Family involvement is recommended as a goal in the holistic care of patients with dementia who reside in long-term care institutions (Bergman, 1 986; Whitney, 1989). Residents with a diagnosis of dementia pose a challenge to nurses in delivering cane as nurses frequently encounter communication difficulties, behavior problems, feeding problems, and increasing levels of total patient care as the disease progresses.
In designing nursing interventions, it must be kept in mind that dedementia possesses a progressively deteriorating clinical course, and that anatomic and neurochemical changes occur in the grains of the victims. These changes are accompanied by impairments in cognition, sensorium, affect, behavior, and psychosocial functioning Buckwalter, 1988). Nurses can readily identify and address physical needs because cues to pain, discomfort, and nutritional deficits can often be detected by observation or physical assessment. However, psychosocal needs are considerably less obvious, and if patients cannot express their needs, nurses may need to seek other means of collecting psychosocial data in an effort to meet these needs.
Incorporating family members and the wealth of information they possess in the care of patients with dementia provides an avenue of collecting pertinent psychosocial data about the patient. Despite the general knowledge that family involvement in the care of patients with dementia is desirable, few studies document outcomes of nursing interventions that include active family member involvement in the planning of nursing care.
Dementia can result from Alzheimer's disease, vascular disease, a combination of Alzheimer's disease and vascular disease, normal pressure hydrocephalus, alcoholism, and other causes (Teusink, 1984). The majority of the literature on the care of patients with dementia focuses on patient deficits, problem behaviors, the care received from family caregivers, the burden of caregiving on families and, more specifically, the effect on and care of patients with Alzheimer's disease (Beck, 1988; Pajek, 1984; Stevenson, 1990).
Age and Automated Management information Classification
Nursing care of patients with dementia is focused on maximizing the functional ability of the patient and helping caregivers cope with the illness (Buckwalter, 1988; Wilson, 1989). Suggestions for nursing interventions focus on strategies to deal with problems with verbal and nonverbal communication, nutrition, physical functioning, safety, perceptual and motor difficulty, memory loss, and social isolation (Beck, 1988). Nursing strategies to reach patients with dementia include touch, facial expression, eye contact, voice tone, music, and novelty objects (Hoffman, 1985; Norberg, 1986). Several studies examined cognitive cuing as a successful way to reach patients with dementia and counter some of the memory loss, recall problems, and retrieval of information from long-term memory in tapping residual ability (Beck, 1987; Morris, 1983; Zarit, 1982).
Individualized care of patients with dementia can be accomplished by knowing previous interests and occupations and allowing family members to visit at any time and interact via phone at bedtime (BIeathman, 1987). Education and consideration of the family's need for adjustment at the time of admission to a long-term care faculty is encouraged (Mace, 1986). Finding out the family attitudes about care and their needs for outside support and for handling feelings about their family member's increased debility is recommended and requires close staff /family member communication.
Whitney and Pfohl (1989) indicate that families generally do not feel relieved of the caregiving responsibility despite out-of-home placement and continue to desire to spend time with their relatives. The family's perspective has value, family involvement is relevant to quality care, and family input needs to be sought as a vital aspect of mutual decision-making regarding care (Robinson, 1984). Active family involvement in a long-term care resident's treatment plan can use formal and informal strategies in a collaborative care concept that includes integrating ongoing care as well as preparation for inevitable death (Hinton, 1982).
Despite numerous descriptive and anecdotal articles about family involvement in the long-term institutional care of patients with dementia, no studies were found that examine the influence of collaborative nursing care with families who have a relative with dementia in longterm care or nursing home settings.
The purpose of this study, conducted at the Nursing Home Care Unit of a Midwestern Veterans Affairs Medical Center (VAMC), was to determine if family involvement in the planning and delivery of care would have a positive affect on residents with dementia. Nursing staff hypothesized that family members could be possible sources of valuable psychosocial data and that increased family involvement in the care would benefit the patient and family. Interpersonal theory provided the theoretical basis for this study (Peplau, 1952).
