Caregivers of People Living With Dementia, Dementia
Conditions
Keywords
Cognitive empathy, People Living With Dementia, Caregivers
Brief summary
The goal of this project is to investigate the effect of cognitive empathy training on mental health, inflammation, and immune function in caregivers of people living with dementia (PLWD), and to examine the underlying psychological and neurobiological mechanisms. The primary aim is to establish the effectiveness of cognitive empathy training in improving caregiver mental health and immune function, and in decreasing caregiver inflammation The secondary aim is to investigate the psychological and neurobiological mechanism by which cognitive empathy training improves caregiver well-being
Detailed description
In the U.S., over 7 million people currently live with Alzheimer's disease and related disorders (ADRD), a number projected to exceed 16 million by 2060. Family caregivers, numbering more than 11 million, play a crucial role in managing the care of these individuals, often bearing significant emotional and financial burdens. In 2021, the cost of care for dementia reached $593 billion, with families contributing a substantial portion. Caregivers frequently experience negative mental and physical health impacts due to chronic stress, including increased rates of depression and inflammation. Research indicates that caregiving leads to decreased immune function, with elevated Epstein-Barr virus antibody titers serving as a marker for immune health. Interventions aimed at supporting caregivers, such as psychoeducational programs, have shown benefits, particularly in enhancing coping skills. Additionally, fostering cognitive empathy in caregivers may improve their mental health and the quality of care provided to individuals with dementia, potentially mitigating some of the adverse health effects associated with caregiving stress.
Interventions
BEHAVIORALCognitive Empathy Training
Participants will engage in a mentalization activity by captioning photos of their care recipients, reflecting on what the care recipient might be thinking or feeling. Over 10 days, caregivers will take 3-5 daily pictures of their care recipient and caption each with descriptive text representing the recipient's inner voice. This task encourages caregivers to consider the care recipient's perspective and motivations behind their behavior or emotional experiences. Photos will be shared securely via encrypted email. Utilizing accessible smartphone technology, the study allows caregivers to capture and reflect on meaningful moments with their care recipients
BEHAVIORALControl Condition
In the control condition, participants will be asked to take 3-5 daily photographs of nature over 10 days. They will be asked to caption each photo with a description of what they see. This exercise will involve many of the same activities as the cognitive empathy training, except that participants will not be mentalizing or taking the the perspective of their PLWD or anyone else.
PROCEDUREPre and post intervention blood spot collection
At their initial study visit, participants will provide a blood spot sample for measurement of C-reactive protein, pro-inflammatory cytokines and Epstein-Barr virus antibody titers.
PROCEDUREPre and post intervention MRI session
In this study, caregivers will be positioned in a Siemens Trio 3T MRI scanner for functional imaging. They will view images of their care recipient care recipient, other similar care recipients care recipient, and photographs of friends or family members, pressing a button each time they see their care recipient care recipient's photo to monitor attention. The task involves viewing eight photos of four individuals with happy and neutral expressions, followed by rest periods. This sequence repeats five times, with each stimulus presented for 5 seconds and inter-trial intervals of 2, 3, or 4 seconds, totaling 11 minutes and 15 seconds. A subsequent 10-minute diffusion-weighted scan will assess brain white matter integrity, using 60 diffusion directions. All scans will be completed within 40 minutes.
Sponsors
Emory University
National Institute on Aging (NIA)
Study design
Allocation
RANDOMIZED
Intervention model
CROSSOVER
Primary purpose
OTHER
Masking
NONE
Intervention model description
Using a crossover design, caregivers will be randomized to either cognitive empathy training (n=59) or a control condition (n=59). Neuroimaging, questionnaire, and biomarker data will be collected before the 10-day training, immediately after the training, and six months after. At the 6 month visit, participants will cross over to the other treatment
Eligibility
Sex/Gender
ALL
Age
50 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
* Caregivers must live with their care recipient * Caregivers must have a Zarit Burden Scale score of 19 or higher * Caregivers must have no plans to move their care recipient to an institutional setting within the next year * Caregivers must be able to read and write English * Care recipient not in hospice * Access to a mobile phone that can take and email photographs
Exclusion criteria
* Subjects with a history of seizures or other neurological disorders, alcoholism, or any other substance abuse * Subjects with a history of psychiatric illness (excluding depression and anxiety disorders) will also be excluded * Subjects with a history of head trauma based on Survey * Subjects with MRI contra-indications
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| The State/Trait Anxiety Index (STAI) score | Baseline, immediately post-training (10-Day), 6 months post-training | The STAI State (STAI-S) is a 20-item 4-point Likert scale commonly used measure of state anxiety. Respondents report the intensity of their anxiety at that moment on a 4-point scale where 1 = not at all and 4 = very much so. Total scores range from 20 to 80 and higher scores indicate greater anxiety. |
| Perspective-taking subscale if the Interpersonal Reactivity Index (IRI) | Baseline, immediately post-training (10-Day), 6 months post-training | The Perspective-Taking scale of the IRI ranges from 0-28, and higher scores are a better outcome |
| Dyadic Relationship Scale score | Baseline, immediately post-training (10-Day), 6 months post-training | The Dyadic Relationship Scale ranges from 0-33 and higher scores are a worse outcome. |
| IL-6 levels | Baseline, immediately post-training (10-Day), 6 months post-training | Cytokine (Measure of inflammation) |
| IL-10 levels | Baseline, immediately post-training (10-Day), 6 months post-training | Cytokine (Measure of inflammation) |
| TNF-α levels | Baseline, immediately post-training (10-Day), 6 months post-training | Cytokine (Measure of inflammation) |
| Epstein-Barr virus antibody titers | Baseline, immediately post-training (10-Day), 6 months post-training | Measure of immune system functioning |
| fMRI activation within dorsomedial prefrontal cortex (DMPFC) for contrast (own person - unknown person) | Baseline, immediately post-training (10-Day), 6 months post-training | Measure of activation within one cognitive empathy ROI |
| fMRI activation within precuneus for contrast (own person - unknown person) | Baseline, immediately post-training (10-Day), 6 months post-training | Measure of activation within one cognitive empathy ROI |
| fMRI activation within temporo-parietal junction for contrast (own person - unknown person) | Baseline, immediately post-training (10-Day), 6 months post-training | Measure of activation within one cognitive empathy (region of interest) ROI |
| fMRI activation within ventrolateral prefrontal cortex for contrast (own person - unknown person) | Baseline, immediately post-training (10-Day), 6 months post-training | Measure of activation within an emotion regulation ROI |
| Zarit Burden Scale score | Baseline, immediately post-training (10-Day) , 6 months post-training | Zarit Burden Inventory (ZBI) score is a 22-item Likert scale. Each item is a statement which the caregiver is asked to endorse using a 5-point scale. Response options range from 0 (Never) to 4 (Nearly Always). Total score is obtained by summing all items endorsed. Higher scores indicate greater perceived burden. |
| The Center for Epidemiological Studies Depression (CESD) Scale score | Baseline, immediately post-training (10-Day), 6 months post-training | The CESD-R is a 20 item Likert scale scored 0-3 with somatic and psychological subscales. Total scores range from 0 to 60, with high scores indicating greater depressive symptoms. |
Countries
United States
Contacts
CONTACTJames Rilling, PhD
CONTACTKenneth Hepburn, PhD
PRINCIPAL_INVESTIGATORJames Rilling, PhD
Emory College of Arts & Sciences
PRINCIPAL_INVESTIGATORKenneth Hepburn, PhD
Emory School of Nursing
Outcome results
None listed