Resilience in advanced cancer caregiving promoted by an intimate partner's support network: insights through the lens of complexity science. A framework analysis.

BACKGROUND: The tremendous physical and mental burden that comes with caregiving puts the intimate partners of patients diagnosed with advanced cancer at risk for mental disorders. However, most partners seem to be protected by resilience. Such a resilience process is promoted by certain individual characteristics (e.g., flexibility, positive attitude, internal strength, capacity to balance incoming and outgoing information, and ability to ask for and accept support and advice) and by the availability of a support network, consisting of family, friends, and healthcare professionals. Such a heterogeneous group striving towards the same goals can be considered a complex adaptive system (CAS), a concept stemming from complexity science. AIMS: To study the behavior of the support network through the lens of complexity science and to provide insights to the means by which an available network may promote resilience. METHODS: Nineteen interviews with members from the support networks of eight intimate partners were analyzed deductively using the CAS principles as a coding framework. Subsequently, the quotes under each principle were coded inductively to concretize patterns in the behavior of the support networks. Eventually, the codes were charted into a matrix to identify intra- and inter-CAS similarities, differences, and patterns. FINDINGS: The network's behavior adapts dynamically to the changing circumstances as the patient's prognosis worsens. Furthermore, the behavior is based on internalized basic rules (such as reassuring availability and maintaining communication without being intrusive), attractors (e.g., feeling meaningful, appreciated, or connected), and the history of the support network. However, the interactions are non-linear and often unpredictable due to the context member's own concerns, needs, or emotions. CONCLUSIONS: Applying the lens of complexity science to the behavior of an intimate partner's support network gives us insight into the network's behavioral patterns. Indeed, a support network is a dynamic system that behaves according to the principles of a CAS and adapts resiliently to the changing circumstances as the patient's prognosis worsens. Moreover, the behavior of the support network appears to promote the intimate partner's resilience process throughout the patient's care period.

Trapped in a double cage: How patients' partners experience the diagnosis of advanced cancer in times of the COVID-19 pandemic: An interpretative phenomenological analysis.

BACKGROUND: When confronting a partner's diagnosis of advanced cancer, family caregivers are often protected against severe psychological illness by their mental resilience. However, the current COVID-19 pandemic endangers this resilience through the daily threat of contagion exposure, viral transmission, isolation, and fear of death. AIM: To examine the experiences of partners caring for a person with advanced cancer during the COVID-19 pandemic. SETTING: Twelve partners (all under the age of 65) of persons newly diagnosed with advanced cancer immediately before or during the pandemic were interviewed. An interpretative phenomenological approach was used in analyzing the data. FINDINGS: Partners experience the COVID-19 pandemic as "living in a double cage." Due to pandemic mandates and restrictions, the pace of their lives slows. However, COVID-19 does not slow the progression of the cancer, nor does it allow for an escape from the cancer. The pandemic has a significant impact on several elements of resilience. Nevertheless, the participants succeed in adapting and coping in a balanced and creative way despite the new challenges imposed by the pandemic. CONCLUSION: The COVID-19 pandemic challenges one's resilience, a process that, under normal circumstances, may evolve while caring for a partner diagnosed with advanced cancer. Although most partners seem to cope adaptively with both advanced cancer and COVID-19, healthcare professionals should be aware of the risk of exhaustion. Furthermore, it can be presupposed that threatened, contextual factors that may support resilience should be preserved to increase the chances for a resilient outcome.

Resilience in advanced cancer caregiving. A systematic review and meta-synthesis.

BACKGROUND: Close relatives provide much of the care to people with cancer. As resilience can shield family caregivers from mental health problems, there has been a burgeoning interest in resilience-promoting interventions. However, the evidence necessary for the development of these interventions is scant and unsynthesized. AIM: To create an overall picture of evidence on resilience in cancer caregiving by a theory-driven meta-synthesis. DESIGN: In this systematically constructed review a thematic synthesis approach has been applied. The original findings were coded and structured deductively according to the theoretical framework. Consequently, the codes were organized inductively into themes and subthemes. DATA SOURCES: Through September 2019, five electronic databases were searched for qualitative studies on resilience in cancer caregiving. The search was extended by a supplementary hand search. Seventeen studies met the eligibility criteria. RESULTS: The elements of resilience, as described in the pre-defined theoretical framework of Bonanno, are reflected in the lived experiences of family caregivers. The resilience process starts with the diagnosis of advanced cancer and may result in mental wellbeing, benefit finding, and personal growth. The process is influenced by context elements such as individual history, sociocultural background, caregiver characteristics, and the behavior of the supportive network. A repertoire of coping strategies that caregivers use throughout the caregiving process moderates the resilience process. CONCLUSION: This review and theoretical synthesis reveal key elements of resilience in the process of cancer caregiving, including influencing factors and outcomes. Implications and avenues for further research are discussed.

