Hand-Feeding Techniques for Nursing Facility Residents Module One: Dementia – Overview and Impact

Participant’s Manual

Module One: Dementia – Overview and Impact Module One: Dementia – Overview and Impact 1. Overview of Dementia 2. Types of Dementia 3. Normal brain development vs. brain changes with Dementia 4. Communication impairments with dementia 5. Sensory Changes 6. Fight, Flight, Fright (Freeze) Response 7. Use of C3P to problem solve residents with Dementia Objectives: Upon completion of the course, the participant will be able to: 1. Define cognition and discuss the role of cognition in daily life. 2. Discuss how dementia causes brain changes that impact the resident’s ability to think, reason, and remember. 3. Discuss the term dementia and the term Alzheimer’s and why they are sometimes used interchangeably. 4. Describe sensory changes (taste, smell, vision, hearing, and touch) that occur in Residents with dementia 5. Define how a resident with dementia may respond when a fight, flight or fright response is stimulated. 6. Provide an example of how the C3P problem solving method can be used when caring for a resident with dementia.

On a daily basis we perform multiple tasks that require cognitive functioning. In most instances we are not consciously aware of the intricacies required of such everyday tasks as tying a shoe, recalling the name of your first grade teacher, recognizing colors, or balancing your checkbook. And yet some area of our brain has been very actively involved in ensuring our ability to perform thousands of various tasks and skills on a daily basis. The Oxford Dictionary defines “cognition” as the mental action or process of acquiring knowledge and understanding through thought, experience, and the senses. We recognize the maturation of the brain as we observe infants transform into toddlers, children, teenagers, and finally adults. Each stage adds to the building blocks of knowledge, reasoning, decision making, and judgement required for successful advancement to the next life stage. Every day at home, work, and in life, we come into contact with many sources of information. This information is provided to us through our senses…….what we see, hear, taste, and smell. Our senses do not work alone. Once the “sense” picks up a signal (stimuli), it has to send it to the brain. The brain then has many jobs to do. The brain will receive the information, break it down and make sense of it, store it into our memory banks, and give it back to us when we need it. If our brain is able to handle all of this in a useful way, we have the tools we need to do a good job at home, work, school and in life. This ability comes from the brain’s “cognitive skills”.

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The brain’s cognitive skills include long- and short-term memory. This is what we learned or experienced either a long time ago……..or what we learned just recently. Cognitive skills also include auditory processing and visual processing……..what we hear and what we see. Importantly, our brain controls logic & reasoning. These help us to make sense of the world we live in. Working together, all of these cognitive skills play important roles in processing new information. That means if even one of these skills is weak, no matter what kind of information is coming your way, being able to hold on to the information, process the information or understand the information will be damaged.1 Additionally, we have learned that changes occur in the aging brain. These changes vary from individual to individual but are not generally severe enough to interfere with activities of daily living. Cognitive changes in the normal aging process can be subtle. As we age, we may notice we are mentally less flexible, requiring more time for the processing of information. The ability to multitask declines as a result of a decrease in the aging brain’s difficulty paying attention. Memory may also be affected and names, faces, places, etc. may become harder to recall. Many cognitive abilities are relatively unchanged in the normal aging brain. For example, Howieson (2015) notes that language and vocabulary are retained during the normal aging process. General knowledge recall remains close to normal as does the ability to perform well- honed skills such as addition and subtraction. Judgement can be negatively affected in the normal aging brain when both the cognitive and emotional aspects of the brain’s functions are required. Reflexes, or response time to situations may slow. Additional study of the normal aging brain on cognition is more important than ever due to the increase in the number of persons living beyond the age of 80 years.2

Dementia Dementia is a syndrome, or an umbrella term, that results from an acquired brain disease. Dementia is characterized by progressive deterioration, beyond the scope of “normal aging”, in memory and other cognitive functions including, language, judgement, abstract thinking, and executive functioning. Social and occupational functioning is also negatively affected. As the individual’s cognition declines, the ability to comprehend and produce linguistic (verbal) information is impaired. Behavioral problems are common as a result of abnormal changes at the cellular level of the brain. These problems may be manifested by paranoia, hallucinations,

1 American Speech-Language-Hearing Association. Dementia: An Overview. Retrieved from: https://www.asha.org 2 Howieson, D. (2015). Cognitive Skills and the aging brain: What to expect. Cerebrum, December, 2015

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and repetitiousness. These behaviors, in turn, can impair communication.3 As the disease progresses, the declines in the brain become more severe.

