Managing Dysphagia in Residents with Dementia
SKILLED INTERVENTION FOR A COMMON—AND TROUBLING—DISORDER
BY SUE CURFMAN, MA, CCC
Source of article: Nursing Homes/Long Term Care Management
Adapted with permission from an original article published at www.speechpathology.com.
Research and statistics clearly indicate that dehydration and malnutrition are prevalent and serious concerns with skilled nursing facility (SNF) residents. Studies indicate that 54% of all newly admitted SNF residents are malnourished; the prevalence of malnourished elderly in SNFs has been reported to range from 20 to 87%. In addition, 60% of all residents experience an initial weight loss following admission.
Many of the residents in these statistics had a dementia diagnosis, which places them at higher risk for weight loss and dehydration. In addition, current statistics estimate that 60 to 80% of all residents in long-term care have a dementia diagnosis. Thus, adequate nutrition and hydration in a resident with dementia is a central concern for all members of the family and healthcare team.
The effect of dementia on nutrition and hydration changes throughout the course of the degenerative disease process. In the early stage, the individual with dementia may forget to eat, may become depressed and not want to eat, or may become distracted and leave the table without eating. In the middle stage, the individual with dementia may be unable to sit long enough to eat, yet at this stage may require an additional 600 calories per day because of wandering and motor restlessness. In the late stage, the individual with dementia does not have intact oral motor skills for chewing and swallowing, thus becoming subject to malnourishment and “wasting away.”
This is one reason a facility can benefit from the involvement of a speech-language pathologist (SLP). The role of the SLP will change over time because of the progressive nature of the dementia disease process and its effect on swallowing function and nutrition. The SLP’s goal is the same as Medicare’s number one goal in these residents: “facilitating and maintaining safety for the resident during swallowing and p.o. intake” (Medicare Transmittal No. 597, Medicare Hospital Manual). It is imperative that the SLP, as well as the director of nursing and other key members of the caregiving team, have a solid understanding of dysphagia and appropriate treatment and management techniques specific to the disorder. Administrators and other nursing home professionals will also benefit from a general understanding of the complexities of caring for these residents.
The Family Guide to Alzheimer's Disease Video Series provides an indispensable resource offering encouragement and instruction to those affected by Alzheimer’s Disease.
The goal of assessment for an individual with dysphagia and dementia is to identify the nature of the dysphagia, identify the contributing factors, differentiate the physiologic impairment and/or cognitive dysfunction aspects, identify capacity for improved safety, and identify the potential benefit from skilled intervention. Specific components of the initial assessment include chart review, resident/caregiver/nursing interview, sensory function, head and neck positioning, oral motor skills, pattern of mastication, salivation, and laryngeal elevation. Each of the swallow assessment components are individually reviewed below.
The course of recovery or progressive decline found in the diseases and surgical procedures linked to dysphagia vary widely. Once the disease process contributing to the dysphagia is identified, the clinician should determine the resident’s course of anticipated recovery or decline. Fortunately, the effect of progressive dementia on swallow function can be fairly predictable. Chart review takes on an even more primary role when the resident’s recall or ability to provide information is limited because of memory impairment, dementia, or other language deficits. Therefore, the following information in the medical record should be sought:(1) diagnoses; (2) current weight; (3) recent weight changes; (4) current and historic therapeutic/altered diets; (5) current eating habits, including food types and amounts consumed at scheduled and unscheduled times; (6) self-feeding skills throughout the course of the meal; (7) eating and chewing difficulties; (8) signs/symptoms (from nursing notes) of congestion, coughing, choking with drinking or taking medications, fever, and lethargy; (9) x-ray results (e.g., chest and modified barium swallow); and (10) history of pneumonia
Two key questions for the resident are: (1) “What are your problems with eating, drinking, and swallowing?” and (2) “Why do you think you are having a problem with swallowing?” Besides valuable information about the resident’s perception of the illness, you can get a sense of the resident’s overall cognitive status and ability to attend to and follow directions and learn new information. This will influence the nature of the treatment program.
