Mealtime Difficulties in Dementia   25  

Melissa Batchelor-Murphy and Sarah Crowgey

OVERVIEW

Florence Nightingale’s first textbook articulated the importance of providing nutritional support for any person requiring nursing care. Her chapters, “Taking Food” and “What Food” provided critical information for improving health outcomes that is still applicable today (Nightingale, 1859a, 1859b). Since the inception of the nursing profession, life expectancy has increased dramatically. As life spans increase, so does the risk for developing cognitive impairment (dementia). Dementia is the fifth leading cause of death for persons older than 65 years, and one third of people 85 years and older have some form of cognitive impairment (Alzheimer’s Association, 2014). By the year 2050, the number of persons with dementia is expected to triple to nearly 14 million, and most of the care needed will be provided by family caregivers (Alzheimer’s Association, 2014). When caregiving demands increase to the point that families can no longer bear the tremendous burden, many persons with dementia will be placed in the nursing home setting. In 2014, 64% of residents in our nation’s nursing homes had some form of dementia (Alzheimer’s Association, 2014).

Malnutrition is a hidden epidemic among older Americans across weight categories (underweight, normal, and obese/overweight) and across care settings (home, health care systems, and long-term care institutions). In the nursing home setting, malnutrition is more prevalent than falls or pressure ulcers (Centers for Medicare & Medicaid Services, 2015); and in hospitals, malnutrition is the biggest risk factor associated with readmission and mortality (Gerontological Society of America, 2014). Interventions to combat this problem fall into five major categories: nutritional supplements, training/education, environment/routine modification, feeding assistance, and mixed interventions (Wen, Jooyoung, & Thomas, 2014). The majority of interdisciplinary studies to date are descriptive and correlational studies, pointing to the need for research in the areas of eating ability, cognitive and behavioral function, and tailoring interventions according to the level of dependence (Aselage, Amella, & Watson, 2011; Wen et al., 2014). Randomized controlled clinical trials are predominant in the category of nutritional supplements and training/education (Aselage et al., 2011; Hanson, Ersek, Gilliam, & Carey, 2011; Wen et al., 2014). In spite of all efforts, current evidence demonstrates that specialized feeding interventions may not impact how long a person with dementia lives or improve function (Hanson et al., 2011). The goals of care should be discussed with patients and families from the time dementia is diagnosed, and throughout the disease trajectory. The reality is that dementia is terminal; and the issue of mealtime difficulties will be a major factor at end of life. Early in the disease process, advance-directive discussions should include information related to hand feeding or tube feeding until death. This allows the caregivers who will eventually be responsible for making the decisions at the end of life to be guided by the person with dementia’s expressed wishes, and these can be clearly communicated to health care providers and documented (Hickman, Keevern, & Hammes, 2015).

Mealtime difficulties include a wide range of issues. In institutions, restrictive diets are sometimes barely palatable and no longer appropriate in the most advanced stages of dementia (Sekerak & Stewart, 2014). The eating environment ranges from a cluttered hospital room to a large, noisy dining room. Staff treat the meal as a task to complete rather than a process to enjoy. As the demographic projections for rates of dementia increase exponentially, formal and informal caregivers alike will continue to need adequate training and support to effectively battle the epidemic of malnutrition (Alzheimer’s Association, 2014). Intervening with supportive nursing care that is evidence based will be integral to reduce costs associated with tube-feeding placement in end-stage dementia. There are financial costs for our health care system, but also costs to the person with dementia related to quality of life, dignity, and discomfort when feeding tubes are used (Finucane, Christmas, & Leff, 2007; Mitchell, Buchanan, Littlehale, & Hamel, 2003). The goals of care should be to promote quality of life until the end of life in this vulnerable population.

BACKGROUND AND STATEMENT OF PROBLEM

There have been several reviews which demonstrate that, even with increased use of feeding tubes in dementia, outcomes, such as aspiration pneumonia and pressure ulcer development, do not improve (Finucane, Christmas, & Travis, 1999; Mitchell, Buchanan, Littlehale, & Hamel, 2004). Hand feeding is the current recommendation (DiBartolo, 2006; Palecek et al., 2010). One feasibility study has been undertaken to prospectively compare hand feeding to tube feeding. It was met with significant challenges at the institutional and individual caregiver levels (Zapka et al., 2014). This study reiterates the emotional difficulties a legally authorized representative faces when presented with the “decision” to tube feed or continue care with hand feeding. The reality with dementia is that it is a terminal diagnosis; the person will die from dementia, not from “starving to death.” Unfortunately, this reality is not well understood by the public. Skillful and educated clinicians must be available to provide the necessary emotional support for family caregivers as the disease reaches the end stage. Although there is no cure for dementia, there are care options—and hand feeding until death is the preferred care option (American Geriatrics Society, 2014; Palecek et al., 2010; Sekerak & Stewart, 2014; Sherman, 2003; Zapka et al., 2014). This chapter details the care options nursing has in its repertoire to provide nutritional support to this vulnerable population across the disease trajectory.

