Melissa Fisher, AFTD Ambassador and a senior strategic marketing consultant at Kaiser Permanente Northwest, shared the realities of being an FTD care partner while emphasizing emphasized the need for better dementia care pathways in an episode of VIE Healthcare’s podcast.

Caregiving is difficult; most family care partners are unpaid, untrained, and often overwhelmed. Yet, care partners for those with FTD and other dementias often find that the healthcare system isn’t adequately prepared for them. As Fisher shares in the podcast, the need for care partners is growing, and the field that care partners face is much different than it has been traditionally.

“Kids move from rural towns; they’re going to other parts of the country to make their way,“ Fisher said. “They aren’t staying in the homestead anymore. But I think back another generation, and my great-grandmother lived with my grandparents all under one roof. They helped with the raising of the children. So it just feels like there’s been this shift in who’s caring for who. People are living longer, but not necessarily better.”

Fisher notes that time, cost, personal well-being, and access to training and resources are the major obstacles facing modern care partners such as herself:

• Time is a luxury that many care partners have a finite supply of. Fisher and many other care partners have careers and other aspects of their lives that demand their time in addition to their caregiving duties. They have little to no help to stretch their time further.
• Costs related to dementia care are prohibitive for most Americans. If a family is not wealthy enough to afford care out of pocket, support is largely unavailable unless they can also qualify for Medicare or Medicaid.
• Because so many care partners are busy around the clock, personal well-being is often pushed to the wayside and can result in the mental and physical health of care partners being compromised. Fisher admits to having been so overwhelmed at points to have broken out in “stress hives.”
• As most care partners for people with FTD are family members, they lack access to training and resources to better prepare them for their role. As Fisher highlights, the role of a care partner is one that people are seldom prepared for, and there needs to be more training and educational resources available to help them.

While there are numerous ways hospitals and care providers can better meet the needs of families affected by FTD, Fisher notes that a significant way for medical professionals to help families is to treat them as a unit. As she highlights in the podcast, it isn’t usually preventative appointments that bring families affected by FTD into the system; it’s a crisis caused by the onset of symptoms. Often, families in crisis haven’t had time to discuss long-term care, legal and financial planning, and how to re-adjust their everyday lives.

By treating families as a unit, medical professionals can help guide them through these discussions and get families involved to ensure the best level of care for their diagnosed loved one. In the podcast, Fisher shares how being involved in her aunt’s care made a world of difference to her.

“The assigned hospitalist who had just come on for his next long shift, we got really lucky there, so we had one hospitalist at the beginning, which made it much better with me,” Fisher said. “He addressed my concerns. He huddled [with me]. He called me proactively. He even called me and asked me questions like, ‘What do you think?’ I’m getting goosebumps just thinking about those conversations where he’s like, ‘What do you think we should do? What do you think about the medications?’ I wish more asked me for opinions and thoughts; I know not everyone is as involved.”

The best way for healthcare providers to improve, Fisher says, is to ask care partners and family members about their experiences.“We’re not asking caregivers,” she said. “I find that interesting because my mom in the hospital can’t clearly even remember that she broke her hip or femur, and yet you’re now sending her an after-patient survey.Then I’m looking at it, and I ask her, and she’s like, ‘I don’t know. I was on so many medications.’ Are you getting what you need for the process to improve?”

Melissa Fisher is an inaugural member of AFTD’s Ambassador program, joining during the program’s founding in 2019. To meet AFTD’s Ambassadors and learn about their work, click here.