BackgroundAdvance care planning (ACP) is a continuous, dynamic process of reflection and dialogue between an individual, those close to them and their healthcare professionals, concerning the individual’s preferences and values concerning future treatment and care, including end-of-life care. Despite universal recognition of the importance of ACP for people with dementia, who gradually lose their ability to make informed decisions themselves, ACP still only happens infrequently, and evidence-based recommendations on when and how to perform this complex process are lacking. We aimed to develop evidence-based clinical recommendations to guide professionals across settings in the practical application of ACP in dementia care.MethodsFollowing the Belgian Centre for Evidence-Based Medicine’s procedures, we 1) performed an extensive literature search to identify international guidelines, articles reporting heterogeneous study designs and grey literature, 2) developed recommendations based on the available evidence and expert opinion of the author group, and 3) performed a validation process using written feedback from experts, a survey for end users (healthcare professionals across settings), and two peer-review groups (with geriatricians and general practitioners).ResultsBased on 67 publications and validation from ten experts, 51 end users and two peer-review groups (24 participants) we developed 32 recommendations covering eight domains: initiation of ACP, evaluation of mental capacity, holding ACP conversations, the role and importance of those close to the person with dementia, ACP with people who find it difficult or impossible to communicate verbally, documentation of wishes and preferences, including information transfer, end-of-life decision-making, and preconditions for optimal implementation of ACP. Almost all recommendations received a grading representing low to very low-quality evidence.ConclusionNo high-quality guidelines are available for ACP in dementia care. By combining evidence with expert and user opinions, we have defined a unique set of recommendations for ACP in people living with dementia. These recommendations form a valuable tool for educating healthcare professionals on how to perform ACP across settings.

Studies in adult populations have shown that symptoms of complicated grief (CG) constitute a form of bereavement-related distress distinct from symptoms of depression and anxiety. The purpose of this article is to replicate these findings in two samples of bereaved adolescents by investigating the latent structure of symptoms of CG, anxiety, and depression measured by self-report questionnaires. The first study (N=245) focuses on one of the most prevalent losses in adolescence, namely the death of a grandparent. In the second study (N=351) the authors further the examination of the distinctiveness question by inspecting not only the latent structure of CG, depression, and anxiety but also whether the distinctiveness of the emerging latent structure holds across subgroups of bereaved adolescents suffering different types of losses. Confirmatory factor analyses in both studies confirm the distinctiveness of CG from depression and anxiety in a younger population

The Inventory of Prolonged Grief for Children (IPG-C) and Inventory of Prolonged Grief for Adolescents (IPG-A) were developed to be able to assess symptoms of Prolonged Grief Disorder (PGD) among children and adolescents. In different samples, the internal consistency, temporal stability, and concurrent and construct validity of these questionnaires were found to be adequate. The IPG-C and the IPG-A can be used in research examining causes and consequences of PGD, and the effectiveness of bereavement interventions for children and adolescents. This study provides further evidence of the existence and clinical significance of PGD symptoms among children and adolescents and supports the inclusion of a new category for bereavement-related disorders in DSM-5.

There is a need for more in-depth research to understand the lived experience of these parents and what health-care providers can do to assist them.