Many residents with dysphagia as a result of neurologic impairment will be unable to participate in the interview process because of expressive and/or receptive communication problems or cognitive dysfunction. If so, the necessary information can be obtained from a caregiver or family member who is familiar with the resident.
It is important to determine whether the resident’s sensory pathways are intact, intermittently intact, or absent. The following six anatomic sites are assessed to determine this, in this order:- tongue (anterior two-thirds); - tongue (posterior one-third); - hard palate; - soft palate; - posterior pharyngeal wall; and -laryngeal region.
Sample sensory deficits that may be discovered include decreased p.o. intake secondary to altered/absent perception of taste; diminished safety mechanism for sensing hot food, with potential/actual intraoral injuries; and/or profound sensory deficits in the later stages of the disease that eliminate any functional mastication pattern.
Head and neck positioning.
Assessment considers both habitual body position and habitual head position. Note whether the resident is able to complete independent positioning on instruction or is at least able to assist in positioning. Three common head/neck positions occur in the later stages of dementia: chronic head/neck flexion, variable head/neck flexion/extension caused by a lack of positioning management, and chronic head/neck hyper-extension. The only appropriate goal of intervention at this late stage is to improve the resident’s functional behaviors through the use of adaptive equipment or assistive devices; no rehab potential remains because of the bilateral brain destruction.
The Crescent Pillow Mate cervical pillow gently cradles the neck. Crescent shape provides support for cervical alignment without forward flexion.
Oral motor skills.
The clinician will: (1) visually inspect and assess ROM, strength, and coordination of individual oral structures, including lips, tongue (anterior, middle, and posterior), and soft palate; and (2) assess the functional movement patterns required for the oral stage of swallowing, including food bolus manipulation during chewing, cohesive food bolus formation, anterior-to-posterior transit of cohesive food bolus, and transfer or dropping of food bolus into pharynx.
Pattern of mastication.
The clinician will assess both the muscles associated with mastication and the pattern of mastication. The oral motor function will determine the pattern of mastication, which deteriorates in a predictable fashion with the progression of dementia. The progressive deterioration in the mastication patterns below reflects a transition from higher level reflex integration to lower level reflex integration during the course of dementia:(1) rotary chew pattern; (2) lateral chew/chomping pattern and jaw-jerk reflex; (3) suck-swallow pattern and (4) absent oral motor function for chewing.
Assessment of salivary function includes three components: (1) visual inspection of the oral mucosa to determine adequacy of salivary flow, (2) medication review, and (3) medical history review. Common drug classes that reduce salivation include anticholinergic, antidepressant, and anti-psychotic drugs. If salivary flow is adequate, the oral cavity will appear wet; if hypo-salivation is present, the oral cavity will become dry. Symptoms of dry mouth (xerostomia) include mouth pain; difficulty chewing; difficulty swallowing; weight loss; mouth infections; tooth decay; a dry, cracked tongue; bleeding gums; cracked corners of the mouth; badly fitting dentures; and dryness in the eyes, nose, skin, and throat. If complaints or visual inspection indicate a dry mouth, the resident should be assessed for other signs/symptoms of dehydration, including dry mucous membranes; loss of skin turgor; intense thirst; flushed skin; oliguria (decreased urine output in relation to fluid intake); dark, yellow urine; and/or possible elevated temperature.
Analyzing volitional swallows and laryngeal elevation.
Once initiated, the swallow should occur briskly. The clinician will also assess laryngeal elevation during dry and/or bolus swallows. The components of laryngeal elevation would include the speed of laryngeal elevation, the movement of the structures involved, and the integrity of their movement.
The information from the chart review, interview, clinical swallow assessment, and instrumental assessment is reviewed and analyzed to determine the presence of dysphagia, as well as level, severity, and primary etiology of contributing factors. The question then is whether the resident demonstrates dysphagia secondary to a physiologic deficit and/or a cognitive deficit. Many swallowing and eating impairments are secondary to the primary dementia diagnosis, which is the focus of the remainder of this article.
Dysphagia of Dementia.
