Facilitating Caregiver Adaptation to Patient Institutionalization

This study is designed to address three interrelated needs of caregivers who recently placed
a relative in a long-term care facility: (a) psychiatric problems, particularly depression
and anxiety which are common among caregivers who recently placed their relative; (b)
knowledge about the nature of long-care procedures and resident trajectories; and (c)
end-of-life planning for the institutionalized relative. These needs will be addressed with
an intervention that has three components: (a) a treatment protocol for depressive symptoms,
major depression, and anxiety; (b) education about the organization and operating procedures
of long-term care facilities, the clinical aspects of frailty, and a negotiated plan for
caregiver participation in the care of their relative; and (c) education about resident
trajectories in long-term care and assistance with end-of life planning. Expected outcomes
include reduced depression and anxiety, greater satisfaction with the long-term care
facility, and reduced service use because of an articulated end-of-life plan. Because this
intervention is designed to reduce distress prior to the death of the placed relative, a
risk factor for negative bereavement outcomes, we also expect lower levels of depression and
complicated grief post-death among persons in the active treatment condition whose relative
dies. In as much as the demand and utilization of long-term care is virtually certain to
increase in the decades ahead, this study has the potential of providing valuable guidance
in navigating this transition and in improving health outcomes for caregivers in the short-
and long-term. The specific aims of this study are to:

1. Assess the effects of an intervention targeting caregivers who recently placed a
relative in a long-term care facility because of cognitive and/or physical disability.
In a two group randomized clinical trial we predict that caregivers assigned to active
treatment will have lower levels of depressive symptoms, anxiety symptoms, and greater
satisfaction with the long-term care facility when compared to individuals assigned to
the control condition.

2. Assess the impact of the intervention on psychiatric outcomes and on complicated grief
for those caregivers whose relative dies during follow up. We predict that long-term
symptoms of depression and symptoms of complicated grief will be lower after death
among caregivers assigned to active treatment when compared to those in the control
condition.

3. Carry out exploratory analysis to assess the effects of the intervention on
resident-related outcomes, including number of emergency room visits and
hospitalizations, rate of functional decline, perceived quality of life, and formal
complaints filed on behalf of the resident. Because the intervention engages the
caregiver in monitoring resident health status and in end-of-life planning, we predict
that resident-related outcomes will be better in the active treatment group. Overall,
this should be reflected in greater perceived quality of life of residents in active
treatment when compared to residents of participants in the control condition.

Inclusion Criteria: The Caregiver

1. is a family member/partner (e.g., spouse, child, or fictive kin) of institutionalized
person;

2. is 21 years of age or older;

3. provided a minimum of 3 months of in-home care prior to institutionalization;

4. speaks English; and

5. plans to live in the area for at least 6 months.

The care recipient/resident must:

(1) be 50 years old or older; and (2) have been permanently placed within a long-term care
facility within the last 120 days with impairment in at least 3 of 6 Activities of Daily
Living.

Exclusion Criteria:

(1) care recipient is enrolled in a hospice program.