Caregiving for Dementia: Trends pre-post onset and predictive factors of family caregiving (2002-2018)

Persons living with Alzheimer’s and other related forms of Dementia rely heavily on care from family and friends for assistance with daily activities (“family care”), but little is known about care transitions over time. We analyzed data from the Health and Retirement Study to describe caregiving patterns, from 2 years before dementia onset and up to 6 years after. Using socio-demographic data from the interview prior to dementia onset, we determine if there are significant factors that predict receipt of family care at dementia onset. We found that a third (33%) of people living with dementia were receiving help with daily activities two years prior to their first positive dementia screen and this increased to 60% during the first positive screen. Nearly all of those receiving assistance received family care. We found multiple significant predictors of receiving family care at onset, including race, education, access to private health insurance, number of activities of daily living that were difficult, number of chronic conditions, and already receiving help. This demonstrates potential gaps in dementia care, and which subpopulations may benefit most from targeted interventions for household members that do not have adequate caregiving resources or programs that provide additional formal care.