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Multiple transitions across care settings can be disruptive for older adults with dementia and their care partners, and can lead to fragmented care with adverse outcomes. This scoping review was conducted to identify and classify care trajectories across multiple settings for people with dementia, and to understand the prevalence of multiple transitions and associated factors at the individual and organizational levels. Searches of three databases, limited to peer-reviewed studies published between 2007 and 2017, provided 33 articles for inclusion. We identified 26 distinct care trajectories. Common trajectories involved hospital readmission or discharge from hospital to long-term care. Factors associated with transitions were identified mainly at the level of demographic and medical characteristics. Findings suggest a need for investing in stronger community-based systems of care that may reduce transitions. Further research is recommended to address knowledge gaps about complex and longitudinal care trajectories and trajectories experienced by sub-populations of people living with dementia.

Individuals with young onset dementia and their families face unique challenges, such as disruptions to their life cycle and relationships and a dearth of appropriate supports. Financial consequences have also been noted in the literature yet have not been explored in-depth. The purpose of this research was to qualitatively explore carers' experiences of financial consequences resulting from the young onset dementia of a family member and how these consequences may be managed. Eight carers (7 women and 1 man) provided a written online narrative about their journey with young onset dementia and any financial consequences experienced, with open-ended prompts to elicit details not yet shared. Narratives were inductively coded and analyzed using a thematic narrative approach. Carers described a voluntary or involuntary end to employment for the person with young onset dementia around the time of diagnosis. This engendered ongoing and anticipated financial consequences, combined with the need for carers to balance employment with the provision of care (which often meant early retirement for spousal carers). Common themes were tension between the needs to provide care and earn income, altered financial prospects, costs of care, and lack of available and accessible supports to ameliorate financial consequences. Findings illustrate the reality of financial consequences across the trajectory of young onset dementia. These consequences may manifest differently for spousal and child carers and are not being adequately addressed by existing supports.

The experience of practitioners who encounter mistreatment of an older adult with dementia by a caregiver in the home has received little attention in the literature. A critical research methodology aimed to understand the experience of professional agency, the ability to control outcomes and act in a meaningful way, of health and social service practitioners when encountering these cases in the home. Fifty-one practitioners from urban, rural and Northeastern communities in Ontario participated in semi-structured interviews, reflective journals, as well as focus group discussions. Theoretical thematic analysis of data led to the discovery of five themes: weathering the storm to realization; cognitive uncertainty; emotional upheaval; one's inability to resolve the mistreatment; and the double-edge sword of self-reflection. Understanding this experience is an essential step toward improving practice and policy, and achieving positive outcomes for the mistreated older adult with dementia and their caregiver within the home.

We compare reliable change scores and recently published anchor-based cutoffs for minimum clinically important difference (MCID) for the Repeatable Battery for the Assessment of Neuropsychological Status (RBANS) in a sample of patients diagnosed with various forms of dementia. For memory clinic patients with dementia evaluated twice over a one-year interval (N = 53), observed retest RBANS index scores were compared with predicted retest index scores based on regression formulae developed from cognitively healthy older adults. Patient RBANS change scores were also compared to suggested MCID anchors. Patients with dementia demonstrated a reliable decline on most RBANS indices, with evidence that the Visuospatial/Constructional and Language Indices might be less sensitive to decline over time. Although there was consistency between MCID and reliable changes in this sample, there was a substantial proportion where the MCID was exceeded, with no reliable change. We attempted to create MCIDs from the Clinical Dementia Rating Sum of Box scores for RBANS reliable change scores, but failed to find significant associations. Overall, the findings support use of the regression based reliable change approach, but we caution use of the MCID approach for the RBANS.

Objective: The ability to carry out instrumental activities (IADL) of daily living allows older adults to continue to live independently. Previous research suggested IADL were supported by multiple cognitive and neuropsychiatric factors. The primary goal of this study was to investigate whether immediate memory, executive functions, depression, and apathy, predicted unique variance in IADL over and above demographic variables (age and education) and general cognitive screening (Mini-Mental State Exam)., Method: Participants (N = 403) were recruited from the Rural and Remote Memory Clinic (75 no cognitive impairment; 75 mild cognitive impairment; 139 dementia due to Alzheimer's disease; 114 non-Alzheimer's dementia)., Results: Results of hierarchical regression analyses suggested immediate memory, executive functions, apathy, and depression each accounted for unique variance in IADL in the overall sample, but as a predictor only apathy predicted variance in IADLs above demographics and general cognitive status. Further analysis of the diagnostic subgroups suggested different variables were more strongly associated with IADL from group to group (apathy and depression for normal participants, apathy for MCI participants and for participants with dementia due to AD, but not for those with non-AD dementia)., Conclusions: The implications for developing cognitive rehabilitation interventions are discussed, with a recommendation for interventions for symptoms of apathy.

