Managing Shame: A Grounded Theory of How Stigma Manifests in Families Living With Dementia.

BACKGROUND: Alzheimer's disease and related dementias are irreversible, progressive brain disorders that slowly destroy memory, language, problem solving, and cognition. In the United States, dementia is the fifth leading cause of death for people age 65 years and older. Early diagnosis could have important benefits stigma related to dementia remains a significant impediment to diagnosis, treatment, and accessing services. While a growing body of research documents the existence and negative outcomes of stigma, less is known about how dementia-related stigma produces ill effects. AIMS: The purpose of this study was to use qualitative methods to explore how stigma manifests within families from the perspective of family caregivers of people with dementia. METHOD: Using a grounded theory approach, we interviewed 13 family caregivers of people with dementia. RESULTS: Shame emerged as the central theme experienced by family caregivers of people with dementia. Attempting to manage shame, produced three categories of responses: (1) silencing and not calling attention to the symptoms, (2) concealing the diagnosis, and (3) shunning and avoiding contact. CONCLUSIONS: Shame may be an underlying mechanism by which stigma is enacted and perpetuated, resulting in caregivers' isolation and delay in access to diagnostic and supportive services. Efforts to dispel the misconception that dementia is a shameful disease may be one way to diminish stigma.

Guilt after placement questionnaire: a new instrument to assess caregiver emotional functioning following nursing home placement.

OBJECTIVE: Guilt is a core feature of dementia caregivers' experiences following placement. This study describes and validates a new assessment tool for monitoring caregiver adjustment after placement. METHODS: Forty-six items addressing ambivalence and guilt about placement were tested with 170 dementia caregivers (M age = 56.79, SD = 13.19; 69.4% female; 54.7% adult child). RESULTS: Using principal axis factor analysis, 10 items were retained that showed acceptable internal consistency (Cronbach's alpha of 0.92). Construct validity was established in a subset of the sample (n = 53) with measures of depression (r = 0.53), burden (r = 0.48), conflict with staff (r = 0.47), and well-being (r = -0.30). CONCLUSIONS: This scale may be used to identify caregivers at risk for adjustment problems following placement and to monitor adjustment over time.

White matter integrity correlates with depressive symptomatology in temporal lobe epilepsy.

RATIONALE: White matter abnormalities occur in both temporal lobe epilepsy (TLE) and depression, but there is limited research examining the depression-white matter association in depressed individuals with TLE. This study examined the relationship between white matter integrity (WMI) and depression including the influence of age at seizure onset, in adults with TLE, TLE and depression, and depression only. METHODS: Thirty-one adults were in one of three groups: TLE without depression (TLE; n=11), TLE with depression (TLE+DEP; n=9), and depression without TLE (DEP; n=11). Participants completed structured interviews for depression diagnosis and severity. White matter integrity was estimated based on fractional anisotropy (FA) calculated in frontotemporolimbic (FTL) and non-FTL regions in the JHU DTI atlas. RESULTS: In adults with TLE (n=20), depressive symptomology was significantly correlated with FA in non-FTL regions and trended toward significance in FTL regions. These associations were found in FTL (statistically significant) and non-FTL (trended toward significance) regions in participants with childhood seizure onset but not in those with adolescent/adult seizure onset. CONCLUSIONS: Current results suggest that WMI, within FTL and non-FTL regions, are associated with depressive symptomology in adults with TLE. This association may be most notable in those with childhood-onset epilepsy. These findings could have important implications for the conceptualization and clinical care of neuropsychiatric comorbidities in TLE.

Impact of family functioning on quality of life in patients with psychogenic nonepileptic seizures versus epilepsy.

