The Hemodialysis Distress Thermometer for Caregivers (HD-DT-C): development and testing of the psychometric properties of a new tool for screening psychological distress among family caregivers of adults on hemodialysis.

PURPOSE: To develop and test the measurement properties of the HD-DT-C, a new tool designed to facilitate the screening of psychological distress and its sources in family caregivers of adults on hemodialysis. METHODS: The present investigation was carried out in three phases: Phase 1 focused on the process of developing and exploring the content validity and clinical utility of the HD-DT-C using a mixed-methods approach and feedback panels; Phase 2, where the psychometric properties of this new tool were tested in a cross-sectional study (n = 106 caregivers); and Phase 3, where the European Portuguese version of the HD-DT-C was translated and culturally adapted into American English using a forward-backward translation procedure, followed by an expert panel review. RESULTS: Findings suggested that the HD-DT-C was perceived by feedback panels as practical, appropriate, and useful for increasing dialysis provider/family caregiver communication in nephrology centers. The European Portuguese version of the HD-DT-C showed good test-retest reliability (ICC = 0.991 for the barometer and κ ≥ 0.80 in 77% of the checklist items), high diagnostic accuracy (AUC = 0.956), and strong convergent validity (all r ≥ 0.50) with reference measures that assess quality of life, caregiver burden, and symptoms of anxiety and depression. Cutoff scores with good clinical utility (CUI + ≥ 0.70) were recommended for screening distress in research (≥ 6) and clinical practice (≥ 5). CONCLUSION: The HD-DT-C is a brief, reliable, valid, and acceptable measure for identifying self-reported psychological distress and its sources among people caring for a family member or friend on hemodialysis. Future research is needed to explore the measurement properties of the American English version of this new tool.

Do physical fitness and cognitive function mediate the relationship between basic activities of daily living and quality of life in older adults with dementia?

PURPOSE: Independence in activities of daily living (ADLs) is associated with quality of life (QoL) in individuals with dementia. However, the contribution of physical and cognitive functions to this relationship needs further examination. This study aims to examine the mediating effect of physical fitness and cognitive function in the relationship between independence in basic ADLs and QoL among older adults with dementia. METHODS: This cross-sectional study included 107 older adults with dementia (74.8% women; age 78.21 ± 7.70 years). Independence in basic ADL and QoL were evaluated using the Barthel Index (BI) and QoL- Alzheimer's Disease Scale, respectively. The Alzheimer's Disease Assessment Scale-Cognitive Subscale and the Mini-Mental State Examination were applied to assess cognitive function. Physical fitness was evaluated using the 30-s chair stand, 2-min step and the Timed-Up and Go tests. A structural equation modelling (SEM) with bootstrapping estimation was conducted to determine the relationship between all variables. RESULTS: Independence in basic ADL positively affected QoL and this association was mediated by physical fitness (ß = 0.242, p = 0.011). No statistically significant results were observed when testing cognitive function as a mediator between BI and QoL (ß = 0.009, p = 0.345). CONCLUSIONS: Physical fitness (i.e., lower body strength, aerobic capacity, and mobility) plays a role in the relationship between basic ADL independence and QoL of older adults with dementia, reinforcing the need to improve and monitor these parameters throughout the disease progression. Future longitudinal studies should explore the temporal relationship between physical and cognitive function and its contribution to basic ADL independence and QoL.

Influence of chronic medical conditions on older patients' willingness to deprescribe medications: a cross-sectional study.

