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Introduction: Informal caregivers are the backbone of dementia care. iSupport is a World Health Organization digital support program for caregivers of people with dementia (PwD) that has been culturally adapted in several countries. iSupport was previously assessed for its feasibility in Portugal, and this country-specific version is now being utilized as a remote measurement tool (RMT). It constitutes the first internationally developed iSupport platform that is technically and scientifically enhanced to collect data on sociodemographic, clinical, and psychosocial variables of dementia care dyads. This paper characterizes the early adopters of iSupport-Portugal and discusses its exploration as a RMT. Methods: Cross-sectional data were collected between February and July 2023 from users registering on isupport-portugal.pt. To characterize caregivers and PwD, eligibility was limited to unpaid caregivers assisting community dwelling PwD (n = 173). Data were collected through self-administered instruments in users' accounts. Caregivers completed psychosocial measures on burden, anxiety, depression, quality of life, desire to institutionalize and usage of community services. Textual data on caregivers' needs underwent content analysis. Results: Among the early adopters of iSupport-Portugal (n = 365), 52.3% were informal caregivers, while 44.7% were health/social care professionals or others. Most caregivers were female (82.7%), middle-aged (M 51.7 years), highly educated (M 15.3 years) and supporting a parent (70.5%). Caregivers cared for a median of 24 h/week and 60.8% lived with the PwD. Neuropsychiatric symptoms were reported for 94.1% of PwD, who scored as moderately dependent (Barthel Index: M 14.0). Significant burden was reported by 88.4% of caregivers (≥21 on ZBI-22). Among caregivers scoring borderline or abnormal (≥8 on HADS) for anxiety, depression, or both (75.5%), 30.8% sought mental health counseling. Caregivers supporting a PwD not using community services scored higher on anxiety (p = 0.003), and depression (p = 0.009). Text data revealed unmet practical, emotional, and informational needs. Discussion: iSupport-Portugal has garnered fair initial interest from caregivers, particularly from those who are children, highly educated, and employed. Early adopters exhibited significant psychological distress, and both practical and emotional needs, which contrast with limited use of support services for themselves and the PwD. iSupport-Portugal shows promise for descriptive research on care dyads, particularly among newer generations of caregivers.
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BACKGROUND: Given the unprecedented aging of the population and the increased focus on overall well-being in older age, investigating the determining factors of sexual well-being in older adults becomes essential as it offers insights into promoting healthy aging and overall quality of life. AIM: By applying the biopsychosocial model of sexuality in older age, we aimed to identify the role of biomedical and psychosocial factors in predicting sexual well-being in partnered older adults (≥55 years old). METHODS: A total of 111 participants (mean [SD], 63.2 [5.96]) completed a self-report questionnaire assessing biopsychosocial dimensions. Bivariate correlational analyses and hierarchical multiple regression were conducted to investigate factors associated with sexual well-being. Health-related factors were entered into the first regression model. The second model included factors pertaining to relationship dimensions. Sexual beliefs were introduced in the third regression model. OUTCOMES: Self-rated health, psychological distress, subjective cognitive decline, sexual beliefs, duration of the relationship, relationship satisfaction, and sexual well-being were assessed. RESULTS: Findings from the hierarchical regression revealed that duration of relationship [t(104) = -3.07, P < .01], relationship satisfaction [t(104) = 8.49, P < .001], and age-related sexual beliefs [t(104) = -2.75, P < .01] were significant predictors of sexual well-being of partnered older adults [F(6, 104) = 22.77, P < .001, R2 = .57], after controlling for health-related factors. These findings suggest that relationship factors and sexual beliefs play a significant role in predicting sexual well-being of older adults, above and beyond health-related dimensions. CLINICAL IMPLICATIONS: Interventional approaches aimed at promoting sexual well-being in older age might benefit from incorporating exercises that demystify age-related sexual beliefs, by normalizing changes that occur with aging and fostering positive attitudes toward sexual expression in older age; particularly for older adults in long-term relationships, relationship satisfaction must also be considered as an important intervention target. STRENGTHS AND LIMITATIONS: Further investigation using longitudinal designs is required to examine the causal links between these factors and sexual well-being in older age. CONCLUSION: Findings from this study underscore the role of relationship dimensions and age-related sexual beliefs for the sexual well-being of partnered older adults.
