Optimizing Dementia Care

Background: Dementia affects over 7% of Veterans age 65 and above seeking care through the
Veteran's Health Administration (VHA), amounting to one out of every eleven Veterans in some
VISNs. The unique functional and behavioral impairments associated with Alzheimer's or a
related dementia (ADRD) contribute substantially to psychological and physical morbidity of
family caregivers and high rates of nursing home placement, with 60% of ADRD caregivers
rating the emotional stress of caregiving as "high or very high," and over one third
reporting depressive symptoms. Although numerous evidence-based interventions have been
developed to reduce caregiver burden and improve mental health and functional outcomes of the
person with dementia, a recent systematic review noted almost none of these interventions
"make it off of the shelf" to be readily available in clinical settings. Care Consultation
(CC) has emerged as a rare exception. CC is an evidence-based telephone intervention
delivering psychoeducation, care coordination, and resource referrals in diverse areas such
as safety and mental and behavioral health support. Yet CC's focus on coaching and support is
inadequate for dyads experiencing high levels of distress. A stepped-intervention approach
would address the VA's efficiency needs while allowing the flexibility for more
resource-intensive additional counseling beyond the established CC framework when warranted
by high dyad distress. This CDA-2 proposal would move such a dyadic intervention forward.

Objectives: 1) Manualize the integration of care consultation and counseling components
(i.e., the CC+C intervention). CC+C is guided by a rehabilitation recovery-based conceptual
model to address the most common high distress targets (e.g., relationship distress, Veteran
or caregiver depression, anxiety, or pain) using patient-centered approaches. 2) Evaluate
preliminary effectiveness and feasibility of the CC+C Intervention in a randomized controlled
pilot study of distressed dyads to compare: a) the established CC intervention, to b) the
CC+C intervention on Veteran and caregiver outcomes. 3) Conduct exploratory analyses of the
CC+C intervention on Veteran long-term care placement at six and 12 months and examine two
key treatment moderators (behavioral symptoms and spousal relationship status) that may
impact intervention engagement and response to treatment.

The investigators hypothesize that: 1) Caregivers assigned to CC+C will have greater
reductions in caregiver burden at 6 months than those assigned to CC alone. 2) Indicators of
relationship strain (i.e., marital distress and/or mutuality) will show greater improvement
in CC+C than CC at 6 months. 3) Gains in shared pleasant events, social engagement, and
quality of life will be greater in CC+C than in CC alone at 6 months. 4) Participants with
dementia in both groups will have reduced depressive symptoms at 6 months. The investigators
will also explore the impact of the two interventions on rates of placement in long-term care
facilities (such as nursing homes, VA Community Living Centers or other supportive living
environments) at 6 and 12 months.

Methods: Ten modules combining successful elements from existing manualized therapies and
exercises developed by the investigative team during the CDA1 period will be integrated with
CC into a draft CC+C intervention manual. The manual will be finalized with input from the
mentoring team and an Expert Advisory Panel for completeness, feasibility, and safety and
risk considerations. Next 68 distressed Veterans with dementia and their family caregivers
will be recruited and randomized to either the CC+C intervention group or the CC comparison
group. Patient, caregiver, and relationship outcomes (e.g., burden, depressive symptoms,
anxiety, quality of life, relationship distress) will be measured at baseline, 6 months, and
12 months. Treatment implementation and feasibility data will be collected.

Anticipated Impacts: The goal of this career development study is to acquire the knowledge,
skills and experience necessary to successfully compete for an RR&D Merit Review Award
evaluating a randomized controlled trial powered to establish efficacy and test effectiveness
of the CC+C intervention. Rehabilitation-focused interventions that maximize functioning are
essential for successful non-institutional VA dementia care in the future. Work completed
during the CDA2 period will serve as a foundation for a career committed to this goal. The
impact of this work will be realized when an efficacious and highly-accessible intervention,
such as the telephone-based dyadic intervention being piloted, becomes available for aging
Veterans and their families.

Inclusion Criteria:

Veterans:

- Must be age 19 or older

- Must have a diagnosis of dementia or a related disorder

- Must live in the community (i.e. not in a VA Community Living Center, nursing home, or
other facility)

- Must cohabitate with a caregiver

- Must have reliable access to a telephone

- Must be willing to consent to participate or provide assent in conjunction with proxy
consent if their decision-making capacity is compromised

Caregivers:

- Must be age 19 or older

- Must self-identify as assisting with care for at least 8 hours/week

- Must be willing to consent to participate

Exclusion Criteria:

Veterans:

- Currently incarcerated

- Currently pregnant

- Dyads experiencing low levels of distress

Caregivers:

- Currently incarcerated

- Currently pregnant

- Experiencing severe cognitive impairment that would impair their ability to
communicate during an interview

- Dyads experiencing low levels of distress