Longitudinal associations between subjective cognitive impairment, pain and depressive symptoms in home-dwelling older adults: Modelling within-person effects.

OBJECTIVES: Cognitive impairment, pain and depressive symptoms are common and interrelated factors in older adults. However, the directionality and specificity of their association remains unclarified. This study explored whether these factors prospectively increase reciprocal risk and examined the longitudinal association between these factors and quality of life (QoL). METHODS: This study used longitudinal data from The Older Persons and Informal Caregivers Survey Minimal Data Set (TOPICS-MDS; the Netherlands). Older adults self-reported cognitive impairment, pain, depressive symptoms and QoL at baseline and after 6 and 12 months of follow-up. The Random Intercept Cross-Lagged Panel Model was used to assess the prospective association between the three factors, while a multilevel linear regression analysis in a two-level random intercept model was used to examine the longitudinal associations between the three factors and QoL at the within-person level. RESULTS: The data of 11,582 home-dwelling older adults with or without subjective cognitive impairment were analysed. At the within-person level, pain at 6 months was associated with subsequent depressive symptoms (ß = 0.04, p = 0.024). The reverse association from depression to pain, and longitudinal associations between pain and subjective cognitive impairment and between depressive symptoms and subjective cognitive impairment were non-significant. Pain, depressive symptoms and subjective cognitive impairment showed a significant association with poor QoL 6 months later. CONCLUSIONS: A directional relationship was observed from pain to depressive symptoms. Pain reduction holds a potential benefit in the prevention of depressive symptoms, ultimately optimising the QoL of older adults.

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.

The effects of individual music therapy in nursing home residents with dementia to improve general well-being: study protocol of a randomized controlled trial.

BACKGROUND: Dementia is often associated with Neuropsychiatric Symptoms (NPS) such as agitation, depression, hallucinations, anxiety, that can cause distress for the resident with dementia in long-term care settings and can impose emotional burden on the environment. NPS are often treated with psychotropic drugs, which, however, frequently cause side effects. Alternatively, non-pharmacological interventions can improve well-being and maintain an optimal quality of life (QoL) of those living with dementia. Other QoL related outcomes, such as pain, discomfort and sleep disruption are relevant outcomes in music trials as well. Music therapy is a non-pharmacological intervention that can reduce NPS and improve well-being, and its associated symptoms in dementia. METHODS: The research will be conducted at eight nursing home facilities of a health care organization in the Netherlands. A sample size of 30 in each group (experimental and control group) is required, totalling 60 residents increased to 80 when considering expected drop out to follow up. The participants in the intervention group receive 30 min of individual music therapy (MT) in their own room by a music therapist twice a week for 12 weeks. The participants in the control group will receive 30 min of individual attention in their own room by a volunteer twice a week for 12 weeks. Assessments will be done at baseline, 6 weeks and 12 weeks. An independent observer, blinded for the intervention or control condition, will assess directly observed well-being (primary outcome) and pain (secondary outcome) before and after the sessions. Nurses will assess other secondary outcomes unblinded, i.e., perceived quality of life and NPS, both assessed with validated scales. The sleep duration will be indirectly assessed by a wrist device called MotionWatch. Information about psychotropic drug use will be derived from electronic medical chart review. DISCUSSION: The main purpose of this study is to assess the effects of individual music therapy on directly observed well-being controlled for individual attention in nursing home residents with dementia with NPS. The outcomes refer to both short-term and long-term effects consistent with therapeutic goals of care for a longer term. We hope to overcome limitations of previous study designs such as not blinded designs and music facilitators that were not only music therapists but also occupational therapists and nurses. This study should lead to more focused recommendations for practice and further research into non-pharmacological interventions in dementia such as music therapy. TRIAL REGISTRATION: The trial is registered at the International Clinical Trials Registry Platform (ICTRP) search portal in the Netherlands Trial Registration number NL7708, registration date 04-05-2019.

Noninvasive monitoring technologies to identify discomfort and distressing symptoms in persons with limited communication at the end of life: a scoping review.

