Supporting Mealtime Participation Among People Living With Dementia at Home: Challenges and Strategies for Caregivers

Abstract

Background and Objectives

Approximately 60% of people living with dementia at home are unable to routinely participate in mealtime activities (e.g., eating, safe food preparation), warranting assistance to ensure people with dementia meet their health and nutritional needs. The purpose of this study was to characterize these barriers to mealtime participation and identify potential caregiver-led strategies to enhance mealtime activities.

Research Design and Methods

We used a qualitative descriptive approach and obtained semistructured interview data from (a) allied health professionals and (b) community-based nutrition program providers who frequently serve people with dementia. Interview data were examined by means of directed content analysis and framework methodology until data saturation was reached. Codes from our analysis were categorized according to constructs drawn from the Socio-Ecological Model for Developing and Implementing Comprehensive Dementia Care.

Results

Data were obtained from 20 participants who attributed common mealtime participation barriers to: impairments in functional status, cognitive status deficits, a lack of caregiver knowledge and skills, and unsafe living conditions. Caregiver-led strategies to overcome these barriers included: reducing auditory and visual distractions, providing written cues to perform mealtime activities, eliminating clutter and fall risk hazards, and leveraging community-based nutrition program providers (e.g., home-delivered meal providers).

Discussion and Implications

People with dementia face several eating and mealtime participation obstacles. Caregiver-led strategies implemented by family, friends, or community-based nutrition program providers may enhance mealtime activities at home. Findings point to opportunities to develop decision-making tools and resources for caregivers to optimize the health and nutrition of people with dementia.

Participation in mealtime activities, characterized by eating, drinking, and food preparation (Juckett & Robinson, 2019; Plastow et al., 2014), is a major contributor to optimal health and well-being. One’s independent ability to select food items to consume, prepare meals, and feed oneself has been consistently associated with better health outcomes, particularly among community-dwelling older adults at heightened risk for illness and disability (Farmer et al., 2018; Ferguson et al., 2023; Reicks et al., 2014). Despite their routine nature, mealtime activities are highly complicated, particularly for people living with dementia whose cognitive, sensory, and functional deficits can limit mealtime independence (Cipriani et al., 2016). As a result, approximately one third of community-dwelling older adults with dementia experience malnutrition (Borda et al., 2021), exacerbating the risk for health decline and deterioration. In long-term care settings (e.g., skilled nursing facilities, residential care homes), barriers to mealtime participation have included inattention and difficulties with chewing and swallowing (Kurosu et al., 2021), confusion, fatigue, distractibility in crowded dining environments (Liu, Tripp-Reimer, et al., 2020), impaired hand coordination skills, and a lack of appetite during scheduled mealtimes (Faraday et al., 2019). Recommended strategies to overcome these barriers in long-term care have been proposed, such as by providing verbal cues and modeling eating behaviors (Burdick et al., 2021), offering hand-on-hand assistance to bring food items to the mouth (Batchelor-Murphy et al., 2017), and providing one-on-one encouragement during meals (Liu, Perkhounkova, et al., 2020). Although these strategies have shown promise for improving eating and mealtime participation, they typically require staff assistance or other paid caregiver resources (Keller et al., 2022).

While evidence relative to the mealtime needs and strategies for people with dementia in long-term care settings is growing, over 80% of people with dementia in the United States reside at home (CDC, 2019). Indeed, the overwhelming majority of people with dementia prefer to age in their own homes and communities (AARP, 2021), underscoring the need to identify successful approaches that enhance mealtime activities specifically targeted to this setting. One common approach for facilitating mealtime participation among people with dementia in the home environment is leveraging assistance from friends, family, or other caregivers (collectively referred to as caregivers herein forth; Damme & Ray-Degges, 2016; Hsiao et al., 2020). These caregivers often are responsible for making decisions that relate to food purchases, meal preparation, meal schedules, safe food practices, supervision during meals, and reminders to consume food and beverages (Mole et al., 2021). Despite the increasing number of family members or friends fulfilling this caregiving role (Alzheimer’s Association, 2022), there remains little guidance for how these caregivers can appropriately and effectively improve mealtime participation and, in turn, support the health and nutritional needs of people with dementia (Holt Clemmensen et al., 2021).

