interest in the surrounding environment and in others, further compound difficulties in regulation of sleep, and even result in a full-scale withdrawal into a completely incapacitated vegetative state.

These considerations reflect that while Alzheimer’s disease is progressive, the rate of progression and the way that the impairments show themselves may vary greatly across individuals and may be influenced by factors such as depression and toxic drug reactions. Though many strategies will be discussed here, it will be important to keep in mind that any management approach involves frequently changing interactions between the Alzheimer sufferer and the relative or caregiver. This is because the condition may vary from day to day and worsen over time.

More complicated problems attendant to Alzheimer’s disease involve open or hidden conflicts between two or more of the patient’s relatives. Frequently, such conflicts have their roots in the past relationships of the individuals involved.

Open conflict in families of Alzheimer patients has been found to consist of three types of disagreements -

1. Overt disagreements about the definitions of Alzheimer’s disease, for example, how serious the patient’s memory loss is, and how much he or she is still able to do safely.
2. Expressed disagreements concerning family members’ attitudes and behaviors toward the Alzheimer patient, such as not spending enough time with the patient, or not caring for the patient.
3. Expressed disagreements about family members’ behavior and attitudes toward the primary caregiver, for example, not showing enough appreciation to the caregiver.

Hidden conflicts may involve -

1. Unstated disagreements about any of the above issues.
2. Unexpressed hard feelings about any of the above issues .
3. Unresolved tensions from earlier years, which the Alzheimer patients can no longer keep in check because of their impairment and changed roles in the families.
4. Tensions inherent in family members’ changing relationships; for example, with the impairment of the patriarch, two or more of the grown children may compete for dominance within the extended family.

As examples of role changes within the family, consider that -

1. The patient may have been the confidante of family members.
2. The patient may have played the role of maintaining contact between, or peace among, other family members.
3. The patient simply may have been the one who managed the finances or took care of the house, and no one else can or will take his or her place.

Other dysfunctional patterns brought about because of the patient’s impairment include -

1. Protection of certain family members from full knowledge and realization of the extent of the patient’s impairment;
2. One family member voluntarily taking over the whole burden of caring for the patient, shouldering the guilt for the entire family, who avoid the patient.

Caregivers do, in fact, cite family conflict as a major problem, second only to the strain of caring for the Alzheimer patient. Compared to spousal caregivers, adult children caregivers are particularly likely to report open conflict, especially with their siblings. Although the absolute level of conflict was not reported to be high, research shows that conflict is associated with caregiver depression and anger. Depression is related to lack of support and appreciation, while anger is related to conflict over relatives’ attitudes toward the patient.

On the other hand, good marital communication, strong family support (including emotional cohesiveness), role adaptability among family members, and ability to reframe or reinterpret family goals are associated with lowered stress and more satisfaction.

It is important that the dignity of persons in the early stages of Alzheimer’s disease be maintained by involving them in the decision ­making process that addresses their present and future welfare. As long as Alzheimer patients retain their decision making capabilities, they should be encouraged to make a great many personal decisions involving day-to­day living. In addition, provision can be made for the future when persons with Alzheimer’s will be unable to make rational decisions. The delicate task of determining present wishes concerning future health care, participation in research, the choice of a nursing home, and the manner of care as death approaches ideally needs to be addressed while the person retains competency. Many of the ethical dilemmas faced by families and caregivers regarding the care of persons in the later stages of the disease could have been anticipated if the patient’s wishes had been determined prior to the onset of in competency. If one waits for such discussions to take place after Alzheimer’s disease has been diagnosed, the patient may not be able to comprehend fully the questions at hand. Patients may be totally unaware of their cognitive decline. A lack of awareness makes decision making about unrecognized likelihoods quite problematic. It is perhaps more realistic for such concerns to be discussed prior to the onset of any catastrophic illness.The involvement of the person with Alzheimer’s in making decisions concerning future care is an undertaking that requires tact and sensitivity. Making provisions for the future should not deprive a person of the hope needed for day-to-day living. One must recognize the prevailing reluctance of our society to discuss the types of care or medical interventions we would desire in the final stages of our lives. A contemporary desire for a sudden and anticipated demise is often thwarted by modern medical technology, the advent of which forces us to analyze the essentials of a good death and to embrace the “ars moriendi” (art of dying) wisdom of earlier centuries. In other terminal illnesses, such as cancer, the competent person can make treatment choices throughout the progression of the disease. Those with advanced Alzheimer’s disease lack the ability to give such directions. It seems appropriate that a mentally competent adult should determine the essentials of humane care in the later stages of the disease, including specific directions with respect to measures appropriate as death approaches. The desirability or undesirability of heroic measures can be determined by the competent person.

Specific directions about food and fluids often determine when and if artificial feeding is introduced. It would seem appropriate that basic nat­ural satisfactions like eating and drinking should be maintained to the very end for the person with Alzheimer’s disease. Human dignity is best preserved through self-feeding or hand-feeding by another. The introduction of tube-feeding can sometimes be the ultimate indignity inflicted on demented persons who have no essential need for it. Understaffed institutions may introduce such procedures in the interest of cost effectiveness and because it is covered by insurance as a part of skilled nursing care. Thoughtful though painful reflection by Alzheimer patients and their caregivers on what constitutes humane care in the later stages of the disease may rescue many a victim from technical forms of care, and assure that compassion will be the primary concern.