BACKGROUND: Discomfort and distressing symptoms are common at the end of life, while people in this stage are often no longer able to express themselves. Technologies may aid clinicians in detecting and treating these symptoms to improve end-of-life care. This review provides an overview of noninvasive monitoring technologies that may be applied to persons with limited communication at the end of life to identify discomfort. METHODS: A systematic search was performed in nine databases, and experts were consulted. Manuscripts were included if they were written in English, Dutch, German, French, Japanese or Chinese, if the monitoring technology measured discomfort or distressing symptoms, was noninvasive, could be continuously administered for 4 hours and was potentially applicable for bed-ridden people. The screening was performed by two researchers independently. Information about the technology, its clinimetrics (validity, reliability, sensitivity, specificity, responsiveness), acceptability, and feasibility were extracted. RESULTS: Of the 3,414 identified manuscripts, 229 met the eligibility criteria. A variety of monitoring technologies were identified, including actigraphy, brain activity monitoring, electrocardiography, electrodermal activity monitoring, surface electromyography, incontinence sensors, multimodal systems, and noncontact monitoring systems. The main indicators of discomfort monitored by these technologies were sleep, level of consciousness, risk of pressure ulcers, urinary incontinence, agitation, and pain. For the end-of-life phase, brain activity monitors could be helpful and acceptable to monitor the level of consciousness during palliative sedation. However, no manuscripts have reported on the clinimetrics, feasibility, and acceptability of the other technologies for the end-of-life phase. CONCLUSIONS: Noninvasive monitoring technologies are available to measure common symptoms at the end of life. Future research should evaluate the quality of evidence provided by existing studies and investigate the feasibility, acceptability, and usefulness of these technologies in the end-of-life setting. Guidelines for studies on healthcare technologies should be better implemented and further developed.

Desired dementia care towards end of life: Development and experiences of implementing a new approach to improve person-centred dementia care.

AIMS: To describe the co-creation of the 'Desired Dementia Care Towards End of Life' (DEDICATED) approach to improve person-centred palliative care for individuals with dementia and to describe the experiences of healthcare professionals during the approach's implementation. METHODS: A needs assessment, comprising both qualitative and quantitative studies, informed palliative care needs of healthcare professionals, family caregivers and individuals with dementia. The approach was co-created with healthcare and education professionals, guided by the findings. Then, healthcare professionals were trained to implement the approach in their organizations. From April to June 2022, semi-structured interviews with actively engaged professionals were analysed using Conventional Content Analysis. RESULTS: The needs assessment yielded six key themes: (1) raising palliative care awareness, (2) familiarization with a person with dementia, (3) communication about future care preferences, (4) managing pain and responsive behaviour, (5) enhancing interprofessional collaboration in advance care planning and (6) improving interprofessional collaboration during transitions to nursing homes. Interviews with 17 healthcare professionals revealed that active involvement in co-creating or providing feedback facilitated implementation. Overall, the DEDICATED approach was perceived as a valuable toolkit for optimizing palliative care for people with dementia and their loved ones. CONCLUSION: Co-creating the DEDICATED approach with healthcare professionals facilitated implementation in daily practice. The approach was considered helpful in enhancing person-centred palliative dementia care. IMPACT STATEMENT: This study underscores the importance of active involvement of healthcare professionals in the research and development of new interventions or tools for palliative care, which can influence the successful implementation, dissemination and sustained usage of the developed tools. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: The developed approach can improve person-centred palliative care for individuals with dementia, ultimately improving their quality of life and that of their loved ones. REPORTING METHOD: This study used the Consolidated Criteria for Reporting Qualitative Research. PATIENT OF PUBLIC CONTRIBUTION: No patient or public contribution.

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

INTRODUCTION: 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. METHODS: 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. RESULTS: 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. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: 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.

The impact of the mySupport advance care planning intervention on family caregivers' perceptions of decision-making and care for nursing home residents with dementia: pretest-posttest study in six countries.

BACKGROUND: the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. OBJECTIVES: to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. DESIGN: a pretest-posttest design. SETTING: in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. PARTICIPANTS: in total, 88 family caregivers completed baseline, intervention and follow-up assessments. METHODS: family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. RESULTS: family caregivers reported less decision-making uncertainty (-9.6, 95% confidence interval: -13.3, -6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. CONCLUSIONS: the mySupport intervention may be impactful in countries beyond the original setting.

