Table 1.

The Three Issues Specific or of Particular Importance to ACP in Dementia: The Most Salient Recommendations and its Evaluations

Issue and Evaluation^a	The Most Salient Recommendations (Primarily for Healthcare Providers^b) That Achieved a Consensus^c

1) Capacity^b Survey round 1 (n = 91)^a No consensus. Moderate agreement (median 4, IQR 1, 87.9% agreed). Survey round 3 (n = 83) (not included in round 2 to allow more time for revisions) Consensus on revised recommendations Very high agreement (median 5, IQR 0, 96.4% agreed)	• When starting an ACP conversation with a person with dementia,^b always start from the assumption that the person has capacity. • Formal capacity assessment is not necessary for every ACP conversation but should be performed if required guided by a country’s legal and regulatory frameworks. Nevertheless, it is important to be aware of any capacity issues occurring despite support in ACP conversations. If in doubt about a person’s capacity, short assessment tools can be used. • Keep in mind that capacity is decision-specific and may fluctuate over time: a person with dementia might have capacity for one decision and not for another, or their capacity may be better at a certain moment in time. Therefore, ACP conversations and its contents should be spread over time and planned in a flexible manner considering also triggers and opportunities to spontaneously start ACP conversations. References: Alzheimer Europe. Legal capacity and decision making: The ethical implications of lack of legal capacity on the lives of people with dementia. 2020. Harrison Dening K, Jones L, Sampson EL. Advance care planning for people with dementia: A review. Int Psychogeriatr. 2011;23:1535–1551. doi: 10.1017/S1041610211001608. Piers R, Albers G, Gilissen J, et al. Advance care planning in dementia: Recommendations for healthcare professionals. BMC Palliat Care. 2018 June 21;17(1):88. doi: 10.1186/s12904-018-0332-2. Wendrich-van Dael A, Bunn F, Lynch J, Pivodic L, Van den Block L, Goodman C. Advance care planning for people living with dementia: An umbrella review of effectiveness and experiences. Int J Nurs Stud. 2020;107:103576. doi: 10.1016/j.ijnurstu.2020.103576.

2) Family^b Survey round 1 (n = 91) Consensus. High agreement (median 5, IQR 1, 93.4% agreed).	• Encourage family to listen to, discuss and appreciate the person’s deliberations and preferences, early (even prior to diagnosis), provided the person is willing to share this information. • Inform family about their changing role in the ACP process, including their (future) role to reconstruct or interpret the person’s probable preferences from current indications rather than to make their own decisions on the person’s behalf. • Prepare family for a nonlinear process of understanding the person’s preferences highlighting the possibility of contradictions between current understanding of preferences indicated verbally or nonverbally, and preferences stated earlier. References: Bruce CR, Bibler T, Childress AM, Stephens AL, Pena AM, Allen NG. Navigating ethical conflicts between advance directives and surrogate decision-makers’ interpretations of patient wishes. Chest. 2016 February;149(2):562–567. doi: 10.1378/chest.15-2209. Piers R, Albers G, Gilissen J, et al. Advance care planning in dementia: Recommendations for healthcare professionals. BMC Palliat Care. 2018 June 21;17(1):88. doi: 10.1186/s12904-018-0332-2.

