Advance Care Planning In Dementia Research Articles

A palliative care goals model for people with dementia and their family: Consensus achieved in an international Delphi study

Background: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life. Aim: To develop a multidimensional international palliative care goals model in dementia for use in practice. Design: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified. Setting/participants: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study. Results: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss−person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves. Conclusion: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research.

Advance Care Planning in the Context of Dementia: Defining Concordance.

Individuals with dementia may require a surrogate decision maker as their disease progresses. To prepare for this potential role, dementia care partners need to develop a thorough understanding of their care recipient's end-of-life values and preferences, or care dyad advance care planning (ACP) concordance. As part of our pilot study implementing the LEAD intervention with dementia care dyads, we conducted a multimethod investigation to define care dyad ACP concordance. We conducted a scoping review of peer-reviewed studies published after 1991 in English focusing on care dyad ACP concordance in dementia care and included 34 articles. Concurrently, we used descriptive qualitative analysis to analyze 7 dyadic ACP conversations from a pilot study about dyadic dementia ACP. The scoping review demonstrated (a) no definition of care dyad ACP concordance was reported; (b) surrogate accuracy in end-of-life decisions varies widely; and (c) best practices for ACP in dementia may aid in achieving ACP concordance, but do not prioritize it as an outcome. Qualitative analysis identified 7 elements for achieving concordance: Respect/Regard; use of Clarifying Processes; Conveying Health Care Scenarios; Affirmation of Understanding; Recognizing Uncertainty; Expression of Positive Emotions; and Trust. Care dyad ACP concordance occurs when care recipients and care partners both understand a care recipient's end-of-life values, understand the end-of-life preferences informed by those values, and the care partner expresses a willingness to accomplish the care recipient's wishes to the best of their ability. ACP concordance can be further operationalized for research and clinical care.

Consensus definition of advance care planning in dementia: A 33-country Delphi study.

Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.

'A perfect storm' or missed care? Focus group interviews with dementia care professionals on Advance Care Planning

BackgroundDementia is one of the leading causes of dependency and disability among older people and currently the seventh leading cause of death among all diseases. In recent years, healthcare research in Advance Care Planning in dementia care has received increased attention. Advance Care Planning is a discussion process conducted in anticipation of future deterioration of a person’s health condition. The purpose of the study was to investigate the views of dementia nurses and geriatricians on Advance Care Planning in dementia care.MethodsThe study design is a qualitative study using semi-structured focus group interviews with dementia care professionals in a region in Western Finland. A total of seventeen dementia care professionals participated. A modified version of the Qualitative Analysis Guide of Leuven was used for the data analysis.ResultsThe data analysis identified one main theme and three sub-themes describing the views of dementia nurses and geriatricians on Advance Care Planning in dementia care. The main theme was the ‘perfect storm’ with sub-themes relating to the person with dementia, the care process, and the care professional. The unfavorable circumstances creating a ‘perfect storm’ are related to the nature of the illness and the associated stigma, to the unclarity in the suggested care path with inadequate guidelines for Advance Care Planning, and to the demands placed on dementia nurses and geriatricians, as well as to insufficient resources.ConclusionsDementia nurses and geriatricians acknowledge the importance of advance directives and express a generally positive view of Advance Care Planning in dementia care. They also hold views on a number of factors which affect the conditions for conducting Advance Care Planning. The lack of Advance Care Planning in dementia care can be seen as a form of missed care caused by multiple forces coming together simultaneously.

Experiences with and perspectives on advance care planning in young- and late- onset dementia: A focus group study with physicians from various disciplines.

Despite the relevance of advance care planning (ACP) for people with dementia, its uptake in this population is particularly low. Several challenges for ACP in dementia have been identified from physicians' perspectives. However, the literature available mainly includes general practitioners and focuses exclusively on the context of late-onset dementia. This is the first study to inquire physicians from four highly relevant specialisms in dementia care, with a focus toward potential specificities based on patients' age. The research question of this study is: "What are physicians' experiences with and perspectives on discussing ACP with people with young- and/or late-onset dementia?". Five online focus groups were conducted with 21 physicians (general practitioners, psychiatrists, neurologists and geriatricians) in Flanders, Belgium. Verbatim transcripts were analyzed through the qualitative method of constant comparative analysis. Physicians believed that the societal stigma related to dementia influences people's reaction to their diagnosis, at times characterized by catastrophic expectations for the future. In this regard, they explained that the topic of euthanasia is sometimes addressed by patients very early in the disease trajectory. Respondents paid ample attention to actual end-of-life decisions, including DNR directives, when discussing ACP in dementia. Physicians felt responsible for providing accurate information on both dementia as a condition, and the legal framework of end-of-life decisions. Most participants felt that patients' and caregivers' wish for ACP was more driven by who their personality than by their age. Nonetheless, physicians identified specificities for a younger dementia population in terms of ACP: they believed that ACP covered more domains of life than for older persons. A high consistency regarding the viewpoints of physicians from differing specialisms was noted. Physicians acknowledge the added value of ACP for people with dementia and especially their caregivers. However, they face several challenges for engaging in the process. Attending to specific needs in young-onset, in comparison to late-onset dementia, requires ACP to entail more than solely medical domains. However, a medicalized view on ACP still appears to be dominant in practice as opposed to its broader conceptualization in academia.

