Every speech-language pathologist who travels the halls of a long-term care facility has faced this problem. You receive a referral to check for dysphagia in a resident who is losing weight. You pull the chart and complete your initial assessment, only to find it’s not dysphagia at all. It’s late-stage dementia.
In many of our clients battling later-stage dementia, characteristic behaviors—such as lack of focus and wandering—converge to form the perfect storm of unintentional weight loss even before true dysphagia is present. We’ve all seen it. The client can’t focus long enough to stay seated at the table during meals. The client wanders incessantly despite redirection. As SLPs, we know numerous effective strategies to maximize the dining experience for someone with dementia—altering the color of dishware, decreasing distractions, dietary modifications, training other staff on functional communication and feeding strategies—but what do we do if we try all of these compensatory strategies and behaviors persist? My thought—if you can’t beat them, join them! Hence, what I call the “Grazers Program.”
Much as the name implies, the Grazers Program challenges caregivers to meet residents where they are—literally—with nutritional opportunities, versus trying to make them conform with traditional meal routines. So let’s break this down further. Many people with dementia wander. Wandering behavior interferes with normal dining experiences, while also increasing calories burned. This leads to unintentional weight loss, which has been linked to increased illness and even mortality in people with dementia. Resistance to eating also frustrates caregivers, who can’t get them to sit still long enough to eat.
My question is, “Why do they have to sit still to eat?” I hope to answer this question with the Grazers Program, based on a simple premise: “They don’t.”
Think about it. If the swallowing mechanism works, we can still eat food and consume the necessary calories to maintain weight, even while walking. Marathon runners eat during a race and we’ve all grabbed lunch on the go. Could caregivers help our ambulatory clients with later-stage dementia do the same? The answer is yes. How do I know? I did it.
I worked for years on a fairly large, secure, memory-care unit. I routinely consulted on clients exhibiting late-stage dementia. I saw the scenario from the beginning of this post play out countless times. I’d complete my evaluation, find swallowing function intact, and share environmental modifications and cueing to improve attention to task and functional communication, only to routinely find poor follow-through and continued weight loss despite my best efforts.
So after multiple failed attempts to fit these clients into the facility’s system, I changed the system.
- I scheduled a meeting with the facility director, director of nursing and head of dietary services. I pulled relevant research articles citing topics related to unintentional weight loss in late-stage dementia (email me for references/resources) and the devastating effects of this weight loss on overall well-being.
- I complimented the facility on all the strategies and environmental modifications they already incorporated into their meal service, and then presented a list of clients with late-stage dementia still struggling to maintain their weight despite interventions.
- I provided further information about other effects of attention issues and wandering.
Once the facility administration agreed to “do more” in supporting these residents, I introduced the Grazers Program.
- We selected one resident from each hallway to participate based on weight-loss statistics, resistance to previous intervention and propensity for wandering—without the use of a walker or other assistive device.
- Facility “champions,” consisting of various staff and even administration, work with target clients.
- Each champion has a time slot at the top of each hour to offer their resident a healthy nutrition option, including granola bars, shakes, fruits or other foods consistent with residents’ prescribed diets. Instead of attempting to direct clients to sit in the dining area, the champions meet clients wherever they are and enter into the client’s desired activity. If the resident is wandering, the champion approaches them, engages in functional communication to introduce the food item per previous instruction, then wanders with them, providing intermittent cues and modeling to consume more of the presented item. Champions often also consume items to further cue residents. Champions spend five to 10 minutes per encounter. This is the extent of each champion’s duties. Routine weight checks monitor overall effectiveness of the program.
- I helped create a basic spreadsheet to track champions and their clients. Champions check off their time slot showing they presented an opportunity for nutrition. They check off their time, as long as they make an attempt, regardless of overall consumption.
- Monthly weigh-ins showed success for this program, so I wanted to boost these achievements by sponsoring champion team challenges: a “Biggest Gainer” contest, for example, where each team vied for their client to gain the most weight. Recognition for champions included shout-outs in facility newsletters, pizza parties and other rewards.
I know what you’re thinking: This would never work in my facility. I wouldn’t be able to find enough people with time to do this every day. Before you write it off, however, let me share a few points. Most facility’s schedules already include times at which a resident is offered a nutrition opportunity. For instance, you don’t need a champion at 8 a.m.—or whatever your facility’s normal breakfast hour. The same is true for lunch and dinner. Many facilities also schedule snack or hydration times, so several hours are already covered.
Plus, each encounter is extremely short by design. This allows more staff to participate—including staff not typically involved in direct patient care. Many office staff found contributing in a tangible, patient-centered way to be exciting. Each champion volunteer—and we had more than we needed once the contests started—received brief training from staff SLPs on how to approach late-stage dementia clients and signs to watch for that may warrant nursing notification. In addition, we targeted only two or three residents at once.
Still need convincing that attempting to induce a shift in facility thinking is worth your efforts? I’ll leave you with John’s story. He was the first client I worked with using this program. He’d already experienced chronic weight loss when I met him. His wife was devastated by his “skin and bones” appearance, but stated she knew there was nothing that could be done. He couldn’t focus at the table and he wandered all day. Upon reviewing his chart, I saw that his physician unsuccessfully tried an appetite stimulant and made a notation stating patient presents with late-stage dementia and is no longer able to gain weight.
I gathered my “champions,” gave them a vision and a mission, and set them loose. John gained 10 pounds in the first week! The entire mood of his care team shifted. They achieved the impossible. They made a difference. I’ll never forget it. As we targeted more clients and contests inspired more participation, almost every case resulted in successful weight gain or a stabilized loss—not because of some breakthrough discovery, but because we took the time to meet clients where they were. Literally. Their needs became more important than our routines. More important than our schedules.
After that first week, John’s wife happily said to me, “Now there he is. That’s what my John is supposed to look like.” I was ecstatic! So, I was surprised when around three months later, she approached me and asked for John to “graduate” from the Grazers Program. I’ll never forget her face when I questioned why. “He’s starting to get a little chubby,” she admitted. We had a good laugh over that.
None of us can defeat late-stage dementia (yet), but we can all take a few minutes to better serve this population. Put our hectic schedules and routine aside for a few minutes and meet them where they are.
Robert Maxwell, MA, CCC-SLP, is a regional clinical director for Genesis Rehab Services. He currently chairs the dementia special interest group for Genesis Rehab Services and has presented on the company, local, state and national levels on cognitive-linguistic and swallowing deficits related to people with dementia. He’s also an affiliate of ASHA Special Interest Group 15, Gerontology. Robert.Maxwell1@genesishcc.com