Genuine Smiles by Patients During Marital Interactions are Associated with Better Caregiver Mental Health.

ObjectiveProviding care for a spouse with dementia is associated with an increased risk for poor mental health. To determine whether this vulnerability in caregivers is related to the expression of positive emotion, we examined 57 patients with Alzheimer's disease and behavioral variant frontotemporal dementia and their spouses as they discussed a marital conflict.MethodFacial behavior during the discussion was objectively coded to identify Duchenne (i.e., genuine) smiles and non-Duchenne (i.e., polite) smiles. Caregiver mental health was measured using the Medical Outcomes Survey.ResultsGreater expression of Duchenne smiles by patients was associated with better caregiver mental health, even when accounting for covariates (i.e., diagnosis, patient cognitive functioning, and caregiver marital satisfaction). Greater expression of non-Duchenne smiles by patients was associated with worse caregiver health, but only when covariates were entered in the model. Expression of Duchenne and non-Duchenne smiles by caregivers was not associated with caregiver mental health.DiscussionPatients' expression of Duchenne and non-Duchenne smiles may reveal important aspects of the emotional quality of the patient-caregiver relationship that influence caregiver burden and mental health

Using personal narrative to promote person-centered values in aging, dementia, and caregiving

Personal narrative is a powerful way to include people in their care and to understand their values that drive their needs. In this paper, we describe a program designed to teach oral history to clinicians and trainees in the field of aging, dementia and caregiving. The training uses empathic listening, open-ended interviewing, and the discovery of individual values and experience to breakdown stigma and preconceptions of what it means to age with cognitive impairment. Sharing these stories of aging, dementia, and caregiving becomes an important tool to break down stereotypes, promote person-centered care, and advocate for the unheard. The profound impact of the oral history process is felt by the narrator, the interviewer and the listener. Human beings are wired for stories, and oral history taps into that power to connect us and provide better care through better understanding

Emotion Recognition and Reactivity in Persons With Neurodegenerative Disease Are Differentially Associated With Caregiver Health.

Background and objectivesMotivated by the high rates of health problems found among caregivers of persons with neurodegenerative disease, we examined associations between deficits in two aspects of care recipients' socioemotional functioning and their caregivers' health.Research design and methodsIn 2 studies with independent samples (N = 171 and 73 dyads), caregivers reported on care recipients' emotion recognition and emotional reactivity. Caregiver health was assessed using both self-report measures (Studies 1 and 2) and autonomic nervous system indices (Study 2).ResultsLower emotion recognition in care recipients was linearly associated with worse self-reported health, faster resting heart rate, and greater physiological reactivity to an acoustic startle stimulus in caregivers. These effects held after accounting for a variety of risk factors for poor caregiver health, including care recipients' neuropsychiatric symptoms. Emotional reactivity showed a quadratic association with health, such that the lowest and highest levels of emotional reactivity in care recipients were associated with lower self-reported health in caregivers.Discussion and implicationsResults shed light on the unique associations between two aspects of care recipients' emotional functioning and caregivers' health. Findings suggest potential ways to identify and help caregivers at heightened risk for adverse health outcomes

Empathic Accuracy Deficits in Patients with Neurodegenerative Disease: Association with Caregiver Depression.

OBJECTIVES:To investigate whether deficits in empathic accuracy (i.e., ability to recognize emotion in others) in patients with neurodegenerative disease are associated with greater depression in their caregivers. DESIGN:Two cross-sectional studies. SETTING:Academic medical center and research university. PARTICIPANTS:Two independent samples (N = 172, N = 63) of patients with a variety of neurodegenerative diseases and their caregivers; comparison group of healthy couples. MEASUREMENT:Patients' empathic accuracy was assessed in the laboratory using a novel dynamic tracking task (rating another person's changing emotions over time) and more traditional measures (recognizing the emotion expressed in photographs of facial expressions and by characters in films). Caregivers completed self-report inventories of depression. RESULTS:Lower empathic accuracy in patients was associated with greater depression in caregivers in both studies. In study 1, this association was found when empathic accuracy was measured using the dynamic tracking measure but not when measured using the more traditional photograph and film measures. In study 2, we found preliminary support for our theoretical model wherein lower empathic accuracy in patients is associated with increased caregiver stress (loneliness, strain, and burden), which in turn is associated with greater caregiver depression. CONCLUSIONS:Caring for a patient with deficits in empathic accuracy is associated with greater loneliness, strain, and burden for caregivers, and increased depression. Caregivers may benefit from interventions designed to compensate for the stress and interpersonal loss associated with patients' declining empathic accuracy

Memantine in patients with frontotemporal lobar degeneration: a multicentre, randomised, double-blind, placebo-controlled trial

Memantine has been used off-label to treat frontotemporal lobar degeneration (FTD). A previous 26 week open label study suggested a transient, modest benefit on neuropsychiatric symptoms as measured by the Neuropsychiatric Inventory (NPI)

Characterization of Apathy in Frontotemporal Dementia

Apathy has been defined as a deficit in drive and motivation, yet has been historically difficult to operationalize. Apathy occurs commonly in dementia and is associated with negative outcomes for both the patient and the caregiver. This study characterizes daytime activity and apathy in patients with behavioral variant (bvFTD) and semantic dementia (SD) and their family caregivers. Twenty-two patient-caregiver dyads were enrolled: 13 FTD, 9 SD and data on dementia severity, cognition, behaviors, activity, daytime sleepiness were collected. Patients and caregivers wore Actiwatches continuously for 2 weeks to record activity. Variables were examined between groups. Apathy was present in 100% of the patients with FTD and in 89% of patients with SD. Patients with FTD spent 25% of their day immobile while patients with SD spent 16% of their day inactive. FTD caregivers spent 11% of their day immobile and SD caregivers 9%. Apathy correlated with high levels of emotional distress for the caregivers in FTD, but not SD. Averages of hourly activity counts revealed the lowest amount of daytime activity was among patients with FTD followed by their caregivers, with the highest activity among SD caregivers. These results were present in patients in relatively mild disease stages. There was little evidence that factors other than apathy, for example, depression, physical impediments, or sleepiness, were contributing to the lower activity. FTD is associated with greater daytime activity disturbance (lower activity and greater numbers and duration of immobility bouts) compared to SD and the clinical manifestations of FTD produce different and more distressing impacts on the caregiver. Results from this study provide objective data contributing to an operational definition of apathy

Non-pharmacological Management of Behavioral Symptoms in Frontotemporal and Other Dementias

Worldwide prevalence of dementia is predicted to double every 20 years. The most common cause in individuals over 65 is Alzheimer's disease (AD), but in those under 65, frontotemporal dementia (FTD) is as frequent. The physical and cognitive decline that characterizes these diseases is commonly accompanied by troublesome behavioral symptoms. These behavioral symptoms contribute to significant morbidity and mortality among both patients and caregivers. Medications have been largely ineffective in managing these symptoms and carry significant adverse effects. Non-pharmacological interventions have been recommended to precede the utilization of pharmacological treatments. This article reviews the research about these interventions with special attention to the variations by etiology, especially FTD. The authors offer recommendations for improving utilization of these strategies and future research recommendations