Nursing home residents with suspected urinary tract infections: a diagnostic accuracy study.

BACKGROUND: Urinary tract infections (UTIs) are one of the most common infections in nursing homes (NHs). A high error rate of a UTI diagnosis based solely on clinical criteria is to be expected in older persons as they often present infections in an atypical way. A study was set up to assess the diagnostic value of signs/symptoms and urine dipstick testing in identifying UTIs in NH residents and to explore whether C-reactive protein (CRP) measured by point-of-care testing (POCT) can help in the diagnosis. METHODS: During a three month prospective multicentre study, urine sampling for culture, POCT CRP and urinary dipstick testing were performed in each NH resident with a suspected UTI. UTIs were defined according to Stone et al., i.e. criteria based upon the presence of a set of signs/symptoms and a positive urine culture. RESULTS: Eleven NHs and 1 263 residents participated. Sixteen out of 137 recorded UTI suspicions were confirmed. Acute dysuria (positive likelihood ratio (LR +): 7.56, 95% confidence interval (CI): 3.94-14.5) and acute suprapubic pain (LR + : 11.4, 95% CI: 3.58-35.9) were found to be significant predictors. The combined nitrite and leucocyte esterase urine dipstick test (one or both positive) had a 96.0% negative predictive value (95% CI: 80.5-99.3%). The sensitivity of a positive CRP test (≥ 5 mg/L) was 60.0% (95% CI: 32.3-83.7%). Antimicrobials were prescribed in 60.2% of suspected but unconfirmed UTIs and in 92.3% of confirmed UTIs. CONCLUSIONS: Using a stringent definition, only 11.7% of our suspicions were confirmed. Besides acute dysuria and suprapubic pain, we were not able to prove that any other clinical sign/symptom or POCT CPR adds useful information to the UTI diagnosis. We confirmed the findings of earlier research that urine dipstick tests are useful in ruling out UTIs and identified a potential overuse of antimicrobials in our NH population.

Resident and informal caregiver involvement in medication-related decision-making and the medicines' pathway in nursing homes: experiences and perceived opportunities of healthcare professionals.

BACKGROUND: Person-centered care has been shown to be beneficial for nursing home residents. The know-how and attitude of healthcare professionals, however, can make its implementation difficult. Also, research on person-centered care with regard to medication decision-making and the medicines' pathway in nursing homes is lacking. This study aimed to provide an understanding of healthcare professionals' attitudes and perspectives on current resident and informal caregiver involvement in medication decision-making and the medicines' pathway in nursing homes. METHODS: A qualitative, explorative study using semi-structured interviews with a sample of 25 healthcare professionals from four different nursing homes was performed. Interview transcripts were analyzed by means of an inductive thematic framework. RESULTS: Three overarching domains were identified: 1) features of, 2) drivers and barriers for, and 3) perceived consequences of resident and informal caregiver involvement in medication decision-making and the medicines' pathway. Involvement was mainly initiated by residents and informal caregivers themselves, pointing towards information and participation needs among both groups. Nevertheless, actions of healthcare professionals towards resident and informal caregiver involvement were mainly reactive and fragmentary. Their actions were influenced by the perception of residents and informal caregivers' desire and capabilities to be involved, the perception of their own professional role, but also by organizational factors such as the nursing home's philosophy. Furthermore, organizational concerns tempered the motivation to provide residents and informal caregivers with more medication-related responsibilities. CONCLUSIONS: Resident and informal caregiver involvement in medication decision-making and the medicines' pathway remains limited in nursing homes. Information and participation needs of residents and informal caregivers were not fully acknowledged by healthcare professionals. As such, we can conclude that there is a need for initiatives, both on an individual and on an organizational level, to create and improve awareness on opportunities to improve resident and informal caregiver involvement in medication decision-making and the medicines' pathway.

