Managing dysphagia in residents with dementia: skilled intervention for a common--and troubling--disorder.

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.

Assessment

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.

Chart review. 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:

* diagnoses

* current weight

* recent weight changes

* current and historic therapeutic/altered diets

* current eating habits, including food types and amounts consumed at scheduled and unscheduled times

* self-feeding skills throughout the course of the meal

* eating and chewing difficulties

* signs/symptoms (from nursing notes) of congestion, coughing, choking with drinking or taking medications, fever, and lethargy

* x-ray results (e.g., chest and modified barium swallow)

* history of pneumonia

Resident/caregiver/nursing interview. 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.

Sensory function. 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

* 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 hyperextension. 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.

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:

* rotary chew pattern

* lateral chew/chomping pattern and jaw-jerk reflex

* suck-swallow pattern

* absent oral motor function for chewing

Salivation. 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 antipsychotic drugs. If salivary flow is adequate, the oral cavity will appear wet; if hyposalivation 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.

Assessment Analysis

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

* reduced p.o. intake secondary to behavioral issues possibly related to dementia

Treatment Recommendations

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.

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 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.

Conclusion

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 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 [e-mail]. To order reprints in quantities of 100 or more, call [phone].

References

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.

Bibliography

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. MayoClinic.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. MayoClinic.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.

BY SUE CURFMAN, MA, CCC

Adapted with permission from an original article published at www.speechpathology.com.

Table. Strategies for managing residents with dementia and dysphagia

Challenge                           Intervention

Forgetfulness and disorientation
Misinterprets or ignores the body   Offer liquids and water consistently
signals of hunger and the need for  throughout the day, as residents
food                                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      Residents frequently do not
eat/does not recognize food as      transition from the before-meal
food                                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        Increase the number of finger foods
utensils                            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.
Does not use utensils correctly     Limit the number of utensils. Often
                                    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    Serve one course at a time so that
much food or too many containers    the necessity of making choices is
are present at one time             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        Establish the same routine at each
understand what is expected of      meal. Reinforce with simple one-step
him/her at mealtime                 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   Use simple words. Touch and redirect
task of eating, limiting the meal   the resident to the task of eating.
from being consumed entirely        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   Assess food pieces for size,
to swallow safely                   thickness, and consistency and make
                                    necessary adjustments. Consider
                                    providing precut meats and other
                                    food items cut into bite-size
                                    pieces.
Eats nonedibles                     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.

Perceptual dysfunction
Has difficulty discriminating       Focus on color contrast in terms of
boundaries between items            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    Develop a list of food preferences
being understood                    and dislikes.
                                    Use multisensory 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.

Anxiety
Says someone is seated "in my       Some residents prefer or demand the
place"                              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         Be aware of residents' preferred
someone he/she dislikes             tablemates. 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  Have a variety of tables available
room size and setup, type and size  to meet specific, individualized
of tables, lighting, window glare,  needs. A table for one or two may be
dishes, glassware, or utensils      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.