Caregiver Experiences and Burden in Moderate-Advanced Dementia With Lewy Bodies.
Melissa J Armstrong, Yunfeng Dai, Kaitlin Sovich, Brian LaBarre, Henry L Paulson, Susan M Maixner, Julie A Fields, Angela M Lunde, Leah K Forsberg, Bradley F Boeve, Carol A Manning, James E Galvin, Angela S Taylor, Zhigang Li
Author Information
Melissa J Armstrong: Department of Neurology (MJA, KS), University of Florida College of Medicine; Norman Fixel Institute for Neurological Diseases (MJA); Department of Biostatistics (YD, BL, ZL), University of Florida College of Medicine, Gainesville; Departments of Neurology (HLP) and Psychiatry (SMM), University of Michigan, Ann Arbor; Departments of Psychiatry and Psychology (JAF) and Neurology (AML, LKF, BFB), Mayo Clinic Rochester, MN; Department of Neurology (CAM), University of Virginia, Charlottesville; Comprehensive Center for Brain Health (JEG), Department of Neurology, University of Miami Miller School of Medicine, FL; and Lewy Body Dementia Association (AST), Lilburn, GA. ORCID
Yunfeng Dai: Department of Neurology (MJA, KS), University of Florida College of Medicine; Norman Fixel Institute for Neurological Diseases (MJA); Department of Biostatistics (YD, BL, ZL), University of Florida College of Medicine, Gainesville; Departments of Neurology (HLP) and Psychiatry (SMM), University of Michigan, Ann Arbor; Departments of Psychiatry and Psychology (JAF) and Neurology (AML, LKF, BFB), Mayo Clinic Rochester, MN; Department of Neurology (CAM), University of Virginia, Charlottesville; Comprehensive Center for Brain Health (JEG), Department of Neurology, University of Miami Miller School of Medicine, FL; and Lewy Body Dementia Association (AST), Lilburn, GA. ORCID
Kaitlin Sovich: Department of Neurology (MJA, KS), University of Florida College of Medicine; Norman Fixel Institute for Neurological Diseases (MJA); Department of Biostatistics (YD, BL, ZL), University of Florida College of Medicine, Gainesville; Departments of Neurology (HLP) and Psychiatry (SMM), University of Michigan, Ann Arbor; Departments of Psychiatry and Psychology (JAF) and Neurology (AML, LKF, BFB), Mayo Clinic Rochester, MN; Department of Neurology (CAM), University of Virginia, Charlottesville; Comprehensive Center for Brain Health (JEG), Department of Neurology, University of Miami Miller School of Medicine, FL; and Lewy Body Dementia Association (AST), Lilburn, GA. ORCID
Brian LaBarre: Department of Neurology (MJA, KS), University of Florida College of Medicine; Norman Fixel Institute for Neurological Diseases (MJA); Department of Biostatistics (YD, BL, ZL), University of Florida College of Medicine, Gainesville; Departments of Neurology (HLP) and Psychiatry (SMM), University of Michigan, Ann Arbor; Departments of Psychiatry and Psychology (JAF) and Neurology (AML, LKF, BFB), Mayo Clinic Rochester, MN; Department of Neurology (CAM), University of Virginia, Charlottesville; Comprehensive Center for Brain Health (JEG), Department of Neurology, University of Miami Miller School of Medicine, FL; and Lewy Body Dementia Association (AST), Lilburn, GA. ORCID
Henry L Paulson: Department of Neurology (MJA, KS), University of Florida College of Medicine; Norman Fixel Institute for Neurological Diseases (MJA); Department of Biostatistics (YD, BL, ZL), University of Florida College of Medicine, Gainesville; Departments of Neurology (HLP) and Psychiatry (SMM), University of Michigan, Ann Arbor; Departments of Psychiatry and Psychology (JAF) and Neurology (AML, LKF, BFB), Mayo Clinic Rochester, MN; Department of Neurology (CAM), University of Virginia, Charlottesville; Comprehensive Center for Brain Health (JEG), Department of Neurology, University of Miami Miller School of Medicine, FL; and Lewy Body Dementia Association (AST), Lilburn, GA. ORCID
Susan M Maixner: Department of Neurology (MJA, KS), University of Florida College of Medicine; Norman Fixel Institute for Neurological Diseases (MJA); Department of Biostatistics (YD, BL, ZL), University of Florida College of Medicine, Gainesville; Departments of Neurology (HLP) and Psychiatry (SMM), University of Michigan, Ann Arbor; Departments of Psychiatry and Psychology (JAF) and Neurology (AML, LKF, BFB), Mayo Clinic Rochester, MN; Department of Neurology (CAM), University of Virginia, Charlottesville; Comprehensive Center for Brain Health (JEG), Department of Neurology, University of Miami Miller School of Medicine, FL; and Lewy Body Dementia Association (AST), Lilburn, GA. ORCID