Assessment of oral health in older adults by non-dental professional caregivers-development and validation of a photograph-supported oral health-related section for the interRAI suite of instruments.

OBJECTIVES: An optimized oral health-related section and a video training were developed and validated for the interRAI suite of instruments. The latter is completed by professional non-dental caregivers and used in more than 40 countries to assess care needs of older adults. METHODS: The optimized oral health-related section (ohr-interRAI) consists of nine items and a video training that were developed in consecutive phases. To evaluate psychometric properties, a study was conducted in 260 long-term care residents. Each resident was assessed by a dentist and by four caregivers (two who received the video training, two who did not). RESULTS: Mean kappa values and percent agreement between caregivers and dentist ranged between κ = 0.60 (80.2%) for dry mouth and κ = 0.13 (54.0%) for oral hygiene. The highest inter-caregiver agreement was found for dry mouth with κ = 0.63 [95% CI: 0.56-0.70] (81.6%), while for the item palate/lips/cheeks only κ = 0.27 [95% CI: 0.18-0.36] (76.7%) was achieved. Intra-caregiver agreement ranged between κ = 0.93 [95% CI: 0.79-1.00] (96.4%) for dry mouth and κ = 0.45 [95% CI: 0.06-0.84] (82.8%) for gums. Logistic regression analysis showed only small differences between caregivers who watched the video training and those who did not. CONCLUSIONS: Psychometric properties of the optimized ohr-interRAI section were improved compared to previous versions. Nevertheless, particularly the items based on inspection of the mouth require further refinement and caregiver training needs to be improved. CLINICAL RELEVANCE: Valid assessment of oral health by professional caregivers is essential due to the impaired accessibility of regular dental care for care-dependent older adults.

Meanings of Care Convoys: The Structure, Function, and Adequacy of Care Networks Among Frail, Community-Dwelling Older Adults.

Researchers propose that the convoy of care model should be used to study care networks of frail, older individuals. Care convoys are defined as the evolving collection of individuals who may or may not have close personal connections to the recipient or to one another, but who provide care, including help with activities of daily living (ADLs) and instrumental activities of daily living (IADLs), socio-emotional care, skilled health care, monitoring, and advocacy. This study reports on community-dwelling older adults' experiences of their care convoy, how care convoys change over time, and perceived (positive) outcomes. A qualitative analysis among 65 semi-structured interviews with frail, community-dwelling older adults demonstrates a great variety in the composition of care convoys. Participants were often actively involved in their care convoy and valued the social/relational aspect of care. Care and support covered a wide range of activities, with some activities being provided by specific types of caregivers. Participants expressed the adequacy of their care convoy in terms of satisfaction and sufficiency. Noteworthy, participants who were satisfied with their care convoy did not necessarily receive sufficient help. Policies and practice should recognize the relational aspect of care, the complex interplay between all actors, and the dynamic character of care convoys.

Assessment of oral health conditions presented in photographs - is there a difference between dentists and non-dental professional caregivers?

BACKGROUND: Photographs can help non-dental professional caregivers to identify problems when inspecting the mouth of care-dependent older individuals. This study evaluated whether the assessment of oral health-related conditions presented in photographs differed between dentists and non-dental professional caregivers. MATERIALS AND METHODS: One-hundred-and-seventy-nine photographs were taken from long-term care facility residents and from patients at the Department of Dentistry of a University Hospital. The following oral health aspects were depicted: denture hygiene, oral hygiene, teeth, gums, tongue and palate/lips/cheeks. Collection continued until for each oral health aspect a pool of photographs was available that showed conditions from perfect health and hygiene to severe problems. A segmented Visual Analogue Scale was applied to assess the conditions presented in the photographs. Each photograph was assessed by each participant of this study. The benchmark was established by three dentists with academic-clinical expertise in gerodontology, special needs dentistry and periodontology. For each photograph, they provided a collective score after reaching consensus. Photographs were assessed individually by 32 general dentists and by 164 non-dental professional caregivers. Linear mixed effects models and generalized linear mixed effects models were fitted and mean squared errors were computed to quantify differences between both groups. RESULTS: For the different oral health aspects, absolute distances from the benchmark scores were 1.13 (95%CI:1.03-1.23) to 1.51 (95%CI:1.39-1.65) times higher for the caregivers than for the dentists. The odds to overestimate the condition were higher for the caregivers than the dentists for oral hygiene (OR = 0.72, 95%CI = 0.62-0.84) and teeth (OR = 0.74; 95%CI = 0.61-0.88). The odds to underestimate the condition were higher for the caregivers than the dentists for gums (OR = 1.39; 95%CI:1.22-1.59) and palate/lips/cheeks (OR = 1.22; 95%CI = 1.07-1.40). Over all assessments, the variance in caregiver scores was 1.9 (95%CI:1.62-2.23) times higher than that for the dentists. CONCLUSION: Small but significant differences were found between dentists and non-dental professional caregivers assessing oral health-related conditions presented in photographs. When photographs are used to aid non-dental professional caregivers with the oral health assessment, these visualizations should be complemented with comments to facilitate accurate interpretation.

