A Family-centered Intervention for Acutely-ill Persons With Dementia

Older persons with Alzheimer's disease and related dementias (ADRD) are about two times as
likely to be hospitalized as their peers who are cognitively healthy. The care of
hospitalized persons with ADRD has traditionally focused on the acute medical problem that
led to admission with little attention paid to functional recovery. Older persons with ADRD
are at greater risk for functional decline and increased care dependency after discharge due
to a combination of intrinsic factors, environmental, policy, and care practices that
restrict physical and cognitive activity, and limited staff knowledge of dementia care.
Family caregivers (CGs) can play an important role in promoting the functional recovery of
hospitalized older adults. They can provide vital information, offer motivation and support
of function-focused care, and assume responsibility in varying degrees for post-acute care
delivery and coordination. Family-centered FFC (Fam-FFC) incorporates an educational
empowerment model for family CGs provided within a social-ecological in-patient framework
promoting specialized care to patients with ADRD. The intervention creates an "enabling"
milieu for the person with ADRD through environmental and policy assessment/modification,
staff education, unit-based champions, and individualized goal setting that focuses on
functional recovery. In this patient/family-centered care approach, nurses purposefully
engage family CGs in the assessment, decision-making, care delivery and evaluation of
function-focused care during hospitalization and the 60-day post-acute period. In the
proposed project, we will implement Fam-FFC in a cluster randomized trial of 438 patient/CG
dyads in six hospital units randomized within three hospitals (73 dyads per unit) to
accomplish the following aims: Aim 1: Validate the efficacy of Fam-FFC on physical function
(ADLs/ performance and physical activity), delirium occurrence and severity, neuropsychiatric
symptoms, and mood; Aim 2: Evaluate the impact of Fam-FFC on family CG-centered outcomes
(preparedness for caregiving, strain, burden, and desire to institutionalize); and Aim 3:
Evaluate the relative costs for Fam-FFC v. control condition, and calculate health care cost
(post-acute health care utilization) and total cost savings for Fam-FFC. We will also
evaluate the cultural appropriateness of Fam-FCC for diverse families in our sample. Dyads
will be composed of community-residing, hospitalized medical patients with very mild to
moderate dementia (0.5 to 2.0 on the Clinical Dementia Rating Scale) and their CG (defined as
the primary person providing oversight and support on an ongoing basis). Outcomes will be
evaluated at hospital admission, within 72 hours of discharge, and two and six months
post-discharge. This study will be a critical next step in delineating how to partner with
family CGs to change acute care approaches provided to patients with ADRD so as to optimize
function after discharge, and promote delirium abatement and well-being in these individuals.
The societal implications of helping older individuals with Alzheimer's disease and related
dementias avoid functional decline are enormous in terms of aging in place, quality of life,
cost, and caregiver burden. The study findings will be relevant for other areas of behavior
change research in acute care, specifically those related to engaging patients and families
in health care planning, delivery, and evaluation.

Patient Inclusion Criteria: medical patients who: are age ≥65, speak English or Spanish,
live in the community prior to admission to the hospital, screen positive for dementia on
well-validated scales (Montreal Cognitive Assessment {MoCA} ≤ 25 123-127 and AD8 >2
128,129), and score 0.5 to 2.0 on the Clinical Dementia Rating Scale; and have a family CG
as the designated study partner for the duration of the study.

Patient Exclusion Criteria: mild cognitive impairment (CDR 0.5 without functional or ADL
impairments), severe dementia (CDR 3), any significant neurological condition associated
with cognitive impairment other than dementia (e.g. brain tumor), a major acute psychiatric
disorder, have no family caregiver to participate, are enrolled in hospice and/or have a
life expectancy of six months or less, are admitted from a nursing home, or experience
transfers to another unit for stays longer than 48 hours.

Family Inclusion Criteria: age 18 and above whose relatives meet inclusion criteria will be
eligible if they can speak and read English or Spanish; and are related to the patient by
blood, marriage, adoption, or affinity as a significant other (defined as or by the
patient/legally authorized person as the primary person providing oversight and support on
an ongoing basis); participate, at a minimum, in the initial assessment and development of
FamPath; and able to recall at least two words on the MiniCog

Staff nurses (at the conclusion of the intervention at each site) who identify the
intervention unit as the primary unit worked, and speak English or Spanish, will be
included in focus groups

For the exploratory aim of assessing the cultural appropriateness of the intervention, we
will recruit family caregivers who self-identify as black, Latino, Asian and white,
randomly selected from the Fam-FFC sample. Approximately 10 percent of families from each
ethnic group represented in the study will be approached for consent for participation in
interviews. (If theoretical saturation is not reached, interviews will continue until
saturation is reached). Additionally, the six nurse champions will be consented and
interviewed after the study ends in his/her particular unit/setting to provide their
perspective on the cultural appropriateness of Fam-FFC.