Dysphagia in Persons with Dementia: The Dual Diagnosis Challenge “While there is life, we must provide quality of life.” Paul Raia Swallowing and cognition have always been considered two major contributors to quality of life. It's interesting to note, for example, when someone asks for directions, instructions are often provided by using favorite restaurants as landmarks. It is customary ... Article
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Article  |   December 28, 2016
Dysphagia in Persons with Dementia: The Dual Diagnosis Challenge
Author Affiliations & Notes
  • Michelle Tristani
    Resident Services, Benchmark Senior Living, Boston, MA
  • Disclosures:
    Disclosures: ×
  • Financial: Michelle Tristani has no financial interests related to the content of this article.
    Financial: Michelle Tristani has no financial interests related to the content of this article.×
  • Nonfinancial: Michelle Tristani has no nonfinancial interests related to the content of this article.
    Nonfinancial: Michelle Tristani has no nonfinancial interests related to the content of this article.×
Article Information
Swallowing, Dysphagia & Feeding Disorders / Special Populations / Older Adults & Aging / Part 3
Article   |   December 28, 2016
Dysphagia in Persons with Dementia: The Dual Diagnosis Challenge
Perspectives of the ASHA Special Interest Groups, December 2016, Vol. 1, 105-116. doi:10.1044/persp1.SIG15.105
History: Revised March 5, 2016 , Received September 23, 2016 , Accepted November 1, 2016
Perspectives of the ASHA Special Interest Groups, December 2016, Vol. 1, 105-116. doi:10.1044/persp1.SIG15.105
History: Revised March 5, 2016; Received September 23, 2016; Accepted November 1, 2016

“While there is life, we must provide quality of life.” Paul Raia

Swallowing and cognition have always been considered two major contributors to quality of life. It's interesting to note, for example, when someone asks for directions, instructions are often provided by using favorite restaurants as landmarks. It is customary for many people spend significant amounts of time and effort accessing executive functions to plan, organize, and cook daily meals as well as to prepare for special occasions and holidays. The enjoyment experienced by sharing a meal with friends and family members is positively anticipated.

The evaluation of functional and quality of life outcomes continues to emerge as a vital component of state-of-the-art health care. Specific to the field of medical speech-language pathology, any discussions pertaining to dementia and/or dysphagia bring quality of life issues to the forefront. Dysphagia as a sequelae of dementia is understood to have significant negative impacts on quality of life due to the challenges associated with its management in persons with progressive, degenerative neuropathology and resulting cognitive, sensory, and motor decline.