Subject(s)
Personal Satisfaction , Sexual Behavior , Sexual Health , Humans , Female , Male , Aged , Middle Aged , Sexual Behavior/psychology , Surveys and Questionnaires , Sexual Partners/psychology , Health Status , Self Report , Quality of Life/psychology , Interpersonal Relations , Aging/psychologyABSTRACT
OBJECTIVE: The 'Connected We St@nd' is an online self-management intervention programme for people receiving in-centre haemodialysis and family caregivers that combines an educational and psychosocial support component. This study aimed to evaluate its feasibility and acceptability before proceeding to a large-scale trial. DESIGN: This was a pre-post single-arm feasibility pilot study conducted with adults undergoing in-centre haemodialysis and family caregivers. METHODS: Feasibility was based on eligibility, consent, retention, completion and intervention adherence rates, while acceptability was assessed in post-intervention focus group interviews. RESULTS: Twenty-six people (16 adults on haemodialysis and 10 family caregivers) recruited through social networks completed the intervention. Consent, retention and completion rates were excellent (>90%) and eligibility (77.5%) and intervention adherence were satisfactory (69% for the psychosocial support sessions). Qualitative findings revealed that participants shared positive feelings regarding their participation in the programme. The valuable interactions with group peers and health psychologists during the support sessions, the perception of the adequacy and coherence of the programme's contents and materials and the participants' confidence in using the platform developed to deliver the intervention were some of the aspects highlighted as facilitators of intervention acceptability. Additionally, people on haemodialysis and caregivers reported that participation in the programme brought several educational and emotional benefits (e.g., additional disease-related knowledge, improved communication and coping skills, greater confidence in managing dialysis complications or caregiving demands) that helped increase their self-management skills and psychosocial adjustment to the demands of kidney failure and renal therapies. CONCLUSIONS: The results suggested that the 'Connected We St@nd' programme is likely to be feasible and acceptable for adults on haemodialysis and family caregivers, thus representing a promising resource for the future of interdisciplinary renal rehabilitation. Suggestions were made to fine-tune the intervention design to proceed with a large-scale trial.
Subject(s)
Caregivers , Feasibility Studies , Renal Dialysis , Self-Management , Humans , Caregivers/psychology , Male , Female , Pilot Projects , Middle Aged , Self-Management/methods , Self-Management/psychology , Renal Dialysis/psychology , Renal Dialysis/methods , Adult , Aged , Social Support , Internet-Based InterventionABSTRACT
BACKGROUND: The relevance of person-centred care as an optimising approach to the quality of care provided to older adults has sparked the development of important instruments that measure this approach at residential care facilities and requires validation for the Portuguese population. OBJECTIVES: This study aims to adapt and validate the Person-centered Care Assessment Tool (P-CAT) to the Portuguese population. METHODS: The P-CAT assesses the level of person-centred care provided by residential care facilities, according to staff. The process of adapting the P-CAT to the Portuguese population includes its translation, backtranslation and a pilot study. To recruit participants for the validation study, we contacted the Portuguese residential care facilities with emails provided in the official registries, and the study was also divulged on social media. RESULTS: The study had the participation of 573 staff members. The mean score of P-CAT was 50.76 (SD = 7.65). The exploratory factor analysis showed three dimensions: the extent of care personalisation, the amount of organisational support and the degree of environmental accessibility. The results show good internal consistency for the total scale (α = 0.809) and good temporal stability in the test-retest assessed by intraclass correlation coefficient (0.893). CONCLUSIONS: This version of the P-CAT for the Portuguese population has shown adequate psychometric properties and contributes to the study of care provided at residential care facilities in Portugal through self-reporting from staff. IMPLICATIONS FOR PRACTICE: The availability of this instrument is useful for professional practice and research purposes and supports technical and scientific advancements that are necessary for the evolution of care frameworks.