BACKGROUND: Aging correlates with a heightened prevalence of chronic diseases, resulting in multimorbidity affecting 60% of those aged 65 or older. Multimorbidity often leads to polypharmacy, elevating the risk of potentially inappropriate medication (PIM) use and adverse health outcomes. To address these issues, deprescribing has emerged as a patient-centered approach that considers patients' beliefs and attitudes toward medication and reduces inappropriate polypharmacy in older adults. Our study aims to investigate whether certain chronic medical conditions are associated with older patients' willingness to deprescribe medications. METHODS: A cross-sectional study enrolled 192 community-dwelling individuals aged 65 or older taking at least one regular medication. Data included demographics, clinical characteristics, and responses to the Portuguese revised Patients' Attitudes Towards Deprescribing (rPATD) questionnaire. Descriptive statistics characterized participants, while multiple binary logistic regression identified associations between chronic medical conditions and willingness to deprescribe. RESULTS: Among the participants (median age: 72 years, 65.6% female), 91.6% had multimorbidity. The analysis revealed that willingness to deprescribe significantly increased with the presence of gastric disease (adjusted odds ratio [aOR] = 4.123; 95% CI 1.221, 13.915) and age (aOR = 1.121; 95% CI 1.009, 1.246). Conversely, prostatic pathology (aOR = 0.266; 95% CI 0.077, 0.916), higher scores in the rPATD appropriateness factor (aOR = 0.384; 95% CI 0.190, 0.773), and rPATD concerns about stopping factor (aOR = 0.450; 95% CI 0.229, 0.883) diminished patients' willingness to deprescribe. CONCLUSIONS: This study highlights the intricate relationship between older patients' attitudes toward deprescribing and chronic medical conditions. We found that gastric disease was associated with an increased willingness to deprescribe medications, while prostate disease was associated with the opposite effect. Future research should explore how patients with specific diseases or groups of diseases perceive deprescribing of medications general and for specific medications, aiding in the development of targeted interventions.

Predicting informal dementia caregivers' desire to institutionalize through mining data from an eHealth platform.

BACKGROUND: Dementia is a leading factor in the institutionalization of older adults. Informal caregivers' desire to institutionalize (DI) their care recipient with dementia (PwD) is a primary predictor of institutionalization. This study aims to develop a prediction model for caregivers' DI by mining data from an eHealth platform in a high-prevalence dementia country. METHODS: Cross-sectional data were collected from caregivers registering on isupport-portugal.pt. One hundred and four caregivers completed the Desire to Institutionalize Scale (DIS) and were grouped into DI (DIS score ≥ 1) and no DI (DIS score = 0). Participants completed a comprehensive set of sociodemographic, clinical, and psychosocial measures, pertaining to the caregiver and the PwD, which were accounted as model predictors. The selected model was a classification tree, enabling the visualization of rules for predictions. RESULTS: Caregivers, mostly female (82.5%), offspring of the PwD (70.2), employed (65.4%), and highly educated (M 15 years of schooling), provided intensive care (Mdn 24 h. week) over a median course of 2.8 years. Two-thirds (66.3%) endorsed at least one item on the DIS (DI group). The model, with caregivers' perceived stress as the root of the classification tree (split at 28.5 points on the Zarit Burden Interview) and including the ages of caregivers and PwD (split at 46 and 88 years, respectively), as well as cohabitation, employed five rules to predict DI. Caregivers scoring 28.5 and above on burden and caring for PwD under 88 are more prone to DI than those caring for older PwD (rules 1-2), suggesting the influence of expectations on caregiving duration. The model demonstrated high accuracy (0.83, 95%CI 0.75, 0.89), sensitivity (0.88, 95%CI 0.81, 0.95), and good specificity (0.71, 95%CI 0.56, 0.86). CONCLUSIONS: This study distilled a comprehensive range of modifiable and non-modifiable variables into a simplified, interpretable, and accurate model, particularly useful at identifying caregivers with actual DI. Considering the nature of variables within the prediction rules, this model holds promise for application to other existing datasets and as a proxy for actual institutionalization. Predicting the institutional placement of PwD is crucial for intervening on modifiable factors as caregiver burden, and for care planning and financing.

Polypharmacy and drug interactions in older patients with cancer receiving chemotherapy: associated factors.