Over the past decade, hand feeding has emerged as the recommendation for persons with dementia (American Geriatrics Society, 2014; Chernoff, 2006; DeLegge, 2009; DiBartolo, 2006; Palmer & Metheny, 2008). Hand feeding is a significant part of managing mealtime difficulties in dementia; yet there is no evidence to support how and when to use any particular hand-feeding technique, and very few practicing clinicians realize that there are three different techniques to choose from. There are three practice-driven hand-feeding techniques—direct hand, hand-over-hand, and hand-under-hand feeding, and evidence is emerging that each of them has its place in daily care (Batchelor-Aselage, Bales, Amella, & Rose, 2014; Batchelor-Murphy, 2015; Batchelor-Murphy, Amella, Zapka, Mueller, & Beck, 2015). Although evidence is forthcoming, patient safety is the ultimate priority and using individual judgment when providing any feeding assistance to a person with dementia should be exercised (Aselage, 2012; Batchelor-Murphy, 2014). How and when each technique should be used depends on the response of the individual person with dementia, his or her functional ability, and individual preferences; and these preferences are typically communicated through nonverbal behaviors (Batchelor-Aselage et al., 2014; Batchelor-Murphy et al., 2015). For an event that occurs at least three times daily, how and when to use any hand-feeding technique is usually based on individual knowledge, beliefs, and perceptions (Pelletier, 2004, 2005). In the literature, only one scientific study has been identified reporting use of a specific hand-feeding technique, hand-over-hand feeding. The hand-feeding technique was not the focus of the study, but when used to provide feeding assistance, meal intake improved (Simmons & Schnelle, 2006).

More emphasis is being placed on preparing staff in nursing homes to safely assist with meals; this has not occurred with equal vigor in acute care or in the community setting where older adults may be the most vulnerable and the most support is needed (Aselage et al., 2011). Only two studies have been identified to teach nursing home staff to improve feeding strategies, and both demonstrated increased time spent providing feeding assistance and increased meal intake after training in research studies (Batchelor-Murphy et al., 2015; Chang & Lin, 2005). Even with training the nursing home staff, the feeding behaviors (e.g., clamping mouth shut, turning head away) demonstrated by persons with dementia increased in both the control and intervention groups in both studies—the trained staff responded differently and meal intake increased in the intervention groups (Batchelor-Murphy et al., 2015; Chang & Lin, 2005; Chang, Wykle, & Madigan, 2006).

When originally studied in the mid-1990s, feeding behaviors, such as turning the head away and clamping the mouth shut, were framed in the literature as “aversive” behaviors, and the typical response by caregivers has been to interpret these behaviors as “resistive,” and the response was to cease feeding attempts (Pelletier, 2004, 2005; Watson, 1993; Watson & Green, 2006). The goals of research have been to decrease these “aversive” or “resistant” types of feeding behaviors. During the same time frame that the primary clinical measurement instrument was developed for “aversive” feeding behaviors, the Edinburgh Feeding Evaluation in Dementia (EdFED) Scale, the movement toward understanding behaviors in dementia as “unmet” needs was also emerging (Algase et al., 1996; Aselage, 2010; Watson & Deary, 1994). Evidence that these behaviors are more likely a form of communication, and the only form of control a person with dementia has over a feeding interaction has emerged with tremendous implications for clinical care (Batchelor-Murphy et al., 2015). For example, if a person with dementia clamps his or her mouth shut, he or she may be trying to communicate the need for a sip of his or her drink. Once the drink is offered, the meal can resume, increasing meal intake. Viewing aversive feeding behaviors as communication of an “unmet” need is a clinical practice and research paradigm shift, and creates the opportunity for caregivers and researchers to respond differently to the behaviors to improve nutritional outcomes (Algase et al., 1996; Batchelor-Murphy et al., 2015).