Supporting Resilience of Older Adults with Cognitive Decline Requires a Multi-Level System Approach.

The concept of resilience, i.e., the capacity of a system to bounce back after a stressor, is gaining interest across many fields of science, policy, and practice. To date, resilience research in people with cognitive decline has predominantly addressed the early stages of decline. We propose that: (1) resilience is a relevant concept in all stages of cognitive decline; and (2) a socio-ecological, multisystem perspective on resilience is required to advance understanding of, and care and support for people with cognitive decline and their support networks. We substantiate our position with literature and examples. Resilience helps understand differences in response to risk factors of (further) cognitive decline and informs personalised prevention. In a curative context, interventions to strengthen resilience aim to boost recovery from cognitive decline. In care for people with dementia, resilience-focused interventions can strengthen coping mechanisms to maintain functioning and well-being of the individual and their support network. A good example of improving resilience in the social and policy context is the introduction of age-friendly cities and dementia-friendly communities. Good care for people with cognitive decline requires a health and social care system that can adapt to changes in demand. Given the interdependency of resilience at micro-, meso- and macro-levels, an integrative socio-ecological perspective is required. Applying the concept of resilience in the field of cognitive decline opens new horizons for research to improve understanding, predicting, intervening on health and social care needs for the increasing population with cognitive decline.

Palliative care in advanced Huntington's disease: a scoping review.

BACKGROUND: As Huntington's disease (HD) is a progressive disease for which there is no cure yet, patients in the advanced stage of HD may benefit from palliative care. OBJECTIVE: To review the literature focusing on palliative care in advanced stage HD, and the level of evidence. METHODS: Publications between 1993 and October 29th, 2021 from 8 databases (Embase, Web of Science, Cochrane, Emcare, PsycINFO, Academic Search Premier, PMC PubMed Central and Pubmed) were included. The literature was deductively classified based on topics that are part of the definition of palliative care, or as care-related topics that emerged from the literature. Levels of evidence I (high) - V (low) were determined as defined by the Joanna Briggs Institute. RESULTS: Our search resulted in 333 articles, 38 of which were included. The literature covered four domains of palliative care: physical care, psychological care, spiritual care, and social care. Four other topics in the literature were: advance care planning, end-of-life needs assessments, pediatric HD care, and need for health care services. Most literature was underpinned by a low level of evidence, except for the topics on social care (Level III-V), advance care planning (Level II-V) and end-of-life needs assessments (Level II-III). CONCLUSIONS: To deliver adequate palliative care in advanced HD, both general and HD-specific symptoms and problems need to be addressed. As the level of evidence in existing literature is low, further research is essential to improve palliative care and to meet patient's wishes and needs.

Interventions that may increase control at the end of life in persons with dementia: the cross-cultural CONT-END acceptability study protocol and pilot-testing.

BACKGROUND: Interventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss of cognitive and physical function limits the ability to control care. To date, little is known about the acceptability of these interventions from the perspective of persons with dementia and others involved. This study will examine the cross-cultural acceptability, and factors associated with acceptability, of four end-of-life interventions in dementia which contain an element of striving for control. Also, we report on the development and pilot testing of animation video vignettes that explain the interventions in a standardized manner. METHODS: Cross-sectional mixed-methods vignette study. We assess acceptability of two ACP approaches, technology use at the end of life and euthanasia in persons with dementia, their family caregivers and physicians in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). We aim to include 80 participants per country, 50 physicians, 15 persons with dementia, and 15 family caregivers. After viewing each animation video, participants are interviewed about acceptability of the intervention. We will examine differences in acceptability between group and country and explore other potentially associated factors including variables indicating life view, personality, view on dementia and demographics. In the pilot study, participants commented on the understandability and clarity of the vignettes and instruments. Based on their feedback, the scripts of the animation videos were clarified, simplified and adapted to being less slanted in a specific direction. DISCUSSION: In the pilot study, the persons with dementia, their family caregivers and other older adults found the adapted animation videos and instruments understandable, acceptable, feasible, and not burdensome. The CONT-END acceptability study will provide insight into cross-cultural acceptability of interventions in dementia care from the perspective of important stakeholders. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful. TRIAL REGISTRATION: The CONT-END acceptability study was originally registered at the Netherlands Trial Register (NL7985) at 31 August, 2019, and can be found on the International Clinical Trials Registry Platform.