A number of diseases fall under the umbrella term, “dementia”. The 4 most common causes include: . Alzheimer’s disease: Alzheimer’s progresses gradually. As the brain cells become more damaged, the symptoms associated with this disease become more severe. Alzheimer’s generally affects memory first and increasing forgetfulness may be the first sign that something is wrong. Other symptoms include changes in mood, the inability to perform more than one task at a time (multi-task), confusion, repeating things, difficulty voicing their thoughts, not recognizing familiar places.4 Alzheimer’s disease includes about 60% or more of individuals with dementia. . Vascular Dementia: About 20% of the individuals with dementia are diagnosed with Vascular Dementia, an impairment caused by a blockage in the brain’s blood vessel system. When a clot forms in a blood vessel in the brain, the blood flow is blocked and brain cells in the area of the clot are unable to receive oxygen and nutrients resulting in cellular death. The area of the brain can vary depending on the location of the clot. Individuals with vascular dementia can present with a variety of symptoms including: memory loss, confusion, and inability to maintain attention. Many cases of vascular dementia occurs suddenly (i.e., CVA or stroke). In other cases, the onset is gradual and is related to recurring blockages of small brain vessels.4

3 American Speech-Language-Hearing Association. Dementia: An Overview. Retrieved from: https://www.asha.org 4 Alzheimer’s Association. Common causes of dementia. Retrieved from www.alz.org/mnnd

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. Lewy Body (DLB): This type of dementia is caused by the abnormal collections of proteins (Lewy Bodies) that have formed inside of the nerve cells of the brain. Lewy Body proteins have also been noted in individuals with Parkinson’s disease. This type of dementia causes: fluctuations between lucidity and confusion, problems with memory, visual hallucinations, muscle rigidity, slow movements, involuntary tremors.5 . Frontotemporal Dementia (FTD): Rare occurrence. This dementia affects the front and sides of the brain and negatively impacts the functions of the areas that are damaged. This form of dementia occurs at a younger age, generally, and will progress more rapidly. Symptoms can include: changes in personality, judgement, and social skills. This disease can also cause an inability to control appetite and a weight gain can result.5

Clinical Criteria for diagnosing Dementia (of all causes):6 Dementia is diagnosed when there are cognitive or behavioral symptoms that: 1. Interfere with the ability to function at work or at usual activities 2. Include a decline in levels of functioning and performing 3. Are not caused by delirium or a major psychiatric disorder 4. Cognitive impairment is detected and diagnosed 5. The cognitive or behavioral impairment involves a minimum of two or more of the following:7 a. Impaired ability to acquire and retain new information (AEB repetitive questions, repetitive conversations, misplacing personal belongings, forgetting events or appointment, getting lost on a familiar route)

5 Ibid 6 McKhann, G., Knopman, D., Chertkow, H., Hyman, B, Jack, C., Kawas, C., Klunk, W., Koroshetz, W., Manly, J., Mayeux, R., Mohs, R., Morris, J., Rossor, M., Scheltens, P., Carrillo, M., Thies, B., Weintraub, Phelps, C. (2011). The diagnosis of dementia due to Alzheimer’s disease: Recommendations from the National Institute on Aging-Alzheimer’s association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimer’s and Dementia, 7, 263-269. 7 Cunningham, E., McGuiness, B., Herron, B., & Passmore, A. (2015). Dementia. Ulster Medical Journal, 84(2), 79-87.

