Caregivers report that one of their greatest needs is for emotional support, second only to the need for time off. Many have no one to talk to about the problems they face in caring for a demented family member. The guilt, loss, and grief are especially difficult to express. Caregivers frequently feel that others do not truly understand the extent of care required. Visits from other family members greatly ease the sense of bur­den. Family members and friends are by far the most common sources of emotional support, although support groups and professionals may assist in relieving feelings of isolation.Perhaps the most important and valuable coping strategy is the arrangement of an adequate amount of time off to run errands and to engage in recreational and social activities. The research is quite clear that individuals who do not obtain a sufficient amount of time away from the responsibilities of caregiving feel a much greater sense of burden and have less success managing their emotional and physical health. Respite care and day care are valuable in this regard. Although community respite day care have been difficult to find in the past, many cities now have excellent day care programs specifically designed to meet the special need of Alzheimer patients. If your community does not offer such services, perhaps your local Alzheimer support group can help to develop special day programs

In the early stages of Alzheimer’s disease, the person is able to both perform self-care activities and function socially. Initially, changes in behavior may be subtle and infrequent. During this stage the person may deny the presence of any abnormality and may try to cover up his behavior with excuses. These changes are often attributed to other physical or mental problems. As time progresses the signs and symptoms become more frequent and are noticed by family and friends. The once quiet and friendly person may exhibit swings in mood and outbursts of anger. Tasks that were simple, such as cooking, playing cards, and driving a car, become difficult. There is difficulty concentrating, making decisions, and maintaining coordination.

As the disease advances, the person’s attempts to cover up for the behavior become more difficult. Sleep may be interrupted and the person may experience hallucinations. In addition, safety becomes a concern because of restlessness and tendencies to wander off, especially at night.

The lack of ability to function independently is characteristic of the final stages of the disease. Profound weight loss, related to impaired intake of food and fluids, is sometimes noted. The activities of daily living, such as hygiene and elimination, can no longer be controlled. In addition, the inability to recognize self, family, and friends may contribute to feelings of anger and frustration.

The story of a woman who was being examined in court for possible jury duty. She looked up at the judge and said, “I am sorry, your honor, I can’t serve on the jury. I don’t believe in capital punishment. ” “Maybe you don’t understand,” the judge said, “this is a civil suit brought by a wife to recover $5,000 of her money spent by her husband on gambling and other women. ” “Oh,” she said, “I’ll serve on the jury, and I could be wrong about capital punishment!”This humorous story points out that ethical convictions may vary with respect to individuals and the specific circumstances. Most people, however, hold to prevailing ethical principles that assist them in making decisions. The ethical considerations which un gird the humane meanings of persons with Alzheimer’s. Such considerations challenge our society to support adequately families and health care personnel devoted to the care of persons with the disease. Individual, institutional, and societal values coalesce in developing an ethical response to the human dimensions of Alzheimer’s. Here Thomas F. Mc Govern, an ethicist with a background in counseling and theology, describes a framework for ethical decision making with regard to the care of a person with Alzheimer’s disease.

The right to self-determination while one is competent and the right to humane care throughout the course of the disease are of vital interest to victims of Alzheimer’s disease, their families, and their caregivers. The principle of justice, too, is of great importance because it calls for the fair treatment of persons experiencing the disease. Ethical values must provide a theoretical and practical basis for social attitudes, which espouse the essential well-being of persons whose ability to care for themselves tragically declines as the disease progresses.

The ethical issues that pertain to the care of persons with Alzheimer’s disease embrace at least three broad areas of concern. The first addresses the willingness of our society to provide adequate health care for Alzheimer patients. The second area of concern deals with the right of such persons to direct their lives while they are competent and to have their expressed wishes respected when they become incompetent. The third area of concern focuses on the ethical principles that guide families, caregivers, and institutions as they care for the Alzheimer patient throughout the progressive stages of the disease.

The Functional Rating Scale Symptoms Of Dementia:

This scale was developed by J. Thomas Hutton and his associates to measure changes in everyday behavior, such as eating and dressing, that appeared to be most noticeably affected by the disease. The scale is included here to describe various behaviors that can be expected to change as the disease progresses. For example, in the early stages of the disease, the patient may have no difficulty eating with the appropriate utensils. Later, eating with utensils is accomplished with great difficulty, and eventually the patient will need to be fed.

