Caregiver Burden and Depression: Caring for Those Who Care for Others

This research aims to determine if participation in caregiver support groups and individual
differences between caregivers influence the decision of the caregiver to place their family
member in a long-term care facility. This research also aims to identify significant
predictor variables of outcome. The intervention to be employed has been empirically
supported by past research (Gonyea, 2006), but additional research is required to establish
this intervention as an empirically supported treatment for caregivers. The proposed research
will examine the hypotheses that: (A) a brief 6-session caregiver support group will reduce
caregiver burden and depression and delay or prevent transition to long-term care (e.g.,
nursing home care); and (B) specific caregiver characteristics will emerge as significant
moderators of treatment outcomes.

The first activity of the proposed research will involve the advertisement of the caregiver
support group. The caregiver support group advertisement will be posted in various facilities
related to the care of older adults in the surrounding community and will also be distributed
via email listserves. Next, individuals who are interested in the study and caregiver support
group will contact the principal investigator or research assistants via the telephone number
or email address listed on the advertisement. The proposed research utilizes a UCF behavioral
intervention group and a community comparison group. The UCF behavioral intervention group
will be based on the principles of behavior therapy and behavioral activation. Groups are
designed to teach caregivers specific behavioral techniques for managing care recipients'
symptoms in the home environment. The community comparison group will be a "treatment as
usual" group; participants will be recruited from various established caregiver support
groups in the community. The UCF behavioral intervention caregiver support groups will be
highly structured and will be conducted with up to 13 members. The UCF behavioral
intervention caregiver support groups will be run over the course of 6 weeks, with groups
meeting once a week for 90 minutes. Groups will be scheduled at weekly intervals, as is
characteristic for most psychotherapeutic support groups. The intake packet will include
questions that are biological, psychological, and social in nature. Caregivers will also be
asked questions related to their caregiving situation. Included in the packet are the
following measures: demographic survey, ADL and IADL survey, caregiver preparedness scale,
Center for Epidemiological Studies Short Depression Scale (CES-D 10), familial obligation
scale, caregiver strain index, a neuropsychological symptom index, and a satisfaction survey.
In addition, participants will completed at-home collection of saliva samples for measurement
of stress hormone variation (cortisol). Saliva samples will be collected using oral swabs,
which will be stored in number-coded tubes. Participants will record the time of day samples
were collected, and provide subjective measures of psychological stress. Completed sample
kits will be collected by study research assistants and brought back to th lab freezer for
storage. This procedure will be repeated after the final session of the intervention. The
group facilitator and co-faclitator will review the consent form with caregivers in person at
the beginning of the first session. Participants who agree to take part in the caregiver
support group and the proposed research will be given a copy of the consent form and will
remain present for the current and subsequent sessions. If a participant is absent from a UCF
behavioral intervention group session, he/she will be contacted by telephone and encouraged
to attend future session as is consistent with standard clinic procedure. The investigators
will not exclude a participant's data from analyses if he/she does not attend all six
sessions.

Participants will be audio taped during this study. If a participant does not want to be
audio taped, he/she will not be able to participate in the study and will be referred to an
alternate provider if interested in receiving services elsewhere. The purpose of audio taping
is to monitor consistency among the group sessions and to ensure treatment fidelity. The
recordings will be reviewed only by principle investigator Dr. Paulson and the
co-investigators, and will be deleted within two weeks of the recording. Audio recordings
will be saved locally on an encrypted iPad used only for research purposes that is stored in
a locked file cabinet in the OLDeR research lab, which requires code and card access.

Follow-up will be performed at 6 month intervals until the caregiving relationship has ended
(if the caregiving relationship persists, follow-up will cease at 5 years).

For both the UCF behavioral intervention group and the community comparison group,
participants will be contacted via telephone at 6 month intervals (after the termination of
the 6-week support group for the UCF behavioral intervention group, and every 6 months
following the termination of the first UCF behavioral intervention caregiver support group
for community comparison participants).

The intended sample size for the proposed research includes 30 participants in the UCF
behavioral intervention group and 30 participants in the community comparison group for a
total of 60 participants.

Proposed statistical methods for data analyses include intent-to-treat (ITT) with last
observation carried forward.

Inclusion Criteria:

- All participants must be currently providing care to a demented or cognitively
impaired adult

- All participants must live in the United States.

- Participants in the community comparison group must be currently enrolled in a
caregiver support group in the community (i.e., not the UCF caregiver support group).

Exclusion Criteria:

- Participants who do not speak English