Caregiver Experiences Across Three Neurodegenerative Diseases: Alzheimer's, Parkinson's, and Parkinson's With Dementia

Abstract

Objective: This article asks whether distinct caregiver experiences of Alzheimer's disease (AD), Parkinson's disease (PD), and Parkinson's disease with dementia (PDD) spouses are accounted for by disease diagnosis or by a unique combination of symptoms, demands, support, and quality of life (QOL) cross disease groups.

Method: One hundred five live-in spouse caregivers (71.4 ± 7 years) were surveyed for persons with AD (39%), PD (41%), and PDD (20%). A hierarchical cluster analysis organized caregivers across disease diagnosis into clusters with similar symptom presentation, care demands, support, and QoL.

Results: Four clusters cut across disease diagnosis. "Succeeding" cared for mild symptoms and had emotional support. "Coping" managed moderate stressors and utilized formal supports. "Getting by with support" and "Struggling" had the greatest stressors; available emotional support influenced whether burden/depression was moderate or severe. The results remain the same when diagnostic category is added to the cluster analysis.

Discussion: This study supports going beyond disease diagnosis when examining caregiver experiences.

Keywords: burden; dementia caregiving; expressive support; neurodegenerative disease; quality of life.