3) Engagement and communication Survey round 1 (n = 88) Consensus. High agreement (median 5, IQR 1, 93.2% agreed)	- Active role • Conversations about preferences for future care must start early because the active role played in ACP inevitably reduces over time. At the very least, early agreement on who can represent the person with dementia and how much leeway the representative^b may have in interpreting these preferences. • Take time and start a conversation by making sure all agree about the purpose of the conversation (Groen van de Ven et al., 2017). Accept if the person does not want or cannot talk about future issues but return to this, as active role played may fluctuate and also readiness to engage in conversations may change. Also, another professional caregiver may return to it; a caregiver with a different-trust-base or no particular-relationship with the person with dementia or in a different setting such as at home (Karel et al., 2007; Goodman et al., 2013; Poppe et al., 2013; Tilburgs et al., 2018). • Making advance decisions or conveying rather confronting information is not advised if the person is not comfortable with that or copes by denying the diagnosis and not looking ahead (Thorsen et al., 2020). Discussing concrete everyday care experiences and key relationships on which the person with the dementia is the expert can normalize matters while it can help infer preferences about future care (Goodman et al., 2013; Poppe et al., 2013).
	- Communication issues • Address the person with dementia directly also when family is present as we tend to underestimate capacities to express preferences and let family take over (Godwin et al., 2009; Karnieli-Miller et al., 2012). • Express engagement and empathy such as through maintaining eye contact, gestures and intonation even when the person seems disengaged (Visser et al., 2021). Double check understanding. Purposefully use (Tilburgs et al., 2018) or not use (Goosens et al., 2020) closed questions to fit with person and culture, and reformulate or use images if needed. Offer opportunity to ask questions (Goossens et al., 2020). • Listen carefully to what the person is saying in an effort to also understand messages that are less clear, and let the person talk (Karel et al., 2007). Awareness of their body language, reading nonverbal behaviour is essential. Reading behaviour may provide a lot of information; specific types of dementia come with different behaviours. Always be mindful of sensitive topics as persons with dementia may have difficulties expressing feelings verbally, but also nonverbally. References: Godwin B. ‘In solitary confinement’: Planning end-of-life well-being with people with advanced dementia, their family and professional carers. Mortality 2009;14(3):265–285. doi: 10.1080/13576270903056840. Goodman C, Amador S, Elmore N, Machen I, Mathie E. Preferences and priorities for ongoing and end-of-life care: A qualitative study of older people with dementia resident in care homes. Int J Nurs Stud. 2013 December;50(12):1639–1647. doi: 10.1016/j.ijnurstu.2013.06.008. Goossens B, Sevenants A, Declercq A, Van Audenhove C. Improving shared decision-making in advance care planning: Implementation of a cluster randomized staff intervention in dementia care. Patient Educ Couns. 2020 April;103(4):839–847. doi: 10.1016/j.pec.2019.11.024. Groen van de Ven L, Smits C, Elwyn G, et al. Recognizing decision needs: First step for collaborative deliberation in dementia care networks. Patient Educ Couns. 2017 July;100(7):1329–1337. doi: 10.1016/j.pec.2017.01.024. Karel MJ, Moye J, Bank A, Azar AR. Three methods of assessing values for advance care planning: Comparing persons with and without dementia. J Aging Health. 2007 February;19(1):123–151. doi: 10.1177/0898264306296394. Karnieli-Miller O, Werner P, Neufeld-Kroszynski G, Eidelman S. Are you talking to me?! An exploration of the triadic physician-patient-companion communication within memory clinics encounters. Patient Educ Couns. 2012 September;88(3):381–390. doi: 10.1016/j.pec.2012.06.014. Poppe M, Burleigh S, Banerjee S. Qualitative evaluation of advanced care planning in early dementia (ACP-ED). PLoS One. 2013April 10;8(4):e60412. doi: . Thorsen K, Dourado MCN, Johannessen A. Awareness of dementia and coping to preserve quality of life: a five-year longitudinal narrative study. Int J Qual Stud Health Well-being. 2020 December;15 (1):1798711. doi: 10.1080/17482631.2020.1798711. Tilburgs B, Vernooij-Dassen M, Koopmans R, Weidema M, Perry M, Engels Y. The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: A qualitative study. BMC Geriatr. 2018 August 16;18(1):184. doi: 10.1186/s12877-018-0872-6. Visser M, Smaling HJA, Parker D, van der Steen JT. How do we talk with people living with dementia about future care: A scoping review. Front Psychol. 2022 Apr 12;13:849100. doi: 10.3389/fpsyg.2022.849100 [accepted manuscript; it was not available yet at the time we presented this text to the panel].

Evaluation criteria for consensus (defined as high or very high (dis)agreement): very high agreement, a median of 5 and an IQR of 0 and ≥80% scoring a 4 or 5; high agreement, a median 5 and an IQR ≤1 and ≥80% scoring a 4 or 5; moderate agreement, a median of 4–5 and an IQR ≤2 and ≥60% scoring a 4 or 5; low agreement, a median of 4–5, and an (IQR ≤ 2 or ≥ 60% scoring a 4 or 5); no agreement, a median 4–5 otherwise or a median >2 and <4. For consensus on disagreement, reverse median with the same IQR requirements and disagreement percentages (van der Steen etal., 2014).²⁴

Definitions provided to the panel: Capacity: meaning capacity to play a role in the ACP process which can include decision-making capacity or other capacity needed at some point, such as to communicate values; Persons with dementia: may have young-onset (YOD) or late-onset (LOD) dementia of any type and stage of dementia regardless of capacities; Family: the family caregiver, other family member, other relative or friend who knows and represents the patient and possible other family caregivers, family members, relatives or friends; therefore, encompassing more than biological or other family relationships (we referred to family in a broad sense; avoiding the term caregiver); Representative or proxy: can be the family but also an appointed legally authorized person who does not know the person with dementia well to serve as a proxy or substitute decision maker or advocate for the person with dementia when unable to decide him- or herself; Healthcare teams and healthcare providers: can include healthcare professionals and social care professions (this definition added after comments of the panel).

Suppl B2 shows the phrasing of the interim recommendations that were revised during the process of achieving a consensus and the feedback provided to the panel.

Abbreviations: ACP = advance care planning; IQR = inter-quartile range.