Dementia Care Research and Psychosocial Factors

Area of Science:

• Neuroscience
• Public Health
• Gerontology

Background:

• Alzheimer's disease (AD) prevalence is higher in Puerto Rico (PR) than the U.S. mainland.
• Familial caregiving is culturally prevalent in PR, significantly impacting caregiver health.
• Puerto Rican caregivers report disproportionately high rates of fair or poor health.

Purpose of the Study:

• To explore the experiences of familial caregivers of AD patients in PR.
• To identify factors contributing to caregiver burden.
• To suggest policy and care delivery improvements for AD caregivers.

Main Methods:

• Conducted 51 in-person interviews with AD patients and familial caregivers in PR.
• Recorded and transcribed interviews verbatim.
• Analyzed data using a directed content approach with ensured interrater reliability.

Main Results:

• Caregivers reported significant burdens from constant demands and inadequate respite, worsened by AD progression.
• Lack of adult day centers, high out-migration, and inconsistent support services contributed to burden.
• Challenges included healthcare access/coordination, financial strain, unpreparedness, and unmet mental health needs.

Conclusions:

• Familial caregivers of AD patients in PR experience extreme burdens requiring enhanced support.
• Policies must integrate caregiver well-being, improve respite, healthcare access, and provide training.
• A family-centered approach addressing both patient and caregiver needs is essential.