Abstract

AbstractBackgroundThe burden of informal caregiving of people with Alzheimer’s Disease (AD) is often overlooked. We wanted to provide an overview of the burden of AD for care partners and to explore how the burden increases with disease progression through a systematic literature review.MethodA protocol was developed before searches in PubMed, Embase, PsycINFO, and Cochrane Library were run 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 in accordance with Oxford quality grading scale.Result911 hits were identified of which 61 studies were relevant for data extraction. Most care partners were women. The majority of studies reported moderate‐to‐severe levels of impact on care partners life (using the Zarit Burden Interview (ZBI) and the Maslach burnout inventory) and on care partners’ overall quality of life (using the WHO Quality of Life questionnaire);1,2 care partners exhibited higher levels of stress, depression, and anxiety compared to control groups.3,4,5,6 Females had significantly higher score on care partner burden than males (measured by the Caregiver Burden Inventory (CBI)).7 The higher the number, frequency and severity of symptoms affecting patients, the more intense care partner distress as measured by the Neuropsychiatric Inventory Distress Scale.8 The care partners of people with severe dementia due to AD reported the greatest care partner burden measured by the short version of the ZBI and the CBI.9,10 There was a clear correlation between hours of care giving and score of the ‘Activities of Daily Living’ questionnaire. The higher the score, the more hours of care giving.11,12,13,14 ConclusionBeing a care partner to a person with AD is often associated with emotional stress, depression, anxiety, low overall QoL as well as impact on physical health. Female care partners are disproportionally affected compared to males. The more severe the AD, the larger the burden. More research within the field is required to illuminate the true health consequences for care partners of people with AD.

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