Subject(s)
Patient-Centered Care , Translations , Humans , Surveys and Questionnaires , Portugal , Pilot Projects , Psychometrics , Reproducibility of ResultsABSTRACT
Introduction: Older persons with dementia (PwD) are more likely to be institutionalized than their counterparts without dementia. The caregiver's desire to institutionalize has been suggested as the most important predictor of actual institutionalization. This cross-sectional study aimed to culturally adapt the Desire to Institutionalize Scale (DIS) to a country with a high prevalence of dementia (Portugal) and examine its psychometric properties. Methods: The reliability, structural validity, and criterion validity of the DIS-PT were assessed by applying the scale using a remote measurement web platform. A sample of 105 dementia caregivers completed the DIS-PT and several psychosocial measures, including caregiver burden, anxiety, depression, quality of life, PwD functional independence, and neuropsychiatric symptoms. Results: The DIS-PT demonstrated good structural validity, with one factor explaining 75% of the total variance. The internal consistency of the scale was high (α = 0.802). Most caregivers (65.7%) endorsed at least one item on the DIS-PT (Mdn 2). The caregiver's desire to institutionalize was significantly associated with the caregiver, care recipient, and contextual variables previously known to affect institutional placement. These included the caregivers' occupational status, perceived burden, anxiety (but not depression), physical and psychological quality of life, care recipient education, severity of neuropsychiatric symptoms, and cohabitation with the caregiver. Discussion: This study offers preliminary support for the psychometric quality of the DIS-PT. The scale has practical applications in the early identification of caregivers considering nursing home placement, providing room for intervention in modifiable risk factors that may otherwise lead to the institutionalization of PwD. Remote measurement tools may hold value in assessing caregiving dyads non-intrusively and inexpensively.
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This scoping review aims to identify and map the existing literature regarding the relationship between neuroticism and self-reported health in community-dwelling older adults. We adopted the Joanna Briggs Institute Manual for Evidence Synthesis recommendations and followed the PRISMA-SCr when reporting it. The search was performed on ten different databases, including: Cumulative Index to Nursing and Allied Health Literature, Cochrane, Embase, PsycArticles, PsycInfo, United States National Library of Medicine, Scopus, Web of Science, Ageline and Biblioteca Virtual em Saúde/Centro Latino-Americano e do Caribe de Informação em Ciências da Saúde databases until February 2021. Data screening and extraction were performed by two independent reviewers. We included primary studies with older adults (≥60 years) [participants] that adopted validated instruments to assess neuroticism and self-reported health [concept] in the community [context], published in Portuguese, English, or Spanish. We identified 3453 articles and included 15 studies in this review. We extracted the main categories of included studies, characteristics of the participants, methodological issues, and biopsychosocial factors. Outcomes were reported in three sections: Focus of studies; Definitions and measures of neuroticism and self-reported health; Associations with biopsychosocial factors. We found an association between high neuroticism and poor self-reported health. Some biopsychosocial factors may influence this relationship, such as chronic diseases, depression, social support, and a sense of control, which must be considered in future studies to shed light on this topic
Esta revisão de escopo tem como objetivo identificar e mapear a literatura existente sobre a relação entre neuroticismo e saúde autorreferida em idosos vivendo na comunidade. Adotamos as recomendações do Joanna Briggs Institute Manual for Evidence Synthesis e seguimos o PRISMA-SCr ao reportá-lo. A busca foi realizada em dez bases de dados diferentes, incluindo: Cumulative Index to Nursing and Allied Health Literature, Cochrane, Embase, PsycArticles, PsycInfo, United States National Library of Medicine, Scopus, Web of Science, Ageline e Biblioteca Virtual em Saúde/Centro Latino -Americano e do Caribe de Informação em Ciências da Saúde até fevereiro de 2021. A triagem e extração dos dados foram realizadas por dois revisores independentes. Incluímos estudos primários com idosos (≥60 anos) [participantes] que adotaram instrumentos validados para avaliar neuroticismo e saúde autorreferida [conceito] na comunidade [contexto], publicados em português, inglês ou espanhol. Identificamos 3.453 artigos e incluímos 15 estudos nesta revisão. Extraímos as principais categorias dos estudos incluídos, características dos participantes, questões metodológicas e fatores biopsicossociais. Os resultados foram relatados em três seções: Foco dos estudos; Definições e medidas de neuroticismo e autoavaliação de saúde; Associações com fatores biopsicossociais. Encontramos uma associação entre alto neuroticismo e má saúde autorrelatada. Alguns fatores biopsicossociais podem influenciar nessa relação, como doenças crônicas, depressão, suporte social e senso de controle, que devem ser considerados em estudos futuros para elucidar esse tema
Subject(s)
Humans , Aged , Health Status , Diagnostic Self Evaluation , Neuroticism/physiologyABSTRACT
