Megan E. O’Connell

Development and evaluation of a telehealth videoconferenced support group for rural spouses of individuals diagnosed with atypical early-onset dementias

Atypical and early-onset dementias can be particularly problematic for family caregivers, and support groups aimed at memory loss and Alzheimer’s disease are not always helpful. Unfortunately, little has been developed specifically for caregivers of individuals with atypical dementias such as the frontotemporal dementias. Compounding the lack of access to interventions targeted specifically at caregivers of individuals with atypical and early-onset dementias are the unique needs of rural caregivers. Due to the relative infrequency of these particular dementias and the large geographical distances between rural caregivers, technology-facilitation is required for any group-based intervention. This paper describes the development of a secure telehealth videoconferenced support group for rural spouses of individuals with atypical and early-onset dementias. In addition, we provide preliminary evidence of effectiveness and describe a template for future groups based on the key therapeutic aspects of this novel technology-facilitated intervention.

Degree of Rurality is not Related to Dementia Caregiver Distress, Burden, and Coping in a Predominantly Rural Sample

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.

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.

Factor Analysis of the 12-Item Zarit Burden Interview in Caregivers of Persons Diagnosed With 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.

Predictors of Completion of Executive-Functioning Tasks in a Memory Clinic Dementia Sample.

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.

Availability and Primary Health Care Orientation of Dementia-Related Services in Rural Saskatchewan, Canada.

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.

Dementia-related work activities of home care nurses and aides: Frequency, perceived competence, and continuing education priorities

ABSTRACT An understanding of the specific dementia learning needs of home care staff is needed to plan relevant continuing education (CE) programs and supports. The study’s objective was to examine frequency and perceived competence in performing 20 dementia-related work activities, and identify CE priorities among home care staff. A cross-sectional survey of all home care staff in a primarily rural health region was used to gather data. Of 111 eligible staff, 82 participated (41 nursing aides, 41 nurses/case managers). To explore the relationship between activity frequency (F) and competence (C), the proportion of nurses and aides in four quadrants for each activity was examined: (1) low F-low C, (2) low F-high C, (3) high F-low C, and (4) high F-high C. Nurses/case managers were significantly more likely than aides to regularly perform 11 activities and to report high competence in 9 activities (p < .05); aides were more likely to assist with two activities (personal care and daily living activities). Thus, nurses/case managers performed a broader range of activities and reported higher competence overall. The top CE topic for both groups was recognizing differences between dementia subtypes, but rankings for most activities varied by group. Aides’ CE priorities indicated a desire to develop competence in low frequency-low competence activities, suggesting an expanded role in supporting dementia patients and their families. Nurses’ CE priority topics were in the high F-high C quadrant, indicating a need to further develop competence in these activities. Findings have implications for planning CE programming for home care providers.

Coping with cognitive impairment and dementia: Rural caregivers' perspectives.

Caregiving in a rural context is unique, but the experience of rural caregivers is understudied. This paper describes how rural caregivers cope with caring for a loved one diagnosed with mild cognitive impairment or dementia using qualitative description to generate a low-inference summary of a response to an open-ended question. This approach allowed these rural caregivers to describe their positive experiences in addition to the more commonly explored caregiver experiences related to stress. Analyses of coping revealed use of social support, engaging in relaxing and physical activity, and cognitive reframing. In addition, caregivers reported strong faith and religiosity, and to a lesser frequency behavioral changes, checking in with the person with dementia via telephone, and joint activity. Predominantly, these methods reflect approach-based strategies. The current data suggest that these caregivers manage well and adopt adaptive coping strategies to meet the demands of the caregiving role.

An evidence-based approach to the creation of normative data: base rates of impaired scores within a brief neuropsychological battery argue for age corrections, but against corrections for medical conditions

Abstract Objective: We detail a new approach to the creation of normative data for neuropsychological tests. The traditional approach to normative data creation is to make demographic adjustments based on observations of correlations between single neuropsychological tests and selected demographic variables. We argue, however, that this does not describe the implications for clinical practice, such as increased likelihood of misclassification of cognitive impairment, nor does it elucidate the impact on decision-making with a neuropsychological battery. Method: We propose base rate analyses; specifically, differential base rates of impaired scores between theoretical and actual base rates as the basis for decisions to create demographic adjustments within normative data. Differential base rates empirically describe the potential clinical implications of failing to create an appropriate normative group. We demonstrate this approach with data from a short telephone-administered neuropsychological battery given to a large, neurologically healthy sample aged 45–85 years old. We explored whether adjustments for age and medical conditions were warranted based on differential base rates of spuriously impaired scores. Conclusions: Theoretical base rates underestimated the frequency of impaired scores in older adults and overestimated the frequency of impaired scores in younger adults, providing an evidence base for the creation of age-corrected normative data. In contrast, the number of medical conditions (numerous cardiovascular, hormonal, and metabolic conditions) was not related to differential base rates of impaired scores. Despite a small correlation between number of medical conditions and each neuropsychological variable, normative adjustments for number of medical conditions does not appear warranted. Implications for creation of normative data are discussed.

The bereavement experience of spousal caregivers to persons with dementia: Reclaiming self

Spouses of persons living with dementia both anticipate future loss and grieve for multiple losses occurring with caregiving and this ultimately influences their bereavement experience. Little research has been conducted regarding the bereavement experience in the caregiving journey with dementia and what does exist is mostly quantitative in nature. The purpose of this study is to describe the bereavement experience of spousal caregivers (n = 10) utilizing Thorne’s interpretive description. Thematic analysis revealed the features and facilitators of the bereavement process for spousal caregivers to persons with dementia. The unique contribution of this study to the dementia literature is the finding that the overall process of reclaiming self is significant to the bereavement journey. Future work should investigate identity as understood by spousal caregivers to persons with dementia, and further explore the processes, facilitators, and barriers to healthy bereavement in this population.