As a first step to better equip caregivers with the tools, knowledge, and skills required to enhance mealtimes among people with dementia, work is needed to elucidate obstacles to mealtime participation in the home and potential solutions to overcome such challenges. Accordingly, the present study explored (a) barriers to mealtime participation among people with dementia who live at home and (b) actionable strategies that caregivers can implement to optimize mealtime activities. In response to these identified barriers and strategies, we also describe opportunities to develop decision-making support tools to assist caregivers in systematically selecting approaches that promote mealtime participation.

Research Design and Methods

Study Design and Participants

We designed the present study using a qualitative descriptive approach, which has been previously applied to address important clinical issues and identify quality improvement opportunities in real-world environments (Chafe, 2017; Doyle et al., 2020). To execute this approach, we conducted semistructured interviews with allied health professionals who had experience delivering community-based dementia care as well as community-based nutrition program providers who frequently serve people with dementia. Through convenience sampling, we leveraged our own professional networks (e.g., former clinical colleagues; networking events at aging conferences) to recruit study participants. Eligible participants were allied health professionals or nutrition program providers with at least 6 months of experience delivering care to people with dementia and their caregivers who resided in the community setting at the time care was provided. We intentionally recruited registered nurses, speech-language pathologists, social workers, occupational therapists, case managers, and registered dietitians given their role in supporting food access, eating, and mealtime activities. Providers of community-based nutrition programs were recruited from home-delivered meal and congregate dining programs given their mission to advance the nutritional status and well-being of older adults at high risk for health decline and institutionalization (Lloyd & Wellman, 2015). Our decision to interview allied professionals and nutrition program providers was driven by our interest to understand the most common mealtime barriers and strategies as experienced by the wider population of people with dementia—rather than individual experiences of people with dementia or their caregivers. All study activities were approved in accordance with ethical standards set forth by the Institutional Review Board at The Ohio State University (#2022E0690). The methodology and findings of this study are presented following the Consolidated Criteria for Reporting Qualitative Research (Supplementary Section A; Tong et al., 2007).

Data Collection

Guiding model

We applied the Socio-Ecological Model for Developing and Implementing Comprehensive Dementia Care (Gitlin & Hodgson, 2018) to guide our data collection procedures. The model postulates that dementia care is influenced by multiple, interacting forces that cut across six interrelated domains: (1) the person with dementia, (2) caregivers, (3) the living environment, (4) the neighborhood and community, (5) health and human service systems, and (6) national policies. Each domain is also comprised of several constructs—or factors—that limit or promote daily quality of life. Given that the model encompasses an expansive set of domains, we narrowed our data collection and analysis procedures to address only domains 1–3 (Figure 1). The reason we narrowed our focus to these three domains is twofold. First, we found it necessary to thoroughly understand factors at the person with dementia, caregiver, and living environment levels prior to exploring broader, and arguably more complex, socio-ecological domains. Second, with the growing need to improve mealtime participation among people with dementia, we sought to recommend practical, caregiver-led strategies that could be readily implemented rather than suggest community-, health services-, or policy-level strategies that are detached from the everyday mealtime activities that people with dementia experience.

Figure 1.

Abbreviated Socio-Ecological Model for Developing and Implementing Comprehensive Dementia Care (Gitlin & Hodgson, 2018).

Interviews

Semistructured interviews were conducted with participants either in-person or web-based conferencing between August 2022 and January 2023. To maximize consistent data collection procedures, all interviews were conducted by the first author—a female, doctorate-level assistant professor with a clinical background in occupational therapy and geriatric rehabilitation. Interviews were recorded, with permission of the participant, and were supplemented by the first author’s field notes that summarized main barriers and strategies described during each interview. Interviews lasted approximately 20–45 min in duration, and questions were guided by our adapted socio-ecological model. Sample questions included: What could be changed around the home to improve eating and mealtime participation? (Living environment domain). What should or can be done to help people with dementia participate in mealtimes? (Caregiver domain). What challenges do people with dementia face when attempting to eat or perform mealtime activities? (People with dementia domain). Our interview guide was piloted with three volunteer interviewees and refined prior to participant recruitment (Supplementary Section B).