Courage in Care Planning: Advance Care Planning Readiness in the Context of COVID19 for Caregivers of Individuals Living with Dementia

AbstractBackgroundCaregivers of individuals living with dementia frequently make medical decisions and develop care plans for future needs of care recipients, often without a clear understanding of those needs. For many, the COVID19 pandemic has exacerbated these challenges. Educational tools are needed to guide caregivers about when and how to raise the topic of advance care planning (ACP).MethodAs part of a larger study about the utility of video decision aids for ACP in dementia, caregivers of individuals living with dementia completed online surveys and watched educational videos about COVID19 and ACP. One day, one week and one month following watching the videos, we assessed ACP‐related knowledge, thoughts, readiness, plans, conversations, and actions in quantitative (validated ACP Engagement Survey) and through qualitative open‐ended questions. Forty‐six caregivers participated. For this analysis, we examined the subset of participants who were not at the most engaged level on the ACP engagement survey. We coded and conducted a content analysis of the open‐ended qualitative questions at one month follow up.ResultFrom pre‐post intervention, about 1/3 of participants increased their scores about ACP knowledge, thoughts, plans, and readiness to be a substitute decision‐maker or to make decisions for their loved one if they became very sick (possibly due to Covid). In particular, on one question (how ready are you to discuss with your loved one’s doctor whether or not there are certain health situations that would make your loved one’s life not worth living?), 74% of participants increased their engagement score pre‐ to post‐intervention. In qualitative analyses, 57% reported they engaged in ACP conversations after the intervention.ConclusionImmediately after the ACP video intervention, a substantial proportion of caregivers of individuals with dementia increased ratings of knowledge, confidence, and readiness to participate in ACP plans, conversations, and actions for their loved one. One month after the intervention, more than half engaged in ACP conversations. In future research, we will examine participant’s characteristics (e.g., dementia stage of loved one) in relationship to ACP Engagement responses. We plan to evaluate whether exposure to ACP video educational tools increases caregiver confidence in planning for healthcare decisions.

A feasibility study of a decision aid to support family carers of people with severe dementia or those towards the end-of-life

Background: Advance care planning in dementia does not always happen. As dementia progresses, decisions are often left for family carers to make with professionals. Aim: To test the feasibility and acceptability of the delivery and use of a decision aid for family carers of people with severe dementia or towards the end-of-life. Design: Feasibility study using a before-after design of a paper-based decision aid with family carers of people with severe dementia or towards the end-of-life. Criteria for whether to progress to full evaluation included achieving: 70% recruitment rate of target of 30 people, and retention of 70% at 6 months. Outcome measures at baseline, 3 and 6 months, included: the Decisional Conflict Scale (DCS), Kessler Psychological Distress Scale (K10), EQ5D-5L and Satisfaction with Care at the End of Life (SWC-EOLD). Participants: Twenty-eight family carers were recruited (93% of target), 26 completed baseline assessment and 20 (71%) of those were followed-up at 6 months. Results: Almost all outcomes changed indicating improvement over 6 months. The DCS and K10 scores decreased indicating less decisional conflict and less psychological distress. The decision aid was acceptable, 25% found it very helpful and 55% a little helpful at 6 months. Conclusion: We met the success criteria demonstrating this study was feasible and acceptable to carers. Future research should test the effectiveness of the decision aid in a full scale evaluation.

Palliative care for older people with dementia-we need a paradigm shift in our approach.