In the absence of standardized guidelines to address the dual diagnosis of dysphagia and dementia, the clinician is challenged to design and implement a comprehensive, systematic clinical pathway. Critical thinking within such a pathway must account for the trend away from enteral feeding for those with advanced stage dementia and toward implementation of techniques to facilitate safe consumption of meals or oral intake of food and drink for pleasure. In this manner, the speech-language pathologist (SLP) facilitates and measures a positive impact on the person with dementia and their quality of life. The objectives of this article are to identify challenges associated with the dual diagnosis of dysphagia and dementia as well as to empower clinicians to use a comprehensive, systematic clinical pathway to preserve safety, nutrition, hydration, and subsequently, quality of life.
Most recently, the field of swallowing and swallowing disorders has highlighted the significance of ensuring preservation of both swallowing safety and quality of life in those diagnosed with dementia. The difficulty remains in determining the most appropriate protocols for assessment and management of the swallowing disorder. Diffuse cortical damage or sub-cortical involvement are consistent with the diagnosis of dementia and lends itself to a heightened risk of impaired swallowing function. Unfortunately, given the complex and variable neuropathology associated with dementia, swallowing management is often complicated by the need to carefully balance swallowing safety with quality of life. Although to date, there is no gold standard for managing dysphagia in persons with dementia, SLPs must utilize comprehensive clinical reasoning skills to tailor effective recommendations to the unique needs of the individual.
Prevalence of the Dual Diagnosis: Dysphagia and Dementia
The Alzheimer's Association 2015  Facts and Figures (Alzheimer's Association, 2015) projects that as the population of persons over age 65 increases in the United States, the number of those with Alzheimer's disease is estimated to reach 7.1 million by 2025—a 40 percent increase from the 5.1 million affected in 2015. It is estimated that 60–80% of long-term care residents will have been diagnosed with dementia (Marcantonio, 2000). According to Arrighi, Neumann, Lieberburg, & Townsend (2010), On average, a person with Alzheimer's disease will spend more years (40 percent of the total number of years with Alzheimer's) in the most severe stage of the disease than in any other stage. Furthermore, experience tells us that cognitive-based dysphagia most often occurs in moderate/moderate-severe dementia.
Prevalence data is difficult to obtain. The major complicating factor is that the different types of dementia are usually not reported in research studies. In practice, the clinician is often limited to noting a “history of dementia” in the patient's medical record. No details on severity or type are provided. While SLPs work to further identify patterns of dysphagia in this population, differences by type of dementia continue to be increasingly difficult. There is some data to suggest differences in swallow physiology breakdown by dementia type, as suggested by Easterling and Robbins (2008), who reported on differences between persons with dementia of the Alzheimer's type and those with fronto-temporal dementia.
Exactly what percentage of persons with dementia also present with dysphagia? According to Alagiakrishnan, Bhanji, & Kurian (2013), the numbers range from 13–57%. According to Easterling and Robbins (2008), an estimated 45% of institutionalized persons present with the dual diagnosis. While an exact prevalence of dementia and dysphagia has not been reliably reported, the need is clearly mounting. Therefore, implementation of an organized protocol for managing dysphagia in persons with dementia is in high demand and its impact will be far-reaching.
Understanding the Cognitive Hierarchy
If you are confused about the confused, you are not alone. As SLPs, we tend to compartmentalize information. Levels of cognitive skill are supported by a foundation consisting of arousal, alertness, awareness, consciousness, attention, and concentration (see Figure 1). The second level is comprised of short-term and long-term memory. The third level includes organization, sequencing, and problem solving. The fourth, and highest, encompasses executive functions, reasoning, judgment, and insight. Cognitive skills build upon one another. If the core or foundation level cognitive skills are impaired, it is likely all higher level cognitive skills will be deficient. Standardized cognitive tests that require “sit down” administration for 30 minutes or more are not conducive to effective assessment for persons with middle- to late-stage dementia. Instead, cognitive assessment for this population must encompass interdisciplinary consultations, scales, questionnaires, skilled observations, and standardized and non-standardized subtests identifying strengths and challenges within the cognitive hierarchy. The intent of this multi-faceted, functional assessment is to identify cognitive impairments and individualized preserved abilities to maximize daily communication, safety, dignity, and quality of life (American Speech-Language-Hearing Association, 2007).
Figure 1.

The Cognitive Skills Hierarchy (Tristani & Riquelme, 2015)

 The Cognitive Skills Hierarchy (Tristani & Riquelme, 2015)
Figure 1.

The Cognitive Skills Hierarchy (Tristani & Riquelme, 2015)