C3P MODEL FOR ASSESSMENT AND CARE STRATEGIES

The C3P Model is a problem-solving strategy that frames how licensed nurses can think through an identified mealtime difficulty: change the person, change the people, and/or change the place (Amella & Batchelor-Aselage, 2014). The assessment and interventions for this chapter are framed around this model. The recommendations for assessment of mealtime difficulties and nutritional assessment will vary depending on the person with dementia’s place of residence (community, long-term care, or acute care). Assessment is not a static event, especially when an older adult experiences the downward spiral of a life-limiting cognitive or physical illness. As an individual ages, the likelihood of functional impairment increases. With increased frailty, loss of function follows a predictable pattern, with the ability to feed oneself the last activity of daily living (ADL) to be lost (Katz, Downs, Cash, & Grotz, 1970; Katz, Ford, Moskowitz, Jackson, & Jaffe, 1963).

Quite often, mealtime difficulties are first noticed by caregivers when the person with dementia has lost weight. In the nursing home setting, weight loss is quantified as a “5% loss in one month, or 10% loss in past six months” (Centers for Medicare & Medicaid Services, 2013). These parameters are a good “rule of thumb” for community-dwelling elders also. In early dementia, weight loss may be a sign of forgetting to prepare and eat meals. In moderate to advanced dementia, there may be issues more related to functional ability and/or deficits related to the disease process with apraxia, agnosia, and aphasia. As the disease progresses, if meal intake is affected, the general “rules” for dietary restrictions should be carefully weighed for risk versus benefit. Liberalizing diets may increase intake, especially when the goals of care are comfort, quality of life, and dignity (Sekerak & Stewart, 2014).

Change the Person

Physical Assessment and Daily Care Record Review

A head-to-toe physical assessment by a licensed nurse is vital. Investigation should focus on identifying any reversible, physical cause for weight loss. Potential factors at the individual level include but are not limited to pain, infection, medication interaction, abnormal lab values, food preferences, and/or sociocultural considerations. Along with the physical assessment, review any daily care documents available in the medical record. Looking back over several days (or weeks, if available) for patterns of daily intake through the meal intake record may provide information related to the onset of a reversible problem (e.g., urinary tract infection, constipation, new medication cause decrease in meal intake). Additionally, these patterns may provide insight in to the best time of day to target meal intake. For example, if a person consumes 100% of breakfast, and less over the course of the day, one strategy would be to double the breakfast portions to increase the caloric intake at that time of day. Review of lab values for any abnormalities that may be easily remedied, and/or new or unnecessary medications that could be eliminated are important components of a comprehensive geriatric assessment.

In addition to the physical examination and meal intake records, output records for “regular” bowel movements should be reviewed for regularity or changes in bowel habits. Teaching staff to correctly quantify bowel movement size is also a little known but critical assessment skill. Small bowel movements should be quantified as the size of a closed fist, medium bowel movements quantified as half the length of the forearm, and large bowel movements quantified as the full length of the forearm. The rationale for quantifying in this manner is that the full forearm is the same length as the colon. If a person is only outputting a series of small bowel movements every few days, he or she is not emptying the colon—increasing risk for a major constipation episode or fecal impaction, which will impact any person’s appetite.

Change the People

Successful completion of the meal is dependent on who assists or feeds the patient and the interpersonal process that the person uses to interact with the patient (Altus, Engelman, & Mathews, 2002; Amella, 2002). Caregivers who are able to let the patient set the tempo of the meal and allow others to make choices will be more effectual in increasing intake. These studies point to a need for patient-centered approaches that individualize mealtimes for patients and indicate that the responsibility for ensuring this occurs rests with a sensitive and well-trained staff.

Several patient-centered factors have been identified as critical to older adults: Each mealtime was seen as a unique process, and patients are central to the process through their actions not only at meals but also during the time surrounding meals, such as socializing while waiting (Evans, Crogan, & Shultz, 2005; Gibbs-Ward & Keller, 2005). Encouraging the family to eat with the patient can be beneficial; this has been shown to be an effective strategy in nursing homes, increasing body weight and fine motor function in a randomized controlled trial (Altus et al., 2002; Nijs et al., 2006).

Paradigm Shift for Resistive/Aversive Feeding Behaviors

The EdFED instrument was developed around the same time frame that the person-centered care approach was emerging, and the Need-Driven Dementia-Compromised Behavior Model developed to support the notion that “resistive” behaviors were attempts by persons with dementia to communicate an “unmet” need (Algase et al., 1996). When caregivers respond appropriately to these needs, the “resistive” behaviors diminish and care outcomes are achieved more easily (Conti, Voelkl, & McGuire, 2008; Kolanowski, Litaker, Buettner, Moeller, & Costa, 2011; Penrod et al., 2007).