Informal caregivers provide the majority of care to persons with dementia; efforts to support caregivers' well-being are increasingly important in the context of limited formal healthcare supports. Informal caregiving is commonly associated with caregiver burden and burden may depend upon patient characteristics including neuropsychological profile, dementia severity, and dementia etiology. This study investigated predictors of caregiver burden in a sample of 213 Memory Clinic patients diagnosed with dementia and whose caregivers provided collateral information. Caregiver burden was similar irrespective of dementia etiology. Beyond the expected predictive value of dementia severity on caregiver burden, patient behavioral symptoms, functional dependence, and caregiver psychological distress were predictive of caregiver burden. In contrast, care-recipient neuropsychological performance did not predict burden. These findings suggest that beyond severity of dementia, specific behavioral disturbances predict caregiver burden which may have implications for programming and intervention aimed at supporting and sustaining caregivers in their role.

Background: Original studies published over the last decade regarding time trends in dementia report mixed results. The aims of the present study were to use linked administrative health data for the province of Saskatchewan for the period 2005/2006 to 2012/2013 to: (1) examine simultaneous temporal trends in annual age- and sex-specific dementia incidence and prevalence among individuals aged 45 and older, and (2) stratify the changes in incidence over time by database of identification., Methods: Using a population-based retrospective cohort study design, data were extracted from seven provincial administrative health databases linked by a unique anonymized identification number. Individuals 45 years and older at first identification of dementia between April 1, 2005 and March 31, 2013 were included, based on case definition criteria met within any one of four administrative health databases (hospital, physician, prescription drug, and long-term care)., Results: Between 2005/2006 and 2012/2013, the 12-month age-standardized incidence rate of dementia declined significantly by 11.07% and the 12-month age-standardized prevalence increased significantly by 30.54%. The number of incident cases decreased from 3,389 to 3,270 and the number of prevalent cases increased from 8,795 to 13,012. Incidence rate reductions were observed in every database of identification., Conclusions: We observed a simultaneous trend of decreasing incidence and increasing prevalence of dementia over a relatively short 8-year time period from 2005/2006 to 2012/2013. These trends indicate that the average survival time of dementia is lengthening. Continued observation of these time trends is warranted given the short study period.

Background: Goal oriented cognitive rehabilitation is a promising intervention for individuals diagnosed with mild cognitive impairment (MCI) or dementia due to Alzheimer Disease (AD). Videoconferencing delivered cognitive rehabilitation is a potential avenue for increasing accessibility for rural patients and their families., Objective: First, we were concerned with the accessibility of the treatment for individuals in rural and remote areas. Second, client-centered goal setting was explored by asking this sample about their goals for cognitive rehabilitation., Method: We mailed questions to all active patients with diagnoses of MCI or dementia due to AD of a rural memory clinic and compare features of the responders versus the non-responders. We asked about interest in videoconferencing delivered treatment and about goals for cognitive rehabilitation, which were thematically analyzed., Results: The responders (N = 25) were similar to non-responders in severity, depression, and caregiver burden. Of the responders, 80% were interested in videoconferencing developed treatment. A thematic analysis coded 95% of responses as amenable to cognitive rehabilitation. Participants' goals were focused on memory, household activities, other cognitive domains, recreation, and higher order tasks., Conclusions: This work informs the development of both in-person and videoconferencing delivered cognitive rehabilitation for individuals diagnosed with MCI or dementia.

The Zarit Burden Interview (ZBI) is commonly used to measure dementia caregiver burden, but its factor structure is unclear. A two-factor structure for the 12-item ZBI, "personal strain" and "role strain," has been shown, but recent data suggest that an additional factor of "guilt" is embedded in the "role strain" items. The 12-item ZBI administered to 194 informal rural and urban caregivers of persons diagnosed with dementia was analyzed using exploratory factor analysis. A two-factor structure, with item loadings consistent with previously conceptualized constructs of "personal strain" and "role strain," was found. Moreover, this factor structure was invariant to caregiver subgroups. When the predictive value of these factors was explored, only "personal strain" was important in predicting caregiver psychological distress, measured with the Brief Symptom Inventory. However, "role strain," which included the hypothesized "guilt" items, did not appear to be an important predictor of caregiver distress., (© The Author(s) 2014.)

Forecasts of increasing prevalence of dementia in rural settings, coupled with reliance on family caregiver support, indicate that a greater understanding of caregiver distress in these contexts is necessary. The purpose of this study was to examine family caregiver burden and severity of distress on the day that a family member was diagnosed with dementia at a memory clinic that serves a rural population. Participants in this retrospective study were 231 primary family caregivers of a rural community-dwelling person with dementia. On the diagnostic day, women reported more burden and severity of distress than men and spouses reported more severity of distress than adult children. A structural equation model was not supported for the entire sample, but was supported for women caregivers only (n = 161). Caregiver distress related to dementia-specific behaviors explained both global distress and burden. Patients' functional decline was related to caregiver burden., (© The Author(s) 2014.)

