Journal of Gerontological Nursing

DEMENTIA-EDUCATING THE CAREGIVER

Laurel V Lipkin, RN; Kathleen J Faude, MN, RN

Abstract

It is estimated that Alzheimer's disease (primary degenerative dementia or senile dementia of the Alzheimer type) affects approximately 3 million people in this country. Memory loss is often the first symptom, followed by language problems or personality changes. Later, the victim has trouble making appropriate judgments and may become incontinent. Seven percent of the 27 million people over 65 years are severely disabled by this disease. It has been known to strike as early as the 40-year age bracket and is estimated to affect at least 20% of people over 80 years of age. It is expected that the incidence of the disease will more than triple in the next 50 years, since people aged 85 years and over constitute the fastest growing age group in the United States.1

The key diagnostic feature is deterioration of previously acquired intellectual abilities of sufficient severity to interfere with social or occupational functioning in dementia. Memory loss is another primary diagnostic indicator; memory problems are often the first sign of dementia and remain a noticeable part of the syndrome until deterioration progresses to a point where memory is no longer testable. Impaired judgment is often an additional early sign of dementia, and the behavioral changes that result can be particularly disturbing to the victim's family when the presence of the disorder is not yet known. Apraxias are common in dementia and there is an increasing inability to perform activities of daily living, even though simple motor function is intact. Disturbed sleep patterns with insomnia, wandering during the night, and incontinence of urine and feces are also seen.

The majority of Alzheimer patients do not live in institutional settings; instead, they live at home as their illness progresses, placing more stress and pressure on family members to care for them.

Adult children often have to give up their own interests and activities to become primary caregivers to their parents. This may set off a number of emotional reactions, such as anger or guilt, which the adult children are left to deal with. In addition, families often have misconceptions and sketchy information about dementia. They frequently report that physicians have not given them adequate explanations about etiology or management.

To date, the main form of assistance for caregivers has been support groups. Most support groups have multiple goals, ie, to share concerns, clarify problems and roles, and develop coping strategies. Often, however, such groups have not been professionally led, and caregivers have gone into them without any preparation or orientation.

Recently, groups have included the goals of education and the provisions of information regarding community resources for family members.2·3 The need for information about etiology, symptoms, and the care of the demented elderly has increased as media coverage of the illness has grown and as research and clinical work have proliferated.

Background of Program

The UCLA (University of California, Los Angeles) Neuropsychiatrie Hospital has had in existence since 1977, a 20-bed, inpatient geriatric psychiatric unit. The unit focuses primarily on geriatric patients with neuropsychiatrie illness, most of whom are 65 years of age or older. These elderly psychiatric patients predominantly have diagnoses of depression and dementia. Although both diagnoses have proved a hardship for patients' families, those with dementia have been the most challenging. One of the major reasons has been lack of education given to the family regarding the disease and how to cope with the erratic behavior of the patient.

In response to family members' needs, the nursing staff on the unit planned and implemented family education/discussion groups which are held weekly. Since the inception of these groups five years ago, 200 family…

It is estimated that Alzheimer's disease (primary degenerative dementia or senile dementia of the Alzheimer type) affects approximately 3 million people in this country. Memory loss is often the first symptom, followed by language problems or personality changes. Later, the victim has trouble making appropriate judgments and may become incontinent. Seven percent of the 27 million people over 65 years are severely disabled by this disease. It has been known to strike as early as the 40-year age bracket and is estimated to affect at least 20% of people over 80 years of age. It is expected that the incidence of the disease will more than triple in the next 50 years, since people aged 85 years and over constitute the fastest growing age group in the United States.1

The key diagnostic feature is deterioration of previously acquired intellectual abilities of sufficient severity to interfere with social or occupational functioning in dementia. Memory loss is another primary diagnostic indicator; memory problems are often the first sign of dementia and remain a noticeable part of the syndrome until deterioration progresses to a point where memory is no longer testable. Impaired judgment is often an additional early sign of dementia, and the behavioral changes that result can be particularly disturbing to the victim's family when the presence of the disorder is not yet known. Apraxias are common in dementia and there is an increasing inability to perform activities of daily living, even though simple motor function is intact. Disturbed sleep patterns with insomnia, wandering during the night, and incontinence of urine and feces are also seen.