Measuring Pain in Aphasia: Validity and Reliability of the PACSLAC-D.

BACKGROUND: Post-stroke pain in patients with an inability to communicate is not systematically assessed and therefore not sufficiently treated. This stresses the need to study pain assessment instruments that do not require good communication skills. AIM: To examine the validity and reliability of the Pain Assessment Checklist for Seniors with Limited Ability to Communicate - Dutch version (PACSLAC-D) in stroke patients with aphasia. METHOD: Sixty stroke patients (mean age 79.3 years, standard deviation [SD] 8.0), of whom 27 had aphasia were observed during rest, activities of daily living (ADL), and physiotherapy using the Pain Assessment Checklist for Seniors with Limited Ability to Communicate - Dutch version (PACSLAC-D). The observations were repeated after two weeks. To examine convergent validity, correlations between the PACSLAC-D, self-report pain scales, and the clinical judgment of a health care professional (pain present yes/no) were used. To examine discriminative validity, differences in pain were investigated between rest and ADL, in patients who use pain medication and those who do not, and in patients with and without aphasia. Internal consistency and test-retest reliability were assessed to determine reliability. RESULTS: Convergent validity failed to meet the acceptable threshold during rest but was adequate during ADL and physiotherapy. Discriminative validity was only adequate during ADL. The internal consistency was 0.33 during rest, 0.71 during ADL, and 0.65 during physiotherapy. Test-retest reliability varied from poor during rest (intraclass correlation coefficient [ICC] = 0.07; 95% confidence interval [CI]: -0.40-0.51) to excellent during physiotherapy (ICC = 0.95; 95% CI: 0.83-0.98). CONCLUSIONS: The PACSLAC-D captures pain in patients with aphasia who are unable to self-report, during ADL and physiotherapy, but may be less accurate during rest.

Family involvement in euthanasia or Physician Assisted Suicide and dementia: A systematic review.

OBJECTIVE: To assess how families are involved in situations of euthanasia or physician assisted suicide (PAS) in dementia. DESIGN: Systematic review searching literature in nine databases from inception up to October 2021. We included studies on family involvement in euthanasia from the perspective of persons with dementia and family caregivers. Themes were formulated through thematic analysis. The design was registered at Prospero (CRD42022298215). RESULTS: We assessed 215 of 4038 studies in full text; 19 met the inclusion criteria of which 13 empirical studies. Themes included for people with dementia: being a burden; stage of dementia, and permissibility of euthanasia/PAS. Themes for family were the burden of care, responsibility toward the euthanasia or PAS wish, permissibility of euthanasia/PAS. CONCLUSION: The wish for euthanasia/PAS arises in situations of burdensome care and fear of future deterioration. The family feels entrusted with the responsibility to enact upon the death wish. In shaping this responsibility, four roles of family can be distinguished: carer, advocate, supporter, and performer. Family as in need of support themselves is understudied.

Fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers: a scoping review.

BACKGROUND: Nursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and competences. Only fragmented knowledge is available concerning important fundamentals in end-of-life communication performed by nursing staff. OBJECTIVE: This review aimed to explore the fundamentals of end-of-life communication as part of advance care planning in the hospital, nursing home and home care setting, from the perspective of the nursing staff, the older person, and the family caregiver. DESIGN: Scoping review. METHODS: A literature search in PubMed, PsycINFO, CINAHL and Google (Scholar) was conducted on August 20, 2022. The search strategy followed the sequential steps as described in the Joanna Briggs Institute Manual. Peer-reviewed articles of empirical research and gray literature written in English or Dutch and published from 2010 containing fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers in the hospital nursing home or home care setting were considered eligible for review. RESULTS: Nine studies were included, and four themes were composed, reflecting 11 categories. Nursing staff attunes end-of-life communication to the values and needs of older people to approach the process in a person-centered manner. This approach requires additional fundamentals: building a relationship, assessing readiness, timing and methods to start the conversation, communication based on information needs, attention to family relationships, a professional attitude, improving communication skills, listening and non-verbal observation skills, and verbal communication skills. CONCLUSIONS: This review is the first to compile an overview of the fundamentals of end-of-life communication performed by nursing staff. Building a nursing staff-older-person relationship is the most important foundation for engaging in a person-centered end-of-life communication process. Knowing each other enables nursing staff to have a sense of older people's readiness, determine the right timing to initiate an end-of-life conversation, identify specific needs, and accurately apply (non-)verbal observation skills. end-of-life communication is not a one-time conversation, but a complex process that takes time, effort, and genuine interest in each other.