Introduction: Experiencing bereavement may be challenging. Despite the oldest-old population increase, a subgroup at greater risk of death, few studies focus on the grieving process of informal caregivers (ICs). This study analyzed the transition to bereavement of ICs of oldest-old individuals (≥80 years) over 1-year and compares the evolution of the health-related quality of life (HrQoL) between those experiencing bereavement and those who continued care through the study period. Materials and methods: A prospective longitudinal observational study was conducted enrolling 204 ICs of the Metropolitan Area of Porto (North Portugal), of which 36 experienced the death of care receiver (CR). ICs' health profile and burden were assessed. CRs' functional and cognitive status were also appraised. Results: Bereaving caregivers were mostly female, CRs' children, and had on average 60.4 years at baseline. Caregivers spent a mean of 10.1 h/day (SD = 7.7) caring, for 80.6 months (SD = 57.5). The time elapsed since CR's death was 6 months (SD = 3.5) from entering in the study. CRs who died had a mean age of 88.3 (SD = 5.4) years at baseline, and were very dependent. Over a 1-year follow-up, bereaving caregivers showed a significant decrease in mental health following CR's death; on the other hand, caregivers who continued caring improved mental health [F(1, 159) = 4.249, p = 0.041]. Discussion: Ending the caregiver career was marked by a decline in mental health whereas to continue caring was marked by an improvement in this outcome. While it is highly expected that the CR's death will be perceived as a relief considering both the caregiver's characteristics (e.g., medicines) and the CR condition (e.g., high dependence levels), the results suggest an opposite direction. CRs' death seems to arise an emotional burden for IC, at least during the first year, possibly triggering feelings of loneliness and a life without purpose that seems to aggravate mental health issues. Conclusion: The transition to bereavement among ICs seems to lead to a caregiver mental health decline while those who continued caring (and thereby, experiencing caregiving stressors) seems to improve in this outcome. Ceasing caregiving stressors does not seem to contribute better experiencing bereavement among ICs, suggesting the need for support throughout this phase.
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Objectives: This systematic review aimed at assessing the associations between sexual health and subjective well-being in older age groups (i.e. people aged between 40 and ≥90 years). Methods: A systematic search was conducted of the Web of Science, MEDLINE, EBSCO, Scopus, SciELO and LILACS (Latin American and Caribbean Health Sciences Literature) databases for studies published until September 2021. Search strings included a combination of terms such as "sexual health" or "sexuality" and "well-being" and terms related to the measures that assess the constructs of interest. This systematic review followed PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. Results were grouped into four categories that assess the interplay between sexual health and subjective well-being: cognitive and attitudinal factors, sexual behavior, sexual function and sexual satisfaction. The subjective well-being domains that were analyzed were life satisfaction, positive and negative affect, and psychological well-being. Results: A total of 15 quantitative studies were reviewed, of which 14 were articles and 1 was a doctoral dissertation. Findings suggest that living a fulfilling sexual life is an essential part of subjective well-being. Conclusions: This review suggests that programs aiming to promote well-being in older age groups should also encourage a fulfilling sexual life.
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Informal dementia caregivers are at greater risk of experiencing physical and mental health issues as compared to the general population. Internet-based resources may provide accessible opportunities to backing informal dementia caregivers by addressing their information and support needs. This cross-sectional study aims to characterize the use of dementia and caregiving-related internet resources by caregivers and identify variables associated with such use. Primary data were collected through a web-based survey (N = 158). Linear regression models were used to assess the associations of predisposing, enabling, and need variables with the frequency of using the internet for caregiving-related purposes. Most caregivers (93%) have ever used the internet to gather general information about dementia. The frequency of using internet resources was, however, moderate. The multivariable linear regression model suggests that being younger (ß = -0.110, p = 0.009), not having a source of support to provide care (ß = -2.554, p = 0.012), having used a face-to-face psychosocial intervention at some point (ß = 2.731, p = 0.003), being employed (ß = 2.558, p = 0.013), and appraising one's own physical health negatively (vs. appraising it as similar; ß = 3.591, p < 0.001), are associated with a higher frequency of using caregiving-related internet resources. Our findings confirmed the association of age and perceived health status with caregiving-related internet use reported in other studies. The role of enabling variables as lifetime access to psychosocial interventions and having a usual source of support to provide care was a new addition. This study informs the design and deployment of information and support to dementia caregivers.
