Perceptions and outcomes of an embedded Alzheimer Society First Link Coordinator in rural primary health care memory clinics.

BACKGROUND: Primary health care has a central role in dementia detection, diagnosis, and management, especially in low-resource rural areas. Care navigation is a strategy to improve integration and access to care, but little is known about how navigators can collaborate with rural primary care teams to support dementia care. In Saskatchewan, Canada, the RaDAR (Rural Dementia Action Research) team partnered with rural primary health care teams to implement interprofessional memory clinics that included an Alzheimer Society First Link Coordinator (FLC) in a navigator role. Study objectives were to examine FLC and clinic team member perspectives of the impact of FLC involvement, and analysis of Alzheimer Society data comparing outcomes associated with three types of navigator-client contacts. METHODS: This study used a mixed-method design. Individual semi-structured interviews were conducted with FLC (n = 3) and clinic team members (n = 6) involved in five clinics. Data were analyzed using thematic inductive analysis. A longitudinal retrospective analysis was conducted with previously collected Alzheimer Society First Link database records. Memory clinic clients were compared to self- and direct-referred clients in the geographic area of the clinics on time to first contact, duration, and number of contacts. RESULTS: Three key themes were identified in both FLC and team interviews: perceived benefits to patients and families of FLC involvement, benefits to memory clinic team members, and impact of rural location. Whereas other team members assessed the patient, only FLC focused on caregivers, providing emotional and psychological support, connection to services, and symptom management. Face-to-face contact helped FLC establish a relationship with caregivers that facilitated future contacts. Team members were relieved knowing caregiver needs were addressed and learned about dementia subtypes and available services they could recommend to non-clinic clients with dementia. Although challenges of rural location included fewer available services and travel challenges in winter, the FLC role was even more important because it may be the only support available. CONCLUSIONS: FLC and team members identified perceived benefits of an embedded FLC for patients, caregivers, and themselves, many of which were linked to the FLC being in person.

Utilization of Health Services Before and After Diagnosis in a Specialist Rural and Remote Memory Clinic.

Background: Limited research exists on the use of specific health services over an extended time among rural persons with dementia. The study objective was to examine health service use over a 10-year period, five years before until five years after diagnosis in the specialist Rural and Remote Memory Clinic (RRMC). Methods: Clinical and administrative health data of RRMC patients were linked. Annual health service utilization of the cohort (N = 436) was analyzed for 416 patients pre-index (57.5% female, mean age 71.2 years) and 419 post-index (56.3% female, mean age 70.8 years). Approximately 40% of memory clinic diagnoses were Alzheimer's disease (AD), 20% non-AD dementia, and 40% mild or subjective cognitive impairment or other condition. Post-index, 188 patients (44.9%) moved to permanent long-term care and were retained in the sample; 121 patients died (28.9%) and were removed yearly. Results: Over the ten-year study period, a significant increase occurred in the average number of FP visits, all-type drug prescriptions, and dementia-specific drug prescriptions (all p <.001). The highest proportion of patients hospitalized was observed one year pre-index, the highest average number of specialist visits was observed one year post-index, and both demonstrated a significant decreasing trend in the five-year post-index period (p = .037). Conclusions: A pattern of increasing FP visits and drug prescriptions over an extended period before and after diagnosis in a specialist rural and remote memory clinic highlights a need to support FPs in post-diagnostic management. Further research of longitudinal patterns in health service utilization is merited.

Base rates of low neuropsychological test scores in older adults with subjective cognitive impairment: Findings from a tertiary memory clinic.

Base rates of low scores are typically determined from normative samples, which differ from clinical samples. We examined base rates of spuriously low scores for 93 older adults with subjective cognitive impairment presenting to a memory clinic. Crawford's Monte Carlo simulation algorithm was used to estimate multivariate base rates by calculating the percentage of cognitively intact memory clinic patients who produced normed scores at or below the 5th percentile. Neuropsychological tests included: Weschler Adult Intelligence Scale block design, digit span backwards, coding, Weschler Memory Scale logical memory immediate/delayed; California Verbal Learning Test immediate/delayed memory; Brief Visuospatial Memory Test immediate/delayed; and Delis-Kaplan Executive Functioning category switching, letter number sequencing, and inhibition/switching. An estimated 33.58% of the cognitively intact memory clinic population would have one or more low scores, 14.7% two or more, 6.55% three or more, 2.94% four or more, and 1.31% 5 or more due to chance. Base rates were then applied to a subset of clinical data: all with dementia and most with MCI had low scores that exceeded the base rates. Determining base rates of spuriously low scores on a neuropsychological battery in clinical samples could reduce false positives by using empirical adjustments for expected low scores.

