Helen is approaching year four since her devastating dementia diagnosis.  She is now living in a long-term care facility as her family made the tough decision that they could no longer provide the level of care she required at home.  It is 11:00am and Helen joins the other residents in the dining room for lunch.  The staff places her meal tray in front of her.  Helen can visualize the shape of the food on her plate, but it just does not quite look the same as it used to. She is overcome with distractions in the dining room as the residents around her are talking loudly, some even yelling out all whilst the television is blaring.  Staff members are coming to and from her table, one now standing over Helen attempting to give her a bite.  Startled, Helen turns away.  After about ten minutes, Helen decides she is now ready to eat.  Another problem is, she cannot seem to locate the fork on her tray under the napkin, the numerous straws and the salt and pepper packets.  The colorful floral place mat does help, either.  Helen gives up on her meal all together.  She decides it would be best to just not eat lunch today, as she is not really that hungry after all and the environment is just too overwhelming.  “I will eat a snack later,” she think to herself… but she never does.   

This is just one example of the unfortunate reality for many who suffer from dementia.  Eating and drinking brings pleasure to most; however, dementia can bring about significant changes in one’s communication, cognition, sensation, appetite and ability to eat and drink.  Dementia currently affects 55 million individuals worldwide and is projected to increase by 10 million annually (World Health Organization, 2021). The rate of growth of this dreadful illness is staggering and healthcare providers struggle to maintain mealtime pleasure and nutrition of those individuals who suffer from dementia (Chang & Roberts, 2008).  50% of individuals in skilled nursing facilities have dementia (Alzheimer’s Association, 2021) and 45-57% of those with dementia have dysphagia (Easterling & Robbins, 2008).  

It is not uncommon for these individuals with dementia to refuse to eat or drink and caregivers often interpret resistance as an adverse behavior, unwillingness or refusal. Psychologic anorexia can be common in the older adult especially at the end stages of a debilitating disease such as dementia (Morley & Thomas, 1999). However, the quality of exchange between this individual and their caregiver can have positive influenced on the amount of food consumed (Amella, 2002).  Nearly half of those with dementia require assistance at meals which can result in diminished safety and nutrition if caregivers are not specifically trained on the proper approaches to implement (Roddy, et al., 1987).  It is imperative that caregivers adapt the care approach and environment to fit the needs of the dementia population who will count on the professionals to help maintain nutrition/hydration and quality of life as their disease progresses.  

When dysphagia meets dementia, speech-language pathologists (SLP) play a vital role on the interdisciplinary team and should be a corner stone in care until end of life in this population.  Clinicians must understand the appropriate assessment tools and treatment methods, and train caregivers throughout the disease progression.  One barrier that clinicians face is there are no standardized guidelines for duel diagnosis of dysphagia and dementia and it is a challenge to determine the appropriate protocol for assessment and treatment (Tristani, 2016).  This article will discuss numerous assessment and treatment approaches which clinicians may add to their repertoire to facilitate the highest level of patient care in those with dementia.

Assessment:

A thorough assessment by the SLP will set the stage for development of the plan of care and ensure each patient’s individual needs are met at all stages of dementia. Below are various assessment options that should be considered when evaluating one with dementia. 

Bedside swallow evaluation:

  • Oral motor examination/cranial nerve assessment
  • Patient and family interview inclusive of the patients preferences, eating routine, appetite, cognitive functioning and any changes in sensation including taste and smell.
  • Chart review inclusive of (but not limited to) medical history, weight changes, advanced directives and medications. 
  • Oral Health Assessment Tool (OHAT) – 8 item validated tool for non-dental professionals to identify oral care needs that require referrals (Chalmers, et al., 2005).
  • The Dementia Mealtime Assessment Tool (TheDEMAT) – assessment/observation for mealtime to help to identify feeding behaviors and barriers to improve nutritional intake and eating ability and aid in development of a person-centered care approach (TheDEMAT, 2020).
  • Edinburgh Feeding Evaluation in Dementia Questionnaire (EdFED-Q) – 11 item instrument for clinicians to assess eating and feeding problems with late-stage dementia (Stockdell & Amella, 2008).
  • Mann Assessment of Swallowing Ability (MASA) – 24 item clinical bedside assessment of oropharyngeal dysphagia to provide clinicians a quick way to measure the disorder, determine whether a patient needs more comprehensive testing and a way to monitor swallowing skills overtime (Mann, 2002).

Cognitive testing/staging:

  • Global Deterioration Scale (GDS) – 7 stage scale to rate cognitive severity and provide caregivers with expectation at each stage as the disease progresses (Reisburg et al., 1982).
  • Brief Cognitive Rating Scale (BCRS) – Assessment used to measure functional and cognitive ability in those with normal aging and progressive dementia, correlating with the GDS (Reisburg & Ferris, 1988).
  • Functional Assessment Staging (FAST) – 7 stage assessment tool to measure the level of functional impairment in dementia (Reisburg, 1988).
  • Allen’s Cognitive Level (ACL) – Assessment to evaluate an individual’s cognitive functioning based on task-based activities (Allen, 1991; Kang & Tadi, 2021).

