Caregiver Concerns and Support in FTD

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Caregiver Concerns and Support in FTD

• Aly Negreira, BA
• MGH Frontotemporal Disorders Unit

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Topics

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

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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

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Topics

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

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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

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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 patients
  frustration at not being able to work and do
  previous activities

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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 patients behavior

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Topics

• What makes FTD unique
• Caregiver issues challenges
• Strategies
• Resources
• MGH FTD Unit

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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)

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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

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Topics

• What makes FTD unique
• Caregiver issues challenges
• Strategies
• Resources
• MGH FTD Unit

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Resources

• FTD Support Group - located at Newton Wellsley
  hospital
• http//sites.google.com/site/ftdbostonsupportgroup
  /home
• Email ftd.boston_at_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

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Topics

• What makes FTD unique
• Caregiver issues challenges
• Strategies
• Resources
• MGH FTD Unit

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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.

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MGH FTD Unit

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