[Evaluation of an information booklet on end-of-life care in dementia: a mixed-methods study assessing the preferences of family caregivers and healthcare professionals]. / Een 'mixed-methods' evaluatie-onderzoek naar voorkeuren van naasten en zorgprofessionals voor een handreiking over levenseindezorg bij dementie.

A booklet was developed in Canada in 2005 to inform family caregivers of people with dementia about end-of-life care. A Dutch version was published in 2011 after evaluation and revision. Developments in research and society call for a second revision. The aim of this study was to map out users' (family caregivers and healthcare professionals) preferences regarding the look and feel, and content of the booklet. To this end, in addition to the current paper booklet, we created a prototype website and app, along with three illustration options. Twenty-one family caregivers and nineteen healthcare professionals completed a questionnaire about their preferences. Open ended questions were analyzed using content analysis, multiple-choice questions using descriptive analysis. The participants valued the question-answer format. They perceived the text as too medically oriented and they expressed a need for more inclusive language and broader information. The participants found images of people suitable for the booklet and they preferred the illustrations to be less focused on the medical context. The participants preferred the paper booklet and a website. By understanding family caregivers' and healthcare professionals' preferences, in the second revision, the booklet can be tailored to the user. It is expected that this tailoring will support informing family caregivers about end-of-life care.

General practitioners' evaluations of optimal timing to initiate advance care planning for patients with cancer, organ failure, or multimorbidity: A health records survey study.

BACKGROUND: Appropriate timing to initiate advance care planning is difficult, especially for individuals with non-malignant disease in community settings. AIM: To identify the optimal moment for, and reasons to initiate advance care planning in different illness trajectories. DESIGN AND METHODS: A health records survey study; health records were presented to 83 GPs with request to indicate and substantiate what they considered optimal advance care planning timing within the 2 years before death. We used quantitative and qualitative analyses. SETTING AND PATIENTS: We selected and anonymized 90 health records of patients who died with cancer, organ failure or multimorbidity, from a regional primary care registration database in the Netherlands. RESULTS: The median optimal advance care planning timing according to the GPs was 228 days before death (interquartile range 392). This moment was closer to death for cancer (87.5 days before death, IQR 302) than for organ failure (266 days before death, IQR 401) and multimorbidity (290 days before death, IQR 389) (p < 0.001). The most frequently mentioned reason for cancer was "receiving a diagnosis" (21.5%), for organ failure it was "after a period of illness" (14.7%), and for multimorbidity it was "age" and "patients" expressed wishes or reflections' (both 12.0%). CONCLUSION: The optimal advance care planning timing and reasons to initiate advance care planning indicated by GPs differ between patients with cancer and other illnesses, and they also differ between GPs. This suggests that "the" optimal timing for ACP should be seen as a "window of opportunity" for the different disease trajectories.

Evaluating a partnership model of hospice enabled dementia care: A three-phased monitoring, focus group and interview study.

BACKGROUND: People with dementia and their caregivers often lack equitable access to hospice care which is a concern internationally. Domains of best practice in palliative care for this population exist and hospices are urged to become dementia friendly. AIM: This study aimed to evaluate the model of 'Hospice Enabled Dementia Partnership' mapped to international domains of best practice. DESIGN: Three-phased monitoring, group interview and individual interview study using a formative evaluation framework. SETTINGPARTICIPANTS: The partnership model was a collaboration between a large specialist palliative care hospice, a dementia charity and a Health Care Trust in the United Kingdom. Service documents were subjected to documentary review of monitoring activity and key indicators of service success. Group interviews and individual interviews took place with family carers (n = 12), health care professionals involved in delivering the service (n = 32) and senior professionals (n = 5) responsible for service commissioning in palliative or dementia care. RESULTS: One hundred people with dementia were referred to the service between May 2016 and December 2017. Thirty-eight of the 42 people who died, achieved their preferred place of care and died at home. Four themes were derived from the data 'Impact of Dementia', 'Value of the Service', 'Information and Learning Needs' and 'Working in Partnership'. CONCLUSIONS: Positive outcomes resulted from this best practice model; achievement of preferred place of care and death at home, dual benefits of therapies for patients and families and partnership in cross working and learning between services. Replication of this model should be considered internationally.