×
Assessment of Dysphagia and Cognitive Symptoms by Stage of Dementia
Clinicians may select to administer a variety of standardized swallowing scales and/or assessments to complete the clinical swallow examination. Among the more common approaches are: the Mann Assessment of Swallowing Ability (MASA; Mann, 2002); Swallowing Ability and Function Evaluation (SAFE; Kipping & Swain, 2003); Functional Oral Intake Scale (FOIS; Crary, Carnaby-Mann, & Groher, 2005); and the Eating Assessment Tool (EAT-10; Belafsky et al., 2008). Most recently, another tool has gained attention, the Environment & Communication Assessment Toolkit (ECAT) for Dementia Care (Brush & Calkins, 2012). It is a comprehensive environmental analysis and a valuable tool to interpret visual and auditory external factors that may require modification to facilitate a safe, social, and nourishing mealtime. The ECAT takes into account activity performance for Activities of Daily Living and Instrumental Activities of Daily Living in both personal and public spaces, enhancing individual functional performance through recommended environmental modifications. In addition to these dysphagia and environmental evaluations, there are few other assessment tools available that address dysphagia in persons with dementia. The Edinburgh Feeding Evaluation in Dementia Scale (Watson, Macdonald, & Mcready, 2001) is an 11-item observational scale to evaluate persons with late stage dementia. An additional evaluation, Successful EATing (Boylston & O'Day, 1999), incorporates assessment of general cognitive and language skills, environment, approach, and texture. Although both have advantages in garnering cognitive and swallowing abilities separately, neither test focuses on assessing the effectiveness of mealtime behavioral and cognitive strategies or cognitive based dysphagia techniques; neither examines the combined effects of dual diagnosis on an individual's ability to safely and effectively sustain nutrition and hydration for pleasure/comfort or quality of life (See Table 1).
Table 1. Analysis of Assessment Tools
Analysis of Assessment Tools×
Dysphagia – Dementia Component Area Addressed
Quality of Life Hydration and Nutrition Oral and Pharyngeal Swallow Skills Cognition Environmental
Dementia Mealtime Assessment Tool (DMAT)
Mann Assessment of Swallowing Ability (MASA)
Swallowing Ability and Function Evaluation (SAFE)
Successful EATing
Primarily oral stage
Functional Oral Intake Scale (FOIS)
Eating Assessment Tool (EAT-10)
Via self assessment
Edinburgh Feeding Evaluation in Dementia Questionnaire (EdFED-Q)
Primarily oral stage
Environmental and Communication Assessment Toolkit (ECAT
Quality of Life Measures: SWAL-QOL selected sections
Via self assessment
Table 1. Analysis of Assessment Tools
Analysis of Assessment Tools×
Dysphagia – Dementia Component Area Addressed
Quality of Life Hydration and Nutrition Oral and Pharyngeal Swallow Skills Cognition Environmental
Dementia Mealtime Assessment Tool (DMAT)
Mann Assessment of Swallowing Ability (MASA)
Swallowing Ability and Function Evaluation (SAFE)
Successful EATing
Primarily oral stage
Functional Oral Intake Scale (FOIS)
Eating Assessment Tool (EAT-10)
Via self assessment
Edinburgh Feeding Evaluation in Dementia Questionnaire (EdFED-Q)
Primarily oral stage
Environmental and Communication Assessment Toolkit (ECAT
Quality of Life Measures: SWAL-QOL selected sections
Via self assessment
×
Family members may say, “It seems he has forgotten how to eat.” The accuracy of this statement appears questionable at best after reviewing the available literature. Marked changes in feeding and swallowing behaviors are mostly seen in the middle and late stages of dementia, due to the known neuropathological changes. So it is not so much “forgetting how to eat” (as in the sequential steps of hand to mouth and oropharyngeal bolus transit), as it is the neuropathology that alters both the transmission and reception of sensory information, leaving motor responsibilities without a GPS. Through employment of a systematic clinical pathway (including assessments and scales reviewed) addressing the dual diagnosis of dysphagia and dementia and supporting a safe, effective oral feeding option, clinicians may anticipate reduced negative emotions from family and caregivers (i.e., guilt, regret, helplessness) with acknowledgement and respect for cultural and religious beliefs. The progressive impact of dementia on swallowing is outlined in Table 2 and may serve as a checklist of assessment components for persons with dementia and dysphagia.
Table 2. The Progressive Impact of Dementia on Swallowing
The Progressive Impact of Dementia on Swallowing×
Early Stage Dementia Middle Stage Dementia Advanced / Late / End Stage Dementia
Mild cognitive impairment; Moderate cognitive impairment Severe Cognitive Impairment
Awareness of cognitive deficits
Taste and smell dysfunction begins Taste and smell compromised Taste and smell compromised
Wayfinding mildly impaired Wandering and motor restlessness – additional calories required if ambulatory Ambulation is possible with assist;
Bed-bound at end stage
Attention - mildly impaired;intermittently distracted throughout meals; may forget meals consumed Attention – moderately impaired; periodically or often distracted throughout meals Attention – moderate-severely impaired; often distracted throughout meals
Self-feeding ability is preserved Self-feeding ability is preserved; lower middle stage may show difficulty with utensils Self-feeding ability is compromised; maximal to total assist for feeding
Independent with oral care Oral care requires assistance Dependent for oral care
Medications and polypharmacy considerations impacting dual diagnosis Medications and polypharmacy considerations impacting dual diagnosis Medications and polypharmacy considerations impacting dual diagnosis