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[ABSTRACT]. Objectives. This systematic review aimed at assessing the associations between sexual health and subjective well-being in older age groups (i.e. people aged between 40 and ≥90 years). Methods. A systematic search was conducted of the Web of Science, MEDLINE, EBSCO, Scopus, SciELO and LILACS (Latin American and Caribbean Health Sciences Literature) databases for studies published until September 2021. Search strings included a combination of terms such as “sexual health” or “sexuality” and “well-being” and terms related to the measures that assess the constructs of interest. This systematic review followed PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. Results were grouped into four categories that assess the interplay between sexual health and subjective well-being: cognitive and attitudinal factors, sexual behavior, sexual function and sexual satisfaction. The subjective well-being domains that were analyzed were life satisfaction, positive and negative affect, and psychological well-being. Results. A total of 15 quantitative studies were reviewed, of which 14 were articles and 1 was a doctoral dis- sertation. Findings suggest that living a fulfilling sexual life is an essential part of subjective well-being. Conclusions. This review suggests that programs aiming to promote well-being in older age groups should also encourage a fulfilling sexual life.
[RESUMEN]. Objetivos. El objetivo de esta revisión sistemática es evaluar las asociaciones entre salud sexual y bienestar subjetivo en grupos de mayor edad (es decir, personas entre 40 y 90 años o más). Métodos. Se realizó una búsqueda sistemática en las bases de datos Web of Science, MEDLINE, EBSCO, Scopus, SciELO y LILACS (Literatura Latinoamericana y del Caribe en Ciencias de la Salud) de estudios publicados hasta septiembre del 2021. Las cadenas de búsqueda incluyeron una combinación de términos como “salud sexual” o “sexualidad” y “bienestar” y términos relacionados con las medidas que evalúan los constructos de interés. Esta revisión sistemática siguió las directrices PRISMA (sigla en inglés de elementos de referencia para publicar revisiones sistemáticas y metaanálisis). Los resultados se agruparon en cuatro categorías que evalúan la interacción entre la salud sexual y el bienestar subjetivo: factores cognitivos y acti- tudinales, comportamiento sexual, función sexual y satisfacción sexual. Los dominios de bienestar subjetivo analizados fueron la satisfacción vital, el afecto positivo y negativo y el bienestar psicológico. Resultados. Se revisaron 15 estudios cuantitativos en total: 14 artículos y 1 tesis doctoral. Los resultados indican que experimentar una vida sexual satisfactoria es una parte esencial del bienestar subjetivo. Conclusiones. Esta revisión sugiere que los programas destinados a promover el bienestar en los grupos de mayor edad también deben fomentar una vida sexual satisfactoria.
[RESUMO]. Objetivos. Esta revisão sistemática teve como objetivo avaliar as associações entre saúde sexual e bem-estar subjetivo em faixas etárias mais velhas (ou seja, pessoas com idade entre 40 e 90 anos ou mais). Métodos. Foi realizada uma pesquisa sistemática nas bases de dados Web of Science, MEDLINE, EBSCO, Scopus, SciELO e LILACS (Latin American and Caribbean Health Sciences Literature) para estudos publica- dos até setembro de 2021. Os termos de busca incluíram uma combinação de termos como “saúde sexual” ou sexualidade” e ”bem-estar”, e termos relacionados às medidas que avaliam os construtos de interesse. A revisão sistemática seguiu as diretrizes PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses). Os resultados foram agrupados em quatro categorias de avaliação da interação entre saúde sexual e bem-estar subjetivo: fatores cognitivos e atitudinais, comportamento sexual, função sexual e satis- fação sexual. Os domínios de bem-estar subjetivo analisados foram satisfação com a vida, afeto positivo e negativo, e bem-estar psicológico. Resultados. Foram revisados 15 estudos quantitativos, sendo 14 artigos e uma tese de doutorado. Os resul- tados sugerem que viver uma vida sexual plena é uma parte essencial do bem-estar subjetivo. Conclusões. Esta revisão sugere que os programas destinados a promover bem-estar nas faixas etárias mais velhas também devem incentivar uma vida sexual plena.
