Principal Investigators




    Contact information of lead PI



    Title of project or programme

    Burden, depression, and health in dementia caregivers: The role of emotion

    Source of funding information

    NIH (NIA)

    Total sum awarded (Euro)

    € 2,593,398.17

    Start date of award


    Total duration of award in years


    The project/programme is most relevant to:

    Alzheimer's disease & other dementias


    Acquired Cognitive Impairment... Aging... Alzheimer's Disease... Alzheimer's Disease including Alzheimer's Disease Related Dementias (AD/ADRD)... Behavioral and Social Science... Brain Disorders... Burden of Illness... Caregiving Research... Clinical Research... Clinical Research - Extramural... Dementia... Depression... Mental Health... Mind and Body... Neurodegenerative... Neurosciences... Rare Diseases

    Research Abstract

    DESCRIPTION (provided by applicant): 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.

    Lay Summary

    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.

    Further information available at:

Types: Investments > €500k
Member States: United States of America
Diseases: Alzheimer's disease & other dementias
Years: 2016
Database Categories: N/A
Database Tags: N/A

Export as PDF