Strategies used during the cognitive evaluation of older adults with dual sensory impairment: a scoping review.

BACKGROUND: Dual sensory impairment (DSI), the combination of visual and hearing impairments, is associated with increased risk for age-related cognitive decline and dementia. Administering cognitive tests to individuals with sensory impairment is challenging because most cognitive measures require sufficient hearing and vision. Considering sensory limitations during cognitive test administration is necessary so that the effects of sensory and cognitive abilities on test performance can be differentiated and the validity of test results optimized. OBJECTIVE: To review empirical strategies that researchers have employed to accommodate DSI during cognitive testing of older adults. METHODS: Seven databases (MEDLINE, Embase, Web of Science, CINAHL, PsycINFO, Global Health and the Evidence-Based Medicine Reviews databases) were searched for relevant articles integrating the three concepts of cognitive evaluation, aging, and DSI. Given the inclusion criteria, this scoping review included a total of 67 papers. RESULTS: Twenty-eight studies reported five categories of strategies for cognitive testing of older adult participants with DSI: the assistance of experts, the modification of standardized test scoring procedures, the use of communication strategies, environmental modifications, and the use of cognitive tests without visual and/or auditory items. CONCLUSIONS: The most used strategy reported in the included studies was drawing on the assistance of team members from related fields during the administration and interpretation of cognitive screening measures. Alternative strategies were rarely employed. Future research is needed to explore the knowledge-to-practice gap between research and current clinical practice, and to develop standardized testing strategies.

Development and validation of risk of CPS decline (RCD): a new prediction tool for worsening cognitive performance among home care clients in Canada.

BACKGROUND: To develop and validate a prediction tool, or nomogram, for the risk of a decline in cognitive performance based on the interRAI Cognitive Performance Scale (CPS). METHODS: Retrospective, population-based, cohort study using Canadian Resident Assessment Instrument for Home Care (RAI-HC) data, collected between 2010 and 2018. Eligible home care clients, aged 18+, with at least two assessments were selected randomly for model derivation (75%) and validation (25%). All clients had a CPS score of zero (intact) or one (borderline intact) on intake into the home care program, out of a possible score of six. All individuals had to remain as home care recipients for the six months observation window in order to be included in the analysis. The primary outcome was any degree of worsening (i.e., increase) on the CPS score within six months. Using the derivation cohort, we developed a multivariable logistic regression model to predict the risk of a deterioration in the CPS score. Model performance was assessed on the validation cohort using discrimination and calibration plots. RESULTS: We identified 39,292 eligible home care clients, with a median age of 79.0 years, 62.3% were female, 38.8% were married and 38.6% lived alone. On average, 30.3% experienced a worsening on the CPS score within the six-month window (i.e., a change from 0 or 1 to 2, 3, 4, 5, or 6). The final model had good discrimination (c-statistic of 0.65), with excellent calibration. CONCLUSIONS: The model accurately predicted the risk of deterioration on the CPS score over six months among home care clients. This type of predictive model may provide useful information to support decisions for home care clinicians who use interRAI data internationally.

"I can't be the nurse I want to be": Counter-stories of moral distress in nurses' narratives of pediatric oncology caregiving.

As a term used in nursing and other health professions to describe when one is prevented by institutional constraints from pursuing the right course of action, moral distress has gained traction to examine the effects of restructuring on health and social care providers. Using a critical narrative methodology, this paper presents the counter-stories of nine pediatric oncology nurses in Ontario, Canada, whose stories illustrate the embeddedness of their caregiving and moral distress within institutional contexts that leave them stretched thin amongst multiple caregiving and administrative demands, and that limit their capacities to be the nurses they want to be. Informed by feminist philosophical theorizations of moral distress, we elucidate how the nurses' counter-stories: (i) re-locate the sources of their moral distress within institutional constraints that fracture their moral identities and moral relationships, and (ii) dis-locate dominant narratives of technological cure by ascribing value and meaning to the relational care through which they sustain moral responsibilities with patients and their families. By making visible the relational care that they find meaningful and that brings them in proximity to patients and families, these counter-stories assist nurses in restoring their damaged moral identities. This study demonstrates the power of identifying and mobilizing counter-stories in tracing and critically examining the conditions that structure nurses' experiences of moral distress. The findings add theoretical and empirical depth to contemporary understandings of moral distress and complement ongoing public discussion of burnout among nurses and other health care workers during the COVID-19 pandemic. These counter-narratives may act as resources for resistance among nurses, help to reduce the distance between management and health care workers, and catalyze changes in policy and practice so that nurses, and the full scope of their caregiving, are valued.

