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Table 3 Recommendations

From: Advance care planning in dementia: recommendations for healthcare professionals

  Recommendationsa Quality of the recommendation, according to GRADEb
Domain 1 Initiation of ACP  
 1 Start ACP as early as possible and integrate ACP into the daily care of people living with dementia [10, 37, 106] [11, 38,39,40,41,42,43,43] Specific key moments might be:
- the period around the diagnosis of dementia [39, 44] - when discussing the general care plan
- when changes occur in the health status, place of residence or financial situation [45]
 2 Be alert for triggers and opportunities to start ACP and make use of any opportunity to talk about ACP [46, 47] 1C
 3 The healthcare professional should initiate ACP conversations if the person living with dementia and/or those close to them do not do this themselves [37, 44,45,46,47] [38, 45,46,47,48] 1C
 4 Consider the person as an individual and consider their specific situation when starting ACP conversations [43, 49] 1C
Domain 2 Evaluation of mental capacity  
 5 Always assume maximal mental capacity [50, 51] 1C
 6 Consider mental capacity as a fluctuating rather than static condition [52], and stay alert for signs of loss of capacity 1C
 7 Judge mental capacity task-specifically i.e. for a certain decision at a particular moment in time [11, 50, 51] 1C
 8 Always stay in contact with the person him/herself and ensure their maximum participation [1] 1C
 9 Assess mental capacity through formal clinical assessment:
- where there is doubt or disagreement between healthcare professionals and/or family
- when the decisions can have far-reaching consequences
- preferably by a multidisciplinary or interdisciplinary team with experience in dementia
Domain 3 Performing ACP conversations  
 10 Adjust conversation style and content to the person’s level and rhythm [59] 1C
 11 Explore who the significant people in their life are and who can be involved in the ACP conversations, and explore who can become their legal representative [47, 52, 61] 1C
 12 Lead the conversation but do not force it to become too formulaic or phased [59] 1C
 13 Explore the person’s disease awareness and their expectations, ideas and possible misconceptions concerning the disease trajectory [5] 1C
 14 Where someone lacks disease awareness or is reluctant to talk about ACP, do not insist [106, 63] 1C
 15 ACP conversations can best be held on several occasions and over a longer period of time [38, 106, 45] and cover several different topics such as the broader values of the person, their experience of the present and their fears about the future and the end of life, their future care goals, specific advance decisions about the end of life, advance directives 1C
 16 Try to understand the whole person living with dementia; explore their life story, important values, norms, beliefs and preferences [17, 26] 1C
 17 Explore the person’s current experiences; ask what is the perception of the person living with dementia of their quality of life? What are their fears and concerns? [25, 106, 52, 65] 1C
 18 Explore the person’s fears and concerns for the future and for the end of life [106] 1C
 19 If possible and desirable, guide the person in formulating their care goals [49, 66] 1C
 20 If possible and desirable, guide the persons with formulating specific wishes concerning specific end-of-life decisions [45] 1C
 21 Explore whether the person would like to have a written advance directive or if they have made one in the past [45] 1C
Domain 4 The role and importance of those close to them  
 22 Involve family or significant others as early as possible in the ACP process and inform them about the role of a surrogate decision-maker [11, 26, 41] 1C
 23 Evaluate their disease awareness and inform them about the expected disease trajectory and possible end-of-life decisions [17, 25, 43, 82, 83] 1C
 24 Pay attention to their perceptions during the ACP process [11, 26, 52, 65, 85] 1B
Domain 5 ACP when it is difficult or no longer possible to communicate verbally  
 25 Keep connected with the person living with dementia and ensure their maximum participation [1]: respond to their emotions, attend to non-verbal communication and observe their behaviour to know more about their current quality of life, fears and desires 1C
 26 Actively involve family and others close to them in the ACP process and the expression of care goals and wishes concerning end-of-life decisions [11, 26, 82] 1C
Domain 6 Documentation of wishes and preferences, including information transfer  
 27 Write down in the medical/care files of the person with dementia the outcomes of the ACP process, their values, preferences and care goals, and if applicable, the advance directive and legal representative [26, 87, 88] 1B
 28 Regularly re-evaluate as part of the ACP process; decisions can be revised at all times [17, 26, 47] 1C
 29 Communicate the outcomes of the ACP process within the care team, i.e. values, preferences and care goals, and if applicable advance directives or legal representatives, especially in the case of transfer to another care setting. NA*
Domain 7 End-of-life decision-making  
 30 Carefully weigh the wishes (expressed and/or written down earlier) against the current best interest of the person living with dementia, in consultation with those close to them and the healthcare professionals involved [83, 89, 90] 1C
Domain 8 Preconditions for optimal implementation of ACP  
 31 Provide enough training opportunities for healthcare professionals to learn how to conduct ACP conversations. Adequate support is essential in making healthcare professionals confident about engaging in ACP [11, 17, 26, 94, 114] 1C
 32 Integrate ACP into the mission and policy of the organization and embed it in the organizational culture [62, 91, 95,96,97] [61, 96,97,98] [62, 96,97,98] 1C
  1. NA Not applicable, ACP Advance care planning
  2. aRecommendations without references were added only by the experts and end users during the consensus procedure
  3. bGrading scores go from 1A to 2B, 1A representing a strong recommendation, based on a high level of evidence and 2C representing a weak recommendation and low to very low level of evidence. A grading score of 1C represents ‘strong recommendation but low to very low level of evidence’ meaning that this recommendation can be applied to patients and to care but may still change once higher-quality evidence is available. A grading score of 1B represents ‘strong recommendation and moderate level of evidence’ meaning that this recommendation has enough support for it to be applied in practice. More information on GRADE scores can be found on the website of the GRADE working group