A Scoping Review of Care Trajectories across Multiple Settings for Persons with Dementia.

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.

What Happens to the Worried Well? Follow-Up of Subjective Cognitive Impairment.

BACKGROUND: Increasing concern around perceived neurocognitive decline is increasing the number of referrals to specialists and anxiety for patients. We aimed to explore the likelihood of the "worried well" experiencing neurocognitive decline and developing a neurological diagnosis. METHODS: A total of 166 "worried well" patients who attended the Rural and Remote Memory Clinic (RRMC) between 2004 and 2019 were included in this study. Demographic, health, social, and behavioral factors were measured at the initial visit. Mini-Mental State Examination (MMSE), Center for Epidemiologic Studies Depression Scale (CESD), and Functional Activities Questionnaire (FAQ) scores were measured and compared at initial assessment and at 1-year follow-up. MMSE scores over time were assessed with a mean follow-up of 2.95 years (SD 2.87). RESULTS: No statistically significant difference was seen in MMSE, CESD, or FAQ scores when comparing clinic day to 1-year follow-up, and no consistent pattern of MMSE score over time was seen. Of the 166 patients with subjective cognitive impairment (SCI) on initial assessment, 5 were diagnosed with Alzheimer's disease (AD) at 8.5, 3.5, 5, 3, and 1.75 years; 2 were diagnosed with MCI at 1 and 2 years; 1 was diagnosed with vascular cognitive impairment at 5 years; and 1 was diagnosed with frontotemporal dementia (FTD) at 0.5 years. CONCLUSION: The likelihood of a patient with SCI developing a neurological diagnosis is reassuringly low (9/166), but not irrelevant. This, along with the benefits of early diagnosis and treatment for dementia, leads us to believe that patients with SCI should still be seen in follow-up at least at the 1-year mark.

Family carers' narratives of the financial consequences of young onset 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 importance of organizational commitment in rural nurses' intent to leave.

AIMS: To examine determinants of intention to leave a nursing position in rural and remote areas within the next year, for Registered Nurses or Nurse Practitioners (RNs/NPs) and Licensed Practical Nurses (LPNs). DESIGN: A pan-Canadian cross-sectional survey. METHODS: The Nursing Practice in Rural and Remote Canada II survey (2014-2015) used stratified, systematic sampling and obtained two samples of questionnaire responses on intent to leave from 1,932 RNs/NPs and 1,133 LPNs. Separate logistic regression analyses were conducted for RNs/NPs and LPNs. RESULTS: For RNs/NPs, 19.8% of the variance on intent to leave was explained by 11 variables; and for LPNs, 16.9% of the variance was explained by seven variables. Organizational commitment was the only variable associated with intent to leave for both RNs/NPs and LPNs. CONCLUSIONS: Enhancement of organizational commitment is important in reducing intent to leave and turnover. Since most variables associated with intent to leave differ between RNs/NPs and LPNs, the distinction of nurse type is critical for the development of rural-specific turnover reduction strategies. Comparison of determinants of intent to leave in the current RNs/NPs analysis with the first pan-Canadian study of rural and remote nurses (2001-2002) showed similarity of issues for RNs/NPs over time, suggesting that some issues addressing turnover remain unresolved. IMPACT: The geographic maldistribution of nurses requires focused attention on nurses' intent to leave. This research shows that healthcare organizations would do well to develop policies targeting specific variables associated with intent to leave for each type of nurse in the rural and remote context. Practical strategies could include specific continuing education initiatives, tailored mentoring programs, and the creation of career pathways for nurses in rural and remote settings. They would also include place-based actions designed to enhance nurses' integration with their communities and which would be planned together with communities and nurses themselves.

Communication tools and sources of education and information: a national survey of rural and remote nurses.

