Understanding the Experiences of Patients and Dyad Care Partners in Early Alzheimer’s Disease
Elnara Fazio-Eynullayeva1, Lei Lv1, Paul Mystowski1, Caroline McKay1, Jordan Miller2, Stephanie McKee2, Tamara Al-Zubeidi2, Catherine Bottomley2, Catherine Floegel2, Richard Hyde2, Abdalla Aly1
1Novo Nordisk, 2Clarivate
Objective:
To explore and compare patient-care partner dyad experiences in early Alzheimer’s Disease (AD) including symptoms, economic and emotional burden, and treatment preferences.
Background:
Understanding the experience of patients and their care partners in early AD is crucial for identifying unmet needs in disease management and determining necessary support systems during this critical period for emerging disease-modifying therapies.
Design/Methods:
Adult patients with early AD and their care partners completed a 25-minute quantitative online survey to describe symptoms, emotional and financial burden and treatment perspectives. Survey content was informed by learnings from qualitative interviews and social media listening. Data were analyzed descriptively and comparatively using statistical pairing tests.
Results:
Survey respondents included 150 patients (female: 55%, Mean [range] age: 70.8 [55-91]) and their dyad care partners (female: 74%, Mean [range] age: 52.6 [21-97]). Typically, care partners were patients' partner/spouse (33%) or son/daughter (27%). Most frequent patient-reported difficulties were misplacing/losing belongings (68%) and difficulty concentrating (35%). These difficulties were reported by significantly more care partners than patients (p<0.05). Both groups (63% patients, 65% care partners) reported negative impacts on their emotional wellbeing. Patients more frequently reported impacts on their financial wellbeing than care partners, however employed patients and care partners reported similar levels of impact on their work or studies. About half of patients (52%) were not currently receiving any AD treatment. Stopping/slowing disease progression (84% patients, 91% care partners), treating/improving symptoms (81% patients, 85% care partners) and side effect risk (68% patients, 76% care partners) were the most important future treatment considerations reported by both groups.
Conclusions:
Early AD greatly impacts patients and care partners, with some differences in care partner perceptions and patient experiences of key symptoms and overall, emotional and financial impacts. These considerations can inform future treatment approaches.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.