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.

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.

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.

Education and Social Support as Key Factors in Osteoarthritis Management Programs: A Scoping Review.

Systematic reviews of self-management programs for osteoarthritis suggest minimal evidence of benefit and indicate substantial heterogeneity in interventions. The purpose of this scoping review was to describe the nature of self-management interventions provided to patients with osteoarthritis focusing on the inclusion and type of education and social support components. We searched PsycINFO, EMBASE, MEDLINE, and Cochrane Library databases from 1990 to 2016 to identify studies addressing community-based management strategies for osteoarthritis that included aspects of disease-specific education and ongoing social support. Results are presented as a narrative synthesis to facilitate integration of diverse evidence. Data were extracted from 23 studies that met our inclusion and exclusion criteria, describing complex, multicomponent interventions for osteoarthritis. All studies included education components, and 18 of these were osteoarthritis-specific. Social support was most often offered through peers and health care professionals, but also through exercise trainers/instructors and researchers, and lasted between 5 and 52 weeks. We charted positive social interaction offered by peers in group settings and emotional/informational support offered by health care professionals. Overall, descriptions of self-management provided limited documentation of the rationale or content of the programs. This suggests that more precise definitions of the theoretical underpinnings, components, and mechanisms would be useful for greater insight into best practices for osteoarthritis self-management programs.

Patient perspectives on improving osteoarthritis management in urban and rural communities.

INTRODUCTION: Although there is no cure for osteoarthritis (OA), there are lifestyle modifications that can mitigate symptoms such as pain, and improve management of the disease. This information is not always translated to community-dwelling seniors. Individuals in rural areas often face additional challenges due to geographic isolation and decreased access to community services. METHODS: We used qualitative research methodology (hermeneutic phenomenology) to better understand the lived experiences of urban and rural community-dwelling seniors diagnosed with OA. We explored their sources of information about OA, how they manage their OA pain, and how OA management could be improved in the community. Purposeful sampling was used to recruit 20 information-rich participants (11 urban, 9 rural) in Ontario, Canada. All participants were aged >65 and diagnosed with OA. Semi-structured interviews were conducted, audio recorded, and transcribed verbatim. NVivo 11 Pro qualitative software was used to code transcripts. RESULTS: Thematic analysis revealed 9 key themes where 8 were common to urban and rural participants, and 1 was unique to rural participants. Most significant among the common themes was the description of the social network as a source of OA information, the trial-and-error approach used for OA management, and the individual contextualization of OA management. Our results suggest that there are several common experiences among urban- and rural-dwelling seniors living with OA, including the desire for support over time, but also a unique experience to rural-dwelling seniors, namely lack of access to local care. CONCLUSION: These findings can be used to improve translation of OA information in both urban and rural communities in Canada, highlighting that common strategies may be effective in different contexts for this disease.

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.

Cultural Factors Influencing Osteoarthritis Care in Asian Communities: A Review of the Evidence.

With the prevalence of osteoarthritis (OA) increasing internationally, there is a need to study the impact of this disease on culturally diverse populations. Individuals of Asian descent make up more than 60% of the world population, yet comprehensive information on the cultural factors that impact OA care is not available. Scoping review methodology using directed content analysis was employed to identify and analyze existing research on OA care for Asians. A categorization matrix was developed using the six care areas from the OA clinical practice guidelines along with an additional three non-clinical areas (cross-cultural adaptation of clinical tools; psychological well-being; family systems and informal care) identified in an initial scan resulting in a total of nine OA care areas to guide initial coding. A full scoping review was conducted across five databases resulting in 656 abstracts screened. All text was coded using the categorization matrix and resulting subthemes were identified. A total of 74 articles were analyzed with 23 subthemes identified across the nine categories. Four new perspectives emerged to support OA care for Asian populations: (1) the importance of family and peer assistance, (2) the importance of culturally specific activities, (3) distrust in western medicine, and (4) impact of positive coping mechanisms on health appraisals. While Asians are more susceptible to knee and hand OA because of their cultural lifestyle factors (e.g. squatting for chores, hygiene and religious activities), and traditional beliefs on OA management (e.g. traditional diet, topical oils, physical therapy), many do not present themselves for conventional treatments (e.g. surgery) until all traditional treatments are exhausted. The results suggest that cultural factors influence the uptake of OA management practices among Asians. Greater awareness of these cultural factors may improve diagnosis, treatment, and management of OA among Asian patients.

Evaluating the design and reporting of pragmatic trials in osteoarthritis research.