Decreased nutrition and hydration due to Mild Cognitive Impairment (MCI) and depression Decreased nutrition and hydration due to attention deficits, cognitive-behavioral symptoms, and the onset of cognitive based dysphagia Decreased nutrition and hydration due to oral apraxia, oral acceptance and oral preparatory deficits
Adequate saliva production Decreased saliva production – Xerostomia risk Decreased saliva production – Xerostomia risk
No texture aversion Possible texture aversion Possible texture aversion
Visual Scanning of Environment Visual Scanning of Environment Visual Scanning of Environment
– 2′ to 4′ ranging from objects in plain sight to increased awareness of people/objects to the right and left - tunnel vision with 14-24″ in front -world continues to shrink, optimal task presentation now 7-14″ from face with 2′ diameter; stimulus must be striking and valued
Pharyngeal phase often WFL for persons with dementia in the absence of additional co-morbidities Potential pharyngeal phase involvement Pharyngeal phase deficits likely with high aspiration risk
Positioning not impacted Positioning challenges may be present Positioning challenges due to possible neck, extremity contractures
Table 2. The Progressive Impact of Dementia on Swallowing
The Progressive Impact of Dementia on Swallowing×
Early Stage Dementia Middle Stage Dementia Advanced / Late / End Stage Dementia
Mild cognitive impairment; Moderate cognitive impairment Severe Cognitive Impairment
Awareness of cognitive deficits
Taste and smell dysfunction begins Taste and smell compromised Taste and smell compromised
Wayfinding mildly impaired Wandering and motor restlessness – additional calories required if ambulatory Ambulation is possible with assist;
Bed-bound at end stage
Attention - mildly impaired;intermittently distracted throughout meals; may forget meals consumed Attention – moderately impaired; periodically or often distracted throughout meals Attention – moderate-severely impaired; often distracted throughout meals
Self-feeding ability is preserved Self-feeding ability is preserved; lower middle stage may show difficulty with utensils Self-feeding ability is compromised; maximal to total assist for feeding
Independent with oral care Oral care requires assistance Dependent for oral care
Medications and polypharmacy considerations impacting dual diagnosis Medications and polypharmacy considerations impacting dual diagnosis Medications and polypharmacy considerations impacting dual diagnosis
Decreased nutrition and hydration due to Mild Cognitive Impairment (MCI) and depression Decreased nutrition and hydration due to attention deficits, cognitive-behavioral symptoms, and the onset of cognitive based dysphagia Decreased nutrition and hydration due to oral apraxia, oral acceptance and oral preparatory deficits
Adequate saliva production Decreased saliva production – Xerostomia risk Decreased saliva production – Xerostomia risk
No texture aversion Possible texture aversion Possible texture aversion
Visual Scanning of Environment Visual Scanning of Environment Visual Scanning of Environment
– 2′ to 4′ ranging from objects in plain sight to increased awareness of people/objects to the right and left - tunnel vision with 14-24″ in front -world continues to shrink, optimal task presentation now 7-14″ from face with 2′ diameter; stimulus must be striking and valued
Pharyngeal phase often WFL for persons with dementia in the absence of additional co-morbidities Potential pharyngeal phase involvement Pharyngeal phase deficits likely with high aspiration risk
Positioning not impacted Positioning challenges may be present Positioning challenges due to possible neck, extremity contractures
×
Sensory/Motor Effects on Swallowing in Dementia
In Steele and Miller's “Sensory Input Pathways and Mechanisms in Swallowing: A Review” (2010), we are prompted to consider and investigate the sensory pathways facilitating motor control and response in order to maximize swallowing efficiency, safety, and quality of life. Oral acceptance, bolus formation, bolus control, and retropulsion are the primary challenging areas for persons with moderate and moderate-to-severe dementia. Sensory information received from bolus texture, temperature, taste, and smell is transferred to the trigeminal sensory nuclei. It is this window of opportunity we must capitalize on to compensate for diminished sensory interpretation and resulting motor response. To that end, the extremes of texture, temperature, taste, and smell assist in achieving this otherwise compromised motor response (Steele & Miller, 2010). Specifically, cranial nerve V, the Trigeminal nerve, serves as the GPS for sensory pathways within its maxillary and mandibular divisions and receives afferent sensory information distributed throughout the Trigeminal system generating a physiologically effective motor response. It is therefore advantageous to incorporate specific Trigeminal nerve (V) assessment as part of our Clinical Swallow Exam in persons with dementia. Trigeminal nerve assessment would include either voluntary or reflexive tasks, determining jaw opening and closing, jaw forward and back, and chewing motion (Carnaby, 2012). This area requires further investigation for the dual diagnosis population.
Olfactory and visual stimuli prove to be further effective in promotion of salivation and therefore contribute positively to timely bolus formation and retropulsion (Steele & Miller, 2010). Pre-meal olfactory stimuli and initial anticipatory taste represent two primary factors influencing increased salivation and subsequent effective bolus formation, control, and retropulsion. Persons with dementia, even during the early stages, experience compromised smell and taste. Although the degree to which sensory information activates motor response remains uncertain, SLPs are encouraged to probe the effects of heightened sensory input with strong smell and taste (as well as texture and temperature) information to increase the opportunity for persons with dementia to recognize, interpret, and react to the bolus.
