Help for Those Who Care for Patients with Dementia

Mealtime is no picnic for many people with dementia and the caregivers that are helping them live at home

Caring for a person who’s living at home with dementia can be difficult, especially if the caregiver lacks support from friends or family.

Research done at the Ohio State University and published in the journal The Gerontologist. has built a framework for future intervention meant to assist caregivers in developing a safe and doable mealtime routine for individuals living at home with dementia.

Interviews with various health professionals were conducted in addition to collecting information about the different barriers to patients’ mealtime participation. Clearing clutter, decreasing distractions, using written cues and finding assistance from a community-based nutrition program such as Meals on Wheels provided strategies to easier meal times.

lead author Lisa Juckett, assistant professor of occupational therapy in The Ohio State University School of Health and Rehabilitation Sciences notes, "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?".

"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 come into play, which is why eating is complex -- it's much more than bringing a fork to your mouth."

According to the Centers for Disease Control and Prevention, more than 80% of people with dementia in the United States live at home. An estimated 60% of home-based patients don’t routinely eat or can 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."

Juckett notes, that despite organizations providing training sessions or support groups about taking care of patients with dementia at home, a stressed or overwhelmed caregiver might not be able to or desire to go that route.

"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.

The study included information from interviews of 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, in addition to staff of the largest Meals-on-Wheels provider in Ohio, LifeCare Alliance.

The main challenges to mealtime participation at home were identified. In those with dementia, cognitive impairment may mean they forget to eat, don't recognize unsafe food, and are distracted during preparation and eating.

Some may not have the functional ability to open packages and work a microwave. A cluttered home environment can lead to a fall risk, sounds from TV and radio can be distracting. Even a patterned tablecloth can cause visual confusion. In addition, the timing of caregivers may not cover these issues around mealtime in the house.

Professionals provided the following strategies given the mentioned barriers:

·         Lowering auditory and visual distractions.

·         Eliminating household clutter, clearing pathways and improving lighting.

·         Providing written instructions to guide patients' mealtime activities.

Providing a connection between a table and eating can enhance the routine, but for those with dementia that would rather eat on the couch, making sure they’re sitting upright can improve safety when they swallow.

Caregivers are reminded to get a clinical evaluation of the home environment to obtain individualized guidance. If they’re not able to, Juckett encourages the Meals-on-Wheels to help.

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."

Below are simple meal ideas for caregivers:

1. Keep easy meals on hand for those you have to feed. Cottage cheese and fruit, cheese and crackers, or peanut butter sandwiches.

2. Use frozen vegetables that are already chopped to make meals. Onions and peppers are available in frozen varieties to keep meal prep simple.

3. Stock the pantry with simple staples like beans and brown rice. These provide fiber and protein without a lot of prep time.

4. Try protein powder, Greek yogurt and frozen fruit in smoothies for patients who have limited appetite but are willing to drink smoothies.

5. Make egg muffins ahead of time to keep in the freezer for a quick go-to meal with toast or fruit for patients with dementia.

Lisa Andrews, MEd, RD, LD

Journal Reference:

1. Lisa A Juckett, Mequeil L Howard, Beth E Fields, Shannon E Jarrott, Lorraine C Mion, Kali S Thomas. Supporting mealtime participation among people living with dementia at home: Challenges and strategies for caregivers. The Gerontologist, 2023; DOI: 10.1093/geront/gnad167