Background: Determining the epidemiology of dementia among the population as a whole in specific jurisdictions - including the long-term care population-is essential to providing appropriate care. The objectives of this study were to use linked administrative databases in the province of Saskatchewan to determine the 12-month incidence and prevalence of dementia for the 2012/13 period (1) among individuals aged 45 and older in the province of Saskatchewan, (2) according to age group and sex, and (3) according to diagnosis code and other case definition criteria., Methods: We used a population-based retrospective cohort study design and extracted data from 10 provincial health databases linked by a unique health services number. The cohort included individuals 45 years and older at first identification of dementia between April 1, 2001 and March 31, 2013 based on case definitions met within any one of four administrative health databases (Hospital Discharge Abstracts, Physician Service Claims, Prescription Drug, and RAI-MDS, i.e., Long-term Care)., Results: A total of 3,270 incident cases of dementia (7.28 per 1,000 PAR) and 13,012 prevalent cases (28.16 per 1,000 PAR) were identified during 2012/13. This study found the incidence rate increased by 2.8 to 5.1 times and the prevalence rate increased by 2.6 to 4.6 times every 10 years after 45 years of age. Overall, the age-standardised incidence rate was significantly lower among females than males (7.04 vs. 7.65 per 1,000 PAR) and the age-standardised prevalence rate was significantly higher among females than males (28.92 vs. 26.53 per 1,000 PAR). Over one-quarter (28 %) of all incident cases were admitted to long-term care before a diagnosis was formally recorded in physician or hospital data, and nearly two-thirds of these cases were identified at admission with impairment at the moderate to very severe level or a disease category of Alzheimer's disease/other dementia., Conclusions: Linking multiple sources of registry data contributes to our understanding of the epidemiology of dementia across multiple segments of the population, inclusive of individuals residing in long-term care. This information is foundational for public awareness and policy recommendations, health promotion and prevention strategies, appropriate health resource planning, and research priorities.

Community-based services are important for improving outcomes for individuals with dementia and their caregivers. This study examined: (a) availability of rural dementia-related services in the Canadian province of Saskatchewan, and (b) orientation of services toward six key attributes of primary health care (i.e., information/education, accessibility, population orientation, coordinated care, comprehensiveness, quality of care). Data were collected from 71 rural Home Care Assessors via cross-sectional survey. Basic health services were available in most communities (e.g., pharmacists, family physicians, palliative care, adult day programs, home care, long-term care facilities). Dementia-specific services typically were unavailable (e.g., health promotion, counseling, caregiver support groups, transportation, week-end/night respite). Mean scores on the primary health care orientation scales were low (range 12.4 to 17.5/25). Specific services to address needs of rural individuals with dementia and their caregivers are limited in availability and fit with primary health care attributes.

It has been observed that persons subsequently diagnosed with dementia often have difficulty completing commonly administered tests of executive function (EF). Interpretation of incompletion is problematic given the composite nature of EF tasks and the multiple impairments often demonstrated by persons with dementia. The goal of the present study was to determine the rate of failure to complete the Color-Word Stroop and Part B of the Trail-Making Test (TMT-B) in a clinical sample of persons with dementia and to explore neuropsychological predictors of incompletion. This study analyzed neuropsychological test data from 213 persons diagnosed with dementia at an interdisciplinary memory clinic. Index scores from the Repeatable Battery for the Assessment of Neuropsychological Status (RBANS) were examined as potential predictors of Color-Word Stroop and TMT-B completion in hierarchical logistic regression models. Rates of incompletion were high for both tests (60.6% for the Color-Word Stroop and 67.6% for the TMT-B). RBANS Language Index scores on the Color-Word Stroop predicted completion, while scores on the RBANS Visuospatial, Attention, and Immediate Memory indexes predicted TMT-B completion. The majority of the dementia sample was unable to complete the Color-Word Stroop and TMT-B executive tasks. Non-EF impairments may be implicated in completion of these tasks.

Introduction: Patient satisfaction is a key aspect of quality of care and can inform continuous quality improvement. Of the few studies that have reported on patient satisfaction with telehealth in programs aimed at individuals with memory problems, none has reported on the psychometric properties of the user satisfaction scales used., Materials and Methods: We evaluated the construct validity and internal consistency reliability of the Telehealth Satisfaction Scale (TeSS), a 10-item scale adapted for use in a rural and remote memory clinic (RRMC). The RRMC is a one-stop interprofessional clinic for rural and remote seniors with suspected dementia, located in a tertiary-care hospital. Telehealth videoconferencing is used for preclinic assessment and for follow-up. Patients and caregivers completed the TeSS after each telehealth appointment. With data from 223 patients, exploratory factor analysis was conducted using the principal components analysis extraction method., Results: The eigenvalue for the first factor (5.2) was greater than 1 and much larger than the second eigenvalue (0.92), supporting a one-factor solution that was confirmed by the scree plot. The total variance explained by factor 1 was 52.1%. Factor loadings (range, 0.54-0.84) were above recommended cutoffs. The TeSS items demonstrated high internal consistency reliability (Cronbach's alpha=0.90). Satisfaction scores on the TeSS items ranged from 3.43 to 3.72 on a 4-point Likert scale, indicating high satisfaction with telehealth., Conclusions: The study findings demonstrate high user satisfaction with telehealth in a rural memory clinic and the sound psychometric properties of the TeSS in this population.

