Helpline support eases stress for dementia caregivers
Penn Nursing researchers and collaborators found that caregivers for family members with dementia who receive one or two consultations saw improvements in their ability to manage stress, and that people requesting more than one call reported lower baseline confidence in their ability to manage their emotions than those requesting only one call.
3 min. read
Key Takeaways
Family caregivers for people with dementia who requested two or three consultations from the Alzheimer’s Association Helpline reported lower baseline confidence in their ability to manage their emotions than those requesting one
Participants receiving one or two consultations reported improvements in their ability to manage stress
Phone-based support can improve the well-being of caregivers, which is especially valuable for those facing barriers to in-person support
Family caregivers for people with dementia report emotional strain from witnessing personality changes, physical exhaustion from providing intensive supervision, social isolation, and financial hardship. To receive counseling and information, they can call the Alzheimer’s Association’s free 24/7 telephone helpline to receive a care consultation and help creating an action plan. Previous research has found that 80% of callers benefited from a single consultation.
But do callers benefit from additional consultations? And are callers who initially report greater struggles in managing their emotions more inclined to request a second or third consultation? A team of researchers from Penn Nursing and the Alzheimer’s Association tackled these questions, publishing their findings in PLOS.
The researchers found that people who ended up requesting a second or third consultation after the initial one had reported a lower baseline ability—prior to the first consultation—to manage their emotions than those who stopped after just one consultation.
“Caregivers experiencing greater emotional challenges may recognize their need for additional support and proactively seek it through multiple consultations,” the authors write. “Alternatively, helpline staff may identify these individuals as requiring more intensive follow-up based on their initial presentation.”
Penn Nursing professor Nancy A. Hodgson, the paper’s first author, says rather than waiting for family caregivers to request additional support, helpline staff can use initial screenings to identify caregivers who may benefit from offers of multiple consultations.
Additionally, researchers found that people who requested and received one or two consultations experienced significant improvements in their ability to manage stress and negative emotions, while the small number of people requesting three calls limited the ability to test for statistical significance in that group.
Callers between July 2021 and July 2022 were asked to participate in the study, which yielded 1,375 people requesting one follow-up consultation, 83 requesting two, and 13 requesting three. Following completion of a baseline survey, callers were transferred to a care consultant to conduct a consultation or schedule one for later. Each consultation lasted up to an hour and resulted in the creation of an action plan, which consisted of reasonable goals and next steps for the caregiver to address any issues and concerns discussed during the consultation
Two weeks after the first consultation, an Alzheimer’s Association research specialist conducted a follow-up survey about execution of the action plan. If participants exhibited no progress on action plan steps, brought up barriers to completing steps, and/or talked about new concerns or needs, they were asked if they wanted a second care consultation. The process repeated for those who had a second consultation, to see if they wanted a third.
The baseline and follow-up surveys asked about caregivers’ confidence in their ability to self-manage fatigue, pain, emotional distress, and other symptoms.
“This research demonstrates that accessible, telephone-based support can meaningfully improve the emotional wellbeing of dementia caregivers without requiring in-person visits,” Hodgson says, “which is particularly valuable for those facing transportation barriers, geographic isolation, or inability to leave their loved ones with dementia.”
Hodgson says the research team is currently completing a qualitative analysis examining the specific needs that caregivers express when they call the helpline. She says that in 1,000 call logs from the same time frame as this study researchers identified 21 distinct types of caregiver needs, with three top concerns emerging: information about home- and community-based services, techniques for communicating with people living with dementia, and emotional support.
She says this work, which will be presented at the upcoming American Gerontological Society of America meeting in November, complements their quantitative findings by showing what caregivers are seeking help with, not just whether the consultations improve their ability to manage their emotions.
Nancy A. Hodgson is the Claire M. Fagin Leadership Professor in Nursing and chair and professor in the Department of Biobehavioral Health Sciences in the University of Pennsylvania School of Nursing.
The other co-authors are Subhash Aryal and Sonia Talwar of Penn Nursing and Sam Fazio and Kerry Finegan of the Alzheimer’s Association.
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