Counting what counts: assessing quality of life and its social determinants among nursing home residents with dementia.

BACKGROUND: Maximizing quality of life (QoL) is a major goal of care for people with dementia in nursing homes (NHs). Social determinants are critical for residents' QoL. However, similar to the United States and other countries, most Canadian NHs routinely monitor and publicly report quality of care, but not resident QoL and its social determinants. Therefore, we lack robust, quantitative studies evaluating the association of multiple intersecting social determinants with NH residents' QoL. The goal of this study is to address this critical knowledge gap. METHODS: We will recruit a random sample of 80 NHs from 5 Canadian provinces (Alberta, British Columbia, Manitoba, Nova Scotia, Ontario). We will stratify facilities by urban/rural location, for-profit/not-for-profit ownership, and size (above/below median number of beds among urban versus rural facilities in each province). In video-based structured interviews with care staff, we will complete QoL assessments for each of ~ 4,320 residents, using the DEMQOL-CH, a validated, feasible tool for this purpose. We will also assess resident's social determinants of QoL, using items from validated Canadian population surveys. Health and quality of care data will come from routinely collected Resident Assessment Instrument - Minimum Data Set 2.0 records. Knowledge users (health system decision makers, Alzheimer Societies, NH managers, care staff, people with dementia and their family/friend caregivers) have been involved in the design of this study, and we will partner with them throughout the study. We will share and discuss study findings with knowledge users in web-based summits with embedded focus groups. This will provide much needed data on knowledge users' interpretations, usefulness and intended use of data on NH residents' QoL and its health and social determinants. DISCUSSION: This large-scale, robust, quantitative study will address a major knowledge gap by assessing QoL and multiple intersecting social determinants of QoL among NH residents with dementia. We will also generate evidence on clusters of intersecting social determinants of QoL. This study will be a prerequisite for future studies to investigate in depth the mechanisms leading to QoL inequities in LTC, longitudinal studies to identify trajectories in QoL, and robust intervention studies aiming to reduce these inequities.

Remote visits to address loneliness for people living with dementia in care homes: A descriptive qualitative study of visitors' perceptions.

AIMS: To assess visitors' perceptions of the benefits and challenges related to engaging in a remote visit intervention, which was designed to address the loneliness of people living with moderate to severe dementia in care homes. DESIGN: A qualitative descriptive study. METHODS: Twenty-four people living with dementia in care homes in Canada and their family and friends (i.e., remote visitors) took part in facilitated remote visits in 2021. Each person living with dementia received scheduled visits for 30-60 min per week for 6 weeks. Participants chose to complete one longer visit, or multiple shorter visits, per week. Twenty remote visitors participated in semi-structured interviews after six weeks to discuss their perspectives on the effectiveness, benefits and challenges of the program in relation to addressing experiences of loneliness of the person living with dementia. Conventional content analysis was used to analyze the data. RESULTS: We describe three themes and several sub-themes. Themes support the use of remote visits to enhance, rather than replace, in-person visits; the benefits of remote visits for the person living with dementia and their remote visitors; and the conditions that lead to a successful remote visit. CONCLUSION: Remote visitors reported that facilitated visits had positive effects for both visitors and people living with dementia with respect to loneliness, communication, relationships, and social connection. IMPLICATIONS FOR PATIENT CARE: Clinicians can consider the factors that contributed to positive experiences of remote visits. The factors include individualized, facilitated visits that were flexible, and the use of reliable technology in a supportive, distraction-free environment. IMPACT: Loneliness and social isolation are growing health concerns. When experienced by people living with dementia residing in long-term care homes, loneliness and social isolation can result in lower levels of quality of life and well-being, and higher levels of anxiety and responsive behaviours. Remote visitors perceived that facilitated remote visits have the potential to address loneliness and improve quality of life for people living with dementia and also offer social support to remote visitors. The findings can impact clinician practice by guiding the use of remote visits in care homes, and inform future intervention research to evaluate the effectiveness of remote visits for people living with dementia and their remote visitors. REPORTING METHOD: This manuscript adheres to the relevant EQUATOR guidelines (the Consolidated criteria for reporting qualitative research or COREQ). PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Nurses' knowledge and beliefs on pain management practices with hospitalised persons living with dementia: A qualitative descriptive study.