BACKGROUND: Polypharmacy in older adults with cancer receiving chemotherapy leads to increased risks of drug interactions, translating in potential hazardous health outcomes. This study aims to assess the prevalence of polypharmacy, drug-drug interactions (DDIs), and severe-drug interactions (SDIs) in older patients with cancer. Antineoplastic agents (ANAs) involvement and possible risk contexts (comorbidities with cardiac risk, and high-risk medications) were also analysed. METHODS: Observational study with older adults (≥ 65 years) diagnosed with cancer, who were treated with antineoplastic agents (ANAs); it was conducted in three hospitals from the north of Portugal. Data collection was obtained using self-reports and medical records. DDIs were identified and classified using Micromedex® software. Descriptive and association analyze statistics were performed. Statistical hypothesis tests with p value less than 0.05 were considered significant. All statistical procedures and analysis were performed with R version 4.1.3. RESULTS: We enrolled 552 patients. Polypharmacy prevalence was 88.40%; 76.45% and 56.16% of the patients presented with DDIs and SDIs, respectively. SDIs with ANAs were found in 21.20% of the patients. High-risk medications were associated with a higher risk of polypharmacy, DDIs, and SDIs. Polypharmacy and DDIs were higher in patients with hypertension or diabetes. SDIs were higher in patients with diabetes. CONCLUSION: Polypharmacy, potential DDIs and SDIs were highly prevalent in older adults with cancer. A careful review of the medication administered is necessary to decrease it. These findings warrant further research to optimize medication in this population and decrease problems related to medication, which may lead to emergency room visits and hospitalisations, compromising patient safety and/or ongoing treatments.

Solitude in old age: a scoping review of conceptualisations, associated factors and impacts.

OBJECTIVE: This study aimed to map the existing scientific research about solitude in older adults, focusing on its conceptualizations, associated factors, and impacts. METHOD: A scoping review was conducted, searching Scopus, Web of Science, PubMed, and Academic Search Complete databases for publications from 1985 until December 2023. RESULTS: Twenty-four studies were included. The main findings suggest a wide-ranging conceptualisation of solitude, with most studies (n = 16) adopting neutral definitions such as "being alone, without communicating with others"; and a subset of studies adopting definitions that alluded to "positive solitude" (as the choice of being with oneself, underscoring potential benefits). Individual characteristics were identified as key associated factors of solitude. Both positive impacts and negative impacts were reported. CONCLUSION: The variability in conceptualisation and impacts likely stems from methodological and theoretical differences in approaching solitude. This underscores the need for additional research to establish a widely accepted conceptual framework. Such consensus could enhance the understanding of the conditions contributing to positive and negative impacts associated with solitude and inform targeted interventions.

Does Multicomponent Physical Exercise Training Work for Dementia? Exploring the Effects on Cognition, Neuropsychiatric Symptoms, and Quality of Life.

OBJECTIVE: To explore the effects of a multicomponent training (MT) physical exercise intervention in the cognitive function, neuropsychiatric symptoms, and quality of life of older adults with major neurocognitive disorder (NCD). METHODS: Quasi-experimental controlled trial. Thirty-six individuals (25 female) were equally distributed to an exercise group (aged 74.33 ± 5.87 years) or a control group (aged 81.83 ± 6.18 years). The Alzheimer's Disease Assessment Scale - Cognitive (ADAS-Cog), the Neuropsychiatric Inventory (NPI) and the Quality of Life - Alzheimer's Disease (QoL-AD) tests were performed before and after the intervention. RESULTS: There was no clear interaction effect factor of intervention on ADAS-Cog (B = 1.33, 95% CI: -2.61 - 5.28, P = .513), NPI (B = -8.35, 95% CI: -18.48 - 1.72, P = .115), and QoL-AD (B = 2.87, 95% CI: .01 - 5.73, P = .058). CONCLUSIONS: The 6-month MT physical exercise intervention did not present evidence of slowing down cognitive decline neither improving neuropsychiatric symptomatology, and quality of life of older adults with major NCD. Future studies with larger samples are needed to better understand the impact of physical exercise interventions using MT methodology on specific cognitive abilities, neuropsychiatric symptoms, and quality of life domains.

Mapping Patients' Perceived Facilitators and Barriers to In-Center Hemodialysis Attendance to the Health Belief Model: Insights from a Qualitative Study.