Older people with dementia have multiple palliative care needs, with pain, agitation, dyspnoea, aspiration and pressure ulcers being common and persistent in advanced dementia. Anticipating the person’s possible symptoms requires knowledge of the whole person, including the type of dementia, which is problematic when the dementia type is often not documented.A palliative care approach to dementia should look at symptoms across the four pillars of palliative care, but in reality, we tend to over-focus on physical and psychological symptoms, while spiritual and emotional needs can be overlooked, especially around the time of diagnosis, where such needs may be significant.Advance care planning (ACP) is a central tenet of good dementia palliative care, as the person may lose their ability to communicate and make complex decisions over time. Despite this, care planning is often approached too late, and with the person’s family rather than with the person; much of the literature on ACP in dementia is based on proxy decision-making for people in residential care.Thus, we need a paradigm shift in how we approach dementia, beginning with timely diagnosis that includes the dementia type, and with services able to assess and meet emotional and spiritual needs especially around the time of diagnosis, and with timely ACP as an integral part of our overall approach.

Creation of a Latin-American Dementia Advance Care Planning Guide

The LEAD Guide (Life-Planning in Early Alzheimer’s and Dementia) is an advance care planning conversation guide for use within the context of dementia (Dassel et al., 2019). Considering that Latino adults have the highest risk of ADRD, a culturally sensitive and translated Spanish version of the LEAD Guide was needed. Therefore, the objective of this study was to: 1) translate the LEAD Guide into a Latin-American Spanish version (i.e., LA LEAD) and 2) assess the applicability and acceptability of the LA LEAD through focus groups with Latino older adults. First, the LEAD Guide was translated into a “neutral” Spanish version. Second, forward and backward translation was conducted to create the LA LEAD. Third, two 1.5-hour focus groups with Spanish-speaking Latino adults age 50+ who were: a) healthy adults (N=7) or b) current or previous dementia caregivers (N=7) were held. The focus groups were recorded, translated, and transcribed for descriptive analysis, which revealed three domains regarding the LA LEAD: 1) Family Dynamics: the guide could help prevent family conflict, designate a health care proxy, and reduce burden; 2) Cultural Expectations: acknowledgement of cultural nuances between LA countries, the familial responsibility of caring for family in the home, and the influence of religion on end-of-life care decisions, and 3) Health Literacy: lack of knowledge about advance care planning conversations, documentation, and dissemination. This process resulted in the creation of a validated LA LEAD Guide, which is a culturally and linguistically appropriate and acceptable advance care planning tool for Latino older adults.

Creation of a Latin-American Dementia Advance Care Planning Guide

American Heart Association’s (AHA) Life’s Simple 7 (LS7), an index of cardiovascular health risks, has been associated with worse brain outcomes but few examined this relationship in midlife. We examined whether LS7 scores at midlife were associated with brain morphometry in early old age. Participants were 471 men who participated in the Vietnam Era Twin Study of Aging. The LS7 index was assessed at mean age 62 (range 55-66) and 68 (range 61-71) and included smoking, physical activity, diet, body mass index, cholesterol, glucose, and blood pressure. Each factor was coded, per AHA criteria, on a 3-point scale (0/poor-2/ideal) and summed to create a composite score (0-14). At mean age 68, participants underwent structural magnetic resonance imaging, which was used to create the previously validated brain measures. Scores included: the ratio of abnormal white matter to white matter, and two Alzheimer’s disease brain signatures (cortical thickness/volume signature and a mean diffusivity (MD) signature). Analyses controlled for age, education, income, ethnicity, and APOE genotype. Concurrently at mean age 68, the LS7 was associated with cortical thickness/volume (F=4.85, p = .028), MD (F=10.89, p = .001) signatures and abnormal white matter ratio (F=14.04, p < .001). Prospectively, the LS7 at mean 62 was significantly associated with age 68 cortical thickness/volume (F=5.08, p = .025) and MD (F=5.54, p = .019) signatures but not with abnormal white matter ratio. These results suggest that prevention strategies that promote heart healthy behaviors could have implications for healthy brain aging.

Advance care planning in dementia: having a voice

Advance care planning in dementia: having a voice

Advance care planning in dementia: a qualitative study of Australian general practitioners.

As the population ages, so does the prevalence of dementia, a condition in which timely advance care planning (ACP) is recommended. This study explored the barriers and enablers of ACP for Australian GPs caring for people with dementia. Semi-structured qualitative telephone interviews informed by the theoretical domains framework (TDF) were conducted with 16 GPs from the south-east region of metropolitan Melbourne. The most prevalent domains of the TDF were: (1) environmental context and resources; (2) beliefs about consequences; and (3) social/professional role and identity. Further thematic analysis found that: (1) ACP was felt to be within the scope of general practice, but more so before the onset of dementia because lack of confidence in capacity assessment acted as a barrier once a diagnosis was made; (2) beliefs about the perceived benefits of ACP motivated GPs to engage patients in ACP; and (3) doctors felt that patients were often reluctant to discuss ACP, especially in the time-pressured context of the standard consultation. This study's use of the TDF provides direction for potential interventions to alleviate challenges faced by Australian GPs with ACP in dementia. Improving ACP in general practice may require a focus on public health campaigns to educate patients about the benefits of ACP before the onset of dementia. GPs' difficulty assessing a patient's decisional capacity may be addressed through skills development workshops.