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b. Impaired reasoning and handling of complex tasks, poor judgement (AEB poor understanding of safety risks, inability to handle finances, poor ability to make decisions, inability to plan complex or sequential activities, difficulty with multitasking c. Impaired visuospatial abilities (AEB inability to recognize faces or common objects, inability to operate simple equipment or implements, inability to orient clothing to body. Often cannot locate items in full view). d. Impaired language functions - includes speaking, reading and writing (AEB difficulty thinking of common words while speaking, hesitations, and errors in speech, spelling and writing. Language difficulties may also include: less concise discourse with fewer ideas, repetitious language by asking same question over and over, tangential language, circumlocution, loss of meaningful speech, difficulty following and maintaining a conversation, difficulty following multi-step commands. Bilingual residents may demonstrate errors in selecting and maintaining appropriate language during conversations and will eventually regress to use of the primary language only.) e. Changes in behavior, personality or comportment (AEB uncharacteristic mood swings, agitation, impaired motivation, initiative, apathy, loss of drive, social withdrawal, decreased increase in previous activities, loss of empathy, compulsive or obsessive behavior, socially unacceptable behavior). During the later stages of dementia, people lose two major brain functions that have major influence on care issues. First, the brain loses the ability to recognize (agnosia). The ability to recognize people, places, objects, and even their own bodily sensations is common. Secondly, people with Alzheimer’s lose the ability to execute purposive actions (apraxia) so they no longer are able to perform actions that are commonplace and familiar. This ability is generally lost with complex actions or tasks first but it gradually affects the basics. This includes EATING. They don’t understand the need to eat, what to eat, or even how to eat, i.e., use of a fork, spoon, knife, glass, napkin, etc.8 What is Alzheimer’s disease and How Does it Differentiate from dementia? Alzheimer’s is the most common form of dementia and accounts for 60-70% of all cases. Dementia is the umbrella…….Alzheimer’s is the principal disease associated with dementia. Alzheimer’s is a progressive disease that slowly becomes worse over time as more and more brain cells are destroyed. Most individuals with Alzheimer’s are diagnosed after the age of 65 but Alzheimer’s can occur in people much younger. As the disease progresses, the symptoms associated with Alzheimer’s advance from mild to severe. At first, for example, memory loss may be mild but by the time the disease has progressed to the severe stage, the resident is no longer even able to carry on a conversation! Alzheimer’s disease is caused by the presence of abnormal clumps or amyloid plagues and tangled bundles of fibers (neurofibrillary tangles) that interfere with the flow of information within the brain. Another characteristic of Alzheimer’s is the loss of connections between the nerve cells, or neurons, of the brain and other body organs. Most of the damage appears to occur

8 Social Csre Institute for Excellence: Advanced dementia and end of life care. https://www.scie.org.uk/dementia/advanced-dementia-and-end- of-life-care/

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primarily, at first, in the hippocampus of the brain. The hippocampus is the part of the brain that is essential to the storage of memories. As more and more brain cells die, other parts of the brain are also affected, the brain itself shrinks, and damage becomes extensive. Most people live an additional 4-8 years after diagnosis although they can live longer.9

Dr. Alois Alzheimer is credited with discovering and describing Alzheimer’s in 1906. Dr. Alzheimer had cared for a female patient who had died following an illness that featured unusual mental symptoms. Following her death, during, autopsy and examination of the brain, Dr. Alzheimer found the abnormal clumps and tangled fibers of neurons.9 In the United States today, there are 5.3 million people with Alzheimer’s. This number is expected to reach 16 million by the year 2050. One in nine people over the age of 65 have Alzheimer’s and 1 in 3 people over the age of 85 have the disease. The CDC reports that Alzheimer’s is the 6th leading cause of death in the U.S.10The cost of caring for Alzheimer’s patients in the U.S. is estimated to be $236 billion in 2016. (Alzheimer’s Association).

