Most persons living with dementia (PlwD) have multiple chronic conditions (MCC). Managing MCC typically involves adhering to clinical practice guidelines for single diseases. This approach often results in burdensome care that usually does not reflect what matters most to patients. To address the challenges of caring for patients with MCC, Patient Priorities Care (PPC) was developed - a process that aligns treatment recommendations with patient priorities rather than single-disease guidelines, to improve care. Successful completion of this pragmatic pilot project will help determine how to best embedded PPC in a Healthcare system that serves a large Hispanic population. The investigators will determine if the benefits previously reported with the use of PPC hold in Hispanics with dementia.

STUDY OBJECTIVES

• Primary Objective Adapt PPC to be culturally appropriate for Hispanics with dementia and test its feasibility in an outpatient setting.
• Secondary Objectives The adapted version of PPC will improve care by identifying the healthcare priorities of Hispanics with dementia and aligning these priorities with the care participants receive.

BACKGROUND AND RATIONALE

• Background on Condition, Disease, or Other Primary Study Focus Most older adults with dementia have multiple chronic conditions (MCC), experience difficulty managing their MCC, and have poorer outcomes. Managing MCC typically involves adhering to single-disease clinical practice guidelines (CPG). This approach often results in burdensome care with outcomes that may not reflect what matters most to patients. To address the challenges for caring for patients with MCC, Patient Priorities Care (PPC) was developed - an approach that aligns disease management with patient priorities rather than CPG, to improve care. PPC is feasible and effective. Patients report less burdensome treatment and have fewer medications and referrals after going through PPC. PPC also helps clinicians recommend home and community services that are aligned with patient priorities. Focusing on patient priorities rather than CPG is a patient-centered approach that integrates well in routine clinic encounters.
• Study Rationale Physical, emotional, and cognitive impairments related to dementia interfere with disease self-management. Persons living with dementia (PlwD) therefore rely on caregivers for care and decision-making. Caregivers may add complexity to the patient-clinician interaction but are essential for translating 'what matters most' for PlwD into healthcare decisions. Patient and caregiver involvement should include identifying outcome goals and care preferences (health priorities) as well as aligning care to meet those priorities. It is therefore important to integrate caregivers into the healthcare process to achieve high-quality, family-centered care.

PlwD from minority groups experience more difficulties and poorer outcomes compared to their Non-Hispanic White (NHW) counterparts. Hispanics are the fastest-growing underrepresented population in the USA and have 1.5 times higher risk of dementia compared to NHW. Hispanics rely heavily on their families and there is a cultural expectation of families to provide care to members in need. Recent data report older Hispanics prefer care at home rather than professional care. These cultural differences and language barriers play key roles in shaping healthcare priorities and how priorities impact outcomes among Hispanics.

STUDY DESIGN For the adaptation 5 Hispanic patients will be included and for the feasibility test 20 Hispanic patients will be included.

The process will be as follows:

1. Eligible Hispanic patients will be identified through the patient roster of the Geriatrics Outpatient Clinic at UTMB.
2. Primary care providers will be asked to select patients that would not be good candidates for the study.
3. A research team member will contact the eligible patients and invite them to schedule the priority setting an appointment. For those that agree she will obtain assent and/or consent and schedule the session.
4. On the day of the session, the facilitator will use the PPC materials and identify the patient priorities, and document them in the electronic health record (Step 1). The visit will be audio recorded.
5. A research team member will schedule an appointment with the patient's primary care provider (PCP) within 2 weeks to conduct the alignment portion of the PPC approach (Step two).
6. The primary care provider will discuss the patient priorities and the provider will align care to meet those priorities and document changes in care based on the discussion on the electronic health record.
7. A research member will call the patient and assess their satisfaction with the PPC approach 2 weeks after the visit with the primary care provider.
8. A research member will contact the primary care provider and assess their satisfaction with the PPC approach.
9. The PI, Co-PI, and advisory team will review all the information and make adjustments to the protocol for the feasibility phase.
10. Activities 1-8 will be repeated with 20 Hispanic patients to test the feasibility of the adapted PPC approach for Hispanics. Given the presence of cognitive impairment, consent from a family caregiver will be obtained.

Inclusion Criteria:

A) For adaptation (n=5)

• Patient's primary care provider is located in the UTMB Geriatrics Outpatient Clinic in Galveston.
• Patient identifies as Hispanic.
• Patient speaks English or Spanish.
• Patient has multiple chronic conditions listed as diagnoses in their electronic health record (3 or more chronic conditions).
• Consent to participate in all parts of the study.
• Primary care provider agrees with participation. B) For feasibility testing (n=20)
• Patient's primary care provider is located in the UTMB Geriatrics Outpatient Clinic in Galveston.
• Patient identifies as Hispanic.
• Patient speaks English or Spanish.
• Patient has multiple chronic conditions listed as diagnoses in their electronic health record (3 or more chronic conditions).
• Patient has diagnosis of dementia.
• Have a caregiver willing to participate in the study.
• Patient consent if he/she has capacity as deemed by their primary care provider or assent if he/she doesn't have capacity.
• Caregiver consent.

Exclusion Criteria:

A) For adaptation (n=5)

• Patient's primary care provider located at UTMB but not in the Geriatrics Outpatient Clinic.
• Non-Hispanic patients.
• Speaks language other than English or Spanish.
• Patient does not have multiple chronic conditions.
• Deemed ineligible by primary care provider.
• Patient has diagnosis of dementia. B) For feasibility testing (n=20)
• Patient's primary care provider located at UTMB but not in the Geriatrics Outpatient Clinic.
• Non-Hispanic patients.
• Speaks language other than English or Spanish.
• Patient does not have multiple chronic conditions.
• Patient doesn't have diagnosis of dementia.
• Patient deemed ineligible by primary care provider.
• Patient doesn't provide consent or assent based on capacity.
• Caregiver doesn't provide consent.

De-identified data of participants and their caregivers will be made available to other researchers once results have been released to clinicaltrials.gov.

Once results have been submitted to clinicaltrials.gov the listed materials will be available to share with other researchers.

Data will be shared with researchers upon request to the Pi or Co-PI of the study.

Participants from the adaptation phase were different from those in the feasibility phase. Baseline Characteristics were not collected for caregivers.

18 months

1 participant from the adaptation and feasibility group did not complete the intervention. Hence, we did not assess adverse events in them.