Julie A Fields: Department of Neurology (MJA, KS), University of Florida College of Medicine; Norman Fixel Institute for Neurological Diseases (MJA); Department of Biostatistics (YD, BL, ZL), University of Florida College of Medicine, Gainesville; Departments of Neurology (HLP) and Psychiatry (SMM), University of Michigan, Ann Arbor; Departments of Psychiatry and Psychology (JAF) and Neurology (AML, LKF, BFB), Mayo Clinic Rochester, MN; Department of Neurology (CAM), University of Virginia, Charlottesville; Comprehensive Center for Brain Health (JEG), Department of Neurology, University of Miami Miller School of Medicine, FL; and Lewy Body Dementia Association (AST), Lilburn, GA. ORCID
Angela M Lunde: Department of Neurology (MJA, KS), University of Florida College of Medicine; Norman Fixel Institute for Neurological Diseases (MJA); Department of Biostatistics (YD, BL, ZL), University of Florida College of Medicine, Gainesville; Departments of Neurology (HLP) and Psychiatry (SMM), University of Michigan, Ann Arbor; Departments of Psychiatry and Psychology (JAF) and Neurology (AML, LKF, BFB), Mayo Clinic Rochester, MN; Department of Neurology (CAM), University of Virginia, Charlottesville; Comprehensive Center for Brain Health (JEG), Department of Neurology, University of Miami Miller School of Medicine, FL; and Lewy Body Dementia Association (AST), Lilburn, GA. ORCID
Leah K Forsberg: Department of Neurology (MJA, KS), University of Florida College of Medicine; Norman Fixel Institute for Neurological Diseases (MJA); Department of Biostatistics (YD, BL, ZL), University of Florida College of Medicine, Gainesville; Departments of Neurology (HLP) and Psychiatry (SMM), University of Michigan, Ann Arbor; Departments of Psychiatry and Psychology (JAF) and Neurology (AML, LKF, BFB), Mayo Clinic Rochester, MN; Department of Neurology (CAM), University of Virginia, Charlottesville; Comprehensive Center for Brain Health (JEG), Department of Neurology, University of Miami Miller School of Medicine, FL; and Lewy Body Dementia Association (AST), Lilburn, GA. ORCID
Bradley F Boeve: Department of Neurology (MJA, KS), University of Florida College of Medicine; Norman Fixel Institute for Neurological Diseases (MJA); Department of Biostatistics (YD, BL, ZL), University of Florida College of Medicine, Gainesville; Departments of Neurology (HLP) and Psychiatry (SMM), University of Michigan, Ann Arbor; Departments of Psychiatry and Psychology (JAF) and Neurology (AML, LKF, BFB), Mayo Clinic Rochester, MN; Department of Neurology (CAM), University of Virginia, Charlottesville; Comprehensive Center for Brain Health (JEG), Department of Neurology, University of Miami Miller School of Medicine, FL; and Lewy Body Dementia Association (AST), Lilburn, GA. ORCID
Carol A Manning: Department of Neurology (MJA, KS), University of Florida College of Medicine; Norman Fixel Institute for Neurological Diseases (MJA); Department of Biostatistics (YD, BL, ZL), University of Florida College of Medicine, Gainesville; Departments of Neurology (HLP) and Psychiatry (SMM), University of Michigan, Ann Arbor; Departments of Psychiatry and Psychology (JAF) and Neurology (AML, LKF, BFB), Mayo Clinic Rochester, MN; Department of Neurology (CAM), University of Virginia, Charlottesville; Comprehensive Center for Brain Health (JEG), Department of Neurology, University of Miami Miller School of Medicine, FL; and Lewy Body Dementia Association (AST), Lilburn, GA. ORCID
