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.

Improving Dementia Caregiver Activation With a Brief Communication Module

“…35 Improving caregiver communication activation may also improve caregiver self-efficacy and the caregiver's ability to advocate for the care recipient. 36,37 Self-efficacy is indicative of the dementia caregiver's confidence in managing care, obtaining community-based support, and acquiring medical information. 38 When caregivers of people with cognitive impairment learn that their role includes active communication with healthcare providers, medical visits are more patient- centered.…”

“…15 Given that provider-led support is the most common source of information support for dementia caregivers, improving the quality of communication and collaboration with the healthcare team may facilitate greater access to information. 36 Dementia caregivers often have no understanding of the dementia prognosis and few recognize that dementia is a terminal disease that could benefit from palliative care. 44 Overall caregivers lack understanding about dementia disease progression.…”

2024 Alzheimer's disease facts and figures

“…Stress of Care Transitions Caregivers who helped someone with a formal diagnosis of dementia indicated more emotional difficulty and family disagreement than caregivers of individuals without a formal diagnosis. However, those caregivers of individuals with a formal dementia diagnosis were also more engaged in communication during doctors’ visits and also more likely to receive caregiver training than those who assisted someone without a diagnosis of dementia, suggesting the importance of linking support to dementia diagnostic procedures 544 Admitting a relative to a residential care facility has mixed effects on the emotional and psychological well‐being of dementia family caregivers.…”

“…However, those caregivers of individuals with a formal dementia diagnosis were also more engaged in communication during doctors’ visits and also more likely to receive caregiver training than those who assisted someone without a diagnosis of dementia, suggesting the importance of linking support to dementia diagnostic procedures. 544 Admitting a relative to a residential care facility has mixed effects on the emotional and psychological well‐being of dementia family caregivers. Some studies suggest that distress remains unchanged or even increases for some caregivers (such as spouses), but other studies have found that distress decreases.…”

“…However, those caregivers of individuals with a formal dementia diagnosis were also more engaged in communication during doctors’ visits and also more likely to receive caregiver training than those who assisted someone without a diagnosis of dementia, suggesting the importance of linking support to dementia diagnostic procedures. 544 …”