Adapting CAPABLE as CAPABLE-Family for the Caregiver Care-Recipient Dyad with Alzheimer's Disease and Related Dementias (ADRD) and Disability

Project Summary Co-occurring physical and cognitive impairments are an important public health concern in older adults with Alzheimer's Disease and Related Dementias (ADRD) leading to: decreased functional independence and increased mortality.

Caregiving for persons with co-occurring ADRD and physical disability is a direct risk factor for nursing home placement for care recipients, and a source of chronic physiologic stress for caregivers resulting in poor health, lost income, physical burden, psychological distress, social isolation and for those most distressed, increased risk of mortality.

Thus, it is important to maintain and improve the cognitive and functional ability of older adults with ADRD and their caregivers.

The majority of studies for physical interventions in older adults with cognitive impairment focus on: (1) ADRD in later stages, (2) nursing home and long-term care facility residents instead of home-based settings, and (3) few outcomes directly measured physical function (ADLs, IADLs) with geriatric standards of care.

The scientific gap is a physical intervention in older adults with cognitive impairment which focuses on: (1) ADRD in earlier stages, (2) home-based settings, and (3) outcomes directly measuring function with Katz ADLs and Lawton's IADLs.

The CAPABLE program is currently implemented in more than 30 sites across 16 states and uses the expertise of a Registered Nurse (RN), Occupational Therapist (OT), and Handyworker (HW) to address the home environment and strengths of older adults with disability to improve function, however excludes persons with ADRD.

The purpose of this study is to address the needs of older adults with co-occurring ADRD and physical disability and their caregivers with a human centered design (HCD) program, CAPABLE-Family, using the Verbrugge and Jett Disablement Process Model as the theoretical framework.

The long term-goal is to offer CAPABLE-Family at CAPABLE sites across the nation, providing benefits to a broader range of older adults.

The specific aims are: SA1: To adapt the CAPABLE program to focus on meeting the needs of older adults with co-occurring ADRD and physical disabilities and their caregivers (CAPABLE-Family), and SA2: To evaluate the acceptability, feasibility, and preliminary effect size of CAPABLE-Family in older.

In SA1, the dissertation study, the applicant seeks to identify caregiver and care recipient needs, such as: disability, environmental challenges, pain, depression, polypharmacy, provider communication needs, and caregiver burden.

This study aligns with the NIA's mission to include research on chronic disabling, and degenerative diseases of aging, with a particular focus on AD; on multiple morbidities, on individual behavioral changes with aging, and on caregiving.

The 1-year protocol development includes: contextual qualitative research, synthesis/ideation, and prototype testing from HCD with n=10 dyads, 10 RNs, and 10 OTs. Phases 4/5 provide clinical trials research experience directed by the Primary Mentor.

This research contributes to the development of a goal-directed human-centered behavioral intervention for older adults.