Long-term care institutions play a critical role in the provision of humane care for many persons with advanced Alzheimer’s disease. Per­sons in the early stages of the disease are very often able to determine their own futures. Official power of attorney may provide legal assurances that their wishes will be respected. Family members may struggle to respect the wishes of their loved ones; nursing homes, however, determine if such provisions are realized. It is essential to involve competent persons in the selection of health care facilities that will guarantee humane surroundings, humane care, and respect for the patient’s expressed wishes. The presence of a Code of Ethics within the institution and the availability of policies and guidelines with respect to clinical decision making are important considerations in choosing an appropriate facility . Assurances that the final stages of one’s life will be spent in humane surroundings could add immeasurably to the quality of life enjoyed by a person in the early stages of the disease.

The involvement of Alzheimer patients in research activities has attracted most of the recent ethical discussion. The ability of persons in the early or middle stages of the disease to make informed decisions concerning their participation in research is upheld by many ethicists, gerontologists, and legal experts. The present ability of persons with the disease to acquire, retain, process, and act on research information that is appropriately communicated becomes central to the notion of informed consent. It would also seem appropriate that competent persons could consent to continuing in research situations during and after the onset of in competency. Guarantees should exist, however, that the actual research procedures would not violate individual dignity, expose the person to unnecessary risks, or greatly distress the patient. Institutional Review Boards for the Protection of Human Subjects (IRBs), or their equivalents in nursing home situations, should ensure that adequate protection is afforded persons involved in research and that adequate policies and guidelines spell out this responsibility. Research into the nature of the disease is important, and progress in caring for and treating persons with Alzheimer’s is intimately linked to research. Progress, however, is an optional goal and is not worth achieving if individual worth is the price that must be paid. Researchers have an awesome ethical responsibility in assuring that their attitudes reflect respect for the personhood of demented people.

The decision making carried out by persons in the earlier stages of the disease occurs in a familial setting. The decisions made by the persons with the disease are often shaped by the advice of family, friends, and health care professionals. The range of options available to Alzheimer victims is often defined by the ability and willingness of family members and health care professionals to discuss the options and to implement whatever is decided. Meaningful dialogue concerning present and future care is both challenging and rewarding for the patient and the caregiver during the early and middle stages of the disease. It calls for the exercise of ethics in its highest human form because it represents the application of the highest values to the care of human beings.

A caregiver has suggested that a meaningful religious ritual could mark the passage of a person from the semi competent stage to the demented stage, from the home to the nursing home. Such a ritual would express a belief in the dignity of the person, would give thanks for the blessings of the person’s life with special reference to the meaningful times enjoyed since the onset of the disease, and would contain a commitment to the care of the person in the new surroundings. The involvement of competent persons with family and caregivers in planning such life transition rituals could give meaning to an event that is often surrounded by guilt and other negative feelings. Perhaps such a ritual could focus attention on the duties and obligations most appropriate to the care of the persons in the later stages of the disease. In embracing the pain of such decision-making, we might learn the deeper meaning of our service.

People with Alzheimer’s disease have many problems communicating with others. Although these communication problems involve some deficits in their speech and language, it is not possible to discuss speech or hearing problems as they relate to communication without also examining the relationship between speech/hearing and language.

Physiologically, speech can be considered the result of the appropriate use of the lips, tongue, teeth, and vocal cords to produce sounds. The pure mechanics of speech (making speech sounds) can be accomplished without imparting any information to the listener, especially if the speech sounds have no meaning. Choosing the desired words and ordering them in a fashion that will accomplish the intended meaning involves language.The symbols that are used during oral communication are words. Even if of the words of a sentence are produced clearly and concisely, no meaning can be derived if the sentence is not organized in a logical fashion with words that conform to the speaker’s intended mental image.

In much the same way, hearing involves not only the basic reception of sounds but also the processing of these acoustical items in a fashion .that matches the perceptions with meaningful information in the brain. It , quite possible for a person to hear everything that is spoken on a pure awareness or sensory basis but not derive any meaning or symbol association from these sounds. Therefore, the comprehension and understanding of a spoken message is equally dependent on not only the awareness of all of the acoustical elements of what was spoken, but also the mental organization of the speech sounds and the brain’s association of these sounds with meaningful linguistic symbols. For example, a person might hear every component of a message that is being presented in Chinese but be unable to understand what is said. The person’s hearing acuity is adequate to perceive all of the components of the message, but no association can be made between the auditory perception and any meaningful information.

Effective communication must involve both a speaker’s articulation and the hearing of the listener. The speaker must produce the words correctly and organize them in an appropriate fashion. The listener must be able to hear all of the components of the spoken message and be able. associate meaning with what is heard.

Most individuals will experience some type of communication problem during the aging process. As a person ages, a number of natural of natural changes occur that reduce sensory acuity. This gives rise to less precise communication. After the age of sixty, individuals generally see and hear less than in their youth. Sensory decline is expected with age and not considered abnormal unless such deficits are major. For example, while a certain amount of hearing loss is considered normal as one grows older, acquired deafness is not considered a normal factor accompanying old age. Also it is not unusual to wear glasses (or require bifocals) as one ages, but total loss of sight is abnormal.

Hearing Impairment

One of the expected changes that occur during normal aging is a decrease in hearing acuity. The term used for hearing loss associated with the aging process is presbycusis. This impairment is the product of many factors heaving to do with what the individual’s condition and the environment to which he or she has been exposed. Some contributing factors include noise exposure, toxic substances, hypertension, vascular insufficiency, and anatomical changes in the hearing system. In reality, presbycusis relates to numerous disorders under the category of hearing loss resulting from the aging process.

The average person affected by Alzheimer’s disease will also experience presbycusis. Therefore, it is to be expected that the individual will develop some high-frequency hearing difficulty and problems in understanding speech. Those with high-frequency hearing loss will have numerous problems understanding when in noisy situations. Therefore, when talking to a person who has Alzheimer’s disease it is always wise to select a quiet environment and reduce the rate of speaking to allow greater time for the patient to understand what is spoken.