Table 2.
Recommendations on Personalizing ACP in Dementia
| Final Statements That Achieved a Consensusa | Agreement |
|---|---|
|
| |
| a. Healthcare professionals should adopt a person-centred approach when engaging in ACP conversations with the person with dementia and their family. This requires tailoring the ACP conversation to their health literacy, style of communication, and personal values, and to the person’s capacity for communication and decisions which may fluctuate (the round 3 statement which was included under a new heading ‘Recommended roles and tasks’ in round 3) |
Very high agreement. Median 5, IQR 0, 98.8% agreed (n = 85) |
| Adopt a prudent approach | |
| b. ACP should be adapted to the individual’s capacity, understanding about ACP and readiness to engage in the ACP process of the person with dementia and the family (the round 1 statement) |
Very high agreement. Median 5, IQR 0, 95.6% agreed (n = 91) |
| c. ACP includes exploring goals for future care but it may be helpful to start with discussing current care (the round 1 statement) |
Very high agreement. Median 5, IQR 0, 95.6% agreed (n = 91) |
| d. In case there is some resistance or hesitance which risks ACP not happening before capacity of the person with dementia is substantially impaired, healthcare professionals should take time, gain trust, explore this resistance or hesitance and what elements of ACP the person would be ready for (e.g., exploring personal values or identifying a representative), and based on this, strongly encourage the ACP conversation and retry if needed (the round 3 statement, introduced in round 2 based on divergent comments in round 1, revised after round 2)a |
High agreement. Median 5, IQR 1, 94.1% agreed (n = 85) |
| Provide information | |
| e. If desired by the patient or family after provided the opportunity to learn more, ACP includes information about diagnosis, probable disease course, and prognosis, and advantages and disadvantages of possible care and treatment options (the round 1 statement) |
Very high agreement. Median 5, IQR 0, 95.6% agreed (n = 91) |
| f. Healthcare professionals should provide persons with dementia and their family with clear and coherent information concerning ACP and they should prioritize together with the person and the family what information is provided in case uptake of information is limited. Information on benefits and limitations of ACP must be provided as a minimum (the round 1 statement) |
High agreement. Median 5, IQR 1, 87.9% agreed (n = 91) |
| Explore understanding | |
| g. The ACP process includes an exploration of the decisional capacity, understanding of ACP and an explanation of its aims, elements, benefits, limitations and legal status of the person with dementia and the representative (family) and an exploration of the relationship. Such explorations are repeated as necessary (the round 1 statement) |
High agreement. Median 5, IQR 1, 94.4% agreed (n = 90) |
| h. ACP includes the exploration of understanding about the dementia and its course of the person with dementia and the family, and health-related experiences, concerns and personal values of the person with dementia across the physical, psychological, social and spiritual (the round 1 statement) |
High agreement. Median 5, IQR 0.25, 94.4% agreed (n = 90) |
a
Supplement B3 shows the initial and revised statements and details the feedback of the panel. The criteria for consensus can be found in the Methods and in a footnote to Table 1.