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  • Writer's picturePenn FTD Center

How can a social worker help FTD patients and caregivers?



From in-home care to support groups to navigating social security benefits, Penn FTD Center social worker Kate Lietz (pictured) talks about the process of meeting with her and what sort of support an FTD patient or caregiver can expect.




  1. When would someone, a caregiver or person with FTD, meet with a social worker?

Often people meet with a social worker when they are referred by their neurologist or other health care provider. As our group’s social worker, I can help by connecting people with community resources, emotional support, family meetings, discussing advance directives, and planning for the future. If you think it might be helpful to meet with a social worker, you should bring this up with your neurologist or other health care provider.


2. What can someone expect from their first appointment?


The first neurology appointment can be overwhelming. Sometimes a family will meet with me to discuss their visit. The first time a patient meets with me, we talk about what things I can do as a social worker to help them, and we get to know each other. The goal of this first appointment is for me to get a sense of the individual needs of both patient and caregiver and figure out how I can offer support. I always encourage folks to follow-up with me on an “as-needed” basis.


3. Can you talk about the support you provide for the Penn FTD Center?


Sure! Some things I can help with…

  • Provide additional information about the diagnosis. While the doctor should provide all medical information, I can help the family better understand what they might expect to see as the disease progresses, as well as the social/behavioral aspects of the disease.

  • Teach caregiving strategies and techniques. Together we can discuss coping strategies and techniques that might help day-to-day management of behavioral and memory changes.

  • Offer support both one-on-one and through support groups. Everyone needs support as they navigate the challenges that come with this complex disease. Sometimes it is hard to find supportive people who also understand this disease. In our meetings, I always want to be that listening ear and provide support where I can. It can also help to connect with the larger early-onset dementia community. I run two support groups for caregivers for folks with early-onset dementia. I also connect patients and caregivers to in-person and virtual supportive programming.

  • Introduce advanced directives. Advance directives, such as such as a power of attorney and medical-proxy, can be challenging for families but are important to discuss and plan for early on. I help direct families to where they can get assistance completing these documents.

  • Provide resources for in-home support, adult day centers, occupational and speech therapies, and more. Many patients require a larger network of professionals. Looking online for these resources can be overwhelming – I can help direct folks to resources in their area and help get them connected with these supportive resources.

  • Guide people to the correct resources for navigating social security benefits, FMLA, waiver programs. I can help discuss these benefit programs and connect folks with agencies that can assist with their completion.

  • Facilitating family conversations about diagnosis and care planning. There are a number of supportive organizations out there to help folks navigate the challenges of living with, or caring for, someone who has FTD. Every county has an Area Agency on Aging, which can be found by simply googling your county name + area agency on aging; they can help direct patients and families to resources in their communities. I also always encourage folks to explore the Association for Frontotemporal Degeneration and Alzheimer’s Association – as both websites have digestible information and concrete tips. Additionally, they both offer in-person and virtual support groups for patients and caregivers.

If there are other specific resources folks are looking for, I am always happy to connect and help in the search!

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