Review methods: Studies were included that used quantitative methodologies and psychological measures to investigate experiences. The PRISMA statement was followed with inclusion criteria set a priori. A data synthesis summarised psychological constructs studied.Results: A total of 18 studies (ranging between n=16 -487 participants) met the inclusion criteria with 15 of 18 studies focused on the primary caregiver. A total of 23 standardized psychological measures were identified to assess four primary psychological constructs: Loss and grief, psychological wellbeing changes, burden and use of coping strategies.Conclusions: Small sample sizes, limited variables and reliance on observational methods affected quality. Caregivers do find ways to manage independently, but some exhibit clinically significant psychological distress that does not change over time alone and may get worse.3
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