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Abstract Background The increased number of emergency department visits among older adults living with chronic obstructive pulmonary disease reflects the challenges of hospital discharge transition, especially in those from a cultural minority. The barriers and facilitators of this discharge from the perspective of formal and informal care providers, such as nurses and family caregivers, are important to identify to provide effective symptom management and quality of care. The purpose of this study was to describe the barriers and facilitators in caring for Muslim older adults with chronic obstructive pulmonary disease (COPD) during hospital discharge transitional care. Methods A descriptive qualitative study was conducted in a hospital of Thailand where Muslim people are a cultural minority. Thirteen family caregivers of Muslim older adults living with COPD and seven nurses were purposively recruited and participated in semi-structured interviews and focus group discussions. Content analysis was used to analyze the data. Results Five barriers and three facilitating factors of transitional care for Muslim older adults living with COPD were outlined. Barriers included: (1) lack of knowledge about the causes and management of dyspnea, (2) inadequate discharge preparation, (3) language barrier, (4) discontinuity of care, and (5) COVID-19 epidemic. Facilitators included: (1) the ability to understand Malayu language, (2) the presence of healthcare professionals of the same gender, and (3) the presence of Muslim healthcare providers. Conclusion Family caregivers require more supportive care to meet the care needs of Muslim older adults living with COPD. Alternative nurse-based transitional care programs for these older adult caregivers should be developed.

Digital health has added numerous promising solutions to enhance the health and wellness of people with neurocognitive disorders (NCDs) and their informal caregivers. (1) Background: It is important to obtain a comprehensive view of currently available technologies, their outcomes, and conditions of success to inform recommendations regarding digital health solutions for people with NCDs and their caregivers. This environmental scan was performed to identify the features of existing digital health solutions relevant to the targeted population. This work reviews currently available digital health solutions and their related characteristics to develop a decision support tool for older adults living with mild or major neurocognitive disorders and their informal caregivers. This knowledge will aid the development of a decision support tool to assist older adults and their informal caregivers in their search for adequate digital health solutions according to their needs and preferences based on trustable information. (2) Methods: We conducted an environmental scan to identify digital health solutions from a systematic review and targeted searches in the grey literature covering the regions of Canada and Europe. Technological tools were scanned based on a preformatted extraction grid. We assessed their relevance based on selected attributes and summarized the findings. (3) Results: We identified 100 available digital health solutions. The majority (56%) were not specific to NCDs. Only 28% provided scientific evidence of their effectiveness. Remote patient care, movement tracking, and cognitive exercises were the most common purposes of digital health solutions. Most solutions were presented as decision aid tools, pill dispensers, apps, web, or a combination of these platforms. (4) Conclusions: This environmental scan allowed for identifying current digital health solutions for older adults with mild or major neurocognitive disorders and their informal caregivers. Findings from the environmental scan highlight the need for additional approaches to strengthen digital health interventions for the well-being of older adults with mild and major NCDs and their informal and formal healthcare providers.

Context: Governments made emergency declarations to restrict the presence of family carers in long-term care homes (LTCHs) as part of infection control measures during the pandemic. Within Canada, two visitor statuses were created: ‘essential’ to the health of the resident and ‘non-essential’ or ‘social visitor’, who were subject to additional restrictions. Objective: This study explored family carers’ experiences navigating in-person access to their relatives in LTCH during the pandemic. Methods: Using interpretive description, a sample of 14 family carers (nine daughters, five spouses) living in British Columbia, Canada, participated in in-depth interviews via video call about their experiences between March 2020 and June 2021. Findings: Analyses illustrated variability in carers’ visitor status across families and over time. Two key themes were identified: 1) “Fighting a Losing Battle” describes how reductionist attitudes and policies minimized the role of caregiving and resulted in traumatic disruptions in familial relationships; 2) “Who’s In and Who’s Out” captures inequities in how visitor status policies were applied. Limitations: Restrictions on conducting research during the pandemic resulted in a smaller sample of family carer participants. Implications: Findings highlight the patchwork implementation of visitor policies over the initial 17 months of the pandemic and the precarious space family carers continue to occupy within the LTC sector. Future research should focus on formalising support for family presence during public health emergencies.