'Too late or too soon': The ethics of advance care planning in dementia setting.

Advance care planning (ACP) is considered a pivotal aid in the decision-making process, especially for many people living with dementia, who inevitably will lose the capacity to make decisions at the end of life. In Italy, ACP has been recently regulated by law 219/2017, leading to the investigation of how physicians deal with ACP in dementia. In order to comprehend the perception of physicians who provide care for patients with dementia regarding ACP and to describe their difficulties and needs, this study presents the results of a qualitative research study performed within a local health authority in northern Italy. Data were collected by semi-structured interviews with 11 physicians dealing with patients with dementia and were analysed using interpretative phenomenological analysis. Four superordinate themes were identified, describing both the difficulties and challenges perceived by physicians in performing shared ACP in their daily activities. This study demonstrates that physicians experience troubles synchronizing the time of shared ACP with the more rapid development of dementia. Results also suggest that further training about communication on ACP is urgently required to ease the implementation of shared ACP. A broader involvement of institutions and other professionals is also important in spreading ACP among healthcare institutions.

Educating Dutch General Practitioners in Dementia Advance Care Planning: A Cluster Randomized Controlled Trial

ObjectivesAdvance care planning (ACP) is seldom initiated with people with dementia (PWD) and mainly focuses on medical end-of-life decisions. We studied the effects of an educational intervention for general practitioners (GPs) aimed at initiating and optimizing ACP, with a focus on discussing medical and nonmedical preferences of future care. DesignA single-blinded cluster randomized controlled trial. Setting and participantsIn 2016, 38 Dutch GPs (all from different practices) completed the study. They recruited 140 PWD, aged ≥65 years at any stage and with any type of dementia, from their practice. MethodsIntervention group GPs were trained in ACP, including shared decision-making and role-playing exercises. Control group GPs provided usual care. The primary outcome was ACP initiation: the proportion of PWD that had at least 1 ACP conversation documented in their medical file. Key secondary outcomes were the number of medical (ie, resuscitation, hospital admission) and nonmedical (ie, activities, social contacts) preferences discussed. At the 6-month follow-up, subjects' medical records were analyzed using random effect logistics and linear models with correction for GP clustering. Results38 GP clusters (19 intervention; 19 control) included 140 PWD (intervention 73; control 67). Four PWD (2.9%) dropped out on the primary and key secondary outcomes. After 6 months, intervention group GPs initiated ACP with 35 PWD (49.3%), and control group GPs initiated ACP with 9 PWD (13.9%) [odds ratio (OR) 1.99; P = .002]. Intervention group GPs discussed 0.8 more medical [95% confidence interval (CI) 0.3, 1.3; P = .003] and 1.5 more nonmedical (95% CI 0.8, 2.3; P < .001) preferences per person with dementia than control group GPs. Conclusions and ImplicationsOur educational intervention increased ACP initiation, and the number of nonmedical and medical preferences discussed. This intervention has the potential to better align future care of PWD with their preferences but because of the short follow-up, the GPs' long-term adoption remains unknown.

Advance care planning in dementia: recommendations for healthcare professionals.

The process of advance care planning in dementia is far from straightforward; as dementia progresses, the ability to consider future thoughts and actions becomes compromised, thus affecting decision-making abilities. Family carers find themselves increasingly in a position where they need to inform, or directly make, decisions on behalf of the person with dementia. This article discusses the context and importance of a palliative care approach and recommends rationales and strategies for healthcare professionals to support families affected by dementia to better plan for their future care.

Advance care planning in dementia: recommendations for healthcare professionals

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.

Barriers and facilitators for GPs in dementia advance care planning: A systematic integrative review.