The intent of providing greater sensory input is to elicit robust motor responses and improve the effectiveness and safety of both the oral and pharyngeal phases of swallowing. Sensory receptors, located in the oral mucosa, include chemoreceptors (taste, smell, pain), mechanoreceptors (touch, kinesthesia), and thermoreceptors (temperature, pain). There are thousands of receptors to capitalize on particularly within the anterior region of the oral cavity. It is because of the multiplicity of sensory receptors that approaches including carbonation, cold, and/or sour boluses are thought to be beneficial for eliciting changes in swallowing motor responses (Wallace, 2015). Furthermore, the application of pressure with adaptive tools such as the maroon spoons is intended to stimulate mechanoreceptors with the goal of eliciting effective oral preparatory and oral phase behaviors (Lewis & Liss, 2015).
Artificial Nutrition and Hydration in Advanced Dementia
Self-feeding is one of the skills that remains with us until the later stages of dementia. When persons with dementia are no longer able to self-feed it is a sign of entering the later stages of the disease (Mitchell et al., 2009; Palecek et al., 2010). A vast number of studies have shown that feeding tubes do not prevent aspiration or aspiration pneumonia in persons with dementia (Finucane, Christmas, & Travis, 1999  and Plonk, 2005). Concerns with tube feeding in persons with dementia are multifold and include: gastro-intestinal illness; reflux and risk of aspiration; tendency to pull at the tube; restraints; skin infections; and clogged tubes. An additional connected risk artificial nutrition and hydration poses to individuals at end of life stage is the potential for fluid overload leading to overall discomfort, peripheral edema, pulmonary congestion, pulmonary edema, and other complications (Buiting et al., 2007; Gillick, 2000; Good, Richard, Syrmis, Jenkins-Marsh, & Stephens, 2014). For many patients with advanced dementia the burdens of artificial nutrition and hydration outweigh its benefits (Plonk, 2005). There is an absence of evidence demonstrating that enteral feeding for persons with advanced dementia prolongs survival, prevents aspiration pneumonia, reduces the risk of pressure sores, improves function, or provides comfort. Per the work of Finucane, Christmas, & Travis, (1999), survival rates for individuals with advanced dementia post initiation of enteral feeding were 80% at 1 month, 50% at 6 months, and 38–40% after 1 year.
The American Academy of Hospice and Palliative Medicine offers a valuable Statement on Artificial Nutrition and Hydration (ANH) Near End of Life (American Academy of Hospice and Palliative Medicine, 2013) to assist all practitioners, caregivers, and patients in a challenging, culturally individualized, and emotionally laden decision. The SLP is one of several important contributing professionals to this interdisciplinary team decision. Not only do we offer details of swallow physiology, severity, and etiology, but we are also able to discuss prognosis on swallowing and cognition, as well as play a role in counseling. Ultimately, it is the patient, family, and medical team that make the decision for or against initiation of artificial nutrition and hydration.
Clinical Pathway for Swallowing in Persons with Dementia
Management of Dysphagia in Persons with Dementia
As we take a deep dive into the effectiveness of dysphagia compensatory techniques for this population, it is beneficial to categorize them as follows:
Management of cognitive challenges during mealtime
  • - Alertness during mealtime
  • - Environmental modifications
  • - Attention and behavioral modifications
Management of cognitive-based dysphagia
  • - Oral acceptance, oral apraxia, oral preparatory techniques
  • - Adaptive equipment
A multitude of techniques may be utilized in addition or as an alternative to diet texture modification. The evidence behind each of them is variable and is in need of further investigation.
The term “effective” equates to successful, valid, capable, and facilitating a probable outcome. After trialing a technique, we need to clinically reason if it is effective enough for the patient with dementia to recommend it for caregiver use. Will the technique assist the person with dementia to safely sustain nutrition and hydration needs? If not, will the technique assist in preserving quality of life through consumption of comfort/pleasure PO intake? If the clinician answers “yes” to either question, then the technique makes “the cut” and should be recommended to caregivers.
Management of Cognitive Challenges During Mealtime
Alertness During Mealtime
Alertness is a prerequisite for safe oral intake, especially when the patient is dependent. In order to confirm satisfactory alertness level for safe oral consumption, it is beneficial to determine, even if an individual's eyes are closed, if he or she is able to follow one-step commands or answer questions contingently. If so, alertness may be sufficient to allow for safe and effective intake. Additional considerations include providing snacks, nutritional supplements, and additional portions of food when alertness is at its optimum level. This will allow for proper maintenance of nutrition even in the presence of variable periods of alertness throughout the day. This ensures flexibility with the routine and sequence of feeding (Riquelme & Tristani, 2014, 2015).
Mealtime Environmental Modifications
