An FTD caregiver in the United Kingdom spoke about the disease’s emotional and financial impact in recent interviews with the BBC und Yahoo! Life.

Gareth Heslop, of Sheffield, UK, said that being a care partner for his long-time partner and fiancée, Sarah Frith, has put a “huge strain on the family.” And like so many FTD care partners, he is not emotionally able to take time for himself.

“St. Luke’s Hospice comes around every few weeks and they say, ‘Gareth, you look really tired. We recommend putting Sarah into respite care, just for a week at a time, to help you and the boys,’ but I just can’t do it,” he said.

Frith began exhibiting symptoms in 2019, when she was just 46. “Instead of a toothbrush, she referred to it as a tooth-cleaning thingy,” Heslop said. “We all have days when we say something a bit silly, so I just dismissed it as that.” But as time went on, Heslop kept noticing odd things about her behavior, and in 2020, he started to become worried.

“Her GP … referred her for a memory test,” he said. She passed, but I now know the test isn’t always suitable for people with FTD, as memory loss isn’t always one of the first symptoms.”

Nearly a year later, Heslop sent her doctor a letter detailing his concerns. The doctor referred Frith to a neurologist, who diagnosed her with FTD.

Financial Impact

Since Frith’s diagnosis, Heslop has become the sole income earner; he works full-time and provides care full-time. The Catch-22 is that the additional expense of keeping her at home, which includes adapting the house for her needs, places an additional burden on him to keep his job, even though managing both his personal and professional roles simultaneously has been exhausting.

Unfortunately, most families affected by FTD experience a sharp drop in their earnings after a diagnosis. Indeed, according to a 2017 Neurologie lernen co-written and funded by AFTD found “the overall [annual] household income before diagnosis ranged from $75,000 to $99,000 (USD) but declined after diagnosis to $50,000 to $59,999.”

In addition to the loss of income, families also often must absorb indirect costs. In the United States, such costs can include hospital admissions, office visits, physical therapy, home healthcare, assisted living care, nursing home care, respite care, and time/cost estimates for unpaid care.

Emotional Impact

Das Neurologie study also examined caregiving’s impact on the health of FTD care partners. It found that “67% of caregivers of patients with FTD reported a notable decline in their health and 53% reported increased personal health care costs.”

Heslop is living proof of these statistics. “My own health is deteriorating too, because I don’t have any space to think about looking after myself,” he said. “I get to the point when it’s been four or five days since I’ve had a bath, and it’s not that I don’t have time to. I just forget to have it.” He also said he has experienced depression. “It’s something I want to talk about and acknowledge, it’s a harsh reality,” he told the BBC.

Unfortunately, the emotional toll also extends to Heslop and Frith’s two children, Lewis and Euan. “It’s hard enough losing a parent when you’re young, but with dementia it’s basically like a long goodbye – you’re grieving before they’re actually gone,” Heslop said. (This phenomenon, which is called “anticipatory grief,” is a hallmark of the FTD journey. AFTD’s Gehen mit Trauer publication explains this and other elements of grief in FTD.)

Heslop intends for Frith to stay in their home for as long as possible. But he is also realistic about the possibility of her needing to move into a facility. “The decision will be made slightly easier knowing I’m making it not just for Sarah, but also for the kids,” he said. “Obviously Sarah’s needs are paramount, but I have to think about them too.”

One might wonder why Heslop took the time to be interviewed. “I’m hoping by sharing our story people may know not to dismiss behavioural changes in loved ones even if they’re younger,” he says. “I’d also like people to know there is support out there. When Sarah was diagnosed, I did hours of research, so we were prepared as possible for the future, but I’ve spoken to a lot of people who feel abandoned.”

---

FTD ist eine komplexe Krankheit mit emotionalen und praktischen Herausforderungen, die sowohl isolierend als auch überwältigend sein können. Eine Selbsthilfegruppe kann Ihnen einen sicheren Ort bieten, um Ihre Gedanken mit anderen zu teilen, die Sie verstehen, und Ihnen Ressourcen für den bevorstehenden Weg zu geben. Die HelpLine von AFTD kann Sie unterstützen und alle Ihre Fragen zu FTD beantworten. Kontaktieren Sie die HelpLine unter 1-866-507-7222 oder info@theatd.org.