The resident may demonstrate the following secondary conditions related to the primary dementia diagnosis:
- absent oral motor pattern for mastication; - poor sensory awareness/integration; - negative reaction to food textures and consistencies; - suck-swallow mastication pattern; - significant irreversible pharyngeal dysphagia; and - reduced p.o. intake secondary to behavioral issues possibly related to dementia
Dysphagia treatment can be divided into direct treatment and indirect treatment. In direct treatment, the clinician works directly with the resident, teaching him or her compensatory strategies. Examples of direct dysphagia treatment interventions include sensory stimulation, diet modification, muscle strengthening, ROM exercises, and caregiver training in feeding assistance.
With indirect treatment, the clinician sets up an individualized plan of care incorporating environmental modifications, adaptive equipment/assistive devices, safety strategies, etc., that are used by a designated caregiver. Examples of indirect dysphagia treatment interventions include addition of sweetener to food items (if only sweet taste receptors remain); use of alternative nutritional systems, such as enteral feeding; and/or oral care/sensory stimulation provided by nursing.
The Dysphagia Cup is a special design cup for people who have difficulty swallowing.
Treatment recommendations may include:
sensory stimulation and/or integration, such as increasing texture variation (dry crackers or crisp cookies), increasing mouth sensation, and facilitating mastication pattern; diet management (as prescribed), development of an individualized plan of care/functional maintenance program (FMP), and caregiver training for implementation. An FMP is a detailed program of strategies and instruction carried out by the caregiver that maximizes resident skills to maintain the highest level of functional independence; providing oral care from nursing before meals with a citric swab to increase salivation; offering the resident six small meals daily; offering the resident calorie-loaded finger foods throughout the day to increase p.o. intake of calories; involving the resident in a facility hydration program; and evaluating the resident by PT/OT for appropriate positioning to expedite safe, effective swallow function and meal completion.
Enteral Feeding and End-of-Life Decisions
More than one-third of severely cognitively impaired elderly residents in U.S. nursing homes have feeding tubes. However, studies by Murphy and Lipman, as well as Finucane et al, conclude that there are no documented changes in nutritional status, pressure sores, or other functional status following gastrostomy tube placement in these residents.1,2 Tube feeding is not proven to prevent “wasting away,” and there is no survival benefit in residents with dementia who receive enteral feeding. Issues related to enteral feeding to sustain life in the end stage of dementia should be discussed with the resident and family early in the disease process. It is optimal for the person to state his/her own preference regarding enteral feeding before losing the ability to communicate such complex ideas. If the resident cannot do this, it is important to provide caregivers with adequate information regarding available treatment options and the consequences related to nutritional intake.
Table Strategies for managing residents with dementia and dysphagia
FORGETFULNESS AND DISORIENTATION
Misinterprets or ignores the body signals of hunger and the need for food Offer liquids and water consistently throughout the day, as residents usually do not ask for a drink. Dehydration may trigger increased combativeness and urinary tract infections. Place beverage bars featuring different juice flavors in high-traffic areas.
Plays with food/forgets how to eat/does not recognize food as food Residents frequently do not transition from the before-meal activity to the meal itself, thus they play with food because no environmental cues trigger identification of the change. Offer environmental interventions to signal the change to eating, including items altering the appearance of the table, such as a tablecloth, flowers, baskets for napkins, and place mats.
Eats with fingers instead of utensils Increase the number of finger foods being offered. Serve hot cereal or soups in a mug, or cut fresh fruits and vegetables into bite-size pieces. Serve gravies and sauces in a side dish for dipping. Offer items such as breakfast bars, finger gelatin, and “edible containers" such as ice cream cones as options. Continue to try to encourage eating with utensils if the resident’s skill level can be advanced.
The Clothing Protector is easy to put on and take off with hook and loop closure. Measures 18 x 24 inches for chest to lap protection.
Does not use utensils correctly Limit the number of utensils. Often elderly residents with dementia eat with a knife because they pick it up with their dominant hand to cut their food (whether needed or not) and then forget to put it down to select a fork or spoon.