Determining the optimal mealtime setting is the next step to successful attention to mealtime. Whereas some patients can tolerate eating in a large dining room, others will require a small group of two to four persons at their table. Visual organization and simplification approaches such as limiting the meal tray visual presentation can be very effective in securing and sustaining attention. Assessing the place setting is another valuable component that may include establishing color contrast between table and plate/cup and limiting meal tray visual presentation to two food/drink items at a time (Amella, 2002; Brush & Calkins, 2012; Chang & Roberts, 2008). Minimizing pre-meal wait time, increasing ambient light, and offering music to evoke a positive emotion may also be trialed to ascertain effectiveness (Garre-Olmo et al., 2012).
Attention and Behavioral Modification
Techniques focusing on impaired attention and behavior may consist of utilizing: place cards or photos for designated seating, square versus round tables to differentiate place settings and personal space, receipts for “payment” of meals and encouraging participation in mealtime set up. If an individual demonstrates anxiety during meals, it is important to determine potential triggers of anxiety or agitation. An interdisciplinary behavioral log can assist in analyzing and tracking patterns. Identifying components such as with whom, what, when, and where the anxiety or agitation occurs are pre-requisites to resolution. In addition, recognizing activities prior to escalating anxiety and caregiver response to the anxiety behavior may be considered. Once anxiety triggers are confirmed, modifications can be implemented successfully. It is also valuable to ask family members and caregivers about preferences an individual may have had prior to the onset of dementia. For example, some patients may have adopted a specific sequence of food and drink all their lives, based on habit or cultural preference or both. Provision of contextual cues to comprehend the mealtime setting—visual, olfactory, auditory, kinesthetic—are worthwhile. Persons with dementia who wander may not be able to stop to eat for enough time, if at all, to consume adequate portions of their meal. In these situations, it is best to evaluate the individual with finger foods. If the person with dementia has strong oral and pharyngeal swallowing skills, provision of finger foods while ambulating may be an effective approach to sustaining nutritional needs.
Management of Cognitive-Based Dysphagia
Oral Acceptance, Oral Apraxia, Oral Preparatory Skills
When a person with dementia does not open his or her mouth in response to a spoon or cup presentation of a well-liked food or drink, what is the etiology? Is it an oral apraxia with its traditional definition of: “difficulty voluntarily moving the muscles of the lips, throat, soft palate and tongue for purposes other than speech, such as smiling or whistling […] difficulty carrying out commands such as blowing a kiss, opening the mouth or puffing the cheeks” (American Stroke Association, 2013, para. 4)? During the Clinical Swallowing Exam, reduced oral acceptance does in fact resemble an oral apraxia or at least suggest reduced motor initiation. At present, we do not have definitive evidence confirming or rejecting the hypothesis that a true oral apraxia is present at the middle and late stage of dementia and thus negatively impacting oral acceptance, oral preparatory and oral phase swallowing skills.
Techniques addressing oral acceptance and preparatory skills in persons with dementia include: bypassing oral acceptance deficits via cup presentation of a nourishing full liquid diet or blended/pourable pureed diet; provision of multimodality and multisensory cues—tactile, visual, verbal cues and modeling; self-feeding to facilitate automatic oral acceptance, oral prep, and oral stage functions; use of distraction and redirection; and providing increased time between bites and sips. Beckman (2015)  introduced “compensatory handling techniques” that have been constructive in improving oral acceptance and oral transit, alleviating tonic bite, and minimizing anterior spillage of solids/liquids for persons at middle- and late-stage dementia.
Oral stasis, the cessation of mastication and bolus manipulation, is also commonly seen in patients with moderate-severe dementia. Thermal gustatory stimulation methods may be effective to compensate for reduced sensory integration resulting in difficulty with bolus manipulation, formation, and retropulsion. Alternating extreme tastes/temperatures versus bland tastes/temperatures (cold, sour, sweet, carbonated) throughout the meal may be beneficial for many persons exhibiting oral stasis (Kindell, 2002). In addition, using a coated, cold, and/or metal spoon in between full bolus presentations may be advantageous (Pauloski et al., 2012). The suggestion of a swallow apraxia has been posed. No data is available in the form of acceptable evidence to review a comprehensive definition and/or approaches to reduce the “oral bolus hold” often seen in patients with more advanced dementia.
Adaptive Equipment
An array of equipment has emerged in recent years to assist with oral acceptance and oral phase swallowing dysfunction. It is often challenging to differentiate between products that are successful, those that do not make a difference either way, or worse yet, those that negatively impact oral phase swallow response. Utilizing our clinical reasoning skills to determine if an adaptive spoon, cup, or positioning device will prove effective is completed through analysis of swallowing and cognition strengths and impairments and trial and error. Through collaboration with occupational therapists, and sometimes physical therapists, we can trial and investigate feeding and positioning devices for the head, neck, and trunk that will assist with proper alignment to facilitate improved ability to safely manage a bolus. This will allow for improving nutrition and hydration, or maximize safety for recreational intake of snacks and small portions of favorite solid and liquid items—enhancing quality of life at advanced stages of dementia and end of life (Tristani & Riquelme, 2015; See Figure 2).
Figure 2.