Instrumental swallow assessment as indicated.

Referrals as needed such as neurology, GI, dietary, ENT, palliative, hospice, PT, OT, etc.

Potential Treatment Approaches: 

Following a thorough evaluation, the clinician must determine what the basis of treatment will be.   Are there possible reversible causes of dysphagia such as oral health concerns (American Geriatrics Society Ethics, 2014)?  Will treatment be facilitative, rehabilitative or compensatory in nature?  Below are various approaches to treatment that may be indicated across various stages as dementia progresses. 

Determine least restrictive diet:

As dementia progresses, patients may be appropriate for modifications in their diet; however, clinicians must consider adverse results of restricted diets.  According to Wright, et al., “Patients on texture-modified diets have a lower intake of energy protein than patients consuming a normal hospital diet and it is likely that other nutrients will be inadequate too. All patients on texture modified diets should be seen by the dietician and assessed for nutritional support” (2005).  It is crucial those on modified diets be reassessed on a regular basis. 

Establish an oral care regimen:

As John Ashford said, “Oral care is not care. Oral care should be considered an oral infection control program” (2017).  Oral care should be completed regularly to decrease risk of oral and pulmonary infection.  Consider completing prior to meals to increase oral stimulation and circulation and/or after meals to remove oral residue.  As dementia progresses and when oral intake is limited, oral care can aid in improved comfort and quality of life. 

Caregiver Modifications to Promote Improved Mealtime: 

According to Amella (2002), “Mealtime is a dance between partners, one partner’s actions influence the others” (p. 121).  In late-stage dementia, the amount of food consumed is influenced by the quality of the exchange between nursing home residents and their caregivers (Amella, 2002).  SLPs play an imperative role in training caregivers on a modified approach when assisting individuals with dementia at mealtime.  Below are various strategies which caregivers can implement to enhance the quality of mealtime for those with dementia. 

  • Sit at same height and within view of the patient.
  • Attend to the resident by addressing them, identify meaningful patterns in behaviors, share the experience with the individual and validate the social importance of meals (Schnell & Kayser-Jones, 1999).
  • Implement communication techniques – Use a reduced rate of speech for improved processing with concrete language and simple instructions.  5-9 words in length are optimal to assist in improved short-term memory and processing (Jootun & Mcghee, 2011). 
  • Avoid negative comments about the food.
  • Avoid elder speak.
  • Provide cues as indicated: 
    • Verbal- Notify patient when you are giving a bite or drink and what it is (Heape, n.d.).
    • Visual- imitation/mirroring (Hellen, 1998).
    • Tactile- careful hand feeding, pacing, normal bite sizes, hand over hand (Hellen, 1998) or the Hand-under-Hand® (HuH) technique which is a guided assist in the palm of the hand which decreases the impulse to pull away that hand over hand may elicit.  HuH encourages self-feeding (or other action pattern) by triggering muscle memory (Snow & Porter, 2019). 

Environmental Modifications to Promote Improved Mealtime:

According to Stockdell & Amella (2008), “How we eat, with whom we eat, and where we eat are meaningful to all of us, especially older adults living in nursing homes” (p. 48).  Below are various environmental modifications that clinicians may implement and train caregivers on. 

  • Optimal mealtime setting: 
    • Out of bed for meals – This improves positioning and alertness, decreases the risk of aspiration during and after meals and promotes increased socialization if the patient can attend meals in the dining room.
    • Adequate lighting – “Older individuals require three times the amount of light as younger individuals” (Brush & Calkins, 2008). Ensure optimal lighting to facilitate improved ability to see during meals. Also ensure glasses are on if needed. 
    • Place setting – Encourage a clutter free area, avoid patterns, implement color contrast from food to plate and plate to table to improve ability to distinguish the item(s), limit number of utensils and food/drink items provided for improved attention to task (Alzheimer’s Association, 2021). 
    • Seating arrangements – Facilitate familiar sounds, smells and sights and avoid sitting residents together who dislike one another (Heape, n.d.).  Place varying levels of dementia together and allow them to “help” one another.  Sandman, et al. revealed a correlation between nursing staff being present at meals with increased dependence and when no nursing present, residents were more apt to be “helpers” to one another (1988). Consider implementing feeding assistance groups which are associated with improved fluid and food intake (Simmons & Schnelle, 2006).
    • Noise/sounds – Allow for familiar sounds to be present at meals and turn down/off the television if distracting (Malone, 2019a).  Play soft, age/culturally appropriate music if desired as music can reduce agitation during mealtime (Denny, 1997).  Music may also have positive effects on feeding and intake amongst those with dementia (Ragneskog, et al., 1996). 
    • Avoid interruptions – Schedule medications, blood draws, finger sticks, etc. prior to meals or after if/when possible (Beck et al., 2017).

Cognitive interventions for mealtime: 

Clinicians may opt to capitalize on a patient’s strengths that are maintained despite progression of the illness.  These might include implementing the following approaches. 