The majority of Alzheimer patients do not live in institutional settings; instead, they live at home as their illness progresses, placing more stress and pressure on family members to care for them.

Adult children often have to give up their own interests and activities to become primary caregivers to their parents. This may set off a number of emotional reactions, such as anger or guilt, which the adult children are left to deal with. In addition, families often have misconceptions and sketchy information about dementia. They frequently report that physicians have not given them adequate explanations about etiology or management.

To date, the main form of assistance for caregivers has been support groups. Most support groups have multiple goals, ie, to share concerns, clarify problems and roles, and develop coping strategies. Often, however, such groups have not been professionally led, and caregivers have gone into them without any preparation or orientation.

Recently, groups have included the goals of education and the provisions of information regarding community resources for family members.2·3 The need for information about etiology, symptoms, and the care of the demented elderly has increased as media coverage of the illness has grown and as research and clinical work have proliferated.

Background of Program

The UCLA (University of California, Los Angeles) Neuropsychiatrie Hospital has had in existence since 1977, a 20-bed, inpatient geriatric psychiatric unit. The unit focuses primarily on geriatric patients with neuropsychiatrie illness, most of whom are 65 years of age or older. These elderly psychiatric patients predominantly have diagnoses of depression and dementia. Although both diagnoses have proved a hardship for patients' families, those with dementia have been the most challenging. One of the major reasons has been lack of education given to the family regarding the disease and how to cope with the erratic behavior of the patient.

In response to family members' needs, the nursing staff on the unit planned and implemented family education/discussion groups which are held weekly. Since the inception of these groups five years ago, 200 family members have participated in the fourpart sessions. The positive responses have been validated by the high attendance and written replies on the evaluation forms.

The purpose of the group is to educate family members of dementia patients about the disease, management techniques, and community resources, as well as to provide members an opportunity to discuss problems and feelings encountered by the primary caregivers and other family members. The specific aims of the group are:

1. To present information to caregivers and involved family members about diseases that cause dementia, current diagnostic procedures, and directions in treatment research.

2. To instruct the caregivers in problem-solving and management techniques for the demented patient.

3. To provide an opportunity for discussion of feelings, problems, coping mechanisms, and problem-solving techniques for the physiological and psychological stress encountered by family members.

4. To identify and describe factors related to "burn-out" among caregivers, which can lead to their poor health or neglect and abuse of the demented patients.

5. To inform caregivers of community resources and their specific functions as they are available for the patient and the family members.

6. To discuss issues about placement, day treatment, ie, when, where, how, costs, and needs for conservatorships .

Initially, the majority of participants were related to geriatric psychiatric unit inpatients. However, as a result of listing in the local chapter of Alzheimer's Disease and Related Disorders Association newsletter, referrals were made to the group from various medical and psychiatric hospitals, clinics, and community agencies. The diversity of the membership continues to be encouraged because of its positive influence on the group. For example, someone who has a relative in the hospital can be very helpful to other family members by informing them of common problems that can be expected during hospitalization, as well as the advantage of inpatient care. There is also the added support when one of the members has to deal with the placement of a patient in a nursing home. Other members have helped to lessen the guilt of the family member by sharing some of their own experiences and issues they have had to deal with. The size of the group varies from five to 20 members, usually averaging 12. There is no set limit to the group size or the number of participants. Because there are often teenagers living with the affected person, they are also welcome to participate in the group.

