Cholinesterase Inhibitor Utilization: The Impact of Provincial Drug Policy on Discontinuation.

BACKGROUND: In October 2007, British Columbia started to cover the cost of cholinesterase inhibitors (ChEIs)-donepezil, galantamine, and rivastigmine-for patients with mild to moderate dementia and prominent Alzheimer's disease. OBJECTIVES: To examine the impact of this policy on persistence with ChEIs. METHODS: A population-based cohort study was conducted using British Columbia administrative health data. We examined 45,537 new ChEI users aged 40 years and older between 2001 and 2012; 20,360 (45%) started the treatment after the coverage policy was launched. Patients were followed until treatment discontinuation, defined as a ChEI-free gap of 90 days, death, or December 2013. Persistence on ChEIs was estimated using survival analysis and competing risk approach. Hazards of discontinuation were compared using competing risk Cox regression with propensity adjustment. RESULTS: Patients who started ChEI therapy after the introduction of the coverage policy had a significantly longer persistence. Median ChEI persistence until discontinuation or death was 9.37 months (95% confidence interval [CI] 9.0-39.7) and 17.6 months (95% CI 16.9-18.3) in patients who started therapy before and after the new policy, respectively. The propensity-adjusted hazard ratio for discontinuing therapy was 0.91 (95% CI 0.88-0.94). Similar patterns were observed for persistence with the first ChEI (propensity-adjusted hazard ratio of 0.94; 95% CI 0.91-0.98). In rivastigmine users, the hazard ratio was insignificant (0.98; 95% CI 0.92-1.02). CONCLUSIONS: The British Columbia ChEI coverage policy was associated with significantly prolonged persistence with donepezil and galantamine, but not rivastigmine.

The conceptualization and measurement of individualized care.

Individualized nursing care, a form of person-centered care delivery, is accepted as best practice, yet its implementation into actual care is far from complete. Appropriate measures of this elusive concept are needed to better understand barriers to implementation. This study explored and tested the convergent validity and the reliability of 2 individualized nursing care measures. A cross-sectional survey design was used to collect data using the Individualized Care Scale and the Individualized Care Instrument (ICI) from a sample of nurses (n = 263, response rate 71%) working in older peoples' care settings in Finland, and the data were analyzed statistically. Cronbach's alpha coefficients for the ICI scales (.63-.80) and ICS-A and B subscales (both α = .91) demonstrated only moderate correlation between the 2 instruments (r = -.39 to .50) and possibly the complexity of measuring "individualized care." The study acknowledges the latent influence of culture and care approach to the conceptualization of individuality. It concludes that the concept may best be measured at this point with the use of other factors in addition to instruments to capture its multiple domains.

The Older, the Happier?: A Cross-Sectional Study on the "Paradox of Aging" in China.

The "paradox of aging" refers to the phenomenon that even though people's physical health and functions may decline when they enter later adulthood, their happiness does not necessarily. Previous studies have shown that older adults' better emotional regulation skills may contribute to the maintenance of their happiness. This study aims to examine the relationship between age, health, and happiness, and the moderating role of emotional stability. We adopted a nationally representative sample (n = 10,968) from the Chinese General Social Survey (CGSS) and performed weight-adjusted regression models with interaction terms. There is generally an S-shaped age-happiness relationship with significant urban-rural differences. Emotional stability buffers the negative association between health and happiness, and this moderating effect was stronger among older than younger adults, especially in rural China. This study calls for special attention paid to the oldest-old population in rural China and older adults' emotional regulation skills.

An evidence-based policy prescription for an aging population.

In this paper, the authors provide a policy prescription for Canada's aging population. They question the appropriateness of predictions about the lack of sustainability of our healthcare system. The authors note that aging per se will only have a modest impact on future healthcare costs, and that other factors such as increased medical interventions, changes in technology and increases in overall service use will be the main cost drivers. They argue that, to increase value for money, government should validate, as a priority, integrated systems of care delivery for older adults and recognize such systems as a major component of Canada's healthcare system, along with hospitals, primary care and public/population health. They also note a range of mechanisms to enhance such systems going forward. The authors present data and policy commentary on the following topics: ageism, healthy communities, prevention, unpaid caregivers and integrated systems of care delivery.

Filial caregivers; diasporic Chinese compared with homeland and hostland caregivers.