Is unable to make choices if too much food or too many containers are present at one time Serve one course at a time so that the necessity of making choices is limited and there are fewer distractions; when appropriate, allow menu selection and the choice between two or three main courses. If dining at a restaurant, offer the menu and give the cueing needed to help with choices. For example, “Would you prefer chicken or beef today?” If residents cannot make choices at all and you know their likes/dislikes, you might say, “This restaurant is noted for its excellent roast beef. Would you like some?”
If residents feel that there is too much food on their plate, use two plates, serving half a meal at a time.
Demonstrates an inability to understand what is expected of him/her at mealtime Establish the same routine at each meal. Reinforce with simple one-step directions using visual and gestural cueing. Placement of the fork/spoon in the resident’s preferred hand and hand-over-hand caregiver assistance may trigger the eating process.
LIMITED ATTENTION SPAN
Has an inability to attend to the task of eating, limiting the meal from being consumed entirely Use simple words. Touch and redirect the resident to the task of eating. Five or six meals per day may be needed for residents who are unable to eat much at any one time if they become agitated when caregivers attempt to refocus them.
Leaves the table during the meal The meal may be a combination of sitting and eating, followed by walking and eating finger foods from a bowl. Make sandwiches with anything that will hold together. Waist pouches may help a pacer to keep his/her hands free so he/she can hold finger foods.
JUDGMENT AND SAFETY
Eats food pieces that are too big to swallow safely Assess food pieces for size, thickness, and consistency and make necessary adjustments. Consider providing precut meats and other food items cut into bite-size pieces.
Eats non-edibles Avoid garnishes that are not easily chewed or eaten or that are decorative in nature.
Pours liquids onto foods If residents pour liquids over food, it may be necessary to provide them only when food is not present.
Takes another resident’s food Offer visual cueing for boundaries by using place mats to reduce interest in another’s meal. Square tables provide better definition of territory than round tables.
Has difficulty discriminating boundaries between items Focus on color contrast in terms of the food to the plate or cup, and the contrast of the plate to the place mat. Supporting visual interpretation can reduce the resident’s anxiety.
Communication: Understanding and being understood Develop a list of food preferences and dislikes.
Use multi-sensory cueing with frequent pointing. Lift the item away from the table or lift the food from the plate to regain attention.
Use verbal encouragement, such as, “This is a new recipe I want to cook for my daughter. Would you please try it and tell me what you think?”
When asking questions about food choices, use “either/or” questions rather than “yes/no” questions, which could lead to “nos” and not eating.
Weight gain/loss Doubling up on breakfast may help to maintain weight.
Offer snacks between meals and before bedtime.
Alternate hot and cold foods to help trigger a swallow.
Establish a policy so that honey and sugar may be used on food, if medically appropriate, as these entice residents to eat.
Sweet taste receptors remain intact through the end stage; therefore, residents with end-stage disease usually favor sweets and can be enticed to eat by adding sweet thickeners to their foods.
Offer high-protein and increased calorie foods.
Says someone is seated “in my place” Some residents prefer or demand the same seat every time and will become aggressive if someone else sits “in my seat.” Consider using name cards, or remove the resident’s seat until just before he/she arrives at the table.
Sits too close to others or someone he/she dislikes Be aware of residents’ preferred table-mates. Staff should be alert to making a last-minute seating change. An acceptable peer group is important.
CONCERNS AND PRIDE
Has no money to pay for a meal Issue meal tickets or “credit cards,” or have a bill filled out with a receipt that helps residents with “no money” to accept the meal.
Offer color play money for residents to use, or tell them the meal is paid for by insurance.
Inform them that the meal is part of the “club” membership; therefore, it is required that they eat dinner at the club.
Dining area, equipment
May behave disruptively because of room size and setup, type and size of tables, lighting, window glare, dishes, glassware, or utensils Have a variety of tables available to meet specific, individualized needs. A table for one or two may be needed if a resident with dementia is experiencing hostility or paranoia.
Square tables create a sense of “my space”; round tables create the illusion of someone eating off another’s plate.
Glare from windows or lights can create agitation; if feasible, encourage natural sunlight.
Provide cups and glassware that are easy to grasp. Consider serving soups and hot cereals in a mug or soup bowl with handles.
The Hand to Hand Mug is a special design cup for people who have difficulty grasping or holding a cup.
