JMIR Publications

ABSTRACT

Background:

Caregivers’ self-perceived preparedness for caregiving influences care-recipients’ and caregivers’ emotional health, and care-recipients’ aging in place. Dementia’s unique, long, and progressive nature compared to other age-related illnesses, along with associated behavioral symptoms and personality changes, may cause their caregivers’ preparedness to vary significantly from that of those caring for patients with other chronic conditions.

Objective:

This study aimed to describe and compare specific domains and tasks in which family caregivers of Veterans with and without dementia reported they want to be better prepared.

Methods:

Using the Veterans Affairs’ HERO CARE Survey data, we analyzed caregivers’ responses to one open-ended question: “Out of all the tasks that you help the Veteran with, is there anything specific you would like to be better prepared for?” Response themes were deductively coded into nine domains and differences in reported domains between caregivers of care-recipients with and without dementia were compared.

Results:

732 total caregivers were included: 301 (41.1%) caregivers of Veterans with dementia, and 431 (58.9%) without. Caregivers of Veterans with and without dementia, respectively, were similar except in age (71.0 vs 66.0 years, p<0.001); being spousal caregivers [203 (69.5%) vs 242 (58.7%), p=0.004)]; working at-least part-time (15.6% vs 22.7%, p=0.003), hours of care-provision per week (94.2 vs 75.0, p<0.002), and proportion with a high burden [162 (53.8%) vs 170 (39.9%), p<0.001)], based on a Zarit Burden Interview score of 8 [1]. Veterans with dementia vs without, respectively, were older (82.4±7.8 vs 78.4±10.7, p<0.001), had higher CMS-HCC risk scores (2.6±1.6 vs 2.2±1.5, p<0.001) and higher JFI (6.4± 2.2 vs 5.3±2.4, p<0.001). Preparedness concerns among caregivers included care-coordination (22.4%), emotional and social support (19.8%), advance planning (15.8%), nursing/health monitoring (12.8%), personal care (8.9%), mobility (10.8%), household (7.9%), caregiver self-care (4.9%) and emergent situations (3.8%). Similar proportions of caregivers of Veterans with and without dementia reported preparedness needs in all domains.

Conclusions:

Majority of the caregivers did not report feeing unprepared. The preparedness needs of caregivers of Veterans with and without dementia were mostly similar. These findings can inform interventions to prepare all caregivers to support aging in place.