scholarly journals Advance care planning for people with dementia: Ordinary everyday conversations

Dementia ◽  
2018 ◽  
Vol 18 (7-8) ◽  
pp. 3023-3035 ◽  
Author(s):  
Kay de Vries ◽  
Jenny Drury-Ruddlesden
Keyword(s):  
End Of Life ◽  
Family Member ◽  
Advance Care Planning ◽  
Planning Process ◽  
Developed Countries ◽  
Dementia Care ◽  
Care Planning ◽  
People With Dementia ◽  
Advance Care ◽  
Person With Dementia

Advance care planning for people with dementia has become a focus of dementia care policies in developed countries. In New Zealand, the framework for dementia care relies on the person with dementia having a level of competence to enable them to participate in the planning process. For people with dementia, it may be too late to initiate these discussions in terms of decision-making capacity. Consequently, decisions about end-of-life care for people with dementia are typically made by a family member who acts as a surrogate decision maker on behalf of the person with dementia. An exploratory qualitative study of 23 people who had been carers or provided support for a family member with dementia who had died within five years of the interview was undertaken. The overarching theme, ‘ordinary everyday conversations’, describes how informal conversations and discussions within the family relating to preferences at the end of life had been embedded in interactions within the families over years. Sub-themes revealed three important components enabling adherence to the prior wishes of the person with dementia through these conversations: knowing the person and belief in ‘doing the right thing’; the importance of Wills and Enduring Power of Attorney; and negotiating unexpected encounters. There is potential for families to be well prepared for the time when they may need to make decisions for the person with dementia based on ordinary everyday conversation that take place within families and throughout life. This study also suggests that more innovative approaches to making a Will may provide an important vehicle for expressing advanced care wishes.

Advance care planning and people with dementia

2018 ◽  
Author(s):  
Karen Harrison Dening
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Diagnostic Process ◽  
Clear Understanding ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care ◽  
Person With Dementia

Advance care planning (ACP) is widely recognised as a process to enable an individual’s preferences and wishes for palliative and end-of-life care to be recognized at a time when they no longer have the capacity to make such ‘real time’ and autonomous decisions. In dementia, it is essential that ACP be offered early in the diagnostic process and supported when the person still has the ability to do so. Often decisions about end-of-life care for a person with dementia are made in the later stages of the illness, at a point of transition or crisis and with the absence of a clear understanding of their wishes. Clinicians may then turn to family members in the assumption that they know what these would be, however, this is often not the case which can add undue pressure to families in distressing circumstances.

scholarly journals Couples affected by dementia and their experiences of advance care planning: a grounded theory study

2018 ◽  
Vol 40 (2) ◽  
pp. 439-460 ◽  
Author(s):  
Tony Ryan ◽  
Jane McKeown
Keyword(s):  
Grounded Theory ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Policy And Practice ◽  
Global Policy ◽  
Formal Service ◽  
People With Dementia ◽  
Advance Care ◽  
End Of Life Issues

AbstractGlobal policy places emphasis on the implementation and usage of advance care planning (ACP) to inform decision making at the end of life. For people with dementia, where its use is encouraged at the point of diagnosis, utilisation of ACP is relatively poor, particularly in parts of Europe. Using a constructivist grounded theory methodology, this study explores the ways in which co-residing couples considered ACP. Specifically, it seeks to understand the ways in which people with dementia and their long-term co-residing partners consider and plan, or do not plan, for future medical and social care. Sixteen participants were interviewed. They identified the importance of relationships in the process of planning alongside an absence of formal service support and as a result few engaged in ACP. The study recognises the fundamental challenges for couples in being obliged to consider end-of-life issues whilst making efforts to ‘live well’. Importantly, the paper identifies features of the ACP experience of a relational and biographical nature. The paper challenges the relevance of current global policy and practice, concluding that what is evident is a process of ‘emergent planning’ through which couples build upon their knowledge of dementia, their networks and relationships, and a number of ‘tipping points’ leading them to ACP. The relational and collective nature of future planning is also emphasised.

scholarly journals Which moral barriers and facilitators do physicians encounter in advance care planning conversations about the end of life of persons with dementia? A meta-review of systematic reviews and primary studies

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e038528
Author(s):  
Angela JJM Keijzer-van Laarhoven ◽  
Dorothea P Touwen ◽  
Bram Tilburgs ◽  
Madelon van Tilborg-den Boeft ◽  
Claudia Pees ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Systematic Reviews ◽  
Moral Dilemmas ◽  
Barriers And Facilitators ◽  
Care Planning ◽  
People With Dementia ◽  
Meta Review ◽  
Advance Care

