Michel Bédard

Preferences for place of care and place of death among informal caregivers of the terminally ill

Objectives: (1) To determine informal caregivers perceptions about place of care and place of death; and (2) to identify variables associated with a home death among terminally ill individuals who received in–home support services in a publicly funded home care system. Participants and design: A total of 216 informal caregivers participated in a bereavement interview. Data collection included care recipient and informal caregiver characteristics, the use of and satisfaction with community services, and preferences about place of death. Results: Most caregivers reported that they and the care recipient had a preferred place of death (77 and 68%, respectively) with over 63% reporting home as the preferred place of death. Caregivers had a greater preference for an institutional death (14%) than care recipients (4.7%). While 30% of care recipients did not die in their preferred location, most caregivers (92%) felt, in retrospect, that where the care recipient died was the appropriate place of death. Most caregivers reported being satisfied with the care that was provided. The odds of dying at home were greater when the care recipient stated a preference for place of death (OR: 2.92; 95% CI: 1.25, 6.85), and the family physician made home visits during the care recipients last month of life (Univariate odds ratios (OR): 4.42; 95% CI: 1.46, 13.36). Discussion: The ethic of self–control and choice for the care recipient must be balanced with consideration for the well being of the informal caregiver and responsiveness of the community service system.

Pilot evaluation of a mindfulness-based intervention to improve quality of life among individuals who sustained traumatic brain injuries

Primary objective: To examine the potential efficacy of a mindfulness-based stress reduction approach to improve quality of life in individuals who have suffered traumatic brain injuries. Research design: Pre-post design with drop-outs as controls. Methods and procedures: We recruited individuals with mild to moderate brain injuries, at least 1 year post-injury. We measured their quality of life, psychological status, and function. Results of 10 participants who completed the programme were compared to three drop-outs with complete data. Experimental intervention: The intervention was delivered in 12-weekly group sessions. The intervention relied on insight meditation, breathing exercises, guided visualization, and group discussion. We aimed to encourage a new way of thinking about disability and life to bring a sense of acceptance, allowing participants to move beyond limiting beliefs. Main outcomes and results: The treatment group mean quality of life (SF-36) improved by 15.40 (SD = 9.08) compared to − 1.67 (SD = 16.65; p = 0.036) for controls. Improvements on the cognitive-affective domain of the Beck Depression Inventory II (BDI-II) were reported (p = 0.029), while changes in the overall BDI-II (p = 0.059) and the Positive Symptom Distress Inventory of the SCL-90R (p = 0.054) approached statistical significance. Conclusions: The intervention was simple, and improved quality of life after other treatment avenues for these participants were exhausted.

Burden in Caregivers of Cognitively Impaired Older Adults Living in the Community: Methodological Issues and Determinants

Considerable burden is reported by informal caregivers of older individuals with cognitive impairment. Significant progress in the understanding of determinants of this burden has been achieved. However, further progress could be attained if we considered important methodological issues that may have limited our understanding of caregiver burden. These issues include subgroups of care recipients and caregivers, measurement issues, research design, and statistical techniques. Fifty-three studies published between 1980 and 1997 (inclusive) that focused on caregiver burden were abstracted to determine the extent to which the methodological issues discussed above were considered. Overall, we found considerable variability among the studies surveyed. Further understanding of the caregiving process and reductions in caregiver burden will depend on the attention to methodological issues and understanding of burden across the whole caregiving career.

Factors associated with home death for individuals who receive home support services: a retrospective cohort study

ObjectivesTo determine the factors associated with a home death among older adults who received palliative care nursing home services in the home.MethodsThe participants in this retrospective cohort study were 151 family caregivers of patients who had died approximately 9 months prior to the study telephone interview. The interview focused on the last year of life and covered two main areas, patient characteristics and informal caregiver characteristics.ResultsOdds ratios [OR] and 95% confidence intervals [95% CI] were used to determine which of the 15 potential informal caregiver and seven patient predictor variables were associated with dying at home. Multivariate analysis revealed that the odds of dying at home were greater when the patient lived with a caregiver [OR = 7.85; 95% CI = (2.35, 26.27)], the patient stated a preference to die at home [OR= 6.51; 95% CI = (2.66,15.95)], and the family physician made home visits [OR = 4.79; 95% CI = (1.97,11.64)]. However the odds were lower for patients who had caregivers with fair to poor health status [OR = 0.22; 95% CI = (0.07, 0.65)] and for patients who used hospital palliative care beds [OR = 0.31; 95% CI = (0.12, 0.80)].DiscussionThe findings suggest that individuals who indicated a preference to die at home and resided with a healthy informal caregiver had better odds of dying at home. Home visits by a family physician were also associated with dying at home.

