The social and economic burden of frontotemporal degeneration.

OBJECTIVE: To quantify the socioeconomic burden of frontotemporal degeneration (FTD) compared to previously published data for Alzheimer disease (AD). METHODS: A 250-item internet survey was administered to primary caregivers of patients with behavioral-variant FTD (bvFTD), primary progressive aphasia, FTD with motor neuron disease, corticobasal syndrome, or progressive supranuclear palsy. The survey included validated scales for disease staging, behavior, activities of daily living, caregiver burden, and health economics, as well as investigator-designed questions to capture patient and caregiver experience with FTD. RESULTS: The entire survey was completed by 674 of 956 respondents (70.5%). Direct costs (2016 US dollars) equaled $47,916 and indirect costs $71,737, for a total annual per-patient cost of $119,654, nearly 2 times higher than reported costs for AD. Patients ≥65 years of age, with later stages of disease, and with bvFTD correlated with higher direct costs, while patients <65 years of age and men were associated with higher indirect costs. An FTD diagnosis produced a mean decrease in household income from $75,000 to $99,000 12 months before diagnosis to $50,000 to $59,999 12 months after diagnosis, resulting from lost days of work and early departure from the workforce. CONCLUSIONS: The economic burden of FTD is substantial. Counting productivity-related costs, per-patient costs for FTD appear to be greater than per-patient costs reported for AD. There is a need for biomarkers for accurate and timely diagnosis, effective treatments, and services to reduce this socioeconomic burden.

When traditional care falls short. Caring for people with atypical presentations of cortical dementia.

1 People with chronic dementias receive care and support with programs designed for people with Alzheimer's disease, meaning a significant minority of patients will not benefit as a result of atypical or unusual presentations of cortical decline. 2 When patients have atypical presentations of dementia, nurses must recognize the unusual symptoms, assess care needs, and develop appropriate management strategies. 3 For patients with chronic dementia, individualized care planning includes knowledge of: 1) the patient's culture; 2) their past habits, activities, and preferences; 3) their remaining abilities; 4) the regions of the brain affected, histopathology, and size of the affected area; 5) the usual trajectory for the disease type; and 6) external demands. 4 Conducting research on assessment and care of people with atypical presentations of dementia is very difficult because of their rare nature and lack of recognition by health practitioners who may diagnose the patients with Alzheimer's disease.