Methods and Procedures

When the patient is admitted to the unit with a provisional diagnosis of dementia (primary degenerative type/ multi-infarct), the family is informed of the weekly education/discussion group and is invited to attend four consecutive meetings. They are also informed of the voluntary nature of the group and told that a choice of nonparticipation will in no way negatively influence the care that the family member will receive while on the inpatient unit. The education/discussion group meets weekly during early evening hours for 90 minutes. Topics are divided into four independent educational modules. Each module involves approximately a 30 to 40 minute lecture and a 30 to 40 minute question/answer discussion period. The modules are repeated in sequence every fourth week, so that families may enter the group at any point in the sequence.

Approximately one month before the session is to begin, members are informed of the date, place, and content of the modules. A follow-up phone call is made by a nurse who is the group leader one week prior to the first meeting, to personally invite those individuals who have expressed an interest in attending. Although initially all group sessions were led by a nurse, the groups have been modified to include leadership by other disciplines. A psychologist and social worker lead tbose sessions that focus on an area of their expertise (modules 1 and 3, respectively). Through interdisciplinary meetings with all group leaders, communication about family concerns is shared on an ongoing basis among the module leaders.

Group leaders use a variety of handouts with information, such as referrals to therapists, community support groups, day care centers, and listings of convalescent homes. The family care guide, 36 Hours a Day, is available at cost. The content of the modules taught by nurses has changed over the last several years. Initially, problems with ADLs were a major concern of family members, especially spouses. Communication difficulties, behavioral problems, and signs of increased confusion have become more important to the groups. Participants request more information on how to communicate with someone who is deteriorating and how to deal with the constant problems resulting from confusion.

When leading these sessions, it is most effective for the participants to sit in a circle in order to facilitate interaction and communication. The presenters discuss their topic, and the participation of group members is encouraged.

The needs of the family members are varied. The majority come to these classes knowing very little about the disease and how to cope with the "new" behaviors of the parent, spouse, or relative. Family members are generally more than willing to discuss their personal caregiving problems and listen to suggestions and ideas shared by other group members. The leaders do not focus on any individual psychological problems while the group session is in progress, nor do they focus on any one unique family problem. However, following the session the leader follows up on unique needs and concerns on an individual basis. For example, after therapeutic communication techniques are discussed, people share some of their individual experiences. Frequently there is a family member who is extremely anxious or frustrated, and states that "no matter what I try, nothing seems to work."

Although the group members attempt to make suggestions, often the individual is unable to accept the group's recommendations at this time. These group members appear to need time to accept their family member's illness and prognosis before they can actually utilize other member's suggestions. Referrals may be made by the group leader if it becomes evident that there are individual needs that require outside assistance.

The second module, led by a nurse, focuses on guidelines for the management of dementia patients in the home. A number of typical concerns are discussed in this session. Family members often complain about their frustration of being bombarded by the constant repetition of questions from the demented individual. Families often try to grasp for some complex reason for the person's behavior, especially when it becomes bizarre. Group members learn that, at times, this behavior may be the only way the individual can communicate his or her needs. Sensitization becomes a way of listening and eventually facilitates increased communication.

Denial of the illness and its cause is another common behavior exhibited by family members. This can often cost some families thousands of dollars as they go to numerous physicians, have unnecessary tests done, give the patient several different kinds of medication, drugs, vitamins, or foods in the hope of finding the magic cure. It is also in this session that many children talk about what it is like to "parent their parents, " often having to give up other parts of their life in order to do this (ie, social activities, having their parents live with them, or making frequent visits to nursing homes).

Often the transformation of a family member is seen as he or she comes to terms with the illness. For example, Mrs. R refused to believe her husband had Alzheimer's disease and would not place him in a nursing home. There were several instances where he had struck out at her, and at other times did not know who she was. Other family members shared similar experiences with Mrs. R. By the second session, Mrs. R looked more rested and said she had called an agency and had an aide sent to her home to spend two mornings a week with her husband so she could have some time for herself. In this session she talked more about her husband and what it feels like to have been married to him for over 35 years and now have him not always know who she is. She also said that she would "never put him in a home." During the third session, another man told the group his experience in putting his wife into a nursing home and at times still feel guilty for what he did. He also added that he knows it was the best decision, as he couldn't manage her at home any more. Mrs. R's son, who also had been attending the sessions with his mother, felt concerned as he saw his mother more depressed, anxious, and less patient with his father.