Objectives: Among the challenges in health research is translating interventions from controlled experimental settings to clinical and community settings where chronic disease is managed daily. Pragmatic trials offer a method for testing interventions in real-world settings but are seldom used in OA research. The aim of this study was to evaluate the literature on pragmatic trials in OA research up to August 2016 in order to identify strengths and weaknesses in the design and reporting of these trials. Methods: We used established guidelines to assess the degree to which 61 OA studies complied with pragmatic trial design and reporting. We assessed design according to the pragmatic-explanatory continuum indicator summary and reporting according to the pragmatic trials extension of the CONsolidated Standards of Reporting Trials guidelines. Results: None of the pragmatic trials met all 11 criteria evaluated and most of the trials met between 5 and 8 of the criteria. Criteria most often unmet pertained to practitioner expertise (by requiring specialists) and criteria most often met pertained to primary outcome analysis (by using intention-to-treat analysis). Conclusion: Our results suggest a lack of highly pragmatic trials in OA research. We identify this as a point of opportunity to improve research translation, since optimizing the design and reporting of pragmatic trials can facilitate implementation of evidence-based interventions for OA care.

Evaluating dementia home care practices: The reification of care norms.

This critical ethnographic study examined how power relations shape the nature and enactment of caregivers' evaluation of home-based dementia care practices. As the home care sector continues to evolve and prepare itself as a key element in caring for people living with dementia and their families, this study grounds our understanding of how dementia home care practices are enacted and evaluated, particularly at the interface of formal and familial caregiving. The critical finding from our data is that not all evaluations of care practices were considered equally meaningful or relevant, and, moreover, their significance depended on whether the evaluation was made by someone in a position of power. Renewed awareness of and attention to power relations, such as class and gender, are implicated in the evaluation of care practices. Consequently, challenging how power is enacted in ways that (re)produces and reifies care norms is vital in order to foster equitable and supportive partnerships in home-based dementia care.

Improving the diagnosis and treatment of osteoporosis using a senior-friendly peer-led community education and mentoring model: a randomized controlled trial.

BACKGROUND: This randomized controlled trial (RCT) evaluated a 6-month peer-led community education and mentorship program to improve the diagnosis and management of osteoporosis. METHODS: Ten seniors (74-90 years of age) were trained to become peer educators and mentors and deliver the intervention. In the subsequent RCT, 105 seniors (mean age =80.5±6.9; 89% female) were randomly assigned to the peer-led education and mentorship program (n=53) or control group (n=52). Knowledge was assessed at baseline and 6 months. Success was defined as discussing osteoporosis risk with their family physician, obtaining a bone mineral density assessment, and returning to review their risk profile and receive advice and/or treatment. RESULTS: Knowledge of osteoporosis did not change significantly. There was no difference in knowledge change between the two groups (mean difference =1.3, 95% confidence interval [CI] of difference -0.76 to 3.36). More participants in the intervention group achieved a successful outcome (odds ratio 0.16, 95% CI 0.06-0.42, P<0.001). CONCLUSION: Peer-led education and mentorship can promote positive health behavior in seniors. This model was effective for improving osteoporosis risk assessment, diagnosis, and treatment in a community setting.

Hip Fracture Types in Canadian Men and Women Change Differently with Age: A Population-Level Analysis.

BACKGROUND: We have previously reported a gender difference in the occurrence of hip fracture type with age in our local population. In the current report, we have explored this phenomenon in a Canadian population using five years of data from a national administrative database. We have compared community-dwelling and institutionalized individuals to determine if frailty is important and has a differential effect on the type of hip fracture experienced. METHODS: Hospitalization records from 2005 to 2009, in which the most responsible diagnosis, that is the diagnosis causing the admission to hospital, was a hip fracture, were obtained from the Discharge Abstract Database of the Canadian Institute for Health Information. Hip fracture type was identified using the Canadian Classification of Health Interventions and the International Classification of Diseases 10th Revision, Canada (ICD-10-CA). Hip fracture proportions were calculated for the study period and stratified by age group and sex. RESULTS: The relative proportion of intertrochanteric fractures in women rose from 35% in the youngest group (55-59 years) to 51% in the oldest group (84+ years; P < 0.0001). In men, the proportions remain relatively stable (47% and 44%, respectively). Community and institutionalized patients showed the same pattern. CONCLUSIONS: The change in the proportion of the two hip fracture types that occur in women but not men may point to differences in the etiology and consequently the approaches to prevention for the two fracture types. Level of frailty did not seem to be important.

Caring for a Person With Amnestic Mild Cognitive Impairment.