Data Analysis

All interview data were professionally transcribed before undergoing our two-phased analytic approach. In the first phase, individual transcripts were examined by two coders to identify significant lines of text that could be categorized as either a “barrier” to mealtime participation or a “strategy” to overcome mealtime participation barriers. In the second phase, a codebook (Supplementary Section C) was developed that extensively defined constructs drawn from our socio-ecological model (Gitlin & Hodgson, 2018). This codebook allowed our team (seven occupational therapy doctoral students) to apply principles of the framework method (Gale et al., 2013) and assign codes to segments of transcripts that represented mealtime barriers or strategies to support mealtime participation. This two-phased approach streamlined our analysis procedures by eliminating interview data that were not relevant to the present study’s objectives—a process consistent with similar qualitative methods that have aimed to expedite analytic procedures through the reduction of superfluous data (Lewinski et al., 2021; Watkins, 2017). Our two-phased approach also allowed our team to effectively distinguish barriers from strategies to support mealtime participation and determine the barriers/strategies that were most frequently identified by interview participants.

In pairs, coders independently reviewed each transcript, assigned codes to segments of text, and met to resolve discrepancies. Discrepancies that could not be resolved in pairs were then presented to the first author to establish coding agreement. All coding team members met weekly to review analytic methods and discuss progress toward achieving saturation. Data collection continued until data saturation was reached—a point at which no new codes were identified in the data (Hennink et al., 2017).

Results

Of the 23 individuals contacted, 20 participated in our semistructured interviews. Participants were primarily female, White, and non-Hispanic. The majority were affiliated with community-based organizations (n = 12), followed by academic institutions (n = 4), hospital-based systems (n = 3), and private practice (n = 1). On average, participants had been employed in their profession for 15.5 years (standard deviation [SD] = 9.8), with 13.0 (SD = 8.7) years being dedicated to working with people with dementia and their caregivers. Participants’ professional backgrounds included occupational therapy, nutrition program providers, nursing, case management, counseling, speech-language pathology, social work, and dietetics (Table 1).

Table 1.

Characteristics of Semistructured Interview Participants

	Frequency (%)
Female	17 (85.0)
Professional background
Occupational therapist	5 (25.0)
Nutrition program provider	3 (15.0)
Registered nurse	3 (15.0)
Caseworker or counselor	3 (15.0)
Speech-language pathologist	2 (10.0)
Social worker	2 (10.0)
Registered dietitian nutritionist	2 (10.0)
Employment setting
Community-based organization	12 (60.0)
Academia	4 (20.)
Hospital setting	3 (15.0)
Private practice	1 (5.0)
Years’ work experiencea	15.5 ± 9.8
Years’ experience in dementia carea	13.0 ± 8.7

Notes: N = 20.

^aRepresents average years and standard deviation.

Barriers to Eating and Mealtime Activities Among People With Dementia

Participants identified major and minor barriers that were perceived to limit mealtime participation in the home as experienced by people with dementia. We describe these barriers in further detail below, and findings are organized by our three domains of interest: people with dementia, caregivers, and living environment. Table 2 also presents examples of barriers from each domain as well as illustrative quotes from participants.

Table 2.

