Structurally, a nursing home should look more like a home and less like a hospital. What effort is made to have familiar belongings in the patient’s new home? Are patients permitted to have special pieces of furniture and bed covers from their homes? Are pictures permitted on the wall? Many families believe that if a nursing home looks good and smells good, it will be a good facility. An attractive building in a beautiful location can certainly make a good impression. However, there are other factors to be considered in addition to the facility’s appearance. Is the nursing home safe for Alzheimer patients? Have provisions been made to prevent patients from walking away from the home and/or becoming lost? Wandering is considered to be a major problem in nursing homes, those located in heavy traffic areas present additional management problems and can be dangerous for the patients.

Will patients have easy access to the places they will need to go restrooms, dining rooms, and activity rooms? Are there pictorial signs in easily observed places to facilitate the patient finding important places such as a restroom and perhaps his own room? For example, all restrooms might be painted orange with a picture of a toilet on the door. Perhaps the patient’s picture and name in large letters might be on the door to his or her room. When confronted with a corridor of many doors all of which look alike, the Alzheimer patient can become quite confused and frustrated.

Good housekeeping practices are essential. The simple effort of removing wastepaper baskets and locking closets can prevent problems for the patient. It is important to ask if the patient will be allowed to live in one room for a long period of time or are frequent moves likely? Frequent changes in the environment result in difficult adjustments for the Alzheimer patient.

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.

It proved helpful to listen attentively and to maintain eye contact while communicating with Mr. Jones. Approaching in a calm, pleasant manner, and speaking slowly and distinctly worked well to facilitate understanding. Ms. C. was advised to avoid confrontations when possible. Despite Mr. Jones’s poor ability to communicate, it was very important that Ms. C. continue to spend time with Mr. Jones, talking with him and helping him feel related to others.

Methods To Improve Communication

• Speak slowly and distinctly.

• Approach in a calm and pleasant manner.

• Keep directions simple: use simple words and short sentences.

• Listen attentively and maintain eye contact.

• Offer appropriate praise when meaningful statements are made.

• Avoid confrontations.

• Select a time of day when the person is relaxed, then engage in conversation.

• Call the patient by name, often response is forthcoming when the first name is used, at least until the last stages of disease are reached.

• Provide objects to assist with orientation (i.e., clocks, calendars, etc.).

The term dementia refers to an across-the-board decline in intellectual abilities. This is an acquired disorder as compared to disorders present at birth, such as mental retardation. Dementia is strongly linked to age. becoming progressively more frequent with advancing age and is assumed to be due to brain impairment.Dementia is not a diagnosis but a broad symptom complex and can result from a variety of causes. It mayor may not be reversible depending upon the underlying cause. The symptoms of dementia consist of disorientation, poor memory, reduced intellectual functioning, reduced judgment, and alterations in emotional background. Implicit in the definition of dementia is loss of everyday skills.

Brain Disorder

When Alois Alzheimer described in 1907 the disorder that now bears his name, he did so by describing microscopic brain abnormalities. These brain changes consist of neuritic (senile) plaques and neurofibrillary tangles. Neuritic plaques are believed to be degenerating treelike branchings of brain cells that may surround a central core of protein (amyloid). Neurofibrillary tangles are seen within brain cells and consist of a coarsening and thickening of the usually delicate filaments (threadlike tissues). Increasing numbers of neuritic plaques and neurofibrillary tangles correspond to increasing severity of dementia. They may also be seen in normal older brains, but in lesser numbers.

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.

Once a patient is suspected of having Alzheimer’s disease, comprehensive physical, radiological, and neuropsychological examinations will likely be performed by the attending physician. A full nutritional assessment may also be warranted at this time. Since Alzheimer’s disease is a slow, progressive illness, many patients will at first appear in excellent physical health. Severe dementia brought on by nutritional imbalances or deficiencies is rare, but some instances of mental impairment among persons over the age of sixty have been associated with lower-than-average vitamin intake or an inability to utilize certain vitamins. A physical examination and nutritional assessment will likely exclude the possibility that the dementia has a dietary origin.

The gradual mental decline usually associated with Alzheimer’s disease is typically accompanied by physical decline of the patient. Such decline is the combined result of neuromuscular impairment, a reduction in ability to exercise, and inadequate nutritional intake. Confusion, gradual loss of short-term recall, and a shortened attention span may result in the Alzheimer patient not completing or even skipping meals. Selecting the proper eating utensil may become a difficult and frustrating mental task. The caregiver will eventually have to make what appear to be simple decisions for the Alzheimer patient.

Meals skipped, excessive irritability, and reduced sleeping hours over extended periods of time may place the Alzheimer patient in a continual negative calorie condition. Under such eating conditions, protein-calorie malnutrition may occur, and the patient will begin to lose weight. It seems reasonable, therefore, that attention to the patient’s weight and caloric intake are the first defenses that a family can take against the physical deterioration associated with Alzheimer’s disease.

