{
  "abstract": "Aim We aim to present evidence and consensus-based clinical recommendations for optimal advance care planning (ACP) in dementia and to consider moving to a feasible, pragmatic approach.Background ACP is relevant with declining or fluctuating cognition such as in dementia, yet it is challenging to implement in practice. Specific guidance is needed for ACP conversations with persons with dementia and their care partners.Methods The European Association for Palliative Care conducted an international Delphi study with multiple literature reviews and four survey rounds to obtain a consensus on how to optimize advance care planning in dementia. A panel of 107 experts from 33 countries and seven individuals with young-onset dementia contributed. Level of consensus was evaluated for a comprehensive set of clinical recommendations on when to start and what elements to address. The panel also estimated how many conversations would be needed.Results There was a consensus to offer ACP around dementia diagnosis and raise end-of-life issues later. Thirty constitutive elements of ACP were identified by consensus (e.g., ‘assess understanding of ACP’-preferably in the first conversation; ‘tailor to the person’s capacity’-in every conversation). Only five elements were deemed ‘optional’ (e.g., to ‘decide on specific future care and treatment’). The panel estimated a median of four (Inter-Quartile Range 3) conversations are needed to address the elements, with no consensus about this being feasible. The advice of the persons with dementia indicated they had wished for a well-coordinated holistic approach.Discussion ACP is deemed important in dementia and should be raised at diagnosis followed by 30 elements of ACP defined by Delphi consensus. However, this might not be feasible or compatible with practice in many health care systems. Ideally, ACP is not a separate process but integrated in a person-centered approach and documented as a standard of care. Future studies should identify trade-offs between optimal ACP and feasible implementation to optimize overall impact of the guidance in practice.Unique Contribution We present a rigorous Delphi study on ACP in dementia that navigated ambiguities with experts from 33 countries. It sets a standard by providing a comprehensive set of best practice recommendations on optimal content and process for ACP for persons with dementia and their families.Implications The set of recommendations can serve as a framework for best practice and to consider optimally feasible implementation in countries from across the world, taking into account cultural sensitivities.",
  "authors": [
    {
      "affiliations": [
        "Department of Public Health and Primary Care (JTS, MN), Leiden University Medical Center, Leiden, The Netherlands",
        "Department of Primary and Community Care (JTS), Radboud University Medical Center, Nijmegen, The Netherlands and Cicely Saunders Institute, King's College London, UK"
      ],
      "name": "Jenny van der Steen"
    },
    {
      "affiliations": [
        "VUB-UGent End-of-Life Care Research Group (LB), Jette, Brussels, Belgium"
      ],
      "name": "Lieve van den Block"
    },
    {
      "affiliations": [
        "Department of Public Health and Primary Care (JTS, MN), Leiden University Medical Center, Leiden, The Netherlands",
        "Department of Psychiatric Nursing (MN), Tohoku University Graduate School of Medicine, Sendai-shi Miyagy, Japan"
      ],
      "name": "Miharu Nakanishi"
    },
    {
      "affiliations": [
        "Research & Publications, Dementia UK (KHD), London, UK",
        "Faculty of Health & Life Sciences (KHD), De Montfort University, Leicester, UK"
      ],
      "name": "Karen Harrison Dening"
    },
    {
      "affiliations": [
        "IMPACCT/School of Nursing and Midwifery (DP), Faculty of Health, University of Technology, NSW, Sydney, Australia"
      ],
      "name": "Deborah Parker"
    },
    {
      "affiliations": [
        "Palliative and Supportive Care Service and Institute of Higher Education and Research in Healthcare (PL), UNIL | Université de Lausanne, CHUV | Centre hospitalier universitaire Vaudois, Faculté de biologie et de médecine – FBM Institut universitaire de formation et de recherche en soins – Hôpital Nestlé, Lausanne, Switzerland"
      ],
      "name": "Philip Larkin"
    },
    {
      "affiliations": [
        "Department of Public Health Sciences and Pediatrics (PDG), Turin University, Turin, Italy"
      ],
      "name": "Paola Di Giulio"
    },
    {
      "affiliations": [
        "Institute for General Practice/Family Medicine (JS), Medical Faculty, University of Duisburg-Essen, Essen, Germany"
      ],
      "name": "Juergen in der Schmitten"
    },
    {
      "affiliations": [
        "University Psychiatric Hospital Vrap?e (NM), School of Medicine, University of Zagreb, Zagreb, Croatia"
      ],
      "name": "Ninoslav Mimica"
    },
    {
      "affiliations": [
        "Faculty of Humanities (IH), Centre of Expertise in Longevity and Long-Term Care and Centre of Gerontology, Charles University, Prague, Czech Republic"
      ],
      "name": "Iva Homerova"
    },
    {
      "affiliations": [
        "Universidade Católica Portuguesa (SMP), CEGE: Research Center in Management and Economics – Ethics and Sustainability Research Area, Católica Porto Business School, Porto, Portugal"
      ],
      "name": "Sandra Martins Pereira"
    },
    {
      "affiliations": [
        "Department of Public Health (IJK), Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands"
      ],
      "name": "Ida Korfage"
    },
    {
      "affiliations": [
        "Division of Geriatrics (RLS), Department of Medicine, University of California, San Francisco, CA, USA",
        "San Francisco Veterans Affairs Medical Center (RLS), San Francisco, CA, USA"
      ],
      "name": "Rebecca Sudore"
    }
  ],
  "title": "72 The optimal versus feasible approach of advance care planning in dementia",
  "uid": "7650cb01-4f2b-58d9-82a1-512900404b9c"
}