Subject(s)
Aging , Sexuality , Sexual Health , Personal Satisfaction , Aging , Sexuality , Sexual Health , Personal Satisfaction , Aging , Sexuality , Sexual Health , Personal SatisfactionABSTRACT
During the pandemic, restrictive measures were implemented at Portuguese residential care facilities (PRCF), such as isolating residents and ceasing collective activities. It is important to understand how PRCF are implementing activities that allow residents to occupy their time and fight isolation. As such, we aim to analyze whether: 1. new activities were implemented for residents (identifying which were carried out); 2. occupation activities were provided to isolated residents in their rooms (identifying which were carried out); 3. the implementation of activities is associated with variables like the amount of staff. This is an exploratory, quantitative, and cross-sectional study. An online questionnaire was sent by email to 2325 PRCF and entities were asked to share it with their workers. The study was also divulged on social networks. Data collection occurred between July 8th and October 18th, 2020. The study had 784 staff members participating and 90.8% reported that new activities were implemented at their facilities, predominantly videocalls. Concerning isolated residents most respondents (64.4%) stated that providing activities was impossible. Results showed that those PRCF that expanded teams had a higher percentage of new activities and activities with residents isolated in bedrooms. These results are alarming because while residents should have had more resources to cope with the pandemic, higher risks of unoccupied time and isolation existed, a dramatic situation for its potentially harmful consequences. Focusing on sanitary issues (and less on older adults) may reinforce traditional care models that had shown negative impacts before the pandemic. This highlights the need to evolve the care paradigm during and beyond the pandemic at PRCF: with Person-Centered Care as an option.
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Person-centered care aims to increase and guarantee the quality of care at residential care facilities for older adults. The implementation and development of this approach requires validated assessment tools, which are still lacking in Portugal. This study aims to adapt and validate for the Portuguese population the internationally and widely used essential instrument that is the Staff Assessment Person-Directed Care (SAPDC). The adaptation of the SAPDC included its translation, back translation, and a pilot-study. For validation, staff members were recruited by distributing the study via email and on social media. Respondents included 546 native Portuguese-speaking staff members working at residential care facilities for over 6 months. The mean score of SAPDC was 165.74 (SD = 36.78). The exploratory factor analysis showed eight conceptually distinct dimensions, considered adequate by the expert team. The total scale showed a very good internal consistency (α = .96) and excellent temporal stability assessed by Intraclass Correlation Coefficient (> .90). Providing a Portuguese version of the SAPDC is useful to substantiate technical and scientific advancements and define policies with implications on evolving care approaches. This tool helps optimize the quality and dignification of gerontological practices, which is urgent at Portuguese residential care facilities.
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An early, extensive, accurate, and cost-effective clinical diagnosis of neurocognitive disorders will have advantages for older people and their families, but also for the health and care systems sustainability and performance. BRAINCODE is a technology that assesses cognitive impairment in older people, differentiating normal from pathologic brain condition, based in an EEG biomarkers evaluation. This paper will address BRAINCODE's pilot design, which intends to validate its efficacy, to provide guidelines for future studies and to allow its integration on the SHAPES platform. It is expected that BRAINCODE confirms a regular clinical diagnosis and neuropsychologic tests to discriminate 'normal' from pathologic cognitive decline and differentiates mild cognitive impairment from dementia in older adults with/without subjective cognitive complains.