A family carer decision support intervention for people with advanced dementia residing in a nursing home: a study protocol for an international advance care planning intervention (mySupport study).

BACKGROUND: Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the Family Carer Decisional Support intervention is to inform family carers on end-of-life care options for a person living with advanced dementia and enable them to contribute to advance care planning. This implementation study proposes to; 1) adopt and apply the intervention internationally; and, 2) train nursing home staff to deliver the family carer decision support intervention. METHODS: This study will employ a multiple case study design to allow an understanding of the implementation process and to identify the factors which determine how well the intervention will work as intended. We will enrol nursing homes from each country (Canada n = 2 Republic of Ireland = 2, three regions in the UK n = 2 each, The Netherlands n = 2, Italy n = 2 and the Czech Republic n = 2) to reflect the range of characteristics in each national and local context. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. Our mixed methods study design has three phases to (1) establish knowledge about the context of implementation, (2) participant baseline information and measures and (3) follow up evaluation. DISCUSSION: The use of a multiple case study design will enable evaluation of the intervention in different national, regional, cultural, clinical, social and organisational contexts, and we anticipate collecting rich and in-depth data. While it is hoped that the intervention resources will impact on policy and practice in the nursing homes that are recruited to the study, the development of implementation guidelines will ensure impact on wider national policy and practice. It is our aim that the resources will be sustainable beyond the duration of the study and this will enable the resources to have a longstanding relevance for future advance care planning practice for staff, family carers and residents with advanced dementia.

Assessment of patient symptom burden and information needs helps tailoring palliative care consultations: An observational study.

OBJECTIVE: The objective of this study is to study (1) the relationship between patient-reported symptom burden and information needs in hospital-based palliative care and (2) differences in patient-reported needs during the disease trajectory. METHODS: Observational study: patient-reported symptom burden and information needs were collected via a conversation guide comprising assessment scales for 12 symptoms (0-10), the question which symptom has priority to be solved and a question prompt list on 75 palliative care-related items (35 topics, 40 questions). Non-parametric tests assessed associations. RESULTS: Conversation guides were used by 266 patients. Median age was 65 years (IQ-range, 57-72), 49% were male and 96% had cancer. Patients reported highest burden for Fatigue (median = 7) and Loss of appetite (median = 6) and prioritised Pain (26%), Fatigue (9%) and Shortness of breath (9%). Patients wanted information about 1-38 (median = 14) items, mostly Fatigue (68%), Possibilities to manage future symptoms (68%) and Possible future symptoms (67%). Patients also wanted information about symptoms for which they reported low burden. Patients in the symptom-directed phase needed more information about hospice care. CONCLUSION: Symptom burden and information needs are related. Patients often also want information about non-prioritised symptoms and other palliative care domains. Tailored information-provision includes inviting patients to also discuss topics they did not consider themselves.

Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan.

BACKGROUND: To support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005. METHODS: We analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care. RESULTS: The booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care. CONCLUSIONS: We identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts.

Cross-cultural conceptualization of a good end of life with dementia: a qualitative study.

BACKGROUND: Research on the nature of a "good death" has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models. METHODS: We combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies. RESULTS: Fourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: "Pain and Symptoms Controlled," "Being Provided Basic Care," and "A Place like Home." Other themes were "Having Preferences Met," "Receiving Respect as a Person," "Care for Caregivers," "Identity Being Preserved," "Being Connected," and "Satisfaction with Life and Spiritual Well-being." "Care for Caregivers" showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes. CONCLUSIONS: The common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model. TRIAL REGISTRATION: The Graduate School and Faculty of Medicine Kyoto University (R1924-1).