Importance and objectiveConducting advance care planning (ACP) conversations with people with dementia and their relatives contributes to providing care according to their preferences. In this review, we identify moral considerations which may hinder or facilitate physicians in conducting ACP in dementia.DesignFor this meta-review of systematic reviews and primary studies, we searched the PubMed, Web of Science and PsycINFO databases between 2005 and 30 August 2019. We included empirical studies concerning physicians’ moral barriers and facilitators of conversations about end-of-life preferences in dementia care. The protocol was registered at Prospero (CRD42019123308).Setting and participantsPhysicians and nurse practitioners providing medical care to people with dementia in long-term and primary care settings. We also include observations from patients or family caregivers witnessing physicians’ moral considerations.Main outcomesPhysicians’ moral considerations involving ethical dilemmas for ACP. We define moral considerations as the weighing by the professional caregiver of values and norms aimed at providing good care that promotes the fundamental interests of the people involved and which possibly ensues dilemmas.ResultsOf 1347 studies, we assessed 22 systematic reviews and 51 primary studies as full texts. We included 11 systematic reviews and 13 primary studies. Themes included: (1) beneficence and non-maleficence; (2) respecting dignity; (3) responsibility and ownership; (4) relationship and (5) courage. Moral dilemmas related to the physician as a professional and as a person. For most themes, there were considerations that either facilitated or hindered ACP, depending on physician’s interpretation or the context.ConclusionsPhysicians feel a responsibility to provide high-quality end-of-life care to patients with dementia. However, the moral dilemmas this may involve, can lead to avoidant behaviour concerning ACP. If these dilemmas are not recognised, discussed and taken into account, implementation of ACP as a process between physicians, persons with dementia and their family caregivers may fail.

Advance care planning in different settings for people with dementia: A systematic review and narrative synthesis

2019 ◽  
Vol 17 (6) ◽  
pp. 707-719 ◽  
Author(s):  
Adele J. Kelly ◽  
Tim Luckett ◽  
Josephine M. Clayton ◽  
Liam Gabb ◽  
Slavica Kochovska ◽  
...  
Keyword(s):  
Systematic Review ◽  
Advance Care Planning ◽  
Future Research ◽  
Care Planning ◽  
People With Dementia ◽  
Future Care ◽  
Advance Care ◽  
Surrogate Decision ◽  
The Individual ◽  
Person With Dementia

AbstractBackgroundAdvance care planning (ACP) is identified as being an important process for people with dementia. However, its efficacy for improving outcomes relevant for the individual, carers and the health system has yet to be established.AimWe conducted a systematic review with the aims of testing the efficacy of ACP for people with dementia and describing the settings and population in which it has been evaluated.MethodsA search was completed of electronic databases in August 2016. Articles were included if they described interventions aimed at increasing planning for future care of people with dementia, delivered to the person with dementia, their carers and/or health professionals.ResultsOf 4,772 articles returned by searches, 30 met the inclusion criteria, testing interventions in nursing home (n= 16) community (n = 10) and acute care (n = 4) settings. Only 18 interventions directly involved the person with dementia, with the remainder focusing on surrogate decision-makers. In all settings, interventions were found effective in increasing ACP practice. In nursing homes, ACP was found to influence care and increase the concordance between end of life wishes and care provided. Interventions in the community were found to improve patient quality of life but were not shown to influence concordance.ConclusionFuture research should focus on ways to involve people with dementia in decision-making through supported means.

Making Advance Directives Visual: Introducing Young Adults to Advance Care Planning With Video-Recorded Advance Directives

2019 ◽  
Vol 25 (4) ◽  
pp. e44-e51
Author(s):  
Cameron Kiersch ◽  
Teddie Potter
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
End Of Life ◽  
Advance Care Planning ◽  
Advance Directive ◽  
Planning Process ◽  
Care Planning ◽  
Advance Care ◽  
Definition Of

The complexities surrounding the dying process may distort rational decision-making and impact care at the end of life. Advance care planning, which focuses on identifying the individual's definition of quality of life, holds great potential to provide clarity at the end of life. Currently, young adults are not the intended audience for advance care planning. A quality improvement project engaged 36 college-age adults in structured group advance care planning discussions and evaluated the perceived value of a self-recorded advance directive. Findings from a pre- and postintervention survey suggested that young adults welcomed a conversation about end-of-life care; they wished for more information and expressed that a video-recorded advance directive stimulated thoughts about their own definition of quality of life. Participants' improved self-perception of comfort, confidence, certainty, and knowledge regarding the advance care planning process and end-of-life care indicated young adults may be a willing and eager population for the expansion of advance care planning. In addition to directing advance care planning to a younger audience, a personal video-recorded advance directive may complement the current advance care planning process and aid individuals in defining their quality of life.

scholarly journals Relating to the end of life through advance care planning: Expectations and experiences of people with dementia and their family caregivers

Dementia ◽  
2022 ◽  
pp. 147130122110663
Author(s):  
Natashe Lemos Dekker ◽  
Sascha R Bolt
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Fine Tuning ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care ◽  
Life Care Planning

