Understand Normal vs. Disorder. Normal Aging- Motor Function. Normal Aging- Sensory Function. Other Normal Changes in Aging 1/27/18

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1 Understand Normal vs. Disorder Dysphagia in Patients with Dementia- Strategies for Success Amber Heape, ClinScD, CCC-SLP, CDP Presbyphagia Declines of swallow associated with normal aging (Wirth et.al, 2016) Normal changes are not considered a disorder Secondary factors (disease or other health factor) increase risk of significant dysphagia Dysphagia Disordered swallowing May lead to Aspiration Modified diets Weight loss Inability to maintain nutrition/ hydration Malnourished patients are 3 times more likely to have infection and twice as likely to develop pressure ulcers (Avelino-Silva and Jaluul, 2017) Placement of alternate nutrition/hydration Normal Aging- Motor Function Decreased strength of lips, tongue, mandible, pharynx, and larynx Xerostomia leading to inability to form a cohesive bolus Some delay in onset of pharyngeal swallow, with penetration into the valleculae Decreased lingual and pharyngeal strength (may require multiple swallows to clear vallecular space) UES opening may not fully relax (causing food, pills, etc. to get stuck ) Esophageal peristaltic wave weakened (presbyesophagus) Normal Aging- Sensory Function Decrease in taste and smell Reduction of saliva secretion Decreased sensitivity and thinning of vocal folds (may lead to inability to fully protect airway during swallow) Other Normal Changes in Aging Changes in dentition Change in nutritional requirements Vitamin D deficiency (less outdoor time) Calcium (bone health) Protein (muscle mass) Nutritional supplements to maintain weight Lower activity level= less caloric intake needs Conditions that May Lead to Dysphagia: Neurological Disorders Static or Acute: CVA, SLN Palsy Progressive: ALS MS, PSP, Myasthenia Gravis, Alzheimer s Cancer Tumor, radiation, chemotherapy Pharyngeal disorders Zenker s Diverticulum, Cervical Osteophytes Gastroesophageal disorders Hiatal hernia, esophageal stricture, Barrett s esophagus Chronic Conditions: Diabetes, COPD, Arthritis, ESRD, Hypothyroidism 1

2 Additional Factors- Drug Induced Dysphagia Esophageal Injury Dysphagia due to Side Effects Xerostomia Decreased taste Decreased appetite Constipation Metabolic issues (absorption) Dysphagia Due to the Drug Therapy Itself Xerostomia Damage to the mucosa (radiation, chemo drugs) Immunosuppressants leading to viral or fungal infections High dose corticosteriods may lead to muscle wasting Narcotic pain medications or muscle relaxers cause decreased voluntary muscle control and awareness due to depressed CNS Antipsychotics or Neuroleptics can cause movement disorders Social/Emotional Factors in Dysphagia Decreased motivation or enjoyment for eating due to social isolation Activity limitations, increased effort and time to eat, embarrassment Financial problems that impair ability to maintain nutrition Physical limitations that prevent preparation of food Depression leading to fatigue, globus sensation Anxiety about chewing/swallowing issues Dementia: Stages of Decline Early Dementia (around GDS 4/ ACL 5) Moderate Dementia (GDS 5/ ACL 4) Moderate/Severe Dementia (GDS 6/ ACL 3) Late (End-Stage or Severe) Dementia (GDS 7/ ACL 0-2) Consider the theory of retrogenesis! Dysphagia in Early Dementia Visual field= inches (Tristani, 2011) Awareness of deficits Depression may lead to decreased (or increased) intake for nutrition/hydration Eating still a highly social activity Patient can clearly express preferences Early dysfunction of taste and smell Mild attention impairment Dysphagia in Moderate Dementia Visual Field= 7-14 inches with perceptual deficits (Tristani, 2011) Wandering or restlessness Requires assistance for oral care Decreased attention span leading to decreased nutrition/hydration Leaves table during meal May require verbal cues to redirect or complete meal Texture aversion Increased stasis post-swallow ( saving for later ) Dysphagia in Moderate/Severe Dementia May use fingers instead of utensils or use utensils incorrectly May easily become overwhelmed by too much food or too many containers present Decreased judgment (excess bite size or attempting to eat nonedibles) Pours liquids onto foods Takes food from others Wants to eat junk food/ dessert only Over-chewing or over manipulation, pocketing food Tongue pumping 2

