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.

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.

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.

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.

Toward a Mixed-Methods Research Approach to Content Analysis in The Digital Age: The Combined Content-Analysis Model and its Applications to Health Care Twitter Feeds.

BACKGROUND: Twitter's 140-character microblog posts are increasingly used to access information and facilitate discussions among health care professionals and between patients with chronic conditions and their caregivers. Recently, efforts have emerged to investigate the content of health care-related posts on Twitter. This marks a new area for researchers to investigate and apply content analysis (CA). In current infodemiology, infoveillance and digital disease detection research initiatives, quantitative and qualitative Twitter data are often combined, and there are no clear guidelines for researchers to follow when collecting and evaluating Twitter-driven content. OBJECTIVE: The aim of this study was to identify studies on health care and social media that used Twitter feeds as a primary data source and CA as an analysis technique. We evaluated the resulting 18 studies based on a narrative review of previous methodological studies and textbooks to determine the criteria and main features of quantitative and qualitative CA. We then used the key features of CA and mixed-methods research designs to propose the combined content-analysis (CCA) model as a solid research framework for designing, conducting, and evaluating investigations of Twitter-driven content. METHODS: We conducted a PubMed search to collect studies published between 2010 and 2014 that used CA to analyze health care-related tweets. The PubMed search and reference list checks of selected papers identified 21 papers. We excluded 3 papers and further analyzed 18. RESULTS: Results suggest that the methods used in these studies were not purely quantitative or qualitative, and the mixed-methods design was not explicitly chosen for data collection and analysis. A solid research framework is needed for researchers who intend to analyze Twitter data through the use of CA. CONCLUSIONS: We propose the CCA model as a useful framework that provides a straightforward approach to guide Twitter-driven studies and that adds rigor to health care social media investigations. We provide suggestions for the use of the CCA model in elder care-related contexts.

Language-based communication strategies that support person-centered communication with persons with dementia.

BACKGROUND: There are many recommended language-based strategies for effective communication with persons with dementia. What is unknown is whether effective language-based strategies are also person centered. Accordingly, the objective of this study was to examine whether language-based strategies for effective communication with persons with dementia overlapped with the following indicators of person-centered communication: recognition, negotiation, facilitation, and validation. METHODS: Conversations (N = 46) between staff-resident dyads were audio-recorded during routine care tasks over 12 weeks. Staff utterances were coded twice, using language-based and person-centered categories. There were 21 language-based categories and 4 person-centered categories. RESULTS: There were 5,800 utterances transcribed: 2,409 without indicators, 1,699 coded as language or person centered, and 1,692 overlapping utterances. For recognition, 26% of utterances were greetings, 21% were affirmations, 13% were questions (yes/no and open-ended), and 15% involved rephrasing. Questions (yes/no, choice, and open-ended) comprised 74% of utterances that were coded as negotiation. A similar pattern was observed for utterances coded as facilitation where 51% of utterances coded as facilitation were yes/no questions, open-ended questions, and choice questions. However, 21% of facilitative utterances were affirmations and 13% involved rephrasing. Finally, 89% of utterances coded as validation were affirmations. CONCLUSIONS: The findings identify specific language-based strategies that support person-centered communication. However, between 1 and 4, out of a possible 21 language-based strategies, overlapped with at least 10% of utterances coded as each person-centered indicator. This finding suggests that staff need training to use more diverse language strategies that support personhood of residents with dementia.

Receiving while giving: the differential roles of receiving help and satisfaction with help on caregiver rewards among spouses and adult-children.

OBJECTIVE: There is a growing body of literature on the rewards associated with caregiving and the utility of these rewards on buffering the negative consequences of caring for a family member with Alzheimer's disease. Many psychoeducational interventions aim to empower caregivers to seek and obtain help from their social support network, with the expectation that help will enable them to cope more effectively. METHODS: This study investigated the impact of changes in help and changes in satisfaction with help on positive aspects of caregiving for both spouse (N = 254) and adult-child (N = 208) caregivers who attended a psychoeducational intervention. RESULTS: Analyses using structural equation modeling revealed that increases in amount of help and satisfaction with help were significantly linked with increases in caregiver rewards for adult-children. However, only increases in satisfaction with help were significantly related to increases in caregiver rewards for spouses. CONCLUSIONS: These group differences suggest that the quality of support is critical for spouses, whereas both quality and receiving extra help are useful for adult-child caregivers. These findings are discussed in terms of the importance of understanding the differential needs of spouse and adult-child caregivers in practice.

Missed opportunities for person-centered communication: implications for staff-resident interactions in long-term care.