9 National Institute of Health. What is Alzheimer’s? Retrieved from: https://www.nia.nih.gov/health/what-alzheimers-disease 10 Alzheimer’s Net. Alzheimer’s Statistics. Retrieved from: https://www.alzheimers.net/resources/alzheimers-statistics/

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Sensory Changes in the Resident with Dementia Much of life’s pleasures come from our ability to stimulate our five senses……..sight, hearing, taste, touch and smell. Individuals with dementia, however, frequently experience sensory impairment and often have problems with misinterpreting their environment. Communication involves both cognition and language. If an individual has an impairment of language, it is usually accompanied by an impairment of one or more of the cognitive processes (attention, perception, memory and executive functioning). In a similar manner, a disruption in one or more cognitive processes will have an effect on the individual’s language and their ability to communicate with others.11 As the disease progresses and memory declines, individuals may forget even the most recent conversations. This impairs the individual’s ability to maintain a conversation. The individual has difficulty staying on topic, remembering details, and processing information received. In time, the individual uses language skills less and less to express themselves.5 Nonverbal communication (facial expressions, gestures, body language and posture, tone of voice) all become increasingly important when caring for the resident with dementia. Even when a resident can no longer comprehend what you are saying, they will be able to understand the nonverbal distinctions you display.

11 American Speech-Language-Hearing Association. Dementia: An Overview. Retrieved from: https://www.asha.org

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Smell is recognized as one of the early signs of several of the neurodegenerative diseases like Alzheimer’s. Researchers have been able to link the loss of smell with the increase in the amount of the abnormal protein (tau) found in the brain of individual’s with Alzheimer’s.12 Smell is created from specialized sensory cells (olfactory sensory neurons). These cells are located in a small area high inside the nose. When microscopic molecules, produced by substances around us (the aroma of pumpkin bread cooking or coffee brewing), are released, these receptors are stimulated and send messages to the brain. The brain then identifies the smell. Smell can reach the olfactory neurons through the nostril or from a channel connecting the roof of the throat to the nose. Chewing food, in turn, releases aromas that stimulate the olfactory neurons in this manner. If the channels are blocked, odors are unable to reach the sensory smells and stimulate them. This, in turn, reduces the ability to taste.13 Taste is closely connected to the sense of smell. When an individual chews, drinks, or digests, molecules are released that stimulate sensory cells located in the mouth and throat (gustatory cells). When the gustatory cells are stimulated, messages are sent to the brain and receptors respond and identify taste qualities (sweet, sour, bitter, salty, and umami, or savory). In addition to taste, other chemosensory mechanisms create other sensations such as heat, cold, and texture. This is also the way in which the “heat” of certain foods (peppers, spices) are detected as well as the “coolness” of other food items such as peppermint. Without the sense of smell and taste, an individual’s enjoyment of food is greatly reduced as all foods will tend to taste very bland.14 The taste for sweet foods lingers longer than other taste qualities and residents may be enticed to eat if sweetening is added.

Vision is affected in people with several different forms of dementia including those individuals with Alzheimer’s. These vision abnormalities occur because of the significant changes in how the brain receives and interprets visual information. Vision may be impacted in several different ways:

12 University of Pennsylvania Medical Center (2004). Loss of smell linked to key protein in Alzheimer’s disease. Science Daily. Retrieved from http://www.sciencedaily.com/releases/2004/03/040312090410.htm 13 National Insititue of Health. Smell disorders. National Institute of Deafness and Other Communication Disorders (NIDCD). Retrieved from: http://www.nidcd.nih.gov/health/smell-disorders 14 National Insititue of Health. Taste disorders. National Institute of Deafness and Other Communication Disorders (NIDCD). Retrieved from: http://www.nidcd.nih.gov/health/taste-disorders

