“I know that my role is going to change”: a mixed-methods study of the relationship between amyloid-β PET scan results and caregiver burden

BACKGROUND: Caregiver burden consists of disease specific and perceived stressors, respectively referred to as objective and subjective indicators of burden, and is associated with negative outcomes. Previous research has found that care partners to persons living with cognitive impairment and elevated levels of amyloid-β, as measured by a positron emission tomography (PET) scan, may experience caregiver burden. AIMS: To elucidate the relationship between amyloid scan results and subjective and objective indicators of burden. METHODS: A parallel mixed-methods design using survey data from 1338 care partners to persons with mild cognitive impairment (MCI) and dementia who received an amyloid scan from the CARE-IDEAS study; and semi-structured interviews with a subsample of 62 care partners. Logistic regression models were used to investigate objective factors associated with caregiver burden. A thematic analysis of semi-structured interviews was used to investigate subjective indicators by exploring care partners' perceptions of their role following an amyloid scan. RESULTS: Elevated amyloid was not associated with burden. However, the scan result influenced participants perceptions of their caregiving role and coping strategies. Care partners to persons with elevated amyloid expected increasing responsibility, whereas partners to persons without elevated amyloid and mild cognitive impairment did not anticipate changes to their role. Care partners to persons with elevated amyloid reported using knowledge gained from the scan to develop coping strategies. All care partners described needing practical and emotional support. CONCLUSIONS: Amyloid scans can influence subjective indicators of burden and present the opportunity to identify and address care partners' support needs. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s40520-022-02314-6.