Rate of progression of disease:

Scores on the Functional scale may range from 0(no impairment) to 42(severe impairment). In a small but interesting study conducted by Dr. Hutton and his colleagues, fourteen Alzheimer patients were monitored over two years.

Functional Scale scores were measured every six months throughout the two-year period. At the beginning of the study some patients had only mild impairment (functional Scale scores of less than 21), while in others, the disease was in its more advanced stages (Functional Scale Scores of greater than 21). This study found that Alzheimer’s disease caused significantly more impairment in functional ability at each time of measurement. Thus the disease progresses at a relatively stable rate. It would be uncommon, for example, for someone to go for over six months without showing some obvious decline in ability to respond to his environment.

Nursing Home Placement:

During this study, twelve of the fourteen. Patients were placed in nursing homes by their families. It was discovered that at the time the families decided that they were unable to care for their Alzheimer family member at home, the patient had scores on the Functional scale in the low 30s. In this study, individuals who had moderate impairment at the beginning of the study were typically placed in nursing homes approximately eighteen to twenty-four months later. Individuals who were more severely impaired at the beginning of the study were typically placed in nursing homes within six months to one year.

There is much variability in the rate of progression of the disease for individual patients. Although life expectancy following the onset of Alzheimer’s disease is generally five to ten years, this time may vary widely. The estimates provided here should serve only to aid in planning for eventual nursing home placement. There are sometimes waiting lists for preferred nursing homes, and financial planning will be necessary. Having an idea of when other families have found it necessary to establish residence in a nursing home may help the caregiver to plan for the best possible care for the Alzheimer patient at later stages of the disease.

Several key items on the Functional Scale -

(1) Incontinence

(2) Inability to speak coherently

(3) The need for assistance with bathing and grooming, were closely associated with institutional placement.

By the time an Alzheimer individual is unable to speak coherently, recognize his family, or tend to his own care, the disease has progressed sufficiently that constant supervision and care is required. Other health problems are likely to emerge, increasing the need for skilled nursing care. Once the Alzheimer patient is no longer able to communicate or recognize family members, it may also become easier for the family to let go and consider hospitalization as a more emotionally acceptable alternative. There is general1y no one reason that institutionalization becomes necessary. It is more typically the result of a combination of factors that lead to the primary caregiver becoming overwhelmed by the responsibilities.

The Functional sacle may be useful in gathering information regarding the patient’s level of functioning, but this information should be combined with all other relevant medical, psychological, social, and economic data before decisions regarding nursing home placement are made. The decision to place a loved one in an institutional setting is perhaps the most difficult decision a family must ever make. Despite the myth that older people are placed in institutions because the family does not care or does not want to be bothered, the opposite is more likely true. Its far more common that an Alzheimer victim is cared for in the home long after the caregiver has exhausted emotional and physical resources.

In between the early stages and the last stages of the disease there will be wide variability in the patient’s abilities. Good patient care and man agement can greatly ease the transitions that the patient and his family will go through. The progression of the disease cannot be modified medically and there is no cure. Education will be the most important means to provide the best quality of life for both the patient and his family. It will assist in making difficult decisions, in finding support from the community, in learning how to structure the home environment to reduce stress and improve patient functioning, in learning how to manage difficult behavior, and perhaps most significantly, learning the importance of taking care of the caregiver.

Developing a support group takes planning and commitment from the organizers. The first step we took to create our group was to contact the Alzheimer’s Association for information on the disease and on how to start a group. The association was very encouraging and supportive of our efforts. They continued to nurture us until we were able to become a full chapter of the Alzheimer’s Association. Since the beginning of our support group, the network of the Alzheimer’s Association has grown tremendously and now stretches across the country. They offer a wealth of information, training, and resources to anyone wishing to start a support group.I’ll never forget the first meeting of our support group. To my surprise there were twenty-six caregivers in attendance. Needless to say, we were very glad to meet each other. For some, it was the first time to talk to other caregivers, people who could really understand how it felt to see a loved one slowly slip away. For the first time, we knew we were not alone in our feelings. Our emotions of grief, anger, frustration, depression, and guilt were shared by others. We cried with each other and laughed at situations that could not be told even to friends, because they would not understand. From that day on, we knew we had brothers and sisters, of all ages and circumstances, who were together in their support of one another against an invisible but very real foe. In a very dark and lonely night, each of us became a small light for the other.