A Better Understanding of the Concept "A Good Death": How Do Healthcare Providers Define a Good Death?

OBJECTIVE: The goal of palliative care is to improve quality of life when recovery is no longer possible. The study's objective was to widen our vision of potential (unspoken) needs at the end of life with patients, close relatives, nurses, and general practitioners to aim at more versatile but personal care. The question asked was how important patients, close relatives, and healthcare providers considered the 11 core themes in defining a good death, as described in the 2016 article "Defining a good death" by Meier et al. METHODS: Specific questionnaires for general practitioners, nurses, patients, and family members were distributed in the working area of the regional palliative care network, Aalst-Dendermonde-Ninove, with the cooperation of five local quality groups, two nursing homes, and two groups of home care nurses, and data were analyzed. RESULTS: Questionnaires were completed by 67 nurses, 57 general practitioners, 16 patients, and 8 family members. Although the 34 subthemes were generally considered important for classifying a death as a good one, there were still significant differences between general practitioners and nurses, men and women, and different age groups. Nurses found 9 of the 34 themes significantly more important than general practitioners. All groups believed a pain-free death was most important. General practitioners, nurses, patients, and close relatives found the following themes important: support of family, respect for patient as an individual, being able to say goodbye, and euthanasia in case of unbearable suffering. CONCLUSION: In agreement with the patient, medical care should focus on a pain-free situation during the last phase of life and not on exhausting possible treatments to prolong life unnecessarily. Appropriate care at the end of life can be broader, and all 34 subthemes can be important in early healthcare planning. Significant differences between general practitioners and nurses deserve attention because patients and family members expect that healthcare providers will work together as a team.

Concordances and differences between a unidimensional and multidimensional assessment of frailty: a cross-sectional study.

BACKGROUND: Many instruments to identify frail older people have been developed. One of the consequences is that the prevalence rates of frailty vary widely dependent on the instrument selected. The aims of this study were 1) to examine the concordances and differences between a unidimensional and multidimensional assessment of frailty, 2) to assess to what extent the characteristics of a 'frail sample' differ depending on the selected frailty measurement because 'being frail' is used in many studies as an inclusion criterion. METHOD: A cross-sectional study was conducted among 196 community-dwelling older adults (≥60 years), which were selected from the census records. Unidimensional frailty was operationalized according to the Fried Phenotype (FP) and multidimensional frailty was measured with the Comprehensive Frailty Assessment Instrument (CFAI). The concordances and differences were examined by prevalence, correlations, observed agreement and Kappa values. Differences between sample characteristics (e.g., age, physical activity, life satisfaction) were investigated with ANOVA and Kruskall-Wallis test. RESULTS: The mean age was 72.74 (SD 8.04) and 48.98% was male. According to the FP 23.59% was not-frail, 56.92% pre-frail and 19.49% frail. According to the CFAI, 44.33% was no-to-low frail, 37.63% was mild frail and 18.04% was high frail. The correlation between FP and the CFAI was r = 0.46 and the observed agreement was 52.85%. The Kappa value was κ = 0.35 (quadratic κ = 0.45). In total, 11.92% of the participants were frail according to both measurements, 7.77% was solely frail according to the FP and 6.21% was solely frail according to the CFAI. The 'frail sample respondents' according to the FP had higher levels of life satisfaction and net income, but performed less physical activities in comparison to high frail people according to the CFAI. CONCLUSION: The present study shows that the FP and CFAI partly measure the same 'frailty-construct', although differences were found for instance in the prevalence of frailty and the composition of the 'frail participants'. Since 'being frail' is an inclusion criterion in many studies, researchers must be aware that the choice of the frailty measurement has an impact on both the estimates of frailty prevalence and the characteristics of the selected sample.