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The individual is unable to perceive dimensionality. The ability to judge depth correctly is lost. Reduction in peripheral vision. This causes the individual to experience tunnel vision. An object has to be directly in front of the individual at eye level in order for the individual to see it. Change in color contrast. The individual must have a high level of contrast between objects in order to visual them separately. A brown blanket on a brown couch might not be noticed while a red blanket would be more noticeable. Lighting. The need for brighter lighting is not uncommon in elderly individuals but it does become more pronounced with diseases such as Alzheimer’s. Glare and shadows. Glare and lengthening shadows created by the sun’s position can be confusing to individuals with dementia. Providing bright, steady light can be helpful. Need for simplicity. Complex visual environments are difficult for the individual with dementia to interpret and makes it more difficult for them to organize their thinking. This reduces the individual’s ability to function.15

Hearing loss may be present in residents with dementia. Hearing loss can impair an individual’s ability to communicate and contribute to the occurrences of social isolation and further cognitive decline.16 Touch can be affected by dementia as the individual experiences a decline in sensitivity to touch. This decline affects the individual’s perceptions of pain and of temperature. These alterations may be manifested as increased or decreased responsiveness to pain and temperature based on the area of the brain affected. Residents with dementia, for example, may have a knee injury but indicate they have pain all over due to the inability to differentiate or localize their pain..17

The Responses of Fight, Flight, Fright The phrase, “Fight or Flight” was coined by a Harvard professor named Walter B. Cannon in 1927. The phrase was used to describe behaviors that occur when humans are confronted with a perceived threat. These terms are still widely used today. Fright is also a response to a real or potential threat.

15 Bier, D. Improving Alzheimer’s and Dementia Care: The eyes have it. PsychCentral. Retrieved from https://psychcentral.com/lib/improving- alzheimers-and-dementia-care-the-eyes-have-it/ 16 Lin, F., Metter, E., O’Brian, R., Resnick, S., Zonderman, A., and Ferrucci, L. (2012). Hearing loss and incident dementia. Jama Neurology (Archives of Neurology), 68(2), 2214-220. 17 Fletcher, P., Downey, L., Golden, H., Clarm, C., Slattery, C., Paterson, R., Rohrer, J., Schott, J., Rossor, M., and Warren, J. (2015). Pain and temperature processing in dementia: a clinical and neuroanatomical analysis. Brain, 138(11), 3360-3372.

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The “fight” response occurs when an individual is threatened. The “flight” response occurs when the threat is deemed to be too formidable to overcome and the individual elects to flee from the threat. Fright is another response that can occur. Fright is a feeling of dread, alarm, fear or panic that can happen when a threat is real or perceived. In these instances, hormones (especially adrenaline) are released by the sympathetic nervous system to provide assistance in overcoming the actual or perceived threat. Understanding the response of fight, flight and fright is important in understanding how to care for residents with dementia. Because the resident has experienced a progressive loss of abilities, they are prone to becoming anxious and agitated which can produce acting out behaviors. This response is expressed as a behavior and if the behavior is “fight” the resident may respond by yelling, resisting care, and attempting to hit others/caregivers, etc. If the response is “flight”, the behaviors displayed include leaving the area, or situation.18 Residents who experience fright may respond by withdrawing, refusing care or refusal of care. Unpredictability is a major cause of stress. The resident with dementia will view their environment, most often, as unpredictable. It only takes a small amount of change in that environment to trigger stress which in turn triggers the defense mechanisms. Stress-related behaviors are the result. When addressing problem behaviors it is important that the underlying cause of the stress be identified.19 Changes in behavior are commonly noted as the dementia progresses. Brain changes will differ from individual to individual based on the type of dementia, the part of the brain affected, and the stage of the illness. In addition, behaviors are caused by unmet needs, established traits and habits of the individual, environmental factors, and presence of stress.20

C3P Model: Problem Solving Amella and Batchelor-Aselage (2014), emphasized the importance of recognizing that behavior, in the resident with Dementia, is a form of communication and/or a form of control and is derived from an unmet need. A framework to support an approach to addressing behaviors was developed to promote a systematic approach to addressing behaviors indicative of feeding difficulties, in the dementia resident. The framework is called C3P: change the person, change the people, and/or change the place.

