Tiffany Chow, MD, Behavioral Neurologist, Vice President of Clinical Development at Alector, discusses a survey conducted to better understand caregivers’ experiences With frontotemporal dementia (FTD).
FTDs are a group of neurodegenerative disorders associated with shrinking of the frontal and temporal anterior lobes of the brain. Symptoms include marked changes in social behavior and personality, and/or problems with language. People with behavior changes may have:
- Disinhibition (with socially inappropriate behavior)
- Apathy and loss of empathy
- Hyperorality (eating excessive amounts of food or attempting to consume inedible things)
- Agitation
- Compulsive behavior
- And various other changes
Examples of problems with language include difficulty speaking or understanding speech. Some people with FTD also develop neuromuscular disorders such as parkinsonism or motor neuron disease. There is a genetic component to FTDs. It sometimes follows an autosomal dominant inheritance pattern, while in other cases there is a general family history of dementia or psychiatric disorders. The three main genes responsible for familial FTD are MAPT, GRN, and C9orf72. However, the genetic cause of familial FTD cannot always be identified.
Caregiver Survey
A recent caregiver survey was conducted to understand the experiences of caregivers for patients with FTD and identify gaps. Of the 90 caregivers surveyed, 44% stressed the importance of caregiver support programs but noted utilization barriers such as affordability. Services needed the most included respite services, in-home care, adult day care, and caregiver support programs. Additionally, over 33% of caregivers spend over 40 hours a week providing care to their patients, with 28% of these resigning from their jobs, 30% retiring early, and 47% decreasing working hours.
Resources
To find support and resources, caregivers may visit the Resources tab on LearnFTD.com, where they can find downloadable resources such as the doctor discussion guide and FTD Caregiver Survey Overview, stories from other caregivers, and a resource library to help them better understand the course of FTD and find caregiver or care partner support.
Medical centers which specialize in FTD can be found at the NIH website (https://www.nia.nih.gov/health/frontotemporal-disorders/what-are-frontotemporal-disorders-causes-symptoms-and-treatment#FTDcenters)
Patient advocacy groups, such as those listed below, may have resources and support groups to help connect people with others going through similar experiences:
- The Association for Frontotemporal Degeneration (AFTD)
- End the Legacy (Genetic FTD-ALS)
- CureMAPT (FTD-MAPT)
- Progranulin Information Navigator by Bluefield Project
- Rare Dementia Support (RDS) and FTD Talk in the UK
- Cure PSP (PSP)
- Lorenzo’s House (younger onset dementias)
- Family Caregiver Alliance (general)
To learn more about rare neurological conditions, visit https://checkrare.com/diseases/neurology-nervous-system-diseases/