Major Mealtime Barriers and Strategies—Participant Quotes

Domain	Construct	Quote
Barriers
People with dementia	Functional status	“I see a lot of clients who are just limited in their range of motion, so—especially with their shoulders, being able to lift their shoulders up to get things out of their kitchen cupboards is a challenge” (119, care coordinator).
People with dementia	Cognitive status	“Well, I think what we mentioned earlier is that they don’t know cognitively how to take the plastic off the tray. They don’t equate that tray with their food necessarily. Problem solving how to eat that lunch can be a problem … this person never ate food like that. They ate it on a plate, or they ate it in a carry out container, but they’ve never seen a container like this” (218, occupational therapist).
Caregiver	Skills and knowledge	“Caregivers are given a ton of overwhelming information at diagnosis or during various healthcare visits or online with the Alzheimer’s Association” (110, occupational therapist).
Living environment	Safety and security	“In my experience with people with dementia living alone, they often have rotten food in the refrigerator or food left on counters that’s rotten. Are they properly washing and cleaning their utensils and plates and things? Those are things that I’ve seen that concerned me when I was working on conservatorship with older adults that had dementia” (117, occupational therapist).
Strategies
People with dementia	Functional status	“I think about finding utensils … and they might have difficulty using utensils. They do so much better with finger foods. I love the finger foods. It’s such a simple intervention, but people forget about it” (113, registered nurse).
People with dementia	Cognitive status	“Putting signs or post-it notes on the microwave because, even now, microwaves have all these buttons and most of us still only use a few of them” (217, nutrition program provider).
Caregiver	Skills and knowledge	“As dementia progresses, it’s necessary to provide care partner education and just tell them it’s going to be very hard for them to sit down and have their structured 30 to 60-minute meal that maybe they’re used to, and they’re going to have to just be okay with giving finger foods or other types of pouches or whatever they can so they’re getting the adequate nutrition and still move around their house in a safe way” (110, occupational therapist).
Living environment	Safety and security	“I think for just any older adult, the fall risk assessment—I think that’s got to be included. Doing a home environment assessment and finding out if there are some tripping hazards or fall hazards would be good for any older adult, but especially one with dementia” (219, registered dietitian).

Note: Domain and construct terminology drawn from Gitlin and Hodgson’s (2018) Socio-Ecological Model for Developing and Implementing Comprehensive Dementia Care.

People with dementia domain

Within the people with dementia domain, the constructs of functional status, cognitive status, lifestyle routines, and social support had major implications on the ability for people with dementia to successfully participate in mealtimes.

Functional status barriers

For functional status, factors such as insufficient hand dexterity and motor coordination, impaired functional mobility (e.g., walking; transitioning from a seated to standing position), decreased visual skills, and poor posture when seated were identified as primary mealtime barriers. Given that people with dementia living at home must navigate their own home environments, such as when walking in and around the kitchen or dining room, one participant commented on the impact that physical impairments may have on one’s ability to independently complete mealtime activities:

A lot of times people have physical difficulties getting from one room to the other. A lot of times what I have found is that either they themselves or their caregivers set them up in one room in the house where all of the activity happens. It’s usually, I have found, adjacent to the kitchen. It’s difficult for them to get, if they wanted, a glass of water—easy for me to hop up and go get it, but for them it’s difficult (113, registered nurse).

Other examples of how functional status barriers limited mealtime activities included challenges with using utensils to slice and scoop food items, opening food and beverage packages, safely walking from the living room to the dining room table, and maintaining upright posture when seated to reduce risk of aspiration during meals. Relatedly, though noted less frequently by participants, poor dentition and impaired oral-motor function—or chewing and swallowing function—also were perceived to increase risk of aspiration, placing people with dementia at higher risk for associated infection (e.g., pneumonia).

Cognitive status barriers

Certainly, cognitive impairment status also served as a primary barrier to eating and mealtimes. In particular, tasks such as remembering when and what to eat, using decision-making and problem-solving skills to reheat meals, sustaining attention throughout the task of eating, and being able to identify safe food items to consume (i.e., discerning food from nonfood items; recognizing when food is expired) were barriers commonly noted by our participants. Participants also reflected on their clients’ inconsistent ability to recall if they had eaten throughout the day and their distractibility during simple meal preparation.

Lifestyle routine barriers

Lifestyle routines—or the lack thereof—were found to limit mealtime participation as perceived by some participants. With disease progression, food preferences were noted to fluctuate, especially if people with dementia experienced sensory changes in their ability to taste and smell food. Further, participants indicated that people with dementia who also have sleeping difficulties may not experience hunger at the same time every day, leading to the development of potentially unpredictable eating schedules. The absence of a consistent and familiar dining location was also perceived to impede participation in meals.

Social support barriers

Lastly within the people with dementia domain, select participants also recognized the inherent barriers to eating and mealtimes when social support was not available to people with dementia. In particular, one care coordinator noted challenges that can arise without routine social support:

You can start [people with dementia] eating, but then they’ll stop. Then they’ll just sit there. Unless you’re there to cue them, they won’t continue to eat … then among people who are living alone, I think one of the biggest problems is remembering to eat and how to cue oneself to eat (119, care coordinator).