Language-Based Strategies that Support Person-Centered Communication in Formal Home Care Interactions with Persons Living with Dementia.

Language-based strategies are recommended to improve coherence, clarity, reciprocity, and continuity of interactions with persons living with dementia. Person-centered care is the gold standard for caring for persons with dementia. Person-centered communication (PCC) strategies include facilitation, recognition, validation, and negotiation. Little is known about which language-based strategies support PCC in home care. Accordingly, this study investigated the overlap between language-based strategies and PCC in home care interactions. Analysis of conversation of 30 audio-recorded interactions between personal support workers (PSWs) and persons living with dementia was conducted. The overlap between PCC and language-based strategies was analyzed. Of 11,347 communication units, 2578 overlapped with PCC. For facilitation, 21% were yes/no questions. For recognition, 25% were yes/no questions and 22% were affirmations. For validation, 81% were affirmations and positive feedback. Finally, 60% were yes/no questions for negotiation. The findings highlight the person-centeredness of language-based strategies. PSWs should use diverse language-based strategies that are person-centered.

Supportive strategies for nonverbal communication with persons living with dementia: A scoping review.

BACKGROUND: Many people living with dementia experience challenges comprehending language and benefit from nonverbal communication supports. Little published empirical evidence exists for care partners regarding supportive strategies for nonverbal communication with people living with dementia. This study aimed to conduct a scoping review of nonverbal strategies for care partners which have been observed to support communication with people living with dementia. METHODS: Current best practices for scoping research guided this review. CINAHL, PsycInfo, Scopus, and Pubmed databases were searched December 8, 2020. Empirical studies that examined the supportiveness of nonverbal communication strategies used by care partners of people living with dementia were eligible. All publication dates were included. Eligible studies were published in English in peer-reviewed journals. Studies were screened first by title and abstract, and subsequently by full-text review. Data charting was conducted using an evidence summary table, which was subsequently used for analysis. Results were presented in the form of a written summary. RESULTS: Sixteen studies were included in the final review. Six categories of supportive nonverbal communication strategies were identified: eye contact, gestures, facial expression, touch, close proximity, and frontal orientation. Studies observed six outcomes which indicated that these nonverbal strategies were supportive for communication with people living with dementia; however, person-centered outcomes were limited. CONCLUSIONS: The review identified supportive nonverbal communication strategies used by care partners with people living with dementia in the current literature. Disagreement exists in the literature regarding which outcomes define supportive nonverbal communication with people living with dementia. This in combination with the benefits of person-centered approaches to care with people living with dementia presents a critical need to delineate which nonverbal communication strategies are person-centered in future research. TWEETABLE ABSTRACT: Six supportive nonverbal communication strategies identified by scoping literature review, but there is disagreement in how the literature defines "supportive" @marie_y_s @EmmaBender19.

A Newly Identified Impairment in Both Vision and Hearing Increases the Risk of Deterioration in Both Communication and Cognitive Performance.