18 Dementia Partnerships. Neurological impairment: Changes to information processing and emotional responses. Retrieved from: http://www.dementiapartnerships.org.uk 19 Norwood, A., & DiMaria, M. (2012) Dementia Care: Proactive management helps problem behavior. Health Progress, September-October, 2012 20 Revised by Smith.M. (2005) from Smith, M. & Buckwalter, K. (1993). Acting up and acting out: Assessment and management of aggressive and acting out behaviors. Geriatric Mental Health Training Series, Hartford Center of Geriatric Nursing Excellence, College of Nursing, University of Iowa.

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As outlined by the authors, Amella and Batchelor-Aselage, C3P includes:21

Change the Person: A thorough nursing assessment is needed in order to identify any underlying causes for the behavior. This may include subjective and objective assessments such as reviewing weight records for any weight loss, reviewing meals patterns to determine practices and intake, reviewing lab values for any abnormalities that may create issues, and reviewing bowel movement regularity. Specific interventions include: . Assisting with mealtime rituals the resident may have . Observing religious rite, prohibitions . Acknowledging cultural or other special cues . Following preferences for end-of-life decisions . Developing interdisciplinary care plan

Change the People: Addressing feeding difficulties requires a person-centered care approach. Individualizing the resident’s meal time to meet his/her own unique needs is more likely to be successful. . Be sure enough staff is available and are adequately trained . Provide a person-centered approach to meals . Double meal portions when resident demonstrates he/she eats better at a specific time (breakfast, lunch or dinner) . Cueing – verbal and visual cues with short, simple commands to direct behavior during meal . Encourage to self-feed based on functional ability. . Allow time for resident to eat at his/her pace

Change the Place: An environment that supports eating is critical to the success of resident feeding. The authors, Amella and Batchelor-Aselage, suggest that even small changes to the eating environment can be

21 Amella, E. & Batchelor-Aselage (2014). Facilitating ADLs by caregivers of persons with dementia: The C3P Model. Occupational Therapy Health Care. 28(1), 51-61.

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conducive to an improved intake of food. It is also suggested that contrasting colors be used (as opposed to a mashed potatoes on a white plate placed on a white tablecloth), and that eating items be placed in the same place on a daily basis. Being sure the resident is in a proper position for eating will also enhance the process as will ensuring the resident is in a small group rather than a large setting.21 . Encourage to eat in dining area to increase food intake . Use standard dinnerware . Use contrasting background/foreground . Seat appropriate for resident . Keep noise distractions to a minimum. Do talk with the resident. Personal conversations are encouraged. . Light, pleasant music is helpful . Odor: use smell of cooking foods to stimulate appetite . Provide any adaptive equipment needed by the resident.

Mechanisms of Eating The intake of food is controlled by the homeostatic and the hedonic pathways. The homeostatic process, primarily through the hypothalamus, regulates hunger and satiety. Hunger is triggered by a depletion of energy stores which produces the motivation to eat. Circulating hormones in the body detect when energy stores are low and send signals to the hypothalamus to produce the feeling of hunger. While the hypothalamus is important to this process, the entire central nervous system is involved. The hedonic pathway (rewards-based regulation) is capable of overriding the homeostatic pathway even if the energy stores are full. During this process, dopamine pathways are activated.22 The mechanical process of swallowing:23 1. Food Transport – food is carried into the mouth. The tongue moves the food toward the back lower teeth for chewing (food processing). 2. Food Processing – Food is reduced in size by chewing and softened by salivation. Chewing occurs until the food reaches a consistency that is ready to be swallowed. Chewing requires movement of thee tongue, cheek, soft palate and hyoid bone. 3. For Liquid Processing: liquid taken into mouth. The tongue and soft palate are used to help seal the oral cavity and prevent the liquid from escaping into the oropharynx before the swallow occurs. An inadequate seal can cause liquid to enter the pharynx. This potential increases with aging. 4. Transport: Once the food is chewed to the appropriate consistency, it is moved back onto the tongue. The back of the tongue drops down to open the back of the oral cavity. As this process occurs, the liquid is squeezed into the pharynx. The same process occurs with liquids. This process is primarily driven by the tongue, not gravity.

