iCARE: Identifying caregivers’ Alzheimer’s disease and related dementias experiences

About 11.2 million Americans provide unpaid care for people with Alzheimer’s Disease and Related Dementias (ADRD). The average total lifetime cost of care for a person with ADRD is $392,874. Families contribute about 70% of that amount in the form of unpaid care, medication, food, and other expenses. Providing care for a person with ADRD not only has a monetary impact, but also a negative impact on the caregivers’ health. Caregiving has been associated with increased risk for depression and anxiety, stress-related cognitive dysfunction, poor sleep, and poor health behaviors including low levels of physical activity and poor nutrition. Thus, we conducted the iCARE study, an online survey with informal female caregivers. Participants (n=299) in this study were women, at least 18 years of age, and providing at least 10 hours/week of unpaid care to a family member or friend living in the community with ADRD. Majority of the caregivers were White (72%) with an average income of <$35,000 (50.2%). Three separate analyses were conducted and are reported here. The objectives were: (1) assess caregivers’ self-reported physical activity levels, general social support, and caregivers’ preferences regarding participation in a virtual nutrition and physical activity program, (2) assess capability, opportunities, and motivation of caregivers to follow the Mediterranean-DASH diet intervention for neurodegenerative delay (MIND) diet using a COM-B model approach, and (3) assess physical activity and psychosocial differences among age-matched Latina and non-Latina White caregivers. Results from the first analysis showed that majority of caregivers were physically active (65.3%) and had moderate levels of support. Caregivers who were active compared to caregivers who were insufficiently active had higher total, family, and friend support. Caregivers were interested in receiving information about support services, safety, and the disease. They preferred short programs of two hours per week and 3 months in length. Time, cost, work, and caregiving were the main barriers to participation. Participating with family or friends, days of the program (e.g., weekends), and participating with other caregivers were the main facilitators. The second analysis showed caregivers are not consuming the MIND diet as only 8.4% of the sample report normally eating the MIND diet. Majority of the participants (63%) were slightly confident or not confident at all in cooking/eating the MIND diet. Sixty-six percent of participants reported that consuming the MIND diet would be supported by friends and family. Budget and access to food and stores were named as barriers and facilitators of the MIND diet. Other facilitators included cooking skills and family support. The third analysis showed no significant differences between Latina (n=34) and non-Latina White (n=34) caregivers on total physical activity, t (60) = -1.29, p=.203, despite Latina caregivers (M=46.431.5) reporting slightly higher total physical activity than non-Latina White caregivers (M=35.335.8). Only non-Latina White caregivers reported levels of distress (M=10.23.5), indicative of high degree of distress. Latina caregivers reported significantly higher levels of total support (M=4.81.3), and they were more likely to be in the active category compared to non-Latina White caregivers. There is a need for further physical activity and dietary pattern research. The limited and mixed information on physical activity of caregivers warrants further investigation. Social support may play a key role in the mental and physical health of caregivers, and as such, physical activity and/or diet interventions that include components of social support are needed. Interventions should consider the busy lives of caregivers by creating short interventions to promote caregiver participation. Strategies to increase capability, opportunities, and motivation for the MIND diet are needed to improve caregivers’ health.

Name thesis:degree_name

Ph.D.

Level thesis:degree_level

Dissertation

Discipline thesis:degree_discipline

Kinesiology

Grantor

University of Illinois at Urbana-Champaign

Year dc:date

2023

Author dc:creator

• Guzman, Jacqueline

Contributors dc:contributor

• Aguinaga, Susan
• Gothe, Neha
• Khan, Naiman A
• Koerner, Susan S
• Marquez, David X
• Kaushal, Navin

• Informal Caregivers
• Health Behaviors

Statement dc:rights

• Copyright 2023 Jacqueline Guzman

Language dc:language

en, eng

Handle dc:identifier

https://hdl.handle.net/2142/120510

OAI record oai:identifier

https://www.ideals.illinois.edu/oai-pmh?verb=GetRecord&metadataPrefix=etdms&identifier=oai%3Awww.ideals.illinois.edu%3A2142%2F120510