Background: Amyotrophic lateral sclerosis (ALS) is currently an incurable and fatal disease, which often comes with a high symptom burden at the end-of-life stage. Little is known about nurses’ experiences in this context. Objective: To explore the experience of nurses caring for people with ALS at end-of-life. Design: A qualitative multiple-case study design. Method: Individual semi-structured interviews were conducted between February and August 2022 with nurses from Quebec, Canada, who had provided care to at least one person living with ALS at the end-of-life in the past 12 months. The content analysis method was used for data analysis and within-case and cross-case analyses were conducted, as well as comparative analyses according to the type of position held by the participants that determined the cases: (1) home care, (2) hospital and (3) palliative care home. Results: Participating in the study were 24 nurses: 9 were from home care, 8 from hospitals and 7 from palliative care homes. Five main themes were identified: (1) identifying the end-of-life period, (2) communication issues, (3) supporting the need for control, (4) accompanying in the fight culture and (5) the extent of the need for care. A sixth theme was also added in order to report the need expressed by nurses to improve their care of patients living with ALS at end-of-life. Conclusions: Although nurses’ experiences varied among the different settings, the study identifies the pressing need for better education and, above all, more resources when caring for a person living with ALS at end-of-life. Future research should explore the experiences of other members of the healthcare team and test interventions designed to improve the quality of life and end-of-life of people living with ALS.

Abstract Background Little prior research focused on person-centred care and support (PCCS) for dementia in home, community or outpatient care. We aimed to describe what constitutes PCCS, how to implement it, and considerations for women who comprise the majority of affected persons (with dementia, carers). Methods We conducted a scoping review by searching multiple databases from 2000 inclusive to June 7, 2020. We extracted data on study characteristics and PCCS approaches, evaluation, determinants or the impact of strategies to implement PCCS. We used summary statistics to report data and interpreted findings with an existing person-centred care framework. Results We included 22 studies with qualitative (55%) or quantitative/multiple methods design (45%) involving affected persons (50%), or healthcare workers (50%). Studies varied in how PCCS was conceptualized; 59% cited a PCC definition or framework. Affected persons and healthcare workers largely agreed on what constitutes PCCS (e.g. foster partnership, promote autonomy, support carers). In 4 studies that evaluated care, barriers of PCCS were reported at the affected person (e.g. family conflict), healthcare worker (e.g. lack of knowledge) and organizational (e.g. resource constraints) levels. Studies that evaluated strategies to implement PCCS approaches were largely targeted to healthcare workers, and showed that in-person inter-professional educational meetings yielded both perceived (e.g. improved engagement of affected persons) and observed (e.g. use of PCCS approaches) beneficial outcomes. Few studies reported results by gender or other intersectional factors, and none revealed if or how to tailor PCCS for women. This synthesis confirmed and elaborated the PCC framework, resulting in a Framework of PCCS for Dementia. Conclusion Despite the paucity of research on PCCS for dementia, synthesis of knowledge from diverse studies into a Framework provides interim guidance for those planning or evaluating dementia services in outpatient, home or community settings. Further research is needed to elaborate the Framework, evaluate PCCS for dementia, explore determinants, and develop strategies to implement and scale-up PCCS approaches. Such studies should explore how to tailor PCCS needs and preferences based on input from persons with dementia, and by sex/gender and other intersectional factors such as ethnicity or culture.