PURPOSE: To evaluate different contributions of aspects of family functioning (FF) on health-related quality of life (HRQOL) in patients with psychogenic nonepileptic seizures (PNES) versus epileptic seizures (ES). METHODS: Forty-five participants with PNES and 32 with ES completed self-report measures of FF (Family Assessment Device; FAD), HRQOL (Quality of Life in Epilepsy-31), and depression (Beck Depression Inventory-II; BDI-II). The FAD is a self-report questionnaire that assesses FF along six dimensions and general functioning. Regression analyses were used to evaluate the contribution of FF to HRQOL above and beyond the effects of disease severity and depression. KEY FINDINGS: Mean Family General Functioning fell in the unhealthy range in participants with ES or PNES. On further analysis, male participants in each group endorsed unhealthy levels of FF compared to female participants. Patients with PNES reported poorer HRQOL and greater depressive symptoms compared to ES participants; there were no gender differences in HRQOL. Regression analyses indicated that the FAD Roles subscale predicted reduced HRQOL in patients with PNES after controlling for illness duration, seizure frequency, and depression. After controlling for the same factors, Communication and Affective Involvement subscales scores predicted HRQOL in ES participants. SIGNIFICANCE: Family dysfunction was reported in both ES and PNES participants, but greater family dysfunction was experienced by male participants in both groups. Aspects of FF predicted HRQOL in patients with PNES and ES differentially. FF may be an important treatment target to enhance coping in these groups, although the treatments may need to target different aspects of FF in PNES versus ES.

A telephone-delivered psychosocial intervention improves dementia caregiver adjustment following nursing home placement.

OBJECTIVE: Study the preliminary efficacy of a telephone intervention, Family Intervention: Telephone Tracking-Nursing Home (FITT-NH) for improving dementia caregivers' adjustment following nursing home placement. METHODS: Caregivers were enrolled on average 6 weeks following the care-recipients' placement in a nursing home. Baseline assessment included self-report measures of caregiver emotional functioning, staff-caregiver interactions, placement satisfaction, health-related quality of life, and social support. Caregivers were randomly assigned to FITT-NH (n = 24) or a non-contact control condition (n = 22). Caregivers were urn randomized to balance groups on caregiver gender, relationship (spouse versus other), and facility type (dementia special care versus general). The intervention was entirely telephone-delivered in 10 contacts over 3 months. Caregivers randomized to non-contact control were not prevented from using other community-based mental health or support resources, therefore reflecting standard care. Intervention strategies were based on assessment of caregiver emotional adjustment, family functioning, staff-caregiver interactions, health, and social support. Treatment strategies are based on models of stress and coping process and family functioning. RESULTS: Groups did not differ in caregiver age, education, gender, relationship to the care recipient, length of caregiving, length of dementia diagnosis, or time since placement. Using mixed model analysis of variance, caregivers receiving FITT-NH showed a significant reduction in feelings of guilt related to placement, F(1,43) = 5.00, p < 0.05, and reported more positive perceptions of interactions with staff, F(1,43) = 4.59, p < 0.05, compared to standard care. CONCLUSION: Findings provide preliminary evidence for FITT-NH as a potentially efficacious, brief, targeted psychosocial intervention for improving caregiver emotional adjustment following nursing home placement.

A 2.5-Year Longitudinal Assessment of Naturalistic Driving in Preclinical Alzheimer's Disease.

BACKGROUND: Emerging evidence shows that cognitively normal older adults with preclinical Alzheimer's disease (AD) make more errors and are more likely to receive a marginal/fail rating on a standardized road test compared to older adults without preclinical AD, but the extent to which preclinical AD impacts everyday driving behavior is unknown. OBJECTIVE: To examine self-reported and naturalistic longitudinal driving behavior among persons with and without preclinical AD. METHOD: We prospectively followed cognitively normal drivers (aged 65 + years) with (n = 10) and without preclinical AD (n = 10) for 2.5 years. Preclinical AD was assessed using amyloid positron emission tomography (PET) with Pittsburgh Compound B. The Driving Habits Questionnaire assessed self-reported driving outcomes. Naturalistic driving was captured using a commercial GPS data logger plugged into the on-board diagnostics II port of each participant's vehicle. Data were sampled every 30 seconds and all instances of speeding, hard braking, and sudden acceleration were recorded. RESULTS: Preclinical AD participants went to fewer places/unique destinations, traveled fewer days, and took fewer trips than participants without preclinical AD. The preclinical AD group reported a smaller driving space, greater dependence on other drivers, and more difficulty driving due to vision difficulties. Persons with preclinical AD had fewer trips with any aggression and showed a greater decline across the 2.5-year follow-up period in the number of days driving per month and the number of trips between 1-5 miles. CONCLUSION: Changes in driving occur even during the preclinical stage of AD.