Although only 20-50% of individuals with dementia are diagnosed, early diagnosis enables patients and families to access interventions and services, and plan for the future. The current study explored the experiences of rural family caregivers in the period leading up to a diagnostic assessment at a Canadian memory clinic, their hopes and expectations of the assessment, and their experiences in the six months following diagnosis. Using a longitudinal, retrospective and prospective qualitative research design, caregivers of 30 patients referred to the clinic were interviewed during the diagnostic assessment process and again six months after the diagnosis. Most caregivers reported first noticing symptoms two years prior to diagnosis. The pre-diagnostic interviews revealed a prevalent 'need to know' among caregivers that drove the help-seeking process. Caregivers hoped that the diagnosis would have the benefits of 'naming it,' 'accessing treatment,' 'knowing what to expect,' and 'receiving guidance.' When asked six months later about the impact of the diagnosis, the main theme was 'acceptance and moving forward.' Caregivers reported that the diagnosis provided 'relief,' 'validation,' and 'improved access to services.' These findings can inform care practices of primary health care providers who represent the first point of contact regarding expectations and experiences of dementia-related diagnoses., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

Introduction: Until dementias can be prevented or cured, interventions that maintain or maximize cognitive and functional abilities will remain critical healthcare and research priorities. Best practice guidelines suggest that individualized exercise programs may improve fitness, cognition, and function for people with mild to moderate dementia; however, few high quality exercise intervention trials exist for this population. Increasingly, telehealth is being used to improve the delivery and availability of healthcare services for individuals living in rural areas, including exercise. This article describes the feasibility of a telehealth-delivered exercise intervention for rural, community-dwelling individuals diagnosed with dementia and their caregivers., Methods: A mixed-methods two-phase exploratory approach was used. In phase 1, Rural and Remote Memory Clinic (RRMC; Saskatoon, Saskatchewan, Canada) patients and caregivers were surveyed about current exercise levels, perceptions about exercise, exercise preferences, and perceived barriers to exercise; community resources, acceptability of telehealth exercise interventions, and physical activity and exercise attitudes (Older Persons Attitudes Toward Physical Activity and Exercise Questionnaire). Data were analyzed using descriptive statistics and factors associated with willingness to participate in a telehealth exercise intervention were explored using hierarchical linear regression. In phase 2, acceptability, practicality, and implementation were examined. Two RRMC patient-caregiver dyads completed a 4-week exercise program delivered via telehealth. Observed engagement in the telehealth-based exercise intervention, using a revised version of the Menorah Park Engagement Scale (by Hearthstone Alzheimer Care), and attendance were monitored. Patient-caregiver dyads were interviewed at the end of the intervention phase and completed a telehealth and intervention satisfaction questionnaire. Interviews were thematically analyzed and questionnaire data were analyzed descriptively., Results: Phase 1: Survey response rate was 50% (n=77). Patients (n=42) and caregivers (n=35) were equally likely to express interest in participating in the telehealth-based intervention. Willingness to participate in group exercise was the only significant predictor of willingness to participate in a telehealth-based intervention, accounting for 24.4% of the variance (F-statistic=16.14, p<0.001). Phase 2: Attendance rates were high for the telehealth-delivered exercise sessions. Engagement scale data indicated that the caregivers helped the patient participants during the intervention and that, overall, all participants were engaged in the target activity during the sessions. Ease of getting to the telehealth department, how well privacy was respected, ability to focus without distraction due to telehealth, ability to engage with group, and ability to engage with facilitator over telehealth were rated highly, as was the overall intervention experience. Telehealth voice and visual quality, ease of room set-up and conduciveness of the room to exercise were rated as good. Thematic analysis found that both dyads liked participating in the intervention together as a couple, and that participating in an exercise intervention with persons who were in a similar situations was deemed beneficial., Conclusions: Study results identified that although there are barriers to overcome, the development and evaluation of telehealth-delivered exercise interventions is a timely and important research activity that has the potential to facilitate improved healthcare services for individuals with dementia and their caregivers.

This article discusses the First Nations sample of a larger study on dementia care decisions and knowledge sharing.The purpose is to enhance understanding of the process of knowledge sharing among health care practitioners(HCPs), care partners, and persons with dementia (PWDs) within a rural First Nations community. A constructivist grounded theory methodology was used. Nineteen interviews were conducted at three points in time with two dementia care networks that included two PWDs, three care partners, and two HCPs. A sharing dementia care knowledge model was conceived, with the PWDs and their care partners at the centre. Knowledge sharing in the model was represented by three broad themes: (1) developing trusting relationships, (2) accessing and adapting the information, and (3) applying the information. Culturally sensitive approaches were essential to developing trusting relationships. Once developed, knowledge sharing through accessing, adapting, and applying the information was possible.

Earlier research suggests that geographic location matters for informal caregivers of persons with dementia: rural caregivers tend to rely on more informal supports and may report more psychological distress and burden than urban caregivers. Differential access to services may underlie these findings, but degree of rurality is typically measured with population size. In contrast, the current article measured degree of rurality with standardized scale of access to metropolitan centers. In a large sample we found nonsignificant and trivial associations between metropolitan access with self-reported caregiver distress, (N = 272; Brief Symptom Inventory), burden (N = 234; Zarit Burden Interview), and coping (n = 46; Jalowiec Coping Scale). The null findings were likely related to the use of a proxy variable for dementia-related caregiver supports (i.e., degree of access to metropolitan centers). In future research, direct measures of access to appropriate dementia related services should be used to study caregiver outcomes.

