Impact of diagnosed (vs undiagnosed) dementia on family caregiving experiences

Abstract

Background Most older adults with Alzheimer's disease and related dementias (ADRD) do not receive a timely formal diagnosis, although formal diagnosis is linked to improved outcomes. Little is known about how a recognized formal diagnosis impacts family caregivers, who provide crucial support for older adults experiencing ADRD. Methods We analyzed 2017 National Health and Aging Trends Study and linked National Study of Caregiving data for a nationally representative sample of 724 (weighted n = 5,431,551) caregivers who assisted an older adult with probable dementia. Probable dementia was determined via previously validated composite measure. We modeled caregiver experiences as a function of recognized formal ADRD diagnosis using weighted, logistic regression and adjusting for the relevant older adult and caregiver characteristics. Results Among caregivers who assisted an older adult with probable dementia, those assisting an individual with recognized formal ADRD diagnosis were significantly more likely to report emotional difficulty (aOR: 1.77; p = 0.03) and family disagreement over the older adult's care (aOR: 5.53; p = 0.03). They were also more likely to assist with communication during doctors' visits (aOR: 9.71; p < 0.001) and to receive caregiving-related training (aOR: 2.59; p = 0.01). Conclusions While a timely ADRD diagnosis may help ensure access to needed supports for older adult and caregiver alike, diagnosis must be linked to support as they navigate resultant complex emotions. Formal diagnosis is linked to caregiver integration with, and support from, the older adult's team of health care providers; therefore, reducing existing disparities in timely diagnosis is necessary to ensure all caregivers have equal access to support.