CONNECT: A Diagnostic Disclosure Communication Intervention in Dementia Care

About This Grant

Project Summary Dementia is a life-changing diagnosis for patients and caregivers. Response to a diagnosis often includes grief, shock, and despair. Yet receiving a formal diagnosis has significant benefits, including access to effective medical management, specialized services, and opportunities to engage in care planning. Despite the benefits, evidence demonstrates inadequate clinician communication at the time of diagnosis (‘diagnostic disclosure’), which contributes to unmet needs for patients and caregivers. Integration of person-centered communication practices into diagnostic disclosure can be a powerful intervention to improve the quality of communication and care. This application proposes to develop and optimize a structured diagnostic disclosure communication intervention that integrates skills from palliative care (e.g. delivering difficult news, responding to emotions, tailoring to patient and caregiver needs, partnering in care planning) to improve clinician communication with patients and caregivers at the time of a dementia diagnosis. The K23 will provide Dr. Joanna Paladino (palliative care physician-scientist) with training in: (1) dementia clinical care and research; (2) theory-driven intervention development and social determinants of health; and (3) clinical trials in dementia care. The training plan will augment Dr. Paladino’s prior experience in clinical education and pragmatic research of a structured serious illness communication intervention (Serious Illness Care Program), which will be adapted to develop the diagnostic disclosure communication intervention (CONNECT, or Collaborative Navigation and Nurturing Empathy through Communication Techniques). Dr. Paladino has an expert mentorship team with a track record of federally funded clinical trials and expertise in dementia, geriatrics, intervention development, and palliative care. Massachusetts General Hospital has a strong record of successful completion of K awards and K-to-R transitions. Dr. Paladino will: (1) Adapt and refine CONNECT using qualitative research with patients with mild dementia (n=15), caregivers (n=15), and interprofessional clinicians (neurology, geriatrics, neuropsychology, geriatric psychiatry) (n=24); the intervention will target clinician communication practices and will include a Conversation Guide, skills training, and post-training support; (2) Examine preliminary feasibility and acceptability in an open pilot in memory clinics to refine the intervention (n= 2 neurology and geriatrics clinicians, 4 patient/caregiver dyads); (3) Conduct a pilot feasibility randomized controlled trial in neurology and geriatrics (n=12 clinicians, n=48 patients) comparing the intervention to usual care to examine feasibility of trial procedures and preliminary impact on mechanisms (e.g. clinician motivation, confidence, opportunity), communication quality, and patient and caregiver experience and outcomes. The K23 will lay the foundation for an NIA stage II efficacy trial and facilitate Dr. Paladino’s transition to an independent career in patient-oriented dementia research. Her long-term goal is to develop innovative, evidence-based interventions that transform communication, experience, and care at the time of a dementia diagnosis to improve person-centered outcomes for individuals affected by dementia.