The oral health-related section of the interRAI: Evaluation of test content validity by expert rating and assessment of potential reasons for inaccurate assessments based on focus group discussions with caregivers.

OBJECTIVES: To explore the failure of the oral health-related section of the interRAI (ohr-interRAI), this study investigated test content validity (A.) and reasons for inaccurate assessments (B.). BACKGROUND: Poor oral health negatively affects quality of life and is associated with a number of systemic diseases. The interRAI instruments, internationally used for geriatric assessment, should accurately detect oral conditions that require care. Previous research showed that the ohr-interRAI and related precursor versions do not achieve this goal. MATERIALS AND METHODS: (A.) A group of 12 experts rated completeness, relevance, clarity of wording and feasibility of the ohr-interRAI. Content validity indices were calculated per item (threshold 0.78). (B.) Focus group discussions with 23 caregivers were organized. A semi-structured question guide made sure that all topics of interest were covered. Qualitative content structuring analysis was applied after transcription. RESULTS: (A.) Experts agreed on the relevance of the items on chewing, pain, gingival inflammation and damaged teeth. They regarded none of the items as worded clearly and only prosthesis use and pain were considered to be assessable by untrained caregivers. All experts agreed that the ohr-interRAI was incomplete. (B.) Focus group discussions revealed that in the care environment oral health had low priority. Aspects related to the ohr-interRAI itself and aspects related to the assessment situation impeded the oral health assessment. The approach of the caregivers to complete the ohr-interRAI was inappropriate to accurately detect oral care needs. CONCLUSIONS: Findings challenge test content validity of the ohr-interRAI and reveal reasons for inaccurate assessments.

Interventions for frail community-dwelling older adults have no significant effect on adverse outcomes: a systematic review and meta-analysis.

BACKGROUND: According to some studies, interventions can prevent or delay frailty, but their effect in preventing adverse outcomes in frail community-dwelling older people is unclear. The aim is to investigate the effect of an intervention on adverse outcomes in frail older adults. METHODS: A systematic review and meta-analysis of Medline, Embase, the Cochrane Library, and Social Sciences Citation Index. Randomized controlled studies that aimed to treat frail community-dwelling older adults, were included. The outcomes were mortality, hospitalization, formal health costs, accidental falls, and institutionalization. Several sub-analyses were performed (duration of intervention, average age, dimension, recruitment). RESULTS: Twenty-five articles (16 original studies) were included. Six types of interventions were found. The pooled odds ratios (OR) for mortality when allocated in the experimental group were 0.99 [95% CI: 0.79, 1.25] for case management and 0.78 [95% CI: 0.41, 1.45] for provision information intervention. For institutionalization, the pooled OR with case management was 0.92 [95% CI: 0.63, 1.32], and the pooled OR for information provision intervention was 1.53 [95% CI: 0.64, 3.65]. The pooled OR for hospitalization when allocated in the experimental group was 1.13 [95% CI: 0.95, 1.35] for case management. Further sub-analyses did not yield any significant findings. CONCLUSION: This systematic review and meta-analysis does not provide sufficient scientific evidence that interventions by frail older adults can be protective against the included adverse outcomes. A sub-analysis for some variables yielded no significant effects, although some findings suggested a decrease in adverse outcomes. TRIAL REGISTRATION: Prospero registration CRD42016035429 .

Randomized controlled trial to evaluate a prevention program for frail community-dwelling older adults: a D-SCOPE protocol.