Vision and hearing impairments are highly prevalent in adults 65 years of age and older. There is a need to understand their association with multiple health-related outcomes. We analyzed data from the Resident Assessment Instrument for Home Care (RAI-HC). Home care clients were followed for up to 5 years and categorized into seven unique cohorts based on whether or not they developed new vision and/or hearing impairments. An absolute standardized difference (stdiff) of at least 0.2 was considered statistically meaningful. Most clients (at least 60%) were female and 34.9 per cent developed a new sensory impairment. Those with a new concurrent vison and hearing impairment were more likely than those with no sensory impairments to experience a deterioration in receptive communication (stdiff = 0.68) and in cognitive performance (stdiff = 0.49). After multivariate adjustment, they had a twofold increased odds (adjusted odds ratio [OR] = 2.1; 95% confidence interval [CI]:1,87, 2.35) of deterioration in cognitive performance. Changes in sensory functioning are common and have important effects on multiple health-related outcomes.

Developing Behavioral Coding to Understand Family Communication Breakdown in Dementia Care.

Communication breakdown is a challenge for family caregivers of persons living with dementia. We adapted established theory and scales for computer-assisted behavioral coding to characterize caregiver communication for a secondary analysis. We developed verbal, nonverbal, and breakdown coding schemes and established reliability (κ > .85). Within the 221 family caregiving videos analyzed, 55% of exchanges were interactive, 30% were silence, 4% consisted of talking to self or others, and 8% included a breakdown. An average of 2.4 (SD = 1.9) breakdowns occurred per observation and were successfully resolved 85% of the time, with 31% being resolved most successfully following only one flag and repair strategy. Caregivers were the primary speakers (67%); their communication preceded most breakdown (65%), and they primarily initiated the repairs after a breakdown (70%). Common repair strategies included clarifications (31%), asking questions (24%), and repeating information (24%). Associations between communication strategies and repair success will provide evidence for caregiver training.

Quality home care for persons living with dementia: Personal support workers' perspectives in Ontario, Canada.

There is a global need to understand how the quality of home care for persons living with dementia is perceived by their most frequent formal caregivers, personal support workers (PSW), especially given the expected rise in the prevalence of dementia. The aim of this study was to explore the perceptions of PSW regarding what constitutes quality home care for persons with dementia. Qualitative content analysis was undertaken to interpret semi-structured interviews with PSW (N = 15). Study findings indicate that quality home care is perceived to be (1) person-centered; (2) provided by PSW with dementia-specific education and training; (3) facilitated by specific PSW experiences, abilities and characteristics; (4) enhanced by accessible information, services and education for persons with dementia and their caregivers; (5) provided by an inclusive dementia care team; and (6) facilitated by organisational supports and respect. However, findings also indicated differences in what PSW perceive as quality home care versus what they are experiencing when providing care for persons with dementia. Participants advocated for increased supports to them through ongoing dementia-specific education and training, increased teamwork among care providers, increased wages, sufficient and qualified staffing, and increased exchange of client information. The findings highlight the importance of exploring front-line workers' perspectives and how they can help revise current healthcare policies and inform future policy development.

Communication in home care: Understanding the lived experiences of formal caregivers communicating with persons living with dementia.

BACKGROUND: Little is known about formal caregivers' lived experiences communicating with persons living with dementia (PLWD) who live in their own homes. Most information comes from research conducted in long-term care settings or home care settings involving family care partners. Yet, there are expected needs and rising demands for formal caregivers to provide support within clients' homes. OBJECTIVES: Accordingly, this study aimed to understand the lived experiences of personal support workers (PSWs) regarding their communication with PLWD who live in their own homes. METHODS: The study was grounded in a hermeneutic phenomenological research approach. Data were collected as part of the Be EPIC project, an evidence-informed, person-centred communication intervention for PSWs caring for PLWD. One, in-depth semi-structured interview was conducted with each of the PSWs (N = 15). Thematic analysis was completed on the interviews. RESULTS: Three major themes emerged: (1) Challenged by dementia-related impairments; (2) Valuing communication in care; and (3) Home is a personal space. Findings revealed that PSWs experience difficulties communicating with PLWD because of dementia-related impairments, despite PSWs recognizing the importance of communication when they provide optimal care in the homes of PLWD. This suggests that PSWs view communication as a crucial component of quality care but do not possess the skills necessary to ensure effective interactions. Findings also demonstrated the importance, uniqueness and impact of the personal home space on PSWs' experiences with communication. CONCLUSION: Overall, findings indicate that PSWs acknowledge the importance of communication as an integral element of providing optimal care, but dementia-related impairments and the intimate, personal home-based care context can hinder successful communication between PSWs and PLWD. The implications of the findings are that additional and targeted education and training are required for PSWs, especially on how dementia-related impairments impact communication within the context of home care based services for PLWD.

