Increasing number of unmanaged distressing symptoms in people living with dementia associated with family carer burden and distress following an unplanned hospital admission: A longitudinal cohort study

Background: People living with dementia (PLWD) often have high symptom burden, exacerbated by comorbidities and experience unplanned hospital admissions that increase towards the end of life. Unmanaged symptoms and unplanned hospital admissions are distressing for the person living with dementia and family carers and expensive for the healthcare system. Objective: To explore the relationship between unmanaged symptoms of PLWD following an unplanned hospital admission and carer health and wellbeing outcomes over time. Design: Prospective longitudinal cohort study. Methods: Physical, psychosocial and spiritual symptoms of the PLWD and carer burden, distress and pre-death grief were assessed over 12 months following an unplanned hospital admission. Descriptive statistics and multilevel linear regression analyses were used to examine the relationships between PLWD unmanaged symptoms and carer outcomes. Results: A total of 51 carers of PLWD with a mean age of 59.6 participated. Carer burden was significantly associated with increasing PLWD unmanaged symptoms (coefficient = 0.07, 95% CI [0.03, 0.12], p = 0.002) and agitation (coefficient = 0.08, 95%CI [0.02, 0.14], p = 0.009). Carer psychological distress showed a positive trend in its association with increasing PLWD unmanaged symptoms (coefficient = 0.07, 95% CI [−0.00, 0.13], p = 0.059) and agitation (coefficient = 0.06, 95% CI [−0.01, 0.14], p = 0.090), but both analyses did not reach statistical significance. Carer pre-death grief was not associated with PLWD symptoms or agitation. Conclusion: Identifying and addressing symptoms in PLWD following an unplanned hospital admission is essential in enhancing the wellbeing of PLWD and carers. Hospital discharge planning should incorporate carer perspectives, provide support for carer burden and distress, and ensure continuity of care to reduce symptoms and improve outcomes for both PLWD and their carers.