For Healthcare Professionals: What Families Need After an FTD Diagnosis
Partners in FTD Care, Fall 2022
Download the full issue (pdf)
FTD is a “scary, huge diagnosis,” as FTD care partner Reesa notes in the interview below. Without adequate information and support, it can feel even scarier. Healthcare professionals play a significant role in ensuring that the newly diagnosed and their care partners are equipped with everything they need to navigate the FTD journey as successfully as possible. Learning about the disease, and what to expect and prepare for, is critical. Healthcare professionals can also help families learn about support groups and guide them to finding specific legal and financial planning resources. Many families gain a sense of hope and purpose from participating in clinical trials. Healthcare professionals can highlight the potential benefits of participation.
What follows is an interview with James, who is living with a primary progressive aphasia (PPA) diagnosis, and his wife and full-time care partner, Reesa. They discuss getting their diagnosis, the information and supports they received upon diagnosis, and what resources they wish they had gotten as they began their FTD journey.
James and Reesa’s Story
AFTD: When were you diagnosed with PPA and how long did it take?
James: It took two years to get fully diagnosed. Sadly, it’s getting a bit worse. I was only losing a few words at a time and now I’m losing lots of them. But thankfully my company offered disability benefits, so even though I lost my job, thank goodness we’ve had financial assistance.
Reesa: James was having some memory and sleep problems about four years ago and went to his doctor. They ended up diagnosing him with high stress, gave him some medications for that and suggested counseling. But he continued to have issues with word-finding and memory.
We then saw a neuropsychiatrist who suspected PPA and recommended UCSF [the University of California, San Francisco] to get a formal diagnosis. In April 2020 we met with UCSF, and they diagnosed him with the semantic variant of PPA. At that point, James’s work was beginning to suffer. He’s a former researcher and journalist – reading, writing, and public speaking were all part of his job. PPA affects exactly those things. We were told that James should stop working. They also told us the disease is progressive – no treatment, no cure. That certainly was a lot – it was a lot. We both had been working our whole careers, and all of a sudden everything was upside-down.
AFTD: When you were diagnosed, were you given any information about the disease?
Reesa: Our doctor and her team explained PPA because we had never heard of it. They referred us to several places – AFTD being one of them – to learn more. Then they recommended speech therapy as well as some of the clinical trials we’re now part of.
AFTD: James, did you feel adequately prepared for your PPA journey after receiving your diagnosis?
James: I definitely appreciated the insights they gave us about this disease and the things I needed to do to keep my brain healthy. I was so glad that they said to keep my brain healthy I should do lots of walking and running, because I already do those on a pretty regular basis.
Reesa: We got more resources during follow-up sessions. We meet with a neurologist every six months. They’ve talked about exercise and switching to a Mediterranean diet for brain health. They told us that James’s food preferences might change, and that he may develop different food cravings as the disease progresses.
AFTD: What do you get out of support groups that’s been helpful? Is it primarily emotional support; is it practical information?
Reesa: The most amazing thing has been just learning from other people who are going through the FTD journey, whether they are farther along or at the same place. We’re both in support groups; James is actually in more than I am. Two of the groups are really just sharing things we’ve learned and talking about how we’re coping. Another group will have doctors talk about research or new findings, or they might have a speech pathologist.
We’ve also gotten together with people in our support group socially, had potlucks and things like that. You kind of need people who understand what you’re going through. As close as your family and friends are, unless you’re actually going through it, it’s just hard to understand.
AFTD: What about managing your finances and legal matters following the diagnosis? Were you provided with any information about what you need to do, who you need to contact?
Reesa: We were given some resources that we used as an overall to-do list. But the “how” part – no, that’s harder. We became very expert at trying to navigate disability, both state and federal.
We were fortunate that we already had a financial planner, and she referred us to an estate attorney who had experience working with people who have dementia. As far as navigating the employment aspect, we’ve heard stories about people needing to contact employment attorneys if the employer is resistant to offering disability. James’s employer was wonderful about it, but we’ve heard that’s not always the case.
AFTD: What sorts of clinical trials or research are you involved in?
Reesa: We’ve been involved in a number of studies. One of them was a speech therapy trial that James is still part of. We’re part of an annual ALLFTD study. We’re also in some wearable studies, where James wears a smartwatch that tracks his sleeping and other biometrics. He just started a drug trial.
James and I are on the same page on this – our philosophy is just to say yes to everything because we want to be known by the researchers in the field. I know that you’ve got to stay visible, and you need to keep rattling cages. The enthusiasm and the care of the people in the research setting has been amazing. They’re young, they’re excited, and they want to help. They’re grateful to have a subject; we’re grateful to have that interaction. It’s been very rewarding.
AFTD: What were some resources that you didn’t get initially that, looking back, would have really helped in the early days?
Reesa: If I had one wish it would be to have a meeting postdiagnosis with the entire care team, an hour where we could take our time, ask questions, get referrals. Give us a list: “Here are some people who are familiar with PPA; here are speech pathologists who are familiar with PPA.” It would also be great to meet another couple or a family that is also living with FTD. Having a conversation with another family that has also gotten this news would be amazing: “You’ve been diagnosed too – now what?”
Healthcare professionals who understand the questions and adjustments that come with an FTD diagnosis can significantly shape a family’s FTD journey.
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