He also stated he couldn't cope with caring for "two patients. " By the fourth session, Mrs. R told the group that she and her son had started to look at nursing homes, realizing that she could no longer manage her husband at home. The group leaders stressed that this decision is very individualized from family to family. A nonjudgmental approach by the leaders is important to allow for free and varied expression of needs and decision making.

Often, family members' denial and unhappiness appears to be a necessary first phase in coming to grips with the illness. Proper knowledge can help to reduce anxiety as people learn to accept the reality of the disease and its consequences, and to take appropriate action.

Program Evaluation

Over the past several years we have seen many benefits of a group of this type and the important function of the nurse's role within the group. The nurse is usually the first to observe changes in a patient. These changes may include behavior, communication, mental status, or task performance. The nurse can utilize this data in formulating interventions for the care plan which later may be adjusted for another setting. It is the primary nurse's knowledge of the patient and ongoing contact with the patient's family that builds a foundation of support and guidance through a very difficult experience.

Another advantage is that professionals can often give more adequate information than a general support group. They can help to dismiss many of the fallacies people have heard about the disease, as well as give the most current information on community resources and experimental treatments. Having accurate information can facilitate a family's acceptance of the illness, and reduce anxieties fueled by ambiguity and misinformation.

Because of the flexibility of the modular format, families can repeat sessions or make them up if one was missed. This is not a support group, yet we have found the format to be sufficiently warm and open for many families to share their experiences and make the necessary changes in their lives. In general, family participants have been very willing to give suggestions to other group members.

Lastly, we find our group most valuable at the point of transition, when the family first learns that dementia is a possibility and before they are fully integrated into an ongoing resource network. Also, some families who are already quite familiar with the disease, use it as a refresher course to stay informed about new discoveries in diagnosis, treatment, and community services.

Summary

There are numerous benefits to education/support groups. One is an improved understanding of the disease, its cause and its course. The understanding often is a result of the teaching done by professionals as well as the constant sharing of other group members about patients in all stages of the illness. Adult children's fears are often decreased when they have more knowledge regarding the hereditary aspect of the disease and the research that is going on. By participating in a group of this kind, families no longer feel alone and are comforted just knowing there is someone else who shares the same experiences. They also begin to feel less guilty, angry, and frustrated when others share the same emotions. The information provided to the families continues to assist them in understanding the disease and anticipating changes in the course of the disease.

