FCRP Policy Statement

While providing care for dependent elderly relatives, many families carry heavy physical and emotional burdens. The situations of families whose relatives have Alzheimer's Disease are particularly poignant. As the disease progresses, the patient loses function and becomes unable to recognize or communicate with family members. A wide variety of community services are available to assist families with the care of their elderly relatives. However, many of these services have not been widely used. Reasons for this need to be understood.

To learn more about the values that influence the use of community services, in-depth interviews were conducted with a group of mid-Michigan family caregivers of patients with Alzheimer's Disease. These interviews revealed several themes. Family boundaries govern help-seeking. While some families feel open to help-related interchanges with persons from outside the family unit, others find it extremely difficult to allow non-related individuals to assist with care. Families "own" the problems of family members. Contrary to the current belief that family values are deteriorating, the people who were interviewed were unwavering in their belief that the difficulties they were experiencing were their problems - not those of the church, the community or the health care system. Families are the protectors of vulnerable family members. As their relative becomes unable to look out for their own interests, family caregivers need to have trust that their loved one will be treated appropriately and not taken advantage of. Families are independent units. Family members who were interviewed expressed a need to be able to reciprocate in either affordable payment or in return services for the assistance they receive. Families define and enforce standards of care. Family caregivers evolve ways of providing care for their relative, which they define As correct, and expect to be replicated by those who provide assistance.

Given these characteristics of families providing care at home- policy makers should encourage the development of community resources that employ the following strategies:

• Since it may be very difficult for some families to allow non-relatives to help with care, health care professionals should establish close rapport with families. allow them time to adjust to the care situation- and maintain consistent workers.
• Family members should be given the opportunity to participate in mutual problem-solving-and care planning sessions, so that solutions to problems come from within the family.
• Formal caregivers should respect families' wish to protect members and establish a positive relationship by providing evidence of trustworthiness - i.e. training and bonding of workers.
• Since families shun dependence, dignity should be preserved via some form of reciprocity. For example families can be taught needed care skills.
• Families should be encouraged to continue to define care standards by ascertaining family expectations and seeking family evaluations of quality of care.

This research was supported by a grant from the Alzheimer's Association: Beverly C Duchassis Pilot Research Grant, Sharon King, Principal Investigator and a grant from the National Institute of Mental Health, "Impact of Alzheimer's Disease on Family Caregivers (2ROI-MH4 1766-03), Clare Collins, PrinCAP41 Investigator. ks.159.paUcy.qw