Reduced caloric intake and weight loss lead to reductions in both vitamin and mineral intake, even if smaller amounts of a balanced diet are eaten by the patient. Protein-calorie malnutrition hastens vitamin/mineral deficiencies unless a vitamin/mineral supplement is provided. However, there are no data suggesting that vitamin/mineral supplements either retard or accelerate the course of Alzheimer’s disease. Caregivers should consult with the attending physician concerning use of a vitamin/mineral supplement.

Protein-calorie malnutrition is frequently encountered in elderly patients in hospitals and other institutional settings as a condition secondary to the primary disease. Inadequate food intake frequently arises from mental decline, loss of physical dexterity, difficulty in swallowing, and the need to be spoon-fed by a caregiver. Without necessary caloric intake, vitamin/mineral deficiency can lead to impairment

of the immune system or the blood. The immune system is responsible for combating infectious disease, including pneumonia, which occurs frequently in Alzheimer’s patients. Impairment of the blood system may result in anemia, thereby further weakening the patient.

During the advanced stages of Alzheimer’s disease, the patient’s family may be confronted with the decision to provide nutritional support therapy by nasogastric tube or total parenteral nutrition (TPN), administered through a tube into the esophagus or stomach. Such decisions, often difficult to make, usually reside with family members after consultation with the attending physician.

Protein-calorie malnutrition associated with vitamin/mineral deficiencies and dehydration are frequent consequences of Alzheimer’s disease. Vitamin-mineral deficiencies are readily preventable through the course of the disease by providing solid or liquid supplements. Dehydration can be prevented by noting sufficient consumption of liquids. Protein-calorie malnutrition is more difficult to prevent. Increased family awareness of nutritional aspects, professional assistance, and more attention to the nutritional management of the Alzheimer patient may slow the rate of mental and physical decline of the Alzheimer patient.

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.

The successful establishment and development of specialized nursing home services for Alzheimer patients is greatly influenced by the attitude of management and staff. A nursing home program will not extend beyond the shadow of its leaders. It is essential that the administrator be committed to developing better services for the Alzheimer patient.Two schools of thought exist among nursing home administrators regarding separation of the Alzheimer patient from other patients. One approach is based on the concept that all Alzheimer patients should be grouped together in a separate unit. This arrangement has advantages from the standpoint of control, convenience, and better supervision. Such units can be designed to provide security and meet many of the specialized needs of the patient. Critics of this method quickly point out the need for those afflicted with Alzheimer’s to socialize with other patients.

The second concept-nonsegregation of the Alzheimer patient allows those suffering from Alzheimer’s disease to be integrated into the regular program of the nursing home. Too frequently this arrangement does not provide adequately for the special needs of patients. The general trend is to establish separate units with specialized programs and trained staff. However, the success of Alzheimer programs will mainly be deter mined by the staff and how well they are trained. Nursing homes that seem to be the most effective are those where the staff believe that constructive things can be done for and with the Alzheimer patient. Families need to look for those homes that are flexible and open-minded in their approach to the patient. It is extremely important that the staff demonstrate understanding and affection toward Alzheimer patients. When visiting a nursing home, notice the interaction of the staff with the patients, Are patients introduced by name? Does the administration have someone on staff to show the facility, to point out special features and programs designed for Alzheimer patients, and to answer any questions that might arise? Are there specialized activity programs for Alzheimer patients?

Standards

Nursing homes must comply with state and local laws, whose standards have been developed for the care and protection of the patient. Each state has its own survey system for assuring that patients receive adequate care. Until recently the process focused on structural requirements more than on patient outcomes. This is beginning to change with new guidelines being developed to assess the quality of care provided by facilities. Standards of care include such things as ensuring that patients are receiving the specific diets ordered by their doctors, that grooming meets acceptable standards, and that medications are being dispensed properly. Accreditation reviews are very thorough, and generally take a full week to complete.

Part of the process of selecting a nursing home for Alzheimer patients involves determining that the prospective home complies with existing state regulations. Inquiries should also be made into what rating the home has been given, if a rating system exists in the caregiver’s state. Is the home considered to be superior? These questions can be answered by the nursing home administrator.

When visiting a home, ask the administrator for the Bill of Rights for Residents of Nursing Homes, which all nursing homes are required to provide.

The Bill of Rights should include the following principles -

1. The rights of Citizenship
2. The right to Dignity
3. The right to Privacy
4. The right to Personal Property
5. The right to Information
6. The right to Freedom
7. The right to Care
8. The right to Choose
9. The right to Residence
10. The right to Expression

Most states currently do not have separate standards and guidelines for the development of specialized nursing homes for Alzheimer patients. Some states are just beginning this task. The development of standards for Alzheimer facilities requires special consideration due to the uniqueness of the disease. The traditional programs will not suffice for the Alzheimer patient. There are different phases of the disease, and required treatment varies in each phase. A progressive program must be put in place, one that will allow for the various changes that take place in the patient’s behavior.