Developing a Communication Intervention for People With Memory Challenges and Their Care Partners

Developing a Communication Intervention to Help People With Memory Challenges and Their Care Partners Engage in Advance Care Planning

The proposed research is consistent with broader public health goals focused on improving communication regarding end-of-life care and the Centers for Medicare and Medicaid Services' (CMS) call for increased patient engagement in advance care planning (ACP) as part of standard care. The proposed study will address this public health issue by developing a communication-based intervention designed to improve Alzheimer's Disease and Related Dementias (ADRD) patients' and care partners' engagement in ACP, distress and care partner burden, and completion of advance directives and receipt of goal-concordant care at the end-of-life. Therefore, this study is aligned with the National Institute on Aging's long-term goal to improve the quality of care for ADRD patients and CMS's goal to increase engagement in ACP.

The goals of this study are to: (1) develop a communication-based intervention, called KNow the Optimal Way (KNOW) for Alzheimer's Disease and Related Dementias (ADRD) patients and care partners that includes theoretically grounded communication strategies (e.g., acknowledgment, validation of fears) and distress management techniques (e.g., deep breathing, muscle relaxation); (2) evaluate the feasibility and acceptability of the intervention; and (3) test the preliminary efficacy of the intervention on ADRD patients' and care partners' preparedness for and engagement in advance care planning (ACP), and completion of advance directives (primary outcomes) as well as patient-care partner concordance on the person with dementia (PWD)'s healthcare values, perceived need for ACP, psychological distress, communication quality, and care partner burden (secondary outcomes).

Below we outline criteria for patient/care recipient (CR) (which includes patient/CR only or patient/CR enrolled as part of a dyad), care partner (CR) (which includes CR only or CR enrolled as part of a dyad), and dyad only relevant eligibility criteria:

Patient/care recipient (CR) eligibility criteria:

1. Montreal Cognitive Assessment-Blind (MoCA-B) score of 9-18;
2. decision-making capacity to consent to a low risk study as indicated by a score of ≥9 on the University of California-San Diego Brief Assessment of Capacity to Consent, a 10-item measure validated in patients with challenges in memory;
3. capacity to execute a Health Care Proxy, as indicated by a score of ≥ 11 on the validated and reliable HCP Guidelines for ability to execute a HCP among nursing home residents;
4. age ≥ 65;
5. reports receiving care and/or support from an unpaid care partner; and
6. reports that at least one of their ADs has not been completed (for CR's enrolled without a CP only).

A MoCA-B score of 9-18 is consistent with clinical guidelines for an average MoCA score for individuals with mild Alzheimer's disease and is within the threshold for having capacity to complete advance directives. Patients with this score are mobile, communicative, and generally involved in making medical care decisions. While patients must report having a care partner to be eligible, the patient can be enrolled in the study even if their care partner is not enrolled.

Care partner (CP) eligibility criteria:

1. provides informal (unpaid) care for a person with memory challenges, per self-report;
2. MoCA-B score of ≥19; and reports that at least one of the CR's ADs has not been completed (for CPs enrolled without a patient only).

While care partners must report caring for a person with memory challenges, the care partner can be enrolled in the study even if the patient is not enrolled.

Eligibility criteria for CRs and CPs enrolled as a dyad: In addition to the criteria above for CR and CP: (1) the CR and/or CP report that at least one of the CR's ADs has not been completed.

Patient and care partner exclusion criteria:

1. not fluent in English;
2. ≤17 years of age;
3. too ill or weak to complete the interviews (per the interviewer);
4. presence of significant sensory, language, or motor deficit (e.g., visual or hearing loss, paralysis, aphasia) (per self report, the interviewer or medical record); or
5. patient is in the late stage of dementia (i.e., severe cognitive impairment), is bed-bound, or has a nursing home admission planned within 12 months per CP report or the medical record.