Persisting burden predicts depressive symptoms in dementia caregivers.

Dementia caregivers often report feeling burdened by caretaking responsibilities. Caregiver burden is correlated with caregiver depression, but the interrelationship between burden and depression requires further investigation. This study hypothesized that persisting elevated burden results in subsequent depressive symptoms. Participants were 33 dementia caregivers divided into two groups based on their Zarit Burden Interview score. The outcome variable was the total score on the Geriatric Depression Scale after 12 months. Caregivers who had persisting high burden showed significantly worse depression scores after 12 months compared to those caregivers without persisting high burden. Regression analysis controlling for baseline depression also demonstrated burden as a significant predictor of subsequent depression. These data suggest that longitudinal burden may be predictive of higher depressive symptoms; therefore, reducing burden could decrease depressive symptoms in dementia caregivers.

Premorbid relationship satisfaction and caregiver burden in dementia caregivers.

Dementia caregiver appraisal of the quality of their current and premorbid relationship with the care recipient is associated with caregiving behaviors, caregiver mood, and the decision to end home care. This study examined the contribution of premorbid relationship satisfaction to caregiver burden in dementia caregivers. Live-in dementia caregivers (n = 72) completed several psychosocial measures. Caregiver responses were used to divide them into low premorbid relationship satisfaction group (low) versus high premorbid relationship satisfaction group (high). Results indicate that premorbid relationship satisfaction is negatively associated with caregiver burden and quality of family functioning. Caregivers with high satisfaction demonstrated significantly less burden and less reactivity to memory and behavior problems, and better problem solving skills and more effective communication compared with the low caregivers. Findings are independent of length of caregiving, disease severity, care recipient daily functioning, and relationship type. Relationship satisfaction may be an important contributor to caregiver burden.

Boston naming performance distinguishes between Lewy body and Alzheimer's dementias.

Although naming impairment is common among persons with dementia, little is known about how specific error types on naming tasks may differ between dementias. Recent research has suggested that persons with dementia with Lewy bodies (DLB) have more visuospatial/visuoperceptual dysfunction than those with Alzheimer's disease (AD), which may impact their ability to correctly perceive and name objects. Our retrospective study evaluated the presence and frequency of error types among patients with DLB and AD on the Boston Naming Test (BNT). Errors on the BNT were classified into five types (i.e., visuoperceptual, semantic, phonemic, no response, and other), and performance was compared among 31 probable DLB patients and 31 probable AD patients matched for age, gender, education, and overall dementia severity. AD patients' overall performance on the BNT was significantly worse than DLB patients (p<.05). In terms of error types, DLB patients made significantly more visuoperceptual errors (p<.05) while AD patients made significantly more semantic errors (p<.001). Logistic regression revealed that the number of visuoperceptual and semantic errors significantly predicted group membership (p<.005), with an accuracy of up to 85%. Results suggest that error analysis of BNT responses may be useful in distinguishing between patients with DLB and AD.

Psychosocial predictors of dementia caregiver desire to institutionalize: caregiver, care recipient, and family relationship factors.

Several factors influence dementia caregiver desire to institutionalize; however, little is known about differences in caregivers who desire institutionalization versus those who do not. The current study compares predictors of desire to institutionalize in dementia caregivers. Seventy-two caregivers completed the Desire to Institutionalize Scale (DIS) and several psychosocial measures, including burden, dementia knowledge, self-efficacy, depression, health, care recipient daily functioning and memory/behavior problems, family functioning, and social support. Based on DIS responses, caregivers were divided into No DI versus DI groups. DI caregivers had significantly higher burden, greater dementia knowledge, more family dysfunction, and decreased social support compared with No DI caregivers. Findings emphasize the importance of caregiver and family relationship variables in DIS, suggesting potentially modifiable targets for caregiver interventions. Dementia knowledge was associated with higher DIS, suggesting that educational programs alone may not be helpful to delay institutionalization.