BACKGROUND: Social interactions in long-term care settings between staff and residents with dementia have been characterized as task-oriented, patronizing, and/or overly directive. Long-term care settings can be contexts that emphasize dependency and threaten the personal identity of older residents. Yet, leaders in the long-term care sector have acknowledged recently that dementia care must move beyond the completion of caregiving tasks and adopt a person-centered approach. This approach involves caregivers incorporating a resident's life history and preferences during interactions. The objectives of this study were to examine the extent to which staff-resident communication is person-centered and the extent to which staff miss opportunities to communicate with residents in a person-centered manner. METHODS: Conversations (N = 46) of 13 staff-resident dyads were audio-recorded during routine care tasks over 12 weeks. Staff utterances within these conversations were coded for person-centered communication and missed opportunities where person-centered communication could have been used. RESULTS: Findings revealed a common communication sequence where utterances coded as person-centered were followed by utterances coded as missed opportunities. This sequence suggests that the positive impact of person-centered communication may be undermined when such communication is followed by missed opportunities. Data also revealed that missed opportunities highlight the need for staff training. CONCLUSION: The findings underscore the importance of sustaining person-centered communication while completing routine care tasks.

Matched and mismatched appraisals of the effectiveness of communication strategies by family caregivers of persons with Alzheimer's disease.

BACKGROUND: Communication problems stemming from Alzheimer's disease (AD) often result in misunderstandings that can be linked with problem behaviours and increased caregiver stress. Moreover, these communication breakdowns also can result either from caregivers' use of ineffective communication strategies, which paradoxically are perceived as helpful, or can occur as a result of not using effective communication strategies that are perceived as unhelpful. AIMS: The two primary aims were to determine the effectiveness of strategies used to resolve communication breakdowns and to examine whether caregivers' ratings of strategy effectiveness were consistent with evidence from video-recorded conversations and with effective communication strategies documented in the literature. METHODS & PROCEDURES: Twenty-eight mealtime conversations were recorded using a sample of 15 dyads consisting of individuals with early, middle and late clinical-stage AD and their family caregivers. Conversations were analysed using the trouble-source repair paradigm to identify the communication strategies used by caregivers to resolve breakdowns. Family caregivers also rated the helpfulness of communication strategies used to resolve breakdowns. Analyses were conducted to assess the overlap or match between the use and appraisals of the helpfulness of communication strategies. OUTCOMES & RESULTS: Matched and mismatched appraisals of communication strategies varied across stages of AD. Matched appraisals by caregivers of persons with early-stage AD were observed for 68% of 22 communication strategies, whereas caregivers of persons with middle- and late-stage AD had matched appraisals for 45% and 55% of the strategies, respectively. Moreover, caregivers of persons with early-stage AD had matched appraisals over and above making matched appraisals by chance alone, compared with caregivers of persons in middle- and late-stage AD. CONCLUSIONS & IMPLICATIONS: Mismatches illustrate the need for communication education and training, particularly to establish empirically derived evidence-based communication strategies over the clinical course of AD.

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.

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.

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.

Impact of a psychoeducational program on three types of caregiver burden among spouses.

PURPOSE: The purpose of this study was to investigate the extent to which a psychoeducational intervention called "Powerful Tools for Caregivers" (PTC) influences burden of spouse caregivers. Specifically, this study examined whether spouse caregivers who attended PTC exhibited reductions in stress burden, relationship burden, and objective burden compared to a comparison group. DESIGN AND METHODS: The 6 -week intervention used a self-efficacy framework to train caregivers to focus on self-care, communicate effectively, and manage emotions. This quasi-experimental study included 115 participants from the PTC group and 95 participants from a comparison group. Assessments were completed before and after the intervention for the PTC group and within a 6 -week time period for the comparison group. RESULTS: Analyses using structural equation modeling showed that participants in the PTC group reported significantly lower levels of stress and objective burden than the comparison group. There were no group differences in relationship burden. IMPLICATIONS: The findings indicate that PTC can be an effective resource for reducing psychological distress and objective burden among spouses caring for disabled partners.

Relationships between appraisals of caregiver communication strategies and burden among spouses and adult children.

BACKGROUND: The purpose of this study was to investigate the impact of caregivers' appraisals of the effectiveness of their own communication strategies on caregiver burden when caring for family members with Alzheimer's disease (AD). METHODS: Family caregivers (N = 84) of participants with AD completed questionnaires appraising communication strategies, problem behaviors, and levels of three types of burden. RESULTS: Hierarchical linear regression models revealed that effective strategies and kinship status were significantly linked with stress burden, whereas effective strategies and problem behaviors were significantly related to relationship burden. Cognitive status of participants with AD significantly predicted objective burden. Caregivers who rated effective strategies as helpful were more likely to experience lower levels of stress and relationship burden. CONCLUSIONS: Findings provide preliminary support for understanding mechanisms by which the appraisals of communication strategies influence caregiver burden and justify testing empirically derived communication interventions.

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.].

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.

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.