Many families living with FTD benefit from having help at home from a professional agency. These home care services range from medical care to help with daily tasks and companionship. While many families know that skilled nursing is available in the home, helpful therapies such as physical, occupational and speech therapy can also be performed at home. In addition to the convenience of home care, being in a familiar environment is comforting for many people with FTD.

CynthiaCynthia Clyburn, MSW, LSW works with families at the Penn FTD Center to tailor care plans to their individual needs. She notes that many of the families she works with can benefit from home care but are unsure about how to begin the process of connecting with a home care agency. Moreover, many families express concerns that home care workers will not be familiar with the special needs of their loved one’s illness, such as bvFTD and PPA, PSP, CBD and DLB. “The aides hired by agencies typically don’t have experience working with individuals with FTD, so a little education about behaviors and symptoms goes a long way,” Cynthia notes.


Some caregivers have reservations about having strangers in their home. We recommend asking the following questions when meeting with a possible home care agency to help you decide if they will be a good fit. Like any working relationship, you may have to evaluate several different agencies or individual aids to find one that works best with your family.

  • Is your agency bonded and insured?
  • What are the costs? Do you accept our insurance? Do you offer any resources for financial assistance if we need it?
  • What services are included or not included? Will we receive a written care plan before service begins?
  • Do you background check, drug screen, and check references for employees?
  • How do you make the right “match” for your clients?
  • Do the employees have a general understanding of FTD symptoms and behaviors? If not, are they willing to do research on their own to optimize care plans?
  • Can you drive my loved one and escort on appointments?
  • Can you meet their needs for companionship now, but grow with their needs as my loved one’s condition progresses?
  • Will you help my loved one stay organized, perform exercises, activities and therapies at home, and ensure they take medications on time?
  • If an aide calls out of work, will you call us to see if we need a replacement caregiver?
  • If we feel that one of your workers is not a good fit, how will you go about finding a replacement?
  • Do you offer emergency or respite care if something comes up?
  • If we have a problem, how will it be addressed and resolved? Who can we contact with requests, questions and complaints?

You might also consider the following about each agency:

  • Do the agency’s employees seem friendly and helpful? Do they have a positive attitude? Do you and your loved one feel comfortable around them?
  • Are they open to my suggestions about how best to care for my loved one? Do they appreciate her or his strengths and attempt to adjust to her or his preferences?

After you have selected a home care aide or agency, consider creating a guideline to share helpful information regarding your loved one’s care. The AFTD has a helpful worksheet that you can fill out here.

***Want more information about finding, selecting and managing care options?***

Caregiver Conference Logo Penn Shield 3 Text Cynthia Clyburn will review these tips along with additional information about navigating family and care choices at our 2019 Caregiver Conference. To sign up for the conference, please click here. If you are a patient at the Penn FTD Center, you can also get in touch with Cynthia at 215-360-0254.

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