Clinical Pathway for Swallowing in Persons with Middle and Late Stage Dementia

 Clinical Pathway for Swallowing in Persons with Middle and Late Stage Dementia
Figure 2.

Clinical Pathway for Swallowing in Persons with Middle and Late Stage Dementia

×
Concluding Remarks
A clinical pathway to preserve quality of life for persons with the dual diagnosis of dysphagia and dementia must include balancing the risks and benefits associated with both ANH and PO nutrition and hydration. This clinical pathway may include a comprehensive dual diagnosis assessment and implementation of the compensatory techniques outlined. The proposed pathway may offer a safe, effective, and dignified alternative to that of artificial nutrition and hydration (ANH) and reduce the use of NPO status as appropriate. The complexity of conducting a comprehensive assessment of the swallow mechanism and overall intake of foods in this population cannot be sufficiently stressed. The opportunity to generate an extensive and positive impact for the vast population of persons with advanced stage dementia is very apparent. To that end, we look forward to and support future research that systematically investigates the effectiveness of the multitude of compensatory techniques for cognitive challenges during mealtime and cognitive-based dysphagia in persons with dementia.
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Figure 1.

The Cognitive Skills Hierarchy (Tristani & Riquelme, 2015)

 The Cognitive Skills Hierarchy (Tristani & Riquelme, 2015)
Figure 1.

The Cognitive Skills Hierarchy (Tristani & Riquelme, 2015)

×
Figure 2.

Clinical Pathway for Swallowing in Persons with Middle and Late Stage Dementia

 Clinical Pathway for Swallowing in Persons with Middle and Late Stage Dementia
Figure 2.

