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

Change in advance care planning preparedness will be assessed in patients and care partners using the reliable and valid Advance Care Planning Engagement Survey: Process Measures (31-items). Response options range from 1=never to 5=a lot. Questions include those asking about knowledge of advance care planning, degree of contemplation about advance care planning, and self-efficacy and readiness to engage in advance care planning. Overall scores can range from 31 to 155, with higher scores indicating more engagement in advance care planning.

Change in patient engagement in advance care planning will be assessed in patients using the reliable and valid Decision Maker (four items) subscale of the Advance Care Planning Engagement Survey: Action Measures. Response options range from 1=never to 5= a lot. Questions include those asking about whether patients have engaged in a decision around advance care planning (e.g., "Have you already decided who you want your medical decision maker to be?" Scores can range from 4 to 20, with higher scores indicating that more decisions have been made around advance care planning.

Change in care partner engagement in advance care planning will be assessed with a companion measure in the final phases of validation by Van Scoy and Sudore. This measure adapts the Advance Care Planning Engagement Survey to apply to care partners. Response options range from 1=never to 5=a lot. Scores can range from 4 to 20, with higher scores indicating more decisions have been made.

Discussion of advance directives will be assessed with an 8-item measure that asks persons with ADRD and care partner whether the patient has discussed end-of-life care, living will, health care proxy, and DNR orders with family/patient and doctor/patient's doctor. Response options are yes or no. A total score is created by adding up the number of discussions, which can range from 0 to 8, with 0 meaning no discussions have occurred (low score) to 8, meaning all discussions have occurred (high score).

Completion of advance directives will be assessed by asking patients whether they have completed a do-not-resuscitate order, a living will, and/or or identified a health care proxy; data will be verified through the patient's electronic health record. Completion will be scored a 0 if the patient has completed none and 1 if they have completed one or more of the advance directives. Additional analyses will be done on each individual advance directive (e.g., 0 if no DNR order, 1 if yes to completing DNR order).

Change in concordance on healthcare values will be assessed by ADRD patients' and care partners' ratings of the ADRD patient's values on the Health Care Values Rating Scale, a 13-item measure of the degree to which various values influence medical treatment decisions developed in ADRD patients. Each item is rated on a three-point Likert scale (1=influence not at all to 3=influence a lot). Concordance will be defined as a difference of one or less per item between responses of ADRD patients and their care partners (rating the ADRD patient's values).

Change in perceived need for advance care planning will be assessed with the reliable and validated Decisional Balance scale, a 12-item scale that assesses perceived pros and cons of engaging in ACP. Each item is rated on a five-point Likert scale (1=not important to 5=extremely important) indicating how important a certain feature of advance care planning is. Overall scores can range from 12 (low importance) to 60 (high importance).

Change in psychological distress will be assessed with the 20-item Center for Epidemiological Studies Depression Scale which has demonstrated validity in ADRD patients and their care partners and the seven-item anxiety subscale of the Hospital Anxiety and Depression Scale. Each item rates the degree of occurrence of certain depressive features from rarely or none of the time (less than 1 day) to most or all of the time (5-7 days). Total scores can range from 20 to 80, with higher scores indicating higher frequency.

Psychological distress will be measured using the Hospital Anxiety and Depression Scale (HADS), a valid and reliable 14-item, Likert-type self-report measure of mood disturbance commonly used with cancer patients. The HADS contains two seven-item subscales: 1) anxiety and 2) depressive symptoms. Each item on this scale is rated on a 4-point scale (0 to 3), and all items are summed to create a HADS total score. Total scores can range from 0 to 42, with higher numbers indicating higher levels of distress.

Communication quality will be assessed with the 5-item Family Communication subscale of the Cancer Communication Assessment Tool for Patients and Families, a valid measure in cancer patients and care partners. Response options are on a 5-point Likert-type scale (1 = strongly disagree to 5= strongly agree). Scores can range from 5 to 25, with higher scores indicating worse communication quality.

Care partner burden will be assessed with the Zarit Burden Interview (ZBI), a reliable and valid 22-item measure of caregiver (care partner) burden used in intervention studies of cancer caregivers (care partners). Response options are on a 5-point Likert-type scale (0 = never to 4=nearly always). Scores can range from 0 to 88, with higher scores indicating higher levels of burden.