AIM: To understand nurses' knowledge, beliefs and experiences affect pain management practices in hospitalised persons living with dementia (PLWD). DESIGN: Naturalistic inquiry using qualitative descriptive design. METHODS: Semi-structured interviews were conducted with 12 registered nurses who worked in one acute care hospital in Southern California from October to November 2022. Data were analysed using content analysis to identify themes. RESULTS: Two themes were developed: improvising pain assessment, which included how pain was documented, and administration hesitancy referring to nurse's concerns about PLWD's confusion. Nurses described the challenges of assessing pain in hospitalised PLWD particularly if they were non-verbal and/or demonstrating responsive behaviours. Nurse's years of experience, dementia stigma, and their unconscious biases affected nurses' pain management practices. CONCLUSIONS: The study findings highlight the complex challenges of pain management in hospitalised PLWD that are exacerbated by nurses' knowledge deficits, negative stereotypical beliefs, dementia stigma and unconscious biases towards older people that contributes to undermanaged pain in hospitalised PLWD. IMPLICATIONS: A comprehensive strategy using an implementation framework is needed to address nurse's knowledge gaps, unconscious bias, dementia stigma and techniques that enhance communication skills is suggested. Building a foundation in these areas would improve pain management in hospitalised PLWD. IMPACT: Improving pain management in hospitalised PLWD would improve the quality of life, decrease hospital length of stay, prevent readmissions, and improve nurse satisfaction. REPORTING METHOD: The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ). PATIENT CONTRIBUTIONS: Improving pain management in hospitalised PLWD would prevent long term confusion, episodes of delirium and improve quality of life as they recover from their acute illness for which they required hospital care.

Characteristics Associated with Relationship-Centred and Task-Focused Mealtime Practices in Older Adult Care Settings.

Purpose: To assess care home and staff characteristics associated with task-focused (TF) and relationship-centred care (RCC) mealtime practices prior to the COVID-19 pandemic.Methods: Staff working in Canadian and American care homes were invited to complete a 23-item online survey assessing their perceptions of mealtime care, with one item assessing 26 potential care practices from the Mealtime Relational Care Checklist (relationship-centred = 15; task-focused = 11) reported to occur in the home prior to the pandemic. Multivariate linear regression evaluated staff and care home characteristics associated with mealtime practices.Results: Six hundred and eighty-six respondents completed all questions used in this analysis. Mean TF and RCC mealtime practices were 4.89 ± 1.99 and 9.69 ± 2.96, respectively. Staff age was associated with TF and RCC practices with those 40-55 years reporting fewer TF and those 18-39 years reporting fewer RCC practices. Those providing direct care were more likely to report TF practices. Dissatisfaction with mealtimes was associated with more TF and fewer RCC practices. Homes that were not making changes to promote RCC pre-pandemic had more TF and fewer RCC practices. Newer care homes were associated with more RCC, while small homes (≤49 beds) had more TF practices.Conclusions: Mealtime practices are associated with staff and home factors. These factors should be considered in efforts to improve RCC practices in Canadian homes.

Increasing access to palliative care for patients with advanced cancer of African and Latin American descent: a patient-oriented community-based study protocol.

BACKGROUND: Cancer disparities are a major public health concern in Canada, affecting racialized communities of Latin American and African descent, among others. This is evident in lower screening rates, lower access to curative, and palliative-intent treatments, higher rates of late cancer diagnoses and lower survival rates than the general Canadian population. We will develop an Access to Palliative Care Strategy informed by health equity and patient-oriented research principles to accelerate care improvements for patients with advanced cancer of African and Latin American descent. METHODS: This is a community-based participatory research study that will take place in two Canadian provinces. Patients and community members representatives have been engaged as partners in the planning and design of the study. We have formed a patient advisory council (PAC) with patient partners to guide the development of the Access to Palliative Care Strategy for people of African and Latin American descent. We will engage100 participants consisting of advanced cancer patients, families, and community members of African and Latin American descent, and health care providers. We will conduct in-depth interviews to delineate participants' experiences of access to palliative care. We will explore the intersections of race, gender, socioeconomic status, language barriers, and other social categorizations to elucidate their role in diverse access experiences. These findings will inform the development of an action plan to increase access to palliative care that is tailored to our study population. We will then organize conversation series to examine together with community partners and healthcare providers the appropriateness, effectiveness, risks, requirements, and convenience of the strategy. At the end of the study, we will hold knowledge exchange gatherings to share findings with the community. DISCUSSION: This study will improve our understanding of how patients with advanced cancer from racialized communities in Canada access palliative care. Elements to address gaps in access to palliative care and reduce inequities in these communities will be identified. Based on the study findings a strategy to increase access to palliative care for this population will be developed. This study will inform ways to improve access to palliative care for racialized communities in other parts of Canada and globally.