OBJECTIVE: This study examined accessibility of communication tools in the workplace, use of education to update nursing knowledge, and use of information to make specific decisions in practice among registered nurses (RNs) and licensed practical nurses (LPNs) in rural and remote communities in Canada. METHODS: Data were analyzed from the cross-sectional survey, "Nursing Practice in Rural and Remote Canada II," of regulated nurses practicing in all provinces and territories of Canada. Data were collected from April 2014 to August 2015. RESULTS: The survey was completed by 3,822 of 9,622 nurses (40% response), and the present analysis was conducted with a subsample of 2,827 nurses. High-speed Internet was the most accessible communication tool, and nurses used "online/electronic education" more often than "in-person education" to update their nursing knowledge. Internet searches were used more often than several other online/electronic sources to inform decision making. Compared to LPNs, RNs reported greater workplace access to most communication tools and greater use of online/electronic education as well as information sources in online/electronic and print formats. Compared to nurses in community-based health care and hospital settings, nurses in long-term care settings reported lower access to most communication tools, lower use of online/electronic and in-person education, and lower use of online/electronic information. CONCLUSIONS: Access to continuing education and up-to-date information is important for effective patient care. This study points to a need for further research on the continuing education and information needs of rural and remote RNs and LPNs, and on their capacity to incorporate and apply new knowledge in practice.

Mistreated older adults with dementia in the home: practitioner experience and unattainable professional agency.

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.

Reliable change and minimum clinically important difference (MCID) of the Repeatable Battery for the Assessment of Neuropsychology Status (RBANS) in a heterogeneous dementia sample: Support for reliable change methods but not the MCID.

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.

Variance in caregiver burden predicted by patient behaviors versus neuropsychological profile.

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.

Cognitive and Neuropsychiatric Correlates of Functional Impairment Across the Continuum of No Cognitive Impairment to Dementia.

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.

The Worried Well? Characteristics of Cognitively Normal Patients Presenting to a Rural and Remote Memory Clinic.

INTRODUCTION: In an effort to better understand why cognitively normal patients were referred to a memory clinic, we sought to identify features of "worried well" patients to better identify those more likely to be cognitively normal. METHODS: In total, 375 consecutive patients referred by primary care practitioners to a Rural and Remote Memory Clinic were categorized into two groups based on their neurologic diagnosis, "worried well" (cognitively normal, N=81) or "other" (patients with any neurologic diagnosis, N=294). Data collected included: age, sex, years of formal education, Mini-Mental Status Examination score from initial visit, Center for Epidemiologic Studies Depression Scale score, Self-Rating of Memory Scale, alcohol consumption, marital status, hours per week of work, past medical history, sleep concerns, and family history of memory concerns. The two groups were compared using t-tests and χ2 tests. The same comparison was done between the same set of "worried well" patients (cognitively normal, N=81) and the subgroup of patients with a diagnosis of Alzheimer's disease (N=146) from the "other" group. RESULTS: Significant differences included younger age, more formal education, more frequently having previous psychiatric diagnosis and more self-reported alcohol consumption in the "worried well" group. The "worried well" and "Alzheimer's disease" comparison had the same significant differences as the "worried well" and "other" comparison. CONCLUSION: We observed a pattern of differences unfold between the "worried well" patients and those with cognitive disease. No one variable was pathognomonic of a "worried well" patient. However, taking all the above into account when evaluating a patient may help clinically.

Exploratory factor analysis and reliability of the Primary Health Care Engagement (PHCE) Scale in rural and remote nurses: findings from a national survey.

Aim The study purpose was to provide evidence of validity for the Primary Health Care Engagement (PHCE) Scale, based on exploratory factor analysis and reliability findings from a large national survey of regulated nurses residing and working in rural and remote Canadian communities. BACKGROUND: There are currently no published provider-level instruments to adequately assess delivery of community-based primary health care, relevant to ongoing primary health care (PHC) reform strategies across Canada and elsewhere. The PHCE Scale reflects a contemporary approach that emphasizes community-oriented and community-based elements of PHC delivery. METHODS: Data from the pan-Canadian Nursing Practice in Rural and Remote Canada II (RRNII) survey were used to conduct an exploratory factor analysis and evaluate the internal consistency reliability of the final PHCE Scale. Findings The RRNII survey sample included 1587 registered nurses, nurse practitioners, licensed practical nurses, and registered psychiatric nurses residing and working in rural and remote Canada. Exploratory factor analysis identified an eight-factor structure across 28 items overall, and good internal consistency reliability was indicated by an α estimate of 0.89 for the final scale. The final 28-item PHCE Scale includes three of four elements in a contemporary approach to PHC (accessibility/availability, community participation, and intersectoral team) and most community-oriented/based elements of PHC (interdisciplinary collaboration, person-centred, continuity, population orientation, and quality improvement). We recommend additional psychometric testing in a range of health care providers and settings, as the PHCE Scale shows promise as a tool for health care planners and researchers to test interventions and track progress in primary health care reform.

