Comparison of the Caregiving Experience of Grief, Burden, and Quality of Life in Dementia with Lewy Bodies, Alzheimer’s Disease, and Parkinson’s Disease Dementia

Article type: Research Article

Authors: Rigby, Taylor^a | Johnson, David K.^b | Taylor, Angela^c | Galvin, James E.^{d; *}

Affiliations: [a] Department of Psychology, University of Kansas, Lawrence, KS, USA | [b] Department of Neurology, University of California at Davis Health Sciences, Davis, CA, USA | [c] The Lewy Body Dementia Association, Atlanta, GA, USA | [d] Comprehensive Center for Brain Health, Department of Neurology, University of Miami Miller School of Medicine, Miami, FL, USA

Correspondence: [*] Correspondence to: James E. Galvin, MD, MPH, Comprehensive Center for Brain Health, Department of Neurology, University of Miami Miller School of Medicine, 1600 NW 10th Ave, Miami, FL 33136, USA. E-mail: [email protected].

Abstract: Background:Caregivers of persons living with Alzheimer’s disease (AD), dementia with Lewy bodies (DLB), and Parkinson’s disease dementia (PDD) are faced with numerous challenges. However, little is known about the caregiving experience across different dementias. Objective:The aims of this cross-sectional study were to examine the differences in the caregiver experience between DLB, PDD, and AD. Methods:Respondents were caregivers (N = 515; 384 DLB, 69 AD, 62 PDD) who completed a 230-question survey including sociodemographics, disease severity, neuropsychiatric symptoms, and measures of grief, burden, depression, quality of life, social support, well-being, care confidence, and mastery/self-efficacy. Results:There were no differences in caregiver age, sex, race, or education, or in the distribution of disease severity between diagnostic groups. Constructs were highly intercorrelated with positive attributes (caregiver QoL, care recipient QoL, social support, well-being, mastery and care confidence) being inversely correlated with negative attributes (burden, grief, and depression). Across dementia etiologies, no differences were reported for quality of life, social support, depression, well-being, psychological well-being, mastery, care confidence, burden or grief. Instead, we found that the caregiver’s experience was dependent on caregiver characteristics, person living with dementia characteristics and their most disturbing symptom, with behavior, personality changes, and sleep having the greatest effect on constructs. Conclusion:Caregiver ratings of psychosocial constructs may be more dependent on care recipient-caregiver dyad characteristics and the current symptoms than the underlying cause of those symptoms. Interventions to improve the caregiving experience should be developed to address specific psychosocial constructs rather than focusing on disease etiology or stage.

Keywords: Alzheimer’s disease, caregiver burden, caregiver grief, caregiving, dementia with Lewy bodies, depression, Parkinson’s disease dementia, quality of life, social support

DOI: 10.3233/JAD-201326

Journal: Journal of Alzheimer's Disease, vol. 80, no. 1, pp. 421-432, 2021