A Care Partner’s Perspective: FTD Care Takes a Village

Low angle shot of a team of doctors matching puzzle pieces together in a hospital

Partners in FTD Care, Winter 2020
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By Sharon Hall, FTD Care Partner

“You have frontotemporal degeneration, or FTD. It is aprogressive disease and there are currently no treatments. Get your legal affairs in order.” Hearing these words from a doctor is a gut punch, and it does not get easier from there—I call the first year after my husband’s FTD diagnosis my “hair on fire” year. But we were fortunate that Emory Healthcare, where he was diagnosed, has an integrated memory care clinic that includes a primary palliative care clinic, which guided us through the diagnosis, offered support groups and classes, and managed all of our care needs. It even has a hotline staffed 24/7 by nurse practitioners.

Palliative care has been a tremendous resource as we face the stress, questions, and changes of FTD. It gave our family the support we needed to navigate complicated legal paperwork, advance directives, and simply understanding this disease. It offered support, both emotional and spiritual, and a team approach to decipher the complex medical system we found ourselves in.

Your primary care physician can make a referral to palliative care. If they say you are not “ready” for palliative care, you need to tell them you are, because dementia is a qualifying diagnosis for palliative care. A local palliative team will be able to refer you to support groups, therapists, and resources to help with this journey.

No one can successfully manage FTD alone. It is so necessary for care partners to get respite, learn about the disease, and take care of their own medical needs. A local palliative team can guide this process. It is the ultimate person-centered care to add to your support team.

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