BACKGROUND: Frail community-dwelling older adults, whom might experience problems regarding physical, cognitive, psychological, social and environmental factors, are at risk for adverse outcomes such as disability, institutionalization and mortality. People in need of help do not always find their way to care and support services and are left undetected. The aim of the D-SCOPE project is to detect frail community-dwelling older adults who previously went unnoticed and to improve their access to care and support. Goal is to increase their frailty-balance, quality of life, meaning in life, life satisfaction, mastery, community inclusion and ageing well in place. METHODS/DESIGN: The study is a prospective, longitudinal randomized four-armed controlled trial with follow-up at 6 months. The study group aims to include 900 community-dwelling older adults aged 60 years and over from 3 municipalities in Flanders (Belgium). While selecting the study group, risk profiles for frailty will be taken into account. Participants will be randomly selected from the census records in each municipality. Data will be collected prospectively at baseline (T0) and at follow-up, 6 months after baseline (T1). At baseline, participants who are at least mild frail on one of the 5 domains of frailty (CFAI-plus) or feel frail based on the subjective assessment of frailty will be randomly assigned to (1) the study group or (2) the control group. A mixed method design with the inclusion of quantitative and qualitative data analyses will be used to evaluate the efficacy and experiences of the detection and prevention program on frailty. DISCUSSION: The study will contribute to an innovative vision concerning the organization of care and support, and a timely and accurate detection and support of community-dwelling older adults at risk for frailty. TRIAL REGISTRATION: This trial was registered at ClinicalTrials.gov, on May 26, 2017, identifier: NCT03168204 .

Detecting frail, older adults and identifying their strengths: results of a mixed-methods study.

BACKGROUND: The debate on frailty in later life focuses primarily on deficits and their associations with adverse (health) outcomes. In addition to deficits, it may also be important to consider the abilities and resources of older adults. This study was designed to gain insights into the lived experiences of frailty among older adults to determine which strengths can balance the deficits that affect frailty. METHODS: Data from 121 potentially frail community-dwelling older adults in Flemish-speaking Region of Belgium and Brussels were collected using a mixed-methods approach. Quantitative data were collected using the Comprehensive Frailty Assessment Instrument (CFAI), Montreal Cognitive Assessment (MoCA), and numeric rating scales (NRS) for quality of life (QoL), care and support, meaning in life, and mastery. Bivariate analyses, paired samples t-tests and means were performed. Qualitative data on experiences of frailty, frailty balance, QoL, care and support, meaning in life, and mastery were collected using semi-structured interviews. Interviews were subjected to thematic content analysis. RESULTS: The "no to mild frailty" group had higher QoL, care and support, meaning in life, and mastery scores than the "severe frailty" group. Nevertheless, qualitative results indicate that, despite being classified as frail, many older adults experienced high levels of QoL, care and support, meaning in life, and mastery. Respondents mentioned multiple balancing factors for frailty, comprising individual-level circumstances (e.g., personality traits, coping strategies, resilience), environmental influences (e.g., caregivers, neighborhood, social participation), and macro-level features (e.g., health literacy, adequate financial compensation). Respondents also highlighted that life changes affected their frailty balance, including changes in health, finances, personal relationships, and living situation. CONCLUSION: The findings indicate that frailty among older individuals can be considered as a dynamic state and, regardless of frailty, balancing factors are important in maintaining a good QoL. The study investigated not only the deficits, but also the abilities, and resources of frail, older adults. Public policymakers and healthcare organizations are encouraged to include these abilities, supplementary or even complementary to the usual focus on deficits.

Advance care planning in dementia: recommendations for healthcare professionals.

BACKGROUND: Advance 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. METHODS: Following 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). RESULTS: Based 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. CONCLUSION: No 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.

Identifying frailty risk profiles of home-dwelling older people: focus on sociodemographic and socioeconomic characteristics.

OBJECTIVES: This paper investigates risk profiles of frailty among older people, as these are essential for detecting those individuals at risk for adverse outcomes and to undertake specific preventive actions. Frailty is not only a physical problem, but also refers to emotional, social, and environmental hazards. METHODS: Using data generated from the Belgian Ageing Studies, a cross-sectional study (n = 28,049), we tested a multivariate regression model that included sociodemographic and socioeconomic indicators as well as four dimensions of frailty, for men and women separately. RESULTS: The findings indicated that for both men and women, increased age, having no partner, having moved house in the previous 10 years, having a lower educational level and having a lower household income are risk characteristics for frailty. Moreover, when looking at the different frailty domains, different risk profiles arose, and gender-specific risk characteristics were detected. DISCUSSION: This paper elaborates on practical implications, and formulates a number of future research recommendations to tackle frailty in an aging society. The conclusion demonstrates the necessity for a thorough knowledge of risk profiles of frailty, as this will save both time and money and permit preventive actions to be more individually tailored.