This paper examines the distinctiveness and similarities of diasporic Chinese Canadian caregivers to older adults compared with Hong Kong Chinese and Caucasian Canadian caregivers. Particular interest lies in whether filial responsibility, actual caregiving behaviours, health and a variety of structural characteristics cluster in ways that suggest these three groups of filial caregivers are distinctive. Data were collected using face-to-face interviews. The findings suggest that the caregivers participating in this study cluster into types that roughly approximate their original cultural groupings. Interestingly, however, the diasporic or immigrant Chinese appear more similar to homeland (Hong Kong) than hostland (in this instance Caucasian) Canadian caregivers - all diasporic Chinese were originally, or their ancestors were, from Hong Kong. Chinese Canadians are not necessarily in the middle in terms of caregiving behaviours, but rather show variability depending on the behaviour examined. In addition, these findings confirm past research that Western culture does not have clear and explicit norms of filial responsibility to the same extent as does Chinese culture.

Who cares and how much? The imputed economic contribution to the Canadian healthcare system of middle-aged and older unpaid caregivers providing care to the elderly.

Canadians provide significant amounts of unpaid care to elderly family members and friends with long-term health problems. While some information is available on the nature of the tasks unpaid caregivers perform, and the amounts of time they spend on these tasks, the contribution of unpaid caregivers is often hidden. (It is recognized that some caregiving may be for short periods of time or may entail matters better described as "help" or "assistance," such as providing transportation. However, we use caregiving to cover the full range of unpaid care provided from some basic help to personal care.) Aggregate estimates of the market costs to replace the unpaid care provided are important to governments for policy development as they provide a means to situate the contributions of unpaid caregivers within Canada's healthcare system. The purpose of this study was to obtain an assessment of the imputed costs of replacing the unpaid care provided by Canadians to the elderly. (Imputed costs is used to refer to costs that would be incurred if the care provided by an unpaid caregiver was, instead, provided by a paid caregiver, on a direct hour-for-hour substitution basis.) The economic value of unpaid care as understood in this study is defined as the cost to replace the services provided by unpaid caregivers at rates for paid care providers.

Accuracy of Caregiver Proxy Reports of Home Care Service Use.

Although much of the research on service use by older adults with dementia relies on proxy reports by informal caregivers, little research assesses the accuracy of these reports, and that which does exist, does not focus on home care services. This brief report compares proxy reports by family caregivers to those with dementia with provincial Ministry of Health records collected for payment and monitoring. The four home care services examined include home nursing care, adult day care, home support, and respite care. Data come from a province-wide study of caregivers in British Columbia, Canada. Caregiver reports are largely consistent with Ministry records, ranging from 81.0% agreement for home support to 96.6% for respite care. Spouses living with the care recipient (the vast majority of the sample) are the most accurate. Others, whether living with the care recipient or not, have only a 50-50 chance of being correct.

Caregiver Experiences Across Three Neurodegenerative Diseases: Alzheimer's, Parkinson's, and Parkinson's With Dementia.

OBJECTIVE: This article asks whether distinct caregiver experiences of Alzheimer's disease (AD), Parkinson's disease (PD), and Parkinson's disease with dementia (PDD) spouses are accounted for by disease diagnosis or by a unique combination of symptoms, demands, support, and quality of life (QOL) cross disease groups. METHOD: One hundred five live-in spouse caregivers (71.4 ± 7 years) were surveyed for persons with AD (39%), PD (41%), and PDD (20%). A hierarchical cluster analysis organized caregivers across disease diagnosis into clusters with similar symptom presentation, care demands, support, and QoL. RESULTS: Four clusters cut across disease diagnosis. "Succeeding" cared for mild symptoms and had emotional support. "Coping" managed moderate stressors and utilized formal supports. "Getting by with support" and "Struggling" had the greatest stressors; available emotional support influenced whether burden/depression was moderate or severe. The results remain the same when diagnostic category is added to the cluster analysis. DISCUSSION: This study supports going beyond disease diagnosis when examining caregiver experiences.

Caregiving: predicting at-risk status.

Despite the focus on burden of caregiving in gerontological research, studies have shown that few caregivers are overly burdened. This article compares predictors of role-specific burden and two quality-of-life measures among caregivers experiencing heavy care demands to assess role-impact on each. The study included 92 community-based caregivers on Vancouver Island. Predictors included primary stressors, personal resources, and socio-demographic factors. Demands of caregiving emerged as the most significant correlate of role-specific burden and was important for overall well-being indirectly, through burden. Resilience was an important correlate of all three outcomes. Over the year of the study, caregivers improved in all three outcomes examined, but we were unsuccessful in predicting that change. Findings suggest caregivers can both be burdened and simultaneously experience good or high well-being, pointing to the importance of not generalizing from studies restricted only to caregiver burden in making recommendations about these people's overall lives.

Promoting health and innovative health promotion practice through a community arts centre.