Objective: We investigated patient socio-demographic, clinical and functional factors predicting cholinesterase inhibitor discontinuation by patients presenting to a memory clinic in Saskatoon, Saskatchewan., Methods: Data collection began in March 2004 at the Rural and Remote Memory Clinic where family physicians referred their non-institutionalized patients. Neurological and neuropsychological assessment, patient and caregiver questionnaires provided the socio-demographic, clinical and functional variables. Univariate logistic regression analysis was used to examine possible associations between each independent variable and the binary outcome variable of treatment discontinuation. Multivariate logistic regression was used to determine predictors of cholinesterase inhibitor discontinuation within six months of drug initiation., Results: Our sample consisted of the first 63 patients (60.3% female) for whom we prescribed a cholinesterase inhibitor. The mean age at clinic day was 74.56 years (SD=7.78). We found that years of formal education was the only variable significantly associated with cholinesterase inhibitor discontinuation by six months. The more years of formal education, the lower the rate of drug discontinuation by six months., Conclusions: Likelihood of cholinesterase inhibitor discontinuation by six months was predicted by fewer years of formal education.

Introduction: Accessing, assessing, exchanging, and applying dementia care information can be challenging in rural communities for healthcare practitioners (HCPs), persons with dementia (PWD), and their care partners. The overall purpose of this research was to enable HCPs, care partners, and PWD to use dementia care information more effectively by examining their information needs, how these change over time, and how they access, assess, and apply the knowledge., Methods: A qualitative interpretive descriptive approach was used. A convenience sample was initially recruited through study collaborators in Southwestern Ontario, followed by purposive sampling. Nine rural dementia care networks consisting of PWD (n = 5), care partners (n = 14), and HCPs (n = 14) were recruited and 80 interviews were conducted at three time points. Transcripts were coded using Lubrosky's thematic analysis., Results: Six stages of the dementia care journey were identified: (1) recognizing the symptoms; (2) receiving a diagnosis; (3) loss of independence; (4) initiating and using home care and respite services; (5) long-term care (LTC) placement; and (6) decisions related to end-of-life care. Rural care partners identified the need for different types of knowledge during each of these critical decision points of the dementia care journey. They accessed information from family members, friends, local organizations, and dementia internet sites. Persons with dementia tended not to identify the need for dementia care information. The HCPs accessed dementia care information from their own organization, other organizations, and internet sites. Care partners and HCPs assessed the trustworthiness of the information based on whether the source was a well-known agency or their own organization. Barriers to knowledge exchange included: lack of rural community-based services for dementia care; care partners reluctant to seek help and had limited energy; and lack of integration of dementia-related services and supports. Facilitators of knowledge exchange included: rural care partners with healthcare experience who were actively seeking information; development of trusting relationships between HCPs, care partners, and PWD; and formal mechanisms for exchanging information within and across rural community-based organizations., Methods: This research illustrates the stages of the dementia care journey, and the types of information typically needed, accessed, assessed, and applied at each stage. Healthcare practitioners can use these findings to support rural care partners in navigating their dementia care journey. Support is needed as care partners often do not have the time, energy, skills, or knowledge to seek out dementia care information independently. In addition, PWD typically do not recognize the need for this knowledge, leaving care partners potentially isolated in this journey. Developing formal linkages within and across rural organizations will facilitate knowledge exchange and the delivery of cost-effective, quality dementia care. However, additional rural community-based resources are urgently needed to implement these recommendations. This may require a redistribution of resources from acute care to rural community care.

Objectives: This study examined nursing aides' (NAs) perspectives of specific incidents of combative behavior from nursing home residents with dementia, particularly their attributions for the behaviors., Design: This research is part of a larger mixed-method study exploring combative behavior as experienced by NAs. The data for this component were collected using a cross-sectional survey design. NAs used a prospective event-reporting log or "diary" to record consecutive incidents of combative resident behaviors., Setting: Eleven rural nursing homes located in a mid-Western Canadian province., Participants: Eighty-three full-time, part-time, and casual NAs., Measurements: NAs used the diary instrument to document details of each incident of combative behavior over a 144-hour period. Findings from the diaries were explored in subsequent focus groups (reported elsewhere)., Results: The 83 NAs reported 409 incidents linked to residents with dementia, with a range of 1 to 28 incidents per aide. The frequency of incidents in the preceding month was reported as follows: none (11.1%), 1-5 times (58.7%), 6-10 times (11.1%), more than 10 times (19.0%). Most incidents occurred in residents' rooms (65%) during personal care, with the most frequent behaviors reported as slapping, squeezing, punching or hitting, and shoving. The main perceived causes of the behavior were cognitive impairment and residents not wanting care. NAs reported they could control or modify the cause in only 3% of incidents, and they were not optimistic about preventing future combative behaviors. They continued to provide care in 89% of incidents., Conclusion: In the diaries, NAs identified resident-related factors (cognitive impairment and not wanting care) as the main causes of combative behavior, and they reported having no control over these factors. In the focus groups conducted to explore diary findings, NAs reported system-level factors, also beyond their control, which affected their practices and increased their risk of exposure to combative behavior. Taken together, the results of this research program suggest a need for a broad multifaceted strategy aimed at addressing the modifiable risk factors, which includes recognizing NAs as equal partners in a team process backed by strong organizational support and commitment., (Copyright © 2012 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.)