BACKGROUND: Previous research has shown that deliberate withdrawal, skipping, and/or shortening hemodialysis sessions has become a major health problem associated with poor clinical outcomes and early mortality in patients with end-stage renal disease (ESRD). However, patients' experiences with this treatment remain largely unexplored. This study aimed to explore patients' perceived facilitators and barriers to in-center hemodialysis attendance and map these findings to the Health Belief Model. METHODS: A qualitative exploratory study was conducted with a purposive sample. Semi-structured interviews were conducted and submitted to thematic analysis. RESULTS: Twenty-four patients (66.2 ± 12.3 years old; length of time on hemodialysis: 35.2 ± 51.5 months) were interviewed. Five major facilitators (social support, perceived benefits, self-efficacy, time on dialysis, and risk/susceptibility perception) and two barriers (lack of knowledge about ESRD and hemodialysis, and psychosocial costs) were identified. CONCLUSION: Adherence to the prescribed regimen of hemodialysis attendance is a complex and multidimensional phenomenon that involves an interaction between modifying factors (social support, disease and treatment knowledge, time on dialysis) and patients' perceived benefits, perceived risks, self-efficacy, and treatment costs. This study findings expand knowledge by suggesting that perceiving health benefits from the beginning of treatment, self-efficacy to deal with dialysis demands, and purpose in life are important facilitators of adherence to in-center hemodialysis sessions. Furthermore, it suggests that the impact of the hemodialysis regimen on the emotional well-being of family members is an important barrier. Future interventions should focus on skills training to promote self-efficacy and family coping with the demands of in-center hemodialysis, improve disease and treatment knowledge, and help balance perceived benefits with dialysis costs.

Consensus on the Terms and Procedures for Planning and Reporting a Usability Evaluation of Health-Related Digital Solutions: Delphi Study and a Resulting Checklist.

BACKGROUND: Usability evaluation both by experts and target users is an integral part of the process of developing and assessing digital solutions. Usability evaluation improves the probability of having digital solutions that are easier, safer, more efficient, and more pleasant to use. However, despite the widespread recognition of the importance of usability evaluation, there is a lack of research and consensus on related concepts and reporting standards. OBJECTIVE: The aim of the study is to generate consensus on terms and procedures that should be considered when planning and reporting a study on a usability evaluation of health-related digital solutions both by users and experts and provide a checklist that can easily be used by researchers when conducting their usability studies. METHODS: A Delphi study with 2 rounds was conducted with a panel of international participants experienced in usability evaluation. In the first round, they were asked to comment on definitions, rate the importance of preidentified methodological procedures using a 9-item Likert scale, and suggest additional procedures. In the second round, experienced participants were asked to reappraise the relevance of each procedure informed by round 1 results. Consensus on the relevance of each item was defined a priori when at least 70% or more experienced participants scored an item 7 to 9 and less than 15% of participants scored the same item 1 to 3. RESULTS: A total of 30 participants (n=20 females) from 11 different countries entered the Delphi study with a mean age of 37.2 (SD 7.7) years. Agreement was achieved on the definitions for all usability evaluation-related terms proposed (usability assessment moderator, participant, usability evaluation method, usability evaluation technique, tasks, usability evaluation environment, usability evaluator, and domain evaluator). A total of 38 procedures related to usability evaluation planning and reporting were identified across rounds (28 were related to usability evaluation involving users and 10 related to usability evaluation involving experts). Consensus on the relevance was achieved for 23 (82%) of the procedures related to usability evaluation involving users and for 7 (70%) of the usability evaluation procedures involving experts. A checklist was proposed that can guide authors when designing and reporting usability studies. CONCLUSIONS: This study proposes a set of terms and respective definitions as well as a checklist to guide the planning and reporting of usability evaluation studies, constituting an important step toward a more standardized approach in the field of usability evaluation that may contribute to enhancing the quality of planning and reporting usability studies. Future studies can contribute to further validating this study work by refining the definitions, assessing the practical applicability of the checklist, or assessing whether using this checklist results in higher-quality digital solutions.

Recommendations of good practice to prevent aspiration pneumonia in older adults at risk of oropharyngeal dysphagia living in nursing homes: A modified e-Delphi study protocol.