Social connection measures for older adults living in long-term care homes: a systematic review protocol.

BACKGROUND: Various measures have assessed social connection in long-term care (LTC) home residents. However, they use inconsistent terminology, conceptualizations, and operationalizations of social connection. In this systematic review protocol, we propose a study that will characterize measures that assess aspects of LTC home residents' social connection using a unified conceptual model. The objectives are to (1) describe and analyze the measures and (2) evaluate their measurement properties. METHODS: A literature search was conducted in MEDLINE ALL (Ovid), Embase Classic and Embase (Ovid), Emcare Nursing (Ovid), APA PsycInfo (Ovid), Scopus, CINAHL Complete (EBSCOhost), AgeLine (EBSCOhost), and Sociological Abstracts (ProQuest). We will include primary research papers with no language limit, published from database inception. We will include studies of a measure of any aspect of social connection in LTC home residents that report at least one measurement property. Independently, two reviewers will screen titles and abstracts, review full-text articles against eligibility criteria, and extract data from included studies. In objective 1, we will analyze identified tools using an adapted framework method. In objective 2, we will evaluate each measure's measurement properties using COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology. We will engage experts and stakeholders to assist with interpreting results and translating knowledge. DISCUSSION: Our findings will inform the social connection in long-term care home residents (SONNET) study's development of a novel, person-centered measure for social connection in LTC home settings. We will present our findings in academic and non-academic forums, including conferences, peer-reviewed journals, and other publications. SYSTEMIC REVIEW REGISTRATION: Prospero-"Systematic review of measures of social connection used in long-term care home research." CRD42022303526 .

"Nobody But a Family Member Can Do It Quite the Same Way": Understanding the Meaning of Mealtimes to Residents and Families in Long-Term Care Homes During the Pandemic.

BACKGROUND AND OBJECTIVES: Meals in long-term care (LTC) are essential to residents not only for nutrition and their physical well-being but also for their social interactions supporting resident quality of life. This study aims to understand the mealtime experiences of residents and family care partners during the coronavirus 2019 disease (COVID-19) pandemic when restrictions were put in place in LTC and retirement homes. RESEARCH DESIGN AND METHODS: Interpretive description analysis of qualitative interviews in LTC and retirement homes, with 17 family care partners and 4 residents. Convenience and snowball sampling was used to recruit participants for telephone interviews. RESULTS: Three themes were generated. Compromised mealtimes mean compromising community-meals were seen by participants as a key social and community-building event of the home; they reported this loss of community with pandemic restrictions. Participants noted that family care partners are indispensable at meals for social, psychological, and physical support. The dangers of eating alone spoke to the social isolation reported by participants that occurred during the pandemic and the risks they described of eating alone. DISCUSSION AND IMPLICATIONS: This study confirms the importance of mealtimes in LTC and retirement homes to community building and extends our understanding of the importance of family inclusion at meals and why eating alone, as happened during COVID-19, was so detrimental to residents. Effort needs to be made to value this communal activity for the well-being of residents.

Assessing social connection for long-term care home residents: Systematic review using COnsensus-based Standards for the selection of health Measurement INstruments guidelines.

Social connection is important for long-term care (LTC) residents' quality of life and care. However, there is a lack of consensus on how to measure it and this limits ability to find what improves and impairs social connection in LTC homes. We therefore aimed to systematically review and evaluate the measurement properties of existing measures of social connection for LTC residents, to identify which, if any, measures can be recommended. We searched eight electronic databases from inception to April 2022 for studies which reported on psychometric properties of a measure of any aspect(s) of social connection (including social networks, interaction, engagement, support, isolation, connectedness, and loneliness) for LTC residents. We used COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines to evaluate the measurement properties reported for each identified measure and make recommendations. We identified 62 studies reporting on 38 measures; 21 measured quality of life, well-being or life satisfaction and included a social connection subscale or standalone items and 17 measures specifically targeted social connection. We found there was little high-quality evidence on psychometric properties such as sufficient content validity (n = 0), structural validity (n = 3), internal consistency (n = 3), reliability (n = 1), measurement error (n = 0), construct validity (n = 4), criterion validity (n = 0) and responsiveness (n = 0). No measures demonstrated satisfactory psychometric properties on all these aspects, so none could be recommended for use. Thirty-four measures have the potential to be recommended but require further research to assess their quality and the remaining four are not recommended for use. Our review therefore found that no existing measures have sufficient evidence to be recommended for assessment of social connection in residents of LTC homes. Further validation and reliability studies of existing instruments or the development of new measures are needed to enable accurate measurement of social connection in LTC residents for future observational and interventional studies. Highlights: Social connection is fundamental to person-centered care in long-term care homes.There is insufficient evidence for the reliability and validity of existing measures.No current measures can be recommended for use based on existing evidence.A reliable and valid measure of social connection is needed for future research.