Religious Coping in Caregivers of Family Members With Dementia.

The degree of depression experienced by caregivers of individuals with dementia was examined in relation to religious coping strategies, religious practice, and spirituality in the framework of the stress and coping model. Caregivers of 191 persons with dementia completed the Religious Coping Scale, self-report measures of religious practices and spirituality, burden, and depression. There was no evidence that any religious coping strategy or religious practice moderated the relationship between caregiving stress and depression. Certain types of religious coping strategies had a direct effect on depression. Higher levels of religious coping working with God were associated with decreased depression, whereas higher levels of religious coping working through God were associated with increased depression. Higher burden, lower overall caregiver health rating, and worse reactions to memory and behavior problems were associated with higher levels of depression. Frequency of prayer and the importance of spirituality were weakly associated with lower levels of depression.

Recognition memory for hand positions and spatial locations in patients with Huntington's disease: differential visuospatial memory impairment?

Allocentric and egocentric memory was investigated in patients with Huntington's disease (HD) and matched controls. Patients with HD and age- and education-matched healthy normal controls (NC) were administered two visuospatial recognition memory tasks, one assessing memory for hand positions (egocentric) and the other assessing memory for spatial locations (allocentric). HD patients showed normal primacy and recency effects, but their overall performance was impaired relative to controls on both tasks. Correlation analyses indicated that HD patients' performance on the Hand Position Memory task, but not the Spatial Location Memory task, was associated with global cognitive status (Mattis Dementia Rating Scale) and disease severity (Shoulson and Fahn Rating Scale), and HD patients' performances on the two tasks were not associated. Results provide preliminary support for the role of the caudate nucleus in both allocentric and egocentric spatial memory.

Telephone-Delivered Psychosocial Intervention Reduces Burden in Dementia Caregivers.

OBJECTIVES: To examine the preliminary efficacy of Family Intervention: Telephone Tracking-Dementia (FITT-D), a multi-component intervention that is delivered in 23 telephone contacts over 12 months. METHOD: Thirty-three dementia caregivers were randomly assigned to receive either FITT-D (n =16) or standard care (n =17) using urn randomization to balance the groups on dementia severity, caregiver gender, and relationship type (spouse versus other). Inclusion criteria included formal dementia diagnosis, caregiving for at least 6 months, residing with the care recipient, and providing at least 4 hours of direct supervision per day. Master's-level therapists contacted caregivers by telephone over 12 months. Each contact followed a standardized treatment manual, involving assessment and individualized application of interventions to address mood, family functioning, social support, and health. Outcomes included Zarit Burden Interview, Revised Memory and Behavior Problem Checklist, and the Geriatric Depression Scale at baseline and 12 months (end of treatment). RESULTS: Caregivers receiving FITT-D exhibited significantly lower burden scores and less severe reactions to memory and behavior problems than caregivers in the standard care condition. CONCLUSION: Findings provide preliminary evidence for the efficacy of FITT-D, a potentially highly accessible, low-cost intervention for dementia caregivers.

Thyroid hormone levels in the prefrontal cortex of post-mortem brains of Alzheimer's disease patients.

Converging evidence suggests a possible link between thyroid state and Alzheimer's disease (AD), including a higher probability of dementia in individuals with higher TSH levels and a two-fold risk of AD in patients with hypothyroidism. Thyroid hormones modulate factors associated with AD, including amyloid precursor protein expression in the brain, suggesting a possible role for thyroid hormone in AD pathology. The present study is the first to directly evaluate brain thyroid hormone levels in AD. Triiodothyronine (T(3)) and thyroxine (T(4)) levels were measured with radioimmunoassay (RIA) in post-mortem samples of prefrontal cortex of patients with pathologically confirmed AD, including Braak stage I-II (n=8), Braak stage V-VI (n=8), and controls without any primary neurological disease (n=8). T(4) levels did not differ between groups. T(3) levels were significantly lower in Braak stage V-VI brains relative to controls, but there was no statistically significant difference between T(3) levels in Braak stage I-II versus controls. Results suggest that the conversion of T(4) to T(3) may be affected in advanced AD, perhaps due to alterations in deiodinase activity. Reduced conversion of T(4) to T(3) in AD may be associated with both AD pathology and the clinical presentation of dementia.