The purpose of this study was to identify key concepts in dementia care from the perspective of registered nurses working in the Canadian north. Interviews were conducted with RNs employed in small, remote northern communities about their experiences with dementia assessment and caregiving and their perceptions about dementia care resources. The grounded theory method used in analyzing the interview data led to the development of a theory about dementia awareness in northern nursing practice.The study identified 3 categories of conditions that influence northern RNs' awareness of dementia: dementia care and community caregiving, characteristics of the northern RN, and northern nursing worklife. The findings suggest the need for educational programs and health-care policies that increase awareness of dementia in northern nursing practice and thereby improve the care provided to northern people.

Background: Rest-activity and sleep-wake cycles are controlled by the endogenous circadian rhythm generated by the suprachiasmatic nuclei (SCN) of the hypothalamus. Degenerative changes in the SCN appear to be a biological basis for circadian disturbances in people with dementia, and might be reversed by stimulation of the SCN by light., Objectives: The review assesses the evidence of effectiveness of light therapy in managing cognitive, sleep, functional, behavioural, or psychiatric disturbances associated with dementia., Search Strategy: The Specialized Register of the Cochrane Dementia and Cognitive Improvement Group (CDCIG), The Cochrane Library, MEDLINE, EMBASE, PsycINFO, CINAHL and LILACS were searched on 4 March 2008 using the terms: "bright light*", "light box*", "light visor*", "dawn-dusk*", phototherapy, "photo therapy", "light therapy" "light treatment", light* . The CDCIG Specialized Register contains records from all major health care databases (The Cochrane Library, MEDLINE, EMBASE, PsycINFO, CINAHL, LILACS) as well as from many trials databases and grey literature sources., Selection Criteria: All relevant, randomized clinical trials in which light therapy, at any intensity and duration, was compared with a control group for the effect on managing cognition, sleep, function, behavioural, or psychiatric disturbances (as well as changes in institutionalization rates or cost of care) in people with dementia of any type and degree of severity., Data Collection and Analysis: Three reviewers independently assessed the retrieved articles for relevance and methodological quality, and extracted data from the selected studies. Statistically significant differences in outcomes between the treatment and control groups at end of treatment and follow-up were examined. Each study was summarized using a measure of effect (e.g. mean difference)., Main Results: Eight trials met the inclusion criteria. However, three of the studies could not be included in the analyses because of inappropriate reported study analyses or inability to retrieve the required data from the investigators. This review revealed no adequate evidence of the effectiveness of light therapy in managing cognition, sleep, function, behaviour, or psychiatric disturbances associated with dementia., Authors' Conclusions: There is insufficient evidence to assess the value of light therapy for people with dementia. Most of the available studies are not of high methodological quality and further research is required.

Background: There is some evidence that physical activity delays the onset of dementia in healthy older adults and slows down cognitive decline to prevent the onset of cognitive disability. Studies using animal models suggest that physical activity has the potential to attenuate the pathophysiology of dementia. 'Physical activity' refers to 'usual care plus physical activity'., Objectives: Primary: do physical activity programs maintain or improve cognition, function, behaviour, depression, and mortality compared to usual care in older persons with dementia?Secondary: do physical activity programs have an indirect positive impact on family caregivers' health, quality of life, and mortality compared to family caregivers of older persons with dementia who received usual care alone? Do physical activity programs reduce the use of health care services (e.g., visits to the emergency department) compared to usual care in older persons with dementia and their family caregiver?, Search Strategy: The trials were identified from searches of the Specialized Register of the Cochrane Dementia and Cognitive Improvement Group, The Cochrane Library, MEDLINE, EMBASE, PsycINFO, CINAHL and LILACS on 9 September 2007 using the search terms: exercise OR "physical activity" OR cycling OR swim* OR gym* OR walk* OR danc* OR yoga OR "tai chi"., Selection Criteria: All relevant, randomized controlled trials in which physical activity programs were compared with usual care for the effect on managing or improving cognition, function, behaviour, depression, and mortality in people with dementia of any type and degree of severity. Secondary outcomes related to the family caregiver(s) included quality of life, mortality, and use of health care services were intended to be examined., Data Collection and Analysis: Two reviewers independently assessed the retrieved articles for relevance and methodological quality, and extracted data from the selected trials. These were pooled were appropriate., Main Results: Four trials met the inclusion criteria. However, only two trials were included in the analyses because the required data from the other two trials were not made available. Only one meta-analysis was conducted. The results from this review suggest that there is insufficient evidence of the effectiveness of physical activity programs in managing or improving cognition, function, behaviour, depression, and mortality in people with dementia. Few trials have examined these important outcomes. In addition, family caregiver outcomes and use of health care services were not reported in any of the included trials., Authors' Conclusions: There is insufficient evidence to be able to say whether or not physical activity programs are beneficial for people with dementia.

