Julie Hviid Hahn-Pedersen1, Luis Rafael Solís Tarazona1, Tove Holm-Larsen2
1Novo Nordisk A/S, 2Health Economics, Silvi.ai
Objective:
To provide an overview of the care partner burden of Alzheimer’s disease (AD) and explore how burden increases with disease progression using a systematic literature review.
Background:
The burden of informal caregiving of people with AD is often overlooked.
Design/Methods:
A protocol was developed before searches in PubMed, Embase, PsycINFO, and Cochrane Library were run in October 2021 via the Silvi.ai-platform. Eligible studies were published in English and provided data from 2010 or later. Two reviewers screened titles and abstracts independently. A single reviewer conducted full-text analysis and data extraction, and a PRISMA overview was generated. Studies were quality-ranked using the Oxford quality grading scale.
Results:
Of 911 hits, 61 studies were relevant for data extraction. Most care partners were female. The majority of studies reported moderate-to-severe impact on care partners’ life (Zarit Burden Interview [ZBI] and the Maslach Burnout Inventory) and overall quality of life (QoL; WHO QoL Questionnaire); care partners exhibited higher levels of stress, depression, and anxiety versus controls. Females had a significantly higher care partner burden versus males (Caregiver Burden Inventory [CBI]). The higher the number, frequency, and severity of symptoms affecting patients, the more intense care partner distress (Neuropsychiatric Inventory Distress Scale). Care partners of people with severe dementia due to AD reported the greatest care partner burden (short version ZBI and CBI). There was a clear correlation between hours of care giving and Activities of Daily Living Questionnaire score. The higher the score, the more hours of caregiving.
Conclusions:
Caregiving to a person with AD is associated with emotional stress, depression, anxiety, low overall QoL, and impacted physical health. Female care partners are disproportionately affected versus males. The more severe the AD, the larger the burden. More research is required to illuminate the true health consequences for care partners of people with AD.