Impact of frontal systems behavioral functioning in dementia on caregiver burden.

Behavioral problems in the dementia patient are some of the strongest predictors of caregiver burden, though the impact of specific types of behavioral problems on burden is limited. This study investigated the contribution of frontal systems behavioral functioning (i.e., apathy, executive dysfunction, and disinhibition) on caregiver burden. Seventy-two family caregivers completed the Frontal Systems Behavior Scale and measures of mood, perceived burden, and patient ratings of functional impairment. Regression analyses indicated that frontal systems behavioral problems were predictive of caregiver burden after controlling for dementia severity and caregiver depression. Analyses of subscales revealed that executive dysfunction and disinhibition were predictors of caregiver burden. Results argue for including strategies for managing frontal systems behavioral problems, particularly executive dysfunction and disinhibition, in dementia caregiver interventions.

Unique contribution of family functioning in caregivers of patients with mild to moderate dementia.

The relationship between family functioning and dementia caregiving is complex. The present study examined the interrelationships between family functioning, caregiver burden, and patient characteristics. Participants were 72 live-in, family caregivers of patients with mild (n = 47) or moderate dementia (n = 25). Caregivers completed measures of burden, family functioning, depression, and anxiety. Ratings of patients' memory/behavior problems and patients' activities of daily living were also collected. Results indicated that higher levels of caregiver burden were significantly associated with increased caregiver depression and anxiety, greater frequency of memory and behavior problems in the dementia patient, worse activities of daily living, and poorer family functioning. Even after controlling for caregiver depression, caregiver anxiety, and frequency of memory/behavior problems in dementia patients, poorer family functioning continued to be associated with higher levels of caregiver burden. Caregivers with high levels of burden reported greater family dysfunction in communication and roles, regardless of their relationship to the patient (i.e., spouse or child). These findings suggest that including a family systems component in caregiver interventions may be beneficial in reducing burden in these very distressed individuals.

Differential impact of executive function on visual memory tasks.

Despite their common use in neuropsychological evaluation, little is known about the differential contribution of executive functioning to visual memory tests. In this study, hierarchical regression was used to determine the role of executive functioning on the Visual Reproduction subtest of the Wechsler Memory Scale--Third Edition, and the Rey-Osterrieth Complex Figure (ROCF) in a mixed neurological sample of 193 patients. Executive functioning was predictive of Visual Reproduction but not ROCF recall variables after accounting for demographic variables and global cognitive functioning. Only executive tests with a visuospatial component, the Trail-Making Test Part B and Wisconsin Card Sorting Test perseverative responses, were predictive of recall of Visual Reproduction stimuli. Organization of the ROCF was predictive of both Visual Reproduction and ROCF recall. These findings increase our understanding of the executive contribution to two common visual memory tests and may aid in the clinical interpretation of seemingly discrepant visual memory performance.

Cognitive and neuropsychiatric aspects of subclinical hypothyroidism: significance in the elderly.

The effects of overt hypothyroidism (HO) on cognition and mood are well established, and HO is considered a common cause of reversible dementia. There is now increasing evidence to suggest that subclinical hypothyroidism (ie, elevated thyroid stimulating hormone in the presence of normal thyroxine concentrations) may be a predisposing factor for depression, cognitive impairment, and dementia. Subclinical hypothyroidism is more common than HO and is most prevalent in the elderly, particularly in women. Older adults may be more vulnerable to the effects of subclinical hypothyroidism, given age-related changes to the hypothalamic-pituitary-thyroid axis, and there is an association between thyroid status and cognitive decline and dementia in the elderly. The purpose of this review is to summarize existing data on the cognitive and neuropsychiatric consequences of subclinical hypothyroidism, benefits of treatment, and recommendations for screening and monitoring in older adults.