3 Dysphagia in Severe Dementia Stage lasts from 6 months to 2 years About 1/3 of patients diagnosed with dementia will live to progress into the advanced/end stage (Gillick, 2001) Loss of interest in eating, dysphagia are prevalent (Goldberg and Altman, 2014) Visual field with limited perceptual abilities and only up to about 7 inches from midline (Tristani, 2011) Oral apraxia and oral acceptance deficits Loss of speech is common, so patient cannot express needs verbally Dysphagia in Severe Dementia Patient is dependent for oral care, increasing risk of aspiration pneumonia Often requires positioning assistance Textural issues Most patients lose self-feeding ability, requiring assistance With cognitive deficits, this may become a scary experience Oral acceptance issues Medical Options Supplemental Nutrition/ Hydration IV Oral NG/PEG Temporary or Permanent? What expectations are you trying to achieve? Risk vs. Benefit Tube Feeding in Advanced Dementia- Review of the Evidence The proportion of patients per facility that receive feeding tubes has decreased 50% in the last 15 years partly due to increased evidence (Mitchell et.al, 2016) There is no current evidence to demonstrate that long-term survival rates for patients with dementia who undergo PEG placement are any higher than those who refuse the PEG; nor is quality of life higher (Sampson et.al, 2009) Some evidence suggests that median survival rate is worse with the PEG (Goldberg and Altman, 2014) or that they are equal (Murphy and Lipman, 2003) Long-term feeding tubes do not lead to increased weight (Albugami et.al, 2015) A 10 year retrospective study in NYC determined that out of patients receiving peg (n=284) (Gumaste et.al, 2014) 16% were discharged within 3 days, but 84% required increased hospital stay (late discharge) 9% died before hospital discharge Risks of Tube Feeding in Advanced Dementia Approximately 1/3 of residents in SNFs with advanced dementia have feeding tubes (Sampson, Candy, & Jones, 2009) Feeding tube placement is associated with increased healthcare cost, and increased days of inpatient hospital or intensive care stays (Hwant, et.al, 2014) Complications with the PEG in approximately 2/3 of patients (Malmgren et.al, 2011) 39% with aspiration complications post-peg Hospitalists specializing in dementia are less likely to recommend PEG placements than GPs, subspecialists, or multi-physician groups (Sullivan, 2015) Physicians are more likely to place PEG tubes in patients with advanced dementia when families request than when making an independent decision (Gieniusz et.al, 2017) Why do Patients/Families Choose Tube Feeding? Moral, ethical, religious reasons Fear of starving the loved one Poor practitioner education Listening to the doctor It s presented as a choice (for or against), without other options There are also cultural, familial, and geographical influences (Rhodes, 2014; Douglas, 2017) 3

4 Instead of Tube Feeding Oral supplements Full liquid diet Careful hand feeding Hand over hand Not causing excess disability Pacing with patient cues Normal bite sizes (American Geriatrics Society Ethics Committee, 2014) Advanced Directives POA- Person who makes decisions for the patient in the event of incapacitation May be financial or healthcare POA Living Will - legal document that outlines patient s wishes in medical scenarios HIPAA Authorization RP information will be in chart Do Not Resuscitate Order (DNR) Usually indicated on outside and inside of chart with a special indicator sticker Decision-Making Capacity The decision must be made by the patient if deemed competent to make own informed choices, signified by (Sharp, 2005) Ability to communicate choices Ability to understand relevant information to that choice Ability to understand the risks vs. benefits of recommendations vs. chosen diet If the patient does not have the capacity to make informed choices, the patient s responsible party or POA must do so. Best practice is education of the patient and their RP! Keep in mind there may be an Advanced Directive specifying desires for alternate nutrition/hydration 4 Major Ethical Questions 1. What is the true purpose of intervention? (medical indication) 2. What are the patient s wishes or preferences? (may be written or verbal, depending on severity) 3. How do these decisions affect the patient s quality of life? 4. Are there any legal, financial, religious, scientific, or emotional constraints that may hinder this intervention? Principles of Ethics to Consider Respect the autonomy of the patient and/or family Always consider the patient s best interest (beneficence) Always consider the harm possible to the patient and attempt to minimize (maleficence) Show patients fair, equitable, and appropriate approach to treatment (justice) (Horner et.al, 2016) Quality of Life Compromises Does not mean the patient is safest on chosen diet May include: Diet consistency changes for patient quality of life Free access to ice chips or water under parameters Pleasure food 4