References

  • 1. Trubo R: The growing problem of Alzheimer's disease. Medical World News for Psychiatrists 1984; September 13.
  • 2. Zarit SH. Zarit JM: Families under stress: Interventions for caregivers of senile dementia patients. Psychotherapy: Theory, Research and Practice 1982; (19)4.
  • 3. Lowy L: Adult children and their parents: Dependency or dependability? Long Term Care and Health Administration Quarterly 1977; Fall.
  • ADDITIONAL READING
  • 1. Barnes, R.F.. Murray. A.R.. Scott, M.. Murphy. C, "Problems of Families Caring for Alzheimer Patients: Use of a Support Group," Journal of the American Geriatrics Society, 1981. Vol. 29. No. 2. 80-83.
  • 2. Beam, M.I. "Helping Families Survive," American Journal of Nursing, February 1984, 229-232.
  • 3. Charles, R., Truesdell, M.L., Wood, E.L., "Alzheimer's Disease: Pathology, Progression, and Nursing Process," Journal of Gerontolgical Nursing, 1983, Vol. 9, No. 2, 69-73.
  • 4. Clark, M., Gosnell, M., Witherspoon, D, Wallace, A., Robinson, T.L., Huck, J., Hager, M., Junkin, D., King, P., "A Slow Death of the Mind," Newsweek, 1984, December 3, 56-62.
  • 5. Davis, J.L., "Support Groups: A Clinical Intervention for Families of the Mentally Impaired Elderly," Journal of Gerontological Social Work, Summer 1983, Vol. 5, No. 4, 27-33.
  • 6. Farkas, S.W., "Impact of Chronic Illness on the Patient's Spouse," Health and Social Work, 1980.
  • 7. Fuller, J., Ward, E., Alison, E., Massam, K., Gardner, A., "Dementia: Supportive Groups for Relatives," British Medical Journal, 1979, June 23, Vol. 1, 1684-1685
  • 8. Hausman, CP, "Short-term Counseling Groups for People with Elderly Parents," The Gerontologist, 1979, Vol. 19, No. 1, 102-107.
  • 9. Hayter J. , " Helping Families of Patients with Alzheimer's Disease," Journal of Gerontological Nursing. 1982, Vol. 8, No. 2, 81-86.
  • 10. Hewes, CJ. , "Role of the Nursing Coordinator on a Geropsychiatric Unit," Journal of Gerontological Nursing, 1981, Vol. 7 No. 10, 607-609.
  • 11. Kiely, M. A. , "Alzheimer's Disease: Making the Most of the Time That's Left, " RN , 1985 , March, 34-41.
  • 12. La Rue, A. , "Memory Loss and Aging, Distinguishing Dementia from Benign Senescent Forgetfullness and Depressive Pseudodemenz," Psychiatric Clinics of North America, April 1982, Vol. 5, No. 1, 89-103.
  • 13 . La Vorgna, D. , "Group Treatment for Wives of Patients with Alzheimer's Disease," Social Work in Health Care, Winter 1979, Vol. 5, No. 2,219-221.
  • 14. Lazarus, L. W., Stafford, B., Cooper, K., Cohler. B., Dysken, M., "A Pilot Study of an Alzheimer Patient's Relatives Discussion Group," The Gerontologist, 1981, Vol. 21, No. 4, 353-358.
  • 15. Mace, N., Rabins, P., The 35 Hour Day, A Family Guide to Caring for Persons wiüi Alzheimer's Disease, Related Dementing Illnesses, and Memory Loss in Later Life. Baltimore: Johns Hopkins University Press, 1981.
  • 16. Mackey, A.M., "OBS and Nursing Care," Journal of Gerontological Nursing, 1983, February, Vol. 9, No. 2, 74-85.
  • 17. Maxey, L.B. , "Therapeutic Intervention with Families of the Confused Elderly," in Confusion Prevention and Care, ed. Wolanin, M.O., Fraclich Phillips. L.R. St. Louis: CV. Mosby Company, 1981. 350-370.
  • 18. Palmer, M. H., "Alzheimer's Disease and Critical Care Interactions, Implications. Interventions," Journal of Gerontological Nursing, 183, February, Vol. 9, No. 2, 86-90.
  • 19. Rabins, P.V., Mace, N.L., Lucas, M.J., "The Impact of Dementia on the Family," JAMA, 1982, July 16, Vol. 248, No. 3, 333-335.
  • 20. Safford, F., "A Program for Families of the Mentally Impaired Elderly," The Gerontologist, 1980, Vol. 20, No. 6, 656-660.
  • 21. Spar, IE.," Dementia in the Aged , " Psychiatric Clinics of North America, 1982, April, Vol. 15, No. 1, 67-86.
  • 22. Trubo, R., "The Growing Problem of Alzheimer's Disease," Medical World News for Psychiatrists, 1984, September 13.
  • 23. Zarit,S.H.,Reever,K.E-, Bach-Peterson, I, "Relatives of the Impaired Elderly: Correlates of Feelings of Burden," The Gerontologist, 1980, Vol. 20, No. 6.
  • 24. Zarit, S.H., Zarit, J.M., "Families Under Stress: Interventions for Caregivers of Senile Dementia Patients," Psychotherapy: Theory, Research and Practice, 1982, Winter, Vol. 19, No. 4, 461-471.

10.3928/0098-9134-19871101-07

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