BACKGROUND: Aspiration pneumonia (AP) is a subset of pneumonia caused by the aspiration of food and fluids to the lungs and is highly prevalent in the older population. Oropharyngeal dysphagia (OD) is one of the risk factors for AP and it is also associated with malnutrition, dehydration and poor functional outcomes. As pneumonia is the second most common infection in nursing homes (NHs) and OD represents a major concern to NH staff, good practices for the prevention of AP in older adults at risk of OD are needed. PURPOSE: The aim of this modified e-Delphi study is to build consensus among a panel of experts regarding a set of recommendations for NH staff on good practices to prevent AP in older adults at risk of OD living in NHs. The objective of this paper is to establish the methodology inherent to the Delphi study. METHODS: An online modified Delphi study will be developed in three rounds. Criteria for the Delphi panel participants include holding a master's or doctoral degree in OD or speech and language therapy; or having 10 or more years of experience in OD; or having at least one scientific publication related to OD. A previously described modified Delphi methodology will be used to achieve consensus (75% agreement). An additional round will be performed to collect the experts' perspectives regarding the priority for application of each recommendation previously validated. DISCUSSION: This protocol aimed to describe the methodology of a future Delphi study on the prevention of AP, seeking to fulfil the gap in the literature regarding this topic. The modified Delphi technique is a widely used method for collecting experts' opinion in health sciences, but the absence of standardised guidelines allows some heterogeneity between studies with the same aim. WHAT THIS PAPER ADDS: What is already known on the subject Aspiration pneumonia (AP) is related to three main risk factors: impaired safety of swallow, impaired nutritional status and poor oral health. It is known that being dependent for feeding is one of the main risk factors for AP and around 50% of nursing home (NH) residents need feeding assistance. Thus, it is important to promote specialised intervention and care by the NH staff for preventing AP. What this paper adds to existing knowledge It is hypothesised that increasing the knowledge of NH staff regarding the best practices for preventing AP in older adults at risk of oropharyngeal dysphagia (OD) will improve outcomes such as quality of life, incidence of AP and mortality. What are the potential or actual clinical implications of this work? The recommendations resulting from this study will address a current gap in healthcare practice of NH staff regarding older adults at increased risk for OD and, consequently, for AP.

Cognition, function, and prevalent dementia in centenarians and near-centenarians: An individual participant data (IPD) meta-analysis of 18 studies.

INTRODUCTION: There are limited data on prevalence of dementia in centenarians and near-centenarians (C/NC), its determinants, and whether the risk of dementia continues to rise beyond 100. METHODS: Participant-level data were obtained from 18 community-based studies (N = 4427) in 11 countries that included individuals ≥95 years. A harmonization protocol was applied to cognitive and functional impairments, and a meta-analysis was performed. RESULTS: The mean age was 98.3 years (SD = 2.67); 79% were women. After adjusting for age, sex, and education, dementia prevalence was 53.2% in women and 45.5% in men, with risk continuing to increase with age. Education (OR 0.95;0.92-0.98) was protective, as was hypertension (odds ratio [OR] 0.51;0.35-0.74) in five studies. Dementia was not associated with diabetes, vision and hearing impairments, smoking, and body mass index (BMI). DISCUSSION: Among the exceptional old, dementia prevalence remains higher in the older participants. Education was protective against dementia, but other factors for dementia-free survival in C/NC remain to be understood.

Illness perception and treatment adherence in haemodialysis: a systematic review.