Assessment of Adherence to Renal Dosing Guidelines in Long‐Term Care Facilities

OBJECTIVE: We determined whether dosing guidelines based on creatinine clearance (Ccr) for renally excreted drugs are being applied when prescribing to long‐term care residents

Measuring capacity to complete an advance directive.

OBJECTIVE: To validate reference standards for the assessment of capacity to complete an advance directive and to develop and test three simple screening instruments.

Predicting Driving Performance in Older Adults: We Are Not There Yet!

Objective. We set up this study to determine the predictive value of approaches for which a statistical association with driving performance has been documented. Methods. We determined the statistical association (magnitude of association and probability of occurrence by chance alone) between four different predictors (the Mini-Mental State Examination, Trails A test, Useful Field of View [UFOV], and a composite measure of past driving incidents) and driving performance. We then explored the predictive value of these measures with receiver operating characteristic (ROC) curves and various cutoff values. Results. We identified associations between the predictors and driving performance well beyond the play of chance (p < .01). Nonetheless, the predictors had limited predictive value with areas under the curve ranging from .51 to .82. Conclusions. Statistical associations are not sufficient to infer adequate predictive value, especially when crucial decisions such as whether one can continue driving are at stake. The predictors we examined have limited predictive value if used as stand-alone screening tests.

Sleep disturbances in spousal caregivers of individuals with Alzheimer's disease

BACKGROUND Although sleep problems are commonly reported among dementia caregivers, the nature and frequency of caregiver sleep disruptions, and their relationship to health status, has received little empirical attention to date. METHODS The current study investigated the sleep situations of a sample of 60 spousal caregivers currently residing with a Alzheimer disease care recipient, including the frequency of nocturnal disruptions by the care recipient, and the reasons for these disruptions. In addition, exploratory correlations were computed between caregiver sleep variables and health outcomes. RESULTS Some 63% of spousal caregivers reported sleep disruptions due to the nocturnal behavior of the recipients of their care. Poorer caregiver sleep quality was associated with higher frequency of nocturnal disruptions by the care recipient, the care recipient needing to use the bathroom, and wandering, higher caregiver depressive symptoms, and higher levels of caregiver role burden. The frequency of nocturnal disruptions was associated with poorer mental health status and a greater number of depressive symptoms. CONCLUSIONS Results suggest that nocturnal disruptions by the care recipient may have adverse health consequences for spousal caregivers, and that further study of the determinants of caregiver sleep quality and health outcomes are warranted.

Caregiving and its impact on families of the terminally ill

Changes in the health care system have meant that increasing numbers of the terminally ill receive the majority of their care at home. The purpose of this paper was to document patterns of informal and formal care provided to the terminally ill and assess the impact caregiving has on family members. One hundred and fifty-one family caregivers were recruited for interviews from two community-nursing agencies in an urban region of the province of Ontario, Canada. The majority of respondents 119 (79%) were the female spouses of the patient. The numbers of caregivers providing assistance in specific functional activities were: bathing, 133 (88%); mobility, 123 (81%); dressing and undressing, 114 (76%); toileting, 101 (67%), and assistance at night 97 (64%). Sixty-two (41%) respondents reported that they had been providing some form of caregiving for over one year. They also reported that physical demands in caregiving increased substantially during the last three months of the care recipients life. As family caregivers provided more assistance in activities of daily living they were at greater risk of reporting high caregiver burden. The results of this paper identify the types of care provided by family caregivers of the terminally ill and the impact these demands have on the family caregiver.

Mortality, Independence in Living, and Re-fracture, One Year Following Hip Fracture in Canadians

Abstract Purposes: 1.To determine the one year mortality, institutionalization, and re-fracture rates following hip fractures in Canadians. 2.To compare post-fracture outcomes between those who fracture while living in institutions versus living in the community. 3.To compare Canadian data with that of other countries. Methods: an observational study involved a cohort of 527 men and women aged 50 and older with hip fractures identified by ICD-9 codes. Subjects were contacted 12 months following acute care discharge between April 1, 1995 and March 21, 1996, from four hospitals in Hamilton Ontario. Data on mortality, place of residence, and re-fractures were obtained by telephone contact and searches of re-hospitalization records. Results: data were obtained on 504 of the 527 Patients. Overall, 25.2% of patients died within one year. Among 399 Patients coming from the community, 20.5% died, 5.2% sustained another hip fracture and 19.0% (24.3% of survivors) were institutionalized. Among the 105 patients from institutions, only one returned to the community, 39.0% died, and 5.7% refractured a hip. Of those returning to the community, 62.4% had used home care services for a mean of 154 days (95% CI=129,179). Osteoporosis was noted in the hospital records for only nine of 141 Patients (1.7%). None had bisphosphonates or hormone replacement recorded and only 25 (17.7%) had vitamin D or calcium recorded as discharge medications. Interpretation: rates of mortality and loss of independence in living were similar to those found in other studies whereas hip re-fracture rates were higher (p