BackgroundDue to the disease’s progressive nature, advance care planning (ACP) is recommended for people with early stage dementia. General practitioners (GPs) should initiate ACP because of their longstanding relationships with their patients and their early involvement with the disease, however ACP is seldom applied.AimTo determine the barriers and facilitators faced by GPs related to ACP with people with dementia.Data sourcesWe systematically searched the relevant databases for papers published between January 1995 and December 2016, using the terms: primary healthcare, GP, dementia, and ACP. We conducted a systematic integrative review following Whittemore and Knafl’s method. Papers containing empirical data about GP barriers and/or facilitators regarding ACP for people with dementia were included. We evaluated quality using the Mixed-Method-Appraisal-Tool and analyzed data using qualitative content analysis.ResultsTen qualitative, five quantitative, and one mixed-method paper revealed four themes: timely initiation of ACP, stakeholder engagement, important aspects of ACP the conversation, and prerequisites for ACP. Important barriers were: uncertainty about the timing of ACP, how to plan for an uncertain future, lack of knowledge about dementia, difficulties assessing people with dementia’s decisional capacities, and changing preferences. Facilitators for ACP were: an early start when cognitive decline is still mild, inclusion of all stakeholders, and discussing social and medical issues aimed at maintaining normal life.ConclusionDiscussing future care is difficult due to uncertainties about the future and the decisional capacities of people with dementia. Based on the facilitators, we recommend that GPs use a timely and goal-oriented approach and involve all stakeholders. ACP discussions should focus on the ability of people with dementia to maintain normal daily function as well as on their quality of life, instead of end-of-life-discussions only. GPs need training to acquire knowledge and skills to timely initiate collaborative ACP discussions.

Healthcare decision-making: past present and future, in light of a diagnosis of dementia.

End-of-life care policy in the UK states that all people should identify their needs, priorities and preferences for end-of-life care in the form of advance care planning. Advance care planning in dementia is less well developed than in some other disease groups such as cancer and, arguably, may be more complex. A person with dementia may lose the capacity to make decisions associated with advance care planning early in the course of the disease, requiring more involvement of family carers. This study explores the 'lived' context to health care decision-making of dyads (the person with dementia and their carer) in respect of past, present and future healthcare decision-making.

Correction: Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia?

[This corrects the article DOI: 10.1371/journal.pone.0159056.].

Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia?

Background and AimsWhen a person with dementia (PWD) has lost the ability to make treatment decisions, clinicians often rely on family carers to know and articulate these preferences with assumed accuracy. This study used the Life Support Preferences Questionnaire (LSPQ) to explore whether family carers’ choices show agreement with the end of life care preferences of the person with dementia for whom they care and what factors influence this.MethodsA cross-sectional study interviewing 60 dyads (a person with early dementia and preserved capacity and their family carer) each completing a modified LSPQ. We assessed how closely carers’ choices resembled the PWD’s preferences for treatment in three proposed health states: the here and now; severe stroke with coma; terminal cancer. Agreement between the PWD and their family carer responses was assessed using Kappa and Prevalence-Adjusted Bias-Adjusted Kappa (PABAK) statistics. We examined whether carer burden and distress, and relationship quality, influenced agreement.ResultsIn interviews PWD were able to indicate their treatment preferences across all three scenarios. In the here-and-now most wanted antibiotics (98%), fewer cardio-pulmonary resuscitation (CPR) (50%) and tube feeding (47%). In severe stroke and coma antibiotics remained the more preferred treatment (88%), followed by CPR (57%) and tube feeding (30%). In advanced cancer PWD expressed lower preferences for all treatments (antibiotics 68%; CPR 50%; tube feeding 37%). Carers’ choices were similar to the PWDs’ preferences in the here-and-now (71% (k = 0.03; PABAK = 0.4) with less agreement for future hypothetical health states. In severe stroke and coma carers tended wrongly to suggest that the PWD preferred more intervention (antibiotic, 67%; k = -0.022; PABAK = -0.60; CPR, 73%; k = 0.20; PABAK = -0.20, tube feeding, 66%; k = 0.25; PABAK = -0.12). In advanced cancer the agreement between PWD and carers was low (antibiotics; k = -0.03; PABAK = -0.52; CPR, k = -0.07; PABAK = -0.45; tube feeding; k = 0.20; PABAK = -0.22). However, both PWD and carers showed marked uncertainty about their preferences for end of life treatment choices. Relationship quality, carer distress and burden had no influence on agreement.ConclusionsThis study is the first to have used the LSPQ with PWD in the UK to consider treatment options in hypothetical illness scenarios. Key finding are that family carers had a low to moderate agreement with PWD on preferences for end of life treatment. This underscores how planning for care at the end of life is beset with uncertainty, even when the carer and PWD perceive the care-giving/receiving relationship is good. Families affected by dementia may benefit from early and ongoing practical and emotional support to prepare for potential changes and aid decision making in the context of the realities of care towards the end of life.