The study was conducted on a unit at a Midwestern VAMC that serves veterans requiring nursing home care. Twelve subjects on the nursing home unit with a medical diagnosis of dementia were randomly assigned to two groups: six subjects to the experimental group and six subjects to the control group. All subjects had families who visited the residents on a fairly regular basis. Subjects were matched on age and nursing care requirements, and were evaluated by the Automated Management Information System (AMIS) patient classification system (Veterans Administration, 1984) (Table 1).
In AMIS category I, nursing care is minimal; category ?? requires extensive or complete nursing care. Nurses evaluate patients on five major areas of basic hygiene, nutrition, elimination, mobility, and behavior. Thus, subjects in both the experimental and control groups primarily required complete nursing care in the five areas. The behavior description for a patient receiving a category III rating would be disoriented, combative and unresponsive, requires complete assistance in mobility, is incontinent, requires complete assistance or tube feeding in nutrition, and requires complete assistance in hygiene. All subjects were US veterans, white men, and had family involvement. The study was conducted over 12 weeks.
Two registered nurses contacted each of the experimental group subject's family members or significant others and requested a meeting. Selected family members, usually the spouse, of the experimental group agreed to participate. The nurse met with each experimental group family member in a quiet setting on the unit, reviewed the purpose of a nursing care plan, and explained how a care plan was used. Outlining the use of the information and the cooperation needed, the nurse then interviewed the family member using a semi-structured questionnaire format.
Questions asked of the family member about the patient included: What kind of hobbies did the family member have? What kind of music did he like? What did he really like to do? What were his values? What was really important to him (eg, religion, art, photos, hunting)?
Based on the information received, the nurse together with the family member developed the patient/family intervention designed to evoke positive responses from the resident. Consistent intervention strategies were based on the analysis of the data presented by the family member, and the individualized family involvement plan was co-created by the interviewing nurse and the family member.
Family members were asked to bring items of special interest to the resident. Based on the information received, the interviewing nurse also created subgroups of residents with similar interests so they could experience similar activities. The nurses informed the family member that responses of the resident and family concerns would be discussed at each family visit, as well as indicating that assistance would be provided to family members in implementing other strategies they thought of by the next visit.
The resulting information from subsequent visits and contacts with family members were noted and discussed by the nurses and was integrated into the nursing care plan with each visit. A copy of the completed plan of care was given to the family member, complete with nursing diagnosis, expected outcome with target dates for completion, intervention strategy, and evaluation information.
The nurses documented interaction on the nursing progress notes and completed a collateral family visit form (Veterans Administration Medical Center, 1989). The VA system maintains a documentation system of staff /family mental health collateral visits. The nursing unit structure was modified to allow the nurses conducting the research to be totally responsible for documentation and for directing ancillary care to residents in the experimental group. The nursing care plan for the experimental group was posted in the resident's room for access by all staff. The nurse and the family member met at the end of the 12 weeks to evaluate the experience (Figure).
The control group received regular nursing care protocol with no specific, other than usual, attention or involvement with family members of the residents.
The results of the study were evaluated based on the content of the care plan, number and kinds of interventions, number of as-needed medications used, number of collateral visits, and subjective comments from participating families.
The care plan was evaluated by examining the number of individualized nursing diagnoses. The number of physically related diagnostic categories were the same for both experimental and control groups. The number of psychosocially related diagnostic categories was slightly higher for the experimental group than for the control group. The total number of diagnoses for the six residents in the experimental group were 34, and for the residents in the control group it was 24, with some diagnoses used for more than one patient. Thus, more nursing diagnoses were used and developed in the experimental group.
Changes in Nursing Procedure With the Experimental Group
Goals of the experimental group were judged to be simpler and more attainable. Nursing documentation revealed more notes in the experimental group related to family emotional preparations, family security in the environment, family coping with the illness process, and a general psychosocial focus. The charting of the control group nurse's notes tended to be more physically focused.
