Family Involvement in Care Study

Study Issues
During the course of the study, a variety of issues with families, staff members, and residents were encountered. The following is a brief commentary on several of these issues and the methods that were incorporated to address them.

Staff Issues :
The requirements of the study add a burden of documentation and time necessary for documentation, meetings, inservices for study participation, and implementation of the intervention. It was found that these requirements can result in inconsistent documentation and loss of staff interest. Methods of dealing with these issues focus on increasing and sustaining staff interest in their contribution to the study in the form of rewards and recognitions to the institution, the special care unit, and individuals.

Institutional rewards and recognitions include providing staff inservices with CEU credit to staff members free of charge to the institution and developing wall plaques to be presented to the institutions which recognize the institution's involvement in the Family Involvement in Care study.

Special care unit rewards and recognitions include the above mentioned wall plaque along with thank you cards sent to each special care unit by the research team.

Individual rewards and recognitions include Christmas gifts from the research team, free CEU credits, and letters of thank you and recognition sent to the individual and to the institution to be included in the individual's personnel files.

Family Issues :
Often, family members voice concerns about the extra time that would be required of them if they were to enroll their loved one in the study. Research staff members deal with this issue by informing the family members that the expectation is not necessarily that they must increase their time with the resident. They may put in as much or as little time as they wish. However, research staff members, with the family members, do examine what is usually done during the time family spends with the resident. Suggestions and ideas are developed regarding changes that might be implemented during visits to result in better quality visits with the resident.

A common issue that families often report is an unwillingness to request that the staff make desired changes in their loved one's care. This issue often develops from family members feeling that such requests would give an impression of dissatisfaction with the staff. Such an impression is carefully avoided by family members who could no longer provide the care to their loved one and who can appreciate through experience how difficult it is to care for a person with Alzheimer's disease. Occasionally, this issue will also be experienced because of the fear that negative feelings and opinions will be revealed to staff members with the result of possible retaliation in the quality of care provided to their loved one or in a possible loss of communication between family members and staff.

Methods of dealing with this very important issue include first informing family members that revealing problems to the staff does not necessarily mean that the staff is doing poor work or that the nursing home or special care unit is of poor quality. Once this is realized by family members, research team members work with family members to examine different and constructive ways of making suggestions or requests about how they'd like some aspect of care changed or incorporated.

Since much of the intervention revolves around problem-solving together, reluctance on the part of the family member or the staff member to reveal problems has the potential to render this part of the intervention ineffective. Encouraging communication between staff and family members and outlining options that staff or family members might try are the main methods of dealing with the issues encountered by family members.

Resident Issues :
Much of the data concerning the resident is collected by research staff members from chart data, staff reports, and family reports. However, direct interaction with the resident occurs during the bimonthly administration of the Alzheimer's Disease Assessment Scale (ADAS). Full informed consent from family members or friend caretakers is obtained by research team members as a proxy consent for the resident. Residents, however, still are able to participate to the best of their ability in the consent process by providing assent to the assessment. The resident retains the right to withdraw assent at any time during the assessment by objecting to the assessment or refusing to participate. This right is respected by investigators and ADAS interviewers.

This requires that the interviewers maintain a certain level of sensitivity to what the resident is feeling and how the resident is responding to the assessment process. Occasionally, flexible assessment measures are utilized, such as walking with the resident during parts of the assessment if the resident feels a need to move about. Such measures tend to build a rapport between the interviewer and the resident, allowing for an enjoyable and successful assessment for the resident. If a resident experiences undue emotional upset, the assessment process is halted by the ADAS interviewer and measures are taken to calm the resident (e.g., change the subject to one less threatening or upsetting, leave the room if necessary to allow the resident to calm down). If the resident is able and willing to continue the assessment after a time, the interviewer reapproaches the resident to continue the assessment. If not, or if the situation indicates that the resident will once again become upset, the assessment is terminated.

Long Distance Issues :
Several family members who would like to be involved but who are unable to make regular visits to their loved one because of distance issues may also be involved in the study. The research staff has developed a long distance protocol to be used in this situation. In this protocol, all interviews, questions, and contracts are completed over the phone. Research staff members also suggest activities that interested family members can do for their loved ones from a distance, such as send letters, make phone calls, and send video or audio tapes.