RBANS memory percentage retention: No evidence of incremental validity beyond RBANS scores for diagnostic classification of mild cognitive impairment and dementia and for prediction of daily function.

RBANS percentage retention scores may be useful for diagnosis, but their incremental validity is unclear. Percentage retention versus RBANS immediate and delayed memory subtests and delayed index scores were compared for diagnostic classification and for prediction of function. Data from 173 memory clinic patients with an interdisciplinary diagnosis (no cognitive impairment, amnestic mild cognitive impairment [aMCI], and dementia due to Alzheimer's disease [AD]) and complete RBANS data were analyzed. Across diagnostic contrasts, list percentage retention classification accuracy was similar to List Learning delayed recall, but below the Delayed Memory Index (DMI). Similarly, for classifying no cognitive impairment versus aMCI or dementia due to AD, story percentage retention was similar to Story Memory subtests and below the DMI. For classifying aMCI versus AD; however, Story Memory exceeded the DMI, but was similar to Story Memory subtest scores. Similarly, for prediction of function percentage retention measures did not predict variance beyond that predicted by the RBANS subtest or index scores. In sum, there is no evidence that calculation of percentage retention for RBANS adds clinical utility beyond those provided by the standard RBANS scores.

Predictors of Cognitive Decline in a Rural and Remote Saskatchewan Population With Alzheimer's Disease.

To determine the predictors of cognitive decline in a rural and remote population with Alzheimer's disease (AD), we examined the association between cognitive change and sociodemographic, clinical, and functional data at the initial day of diagnosis. Simple linear regression analysis and multiple regression analysis were used to determine the predictors of cognitive decline as measured by the difference in the Mini-Mental State Examination over 1 year. Our sample included 72 patients with AD. Age at the clinic day appointment was 75.3 (standard deviation [SD] = 7.44). History of hypertension and decreased ability to carry out activities of daily living were statistically significant and predicted greater cognitive decline at 1 year. Many previously suggested predictors of cognitive decline were not evidenced in this study. This research helps identify clinically useful predictors of decline in a rural and remote population with AD.

Exploring interest and goals for videoconferencing delivered cognitive rehabilitation with rural individuals with mild cognitive impairment or dementia.

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.

Trajectories of Depressive Symptomatology in Rural Memory Clinic Patients between Baseline Diagnosis and 1-Year Follow-Up.

BACKGROUND/AIMS: To investigate the prevalence and trajectories of depressive symptomatology at 1-year follow-up, and the severity of depressive symptoms, by dementia diagnostic group, as well as to determine the predictors of depressive symptomatology at 1-year follow-up. METHODS: In rural and remote patients of an interdisciplinary memory clinic between 2004 and 2014, 144 patients diagnosed with no cognitive impairment (NCI), mild cognitive impairment, dementia due to Alzheimer's disease (AD), or non-AD dementia completed the Center for Epidemiologic Studies of Depression Scale to assess depressive symptomatology at both time points. RESULTS: Among patients with data at both time points, persistence of depressive symptomatology at follow-up occurred in 22.2%, remission in 17.4%, incidence in 13.2%, and absence in 47.2%. The prevalence of depressive symptomatology at baseline and persistence at follow-up were significantly greater in the NCI group than in the other diagnostic groups, but there were no differences in severity. Depressive symptomatology at follow-up was independently associated with depressive symptomatology, lower independence in activities of daily living, and lower self-rating of memory at baseline, as well as with decreased independence in activities of daily living between time points. CONCLUSION: Future studies should further examine short-term postdiagnostic trajectories in depressive symptomatology in multiple dementia diagnostic groups to inform prognoses and treatment decisions.

Simultaneous temporal trends in dementia incidence and prevalence, 2005-2013: a population-based retrospective cohort study in Saskatchewan, Canada.

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.

Rural Caregivers for a Family Member With Dementia: Models of Burden and Distress Differ for Women and Men.

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.