Clinical Pathway for Swallowing in Persons with Middle and Late Stage Dementia

×
Table 1. Analysis of Assessment Tools
Analysis of Assessment Tools×
Dysphagia – Dementia Component Area Addressed
Quality of Life Hydration and Nutrition Oral and Pharyngeal Swallow Skills Cognition Environmental
Dementia Mealtime Assessment Tool (DMAT)
Mann Assessment of Swallowing Ability (MASA)
Swallowing Ability and Function Evaluation (SAFE)
Successful EATing
Primarily oral stage
Functional Oral Intake Scale (FOIS)
Eating Assessment Tool (EAT-10)
Via self assessment
Edinburgh Feeding Evaluation in Dementia Questionnaire (EdFED-Q)
Primarily oral stage
Environmental and Communication Assessment Toolkit (ECAT
Quality of Life Measures: SWAL-QOL selected sections
Via self assessment
Table 1. Analysis of Assessment Tools
Analysis of Assessment Tools×
Dysphagia – Dementia Component Area Addressed
Quality of Life Hydration and Nutrition Oral and Pharyngeal Swallow Skills Cognition Environmental
Dementia Mealtime Assessment Tool (DMAT)
Mann Assessment of Swallowing Ability (MASA)
Swallowing Ability and Function Evaluation (SAFE)
Successful EATing
Primarily oral stage
Functional Oral Intake Scale (FOIS)
Eating Assessment Tool (EAT-10)
Via self assessment
Edinburgh Feeding Evaluation in Dementia Questionnaire (EdFED-Q)
Primarily oral stage
Environmental and Communication Assessment Toolkit (ECAT
Quality of Life Measures: SWAL-QOL selected sections
Via self assessment
×
Table 2. The Progressive Impact of Dementia on Swallowing
The Progressive Impact of Dementia on Swallowing×
Early Stage Dementia Middle Stage Dementia Advanced / Late / End Stage Dementia
Mild cognitive impairment; Moderate cognitive impairment Severe Cognitive Impairment
Awareness of cognitive deficits
Taste and smell dysfunction begins Taste and smell compromised Taste and smell compromised
Wayfinding mildly impaired Wandering and motor restlessness – additional calories required if ambulatory Ambulation is possible with assist;
Bed-bound at end stage
Attention - mildly impaired;intermittently distracted throughout meals; may forget meals consumed Attention – moderately impaired; periodically or often distracted throughout meals Attention – moderate-severely impaired; often distracted throughout meals
Self-feeding ability is preserved Self-feeding ability is preserved; lower middle stage may show difficulty with utensils Self-feeding ability is compromised; maximal to total assist for feeding
Independent with oral care Oral care requires assistance Dependent for oral care
Medications and polypharmacy considerations impacting dual diagnosis Medications and polypharmacy considerations impacting dual diagnosis Medications and polypharmacy considerations impacting dual diagnosis
Decreased nutrition and hydration due to Mild Cognitive Impairment (MCI) and depression Decreased nutrition and hydration due to attention deficits, cognitive-behavioral symptoms, and the onset of cognitive based dysphagia Decreased nutrition and hydration due to oral apraxia, oral acceptance and oral preparatory deficits
Adequate saliva production Decreased saliva production – Xerostomia risk Decreased saliva production – Xerostomia risk
No texture aversion Possible texture aversion Possible texture aversion
Visual Scanning of Environment Visual Scanning of Environment Visual Scanning of Environment
– 2′ to 4′ ranging from objects in plain sight to increased awareness of people/objects to the right and left - tunnel vision with 14-24″ in front -world continues to shrink, optimal task presentation now 7-14″ from face with 2′ diameter; stimulus must be striking and valued
Pharyngeal phase often WFL for persons with dementia in the absence of additional co-morbidities Potential pharyngeal phase involvement Pharyngeal phase deficits likely with high aspiration risk
Positioning not impacted Positioning challenges may be present Positioning challenges due to possible neck, extremity contractures
Table 2. The Progressive Impact of Dementia on Swallowing
The Progressive Impact of Dementia on Swallowing×
Early Stage Dementia Middle Stage Dementia Advanced / Late / End Stage Dementia
Mild cognitive impairment; Moderate cognitive impairment Severe Cognitive Impairment
Awareness of cognitive deficits
Taste and smell dysfunction begins Taste and smell compromised Taste and smell compromised
Wayfinding mildly impaired Wandering and motor restlessness – additional calories required if ambulatory Ambulation is possible with assist;
Bed-bound at end stage
Attention - mildly impaired;intermittently distracted throughout meals; may forget meals consumed Attention – moderately impaired; periodically or often distracted throughout meals Attention – moderate-severely impaired; often distracted throughout meals
Self-feeding ability is preserved Self-feeding ability is preserved; lower middle stage may show difficulty with utensils Self-feeding ability is compromised; maximal to total assist for feeding
Independent with oral care Oral care requires assistance Dependent for oral care
Medications and polypharmacy considerations impacting dual diagnosis Medications and polypharmacy considerations impacting dual diagnosis Medications and polypharmacy considerations impacting dual diagnosis
Decreased nutrition and hydration due to Mild Cognitive Impairment (MCI) and depression Decreased nutrition and hydration due to attention deficits, cognitive-behavioral symptoms, and the onset of cognitive based dysphagia Decreased nutrition and hydration due to oral apraxia, oral acceptance and oral preparatory deficits
Adequate saliva production Decreased saliva production – Xerostomia risk Decreased saliva production – Xerostomia risk
No texture aversion Possible texture aversion Possible texture aversion
Visual Scanning of Environment Visual Scanning of Environment Visual Scanning of Environment
– 2′ to 4′ ranging from objects in plain sight to increased awareness of people/objects to the right and left - tunnel vision with 14-24″ in front -world continues to shrink, optimal task presentation now 7-14″ from face with 2′ diameter; stimulus must be striking and valued
Pharyngeal phase often WFL for persons with dementia in the absence of additional co-morbidities Potential pharyngeal phase involvement Pharyngeal phase deficits likely with high aspiration risk
Positioning not impacted Positioning challenges may be present Positioning challenges due to possible neck, extremity contractures
×
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