Auditory interventions included the use of radio, television, tape recorders, and attending music therapy. For visual interventions, the six family members brought in mobiles selected by families to be reflective of the resident's interest areas. Families all brought picture albums, which were placed so that they were visible to the resident. The residents responded to stuffed animals brought by the families and fondled them; one resident even tried to feed the stuffed animal. Increased numbers of family members visited, including grandchildren.
Some families arranged social eating outings and purchased new clothes for the residents. Four of the six attended church and Bingo at the VAMC with their families. All families eagerly sought designated nursing personnel with each visit and shared family member needs and feelings with the nurses.
Control Group Interventions
Family involvement in the control group was low; no visual or auditory interventions were added to the resident experience by family members. Family members of the control group showed little or no interaction with the multidisciplinary team. Their visits were routine and little interaction between family members and residents was evident.
Physical cares or activities of daily living for both experimental and control groups made little or no changes during the study (Table 2).
Four of the six experimental group residents were taken off as-needed medication. Five of the six had a reduction in their routine medication and were maintained at a lower dose. The control group showed marked regression in three of the six members, with only one having asneeded medication reduced.
The experimental group qualified for six collateral visits, whereas the control group qualified for one collateral visit. Collateral visits are face-to-face VA staff interactions with a family member (other than the veteran) "for the purpose of obtaining information that will assist and support the care of the veteran" (Veterans Administration Medical Center, 1989). Because collateral visits are reimbursed by the VA system, the study also earned funds to make purchases for the veterans on the ward. Another added benefit during the course of the study was an increase of 221 more general family visits made during the 3-month study period, as compared with the general family visits made during the same period the previous year.
Appreciation of Care Letters
Appreciation of care letters were received from five of the six experimental group families. Selections from the letters included comments such as:
'The flowers were gorgeous. Next time I come, I will pin his birthday card and a few snapshots on F's bulletin board. ... I say 'yes' to what you are doing."
"You made me so welcome. ... I always left with the feeling he would be well taken care of while I was away."
"Thank you for the time and labor you used to complete the Nursing Patient Care Plan concerning A's needs and care to help him cope with his illness .... He feels secure, which gives me peace and comfort."
No letters were received from the control group families. Toward the end of the study, four of the control families asked the nursing staff if they could do the same things that the experimental families were doing. Arrangements were made to implement this intervention with all families after the study was completed.
Kind and Numbers of Interventions
The family and nursing collaborative care interventions procedure produced changes in the responses of the residents with dementia, as well as in the family and the nursing staff interacting with these residents and then1 families. Prior to this family intervention study, "most of the time families sat bewildered with the veterans and came to the staff for answers, asking what can be done to help the dementia victim, what medicines, what therapy would help" (Veterans Administration Medical Center, 1987).
In the experimental group, families were surprised that the nurses wanted to talk with them, but quickly became involved in the project tasks. Changes for the experimental group included an increase in psychosocial nursing diagnoses with planning and interventions to meet the problems, more extensive problem description, and an active focus on interaction and change in the nurse's notes. Family members individualized their contacts with family members and demonstrated interest in ongoing interaction with the nurse. Nurses learned successful feeding patterns from the family; families brought in favorite foods for the residents; and more family members visited and even brought pets for visits.
The families and nurses together devised how to communicate with the person with dementia. Families expressed increased interest in participating in family council and in education of the family regarding dementia and its effects; nursing assistants followed the care plan posted in patients' rooms; families consistently sought out the nurses; families who lived Ui the same area carpooled to the VAMC; and the nursing care eventually changed from team nursing to primary nursing.
The family intervention study, although small, resulted in a change in the nursing care practices on this long-term care unit. Family interaction and involvement in the resident's plan of care became the standard of care. The experimental protocol was integrated into the treatment protocol for all residents on this unit. Since the institution of this protocol, nurses reported improved attitudes, decreased burnout and fatigue, and increased personal job satisfaction.