The salubrious effects of participation in and exposure to the arts are well documented. This paper describes the development of a unique arts centre established in a disadvantaged urban school setting as part of a larger community-based health promotion research project. The discussion highlights how community-based arts programming may impact health not only through positive effects on "upstream" non-medical health determinants, particularly aspects of social support, but also through its ability to facilitate the more traditional health-promotion initiatives of the larger parent project. Also discussed is this centre's potential to act as a catalyst to achieve the overarching project goal of enhanced community health by building constitutive capacity around positive aspects of the community, rather than focusing on capacity only as an instrumental resource to solve social or health problems. Greater incorporation of the arts within health-promotion projects offers potential to enhance both health promotion practice and outcomes.

Providing care and support for an aging population: briefing notes on key policy issues.

The Canadian Initiative on Frailty and Aging was initiated with the overall goals of furthering understanding of the causes, trajectory and implications of frailty and improving the lives of older persons at risk of frailty. This paper presents the current research on key policy issues related to the frail elderly.

Relationship and stage of dementia differences in caregiver perspectives on the meaning of activity.

Caregivers of persons living with dementia (PWD) taking cholinesterase inhibitors, who care 3 + h over three days/week, were interviewed. This study uses thematic content analysis to compare responses to the open-ended question " What do you believe getting involved in activities outside the home means for someone with dementia?" in spouse ( n = 613) and adult-children ( n = 260) caregivers, and across mild ( n = 314) and moderate-severe stages ( n = 280). For adult-children caregivers, activity participation promotes independence in their parents. Spouses describe activity in the context of their relationship with the PWD, and the experience is framed around their continued social roles as a couple. Mild-stage caregivers report the difficulty and negative outcomes (e.g. frustration, stigma) of engaging in activity, while moderate-severe caregivers discuss activity as preserving abilities in PWD and providing connection to cohort. This may indicate areas for improved activity provision and support for spouse (i.e. emotional) and adult-children (i.e. resources) caregivers across dementia stages.

Family Involvement in Nursing Homes: Are Family Caregivers Getting What They Want?

The provision of person-centered care for nursing home residents with dementia suggests the need for family caregiver involvement. In this article, we argue that optimal family involvement differs by family caregiver and therefore depends on the degree to which family caregivers consider their own involvement to be important. In this Canadian study, we compare the importance that 135 family caregivers of residents with dementia place on 20 kinds of involvement with the degree to which they perceive opportunities for involvement. Family Involvement Congruence Scores are calculated in three ways: those for whom involvement is important, those for whom involvement is not important, and an overall congruence score. Congruence scores varied by involvement type. These scores show promise for use in future research on family caregiver involvement and as tools for use by facilities as they endeavor to meet family caregiver expectations for involvement.

Defining community boundaries in health promotion research.

PURPOSE: A means for integrating subjective experience in the operationalization of community boundaries is described and examined, and a community typology incorporating both psychosocial and structural resources is developed and applied. DESIGN: Small-area sense of belonging was used to delineate broader community boundaries, which were compared with administrative boundaries. Community differences on participation and health were analyzed by using analysis of variance and post hoc tests. SETTING: Data were from face-to-face interviews with residents of a relatively disadvantaged area of a medium-sized Canadian city. SUBJECTS: A sample of 910 individuals was drawn from a population listing of those aged 35 to 65 years in the project area (44% response rate). MEASURES: Measures include sense of belonging; income; community participation; and mental, physical, and perceived health. RESULTS: Data revealed the similarity of community boundaries based on sense of belonging with administrative boundaries. The communities differed significantly in income, community activities attended, and two health measures. The typology indicated the community rich in both income and sense of belonging had higher participation and health than did communities low in both or with mixed resources. CONCLUSIONS: Psychosocial indicators can be used to delineate community boundaries, which may be similar to administrative boundaries. A typology including both psychosocial and structural components can be a helpful preliminary step in interpreting area differences.

Relocation and Social Support Among Older Adults in Rural China.

OBJECTIVES: China's economic reforms have led to millions of citizens being relocated to support infrastructure development, reduce poverty, and address ecological, disaster-related and other concerns. This study expands on previous research on the implications of relocation in China by examining the impact of rural elders' relocation on the perceived availability of emotional, instrumental, and financial support. METHODS: Data were drawn from the Ankang Study of Aging and Health conducted with a representative sample of 1,062 rural residents aged 60 and over living in Ankang, China. Two-stage probit and least squares regression models assessed the impact of relocation on familial and nonfamilial emotional, instrumental, and financial support. RESULTS: Relocation was negatively associated with the number of social support resources that older adults perceived as being available. Although this was the case with regard to both familial and nonfamilial support, it was particularly evident with regard to family support and, within families, with regard to instrumental rather than financial or emotional support. DISCUSSION: Relocation has negative implications for the number of social support resources perceived to be available by older adults in rural China. China will need to come to terms with how to provide for the instrumental support needs of an aging society.