Abstract Background Technology offers opportunities to support older adults with mild cognitive impairments to remain independent and socially connected, but is often not used. Although determinants of technology use among older adults in general are well studied, much less is known about how these factors impact technology use behaviour in cognitively impaired older adults. This study aimed to bridge this gap in research by examining the factors underlying technology use in community-dwelling older adults with mild cognitive impairments. Methods We applied a generic qualitative design and used 16 semi-structured interviews to collect data from Belgian (Flemish) community-dwelling older adults diagnosed with Mild Cognitive Impairment or dementia and informal caregivers. To get data from different perspectives, a focus group with professional caregivers was added. We used thematic analysis with an inductive approach to identify and select themes from the data. Results We identified two themes: introduction of technology and determinants of technology adoption and continued use. Successful technology adoption in cognitively impaired older adults is need-driven and subject to individual, technological and contextual characteristics. Specific for older adults with cognitive impairments are the importance of disease awareness and cognitive ability for adoption and continued use, respectively. Although social support can be a valuable alternative to technology, it is an important facilitator of continued technology use in these older adults. Similarly, integration of technologies in daily routines can buffer discontinuation of technologies. Conclusions Future research is encouraged to validate our findings in a postpandemic era and to further develop a novel theoretical framework for technology acceptance among older adults with cognitive impairments. Moreover, identification of crucial determinants as well as strategies to remove use barriers are also important future research tasks. Clinical practice should focus on improving disease awareness to facilitate technology adoption and policies should invest in training and support of professional caregivers and in reimbursement strategies to facilitate implementation of technology in practice.

BackgroundDementia is one of the main public health priorities for current and future societies worldwide. Over the past years, eHealth solutions have added numerous promising solutions to enhance the health and wellness of people living with dementia-related cognitive problems and their primary caregivers. Previous studies have shown that an environmental scan identifies the knowledge-to-action gap meaningfully. This paper presents the protocol of an environmental scan to monitor the currently available eHealth solutions targeting dementia and other neurocognitive disorders against selected attributes. ObjectiveThis study aims to identify the characteristics of currently available eHealth solutions recommended for older adults with cognitive problems and their informal caregivers. To inform the recommendations regarding eHealth solutions for these people, it is important to obtain a comprehensive view of currently available technologies and document their outcomes and conditions of success. MethodsWe will perform an environmental scan of available eHealth solutions for older adults with cognitive impairment or dementia and their informal caregivers. Potential solutions will be initially identified from a previous systematic review. We will also conduct targeted searches for gray literature on Google and specialized websites covering the regions of Canada and Europe. Technological tools will be scanned based on a preformatted extraction grid. The relevance and efficiency based on the selected attributes will be assessed. ResultsWe will prioritize relevant solutions based on the needs and preferences identified from a qualitative study among older adults with cognitive impairment or dementia and their informal caregivers. ConclusionsThis environmental scan will identify eHealth solutions that are currently available and scientifically appraised for older adults with cognitive impairment or dementia and their informal caregivers. This knowledge will inform the development of a decision support tool to assist older adults and their informal caregivers in their search for adequate eHealth solutions according to their needs and preferences based on trustable information. International Registered Report Identifier (IRRID)DERR1-10.2196/41015

Introduction Palliative and end-of-life (EOL) care will increasingly be required in years to come as a result of an ageing population. An important component of this type of care is the inclusion of informal caregivers, who are family members or friends offering unpaid assistance to older adults with a terminal illness. Although systematic reviews were conducted on topics related to the inclusion of informal caregivers in the palliative and EOL care of older adults, several gaps remain as they were specific to a health condition and/or setting. The purpose of our scoping review is to map the extent of knowledge on this subject.Methods and analysis We will conduct our scoping review following Levac’s methodology. We will gather publications of various types through nine databases, manual searches in journals and search engines and reference lists. The selection process will be conducted by two independent reviewers and consist of screening by title and abstract, followed by reading the full text to confirm eligibility. An independent reviewer will then extract data and assess quality from included publications. Data extracted from different publication types will be synthesised together in the Excel software using a content analysis method, with quantitative data transformed into a qualitative description. Results will be presented through descriptive statistics and themes. During different steps of the review, we will also consult informal caregivers and health professionals for feedback as stakeholders.Ethics and dissemination The conduction of this scoping review requires no ethical approval. Results will provide an overview of the state of knowledge on the inclusion of informal caregivers in palliative and EOL of older adults, which could help guide clinical practice, the development of interventions and policy and further research. We will disseminate these results by publishing an article, presenting in conferences, and discussing findings with stakeholders.