This emerging problem-solving framework is the C3P Model: change the person, change the people, and/or change the place (Amella & Batchelor-Aselage, 2014). This framework is an adaptation of the Social Ecology Model and is used to guide assessment and interventions related to mealtime difficulties. More recent work used the C3P Model, combined with the Need-Driven Dementia-Compromised Behavior Model, and the evidence-based protocol for managing mealtime difficulties. Information was also provided on the practice-based hand-feeding techniques. In this feasibility study, the dementia feeding skills training program taught nursing home staff that these behaviors may be the only form of communication and control a person with dementia has over a meal interaction, and should be responded to as such to increase meal intake (Algase et al., 1996; Amella & Batchelor-Aselage, 2014; Aselage, 2012, 2013; Batchelor-Aselage et al., 2014; Batchelor-Murphy et al., 2015).

Meal Observation of Feeding Behaviors

Assessment of the entire process of eating and mealtimes was divided into the following components: eating behavior assessed by the Level of Eating Independence Scale (LEIS) and the Eating Behavior Scale (EBS); feeding behavior assessed by the EdFED, Feeding Abilities Assessment (FAA), Self-Feeding Assessment Tool of Osborn and Marshall, the McGill Ingestive Skills Assessment (MISA), Feeding Behavior Inventory, the Feeding Traceline Technique (FTLT), Feeding Dependency Scale (FDS), and the Aversive Feeding Inventory; and meal behavior assessed by the Meal Assistance Screening Tool (MAST) and Structured Meal Observation (Aselage, 2010). This critical appraisal of instruments determined that most are primarily used in research, and most are setting specific, with an emphasis on either long-term care or rehabilitation settings—few have been used in the community; these are often lengthy instruments to administer and may not be practical in a clinical setting.

Only the EdFED has been used across acute and long-term care settings and in the community, has strong psychometrics, and appears to be the most practical across domains (Watson & Deary, 1994; Watson, Green, & Legg, 2001). It was designed to evaluate individuals with dementia—clearly not all older persons having difficulties with meals, but in all likelihood a significant portion. The EdFED focuses on six feeding behaviors that are often interpreted as “resistance” by formal and informal caregivers (e.g., clamping mouth shut, turning head away, refusing to open mouth, letting food fall from mouth, spillage, and spitting food; Watson, 1993, 1994a, 1994b).

Change the Place

Because of the strong social and cultural components of eating, where one dines is sometimes as important as what one eats. Nurses should simply ask themselves, “Would I want to eat my next meal where this person is eating?” If the answer is no, then steps should be taken to improve the dining environment. Small changes in the dining environment may make large improvements in a patient’s capacity and motivation to eat or be fed. It is unfortunate that, in institutions, the mealtime experience is often not focused on individual needs (Sydner & Fjellström, 2005). External factors, such as decreased noise, increased lighting, and playing relaxing music, at meals positively influenced appetite (Hicks-Moore, 2005; McDaniel, Hunt, Hackes, & Pope, 2001). Using contrasting colors (foreground/background) in tableware and tablecloth, and always placing dishes in similar positions may help persons with low vision be more independent (Ellexson, 2004). Proper positioning using the appropriate, supportive chair (instead of eating in bed or sitting on the bedside) promotes good eating posture (Rappl & Jones, 2000). Meals eaten in small groups—much like family dining—are considered an ideal method; however, this intervention had more effect on staff’s perception of meals and willingness to spend time in the process of attending to meals (Kofod & Birkemose, 2004).

Hand-Feeding Assistance

For a video demonstration depicting the three feeding techniques, please visit the website: youtube/NYzH_B7XfjY; or go to YouTube and search “Hand Feeding Techniques in Dementia.” Photographs of the differences are also available (Batchelor-Aselage et al., 2014).

Fine motor ability declines with aging, and one area that specifically relates to the ability to feed oneself is grip strength and the ability to coordinate motor movements. Although motor decline is a normal part of aging, older adults with dementia do experience more severe decline when compared to an unaffected age group (Rogers & Jarrott, 2008; Scherder, Dekker, & Eggermont, 2008). As cognitive impairment progresses, older adults lose fine motor ability before they lose gross motor ability (Bottiggi & Harrison, 2008). Assessing gross and fine motor functional ability is a critical need when making decisions about how much assistance to provide to a person with dementia and which hand-feeding technique may be more appropriate. Formal and informal caregivers should promote self-feeding as much as possible, for as long as possible, and only offer the least amount of support necessary to maximize meal intake.

