WOLFF, JENNIFER L.
JOHNS HOPKINS UNIVERSITY
Involving Family to Improve Primary Care Visits for Cognitively Impaired Patients
Alzheimer's disease & other dementias
Acquired Cognitive Impairment... Aging... Alzheimer's Disease... Alzheimer's Disease including Alzheimer's Disease Related Dementias (AD/ADRD)... Brain Disorders... Caregiving Research... Clinical Research... Clinical Research - Extramural... Clinical Trials and Supportive Activities... Dementia... Health Services... Neurodegenerative... Translational Research
? DESCRIPTION (provided by applicant): Dementia is among the most profoundly disabling and costly health conditions. With devastating impacts and no known cure, health care is nevertheless pivotal to detection and treatment of behavioral symptoms, initiation of social service referrals, and planning for future needs. Dementia poses special communication challenges in primary care, where most persons are initially treated. As persons with dementia have a high burden of chronic medical conditions, communication challenges also affect the care of co-occurring medical conditions, resulting in excessively burdensome treatments, inappropriate medication use, and potentially avoidable health care utilization. Family caregivers play a vital role in dementia care, and are typically present and actively involved in medical visits. Patients and providers strongly endorse involving family to meet the communication needs of patients who lack the capacity to obtain, process, and understand basic health information to make appropriate health decisions. However, knowledge of how to involve family caregivers in medical visits is lacking. This study will refine a brief intervention to effectivelyand purposely involve family caregivers (“”companions””) who accompany persons with cognitive impairment to primary care visits. The study team has developed a checklist to be used by patients and their companions prior to medical visits. The checklist is designed to elicit and alig patient and companion perspectives concerning health concerns to discuss with the doctor, and to clarify the role of the companion in the visit. The checklist was well received in a recent proo-of-concept randomized study. Communication was significantly more patient-centered in visits of patient-companion dyads who completed the checklist versus those who received usual care and did not complete the checklist. However, people with moderate and severe cognitive impairment were excluded from this early phase study. Therefore, building from our preliminary work, the overall objective of this study is to refine and evaluate a patient- companion checklist to address the communication needs of primary care patients with a range of cognitive impairment and their companions. First, we will undertake a user-centered design process to refine and enhance the checklist for older adults with mild, moderate, or severe cognitive impairment. We will incorporate feedback regarding checklist content and delivery characteristics (timing and mode of administration) by undertaking in-depth interviews with older patients with cognitive impairment (n=20) and their companions (n=20; 20 dyads in total). Second, we will conduct a two-group pilot randomized trial to evaluate the feasibility of delivering the refined checklist older primary care patients with cognitive impairment and their companions and to compare the checklist protocol to usual care with respect to medical communication (from audiotapes). The intervention has the potential to advance a low cost and practical approach to improving medical communication for a highly prevalent, vulnerable, and costly patient population whose care is especially challenging. Study activities will pave the way for a larger multi-site trial in primary care.
PUBLIC HEALTH RELEVANCE: Dementia poses special communication challenges in primary care, where most persons are initially treated. Although family caregivers play a vital role in the care of persons with dementia, and are typically present in doctor visits, evidence-based strategies that clarify how to involve family caregivers during medical visits do not exist. This study will refine and pilot test a brief intervention to effectively and purposely involve family caregivers who accompany persons with cognitive impairment to primary care visits.