Introduction: Frontotemporal dementia (FTD) may impose substantial psychological and social burdens on caregivers and family members that are unique from other forms of dementia due to its distinctive clinical characteristics. This systematic review investigated these impacts on caregivers and family members.
Methods: A systematic search was conducted in the PubMed, Cochrane Library and Embase databases for relevant articles published from database inception to 23 March 2023. The methodological quality of the articles was evaluated using a checklist.
Results: Thirty-six articles (six qualitative and thirty quantitative), including 5129 participants, were included in this review. Like other forms of dementia, FTD caregivers had significant caregiver burden levels and psychological impacts. Caregiver burden was associated with behavioural symptoms (e.g., apathy and disinhibition) and motor symptoms. The costs of caring for a patient with FTD were found to be higher than those for Alzheimer's disease. FTD patients often face challenges in obtaining a correct diagnosis and experience significant delays and multiple misdiagnoses. Healthcare professionals may also be less familiar with FTD than with Alzheimer's, leading to delayed diagnosis. This can cause considerable stress and deprive patients and caregivers of early intervention.
Conclusion: FTD is associated with significant costs and caregiver burden levels, and the difficulties faced by caregivers and family members can be unique and challenging in different aspects when compared to other forms of dementia. Better education about FTD for family members and healthcare professionals is required to improve the quality of life for both patients and caregivers, and more support needs to be provided at all stages of the disease.
Keywords: Caregiver burden; Cost; Family members; Frontotemporal dementia; Psychological impacts; Social impacts.
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