Caregiver domain

When considering the caregiver domain, participants indicated the pressing need to build caregivers’ skills and knowledge to help optimize mealtimes and, in turn, improve the health and nutritional status of people with dementia. Notably, this was the major caregiver-level factor that was perceived by participants to influence eating and mealtime participation.

Skills and knowledge barriers

Malnutrition and lack of food consumption by people with dementia were noted by our participants to serve as a source of stress for caregivers, so providing caregivers with appropriate mealtime knowledge and skills was of paramount importance. While caregiver programs and support groups may be available within the community, such as through local Alzheimer’s Associations, few training resources were perceived by participants to reach caregivers and people with dementia within the home environment and even fewer were solely dedicated to mealtime participation. When reflecting on the training needed to support caregiving efforts during mealtimes:

With meal preparation, I found it’s just—caregivers don’t realize how many cognitive activities are involved in meal preparation just from getting a plate, getting your utensils, getting the food, heating it up, going to the table, making sure that you have everything. I think that’s really challenging for a lot of older adults, just getting everything in one space. I think just synthesizing all of that is really challenging (113, registered nurse).

Living environment domain

Two major barriers to eating and mealtime participation within the living environment domain included safety and security and accessibility.

Safety and security barriers

Participants often expressed concern over the safety needs of people with dementia before, during, and after mealtime activities. One of the most common barriers noted was the presence of “clutter,” or unorganized items, around the kitchen, dining, and living spaces. While participants recognized that clutter could obstruct walkways and serve as a major fall hazard, several participants also acknowledged that clutter on appliances can serve as a fire hazard, and clutter on dining table surfaces can distract attention from mealtimes. As stated by one caseworker with experience conducting home visits with people with dementia:

One client in particular pops into mind where I’d walk in and her stove was always just covered with stuff, and not pots and pans type stuff, like paperwork and just random flammables. In this particular client’s case, she was a bit of a collector/hoarder of sorts, and so there was just a lot of disorganization and distractions, and it was hard for her to complete one task before moving on to another (111, caseworker).

Additionally, the threat of food-borne illness was perceived to be a greater risk in people with dementia with short-term recall deficits who cannot remember to refrigerate perishable foods as well as among people with dementia with executive function impairments that disrupt their ability to cognitively recognize when food is expired or spoiled.

Accessibility barriers

Barriers associated with accessibility included the inability for people with dementia to reach items out of the freezer, refrigerator, or cupboards, not having access to functioning appliances (e.g., oven, microwave), limited access to nutritious foods (i.e., food insecurity), and the lack of access to equipment that may help support engagement in mealtime activities. For instance, interview participants noted the value in providing adaptive equipment (e.g., built-up utensils, modified plateware) to people with dementia who may have physical or visual impairments that limit their ability to complete mealtime tasks.

I’m thinking about preparing families once they receive a diagnosis and telling them what pieces of adaptive equipment they will most likely have to get and become comfortable using if the goal is to stay in the home as long as possible as the dementia progresses … but a lot of them don’t have access to the equipment (110, occupational therapist).

Potential Strategies to Support Mealtime and Eating Activities

Though the barriers identified by our interview participants were categorized according to domains and constructs from our adapted socio-ecological model (Gitlin & Hodgson, 2018), many of these barriers were interrelated. As a result, many of the strategies our participants recommended, as described below, may cut across multiple socio-ecological domains (i.e., strategies to address safety and security concerns may also address challenges related to functional status in the kitchen). Importantly, these ensuing strategies, as recommended by our participants, were intended to be implemented by caregivers.

