Caring for a family member with dementia can consume a person’s every waking hour. Challenges posed by a relative’s mental decline and worries about his or her physical wellbeing can overwhelm the one in charge of meeting day-to-day needs.
“It’s a brutal disease for both caregiver and patient,” says Liz O'Donnell, author of “Working Daughter: How to Care for Your Aging Parents While Making a Living” and herself the one-time caretaker for a father who passed away from dementia.
“You’re grieving your own life as it once was, maybe more freedom and time when you weren’t so heavily involved in caregiving,” she says, “and you’re grieving the changes in the person that you care for and your relationship.”
A multi-faceted mobile app in development aims to alleviate the stress associated with caregiving by strengthening the connection between the caregiver and medical professionals overseeing a patient’s case.
“Lots of times the caregivers will say, gosh, I could do a much better job if I could talk to Dr. Whoever more often,” says Ellen Brown, an associate professor and the Erica Wertheim Zohar Chair in Community Mental Health in the Nicole Wertheim College of Nursing and Health Sciences at Florida International University. She is the principal investigator — working with a team that includes leading geriatric psychiatrist Dr. Marc E. Agronin and University of Alabama social work professor Nicole Ruggiano — on a project to facilitate such communication virtually.
The app sends health care providers real-time snapshots of how a patient is faring. The information comes from caregiver responses to specific questions, such as ones about an individual’s capacity to dress and groom without assistance or whether dementia-related symptoms such as repetitive questioning are present or worsening.
“Caregivers can second-guess themselves,” O’Donnell says of the pressures facing family members in such roles. “They’re exhausted, and we don’t have any medical training, typically, and so we can think that we see something or think there’s an issue, but we’re not really sure.”
Couple that uncertainty with having to remember details between doctor visits and articulate them at exam time, O’Donnell adds, and the prospect of instead regularly sharing hard data through an app becomes attractive.
Explains Brown, “The doc or nurse practitioner gets the trend lines with color coding, and they will be able to say what’s going on. This allows them to see if there are changes in memory or behavior.”
Based on fluctuations or highs identified by the app — red lines drawing attention to frequency or severity of a symptom — medical professionals can reevaluate medications, prescribe a new therapy or decide whether a phone call to the patient’s family might be necessary.
The CareHeroes app, as it is called, also offers a chatbot with evidence-based responses related to caregiving best practices as well as links to educational videos and the web sites of reputable sources, such as the Alzheimer’s Association.
Addressing the emotional wellbeing of the caregiver are screening questions to determine if feelings of sadness or being overwhelmed bear following up with a physician or perhaps a social worker who can suggest relief through ancillary services such as adult day care.
Another feature intends “to elevate daily activities and interactions,” Brown says, by providing a sense of agency to the person in care. To compensate for language deficits that accompany dementia, the app allows family members to use touch-screen technology to create a gallery of choices — by selecting from available illustrations or uploading personal photos of favorite foods, articles of clothing, recreational activities — that can be offered to the affected individual.
Brown envisions expanding the latter feature to support additional personalized complements — short videos, an oldies playlist, family photos that span decades — to help spur positive engagement.
Having access to such reminders of a lived experience captured on the app could positively impact a professional caregiver’s understanding of the dementia patient once he or she enters residential care. It might foster empathy and even spark of a sense of satisfaction for often-overworked paid caretakers faced with changing bedsheets, checking vitals and completing endless paperwork, O’Donnell says. She sees a potentially “humanizing” aspect to sharing the story of someone’s former life — even if it is just one of the 50 million worldwide affected by the debilitating disease.
“My father’s dementia, for example, manifested in violent behavior,” O’Donnell says. “To nurses and hospital staff, he was not the favorite patient by any means.
“So I always felt it was my role to humanize him and remind them he wasn’t just the grumpy or mean old man in 29B or whatever room. But that was actually my dad, somebody’s grandfather, who loved gardening.”