Patients with kidney failure need lifelong renal replacement therapy to survive and, worldwide, in-centre haemodialysis is the most common modality. The efficacy of this treatment largely depends on the patients' adherence to several health behaviours. According to Leventhal's self-regulation model, patients' illness perceptions can be a key factor for treatment adherence. Therefore, it is of utmost importance to better understand this relationship to further fine-tune the effectiveness of renal rehabilitation programs. This study aimed to systematically review the literature on the association between illness perceptions and treatment adherence in adults undergoing in-centre haemodialysis. The search was performed on PubMed, Scopus, CINAHL, Web of Science (all databases included), and ProQuest (all databases included), from the 17th to the 21st of December 2020. The last update was performed on the 9th of June of 2022. Articles were critically appraised using the Joanna Briggs Institute (JBI) Critical Appraisal Checklists for Analytical Cross-Sectional Studies. Nine studies were included comprising a total of 1161 patients undergoing in-centre haemodialysis. Associations between illness perceptions and treatment adherence were found in six studies. Adherence to dietary restrictions was the type of adherence with more significant associations with illness perceptions, followed by fluid control and medication intake. Two studies combining several types of adherences into an overall score also showed significant associations with illness perceptions. No significant associations were found between illness perceptions and adherence to dialysis sessions. These findings suggest that illness perceptions in patients undergoing in-centre haemodialysis should continue to receive research attention. Future interventions should acknowledge the importance of modifying maladaptive illness perceptions to improve treatment adherence in kidney failure. The protocol for this systematic review was registered on PROSPERO (CRD42021231929).

Aged 70 and still a child: complexities, strains and gains of older children caring for their (near) centenarian mothers.

BACKGROUND: Longer lives increase the possibility of caring duties, which means that older adults looking after their ageing parents-as well as their own partners-is becoming an increasingly common scenario in developed countries. OBJECTIVE: To explore the caregiving demands of very old caregiving dyads and the experience of maintaining the identity of a child at such an advanced age. DESIGN: Qualitative study. SUBJECTS: 15 participants (four males), all aged 70 or over and caring for their mothers, aged between 95 and 105 years old. METHODS: Semi-structured interviews analysed thematically. RESULTS: Caregivers are willing to care for their mothers 'until death tears them apart', despite the double strains they face, that is more self-limitations and added care receiver need. On a positive side, they feel 'happy, thankful and proud' for still having their mothers alive. They also describe that maintaining the identity of a child at such an advanced age was somewhat unthought of and unexpected but an important source of pride. CONCLUSIONS: These findings suggest that these oldest-old caregiving dyads are characterised by a relationship shaped by strong feelings of extended filial love, constituting a family feature that needs further understanding. Findings also underscore the challenges these carers face in dealing with several agents (secondary caregivers) and entities in the care provision.

Caring for parents with end-stage renal disease: What do adult children face and how do they cope?

AIM: This study aimed to explore the stressors and coping strategies of adult children who care for their parents with end-stage renal disease (ESRD) undergoing in-centre haemodialysis. BACKGROUND: Given the growing number of older patients with ESRD, adult children are increasingly providing more care and assistance to their parents with this condition. However, little is still known about the experiences of caring for a parent undergoing haemodialysis. DESIGN: A qualitative exploratory study was conducted in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. METHODS: Semi-structured face-to-face interviews with nineteen adult children (44.9 ± 11.7 years old) were carried out. Data were transcribed verbatim and subjected to thematic analysis. RESULTS: Four stressors (managing disease and treatment-related requirements, patients' reaction to treatment, lack of support from family members, and additional challenges to personal and family life) and five coping strategies (active coping and planning, seeking social support for emotional use, accepting the situation as it is, venting emotions, and maintaining interests outside caring) were identified. CONCLUSION: Caring for a parent undergoing haemodialysis is an experience with several challenges, marked by educational needs, emotional distress, lack of support from close relatives and the need to manage multiple responsibilities. RELEVANCE TO CLINICAL PRACTICE: Findings highlight the importance of developing interdisciplinary educational and supportive interventions to support this group of caregivers. These interventions should facilitate access to disease and treatment-related information, provide emotional support, and train coping skills to prevent burden and promote healthy adjustment to the demands of ESRD care.

A family-centred perspective on the arteriovenous fistula in end-stage renal disease: Findings from dyadic interviews.

