Caring for a loved one with a neurodegenerative disease can be a meaningful part of family life. However, it can also be associated with negative outcomes for caregivers, including increased burden and reduced health and well-being. For the past 10 years, our multidisciplinary group (neurology, nursing, and psychology) has collaborated on a program project grant (AG19724) focusing on patients with frontotemporal dementia (FTD). FTD typically presents with impairments in emotional and social functioning, with many aspects of cognitive functioning initially spared. Although this constellation of symptoms can be extremely difficult for caregivers, there has been relatively little research focusing on FTD caregiving or comparing FTD caregivers with other kinds of caregiving. We propose to study the associations between patient and caregiver emotional functioning and negative caregiver outcomes (i.e., higher burden, lower health and well-being). We will recruit 200 patients with FTD, Alzheimer's disease (AD), and amyotrophic lateral sclerosis (ALS) and their caregiver spouses plus 50 neurologically normal controls and their spouses (Total N = 500). Emotional functioning will be evaluated in all participants using an observational approach that assesses emotional functioning in three domains: (a) emotional reactivity (responding to emotional stimuli), (b) emotion regulation (adjusting emotional responses to situational demands), and (c) emotional empathy (recognizing others'emotions, responding emotionally to others'emotions, helping others in need). Caregiver outcomes will be assessed using well- established measures of caregiver burden, mental and physical health, and well-being. The research addresses four specific aims:
Aim 1 : To determine how specific emotional deficits in patients contribute to negative caregiver outcomes (i.e., higher caregiver burden, lower caregiver health and well-being).
Aim 2 : To understand how caregivers'emotional functioning and select genetic and personality characteristics predict vulnerability to the negative effects of caregiving.
Aim 3 : To characterize the emotional qualities of caregiver- patient interactions in FTD, AD, and ALS.
Aim 4 : To test the efficacy of a caregiver training intervention designed to improve ability to recognize emotion in reducing negative caregiver outcomes. The proposed research is innovative in its multidisciplinary approach, translational application of basic affective science methodology to the study of dementia caregiving, focus on FTD caregiving, emphasis on emotional functioning in both patients and caregivers, and testing of an intervention for caregivers that might reduce negative caregiver outcomes and improve the caregiver-patient relationship.

Public Health Relevance

Dementias and other neurodegenerative disorders can produce profound emotional, cognitive, and functional deficits. As dementias progress, patients become increasingly dependent on caregivers, who are at significantly heightened risk for mental and physical health problems and reduced well-being.

National Institute of Health (NIH)
National Institute on Aging (NIA)
Research Project (R01)
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Nielsen, Lisbeth
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University of California Berkeley
Schools of Arts and Sciences
United States
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Holley, Sarah R; Haase, Claudia M; Levenson, Robert W (2013) Age-Related Changes in Demand-Withdraw Communication Behaviors. J Marriage Fam 75:822-836