Family Involvement in Care Study

General Information About the FICS Study

This study is the third phase in the research testing of interventions for persons with Alzheimer's disease and other dementias, their families, and the staff of nursing homes who care for these people. This study experimentally tests the effects of a specific nursing intervention called Family Involvement in Care (FIC). PHASE I involved evaluating a special care unit designed for people with Alzheimer's disease and other dementias. PHASE II was a field experiment with repeated measures to compare the effects of the special care
unit for the care of Alzheimer's residents to that of traditional units that integrate these residents with non-demented residents.

The Purpose
The Family Involvement in Care Intervention
The Role of the Nursing Home Staff
The Role of the Family Members or Friends
The Role of the Residents
Length of the Study
Participating Nursing Homes
Funding for the Study

The Purpose
The study examines the effect of family and friend involvement in the care of persons with Alzheimer's disease and other dementias. We look at how this participation in care affects the person with dementia, the family or friend, and the staff of the nursing home. Residents of special care units with irreversible dementias and their
family/friends are eligible to participate in the study. The overall aim of the study is to improve the care of nursing home residents with irreversible dementias.

The Family Involvement in Care Intervention
The FIC intervention consists of a staff/family conference for negotiation of family involvement in care. In the negotiation process, staff and family members identify ways they can work together in providing care for the resident with dementia. The results of the negotiation are summarized in an agreement approved by both family
and staff.

The Role of the Nursing Home Staff
Nursing home staff who agree to participate are involved in several aspects of the study. Staff will periodically answer questionnaires about Alzheimer's disease/dementias and their role in caring for residents. Staff will also participate in training sessions about dementias and about the study. In addition, staff will collect some data about the activities of residents on their unit who participate in the study.

The role of nursing home staff will differ somewhat depending on whether the nursing home has been designated a control site or an experimental site for the study. Staff at the control sites will continue with their usual routines of care for residents and families/friends. Staff at the experimental sites will assist family and friends in the involvement in care intervention. Support for facility staff in implementing the intervention will be provided by research program assistants, who are RN's or social workers with advanced preparation.

Staff from many different job classifications are asked to participate in the study. We believe that all staff who have contact with residents influence the care of those residents. Each staff person's perspective on dementia is important to us.

The Role of the Family Members or Friends
Families and friends at the experimental sites will be asked to participate in the Family Involvement in Care intervention. Family members or friends who consent to participate will be asked to complete questionnaires every two months for a nine month period. They will also be interviewed on three different occasions. The
questionnaires and interviews ask about opinions on dementia, giving care to loved ones with dementia, and the care the nursing home provides to their loved one.

The Role of the Residents
Not all residents from each special care unit will participate in the study. Only those with irreversible dementias are eligible to participate. In addition, only those residents whose family or friends agree to participate will be involved. A legally authorized representative must also consent for each resident's participation in the study.

Residents whose family member or friend have given consent to participate, and who provide personal assent to participate, will be interviewed by study staff every two months for a nine month period. The interview is designed to evaluate memory in people with dementia. No invasive procedures or tests will be done with the nursing home residents. Other information on the residents will be extracted from the existing records of the nursing home.

Length of the Study
Each nursing home will participate in the study for a two year period. Individual families and residents will participate for nine months. The overall study started in 1993 and will continue for four years.

Participating Nursing Homes
Fourteen nursing homes with special care areas are currently participating, or have participated, in the study. The research staff are working to add other sites in the future. Some nursing homes are designated as experimental sites and others as control sites for the study. The current participants are:

Alverno Health Care Facility, Clinton, IA
Americana Health Care Facility, Waterloo, IA
Friendship Haven, Fort Dodge, IA
Good Samaritan Center, Estherville, IA
Iowa Masonic Nursing Home, Bettendorf, IA
Lakeland Nursing Home, Elkhorn, WI
Lutheran Home for the Aged, Vinton, IA
Madrid Home for the Aged, Madrid, IA
Manor Care Nursing Rehabilitation Center, Davenport, IA
Methodist Manor, Storm Lake, IA
Rock County Health Care Center, Janesville, WI
Senior Home, Monticello, IA
St. Luke's Lutheran Home, Spencer, IA
West Ridge Care Center, Cedar Rapids, IA

Funding for the Study
The study is funded by a grant from the National Institutes of Health, National Institute for Nursing Research Grant Number 2 R01 NR01689-03A2. There is no charge to residents, families, or staff who participate.