While much of the literature on caregiver burden has focused on caregiving for people living with Alzheimer's disease (AD) there is little information on the experience of caring for a loved one living with amnestic Mild Cognitive Impairment (aMCI), the group most likely to convert to AD. A hermeneutic phenomenological approach was used to understand the organizing principles that give experiences of being form and meaning in the lifeworld. Study findings highlight the precarious nature of caregiver role acquisition and the heterogeneity that is present among informal care providers. Specifically, the findings suggest that the wearing of multiple situational masks is required by the carer to cope with accumulated progressive losses suffered as they continually adjust to their new and evolving carer identity. Support groups specific to the carers of those living with aMCI are needed in an effort to remove these masks and to validate this unique caregiving experience.

Purchasing and Using Personal Emergency Response Systems (PERS): how decisions are made by community-dwelling seniors in Canada.

BACKGROUND: As the demographic of older people continues to grow, health services that support independence among community-dwelling seniors have become increasingly important. Personal Emergency Response Systems (PERS) are medical alert systems, designed to serve as a safety net for seniors living alone. Health care professionals often recommend that seniors in danger of falls or other medical emergencies obtain a PERS. The purpose of the study was to investigate the experience of seniors living with and using a PERS in their daily lives, using a qualitative grounded theory approach. METHODS: Five focus groups and 10 semi-structured interviews, with a total of 30 participants, were completed using a grounded theory approach. All participants were PERS subscribers over the age of 80, living alone in a naturally occurring retirement community (NORC) with high health service utilization in a major urban centre in Ontario. Constant comparative analysis was used to develop themes and ultimately a model of why and how seniors obtain and use the PERS. RESULTS: Two core themes, unpredictability and decision-making around PERS activation, emerged as major features of the theoretical model. Being able to get help and the psychological value of PERS informed the context of living with a PERS. CONCLUSIONS: A number of theoretical conclusions related to unpredictability and the decision-making process around activating PERS were generated.

An exploration of risk for recurrent falls in two geriatric care settings.

BACKGROUND: Fall events were examined in two distinct geriatric populations to identify factors associated with repeat fallers, and to examine whether patients who use gait aids, specifically a walker, were more likely to experience repeat falls. Each unit already had a generic program for falls prevention in place. METHODS: Secondary data analysis was conducted on information collected during the pilot testing of a new quality assurance Incident Reporting Tool between October 2006 and September 2008. The study settings included an in-patient geriatric rehabilitation unit (GRU) and a long stay veterans' unit (LSVU) in a rehabilitation and long-stay hospital in Ontario. Participants were two hundred and twenty three individuals, aged 65 years or older on these two units, who experienced one or more fall incidents during the study period. RESULTS: Logistic regression analyses showed that on the GRU age was significantly associated with repeat falls. On the LSVU first falls in the morning or late evening were associated with repeat falling. Walker as a gait aid listed at time of first fall was not associated with repeat falls. CONCLUSIONS: This study suggests that different intervention may be necessary in different geriatric settings to identify, for secondary prevention, certain individuals for which the generic programs prove inadequate. Information collection with a specific focus on the issue of repeat falls may be necessary for greater insight.

Managing agitation using nonpharmacological interventions for seniors with dementia.

Approximately 36 million people have Alzheimer's disease worldwide, and many experience behavioral issues such as agitation. The purpose of this study was to investigate the perceptions of long-term care (LTC) staff regarding the current use of nonpharmacological interventions (NPIs) for reducing agitation in seniors with dementia and to identify facilitators and barriers that guide NPI implementation. Qualitative methods were used to gather data from interviews and focus groups. A total of 44 staff from 5 LTC facilities participated. Findings showed that both medications and NPIs are used for the management of agitation. The use of NPIs was facilitated by consistency in staffing, and the ability of all the staff members to implement them. Common barriers to NPI use included the perceived lack of time, low staff-to-resident ratios, and the unpredictable and short-lasting effectiveness of NPIs. This study offers insight into perceived factors that influence implementation of NPIs and the perceived effectiveness of NPIs.

Making care decisions in home-based dementia care: why context matters.

The hours of unpaid elder care by family members are projected to triple by 2038. Because living with dementia can inhibit decision-making abilities, family members are often besought to assist in this process. In this ethnographic study, relationships within home-based dementia care were critically examined through face-to-face interviews and participant observations with clients, family caregivers, and home care providers (n = 51). The findings revealed how the formalized home care system contextually imposes decisions, and revealed three themes: (1) accommodating clinically defined competence/incompetence, (2) making untimely decisions, and (3) reinforcing exclusion in decision making. These themes shed light on how cultural values (competency), beliefs (immutability of the system), and practices (timing of decisions) of the home care system are ultimately deterministic in decision making for persons with dementia and caregivers. Additional attention to the collaborative and inclusive practices of all family members in dementia home care is imperative in order to optimize health.

