Outcome Measures for Dementia in the Advanced Stage and at the End of Life

Table 8

Items in scales measuring quality of care at the end of life with dementia.

Comfort assessment in dying with dementia (EOLD-CAD)	Respiratory distress observation scale (RDOS)
Discomfort^1	Heart rate
Pain^1	Respiratory rate
Restlessness^1	Restlessness
Shortness of breath^1,2	Accessory muscle use
Choking^2	Grunting at end-expiration
Gurgling^2	Nasal flaring
Difficulty swallowing^2	Fearful facial expression
Fear^3
Anxiety^3
Crying^3
Moaning^3
Serenity (inner peace)^4
Peace^4
Calm^4

¹Items in Physical distress subscale, ²items in dying symptoms subscale, ³items in emotional distress subscale, and ⁴item in well-being subscale.
For scoring see Volicer et al., 2001 [68] and Campbell, 2008 [64].