Subject(s)
Cognitive Dysfunction , Aged , Case-Control Studies , Cognitive Dysfunction/diagnosis , Cognitive Dysfunction/psychology , Humans , Neuropsychological Tests , Pilot Projects , TechnologyABSTRACT
Residential care facilities (RCF) for older people are facing high demands due to the COVID-19 pandemic. The aim of this study was to explore the workers' perspectives on the changes in work and care dynamics amidst the first wave of the pandemic at Portuguese RCF. This is a descriptive, quantitative, and cross-sectional study. An online questionnaire about pandemic-induced changes in work and care dynamics was sent to 2325 RCF. These entities were then asked to share it with their workers. The participants (n = 784) were mostly women (92.7%) and mostly composed of technical directors (41.6%) and direct-care workers (17.1%). The respondents reported that during the first wave of the pandemic, when compared to the pre-pandemic period, there were greater difficulties in providing care related to the basic necessities of older people (52.7%); direct-care workers were required to work more consecutive hours in each shift (69.95%); direct-care workers had to live at RCF (14.8%), and there were changes concerning the possibility of promoting person-centered care (PCC) practices. It also revealed that focusing on disease prevention and sanitary measures alone facilitates practices that reinforce the traditional model of procedure-centered care and have negative consequences on the rights and well-being of those living and working at RCF, exposing and accentuating preexisting vulnerabilities. This study considers the pandemic's serious implications and alarming questions about basic care, dignity, living, and working conditions at Portuguese RCF. These notions reinforce the need for change through redefining care policies and practices in Portuguese RCF beyond the pandemic. The current situation provides an opportunity to adopt a formal PCC model.
Subject(s)
COVID-19 , Pandemics , Aged , COVID-19/epidemiology , Cross-Sectional Studies , Female , Humans , Male , Portugal/epidemiology , Residential FacilitiesABSTRACT
BACKGROUND: iSupport is an online program developed by the World Health Organization to provide education, skills training, and social support to informal carers of persons with dementia. This pilot study examines the feasibility of the protocol for a main effectiveness trial of iSupport-Portugal and explores how the intervention and control arms compare over time on well-being outcomes. METHODS: A mixed-methods experimental parallel between-group design with two arms is followed. Participants were recruited nationwide, by referral or advertising, through the National Alzheimer's Association. Inclusion criteria are being Portuguese adults, providing e-consent, providing unpaid care to someone with dementia for at least 6 months, experiencing relevant scores on burden (≥ 21 on ZBI) or depression or anxiety (≥ 8 on HADS), and using webpages autonomously. Participants were consecutively randomized to receive iSupport-Portugal or an education-only e-book and were not blinded to group assignment. Data were collected online with self-administered instruments, at baseline, 3 and 6 months after. Outcomes comprise caregiver burden, depression, anxiety, QoL, positive aspects of caregiving, and self-efficacy. Generalized estimating equations were used to estimate group, time, and group-by-time effects. Intervention engagement data were extracted from iSupport's platform. Semi-structured interviews were conducted. RESULTS: Forty-two participants were allocated to the intervention (N = 21) and control (N = 21) arms. Participation (78.1%) and retention rates (73.8%) were fair. More carers in the control arm completed the study (N = 20, 95.2%) than in the intervention arm (N = 11; 52.4%) (χ2 = 9.98, p = .002). Non-completers were younger, spent less time caring, and scored higher on anxiety. Among carers in the intervention arm, the average attendance rate was of 53.7%. At post-test 38.9% of participants still used iSupport; the remainder participants interrupted use within 2 weeks (Mdn). For per-protocol analyses, significant group-by-time interaction effects favouring the intervention were found for anxiety (Wald χ2 = 6.17, p = .046) and for environmental QoL (Wald χ2 = 7.06, p = .029). Those effects were not observed in intention-to-treat analyses adjusted for age. Interviewees from the intervention arm (N = 12) reported positive results of iSupport on knowledge and on experiencing positive feelings. No adverse effects were reported. CONCLUSIONS: This study provides information for a forthcoming full-scale effectiveness trial, as on the acceptability and potential results of iSupport-Portugal. iSupport is suggested as a relevant resource for Portuguese carers. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04104568 . 26/09/2019.
Subject(s)
Caregivers , Dementia , Dementia/therapy , Feasibility Studies , Humans , Pilot Projects , Quality of LifeABSTRACT
The COVID-19 pandemic has placed care facilities for older adults under high pressure. This study aimed to identify the perception of staff in Portuguese Residential Care Facilities for Older Adults about their experience during and right after the first lockdown (March/April 2020) due to the COVID-19 pandemic. It comprises 198 respondents who answered an open question about their experiences during the pandemic on an online questionnaire. The main findings suggested three themes: 1) a cascade of new needs on top of old problems; 2) working on the razor's edge: a difficult balance between protecting against the virus and maintaining one's well-being; and 3) a need for support and appreciation. The pandemic has exposed and accentuated the fragilities of Residential Care Facilities in Portugal, which operate with low budgets, and minimum staff. The measures to protect against infection have to be balanced by actions to maintain psychosocial and rehabilitation activities with the residents, to promote their well-being and functional capacity.