INTRODUCTION: The preservation of a well-functioning arteriovenous fistula (AVF) is crucial for successful dialysis in patients with end-stage renal disease (ESRD); nonetheless, complications are frequent which leads to lower quality of life, hospitalisations and death. Self-care behaviours help to reduce the risk of complications and family caregivers can play an important role as partners for behaviour change. However, the patient and family caregiver's experiences with such an invasive intervention are largely unknown. AIMS: This study aimed to explore the experiences of patients with ESRD and their family caregivers with the AVF through joint interviews. METHODS: A qualitative exploratory study was conducted with a purposive sample. Semi-structured joint interviews were conducted with 14 dyads (28 participants) composed of patients on haemodialysis with AVF and their respective family caregivers. Interviews were audiotaped, transcribed verbatim and submitted to thematic analysis. FINDINGS: Four major themes were identified: (i) AVF negative impacts; (ii) (un)presence of self-care behaviours; (iii) AVF self-management facilitators and (iv) AVF self-management barriers. DISCUSSION: The findings suggested that more attention needs to be paid to patients' and their family caregivers' support needs (e.g. fears, concerns, knowledge, adherence barriers and facilitators) regarding AVF self-management. The dyads seem to be aware of how to take care of the AVF; however, self-care behaviours still need to be improved. CONCLUSION: Innovative interventions need to follow an interdisciplinary approach with an educational and support component. The integration of family caregivers should also be considered, since this study evidenced their lack of knowledge and skills, and willingness to participate in these initiatives.

Caring for patients with end-stage renal disease during COVID-19 lockdown: What (additional) challenges to family caregivers?

INTRODUCTION: Caring for a patient with end-stage renal disease undergoing in-centre haemodialysis can be a stressful experience, likely to involve significant burden. Within the context of the new coronavirus pandemic, these patients are highly vulnerable to infection by COVID-19, which might increase the care demands and burden of family caregivers. AIM: This study aimed to explore the subjective experiences of family caregivers of non-COVID-19 patients with end-stage renal disease undergoing in-centre haemodialysis during the COVID-19 lockdown. STUDY DESIGN: A qualitative study was performed with a purposive sample. METHODS: Semi-structured telephone interviews were conducted with 19 family caregivers (50.7 ± 14 years old) of patients undergoing in-centre haemodialysis in April 2020. FINDINGS: Four major themes were identified: (1) emotional distress; (2) changes in caregiving responsibilities; (3) educational and supportive needs; and (4) coping strategies to deal with the outbreak and with the lockdown. DISCUSSION: The findings suggest that family caregivers of patients undergoing in-centre haemodialysis have to manage several additional care responsibilities due to COVID-19 lockdown. The dialysis team should consider the development of educational and supportive interventions to meet family caregivers' needs, mitigate emotional distress, fears and concerns, and prevent caregiver burden during the COVID-19 pandemic.

Screening for Caregiver Burden in the Community: Validation of the European Portuguese Screening Version of the Zarit Burden Interview (ZBI-4).

Objectives: Brief screening instruments are useful in busy clinical practice to identify those requiring further assessment. This study aims to translate and validate a Portuguese version of the four-item Zarit Burden Interview (ZBI-4) to identify caregiver burden in a community-based sample in Northern Portugal.Methods: We collected data from 203 informal caregivers of community-dwellers aged ≥80 years. Internal consistency and factors were measured using Cronbach's alpha. Pearson's correlation was used to examine construct validity against negative and positive aspects of caregiving from the Caregiving Appraisal Scale. Discriminative ability was evaluated from the area under the receiver operating characteristic curve (AUC). Optimal cutoffs were calculated using Youden´s Index.Results: The internal consistency of the Portuguese version of the ZBI-4 was good (alpha = 0.71). Concurrent validity was acceptable, showing strong correlation with the negative (rho = 0.66) and medium correlation with positive (rho = -0.33) aspects of the Caregiving Appraisal Scale. Discriminative accuracy for caregiver burden was also good (AUC = 0.86). Youden's index produced an optimal cutoff of ≥7 points for burden.Conclusions: The Portuguese version of the ZBI-4 screen demonstrates good psychometric properties.Clinical implications: These results show the utility of the Portuguese version of ZBI-4 as a short screen for caregiver burden for use in the community to facilitate rapid screening for this important and complex stressor.

Understanding Loneliness in Older Adults: Reports from Experts by Experience to Reach Digital Solutions.

