Why Dementia Care Needs a Better Playbook for Transitions and Coordination
Families are left navigating a complex healthcare system, often making decisions in crisis without clear guidance.
A recent integrative review published in Alzheimer’s & Dementia: Translational Research & Clinical Interventions examined how care transitions and coordination are measured for people living with dementia. The findings reveal a major gap: most studies focus on hospital visits and costs rather than what actually improves quality of life for patients and families.
Dementia Patients Are Stuck in a Cycle of Crisis Care
More than six million Americans live with dementia today, a number expected to double by 2050. These individuals are significantly more likely to experience:
Frequent hospitalizations, many of which are preventable
High rates of readmission after being discharged
Uncoordinated transitions between hospitals, rehab, home care, and long-term care
A review of 1.8 million hospital discharges found that 40 percent of hospitalizations for dementia patients were potentially avoidable. The root cause? A reactive system instead of a proactive one. Care transitions should be structured, person-centered, and designed to keep people stable, but too often they are last-minute, disorganized, and leave families struggling to keep up.
What the Research Says About Care Coordination Measures
The study reviewed 71 reports on care transitions and coordination for dementia patients and classified the measures into three categories:
Identifying the Right Patients for Transitional Care
Some tools, like the Johns Hopkins Dementia Care Needs Assessment, help determine who needs coordinated care.
However, these assessments are time-consuming and rarely standardized across healthcare settings.
Evaluating the Quality of Transitional Care
Some studies measured care engagement, goal setting, and communication quality between providers.
No standardized tool exists to assess transitions comprehensively.
Measuring Outcomes (With the Wrong Focus)
The majority of studies measured hospitalizations, emergency room visits, and costs rather than patient experience or well-being.
Cost reduction is an important outcome, but better coordination naturally reduces costs. It should not be the primary metric for success.
We don’t measure what matters most.
We track dollars spent on emergency room visits, but not whether caregivers feel supported.
We count the number of hospital stays, but not whether transitions are actually helping people stay at home longer.
We measure mortality rates, but not quality of life in the time people have left.
To fix this, future research and healthcare initiatives must focus on:
Person-centered care transitions that prioritize patient and family well-being
Proactive care coordination that prevents crises instead of just responding to them
Standardized tools that measure what actually improves life for dementia patients and caregivers
Dementia care should be about making sure that individuals and their families have the support they need. The healthcare system needs to do better.
Original Source:
Hirschman, K.B., McHugh, M., & Morgan, B. (2023). An integrative review of measures of transitions and care coordination for persons living with dementia and their caregivers. Alzheimer’s & Dementia: Translational Research & Clinical Interventions. Read the full study here.