People With Dementia Domain

Overcoming barriers to functional status impairments

Given challenges with dexterity, mobility, vision, and posture, participants shared several potential strategies, based on their own clinical and professional experiences, to support eating and mealtime participation. First—and a relevant precursor for all strategies—the completion of a functional assessment was recommended to identify specific areas of impairment or “breakdown” when people with dementia attempt to participate in meals. One participant referenced the value of applying an interdisciplinary approach during a functional assessment and involving caregivers in care planning:

So if we could think of a group of professionals, whether it be a dietitian and an OT—not sure if you want like a nurse or a speech pathologist—to come into the home, and develop some sort of assessment and follow-up process, right? You maybe do initial assessment on nutrition, home setup, and then individual needs, develop a care plan, teach the care plan, and maybe have one or two follow-up phone calls and make sure the caregiver plan is working (210, occupational therapist).

Presumably, findings from this functional assessment would guide the selection of mealtime strategies recommended for people with dementia and their available caregivers. Examples of potential strategies to overcome functional status challenges included caregivers preopening packages for individuals with limited dexterity or providing “finger foods” that do not require utensils for consumption, providing stable seating (i.e., dining room chair with a firm backrest and bilateral armrests), or placing food on plates that allow for high color contrast.

Overcoming barriers to cognitive status impairments

To address memory and attention deficits and difficulties with decision-making and problem-solving skills, several participants acknowledged the value of caregivers providing written and visual cues to people with dementia. Suggested strategies included the use of timers to remind people with dementia when and what to eat, written directions for properly storing food, tracking forms and checklists to indicate when meals were provided and what foods were consumed, and written labels on appliances denoting their use or instructions for meal preparation (e.g., reheating of frozen or chilled meals).

To overcome barriers associated with attention, the reduction of sensory stimuli was frequently endorsed by participants. Recommendations included removing or reducing auditory stimuli by turning off the television, radio, and streaming devices as well as minimizing the number of family members who may unknowingly contribute to auditory and visual distractions.

Overcoming barriers to inconsistent lifestyle routines

For some people with dementia, mealtimes may not occur at a dining room table or even within the kitchen. Rather, they may occur in the living room or family room, potentially leading to challenges for people with dementia to direct their attention toward mealtimes. One home-delivered meal provider described the value of having a consistent place solely dedicated to eating:

I have a client who gets the meal and it’s a whole presentation. You get to her house, her dining room table is completely set, she puts out a nice napkin and silverware and gets out a dish, and she takes all her food out of the containers and puts it on a plate. It’s helpful (212, nutrition program provider).

Overcoming barriers to social support

Nearly all the strategies suggested by our participants could not be operationalized without the social support provided by family members and friends. For people with dementia who have little to no caregiving support, community-based nutrition program providers, such as home-delivered meal drivers, could also provide enhanced delivery services by heating or reheating meals for clients, opening meal trays and packages, gathering utensils and plateware, or monitoring food safety. As expressed by one home-delivered meal driver:

Sometimes I’ll go back again and the meal will still be there from the day before, so I always carefully take that one away so that they don’t eat somethin’ that’s been sittin’ out all night (214, nutrition program provider).

Caregiver Domain

Overcoming barriers to skills and knowledge

Participants heavily endorsed the development of caregiver education and training programs to support mealtime participation among people with dementia. Being mindful of caregiver stress and burden, however, participants suggested that training should include quick, one-page flyers, brief videos, 24-hr hotlines, and education sessions that focus specifically on nutrition.

Living Environment Domain

Overcoming safety and security barriers

Within the home, participants described the importance of monitoring safety, particularly if people with dementia attempt to use kitchen appliances, navigate around cluttered areas, and properly store perishable foods. One clear strategy to reduce fall and fire hazard concerns included removing clutter from walkways, clearing countertop space around stovetops and near microwaves, ensuring light fixtures and switches are easily accessible so that kitchen and dining areas are well-lit, and monitoring food storage and disposal behaviors. To execute these strategies, participants again referenced the position of home-delivered meal drivers who may be able to provide routine in-home safety checks for people with dementia who may not have access to family caregivers:

The driver could go in there once a month just to make sure their microwave is working. Is there a clear path from the refrigerator to the microwave? Is there a clear path from the kitchen to some place safe to eat? It doesn’t have to be the driver who fixes the clutter on the table, but they can be the alert [to the home-delivered meal agency] that says, ‘Oh, there are more issues here that need to be addressed’ (119, caseworker).