Abstract Background Healthy aging (HA) is a contemporary challenge for population health worldwide. Electronic health (e-Health) interventions have the potential to support empowerment and education of adults aged 50 and over. Objectives To summarize evidence on the effectiveness of e-Health interventions on HA and explore how specific e-Health interventions and their characteristics effectively impact HA. Methods A systematic review was conducted based on the Cochrane Collaboration methods including any experimental study design published in French, Dutch, Spanish, and English from 2000 to 2018. Results Fourteen studies comparing various e-Health interventions to multiple components controls were included. The target population, type of interventions, and outcomes measured were very heterogeneous across studies; thus, a meta-analysis was not possible. However, effect estimates indicate that e-Health interventions could improve physical activity. Positive effects were also found for other healthy behaviors (e.g., healthy eating), psychological outcomes (e.g., memory), and clinical parameters (e.g., blood pressure). Given the low certainty of the evidence related to most outcomes, these results should be interpreted cautiously. Conclusions This systematic review found limited evidence supporting the effectiveness of e-Health interventions, although the majority of studies show positive effects of these interventions for improving physical activity in older adults. Thus, better quality evidence is needed regarding the effects of e-Health on the physiological, psychological, and social dimensions of HA. Systematic review registration The review protocol was registered in PROSPERO (registration number: CRD42016033163 )

Abstract Background Physically aggressive behaviors are very common among older people living with cognitive impairment. These behaviors may have significant consequences for family and formal caregivers, as well as for the other people in the older people’s environment, and are also a frequent cause of institutionalization. Two relevant systematic reviews have been published on the subject but do not specifically target physically aggressive behaviors or only focus on care in nursing homes. Moreover, they do not address the causes, associated factors, and consequences of these behaviors, even though these should indeed be considered when developing interventions. Thus, the purpose of this scoping review is to map the state of knowledge on these physically aggressive behaviors with a view to developing personalized interventions. Offering a humanist and relational perspective by which these behaviors may be examined, the Senses Framework will guide this review. Methods The scoping review method of Levac, Colquhoun, and O’Brien will be used. Several databases (e.g., CINAHL, PubMed, PsycINFO, SCOPUS, Grey Literature Report, clinical trials registries) will be searched for literature published in the past 15 years, using a combination of keywords and descriptors. Other data sources will be used to identify non-indexed literature or unpublished results (e.g., articles references, journal tables of content, contact with key authors). The literature will be selected regardless of setting, if it concerns older people, aged 65, or older with cognitive impairment who present physically aggressive behaviors. Data will be extracted systematically by the research team. A quality assessment of the literature will be done to consider this aspect in the data synthesis. A content analysis will be used to synthesize the results. Discussion No scoping review has been found on the physically aggressive behaviors of older people living with cognitive impairment in various settings. The results of this review will identify needs for further research and for clinical and training development on this problem from a humanist standpoint. Systematic review registration Currently, it is not possible to register a systematic scoping review protocol (e.g., PROSPERO).

Introduction: Vocal behaviours (VB) are frequent in long-term care facilities (LTCF) and have many negative consequences. Interventions to decrease VB have limited clinical impact. Objective: This pilot study aimed to provide preliminary evidence on the effects of an intervention approach based on the meanings of VB in older people living with a neurocognitive disorder in LTCF. Methods: A mixed methods action research study was used. Fourteen triads (n=43) made up of an older person who manifested VB, a family member, and formal caregivers were included. An approach based on the meanings of VB was implemented in five LTCF. Semi-structured interviews took place with some participants. Tools were used at four-time points to measure five variables: the frequency of VB, the well-being of older people, the perceived disruptiveness of VB, the partnership-based decision-making and the empowerment felt by family and formal caregivers. Results: The approach improved the perception of family and formal caregivers toward older people. This led to habit changes that influenced positively the frequency of VB and the well-being of older people. Formal and family caregivers also perceived VB as less disturbing and felt more empowered relatively to VB. The attitude of formal caregivers toward families evolved positively. No other changes were noted on partnership-based decision-making. Discussion and conclusion: This study indicates the potential of this approach to improve the well-being of older people who manifested VB, their families, and formal caregivers. This approach could be implemented in LTCF, tested and adapted for other behaviours.