5 Evaluation- Key Questions Is this problem acute, acute on chronic, or chronic? Infection, medication, etc. may cause acute issues What was the patient s prior level of functioning over the past weeks, months? Are there any patterns to the dysphagia? Is there a medication that may be affecting the swallow? What type of caregiver support exists in the patient s normal environment? Does the patient have an advanced directive/ living will? Is this patient on palliative care? Evaluation Case history, review of medical co-morbidities Patient interview, review of symptoms May use QOL instrument such as SWAL-QOL Clinical Assessment of Dysphagia (BED) May include standardized instruments like SAFE or MASA Tools such as pulse oximetry, 3 oz water screen, cervical auscultation Instrumental Assessment of Dysphagia Barium Swallow (Esophagram) Videofluoroscopy (MBSS) Fiberoptic Endoscopic Evaluation of Swallowing (FEES) Manometry Key Considerations for Treatment If this is an acute dysphagia, was there a specific incident that can be remedied without diet changes? Even if the patient has a PEG, can you provide oral, non-nutritive stimulation for potential rehabilitation of the swallow? Early Conversation is Key! Don t wait until the end stages to have conversation with patients/ families In early stages, patient can provide input on wishes Families need to be educated that no PEG does not mean no food, no care, or give up Educate on quality of life feeding and EBP (American Geriatrics Society, 2014; Horner et.al, 2016) Treatment or Intervention Medical Interventions GERD meds, surgery, feeding tube placement Prevention Maintenance of good oral hygeine Routine exercises to maintain strength Intervention by the SLP (Wirth et.al, 2016) Rehabilitative Strategies (fix the physical problem) Compensatory Strategies (compensate for the physical problem) Free Water Protocol Cognitive Interventions, such as Spaced Retrieval (Lin et.al, 2010; Benigas and Bourgeois, 2016) Precautions/ Caregiver trained intervention Positioning Feeding techniques Specialized dining equipment Supplements/ Alternates? Magic Cup Super Doughnuts Liquid Supplements (Boost, Ensure, etc.) Positive short-term effects, but long-term effects unclear (Abdelhamid et.al, 2016) 5

6 Management of Dysphagia Consider the patient s alertness If the patient is alert, give extra portions! Be flexible with feeding time, speed, and environment Use written cues if beneficial to assist patient in recalling compensatory strategies When teaching strategies, use 1-step directions, visual cues, and memory/recall strategies if appropriate Use physical cues for chin tuck, etc. A combination of interventions may be more efficacious than a single change (Vucea, Keller, & Ducak, 2014) Modifications to environment may be beneficial (Keller et.al, 2014) Modifications to Environment Lighting Avoid low lit environment. Use well lit area Reduce glare Place Setting Placemat Place Cards Contrasting color of placemat/plate Single color plates (no patterns) Square tables to designate personal space (round tables are difficult) Keep the eating area clutter-free Modifications to Environment Familiar sounds, smells, and sights help create a welcoming environment Do not sit resident with others who he/she may dislike Encourage residents who are highly social to sit with others- Montessori approach (Bunn et.al, 2016) Allow payment or receipts, meal tickets Refrain from interrupting (meds, blood draws, finger sticks) during mealtime (Beck et.al, 2017) Modifications to Food Presentation Smaller portions Divided plates Cups/glasses that are easy to grasp Colors alternated Molded foods for puree Glassware, tableware normal Limit utensils (only spoon or fork) Have food precut to maintain dignity and allow appropriate bite size Limit garnishes Modifications to Food Presentation Alternate savory/sweet Add sweetener to food (sweet is the last taste to go) Alternate temperatures Provide high flavor food or drink to stimulate stronger response Provide ice cold drink at beginning of meal to stimulate Other modifications OT may provide adaptive equipment suggestions Finger Foods- encourage self-feeding Use spoons for patients having difficulty scooping food 6 small meals per day instead of 3 larger ones Nutritious, high calorie, high protein snacks Allow the patient to wander/walk and eat if safe Have hydration readily available throughout the day Establish routine (my place) 6

