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Due 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. To determine the barriers and facilitators faced by GPs related to ACP with people with dementia. We 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. Ten 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. Discussing 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.

Background ACP enables individuals to define and discuss goals and preferences for future medical treatment and care with family and healthcare providers, and to record these goals and preferences if appropriate. Because general practitioners (GPs) often have long-lasting relationships with people with dementia, GPs seem most suited to initiate ACP. However, ACP with people with dementia in primary care is uncommon. Although several barriers and facilitators to ACP with people with dementia have already been identified in earlier research, evidence gaps still exist. We therefore aimed to further explore barriers and facilitators for ACP with community-dwelling people with dementia. Methods A qualitative design, involving all stakeholders in the care for community-dwelling people with dementia, was used. We conducted semi-structured interviews with community dwelling people with dementia and their family caregivers, semi structured interviews by telephone with GPs and a focus group meeting with practice nurses and case managers. Content analysis was used to define codes, categories and themes. Results Ten face to face interviews, 10 interviews by telephone and one focus group interview were conducted. From this data, three themes were derived: development of a trust-based relationship, characteristics of an ACP conversation and the primary care setting. ACP is facilitated by a therapeutic relationship between the person with dementia/family caregiver and the GP built on trust, preferably in the context of home visits. Addressing not only medical but also non-medical issues soon after the dementia diagnosis is given is an important facilitator during conversation. Key barriers were: the wish of some participants to postpone ACP until problems arise, GPs’ time restraints, concerns about the documentation of ACP outcomes and concerns about the availability of these outcomes to other healthcare providers. Conclusions ACP is facilitated by an open relationship based on trust between the GP, the person with dementia and his/her family caregiver, in which both medical and non-medical issues are addressed. GPs’ availability and time restraints are barriers to ACP. Transferring ACP tasks to case managers or practice nurses may contribute to overcoming these barriers.

Background Advance care planning (ACP) is becoming increasingly important in medical care. Some suggest standardized approaches to initiate ACP with all older adults. However, the idea of patient-centered care suggests more nuanced approaches tailored to individual older adults’ needs. This study investigated how older adults with different views and needs about ACP can be approached in an adequate and most beneficial way by health care professionals. Methods We used questionnaires, interviews, focus groups and informal conversations with older adults, living in their own homes, who volunteered to take part in our research. The research was participatory as we collaborated closely with practice partners and we used the obtained findings immediately and continuously to inform the next steps of our research throughout the process. Results We identified three subgroups of older adults with differential needs regarding ACP-related activities: The first group avoids talking about their needs and wishes for care towards the end of life. These older people benefit from activities, which aim at motivating them to concern themselves with ACP-related topics. The second group consists of older adults who are in principle open for ACP-conversations but do not initiate these themselves. This group either trusts their next-of-kin or their healthcare professional to act in accordance with their wishes or does not bring up the topic in order to avoid confronting relevant others with possibly unpleasant topics. This group of people benefits from information about ACP and from healthcare professionals initiating the ACP process. The third group of older people initiates the ACP process themselves, gathers information, and takes the necessary steps for ACP. With this group it remains relevant to check carefully whether they have indeed taken all relevant steps and shared the information with all relevant involved care institutions and relatives. Conclusions We propose a model to simplify adjustments of ACP to individuals’ needs. Our suggested approach might contribute to increasing the motivation of older people to engage in ACP conversations if these are more closely related to their own needs. Further, it might also contribute to simplifying the individual shaping of the ACP process for healthcare professionals as our suggested model offers clear guidance for approaching different types of older people in different ways. The suggested approach may in future be used for training health care professionals in the conduct of ACP conversations.

ABSTRACT Introduction The increasing global cancer burden and advances in treatments have extended patients' life expectancy, leading to greater prognostic uncertainty and a higher demand for palliative care. Advance care planning (ACP) is essential in this context, ensuring that patients' future care aligns with their values and preferences. Oncology case managers, being nurses with specialized training, have emerged as key ACP conversationalists. This study explores the perspectives of healthcare professionals and patients on case managers as ACP conversationalists for advanced cancer patients. Methods A qualitative interview study was conducted with 12 patients who recently had an ACP conversation with their case managers and 12 healthcare professionals, including medical oncologists and case managers, at a university medical center in the Netherlands. Transcripts of semi‐structured interviews were analyzed using inductive thematic analysis. Results Three main themes emerged: (1) Trust as the foundation for effective ACP, where patients valued the casemanagers' familiarity and accessibility; (2) ACP aligns with the competencies and tasks of the casemanager, as their communication skills and disease knowledge were seen as strengths; (3) Challenges related to responsibility around treatment decisions and the reluctance of medical oncologists to relinquish control of the conversation. Both patients and professionals recognized the importance of casemanagers having ACP conversations. Conclusions Casemanagers are well‐positioned to lead ACP conversations in oncology care, offering trust, continuity, and expertise. Despite some concerns regarding responsibility and medical decision‐making, their role can improve the quality of ACP, supporting more personalized and timely palliative care.

