Caregiver Concerns and Support in FTD Aly Negreira, BA MGH Frontotemporal Disorders Unit

Topics What makes FTD unique from the caregiver perspective Caregiver issues & challenges Strategies Resources MGH FTD Unit

What makes FTD unique? a dementia that can involve more than the loss of cognitive abilities changes in personality can be profound Apathy Loss of compassion Loss of sense of humor Irritability Loss of social etiquette

Topics What makes FTD unique from the caregiver perspective Caregiver issues & challenges Strategies Resources MGH FTD Unit

Caregiver issues difficult and long road to get the correct diagnosis Example - patient M.B. managing inappropriate behaviors Example - approaching strangers, inappropriate comments and jokes, rash with money managing compulsive behaviors Example - hoarding, eating too much or inedible food, pacing, excessive drinking, excessively using the bathroom

Caregiver issues patient stops working; financial issues patient can no longer fulfill household responsibilities getting the patient to stop driving, and finding alternate transportation patient is still able bodied and independent in many ways, which can make the behaviors more difficult to contain, or can add to the patient’s frustration at not being able to work and do previous activities

Caregiver/patient issues finding something for the patient to do during the day to stay busy/active finding an appropriate day program or living situation legal matters that arise from patient’s behavior

Topics What makes FTD unique Caregiver issues & challenges Strategies Resources MGH FTD Unit

Example compensatory strategies patient stops working; financial issues Contact patient can no longer fulfill household responsibilities break down tasks into manageable steps that are not overwhelming (e.g., setting the table) daily calendar/schedule to provide a list of activities and to-do items Make templates (e.g. phone, laundry)

Example compensatory strategies getting the patient to stop driving, and then need to find alternate transportation Get a driving evaluation! finding something for the patient to do during the day to stay busy/active Contact commercial sites and agencies for hiring in-home assistance Home assistants can act as tutors as well

Topics What makes FTD unique Caregiver issues & challenges Strategies Resources MGH FTD Unit

Resources FTD Support Group - located at Newton Wellsley hospital FTD literature, especially from the caregiver perspective What if it's not Alzheimer's by Lisa Radin Life in the Balance by Dr. Thomas Graboys Finding Meaning with Charles by Janet Edmunson The Banana Lady and Other Stories of Curious Behavior and Speech by Dr. Andrew Kertesz

Topics What makes FTD unique Caregiver issues & challenges Strategies Resources MGH FTD Unit

We are a clinical-research unit focused on FTD and related disorders, including Primary Progressive Aphasia (PPA), Semantic Dementia (SD), behavioral variant FTD (bvFTD), Corticobasal Degeneration Syndrome (CBD), Progressive Supranuclear Palsy (PSP), and Posterior Cortical Atrophy (PCA). The core of the program is a multidisciplinary clinic where patients are seen for evaluation, treatment, and monitoring over time. We also provide education and counseling.

MGH FTD Unit Contact the FTD-Research Unit Refer your patient to Dr. Dickerson