22Lutter, M. & Nestler, E. (2009). Homeostatic and Hedonic pathway signals interaction in regulation of food intake. American Journal of Nutrition, 139(3), 629-632. 23 Matsuo, K., & Palmer, J. (2008). Anatomy and physiology of feeding and swallowing – Normal and abnormal. Physical Medicine Rehabilitation Clinics of North America, 19(4), 691-707.

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5. Pharyngeal: The pharyngeal swallow is a rapid action and only takes about one second. During this phase, the food bolus is propelled through the pharynx and the upper esophageal sphincter into the esophagus. Several airway protective mechanisms take place during this phase to prevent aspiration from occurring. 6. Esophageal: The lower esophageal sphincter is normally at tension in order to prevent food regurgitating into the esophagus from the stomach. The sphincter relaxes during a swallow and this allows the bolus of food to pass into the stomach. When the good enters the esophagus through the upper esophageal sphincter, active peristalsis moves the food bolus forward into the stomach through the lower esophageal sphincter.

The acts of eating, swallowing, and breathing are well coordinated with one another. Breathing ceases very briefly during the process of swallowing food due to the physical closure of the airway as well as by neural control from the brainstem. When drinking liquids, we usually begin the intake of liquid during the inspiratory phase and a brief pause in respiration follows before expiration occurs. The eating of solid food can alter the respiratory rhythm. .The alteration begins during the process of chewing. The normal process is to exhale…..then swallow……the exhale.

Eating/Feeding Behaviors in Residents with Dementia Problems with eating are commonly present in residents with dementia. These problems can include:24  an increase or decrease in the amount of food ingested  a change in how often the resident eats  inability to properly use eating utensils  playing with food  a change in the selection of foods with sweet foods being most commonly selected if given a choice

24 Cipriani, G., Carlesi, C., Lucetti, C., Danti, S. & Nuti, A. (2016). Eating behaviors and dietary changes in patients with dementia. American Journal of Alzheimer’s Disease and Other Dementias, 31(8), 706-716.

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 eating items with no food/nutrition value  inability to recognize food as food  inability to execute the plan to ingest food (what to transport to the mouth, what quantity, what means, etc.) Eating and/or feeding problems can differ based on the underlying source of the resident’s dementia. Weight loss, for example, is common in the resident with Alzheimer’s dementia. This weight loss does not just occur with severe forms of the disease or in resident’s with obvious feeding issues. Instead, this weight loss may be present even before the diagnosis has been determined. Other issues include: refusal to eat, indifference to food, inability to handle the food bolus once it is in the mouth (making them prone to aspiration during swallowing). As many as one-third of Alzheimer’s Dementia residents will demonstrate a preference for sweet foods.24 Major changes in dietary habits are common in this form of dementia, even from the earliest stages of the disease. Residents may demonstrate evidence of overeating, bulimia, cravings for sweets, weight gains, obsession with specific foods, snatching food from other sources, trying to eat items that are inedible and development of unusual eating behaviors.5 Residents who are diagnosed with Lewy Body Dementia most often present with swallowing difficulties. Difficulty swallowing food or liquid is common.5 Experiencing eating problems following a stroke is a common occurrence, therefore several aspects of difficulty are present in residents with Vascular Dementia. These may include: problems with handling food on the plate, transporting food to the mouth, and swallowing. Hoarding of food in the mouth is common. Swallow mechanisms can also be impaired and this increases the risk of aspiration. Residents with Vascular Dementia often prefer high fat, sweet foods over any others.5 Other behaviors frequently seen in the resident with Dementia include: turning away of the head when attempts are made to feed, clamping their mouth shut, or pushing away assistance.