IMPAACT: IMproving the PArticipAtion of older people in policy decision-making on common health CondiTions - a study protocol.

INTRODUCTION: Rapid population ageing is a demographic trend being experienced and documented worldwide. While increased health screening and assessment may help mitigate the burden of illness in older people, issues such as misdiagnosis may affect access to interventions. This study aims to elicit the values and preferences of evidence-informed older people living in the community on early screening for common health conditions (cardiovascular disease, diabetes, dementia and frailty). The study will proceed in three Phases: (1) generating recommendations of older people through a series of Citizens' Juries; (2) obtaining feedback from a diverse range of stakeholder groups on the jury findings; and (3) co-designing a set of Knowledge Translation resources to facilitate implementation into research, policy and practice. Conditions were chosen to reflect common health conditions characterised by increasing prevalence with age, but which have been underexamined through a Citizens' Jury methodology. METHODS AND ANALYSIS: This study will be conducted in three Phases-(1) Citizens' Juries, (2) Policy Roundtables and (3) Production of Knowledge Translation resources. First, older people aged 50+ (n=80), including those from traditionally hard-to-reach and diverse groups, will be purposively recruited to four Citizen Juries. Second, representatives from a range of key stakeholder groups, including consumers and carers, health and aged care policymakers, general practitioners, practice nurses, geriatricians, allied health practitioners, pharmaceutical companies, private health insurers and community and aged care providers (n=40) will be purposively recruited for two Policy Roundtables. Finally, two researchers and six purposively recruited consumers will co-design Knowledge Translation resources. Thematic analysis will be performed on documentation and transcripts. ETHICS AND DISSEMINATION: Ethical approval has been obtained through the Torrens University Human Research Ethics Committee. Participants will give written informed consent. Findings will be disseminated through development of a policy brief and lay summary, peer-reviewed publications, conference presentations and seminars.

Acceptability of personal contact interventions to address loneliness for people with dementia: An exploratory mixed methods study.

Background: Personal contact interventions involve routine visits with a person or animal to address loneliness. Research supports the promise of these interventions to address loneliness among cognitively intact older adults, but little is known about their use with people with dementia. Objective: To assess the acceptability of personal contact interventions for use to address loneliness with older people with dementia, according to formal and informal care providers. Design: Cross-sectional, mixed methods complementarity design. Setting: Ontario, Canada. Participants: A purposive sample of 25 family members, friends, and health care providers of people with dementia. Methods: Participants attended a face-to-face interview to discuss the acceptability of personal contact interventions. Participants completed questionnaires to rate acceptability (adapted Treatment Perception and Preference measure). A semi-structured interview followed to discuss the ratings and features of personal contact (with another person or animal) in more detail. The analysis involved descriptive statistics (quantitative data) and conventional content analysis (qualitative data). During the interpretation of the results, the qualitative findings were compared to the quantitative results to provide context and understand participants' perceptions of intervention acceptability in more depth; these are presented together in the results to demonstrate their distinct and complementary contributions to the findings. Results: Personal contact with a person or animal was rated as effective, logical, suitable, and low risk to address loneliness by over 80% of participants. Participants' willingness to engage in this type of contact, for example as a visitor or as a facilitator of animal contact, was 72%. Participants emphasized the benefits of personal contact. The findings highlight that individualized, flexible interventions that include appropriate facilitation are needed. Conclusions: Future studies to develop and test personal contact interventions should involve flexible delivery, assess the feasibility and acceptability of these interventions (as in a Phase 2 trial of a complex intervention), and focus on the experiences of people with dementia.Tweetable Abstract: Tailored, routine, and facilitated contact with a person or animal shows promise to address loneliness for people with dementia.What is already known about this topic:• Loneliness is emotionally painful and harms the health and quality of life of those that experience it.• Personal contact interventions refer to routine visits with another person or animal and have been found effective in addressing loneliness among cognitively intact older adults.What this paper adds:• Friends, family members and health care providers of people with dementia view personal contact interventions as logical, suitable and effective to address loneliness of older adults with dementia.• Personal contact interventions are not always easy to implement and do not automatically promote meaningful connection and prevent loneliness for people with dementia.• Strategies to tailor and facilitate personal contact interventions are needed to promote their effectiveness when used with people with dementia.