In the beginning I had a very narrow concept of just what our group would do. I had a vision of ten or fifteen people sitting in a circle and discussing problems. Occasionally we would have a speaker. Imagine my surprise when our group grew so fast that my husband’s computer had trouble keeping up with it. Everyone was hungry for information. I soon found that support groups do a lot more than sit around and discuss problems, although that remains an important part of each meeting. A good support group has many roles to play; each one is very important in our battle against Alzheimer’s disease.

Emotional Support

The first and most important role is that of giving emotional support to caregivers. The support group provides a safe and supportive community through which caregivers can share their thoughts and concerns. It is precisely this role of helping the patient by helping the caregiver that the support group can do best; and by helping each other, we help ourselves. Knowing others who have faced similar circumstances with courage and grace is also a source of encouragement to individuals who are afraid of what inevitably lies ahead. They discover new belief in their own ability to follow through on this difficult task.

It is hard to describe the transformation I have witnessed in caregivers who come to a support meeting discouraged and depressed and leave uplifted and strengthened. I have come to believe that you cannot be in the presence of courageous people without some of their courage becoming an inspiration for your own spirit.

Education and Information

Another important role of the group is to educate the caregiver. We have found that better understanding of the disease leads to an improved ability to cope with the many stressful situations that the caregiver must face each day. With more knowledge the caregiver feels in control and therefore better able to deal with each new stage. At this stage of research, very little can be done to change the course of this relentless disease, but we can prepare ourselves to face the inevitable decline of our loved ones. Acceptance is not easy, but it is possible. It is made less painful when the caregiver is better informed.

Caregivers also find that there is much knowledge to be gained from each other that will never be found in a book. When discussing problems, a group of caregivers can often discover new and creative ways of problem solving. Living under circumstances can many times cause caregivers to lose perspective of their situation. Talking a problem over with others helps them to see new ways of dealing with difficult situations. Once caregivers begin to think creatively, they are often better able to cope with new situations as they arise. The day-to-day tips that caregivers share with each other is an invaluable resource of the support group.

The support group also directs its members to community resources. Some groups develop resources of its own for use by its members. In most areas, there are few community services designed specifically for Alzheimer families, but there are some general resources that families can use if they meet the qualifications. The problem is that most families have no idea what resources are available and how the various systems work. The support group cannot possibly know every service in the community, nor can we counsel every family in need. Our job, however, is to know the agencies that can provide guidance through available social service systems. The Area Agencies on Aging can be valuable sources of information. Working with a professional social worker through such an agency, families are guided to state and federal services for which they qualify.

Advocacy

Another major role of support groups is advocacy. The public has finally become aware of Alzheimer’s disease, however, this does not mean that the problems Alzheimer families face in a system that is unresponsive to caregiver needs are fully understood. Caregivers are frustrated by widespread ignorance and neglect of their problems. It does not take long for the members of an independent support group to realize that the root of many problems can be found in local, state, and federal governments, all of which are largely unaware of the needs of caregiver families. Upon this realization, a support group may conclude, as our group surely did, that there is strength in numbers and that joining the Alzheimer’s Association was the most practical course of action. The Alzheimer’s Association is the organization leading the way for Alzheimer’s disease advocacy at the national and state levels. Locally, the support group becomes an advocate by presenting speakers for community organizations, writing letters, and discussing problems with neighbors. Each caregiver can become an advocate in some form.

Special Projects

Many support groups discover that special projects are well worth their time and effort. Projects can involve fund raising, education, advocacy, or patient and family services. There are several ways they can be beneficial. Special events offer opportunities for media coverage which draws attention to the services the group provides and also furthers public awareness. Projects can give caregivers the opportunity to feel they are taking an active role in battling Alzheimer’s. They are able to see themselves as a small part of a much bigger picture. For groups associated with the Alzheimer’s Association, local support groups are offered the opportunity to take part in their programs and projects as well as nationwide activities. Knowing your efforts are bringing about change can help care­givers to feel more empowered and less of a victim of this cruel disease.