Qualitative Insights into the Working Conditions of Personal Support Workers in Long-Term Care in the Context of a Person-Centered Communication Training Intervention.

The current study reports on qualitative insights into the working conditions of personal support workers (PSWs) in long-term care (LTC) homes within the context of a person-centered communication training intervention. PSWs (N = 39) employed at one of four LTC homes in southwestern Ontario, Canada, participated in a series of 1-hour focus groups before, during, and after a 2-week person-centered communication training program for formal caregivers of persons living with dementia (PLWD). Textual data from focus group conversations were coded and organized into themes following an interpretive description research design. Three overarching themes emerged related to the working conditions of PSWs in LTC: (1) dementia care is complex, (2) there is a lack of trained staff to provide person-centered dementia care, and (3) residents' families are not appropriately situated in residents' care circles. Four overarching themes emerged related to the impact of those working conditions: (a) PSW occupational burnout, (b) poor resident care, (c) frustrated and disengaged families, and (d) PSW job attrition. These findings offer LTC employers and administrators opportunities to ameliorate working conditions to better support person-centered dementia care. [Research in Gerontological Nursing, 14(5), 245-253.].

Hearing and Cognitive Impairments Increase the Risk of Long-term Care Admissions.

BACKGROUND AND OBJECTIVES: The objective of the study was to understand how sensory impairments, alone or in combination with cognitive impairment (CI), relate to long-term care (LTC) admissions. RESEARCH DESIGN AND METHODS: This retrospective cohort study used existing information from two interRAI assessments; the Resident Assessment Instrument for Home Care (RAI-HC) and the Minimum Data Set 2.0 (MDS 2.0), which were linked at the individual level for 371,696 unique individuals aged 65+ years. The exposure variables of interest included hearing impairment (HI), vision impairment (VI) and dual sensory impairment (DSI) ascertained at participants' most recent RAI-HC assessment. The main outcome was admission to LTC. Survival analysis, using Cox proportional hazards regression models and Kaplan-Meier curves, was used to identify risk factors associated with LTC admissions. Observations were censored if they remained in home care, died or were discharged somewhere other than to LTC. RESULTS: In this sample, 12.7% of clients were admitted to LTC, with a mean time to admission of 49.6 months (SE = 0.20). The main risk factor for LTC admission was a diagnosis of Alzheimer's dementia (HR = 1.87; CI: 1.83, 1.90). A significant interaction between HI and CI was found, whereby individuals with HI but no CI had a slightly faster time to admission (40.5 months; HR = 1.14) versus clients with both HI and CI (44.9 months; HR = 2.11). DISCUSSION AND IMPLICATIONS: Although CI increases the risk of LTC admission, HI is also important, making it is imperative to continue to screen for sensory issues among older home care clients.

Social support, social participation, & depression among caregivers and non-caregivers in Canada: a population health perspective.

Objectives: The study used data from the Canadian Longitudinal Study on Aging to investigate the relationships among social support (measured as affectionate support, emotional/informational support, positive social interaction, tangible support), social participation and depression in caregivers and non-caregivers.Method: Hierarchical multiple regression was used to investigate relationships among social support, social participation, and depression. Analyses of variance were used to examine differences in the means of social support, social participation, and depression between the two participant groups.Results: Higher levels of affectionate support, positive social interaction, and social participation were associated with lower depression scores. Social participation was a significant mediator of the relationship between caregiver status and depression. Caregivers reported significantly higher levels of affectionate support, emotional/informational support, positive social interaction, and social participation than non-caregivers. There were no between-group difference in depression scores.Discussion: The study provides support for the beneficial role of social participation in preserving caregiver mental health. Results are discussed in the context of policy and practice implications for caregivers in Canada.