Background Dementia is widely considered a progressive condition associated with changes in cognitive capacities, which promotes the idea that people with dementia need to anticipate end-of-life care preferences. There is a growing body of interventions meant to support advance care planning (ACP) for people with dementia and their families. However, a deeper understanding of their experiences and expectations regarding planning the end of life is needed to inform ethically sound and person-centered ACP. This study explores how end-of-life care planning for people with dementia is experienced and perceived in practice. Methods We conducted a secondary analysis of qualitative data from in-depth interviews and ethnographic fieldwork. Participants included people with dementia living in the community or in nursing homes, family caregivers, and professional caregivers. During reflective sessions, the researchers moved back and forth between their original data and overarching topics related to ACP. Both performed deductive coding to filter relevant information from their data. Ongoing discussions allowed for the fine-tuning of themes. Results End-of-life care planning for people with dementia can encompass a paradox of control. While it may foster a sense of being in control, it may also feel like relinquishing control over future situations. It raises concerns regarding responsibility, as present, former and future wishes may not align. Family caregivers are often responsible for concrete end-of-life decision-making, prompting them to weigh previous wishes against present situations. Further, people with dementia may wish to focus on the present and distance themselves from the future. Discussion Advance decisions about end-of-life care are often decontextualized and people may find it difficult to oversee their future conditions and preferences. The widely recognized purpose of ACP to exert control over end-of-life care may need revision to match the needs of people with dementia while they are coping with their condition and an uncertain future.

A Worldwide Bibliometric Analysis of Publications on Advance Care Planning in the Past 3 Decades

2019 ◽  
Vol 37 (6) ◽  
pp. 474-480
Author(s):  
Chia-Jen Liu ◽  
Te-Chun Yeh ◽  
Ming-Hsuan Hsieh ◽  
Lin-Chung Woung ◽  
Sheng-Jean Huang ◽  
...  
Keyword(s):  
United States ◽  
End Of Life ◽  
Bibliometric Analysis ◽  
Advance Care Planning ◽  
Developed Countries ◽  
The United States ◽  
Research Field ◽  
Care Planning ◽  
The Past ◽  
Advance Care

Background: In recent decades, issues related to end-of-life care and advance care planning (ACP) have attracted popular attention. Advance care planning has been broadly discussed as one of the potential solutions to protect a patient’s rights, autonomy, and dignity at the end of life. To better understand publishing on this topic, we conducted this study to demonstrate the worldwide research productivity, trends, and citations of ACP in the past 3 decades by bibliometric analysis. Methods: Articles published on ACP were retrieved from the Web of Science Core Collection database, and the subject terms included “advance directive,” or “advance care planning.” Results: Overall, 2126 publications on ACP were retrieved until January 22, 2019. North America, Western Europe, and Australia were the most productive regions. The top 15 countries published 95.9% of the total number of articles. The United States accounted for approximately three-fifths (61.0%) of all publications. When adjusted for population size, Australia had the highest number of articles per million persons (6.64), followed by the Netherlands (6.14) and Belgium (4.61). The most productive authors were Sudore (n = 37), Deliens (n = 29), and Green (n = 24). Conclusions: The current study revealed that research in terms of publications on ACP has rapidly increased over the past 3 decades. Developed countries, especially the United States, were more concerned with the ACP research field than developing countries were.

scholarly journals Goals of Care Conversations and Subsequent Advance Care Planning Outcomes for People with Dementia

2021 ◽  
Vol 83 (4) ◽  
pp. 1767-1773
Author(s):  
Heather Ma ◽  
Rachel E. Kiekhofer ◽  
Sarah M. Hooper ◽  
Sarah Dulaney ◽  
Katherine L. Possin ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
Advance Care Planning ◽  
Perceived Usefulness ◽  
Care Planning ◽  
Goals Of Care ◽  
People With Dementia ◽  
Advance Care ◽  
End Of Life Decision ◽  
The Impact

Background: Advance care planning has been shown to improve end of life decision-making for people with dementia. However, the impact of goals of care conversations between people with dementia and their caregivers has not been characterized. Objective: In this study, we evaluate the association between goals of care conversations and advance care planning outcomes. Methods: Retrospective advance care planning measures were collected via a questionnaire administered to 166 caregivers after the death of the person with dementia for whom they provided care. Results: At time of death, the majority of decedents with dementia had advance directives, health care agents, and previous goals of care conversations with their caregiver. Goals of care conversations were significantly associated with the perceived usefulness of advance directives, the perceived adherence to advance directives, and decedent dying at their desired place of death, but not with disagreements around end-of-life care. Conclusion: Our findings suggest that goals of care conversations are an important component of advance care planning. These findings support the development of interventions that facilitate such conversations between people with dementia and their caregivers.

scholarly journals End of Life Care: A Scoping Review of Experiences of Advance Care Planning for People with Dementia

Dementia ◽  
2016 ◽  
Vol 18 (3) ◽  
pp. 825-845 ◽  
Author(s):  
Kerry Jones ◽  
Giles Birchley ◽  
Richard Huxtable ◽  
Linda Clare ◽  
Tony Walter ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Scoping Review ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care
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