Subject(s)
COVID-19 , Pandemics , Aged , COVID-19/epidemiology , Communicable Disease Control , Homes for the Aged , Humans , Portugal/epidemiology , Residential FacilitiesABSTRACT
BACKGROUND: Frailty is associated with a prodromal stage called pre-frailty, a potentially reversible and highly prevalent intermediate state before frailty becomes established. Despite being widely-used in the literature and increasingly in clinical practice, it is poorly understood. OBJECTIVE: To establish consensus on the construct and approaches to diagnose and manage pre-frailty. METHODS: We conducted a modified (electronic, two-round) Delphi consensus study. The questionnaire included statements concerning the concept, aspects and causes, types, mechanism, assessment, consequences, prevention and management of pre-frailty. Qualitative and quantitative analysis methods were employed. An agreement level of 70% was applied. RESULTS: Twenty-three experts with different backgrounds from 12 countries participated. In total, 70 statements were circulated in Round 1. Of these, 52.8% were accepted. Following comments, 51 statements were re-circulated in Round 2 and 92.1% were accepted. It was agreed that physical and non-physical factors including psychological and social capacity are involved in the development of pre-frailty, potentially adversely affecting health and health-related quality of life. Experts considered pre-frailty to be an age-associated multi-factorial, multi-dimensional, and non-linear process that does not inevitably lead to frailty. It can be reversed or attenuated by targeted interventions. Brief, feasible, and validated tools and multidimensional assessment are recommended to identify pre-frailty. CONCLUSIONS: Consensus suggests that pre-frailty lies along the frailty continuum. It is a multidimensional risk-state associated with one or more of physical impairment, cognitive decline, nutritional deficiencies and socioeconomic disadvantages, predisposing to the development of frailty. More research is needed to agree an operational definition and optimal management strategies.
Subject(s)
Frailty , Consensus , Delphi Technique , Frailty/diagnosis , Humans , Quality of Life , Surveys and QuestionnairesABSTRACT
AIM: To explore how informal caregivers of persons with dementia perceive training needs and preferences in the context of online training and support interventions. BACKGROUND: Informal dementia caregivers commonly present high needs across several domains. Paradoxically, they are more likely to have unmet needs and lower levels of service usage when compared to other caregivers. Most studies on unmet needs of dementia caregivers have been quantitative and resorted to assessment checklists, with a minority focusing on subjective needs. DESIGN: Mixed-methods. METHODS: Eighty-eight Portuguese digitally literate caregivers filled a web-based questionnaire collecting written statements on training needs and importance ratings on design preferences. Content analysis of text data was carried out by two independent researchers to check the reliability of the analytic process. Descriptive statistics were produced for ratings on design preferences, and associations with caregivers' sociodemographic and care-related variables were inspected. Reporting followed the criteria for reporting qualitative research checklist. RESULTS: Five main categories of training needs have emerged: knowledge of dementia; care interactions; caregiver self-care; community resources; and laws or regulations affecting the caregiver and the care recipient. The most reported need was on care interactions, on the subcategory of providing good quality care. Thematic prominence was analysed according to the caregiver, caregiving and health perception characteristics, with trends found on formal education, relationship with the care recipient, number of hours caring per week, perceived level of dependence of the care recipient and perceived physical and psychological health status of the caregiver. Most valued design features included the use of plain language, easy to interact interface and communication with a professional. CONCLUSIONS: Findings from this study further support the delivery of comprehensive interventions addressing the multiple needs of caregivers. RELEVANCE TO CLINICAL PRACTICE: Clues are provided for the delivery of online interventions, and conclusions are useful to health professionals working with dementia caregivers.
Subject(s)
Caregivers , Dementia , Caregivers/psychology , Health Status , Humans , Reproducibility of Results , Surveys and QuestionnairesABSTRACT
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.
Subject(s)
COVID-19 , Kidney Failure, Chronic , Adult , Caregivers , Communicable Disease Control , Family , Humans , Kidney Failure, Chronic/therapy , Middle Aged , Pandemics , Patient Care , Qualitative Research , SARS-CoV-2ABSTRACT
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.