Using photovoice methodology to investigate facilitators and barriers to food acquisition and preparation by rural older women.

This research investigates facilitators and barriers that rural women aged 65 to 75 years in Southwestern Ontario experience in acquiring and preparing food through the use of photovoice methodology. Eighteen participants in five rural communities used a camera and log book to document their experiences and perspectives relating to the acquisition and preparation of food, and they each participated in two focus groups to engage in critical dialogue and knowledge sharing regarding the meaning and significance of the pictures they took. Analysis of photographs, log books, and focus group data revealed 13 themes, 3 emerging as facilitators to food acquisition and preparation (availability of food, social networks and values, personal values and resources), 5 as barriers (adjusting to changing family size, winter weather, food labeling issues, grocery shopper resources, limited physical capacity), and 5 as both facilitators and barriers (economics, valuing a healthy diet, technology changes, transportation, location and nature of grocery stores). Data also revealed rurality, age, and gender as foundationally influential factors affecting rural older women's food acquisition and preparation.

Underrepresentation of individuals 80 years of age and older in chronic disease clinical practice guidelines.

OBJECTIVE: To determine whether Canadian clinical practice guidelines (CPGs), and the evidence used to create CPGs, include individuals 80 years of age and older. DESIGN: Descriptive analysis of 14 CPGs for 5 dominant chronic conditions (diabetes, hypertension, heart failure, osteoporosis, stroke) and descriptive analysis of all research-based references with human participants in the 14 guidelines. MAIN OUTCOME MEASURES: To identify recommendations for individuals 65 years of age and older or 80 years of age and older and for those with multiple chronic conditions. RESULTS: Although 12 of 14 guidelines provided specific recommendations for individuals 65 years of age and older, only 5 provided recommendations for frail older individuals (≥ 80 years). A total of 2559 studies were used as evidence to support the recommendations in the 14 CPGs; 2272 studies provided the mean age of participants, of which only 31 (1.4%) reported a mean age of 80 years of age and older. CONCLUSION: There is very low representation of individuals in advanced old age in CPGs and in the studies upon which these guidelines are based, calling into question the applicability of current chronic disease CPGs to older individuals. The variety of medical and functional issues occurring in the elderly raises the concern of whether or not evidence-based disease-specific CPGs are appropriate for such a diverse population.

Gait variability is associated with frailty in community-dwelling older adults.

BACKGROUND: The relationship between frailty and gait characteristics other than velocity has received little attention. Gait variability quantifies the automaticity of gait with greater variability usually indicating an irregular and unstable gait. High gait variability reflects the loss of gait regulation and predicts mobility decline and falls, which may reveal systemic vulnerability. Thus, we hypothesize that high gait variability may be associated with frailty phenotype. METHODS: Cross-sectional study including 100 community-dwelling women and men 75 years and older. Frailty was defined using validated phenotypic criteria and two additional frailty indexes that omit gait velocity criterion were used to verify associations between frailty and quantitative gait parameters. Gait was assessed under usual and fast pace using an electronic walkway. RESULTS: Frailty phenotype was identified in 20% of the participants and at least one component of frailty was present in 75%. Linear regression models were generated to explore the associations between frailty and gait variability. In the univariate regression model, frailty was associated with higher variability for all the gait parameters of interest. After adjustments, stride time variability under fast gait condition was the most prominent parameter consistently associated with frailty. This association remained significant in two additional frailty indexes that omit gait velocity criterion. CONCLUSION: Frailty is associated with low performance in several quantitative gait parameters beyond velocity of which the most prominent is high stride time variability. This finding may help to understand the high risk of falls and mobility decline in people with frailty.

Hip fractures in long-term care: is the excess explained by the age and gender distribution of the residents?

Introduction. This study compares hip fracture rates in Long Term Care (LTC) residents with those in the community to determine if their high rate of fracturing reflects the extreme age and predominantly female nature of that population. Methods. Hospital discharge data in London Ontario (population 350,000) and Statistics Canada data were used to correct the hip fracture rate in the LTC setting for age and gender. Results. The risk of hip fracture is 1.8 times greater in LTC than in the community for people of similar age and gender. The rate in women is 1.5 times higher whereas in men it is 4.3 times higher. In the oldest residents, the risk in men exceeds that of women in LTC. Conclusion. The high hip fracture rate in LTC is not just a reflection of the age and predominantly female nature of this population. The oldest men in LTC are a particularly high risk group, deserving more attention.