Overcoming barriers to accessibility

Several participants commented on the value of community-based nutrition programs for people with dementia who experience food insecurity and challenges with grocery shopping and meal preparation. In particular, home-delivered meal programs were recognized as instrumental for improving access to nutritious meals while also providing people with dementia with opportunities to interact with meal drivers who perform brief wellness checks. When reflecting on the advantages of home-delivered meal programs, one allied health professional stated:

It’s good to know that they’re getting food that they might not otherwise have. That it shows up. Someone delivers it, and lays eyes on ‘em. It reduces caregiver burden … Sometimes when someone puts food in front of you, you eat it. If you had to get up, and seek food on your own, you wouldn’t (218, occupational therapist).

Discussion and Implications

Our present study explored the multilevel barriers that limit mealtime activities among people with dementia at home as well as the caregiver-led strategies to support mealtime participation. Consistent with existing literature, functional deficits, cognitive impairments, lack of social support, presence of fall and fire hazards, and inconsistent mealtime routines were perceived to reduce participation in meals and independence with eating (Cipriani et al., 2016; Egan et al., 2020; Mole et al., 2021). To overcome these challenges, interview participants endorsed educational trainings and programs that leveraged the position of caregivers and community-based nutrition program providers who can offer mealtime assistance. Though the physical presence of caregivers during mealtimes was strongly encouraged, participants also suggested several strategies that caregivers could implement in advance of mealtimes, particularly for people with dementia who live alone or whose caregivers are only available periodically (e.g., evenings, weekends). Such strategies included reducing auditory and visual distractions, designating a specific dining location, providing written step-by-step instructions for basic meal preparation (e.g., microwave use), ensuring dining spaces are well-lit, removing excess clutter on floors and counters, and preparing easy-to-access foods (or finger foods) that can be consumed throughout the day. Further, for people with dementia who live alone or may not have access to a caregiver, participants also highlighted the potential enhanced role that community-based nutrition program providers could play in improving mealtime participation, especially if nutrition program providers (e.g., home-delivered meal drivers) interact with people with dementia in their own homes. Though one objective of the present study was to elucidate strategies for people with dementia in the home, our findings also align with strategies that have been found to enhance mealtime participation for people with dementia in skilled nursing and residential care settings (Liu et al., 2014, 2015; Liu, Perkhounkova, et al., 2020).

Prior to implementing any of these identified strategies, however, our participants indicated the critical importance of first assessing mealtime barriers to identify the level of assistance required to enhance mealtime participation. Ideally, such an assessment would be completed in the home by a skilled professional (e.g., occupational therapist, speech-language pathologist, dietitian) who is trained to observe mealtime activities and identify areas of breakdown. Determining these areas of breakdown is essential for then developing an individualized care plan that includes strategies caregivers can implement to support people with dementia (Alzheimer’s Association, 2023; Molony et al., 2018). In addition to creating an individualized care plan, skilled professionals can also provide customized in-home training to the caregiver(s) directly in the environment where mealtime activities occur—a substantial advantage compared to the numerous caregiver training programs that occur in community-based group settings (Ghosh et al., 2023).

Though we recognize the value of skilled assessments to determine the level of support people with dementia may need, we also acknowledge the time lag between when assessments are completed by a trained professional and when effective strategies can be implemented by caregivers. To augment these skilled assessments and individualized strategies, we propose that caregivers—that is, the individuals who are most familiar with the needs and behaviors of their family members or friends living with dementia—may be able to systematically identify areas of breakdown during mealtimes with the assistance of tools that enhance caregiver decision making. Such tools should not burden caregivers, nor should they aim to substitute for assessments completed by skilled professionals. Rather, simple “decision support tools” should be intentionally developed to equip caregivers with the skills to immediately identify areas of mealtime breakdown and potential solutions until a professional assessment can be completed (Stacey et al., 2020). Broadly defined, decision support tools provide information about intervention or treatment strategy options, their risks and benefits, and their associated outcomes (Bilodeau et al., 2019; Elwyn et al., 2006).