ABSTRACTObjectivesThe coronavirus disease-2019 (COVID-19) pandemic and accompanying lockdown restrictions impacted social life significantly. We studied associations of sociodemographic factors, mental and social health markers, and brain structure with social health trajectories during the COVID-19 pandemic. DesignProspective longitudinal population-based cohort study. SettingCommunity-dwelling inhabitants of Rotterdam, the Netherlands. ParticipantsRepeated questionnaires including questions on social health were sent to Rotterdam Study participants from April 2020 onwards. Social health data at study baseline were available for 5017 participants (mean age: 68.7 ± 11.3; 56.9% women). MeasurementsDeterminants were assessed in routine Rotterdam Study follow-up (1990–2020), including global brain volumes in a subset of participants (N = 1720). We applied linear mixed models and generalized estimating equations to quantify associations between determinants and trajectories of loneliness, perceived social isolation and social connectedness over three time points from April 22nd to July 31st 2020. ResultsLoneliness prevalence was 27.9% in April 2020 versus 12.6% prepandemic. Social isolation (baseline mean 4.7 ± 2.4) and loneliness scores (baseline mean 4.9 ± 1.5) decreased over time, whereas social connectedness trajectories remained stable. Depressive symptoms, female sex, prepandemic loneliness, living alone, and not owning a pet were independently associated with lower social connectedness and higher social isolation and loneliness at COVID-19 baseline, but recovery of social health was similar for all determinants. Larger intracranial volume was associated with higher social connectedness. ConclusionsDespite baseline differences for specific determinants, older adults showed similar recovery of loneliness and social isolation alongside stable social connectedness over time during the pandemic. Social health is multidimensional, especially during a global health crisis.

Background Persons with dementia frequently experience mealtime behavioral problems that can result in reduced or lack of intake of food or fluids. Multiple underlying causes and expressions of mealtime behavioral problems complicate its interpretation and intervention, because problems originating from cognitive and functional decline and behavioral changes may interact. Healthcare professionals and family caregivers may encounter a variety of practical and moral dilemmas in dealing with these problems. We aimed at a better understanding of mealtime behavioral problems and related complex issues in nursing home residents with dementia from a daily practice perspective. Methods We used a mixed-method Group Concept Mapping approach in this study, and collected data online with a panel of 67 healthcare professionals, researchers and relatives from across The Netherlands. The participants contributed to either or all of the following phases: (1) the generation of ideas (brainstorm), (2) sorting, and (3) rating of the ideas. Subsequent phases included data analysis with Groupwisdom ® software and interpretation of the results. Multidimensional scaling and hierarchical cluster analysis resulted in a concept map visualizing the coherence and importance of ideas. Bridging values were calculated, with low values indicating a distinct, clear concept. Results Brainstorming resulted in 285 statements representing 85 ideas. The concept map visualized three categories capturing ten clusters which describe the management of mealtime behavioral problems, causes of mealtime behavioral problems, and expressions and interpretations of mealtime behavioral problems. Concepts reflecting direct consequences, ethical components, and considerations to handle challenging situations overlapped on the concept map with the highest bridging values (range 0.58–0.87). Conclusion This study added to unraveling the complex nature of mealtime behavioral problems, as perceived in practice. It is recommended to comprehensively analyze all components in the management of these problems, in particular being aware of ethical factors and align care for residents with dementia accordingly.

Older people suffering from frailty often receive fragmented chronic care from multiple professionals. According to the literature, there is an urgent need for coordination of care. The objective of this study was to investigate the effectiveness of an online health community (OHC) intervention for older people with frailty aimed at facilitating multidisciplinary communication. The design was a controlled before-after study with 12 months follow-up in 11 family practices in the eastern part of the Netherlands. Participants consisted of frail older people living in the community requiring multidisciplinary (long-term) care. The intervention used was the health and welfare portal (ZWIP): an OHC for frail elderly patients, their informal caregivers and professionals. ZWIP contains a secure messaging system supplemented by a shared electronic health record. Primary outcomes were scores on the Instrumental Activities of Daily Living scale (IADL), mental health, and social activity limitations. There were 290 patients in the intervention group and 392 in the control group. Of these, 76/290 (26.2%) in the intervention group actively used ZWIP. After 12 months follow-up, we observed no significant improvement on primary patient outcomes. ADL improved in the intervention group with a standardized score of 0.21 (P=.27); IADL improved with 0.50 points, P=.64. Only a small percentage of frail elderly people in the study intensively used ZWIP, our newly developed and innovative eHealth tool. The use of this OHC did not significantly improve patient outcomes. This was most likely due to the limited use of the OHC, and a relatively short follow-up time. Increasing actual use of eHealth intervention seems a precondition for large-scale evaluation, and earlier adoption before frailty develops may improve later use and effectiveness of ZWIP.

In vascular dementia, living with post-stroke conditions (Tang et al.) combined with memory impairment can have negative effects on the stroke-survivor and their family when they are discharged from hospital and return at home. Case management can also positively impact carers' quality of life (10). 4.ClagueFMercerSWMcLeanGReynishEGuthrieB.Comorbidity and polypharmacy in people with dementia: insights from a large, population-based cross-sectional analysis of primary care data.Age Ageing. (2015)16:800.e1–8.10.1016/j.jamda.2015.06.01126170035 11.RichtersANieuwboerMSOlde RikkertMGMMelisRJFPerryMvan der MarckMA.Longitudinal multiple case study on effectiveness of network-based dementia care towards more integration, quality of care, and collaboration in primary care.PLoS ONE.