Dementia Caregiver Stress and Service Needs in Kentucky

Background/Purpose:

In 2019, an estimated 73,000 people were living with Alzheimer’s disease in Kentucky. This number is projected to rise to 86,000 by 2025, a 17.8% increase. Most older persons living with dementia rely on family for support and care in late life. In 2017, 272,000 caregivers of older adults with dementia in Kentucky provided 310,000,000 total hours of unpaid dementia care with the value of 4 billion dollars. The purpose of the current study is to understand the risk factors for poor dementia caregiver health and service need to develop community-based and innovative intervention-strategies for alleviating care burden.

Methods: Partnering with the University of Kentucky Cooperative Extension Service and local Alzheimer’s’ Association, we conducted a statewide online survey with dementia caregivers from September 2019 to December 2019. We assessed: (1) care recipient health and background, (2) hours and types of care provided, (3) positive and challenging aspects of care provision, (4) caregiver background and health status, and (5) service needs for caregiver support (n=85). Informed by the stress process model, we investigated risk factors for depression and poor self-rated health using ordinary least square (OLS) multiple regression analysis.

Results: The majority of the dementia caregivers (CGs) were female (88%), married (82%), and white (92%), with a mean age of 60 (SD=12, range 26-85). OLS regressions revealed that younger CGs were more likely to report lower levels of depression and better physical health than older CGs. Secondary stressors (e.g., family, emotional, and physical strains due to care) were significantly associated with higher level of CG depression.

The majority of CGs showed interests in counseling service (82%), support groups (77%), care management skills to increase ability to access health and community based services (82%), and education on caregiver self-care strategies to meet the physical and emotional needs of caregiving (77%).

Conclusions and Implications:

As the population rapidly ages, increasing numbers of families will be faced with dementia and the need for dementia care services and support. Innovative and accessible intervention strategies that focus on reducing the emotional and physical strain of dementia care are crucial. Such interventions will help reduce the negative health effects and stress of dementia care. Respite programs, counseling services, support groups that emphasize self-care strategies, and education on caregiving resources are especially needed in Kentucky.