The results of the ALS Focus Caregiver Survey were published recently, and they tell a story that is familiar to many: time is a finite resource, and how we choose to spend our time says a lot about what we think is important.
This survey included responses from over 600 current and past caregivers about their needs and wellbeing. They were asked about topics including the amount of time they dedicated to caregiving, the programs and tools they used as caregivers, how prepared they felt they were for changes in caregiving responsibilities, their concerns about caregiving, and how they assessed their quality of life.
Nearly 70 percent of caregivers reported devoting more than 30 hours a week giving care, and less than 15 percent reported giving care for less than 10 hours a week. Not surprisingly based on these responses, they programs caregivers used and felt they needed the most included home visits from nurses, occupational and physical therapists, with more than 50 percent of caregivers saying they used and benefited from such visits. More than 30 percent of caregivers replied that they took advantage of training on general caregiving, and overall respondents rated this the second most needed program after home visits from nurses, occupational and physical therapists.
The value of visit from professionals and training on caregiving is underscored by how prepared current caregivers felt about changes to their caregiving role, with nearly 45 percent responding they felt somewhat prepared for new responsibilities while 30 percent replied they felt somewhat unprepared. Less than 10 percent said they felt “very prepared” to take on new responsibilities.
And time was an important consideration when caregivers mentioned what were their most pressing concerns about caregiving. Not at all surprisingly, the most common concern was their family and loved ones’ wellbeing. A close second, however, was worries about the future. More than half of respondents reported that they worry about lacking time to relax or engage in self-care, and more than a third worried about having less time for enjoyable activities like hobbies.
But while they acknowledge that they face challenges and time constraints, overall more than 60 percent of current caregivers felt positively about their quality of life.
Overall, the results of the survey provide a snapshot of caregivers as people dedicating significant time to their role as a caregiver that feel moderately prepared for changes to that role, and overall feel like they have a positive quality of life. They value visits and training from healthcare professionals, and consider this the support they need most. Their top concern is their loved ones’ wellbeing.
Is there more to this story? Absolutely. Based on the results of this survey the Focus team is considering a deeper dive into the experiences of current caregivers as compared to past caregivers, and comparing the experiences of caregivers at different stages of the disease. The unique needs and concerns among caregivers for veterans is another area to explore.
The results of this and other ALS Focus surveys are intended to improve support for people with ALS and caregivers, inform research and clinical trials, and help us understand how to effectively advocate for the ALS community. The current Focus survey on telehealth is still open but is will close soon. If you haven’t already, visit: https://www.als.org/research/als-focus to register and add your voice today.