A More Nuanced Discussion Required.

Williams and colleagues make a valuable contribution to the home care policy literature, however, their arguments are not always convincing. Missing is a more nuanced discussion of research showing that even when governments provide more supportive services for older adults, families continue to provide care, and a discussion of alternative forms of caring that may arise in the future such as care from siblings and non-married older adults helping one another. Drawing on research pointing to several countries that offer caregivers a range of services would also have been helpful. Furthermore, it is not clear, as the authors argue, that the reason policy makers have moved toward providing for higher needs patients with fewer and fewer services for lower needs patients is a 'wait and see' attitude. Alternative reasoning is just as plausible. The benefits of providing supports to caregivers of children are well articulated but this does not negate the need among caregivers to older adults where some of the issues differ from caring for sick and disabled minors. Finally, action items for government are not offered but could have been helpful. Examples are provided.

Meaningful activity for persons with dementia: family caregiver perspectives.

Dementia threatens the capacity to engage in activity, suggesting meaningful activity may be helpful for persons with dementia (PWDs). This study explores the concept of meaningful activity, as defined by caregivers of PWDs. Family caregivers of PWDs, who provide 3 hours of care over 3 days/week, were interviewed after 6 months of cholinesterase inhibitors (ChEIs) therapy. Caregiver responses (N = 906) to the open-ended question What do you believe getting involved in activities outside the home means for someone with dementia are assessed. The themes are analyzed in terms of content, frequency, co-occurrence, and dementia severity. Caregivers emphasize the benefits of social connectedness, physical health, and mental stimulation. Activity is also viewed as respite, difficult, and has no meaning for care recipient. The implications of activity for self- and social-identity in PWD and caregiver are discussed. The benefits of activity varied by stage of disease. This knowledge indicates areas for improved activity provision and health care support.

Influence of home care on life satisfaction, loneliness, and perceived life stress.

Strong evidence has established the medical and health services utilization benefits of home care services for older adults. However, sparse research has been conducted on potential psychosocial benefits. Older adults (65 and over) receiving home care with their needs met are compared with persons who have unmet needs (whether they received home care or not) on three key indicators of quality of life ­ life satisfaction, loneliness, and perceived life stress. Data are drawn from the 2008-2009 Canadian Community Health Survey respondents who met the study criteria (n = 3,244). Regression analyses showed that older adults who had their home care needs met reported higher levels of life satisfaction, and lower levels of loneliness and perceived life stress, than those with unmet needs, net of co-variates. The results suggest that filling this home care gap would significantly raise quality of life by increasing social and environmental resilience to age in place.

Caregiver Well-Being: Intersections of Relationship and Gender.

We know much about caregiving women compared with caregiving men and caregiving spouses compared with caregiving adult children. We know less about the intersections of relationship and gender. This article explores this intersection through the well-being (burden and self-esteem) of caregivers to family members with dementia. Throughout British Columbia, Canada, 873 caregivers were interviewed in person for on average, over 1½ hours. The results reveal that daughters experience the highest burden but also the highest self-esteem, suggesting the role is less salient for their self-identities. Wives emerge as the most vulnerable of the four groups when both burden and self-esteem are considered. The data confirm the usefulness of the intersectionality framework for understanding co-occupancy of more than one status and indicate that positive cognitive well-being and negative affective well-being can be differentially related. Multivariate analyses confirm the importance of caregiver, not patient, characteristics for burden and self-esteem.

Burden and well-being among caregivers: examining the distinction.

PURPOSE: This study assessed overall quality of life of caregivers, using a path model in which burden was conceptualized as distinct from well-being. DESIGN AND METHODS: Data were drawn from a representative sample of caregivers to dementia and nondementia care receivers in British Columbia, Canada (N = 243). The model used was based on a previously proposed stress/appraisal path model and used multiple regression path estimates. Primary stressors were care receiver cognitive status, physical function, and behavioral problems; the primary appraisal variable was hours of caregiving during the previous week. Mediators were perceived social support, frequency of getting a break, and hours of formal service use; secondary appraisal was subjective burden. The outcome measure was generalized well-being. RESULTS: Well-being was directly affected by four variables: perceived social support, burden, self-esteem, and hours of informal care. Burden was affected directly by behavioral problems, frequency of getting a break, self-esteem, and informal hours of care and was not affected by perceived social support. DISCUSSION: The finding that perceived social support is strongly related to well-being but unrelated to burden reinforces the conceptual distinctiveness of the latter two concepts. This suggests that quality of life of caregivers could be improved even with burden in their lives and that the overwhelming focus in caregiving research on burden should be supplemented with an emphasis on quality of life.