Galit Kleiner, Farooq Ismail, Omar Khan, Chris Boulias, Sian Harrylal, Ruiwei Jing, Jessica Cuppage, Sid Feldman, Luke Turcotte, Amanda Nova, Darly Dash, George Heckman
From 51 initially identified items across 22 MDS 2.0 sections, the panel achieved consensus on 10 preliminary items spanning activities of daily living dependency, range-of-motion limitations, medication use, pressure injuries, and resistance to care behaviors.
BACKGROUND: Paratonia is a form of involuntary muscle resistance affecting virtually all individuals with late-stage dementia, causing significant morbidity, including pain, skin breakdown, and caregiver burden. Despite its near-universal prevalence, paratonia remains under-recognized, and no standardized screening tools exist within routine care assessments. Identifying care-interfering paratonia supports nonpharmacologic care, helps avoid misdirected treatments, and enables research into investigational therapies such as botulinum toxin A.
OBJECTIVES: To develop a preliminary Collaborative Action Plan using items from the Minimum Data Set 2.0 (MDS 2.0) to identify residents with advanced dementia whose paratonia may have progressed to care-interfering severity.
DESIGN: Pilot study using nominal group technique consensus methodology combined with retrospective chart review.
SETTING AND PARTICIPANTS: Single-site study at a 472-bed long-term care facility in Toronto, Canada. Thirty residents with advanced dementia and confirmed care-interfering paratonia who were candidates for botulinum toxin A treatment were included.
METHODS: An expert panel of 6 clinicians used nominal group technique to identify candidate MDS 2.0 items. Items were extracted from charts using double data entry, and frequency analysis informed final consensus on preliminary screening items.
RESULTS: From 51 initially identified items across 22 MDS 2.0 sections, the panel achieved consensus on 10 preliminary items spanning activities of daily living dependency, range-of-motion limitations, medication use, pressure injuries, and resistance to care behaviors.
CONCLUSIONS AND IMPLICATIONS: This pilot study represents a first step toward systematic paratonia identification in long-term care and community home care settings. The preliminary screening items require validation in larger, multisite studies before clinical implementation.