Caregiver Concerns and Support in FTD

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

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

3. 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

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

5. 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

6. 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

7. 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

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

9. Example compensatory strategies • patient stops working; financial issues • Contact http://www.elderlawanswers.com/ • 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)

10. 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

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

12. Resources • FTD Support Group - located at Newton Wellsley hospital • http://sites.google.com/site/ftdbostonsupportgroup/home • Email: ftd.boston@gmail.com • 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

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

14. 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.

15. MGH FTD Unit • Contact the FTD-Research Unit • http://www.ftd-boston.org/ • Refer your patient to Dr. Dickerson • 617-726-1728