Feasibility of a Dementia-Focused Person-Centered Communication Intervention for Home Care Workers.

Objectives: This study assessed the feasibility of Be EPIC, a dementia-focused, person-centered communication intervention for personal support workers (PSWs). Be EPIC's foci includes the environment, person-centered communication, client relationships, and clients' abilities, social history and preferences.Methods: Feasibility was assessed using semi-structured interviews and focus groups with PSWs. We used a phenomenological approach to assess: acceptability, implementation, practicality, demand, and limited efficacy.Results: The theme supporting the criterion of acceptability was helpful/relevant training. Themes supporting implementation included realistic simulations, interactive training, and positive learning experience at the adult-day center. The theme supporting practicality was support to attend training. Demand for Be EPIC revealed two themes: participants' personal motivation and barriers to applying newly learned knowledge and skills. The theme reflecting limited efficacy was applying newly learned knowledge and skills with home care clients. Four themes emerged that mapped onto Be EPIC's foci.Conclusions: The findings support Be EPIC's feasibility and highlight the need to address structural barriers from employers and government to ensure the delivery of person-centered dementia care.Clinical Implications: The findings highlight the need for and positive impact of person-centered communication training on home care workers, especially the value of learning by doing, reflective practice, and peer support.

Expanding current understandings of epistemic injustice and dementia: Learning from stigma theory.

The current paper addresses the nature of epistemic injustice as it may be experienced by persons with dementia. We describe how theoretical models of stigma align with the current model of epistemic injustice through a consideration of the concepts of 'stereotype', 'prejudice' and 'discrimination', shared by the two models. We draw on current understandings of dementia-related stigma to expand understandings of the epistemic injustice faced by persons with dementia. We discuss how these insights may inform the development of mechanisms to uphold the basic human right to speak, to be heard, and to be believed for persons with dementia.

The Role of Cultural and Family Values on Social Connectedness and Loneliness among Ethnic Minority Elders.

OBJECTIVES: Ethnic minority elders have high levels of social isolation and loneliness. Assumptions about the family providing enough social support exist in the literature, contradicting ethnic minority elders' reported levels of isolation and loneliness. While structural barriers influence feelings of isolation and loneliness, limited information exists about the role of cultural factors such as acculturation and family values. Accordingly, this study investigated the roles of acculturation and family values on loneliness and social isolation among ethnic minority elders. METHODS: Ethnic minority elders (N = 123) completed a questionnaire that assessed their social connectedness, measured by social network and levels of loneliness, and structural factors such as income. Additionally, cultural and family values were assessed by acculturation and the 'family as referents' dimension of familism, which refers to the belief that family members' behaviour should meet with familial expectations. RESULTS: Statistical analysis using hierarchical regression indicated that 'family as referents' and acculturation predicted loneliness, but not social network. CONCLUSIONS: This study raises the importance of considering cultural values when investigating predictors of loneliness among ethnic minority elders. CLINICAL IMPLICATIONS: Findings highlight the importance of addressing familial expectations in programs aimed at alleviating loneliness among ethnic minority elders.

Reconstruction of a Caregiver Burden Scale: Identifying Culturally Sensitive Items in Saudi Arabia.

ABSTRACTFor this study, we adapted the Montgomery Borgatta Caregiver Burden Scale, used widely in the United States, to the Saudi Arabian context. To produce an Arabic, culturally sensitive version of the scale, we conducted semi-structured interviews with 20 Saudi family caregivers. The Arabic version of the scale was tested, and participants were asked to comment on the appropriateness of items for the construct of "caregiver burden" using the repertory grid technique and laddering procedure - two constructivist methods derived from personal construct theory. From interview findings, we examined the content of the items and the caregiver burden construct itself. Our findings suggest that the use of constructivist methods to refine constructs and quantitative instruments is highly informative. This strategy is feasible even when little is known about the investigated constructs in the target culture and further elucidates our understanding of cross-cultural variations or invariance of different versions of the scale.

