Genomic Burden and Dementia Caregiving: A Scoping Review

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Background: Although genomic technologies are increasingly used in dementia risk assessment, diagnosis and treatment, the impact of genomic burden on dementia caregiving remains largely unexamined.Purpose: This research investigated the impact of genomic burden on dementia caregiving and identified gaps to inform dementia care practice and policy.Methods: Three electronic databases, PubMed, APA PsycInfo, and CINAHL, were searched for peer-reviewed studies examining caregiver outcomes related to genomic burden in persons living with dementia (PLWD), published by December 2025. Two reviewers independently screened articles, resolving discrepancies by consensus. Data were extracted and thematically analyzed.Results: Of 741 studies identified, 91 underwent full-text screening. 8 studies met inclusion criteria. Genomic factors investigated included APOE (n = 6), LDLR (n = 1), ACE (n = 1), PSEN (n = 2), and MAO-A (n = 2) variants. Care recipients’ diagnoses ranged from early-onset Alzheimer’s disease to Alzheimer’s disease and related dementias and represented a wide range of disease severity. Caregivers were primarily family members. Caregiving outcomes included caregiving burden and caregiving distress.Conclusion: Though there is limited evidence to determine the impact of genomic factors on caregiving outcomes, existing studies suggest that care recipients' genetic factors influence caregiver burden indirectly through behavioral and psychological symptoms of dementia. Longitudinal studies are needed to assess the long-term impact of and the specific mechanisms by which genomic burden impacts dementia caregiving. Intervention studies integrating genetic counseling in dementia care models could clarify clinical utility as well as the psychosocial effects of genomic risk disclosure on the caregiving process.

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