Helping caregivers help people with dementia eat at home

The home environment can pose challenges for both the patient and those providing care -- confusion and functional problems linked to dementia and a lack of caregiver support for friends and family members thrust into the role, to name a few.

A new study led by researchers at The Ohio State University has laid the groundwork for a future intervention designed to help caregivers establish a safe and workable mealtime routine for people with dementia living at home.

In addition to explaining the various barriers to patients' mealtime participation, interviews with a range of health professionals for the study identified strategies to make eating go more smoothly. Among them: reducing distractions and clearing away clutter, using written cues, and leveraging assistance that can come from a community-based nutrition program like Meals-on-Wheels.

"It comes down to keeping things simple. How do we keep that environment as simple as possible so people's eyes and ears aren't distracted and taking their attention away from their food?" said lead author Lisa Juckett, assistant professor of occupational therapy in The Ohio State University School of Health and Rehabilitation Sciences.

"For people with dementia, it's not just 'I forget to eat and therefore that's why I'm at risk of malnutrition,' which some people might think. It's the combination of all these other factors that really come into play, which is why eating is complex -- it's much more than bringing a fork to your mouth."

The study was published recently in the journal The Gerontologist.

Over 80% of people with dementia in the United States live at home, according to the Centers for Disease Control and Prevention. An estimated 60% of home-based patients aren't able to routinely eat or prepare food on their own.

"We know that the older adult population is growing and older adults are living longer, but that doesn't mean they're living lives that are healthier and disease-free," Juckett said. "Alzheimer's and related dementias are expected to be on the rise over the next several decades, and it's estimated that the health care system won't be able to keep up with addressing the needs of people with dementia. That places more burden on caregivers who are not paid to do this but want their loved ones to stay at home, because that's where the majority of people want to age -- at homes and in communities of their choosing."

While organizations hold training sessions or support groups and offer educational resources about looking after dementia patients at home, a stressed and overwhelmed caregiver may not be able or want to take that route, Juckett said.

"We wanted to give caregivers actionable steps and strategies that they can try out with loved ones at home because they already have a lot going on," she said.

Juckett interviewed 20 professionals whose work involved providing community-based care to people with dementia, including registered nurses, speech-language pathologists, social workers, occupational therapists, counselors and registered dietitians, as well as staff of the largest Meals-on-Wheels provider in Ohio, LifeCare Alliance.

The sessions identified the main challenges to mealtime participation at home. For people with dementia, cognitive impairment may mean they forget to eat, don't recognize unsafe food, and are distracted during preparation and eating. Some also lack the functional ability to open packages and operate a microwave. A cluttered home environment poses a fall risk, radio and TV sounds can be distracting, and even a patterned tablecloth can cause visual confusion. On top of these factors, caregiver training doesn't typically cover these complexities surrounding mealtime in the home.

Strategies recommended in the study take these barriers into account. Professionals recommended:

• Lowering auditory and visual distractions.
• Eliminating household clutter, clearing pathways and improving lighting.
• Providing written instructions to guide patients' mealtime activities.

Establishing an association between a table and eating can improve the routine, but for people with dementia who prefer to eat on the couch, ensuring they're sitting upright can help keep them safe when they swallow.

Caregivers are also advised to sign up for a clinical assessment of the home environment to receive individualized guidance. If that's not possible, Juckett said, this is where a Meals-on-Wheels program can help -- staff and volunteers who have eyes on meal recipients on a daily or weekly basis can watch for behavioral or household hints that a referral or coordination of services is in order.

"Meals-on-Wheels could be powerful for addressing the needs of people living with dementia, of course, but also at providing some relief and reduced burden for the caregiver as well," Juckett said.

Juckett has begun interviews with caregivers and the people with dementia in their care for insights into how their experiences line up against what the health professionals had to say. From there, the work will move into developing core components of an intervention focused on mealtime in the home and testing its effectiveness.

"We don't want to make recommendations that add to the caregivers' burden," she said. "It often goes unrecognized how much work goes into caregiving."

This work was supported by the National Institute on Aging's IMbedded Pragmatic Alzheimer's disease and Related Dementias Clinical Trials (IMPACT) Collaboratory.

Co-authors included Mequeil Howard, Shannon Jarrott and Lorraine Mion of Ohio State, Beth Fields of the University of Wisconsin-Madison and Kali Thomas of Brown University.