The conversation usually happens in the last four minutes of the visit. The scans have been reviewed, the medication list reconciled, the door handle is within reach, and someone says the words "advance care planning" to a daughter who has been awake since five. She nods. She says yes, we have talked about it. What she means is that two years ago her mother said something about not wanting machines, in a kitchen, while the radio was on. Nobody in the room knows whether she could actually sign a form, name herself as the decision maker, or hold the line at three in the morning in an emergency department. The chart will record that advance care planning was discussed.
A team at the University of Virginia's Memory Disorders Clinic has tried to put a measuring instrument into that gap. In an abstract published in the Alzheimer's & Dementia conference supplement on December 26, 2025, Ryan C. Thompson White, Virginia T. Gallagher, Carol A. Manning and colleagues describe building a brief self-report measure of advance care planning self-efficacy and readiness for informal caregivers of people with cognitive decline. Their reasoning is laid out in the abstract: a care recipient's capacity to decide and to express wishes changes as the disease progresses, and caregivers may not know what their person wanted, or may not feel prepared to carry it out on their behalf. The design rests on a behaviour change framework the authors attribute to Sudore and colleagues (2013), in which knowledge, self-efficacy and preparedness are all required before planning turns into action.
The method is, in the most literal sense, a committee. Nine clinicians involved in care at the memory clinic searched PubMed, Google Scholar, Medline and PsycINFO, and identified ten publications describing formal measures of advance care planning. Those ten were then taken into a focus group of four clinical neuropsychologists, one neuropsychology fellow and four dementia care coordinators, with the stated goal of producing something brief enough to be usable. That is the whole of the reported work. The abstract does not publish the item list, a scoring scheme, or a single caregiver's answer.
This is where the story has to be told straight, because the gap between what was done and what the word "validated" implies is the most important thing in it. The authors say their proposed survey "may be useful to clinicians and researchers" evaluating self-efficacy and preparedness in these caregivers, and then set out what comes next: administering it to a clinical sample to evaluate internal consistency, test-retest reliability and construct validity. All of that is future work. As of this abstract, no psychometric properties have been reported. A family reading about a new readiness questionnaire should understand that it is a well-reasoned draft from experienced clinicians, not a tested tool with a published cut-off score.
Why report a draft at all? Because the problem it points at is documented elsewhere and is not getting smaller. A systematic review of communication strategies for improving readiness for advance care planning in dementia, published online in the Journal of Alzheimer's Disease on June 26, 2026 by Vera van der Nulft and colleagues, notes that these conversations are often delayed precisely because readiness is limited, in the person with dementia and in the family caregiver alike, and that researchers do not even define readiness the same way twice: sometimes as the behavioural domains captured by the Advance Care Planning Engagement Survey, sometimes as an attitudinal willingness. Length is the other obstacle. The Engagement Survey that Rebecca Sudore and colleagues optimised in the Journal of Pain and Symptom Management in April 2017 began as a validated 82-item instrument, and that paper's own premise was that shorter versions were needed.
For a care partner, the practical meaning is modest and real. Nothing here changes what anyone should do this week. But it signals a direction of travel in memory clinics: instead of a clinician guessing from a nod whether the family is ready, the question gets asked on paper, in advance, in the person's own words, with the uncomfortable parts (do you know what they wanted, could you say it out loud to a doctor, could you hold to it) separated out rather than collapsed into one yes. Families who want that conversation structured do not have to wait for an instrument to clear validation. They can ask the clinic what their own process is, and who in the building, nurse, social worker or care coordinator, actually owns it.