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

Abstract

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

“…The role of informal caregiving, often referred to as the essential "shadow workforce", 53 has taken on even greater prominence because of the COVID-19 pandemic, which has prioritized acute and urgent care among the professional healthcare workforce and resulted in a dearth of support for people with enduring health conditions. 18,41,54,55 Consistent with the global nature of the pandemic, here, we captured the experience of caregiving across multiple regions worldwide, while accounting for linguistic differences. Abbreviations: CI, confidence interval; LL, lower limit; UL, upper limit.…”

“…Women were recognized prepandemic to more often take on caregiver roles and take responsibility for physically and emotionally intensive care delivery, including personal care. [2][3][4][5][6]40,41,43,[65][66][67] It is possible that this may be influenced by the need for women to conform to societal gender norms, hence, prioritizing caregiving over their own needs, as well as factors related to culture, more personal approach to care delivery, and being more frequently affected by widowhood. 2,4,5,[39][40][41][42][43]68 The last explanation is correlated with age as it has also been proposed that older caregivers have higher burden levels.…”

“…We found that compared to pre‐pandemic levels, women, compared to men, caregivers experienced a significant increase in burden, loneliness, and social isolation. Women were recognized pre‐pandemic to more often take on caregiver roles and take responsibility for physically and emotionally intensive care delivery, including personal care 2–6,40,41,43,65–67 . It is possible that this may be influenced by the need for women to conform to societal gender norms, hence, prioritizing caregiving over their own needs, as well as factors related to culture, more personal approach to care delivery, and being more frequently affected by widowhood 2,4,5,39–43,68 .…”

“…[2][3][4][5][6]40,41,43,[65][66][67] It is possible that this may be influenced by the need for women to conform to societal gender norms, hence, prioritizing caregiving over their own needs, as well as factors related to culture, more personal approach to care delivery, and being more frequently affected by widowhood. 2,4,5,[39][40][41][42][43]68 The last explanation is correlated with age as it has also been proposed that older caregivers have higher burden levels. 7,8,38 The increase in care burden of caregivers of people with brain health conditions was also found to be associated with changes in care circumstances, such as the impact of COVID-19 restrictions on the ability to deliver care.…”

“…[23][24][25][26][27][28][29] This is particularly the case for those providing care for people with enduring brain conditions, due to social segregation, and cognitive and emotional deterioration of the care recipients, reflecting a dyadic impact. 4,5,[30][31][32][33][34] Pandemic-related restrictions have now exaggerated rates of loneliness and social isolation globally, 35 particularly in older people, 7,8,[36][37][38] women, 2,5,[39][40][41][42][43] and informal caregivers of people with enduring health conditions. 14,16,36,44,45 Informal caregiver status is an independent risk factor for increased loneliness during COVID-19.…”