Fact 10. The Impact of DLB on Caregivers: An Often Overlooked Aspect
While much of the focus on DLB is on the patient, the impact on caregivers is an often overlooked aspect. Caregiving for a person with DLB can be physically, emotionally, and financially challenging, given the disease’s complex symptomatology and unpredictable course.
Physically, caregivers may need to assist with daily tasks, such as dressing, feeding, and toileting, particularly in the later stages of the disease. They may also need to manage challenging behaviors and ensure the patient’s safety, particularly in the context of visual hallucinations and REM Sleep Behavior Disorder.
Emotionally, the caregiver may experience stress, anxiety, and depression, stemming from the demands of caregiving and the grief of witnessing the loved one’s decline. The lack of social interaction and the need for constant vigilance can also contribute to caregiver burnout.
Financially, the costs of caregiving can be significant. These costs can include medical expenses, home modification costs, and the opportunity cost of lost work. Moreover, the long-term nature of DLB can mean that these costs accumulate over time, placing a considerable financial burden on the family. (10)