Assessment of Residents Who Exhibit Feeding Difficulties

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The Edinburgh Feeding Evaluation in Dementia Scale is not a screening or diagnostic tool. It is, however, a very useful assessment tool to employ when determining and documenting baseline behaviors associated with feeding. It is also used to help determine how much assistance the resident with Dementia requires for eating/feeding.

There are a total of eleven (11) items in the tool. Ten of the questions address mealtime behaviors. Four (4) questions signal that assistance is already needed or might be needed while the other six (6) questions assess functional and cognitive decline. The last, or eleventh (11th) item requires the rater to determine which of these levels of support the resident requires during feeding:  Supportive-educative support such as cueing, refocusing, meal set-up)  Partly-compensatory assistance indicates the resident is involved with his/her meal but requires physical assistance  Wholly-compensatory assistance is used for the resident who requires hand-feeding This assessment tool can be administered by:  Observing the resident during a meal  Asking caregivers to report behaviors during a meal Each item is scored 0 to 2 with 0 equivalent to never, 1 equivalent to sometimes and 2 equivalent to often. The higher the score the greater the dysfunction.25 More information on the EdFED Evaluation Scale is available at: http://alliedhealth.ceconnection.com/files/HowtoTryThisTheEdinburghFeedingEvaluationinDem entiaScale-1454601642978.pdf (A link to a video demonstrating application of the EdFED Evaluation Scale is contained within this very informative article) Assessment information can be obtained from a variety of sources including: the Resident, the Family/Caregivers, Staff Members, and Observations. The initial assessment serves as the baseline. The effectiveness of interventions can be measured by comparing later assessments to the baseline information. The worsening of eating problems, caused by the progression of dementia effects, is demonstrated through sequential assessment information.

25 Stockdale, R. & Amella, E. (2008). How to try this: The Edinburgh Feeding Evaluation in Dementia Scale. American Journal of Nursing, 108(8).

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Batchelor-Murphy and Crowgey (2016), in the book, “Evidence-Based Geriatric Nursing Protocols for Best Practice, 5th Ed.” recommend the nurse:26  Seek information related to the resident’s rituals and preferences for mealtimes. Rituals may include hand washing, food blessings or saying grace, religious practices that may affect food preparation or types of food that can be eaten, and cultural or family influences on mealtimes. During the assessment, ask questions about the types of food the resident likes to eat and what size portion is usual. Find out what time of day the resident prefers to eat and how many times a day is usual.  Document any preferences to end-of-life care as it applies to food and fluids.  Use Assessment tools: EdFED-Q, Katz Index of Independence in Activities of Daily Living and the Food/Diary/meal portion assessment method. Most facilities have an additional standard assessment tool that requires the documentation of nutritional status, eating problems, dietary preferences and other pertinent information. The Katz Index of Independence in Activities of Daily Living is a tool designed to assess the functional status by measuring a resident’s ability to independently perform basic Activities of Daily Living. More information on the Katz-ADL may be found at: https://consultgeri.org/try-this/general- assessment/issue-2.pdf A careful assessment can help to define the source(s) of mealtime difficulties. According to Batchelor-Murphy and Crowgey (2016), such difficulties may come from both psychological and physiological sources. Cognitive/neurological sources of mealtime difficulties include dementia, Parkinson’s disease, amyotrophic lateral sclerosis, and stroke. Psychological sources include depression which is common in elderly residents, and from Iatrogenic sources. Iatrogenic causes include: lack of appropriate adaptive equipment; use of physical restraint that limit movement, position, and the resident’s ability to self-feed; discrepancy of chair to table height; use of a wheelchair instead of a table chair; use of disposable dinnerware.26

26 Batchelor-Murphy, M. & Crowgey, S. (2016). Mealtime difficulties in dementia. In Boltz, M., Capezuti, E., Fulmer, T., & Zwicker, D. (Eds). Evidence-Based Geriatric Nursing Protocols for Best Practice, (5th Ed). Springer Publishing Co. NY.

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