The hand-feeding techniques are labeled according to where the caregiver (feeding assistant) places his or her hand in relation to the person he or she is assisting. When first learning about these techniques, it is helpful to do a “role play” with a partner. Each person can alternate being in the role of the feeding assistant and the person with dementia. Kinesthetically experiencing each technique oneself provides insight for the feeding assistant as to how the person with dementia may perceive that feeding assistance—these hand-feeding techniques feel differently in the areas of feeling as though you have control over the movement and/or if someone is forcing your hand toward your face. The hand-feeding techniques may be used interchangeably during a mealtime. Decisions on which technique to use should consider the upper extremity range of motion the person with dementia has, whether or not the person has contractures of the hands, and/or which technique appears to be the most comfortable to the person with dementia. Every person with dementia is an individual, and clinical judgment should be exercised to promote safety, comfort, dignity, and quality of life during every meal interaction.

For the hand-over-hand and hand-under-hand techniques, the feeding assistant should first assess which hand is the dominant hand of the person with dementia. The feeding assistant should sit on the person with dementia’s dominant side, and use the same hand to provide assistance (e.g., if the person with dementia is right-handed, the feeding assistant should sit on the right side and use his or her right hand to provide assistance). These two techniques are more challenging if attempting to provide feeding assistance while the person with dementia is in bed. It is recommended that the person with dementia be in a chair during mealtimes as often as possible.

Hand-Over-Hand Feeding

For the hand-over-hand feeding technique, the feeding assistant places his or her hand over the hand of the person being assisted with the meals. The person with dementia must still possess the fine motor ability to hold the utensil, and have the upper extremity range of motion and strength to move the utensil with food from the plate to the mouth. This technique may also be used to stabilize any hand tremor that results in spillage of food off the utensil. The feeding assistant may need to keep his or her hand over the person with dementia’s hand all the way through the feeding cycle, or just long enough to initiate the movement of the utensil to the mouth. If the person with dementia pushes away the feeding assistance, this behavior may be because he or she is capable of performing the movement on his or her own and/or he or she feels as though you are forcing the movement.

Hand-Under-Hand Feeding

In the hand-under-hand feeding technique, the caregiver (feeding assistant) holds the utensil, and places his or her hand under the hand of the person with dementia (Batchelor-Aselage, Bales, Amella, & Rose, 2014; Snow, 2015). This technique is most likely to be effective if the person with dementia is losing the fine motor ability of being able to hold the utensil on his or her own. From the perspective of the person with dementia, this will likely feel as though he or she has control over the movement and that he or she initiated the movement. In addition to the verbal and visual cues that should be provided, the hand-under-hand technique may serve as a motor cue. This motor cue may allow a person who has lost language ability to understand that the feeding assistant is “really” that person feeding himself or herself. The person with dementia may actively engage in this technique by pulling the feeding assistant’s hand and/or the feeding assistant’s forearm.

Direct Hand Feeding

This technique should be reserved for a person who has progressed in the disease process of dementia to the point that he or she is totally dependent on care. Rather than being the first line of assistance, direct hand feeding makes the experience of eating a completely passive event for the person with dementia. The feeding assistant using this technique does all of the work, with no active engagement of the person he or she is assisting.

Role of Nutritional Supplements

Nutritional supplements include high-calorie supplements and appetite stimulants (Hanson et al., 2011). Although there is evidence that nutritional supplements improve body weight by 1 to 4 pounds in persons with dementia, there is less evidence that these supplements reduce risk of infections or promote wound healing (Hanson et al., 2011). In addition, these supplements have not demonstrated improvement in function or improved life expectancy (Hanson et al., 2011). Nutritional supplements are expensive, and between 55% and 65% of the time are not actually consumed by the person with dementia (Allen, Methven, & Gosney, 2014; Kayser-Jones et al., 1998). A recent randomized controlled clinical trial indicated that when offered the supplement in a glass or beaker rather than inserting a straw into a container, persons with dementia did increase the amount of the supplements consumed (Allen et al., 2014). Even with this delivery modification, supplement consumption averaged 65%. Nutritional supplements given midmorning have also been associated with decreasing lunch intake (Young, Greenwood, van Reekum, & Binns, 2004).

The interdisciplinary team may have neglected to perform a thorough assessment of underlying issues prior to using nutritional supplements. Potentially reversible conditions, such as adequate staffing and lack of supervision, poor oral health, or identifying other factors requiring intervention such as dysphagia, should be investigated (Kayser-Jones et al., 1998). This in-depth assessment into the etiology of a mealtime difficulty should occur, and results documented prior to using a nutritional supplement. Real food should be offered first, with deliberate attention paid to providing adequate support in order to achieve meal intake, based on individual preferences and functional ability, as outlined in this chapter.

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