Background: There are a number of studies that suggest a relationship between decline of melatonin function and the symptoms of dementia., Objectives: The review assessed the evidence of clinical efficacy and safety of melatonin in the treatment of manifestations of dementia or cognitive impairment (CI)., Search Strategy: The Cochrane Dementia and Cognitive Improvement Group's Specialized Register was searched for trials involving melatonin on 5 October 2005. The search terms used were MELATONIN, and N-ACETYL-5-METHOXYTRYPTAMINE. This Register contains records from all major health care databases as well as many ongoing trials databases and is updated regularly., Selection Criteria: All relevant, randomized controlled trials in which orally administered melatonin in any dosage was compared with a control group for the effect on managing cognitive, behavioural (excluding sleep), and/or affective disturbances of people with dementia of any degree of severity., Data Collection and Analysis: Two to three reviewers independently assessed the retrieved articles for relevance and methodological quality, and extracted data from the selected studies. Statistically significant differences in changes in outcomes from baseline to end of treatment between the melatonin and control groups were examined. Each study was summarized using a measure of effect (e.g. mean difference) and meta-analyses were conducted when appropriate., Main Results: Three studies met the inclusion criteria. This review revealed non-significant effects from the pooled estimates of MMSE cognitive, and ADAS-cognitive change scores. Individual study estimates for treatment effect demonstrated a significant improvement for melatonin compared with placebo in behavioural and affective symptoms as measured by the ADAS non-cognitive scale in a study of 20 patients, and the Neuropsychiatric Inventory (NPI) following treatment with 2.5 mg/day (SR) melatonin, but not with 10mg/day (IR) melatonin in a larger study of 157 patients. The remainder of the treatment effects for affect, behaviour and activities of daily living were non-significant., Authors' Conclusions: There is insufficient evidence to support the effectiveness of melatonin in managing the cognitive and non-cognitive sequelae of dementia.

Purpose: This study compared nursing aides (NAs) employed in rural nursing homes with and without dementia special care units (SCUs) on (1) exposure to and distress from disruptive behaviours exhibited by residents, (2) job strain and (3) physical assault., Design and Methods: The data were drawn from a larger study conducted in Saskatchewan, Canada, in which all rural nursing homes of < or = 100 beds that had an SCU were matched to same-sized rural facilities with no SCU. Nursing aides (n = 355) completed a mailed survey questionnaire., Results: Nursing aides employed in nursing homes with an SCU reported significantly less frequent exposure to disruptive behaviours (including aggressive and aversive behaviours) than NAs in non-SCU facilities, less distress when these behaviours were directed toward them, less exposure to aggressive behaviour during caregiving, lower job demands and lower job strain. There was a trend toward increased risk of being assaulted in the last year associated with being in a non-SCU facility. Having a permanent position, increased job strain, and feeling inadequately prepared for dementia care were significantly associated with higher risk of being assaulted. In the SCU facilities, NAs who worked more time on the SCU reported more assaults but less distress from disruptive behaviour, lower psychological job demands, lower job strain and greater work autonomy., Implications: Providing more dementia care training and reducing job demands and job strain may help to reduce work-related stress and physical assault of nursing aides employed in nursing homes.

Dementia Special Care Units (SCUs) are more likely to be found in larger nursing homes, which tend to be located in urban centres, rather than in smaller rural nursing homes. Reasons for the small number of rural SCUs are not known, although it has been speculated that space and staffing constraints, lack of a critical mass of residents needing specialized care and limited resources may be important factors. The purpose of this study was to describe the development of SCUs in eight small rural nursing homes (31-100 beds) in Saskatchewan, Canada, from the perspective of nursing directors involved in planning and implementing the units. Although the initial focus was on how and why the SCUs were established, the key finding was the critical role of nursing leadership and supervision in creating and sustaining the unit. Even the most successful SCUs required constant vigilance to maintain an effective program, highlighting their inherent fragility and the need for a designated, committed leader. Four key leadership activities were identified: perpetual reinforcement and enforcement of SCU goals and ideals; support, guidance and mentoring of staff; empowerment of staff; and liaison/public relations.

Although one in four seniors currently lives in a rural area, little is known about the capacity of rural nursing homes to provide specialized dementia services. The physical and social environments are increasingly recognized as important factors in the quality of life and functional ability of persons with dementia. This study compared eight rural nursing homes (those located in centres with populations < or =15,000) that had created dementia Special Care Units (SCUs) to eight same-sized rural nursing homes that did not have SCUs. Outcomes were assessed in relation to residents, staff, family members, and the environment. In this paper we describe the overall study design and findings from the environmental assessment. Analysis of variance (ANOVA) was used to compare the SCU versus non-SCU environments on the nine dimensions of the Physical Environmental Assessment Protocol (PEAP), which was used to assess the physical environment. The SCUs were more supportive on six dimensions: maximizing awareness and orientation, maximizing safety and security, regulation of stimulation, quality of stimulation, opportunities for personal control, and continuity of the self. Analysis of variance was also used to compare the groups on the six subscales of the Nursing Unit Rating Scale (NURS), which assesses the social environment of dementia care settings. The SCUs were more supportive on the Separation and Stimulation subscales, indicating that SCUs had greater separation of residents with dementia from other residents for activities of daily living and programming, and better control of non-meaningful stimulation.