Staff Perspectives of Barriers to Access and Delivery of Palliative Care for Persons With Dementia in Long-Term Care.

Dementia is a syndrome that is progressive, degenerative, and terminal. The palliative care philosophy aims to maximize quality of life for the dying individual and is both beneficial for and underused with persons dying with dementia. OBJECTIVES: The purpose of this study was to investigate the experiences of long-term care staff delivering palliative care to individuals with dementia to determine how care was delivered, to learn which guidelines were used, and whether policies affected the delivery of palliative care. METHODS: Twenty-two staff participants were interviewed. Their experiences were interpreted using phenomenological methodology. RESULTS: Findings yielded 3 key themes: confusion, resource shortages, and communication difficulties. CONCLUSION: Implications for practice include clarification of terminology surrounding palliative care, education of families about dementia and palliative care, better resource management, and the need to address when palliative care best fits within the dementia process.

Combined impairments in vision, hearing and cognition are associated with greater levels of functional and communication difficulties than cognitive impairment alone: Analysis of interRAI data for home care and long-term care recipients in Ontario.

OBJECTIVES: The objective of the current study was to understand the added effects of having a sensory impairment (vision and/or hearing impairment) in combination with cognitive impairment with respect to health-related outcomes among older adults (65+ years old) receiving home care or residing in a long-term care (LTC) facility in Ontario, Canada. METHODS: Cross-sectional analyses were conducted using existing data collected with one of two interRAI assessments, one for home care (n = 291,824) and one for LTC (n = 110,578). Items in the assessments were used to identify clients with single sensory impairments (e.g., vision only [VI], hearing only [HI]), dual sensory impairment (DSI; i.e., vision and hearing) and those with cognitive impairment (CI). We defined seven mutually exclusive groups based on the presence of single or combined impairments. RESULTS: The rate of people having all three impairments (i.e., CI+DSI) was 21.3% in home care and 29.2% in LTC. Across the seven groups, individuals with all three impairments were the most likely to report loneliness, to have a reduction in social engagement, and to experience reduced independence in their activities of daily living (ADLs) and instrumental ADLs (IADLs). Communication challenges were highly prevalent in this group, at 38.0% in home care and 49.2% in LTC. In both care settings, communication difficulties were more common in the CI+DSI group versus the CI-alone group. CONCLUSIONS: The presence of combined sensory and cognitive impairments is high among older adults in these two care settings and having all three impairments is associated with higher rates of negative outcomes than the rates for those having CI alone. There is a rising imperative for all health care professionals to recognize the potential presence of hearing, vision and cognitive impairments in those for whom they provide care, to ensure that basic screening occurs and to use those results to inform care plans.

Assessment of Caregiving Constructs: Toward a Personal, Familial, Group, and Cultural Construction of Dementia Care through the Eyes of Personal Construct Psychology.

Conditions that cause cognitive impairment and behavioural and personality changes, such as Alzheimer's disease (AD) and related dementia, have global impact across cultures. However, the experience of dementia care can vary between individuals, families, formal caregivers, and social groups from various cultures. Self-reported measures, caregiving stress models, and conceptual theories have been developed to address the physical, financial, psychological, and social factors associated with the experience of dementia care. Given the cross-cultural variability in the experience of dementia care, it is important for such methodologies to take individual and cultural construct systems into account. We contend that personal and group constructs associated with dementia care should be explored in both the formal and informal caregiving contexts. Therefore, in this paper we introduce the theory of Personal Construct Psychology (PCP) with its explicit philosophy, well-elaborated theory, and derived assessment methods as a potential constructivist research approach to examine the personal, familial, group, and cultural construct systems that determine the experience of dementia caregiving. These concepts and assessment procedures are illustrated in this paper through case study examples and scenarios from the context of dementia care with a focus on family home caregivers. This paper elaborates the assessment and therapeutic approaches of personal construct theory (PCT) to further expand alternatives for support services and program interventions and to amplify policies for dementia care within and across cultures.