December 7, 2025

@michaelokun

Family caregiver experiences in coordinating care are really important in Parkinson's, Alzheimer's and beyond. Spoiler alert: We are learning a ton from a recent look at national data, but are we paying attention? Caregiver refers to a family member or unpaid helper who supports an older adult w/ daily tasks and health needs. Jennifer Wolff and colleagues describe in a new paper in JAMA Network Open that family caregivers across the United States are frequently coordinating complex care for older adults and that the experience varies depending on communication and support. Key Points: - Family caregivers reported weak coordination w/ medical professionals and only moderate coordination w/ paid caregivers and other family caregivers. - Caregivers who interacted frequently w/ medical professionals and who received training, reported stronger communication and an enhanced shared understanding. - High-intensity caregiving and greater care needs in the older adult were associated w/ better coordination across the care team. My take: In my mind it is a huge mistake for us not to pay attention to caregivers especially as we improve our models of healthcare. Here are 5 points that resonated w/ me: 1- Family caregivers frequently carry the weight of coordinating care across many people in the care orbit, however they rarely receive structured guidance. 2- Supportive communication from medical professionals including listening and checking in on their (the caregiver) ‘understanding’ can strengthen the care network. 3- Training programs can boost skill and confidence for caregivers who are managing complex medical tasks at home. 4- When caregiving hours rise, the network tends to communicate better, which has the potential to improve safety and to reduce errors. 5- Systems that recognize caregivers as key team members will be essential for aging adults who rely every day on family support. https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2841639 #michaelokun #fixelinstitute #parkinson #caregiver #caregiversupport