Understanding the Service Needs and Utilization of Dementia Caregivers in Kentucky: The Role of Geographic Location and Living Arrangements

Background and Purpose

In Kentucky, around 75,000 people aged 65 and older have Alzheimer's disease and other dementia (ADRD), and this number is projected to rise to 86,000 by 2025. Most dementia patients rely on informal caregivers, such as family and friends, for support and care, with an estimated 150,000 informal dementia caregivers serving Kentucky families. These caregivers provide over 265 million hours of unpaid care, with an economic value of over $3.8 billion. The typical dementia caregiver is an adult daughter or daughter-in-law who is working full-time and balancing caregiving for both an older parent and her own children. Two important features, geographic location and living arrangements may shape dementia caregivers’ service needs and usage. Rural caregivers are less likely to utilize formal support services and report more time-demanding care situations. This study aims to understand the relation of geographic location and living arrangements to caregivers' service needs and service delivery preferences to develop intervention strategies for dementia caregivers in Kentucky.

Methods

The University of Louisville Kent School of Social Work partnered with local organizations to conduct an online statewide survey of dementia caregivers in Kentucky from September to December 2019. The survey had six parts, guided by Pearlin's caregiving stress process. Participants were recruited through newsletters, newspapers, and social media. To be eligible, participants had to be 18 years or older, living in Kentucky, and currently providing care for someone with dementia or memory problems. The survey asked about caregivers' backgrounds, stressors, service needs and preferences, resources, and effects of caregiving on well-being. Descriptive statistics and chi-square analyses were used to analyze the data.

Results

A study of 63 dementia caregivers in Kentucky found that most were White female caregivers who were spouses or adult children of their care recipients. Over 90% provided help with ADLs, and 40% spent over 40 hours per week caring for them. About half had used support groups or legal services, and just over a quarter had received education on caregiver self-care strategies. The majority were interested in learning more about counseling, care management skills, and support groups, with significant differences in interest in nursing homes and adult daycare depending on living arrangements. Less than half of dementia caregivers utilized formal care services, but over two-thirds expressed interest in learning more about them, including counseling, support groups, and caregiver education. Service needs were similar across geographic locations but differed by living arrangement, with co-residing caregivers needing more information on nursing homes, long-term care facilities, and adult day centers.

Conclusion/Implications

The study provides information on dementia caregivers' needs and service utilization in Kentucky, suggesting the need for increased community support and outreach, particularly in counseling and support groups, skills training, and education. Service needs vary by living arrangements, but outreach should focus on making services accessible to both rural and urban caregivers. Limitations include a small sample size and a lack of diversity. Future planning should focus on improving communication and delivering education and care options through a variety of formats, including telehealth.