The use of such decision support tools for caregivers and older adults has garnered growing attention in recent years. A review by Lognon et al. (2022) indicated that decision support tools, aids, and resources can help older adults and their families make informed decisions about chronic disease management, housing and relocation options, driving cessation, and activities to improve quality of life. These tools may take the form of videos, tables, checklists, pictures and photos, algorithms, and organizational charts and may be accompanied by glossaries, manuals, tutorials, and/or hyperlinks to web-based materials (Bilodeau et al., 2019; Lognon et al., 2022). In the context of dementia care, for instance, Hanson et al. (2017) developed an 18-min video-based decisional aid for family caregivers and people with dementia that was effective for improving the quality of communication in end-of-life care. Though decision support tools have also been tailored to mealtime needs (i.e., tube feeding use) for older adults with advanced dementia (Ersek et al., 2014; Pei et al., 2022), these tools have yet to be created for people with dementia in the mild to moderate stages who are still residing at home. Accordingly, there is a prime opportunity to harness findings from the present study, cocreate decision support tools with caregivers and people with dementia, and test their effectiveness for enhancing the eating and mealtime activities of people with dementia in the home. Moreover, in addition to their potential to enhance mealtime activities among people with dementia, such decision support tools may also serve to reduce the “cognitive load” experienced by caregivers who frequently must make decisions on behalf of their care recipients (Lee et al., 2018). Minimizing this cognitive load through decision support tools may hold the added benefit of decreasing caregiver stress and burden as well.

Limitations

Despite the valuable contribution this study makes to the field of community-based dementia care, it is not without limitations. First and foremost, we recognize that our findings represent the perceptions of dementia care professionals and were not drawn from interviews conducted directly with people with dementia or their caregivers. Our team is actively gathering dyad data from people with dementia and their caregivers to expand our present findings and further inform the selection of caregiver-led strategies that can support mealtime participation. We also recognize that our analytic approach (the framework method) did not allow for a more in-depth analysis of mealtime barriers and strategies as if we had conducted a grounded theory or phenomenological study. However, given that our intent was to identify mealtime barriers and strategies that could later guide the care and resources provided to people with dementia and their caregivers, our practical analysis approach was most relevant to address our research question. Lastly, our use of the adapted Socio-Ecological Model for Developing and Implementing Comprehensive Dementia Care did not allow our team to identify potential barriers and strategies at the community, health service, or policy levels. Given our focus on elucidating strategies that could be readily implemented by caregivers, however, our adapted version of this model was best suited to meet our study’s objectives, and findings will inform our future work exploring barriers/strategies at other socio-ecological levels.

Conclusion

For people with dementia, independence with eating and mealtime activities is often threatened by complex barriers at the individual, caregiver, and living environment levels. In response to these barriers, specific areas of breakdown during meals should first be identified, followed by the implementation of caregiver-led strategies to support mealtime participation. With effective decision support tools and resources, caregivers—such as family members, friends, and community-based nutrition program providers—may be well-positioned to assess breakdown areas and provide appropriate assistance to optimize the mealtime needs of people with dementia in their home environments.

Funding

This work was supported by the National Institute on Aging (NIA) of the National Institutes of Health under Award Number U54AG063546, which funds NIA Imbedded Pragmatic Alzheimer’s and AD-Related Dementias Clinical Trials Collaboratory (NIA IMPACT Collaboratory). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Conflict of Interest

None.

Data Availability

Transcribed interview data and detailed analytic procedures are available upon reasonable request of the author. Given the exploratory nature of this work, our study protocol and analysis plan were not preregistered.

Author Contributions

Lisa Juckett (Conceptualization [lead], Data curation [lead], Formal analysis [equal], Funding acquisition [lead], Investigation [lead], Methodology [lead], Project administration [lead], Visualization [lead], Writing—original draft [lead], Writing—review & editing [lead]), Mequeil Howard (Data curation [supporting], Formal analysis [supporting], Project administration [supporting], Writing—review & editing [supporting]), Beth Fields (Methodology [supporting], Writing—review & editing [supporting]), Shannon Jarrott (Methodology [supporting], Supervision [supporting], Writing—review & editing [supporting]), Lorraine Mion (Methodology [supporting], Supervision [supporting], Writing—review & editing [supporting]), and Kali Thomas (Methodology [supporting], Supervision [lead], Writing—review & editing [supporting])