  • Spaced Retrieval Training (SRT) – Capitalizes on non-declarative, procedural memory and stimulus based training which are less impacted by dementia than the declarative or working memory (Hopper, et al., 2005). 
    • Individuals with dementia can learn new information such as swallowing strategies and recommendations.
    • Clinicians must ensure meaningful/relatable information with regular, repetitive practice to provide increased exposure to the information and improve retention (Malone, 2019b).
  • Visual memory aids –
    • For those with dementia, the ability to read is often preserved later into the disease progression (Benigas & Bourgeois, 2011).
    • Examples of potential memory aids: Safe swallowing strategies or what foods are/are not on diet.
    • Preferred presentation of visual aids for the aging/dementia populations (Brush, 2018):
      • Provide large print with simple words and high contrast.
      • Preferred typeface is sans serif typeface (Ariel, Calibri, Tahoma, and Helvetica).
      • Colored background with white writing.
      • Preferred colors are blue, red and green.
      • Avoid all capital letters.
      • Incorporate signs in designated areas of building to be the same color (e.g.: all dining room signs the same, activity room signs the same, etc.).
    • Laminate and/or use picture frames.
  • Later stages may require increased cues beyond visual aids (Malone, 2019c).
  • Allow “payment” or receipt for a meal (e.g.: meal tickets) (Heape, n.d.).

Alertness during mealtime: If the patient’s eyes are closed, can they still follow one step commands and/or answering questions? If so, alertness may be sufficient for safe and effective intake.  When alert, do provide the foods/liquids to maintain nutrition if deemed safe (Tristani, 2016).

Adaptive equipment: Collaborate with occupational therapy to promote increased independence, nutrition/hydration and safety with meals. Below are examples of adaptive equipment that may be used to encourage improved success with meals.

  • Serve food in a bowl instead of plate, plates with rims or edges, large handled utensil, spoon instead of fork to scoop and finger foods (Alzheimer’s Association, 2021)
  • Easy to grasp cups/glasses, cups with suction bottoms and cups with lids (Heape, n.d.).

Alternate/Supplemental Nutrition:

Clinicians may opt to collaborate or refer to dietary to improve patient’s nutrition outside of meals.  These may include but are not limited to the following. 

  • Hydration carts, happy hour, snacks available throughout the day, handheld snacks for wanderers.
  • Appetite stimulants – These are not as effective with very low BMI or with end stages of disease (Parker & Mendenhall, 2021).
  • Nutrition supplements (Mendenhall & Parker, 2021):
    • Focus on increased amount of food consumed such as more meals or high calorie/protein snacks throughout the day.
    • These are most commonly used with those who continue to lose weight or have anorexia.
    • Supplements can take up to 2-3 weeks to show results.
    • Associated with not only improved nutrition and hydration but also decreased urinary tract infection, alertness and oral health.
    • Supplements can improve weight but reduce appetite at meals, are a cost expense and may result in GI complications. Examples include: Super Doughnuts, Magic cups, Liquid supplement such as Boost and Ensure (Heape, n.d.)

End of Life Considerations and the SLPs Role: 

The SLP can play an important role in palliative/hospice care when support, caregiver training and interdisciplinary team collaboration becomes the primary focus. Clinicians should become familiar with their roles so their personal discomfort does not impact the patient’s care.  

Families are often concerned their loved one will suffer or “starve” if they cannot eat as they near end of life.  In all actuality, withdrawing nutrition at end of life can actually improve comfort. Here are several important facts clinicians should be knowledgeable on in order to educate caregivers and the interdisciplinary team and guide decision making during this difficult time.

  • When artificial nutrition and hydration is withheld in those with severe dementia, discomfort was not associated (Pasman, 2005). 
  • Providing feeding at end of life can cause organs to overwork while trying to shut down (Mendenhall & Parker, 2021).
  • When the stomach is empty for a period of time, the body will reduce its hunger/thirst signal communication to the hypothalamus (Mendenhall & Parker, 2021).
  • Ketonemia, a buildup of body’s ketones, is associated with euphoria and internal opioid production, so may actually improve patient comfort and decrease pain (Dodd, 2020).
  • Water deprivation is associated with the bodies naturally development of opiates and can in turn reduce pain (Dodd, 2020).  As the body becomes dehydrated, there will be reduced urine output, so the patient will have a reduced need for catheter which can be uncomfortable (Mendenhall & Parker, 2021).
  • Fluid overload and edema may be associated with IV fluids at end of life resulting in patient discomfort (Mendenhall & Parker, 2021).
  • According to the American Geriatrics Society Ethics, “feeding tubes are not recommended in older adults with advanced dementia” and are “associated with agitation, greater use of physical and chemical restraints, greater healthcare use due to tube-related complications, and pressure ulcers (2014).

In conclusion, the SLP hold a valuable role in the care of individuals with dementia in order to promote the highest level of independence, safety, nutrition/hydration and quality of life during all stages of the illness.  When knowledgeable on through assessment and treatment approaches, clinicians are a large asset to educate caregivers and work with the interdisciplinary team members to ensure proper care until the end stages of life in those with dementia. 

References

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