Family members often ask if keeping the Alzheimer patient active involved, and stimulated can stop the progression of the disease. While such intervention cannot “cure” or halt the dementing process, patients who are kept active and encouraged to take responsibility for themselves may experience a greater sense of physical well-being, self-control, and involvement in the family. It is clear that people with Alzheimer’s disease cannot learn as well as before, because of the damage that has occurred to their brains. However, Alzheimer patients may be able to learn simple tasks and facts if they are repeated often enough. For example, demented persons who feel lost and confused in a new place can eventually “learn” to find their way around.What is important is that family members keep their expectations of the patient reasonable and accept that certain skills may be lost forever. Pressuring the patient to learn, or providing too much stimulation and activity, can result in an inappropriately intense negative emotional reaction and cause guilt and anxiety.

Individuals who do not have brain impairment are able to focus their attention on the most relevant information in their environment, ignoring what is unimportant. We are able to scan a room quickly to see who is in the room and what is happening. We note pieces of furniture and knickknacks, and we may be able to read a book and watch television at approximately the same time. Simultaneously, we take in information with our ears. We can listen to three kids, each asking for something different, be aware of the television show we are watching, and know that the baby is crying in the back room. All of this information can be taken in by focusing attention on what we are most interested in seeing, hearing, feeling, or tasting, and ignoring most of the other sources of stimulation.

For Alzheimer patients, who have difficulty focusing their attention, who forget even the most familiar of objects, and who have difficulty understanding speech and what is being asked of them, it is not surprising that going to a new place (or even familiar places) would be stressful and confusing. Imagine suddenly finding yourself in Hong Kong, where you know no one and cannot speak the language. Imagine how frightening that could be. What would you do in such a situation? Wander through the streets looking for something familiar? Perhaps find yourself asking the same questions over and over again? You might even become so frustrated that tears flow or you become angry.

What would help you feel more in control? Perhaps getting off the subway, going to a quiet park, getting away from all the strange sights and sounds would help reduce the anxiety and the restlessness. It would be reassuring if someone would communicate with you by slowly providing gestures, simple words, and maybe even pictures to help you understand where you are and what is happening.

Sometimes the most help we can provide the Alzheimer patient is finding ways to reduce unnecessary, unimportant stimulation, and providing very clear and focused information at an optimal level of intensity for the patient’s level of functioning. At times the Alzheimer patient may withdraw from stimulation and actually become under stimulated. The caregiver must become sensitive to providing appropriate levels of stimulation, drawing the patient in at times for active engagement, but being aware when the patient is becoming over aroused.

In the sections to come, we will attempt to show how to assess the patient’s strengths and weaknesses so that caregivers may determine what levels and type of stimulation and communication are appropriate. Our goal is to work within the patient’s range of capability, balancing stimulation, and breaking down (i.e., simplifying) activities so that the Alzheimer patient may continue to feel involved and somewhat in control of his or her destiny.

Caregivers Are Frequently Divided InTo Two Categories -

1.Primary

2. Secondary

A primary caregiver is typically the spouse who lives with the demented person. Although estimates vary, one survey reported that 55 percent of caregivers are spouses, 35 percent are adult offspring, 5 per cent are siblings, and the remainder are other relatives or paid providers of care. In this study, caregivers ranged in age from the late twenties to the early eighties, with the average age between fifty and seventy.

Due to the older age of many of the spouses, caregivers frequently face personal health problems and physical limitations that may increase the difficulty of caring for a demented individual who needs close supervision and assistance in most aspects of daily living. Following spouses, daughters of Alzheimer victims are the next most likely family members to assume the role of providing primary care. It should be noted that children of Alzheimer patients are typically of an age (thirty to fifty years) at which time they may have additional roles, such as childrearing, working outside the home, and other social and community responsibilities. These commitments to spouse and children are important; outside support may therefore be necessary to insure that the family retains the emotional resources needed for optimal growth and development.

Secondary caregivers, who are frequently other relatives, vary greatly in the amount of support and care that they are able to give. Not to be for gotten are the nurses and nurse’s aides who provide care for Alzheimer patients on a daily basis, either at home, at a day-care facility, or a nursing home or hospital. Staff burnout and turnover are major problems at institutions that care for Alzheimer patients. Stress, anxiety, and depression are common in these caregivers and cannot be ignored.

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.

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.

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.