[A qualitative exploration of the chronic use of psychotropic drugs in nursing homes]. / Een kwalitatieve exploratie van het chronisch gebruik van psychofarmaca in woonzorgcentra.

BACKGROUND: Although guidelines put forward non-pharmacological therapies and advise against the chronic use of psychotropic drugs, these are still being prescribed regularly in Belgian nursing homes. GOAL: To explore the reasons for initiation, continuation and cessation of psychotropic drug treatment of elderly with dementia and behavioral problems, residing in the nursing home. METHOD: Twenty-seven interviews from an earlier project were used, in which a semi-structured interview was conducted with the nursing staff, the physicians and the caretakers of eleven randomly selected residents from three nursing homes. A qualitative analysis was performed by three independent researchers according to 'The Qualitative Analysis Guide of Leuven (QUAGOL)'. A first analysis focused on the process of initiation, continuation and cessation of medication. A second analysis compared the different participants of each interview and looked for similarities and differences. RESULTS: Seventeen codes were developed for four themes: (1) To initiate, to continue or to cease?; (2) Behavior; (3) Therapy; and (4) Alternatives. The reasons for initiating psychotropic drugs were reducing disruptive behavior and improving the quality of life of the resident. A comparison between the interviewed showed that psychotropic drugs were initiated at the request of the nursing staff. Neither doctors nor nurses considered the monitoring of the drug therapy their task, and tended to pass on this responsibility. Once psychotropic drugs were started, the treatment was chronic but remained part of a dynamic process in which a balance was sought between benefits and adverse effects. More insights into the behavior of the resident led to a better treatment of the behavioral problems. CONCLUSION: Nurses play an important role in the initiation and continuation of psychotropic drugs. Physicians should take a more active role in the process of indication and monitoring of psychopharmaceuticals. Discontinuation of psychotropic drugs and the use of non-pharmacological alternatives are important bottlenecks in nursing homes. Education and training, updated practice guidelines, appropriate research, professionalization and management elements can, in a complex interaction, change this situation for the better.

STOPP/START version 2-development of software applications: easier said than done?

Explicit criteria, such as the STOPP/START criteria, are increasingly used both in clinical practice and in research to identify potentially inappropriate prescribing in older people. In an article on the STOPP/START criteria version 2, O'Mahony et al have pointed out the advantages of developing computerised criteria. Both clinical decision support systems to support healthcare professionals and software applications to automatically detect inappropriate prescribing in research studies can be developed. In the process of developing such tools, difficulties may occur. In the context of a research study, we have developed an algorithm to automatically apply STOPP/START criteria version 2 to our research database. We comment in this paper on different kinds of difficulties encountered and make suggestions that could be taken into account when developing the next version of the criteria.

Spiritual history taking in palliative home care: A cluster randomized controlled trial.

BACKGROUND: Many health-care providers experience barriers to addressing spiritual needs, such as not having the right vocabulary. The ars moriendi model might be a feasible tool for spiritual history taking in palliative care. AIM: To investigate the effect of a structured spiritual history taking on the spiritual well-being of palliative patients in home care. DESIGN: Cluster randomized controlled trial, conducted between February and October 2013. PATIENTS AND METHODS: Registered nurses and general practitioners approached eligible patients with an incurable, life-threatening disease for study participation. Health-care providers allocated to the intervention arm of the study took a spiritual history on the basis of the ars moriendi model. Health-care providers in the control arm provided care as usual. Patient-reported outcomes on spiritual well-being, quality of life, pain, and patient-provider trust were assessed at two points in time. RESULTS: A total of 245 health-care providers participated in the study (204 nurses and 41 physicians). In all, 49 patient-provider dyads completed the entire study protocol. The median age of the patients was 75 years (range: 41-95 years), and 55% of the patients were female. There were no significant differences at any point in time in the scores on spiritual well-being, quality of life, pain, or patient-provider trust between the intervention and the control group. CONCLUSION: This cluster randomized controlled trial showed no demonstrable effect of spiritual history taking on patient scores for spiritual well-being, quality of life, health-care relationship trust, or pain. Further research is needed to develop instruments that accurately assess the effectiveness of spiritual interventions in palliative care populations.