“The Most Difficult ‘Job’ There Is” – Characteristics and Challenges of Unpaid Caregivers of Persons with Alzheimer’s and Related Dementias in Texas

Abstract

Objective: To understand the conditions and impact on caregivers providing unpaid care to persons with Alzheimer’s disease or related dementias in Texas. Methods: A cross-sectional survey consisting of 29 questions (n = 358) was distributed to unpaid caregivers (UCs) using snowball sampling. Results: Respondents were predominantly female (81.7%), age 55+ (83.6%), retired (55.2%), white (83.9%), and were the primary care provider to the care recipient (CR). Caregivers averaged 68 hours/week of care. Numerous challenges were reported, including increased emotional stress (62.3%), negative impact on work (61.7%), declining physical health (62.0%), and increased financial stress (34.1%). Respondents were asked to provide open-ended feedback regarding their caregiver experiences. Topics include emotional and physical health, caregiving’s impact on their professional and personal lives, and the availability of resources. Discussion: Caregiving can be extremely burdensome to a caregiver’s health, work, and finances. Future studies focusing on the challenges and needs among UCs in Texas are warranted.

Keywords

• Alzheimer’s disease
• caregiving
• unpaid care
• dementia care