James E Galvin: Department of Neurology (MJA, KS), University of Florida College of Medicine; Norman Fixel Institute for Neurological Diseases (MJA); Department of Biostatistics (YD, BL, ZL), University of Florida College of Medicine, Gainesville; Departments of Neurology (HLP) and Psychiatry (SMM), University of Michigan, Ann Arbor; Departments of Psychiatry and Psychology (JAF) and Neurology (AML, LKF, BFB), Mayo Clinic Rochester, MN; Department of Neurology (CAM), University of Virginia, Charlottesville; Comprehensive Center for Brain Health (JEG), Department of Neurology, University of Miami Miller School of Medicine, FL; and Lewy Body Dementia Association (AST), Lilburn, GA. ORCID
Angela S Taylor: Department of Neurology (MJA, KS), University of Florida College of Medicine; Norman Fixel Institute for Neurological Diseases (MJA); Department of Biostatistics (YD, BL, ZL), University of Florida College of Medicine, Gainesville; Departments of Neurology (HLP) and Psychiatry (SMM), University of Michigan, Ann Arbor; Departments of Psychiatry and Psychology (JAF) and Neurology (AML, LKF, BFB), Mayo Clinic Rochester, MN; Department of Neurology (CAM), University of Virginia, Charlottesville; Comprehensive Center for Brain Health (JEG), Department of Neurology, University of Miami Miller School of Medicine, FL; and Lewy Body Dementia Association (AST), Lilburn, GA. ORCID
Zhigang Li: Department of Neurology (MJA, KS), University of Florida College of Medicine; Norman Fixel Institute for Neurological Diseases (MJA); Department of Biostatistics (YD, BL, ZL), University of Florida College of Medicine, Gainesville; Departments of Neurology (HLP) and Psychiatry (SMM), University of Michigan, Ann Arbor; Departments of Psychiatry and Psychology (JAF) and Neurology (AML, LKF, BFB), Mayo Clinic Rochester, MN; Department of Neurology (CAM), University of Virginia, Charlottesville; Comprehensive Center for Brain Health (JEG), Department of Neurology, University of Miami Miller School of Medicine, FL; and Lewy Body Dementia Association (AST), Lilburn, GA. ORCID
Background and Objectives: Dementia with Lewy bodies (DLB) is a common degenerative dementia, but research on caregiver experiences in late stages is lacking. This study aimed to investigate the caregiving experience in moderate-advanced DLB to identify opportunities for improving care and support. Methods: Dyads of individuals with moderate-advanced DLB and their primary informal caregivers were recruited from specialty clinics, advocacy organizations, and research registries. The study collected demographics, disease-related measures, and measures of the caregiver experience relating to caregiver support, burden, grief, self-efficacy, depression, quality of life, and coping. Spearman correlation coefficients and Wilcoxon rank-sum tests evaluated the relationships of caregiver measures with patient and caregiver variables with adjustments for multiple testing. Results: Caregivers (n = 143) were mostly women (83.5%) and spouses (84.7%) (mean age 68 years; range 37-85). Almost 40% reported high burden and/or depression. Caregiver measures correlated with fluctuation and behavioral symptom severity, sleepiness, and autonomic symptoms of the person with DLB. Higher burden correlated with worse caregiver quality of life, higher depression, and grief. Greater self-efficacy, social support, and resilience correlated with lower caregiver burden. The most frequently reported caregiver concerns were being unable to plan for the future, having to put the needs of the person with DLB ahead of the caregiver's own needs, and worry that the person with DLB would become too dependent on the caregiver, but many additional concerns were endorsed. Caregivers were generally satisfied with medical team support. The lowest reported satisfaction related to information regarding disease progression and how well medical teams shared information with each other. Discussion: Various patient-related and caregiver-related factors influence caregiver experiences in moderate-advanced DLB. Clinicians can target caregiver needs by providing support resources and DLB education and treating bothersome patient symptoms. Future research should investigate what interventions can modify and improve caregiver experiences in advanced DLB and identify therapeutics for patient symptoms currently without adequate treatments (e.g., fluctuations, daytime sleepiness). Trial Registration Information: NCT04829656.