7 Other modifications Adding calories to food if patient is losing weight (cream, butter) Allow favorite foods (recognizing that tastes may change) Don t mix foods, but recognize that patients may do this themselves at times If the patient is up during the night, allow the patient to eat Modifications in End Stages Full liquid diet may be appropriate if patient refuses food textures, including puree Anticipate the needs of the nonverbal patient Identify non-verbal indicators of discomfort, pain, dislike Understand that patients may refuse food/ drink in order to hasten death (Ganzini et.al, 2003) What About Patients Who Are Overeating and Gaining Weight? Have small, healthy snacks available for the patient Serve smaller portions at mealtime, but offer additional if the patient is still hungry Keep the patient occupied with activity, so that he is not bored or lonely What about the patient holding food in his/her mouth? Offer an empty spoon (or one with minimal food) Offer a sip of liquid Verbally ask the patient to swallow, then stroke the larynx upward Ask a question of the verbal patient Use genuine touch to gain attention and encourage swallowing What about the patient with paranoia? Routine is crucial Don t mix medication and food Serve simple, easily recognizable foods that are familiar to the patient Explain what each food is before the patient eats it Prepare food in front of or with the assistance of the patient Eat with the patient, even if only a few bites Feeding the combative patient! If the patient is on PT caseload, have that therapy conclude right before mealtime Use suction cups to affix plates to the table Use cups with lids Sit on the non-dominant side of the patient Provide calm environment, and do not respond loudly to combative behavior Provide one food at a time Allow finger foods When all else fails, re-approach at a later time Patient-centered decision-making (each patient/ situation is different) (Konno et.al, 2014) 7

8 Strategies for Education of CNAs/ Caregivers Understand that the interaction between caregiver and patient has a major effect on patient s perception of the mealtime experience (Watson et.al, 2017) Don t interpret inattention to lack of desire to eat Biting the spoon may be reflexive, not a sign of refusal to eat Turning the head away may mean the patient needs more time between swallows, not that the patient is finished with the meal Sit down to feed patient. Don t feed from above Give patient eye contact and speak to them, not over them. Provide normal bite sizes. Don t rush! Feeding someone is a loving, nurturing act, not a job When Patients Refuse Recommendations Is the patient still competent to make that decision? Is the family in agreement with it? Care plan Waiver/ AMA document? If the Family Places a PEG, Should I Automatically Discharge? ASHA COE Principle 1: Therapists shall hold paramount the welfare of the persons they serve professionally. This does not include ONLY the physical welfare/ risk! Quality of life, ability to make choices are also part of a patient s overall welfare Discharging a patient because they choose a specific diet/liquid consistency or receive a PEG (whatever your recommendation) could fall under questionable ethics, if you fail to address safety within their chosen diet/liquid consistency What About Aspiration? A study by Susan Langmore and colleagues (1998) identified that dysphagia (aspiration) alone is not a major predictor of aspiration pneumonia. While aspiration does cause risk for aspiration pneumonia, there were certain factors that actually increased the risk: Dependence for feeding and oral care Dentition (decaying teeth) PEG tube Number of medications Decreased mobility (bed bound) Smoking Multiple medical comorbidities This study also identified that aspiration of secretions (many NPO) was almost as likely to cause pneumonia as aspiration of liquids Aspiration of food was more likely to cause pneumonia than aspiration of liquids Only 38% of those who aspirated contracted pneumonia! (Langmore, 1998) Is Our Recommendation Always Right? Groher (1995) examined 212 participants on mechanically altered diets living in nursing homes A detailed multi-feature analysis examined whether the patient was on the least restrictive diet, or if there were other options. Results: 91% of patients were able to eat diets above what the were prescribed 4% were consuming diets that were above an appropriate level 5% were considered at the appropriate level Interactive Case Studies Case Study 1 Notes 8

9 Interactive Case Studies Case Study 2 Notes Interactive Case Studies Case Study 3 Notes Interactive Case Studies Case Study 4 Notes 9