From the earlier stages of forgetfulness and confusion to the end stage of impending death, provisions must be made by caregivers and professionals to encourage and maintain adequate nutrition for residents with dementia. Strategies for managing some of these changes are summarized in the table.
The Family Guide to Alzheimer's Disease Video Series provides an indispensable resource offering encouragement and instruction to those affected by Alzheimer’s Disease.
The effect of progressive dementia, including Alzheimer’s disease, on swallowing function and independent eating/feeding will change over the course of the disease. The SLP, in collaboration with the physician, can play a vital role as a member of the multidisciplinary healthcare team in assessing the nature of the dysphagia and the contributing factors, developing an individualized plan of care to effectively manage the behaviors and strategies to ensure optimal nutrition and hydration, providing caregiver education in safe swallow strategies, and providing informed education regarding alternative nutritional systems. Basic assessment and management skills are also important for the day-to-day nursing staff.--------------------------------------------------------------------------------
Sue Curfman, MA, CCC, is a speech-language pathologist and a clinical program consultant with RehabCare Group, based in St. Louis. With certificates in case management and quality management, she chairs the Quality Work Group for the California Association of Healthcare Facilities. To send comments to the author and editors, please e-mail firstname.lastname@example.org. To order reprints in quantities of 100 or more, call (866) 377-6454.
1. Murphy LM, Lipman TO. Percutaneous endoscopic gastrostomy does not prolong survival in patients with dementia. Archives of Internal Medicine 2003;163:1351-3.
2. Finucane TE, Christmas E, Travis K. Tube feeding in patients with advanced dementia: A review of the evidence. Journal of the American Medical Association 1999;282:1365-70.
Advisory Panel on Alzheimer’s Disease. Fourth Report of the Advisory Panel on Alzheimer’s Disease, 1992. Washington, D.C.: U.S. Government Printing Office; NIH Publication No. 93-3520; 1993. Allen CK, Earhart CA, Blue T. Occupational Therapy Treatment Goals for the Physically and Cognitively Disabled. Rockville, Md.: American Occupational Therapy Association, 1992. Bayles KA, Tomoeda CK. Improving Function in Dementia and Other Cognitive-Linguistic Disorders: Guide and Resource Book. Tucson, Ariz.: Canyonlands Publishing, 1997. Hall CR. Eating: An Alzheimer’s activity. American Journal of Alzheimer’s Care and Related Disorders and Research 1990;5(3):5-9. Hellen C. Eating-mealtime challenges and interventions. In: Kaplan M, Hoffman SB, eds. Behaviors in Dementia: Best Practices for Successful Management. Baltimore: Health Professions Press, 1998. Mayo Clinic. Alzheimer’s: Nutritional challenges. Mayo Clinic.com, October 2003. Available at: www.mayoclinic.com/invoke.cfm?id=HQ00217. Mayo Clinic. Anticipating end-of-life needs of people with Alzheimer’s disease. Mayo Clinic.com, March 2005. Available at: www.mayoclinic.com/invoke.cfm?id=HQ00618. Medicare Skilled Nursing Facility Manual: Special Instructions for MR of Dysphagia Claims (Rev. 3, 11-22-00). Murray J. Manual of Dysphagia Assessment in Adults. San Diego: Singular Publishing Group, 1999. National Institute on Aging, Alzheimer’s Disease Education & Referral Center. 2001-2002 Alzheimer’s Disease Progress Report. Available at: www.alzheimers.org/pr01-02. National Institute on Aging, Alzheimer’s Disease Education & Referral Center. 2003 Progress Report on Alzheimer’s Disease. Available at: www.alzheimers.org/pr03/index.asp. Stefanakos K, Crouch P. Dementia A to Z: A Comprehensive Training Resource Text for the Speech Pathologist. Tampa: The Speech Team, Inc., 2003. U.S. Congress, Office of Technology Assessment. Special Care Units for People With Alzheimer’s and Other Dementias: Consumer Education, Research, Regulatory, and Reimbursement Issues. Washington, D.C.: U.S. Government Printing Office, 1992.