Most of the patients with dementia responded to the integration of personal and family data to their care and their surroundings with behavioral and interactional changes. The nurses reported they felt they knew the patients better and gave more individualized care. As hypothesized, family members were willing to provide valuable psychosocial data, and the promotion of family involvement created benefits for the patient, family, and staff.
This study, of course, cannot be generalized to other settings, but the results demand consideration and replication. The feedback that the control group families wanted to be the recipients of the experimental treatment speaks for itself. As health-care technology prolongs the Ufe of patients with chronic illnesses and sequelae such as dementia, nurses will need to continue to include families as collaborators in providing quality care.
- Beck, C-, Heacock, P. Nursing interventions for patients with Alzheimer's disease. Nurs Clin North Am 1988; 23:95-124.
- Beck, C-, Heacock, P., Mercer, K., Thatcher, R., Sparkman, C. The impact of cognitive skills remediation training on persons with Alzheimer's disease or mixed dementia. / Geriatr Psychiatry 1987; ll(l):73-88.
- Bergman, R. Nursing the aged with brain failure. J Adv Nurs 1986; 11:361-367.
- Bleathman, C. Janforum. J Adv Nurs 1987; 12:531-534.
- Buckwalter K., Abraham, L, Neundorger, M. Alzheimer's disease: Involving nursing in the development and implementation of health care for patients and families. Nurs dm North Am 1988; 23:1-9.
- Hinton M. Freeing the family: Care in the future. Nursing Homes 1982; 2:26-30.
- Hoffman S-, Piati, C., Barry, K., Hamill, L. When language fails: Nonverbal communication abilities of the demented. In J. Hutton, A. Kenny (Eds.), Senile dementia of the Alzheimer's type. New York: Alan R. Liss, 1985.
- Mace, N. Families: The other side of Alzheimer's. Provider 1986; 5:22-25.
- Morris, R., Wheatley, J., Britton, P. Retrieval from long-term memory in senile dementia: Code recall revisited. Br / Psychiatry 1983; 22:141-142.
- Norberg A., Melim, E., Asplund, K. Reactions to music, touch, and object presentation in the final stage of dementia: An exploratory study. Int J Nurs Stud 1986; 23:315-323.
- Pajek, M. Alzheimer's disease inpatient care. AfN 1984; 2:216-232.
- Peplau, H. Interpersonal relations in nursing. New York: GP Putnam's Sons, 1952.
- Robinson, C., Thorne, S. Strengthening family "interference." / Mv Nurs 1984; 9:597-602.
- Stevenson, J. Family stress related to home care of Alzheimer's disease patients and implications for support. Journal of Neuroscience Nursing 1990; 22:179-188.
- Teusink, J., Mahler, S. Helping families cope with Alzheimer's disease. Hasp Community Psychiatry 1984; 35:152-156.
- Veterans Administration. Classification of extended care patients according to their nursing care needs. Washington, OC: Department of Medicine and Surgery, 1984, pp 1-11. RCS 10-0624.
- Veterans Administration Medical Center. Family mental health/collateral visits. Tomah, WI, Medical Center Memorandum 1989, #13630-89:1.
- Veterans Administration Medical Center. Memorandum communication to Chief Nurse: Report on study. 1987: Unpublished manuscript.
- Whitney, E, Pfohl, D. Nurses and families: Partners in care of the patient with Alzheimer's disease. Journal of Advanced Medical-Surgical Nursing 1989; l(2):55-66.
- Wilson, H. Family caregiving for a relative with Alzheimer's dementia: Coping with negative choices. Nurs Res 1989; 38:94-98.
- Zarit, S., Zarit, J., Reeve, K. Memory training for severe memory loss: Effects on senile dementia patients and their families. Gerontologist 1982; 22:373-377.
Age and Automated Management information Classification
Changes in Nursing Procedure With the Experimental Group
Kind and Numbers of Interventions