Background: Rest-activity and sleep-wake cycles are controlled by the endogenous circadian rhythm generated by the suprachiasmatic nuclei (SCN) of the hypothalamus. Degenerative changes in the SCN appear to be a biological basis for circadian disturbances in people with dementia, and might be reversed by stimulation of the SCN by light., Objectives: The review assesses the efficacy of bright light therapy (BLT) in managing sleep, behaviour, mood, and cognitive disturbances associated with dementia., Search Strategy: The trials were identified from a search of the Specialized Register of the Cochrane Dementia and Cognitive Improvement Group on 27 January 2004 using the terms "bright light*", "light box*", "light visor*", "dawn-dusk*", phototherapy (MESH), phototherapy, "photo therapy", "light therapy" "light treatment", light*., Selection Criteria: All relevant, randomized controlled trials in which BLT, at any intensity and duration, was compared with a control group for the effect on managing sleep, behavioural, mood, and cognitive disturbances (as well as changes in institutionalization rates and cost of care) on people with dementia of any degree of severity., Data Collection and Analysis: Three reviewers independently assessed the retrieved articles for relevance, methodological quality, and extracted data from the selected studies. The statistically significant differences in changes in outcomes from baseline to end of treatment and from baseline to follow-up between the light therapy and control groups were examined. Each study was summarized using a measure of effect (e.g. mean difference). Owing to lack of homogeneity between studies, their results were not combined., Main Results: Five studies met the inclusion criteria. However, only three were included in the analyses because of inappropriate analyses reported or inability to retrieve the required data from the investigators. This review revealed no adequate evidence of the effectiveness of BLT in managing sleep, behaviour, and mood disturbances associated with dementia., Reviewers' Conclusions: There is insufficient evidence to assess the value of BLT for people with dementia. The available studies are of poor quality and further research is required.

Research in dementia care during the past few years has focused on identifying and designing therapeutic physical environments while the psychosocial environment has remained a largely unexplored domain. More recently, discussions regarding the effect of the social environment on individuals with dementia have increased in the literature. Nevertheless, the authors suggest the term "social environment" does not adequately represent the critical psychological and emotional effect social interaction has on individuals with cognitive impairment. Through an examination of the literature, three conceptual frameworks, and clinical observations of several special care units (SCUs), the authors suggest that the psychosocial environment is the most important element of institutional dementia care. A preliminary conceptualization is offered which identifies the elements necessary to facilitate a supportive psychosocial environment in long-term care. The potential benefits of implementing such a model include preservation of personhood, simple recognition of remaining abilities and a decreased focus on disabilities, and reduction of pharmacologic therapy for disruptive behavior resulting in overall improvement in quality of life.

The purpose of this article is to describe how the use of quantitative (quasi-experimental) and qualitative (grounded-theory) methods in an evaluation of new dementia special care units led to a better understanding of how the nursing home environment affects residents with dementia, which in turn helped to advance theory development in person-environment interaction. The environmental intervention involved changes in social density (size of resident group), spatial density (space per person), and privacy. A second aim of the article is to illustrate that applied research cannot be perfectly preplanned; rather, it is a process that involves ongoing decisions and management of unexpected events. We describe the sequence of key methodological decisions made during the planning, implementation, and integration phases of the study, which was conducted over a 21-month period. Results of this study highlight the benefits of mixed-method designs for evaluation research., (Copyright 2002 Wiley Periodicals, Inc. Res Nurs Health 25:479-488, 2002.)

Background: Although the behavioral changes with progressive dementia are seen to increasingly depend on the environmental context until late stage disease, measurement has not reflected this interaction in real time to allow examination of antecedents to disruptive behavior., Objectives: To develop and evaluate the psychometric properties of the Environment-Behavior Interaction Code (EBIC) for use in dementia care research with either sequential or nonsequential analyses of behavioral data., Method: Development of the computer-based (sequential event format) EBIC provided an observational coding system to classify all behavior and environmental context in real time, so that the probability of social environmental antecedents to resident disruptive behavior could be estimated. A checklist (interval format) EBIC, based on the same behavioral taxonomy, was developed for clinical outcome research. A total of 158 elderly residents of dementia care units were purposively selected from three large long-term care facilities for the psychometric study components., Results: Psychometric results indicated significant (p < 0.01) known-groups validity for the disruptive behavior construct, which was defined as a composite of aversive, harmful, and high intensity neutral behavior. Interrater agreement for the event format of the EBIC was estimated by average kappa (0.65) and percentage agreement (78%). For the interval format, the mean interrater kappa was 0.80 with 96% agreement. Stability of the event format using a 2-week retest interval ranged from r= .50 (positive behavior) to r = 0.73 (negative behavior, defined as aversive + harmful). On replication with a new sample, stability was higher for positive (r = 0.92) and negative (r = 0.95) components, and for composite scores of nondisruptive (positive + low intensity neutral; r = 0.65) and disruptive (r= 0.85) behavior., Conclusion: This research provided support for the reliability and validity of both event and interval EBIC formats. Measurement using the EBIC taxonomy has applicability to dementia care research questions that call for either sequential analysis of social interactions or nonsequential analysis of behavioral outcomes in intervention studies.

To manage the care of increasing numbers of residents with dementia, many long-term care facilities have created special care units (SCUs) designed to meet the unique needs of this group. This article describes results of the qualitative component of a larger research project examining environment-behavior relationships in dementia care settings. Eighteen indepth interviews were conducted with 9 staff and 9 family members of SCU residents. Thematic analysis was conducted using grounded theory techniques. Participants described residents' needs in relation to both the physical and social environments. This article focuses on the five areas of need identified by participants in relation to the physical environment: safety, homelike setting, optimal stimulation, cues, and options for privacy and social interaction.