Loneliness is a subjective experience escalating worldwide and affecting older adults. Digital solutions can play a major role in addressing loneliness, although its use has been facing resistance due to scarce involvement of older adults in its design. MOAI LABS is an ongoing European project that adopts a co-design process to develop digital solutions to address loneliness in older adults. This study reports the experience of loneliness shared by a group of eight community-dwelling older Portuguese adults (aged 64 to 86 years old), who are "experts by experience" (who feel alone). Findings were obtained from two co-creation sessions that were audio-recorded, and transcribed. The data analysis was performed involving the research team and the "experts by experience." Three themes emerged: 1) loneliness as a detrimental "state of the soul"; 2) loneliness reinforced by features of the aging process; and 3) loneliness builds more loneliness. MOAI LABS co-design process of digital solutions will embrace these experiences and involve frontline gerontological social workers who have experience with older adults' loneliness.

Being on hemodialysis during the COVID-19 outbreak: A mixed-methods' study exploring the impacts on dialysis adequacy, analytical data, and patients' experiences.

For individuals with end-stage renal disease (ESRD), the novel coronavirus can present several additional challenges in disease self-management. This study aimed to explore the impacts of the COVID-19 pandemic in non-COVID-19 patients with ESRD undergoing in-center hemodialysis (HD). A mixed-methods study was conducted with a purposive sample recruited from one dialysis unit in Portugal. Quantitative data were collected retrospectively from patients' medical records from February 2020 (T1-before the outbreak) and from April 2020 (T2-during lockdown). Semi-structured interviews were conducted with 20 patients (66.9 ± 11.9 years old) undergoing HD for an average of 46.1 months (±39.5) in April 2020. Overall results suggested that dialysis adequacy and serum albumin levels decreased significantly at T2, while phosphorus levels increased. The findings from thematic analysis suggested several psychosocial negative impacts and impacts on disease and treatment-related health behaviors (eg, difficulties managing dietary restrictions during the lockdown and diminished physical activity), which can partially explain these quantitative results. However, some patients were also able to find positive impacts in this experience and problem-focused and emotional strategies were identified to cope with the demands of COVID-19. Several recommendations have been made to mitigate patients' emotional, relational, and educational unmet needs during the current pandemic and in the event of new outbreaks.

Health-related physical indicators and self-rated quality of life in older adults with neurocognitive disorder.

PURPOSE: This study aimed to identify the association between health-related physical indicators-sarcopenia-related factors, physical fitness, independence in activities of daily living (ADL) and habitual physical activity-and self-rated quality of life (QoL) in people with neurocognitive disorder (NCD). METHODS: This cross-sectional study included 115 participants (78.22 ± 7.48 years; 74.8% female) clinically diagnosed with NCD. Self-rated QoL was evaluated using The Quality of Life-Alzheimer's Disease (QoL-AD). Dual energy X-ray Absorptiometry, handgrip strength, Short Physical Performance Battery, and the 6-m Walk test were used to assess sarcopenia-related factors. Senior Fitness Test and One Leg Balance test, Barthel Index, Baecke Modified Habitual Physical Activity Questionnaire were used to determine physical fitness, independence in ADL and physical activity, respectively. Regressions analyses were performed to examine associations between these variables and QoL-AD. RESULTS: Data from univariable linear regression analysis revealed that self-rated QoL was associated with sarcopenia-related factors (lower body function, handgrip strength, gait speed, and appendicular skeletal muscle mass index-ASMI), physical fitness (upper-and-lower-body strength, agility/dynamic balance, cardiorespiratory fitness and body mass index), habitual physical activity and independence in ADL. Results from multivariable regression analysis showed that ASMI (B = 1.846, 95% CI 0.165-3.527, p = 0.032) and lower body function (B = 0.756, 95% CI 0.269-1.242, p = 0.003) were positively associated with self-rated QoL. These variables explained 20.1% of the variability seen in self-rated QoL, controlling for age, sex, marital status and education. CONCLUSION: Sarcopenia-related factors, namely lower body function and ASMI, should be acknowledged in future research studies as critical health-related indicators associated with QoL in people with NCD. TRIAL REGISTRATION: ClinicalTrials.gov-identifier number NCT04095962.