Care partner needs of people with neurodegenerative disorders: What are the needs, and how well do the current assessment tools capture these needs? A systematic meta-review.

OBJECTIVES: The burden on care partners, particularly once dementia emerges, is among the greatest of all caregiving groups. This meta-review aimed to (1) synthesis evidence on the self-reported needs of care partners supporting people living with neurodegenerative disorders; (2) compare the needs according to care partner and care recipient characteristics; and (3) determine the face validity of existing care partner needs assessment tools. METHODS: We conducted a systematic review of reviews involving a thematic synthesis of care partner needs and differences in needs according to demographic and other characteristics. We then conducted a gap analysis by identifying the themes of needs from existing needs assessment tools specific to dementia and cross-matching them with the needs derived from the thematic synthesis. RESULTS: Drawing on 17 published reviews, the identified range of needs fell into four key themes: (1) knowledge and information, (2) physical, social and emotional support, (3) care partner self-care, and (4) care recipient needs. Needs may differ according to disease trajectory, relationship to the care recipient, and the demographic characteristics of the care partner and recipient. The 'captured needs' range between 8% and 66% across all the included needs assessment tools. CONCLUSIONS: Current tools do not fully or adequately capture the self-identified needs of care partners of people living with neurodegenerative disorders. Given the high burden on care partners, which has been further exacerbated by the COVID-19 (SARS CoV-2) pandemic, the needs assessment tools should align with the self-reported needs of care partners throughout the caregiving trajectory to better understand unmet needs and target supportive interventions.

Care burden, loneliness, and social isolation in caregivers of people with physical and brain health conditions in English-speaking regions: Before and during the COVID-19 pandemic.

BACKGROUND: Public health restrictions due to the COVID-19 (SARS CoV-2) pandemic have disproportionately affected informal caregivers of people living with long term health conditions. We aimed to explore levels of care burden, loneliness, and social isolation among caregivers of people with enduring physical and brain health conditions in English-speaking regions worldwide, by investigating outcomes before and during the COVID-19 pandemic. METHODS: A cross-sectional anonymous online survey data from 2287 English-speaking caregivers of people with long term health conditions from four English-speaking regions (UK, Ireland, USA, New Zealand) included measures of care burden, loneliness, and social isolation, reported before and during the COVID-19 pandemic. Analyses were descriptive, followed by an ordinal regression model for predictors of burden. RESULTS: Compared to pre-pandemic levels, all caregivers experienced a significant increase in burden, loneliness, and isolation. Caregivers of people with both brain health and physical conditions were the most burdened and had the highest levels of loneliness and isolation compared to caregivers of people with either a brain health or physical condition only. The increase in care burden among caregivers of people with brain health challenges was associated with caregiver's gender, moderate and severe emotional loneliness, magnitude and frequency of isolation during the pandemic, and care circumstances (cohabitation with the care recipient, restrictions on the ability to provide care). CONCLUSIONS: Health and social care interventions should target caregivers' care circumstances and psychological outcomes, particularly in women, accounting for the significant additional burden of care, loneliness, and isolation resulting from pandemic-related restrictions.