Clinicians who are new to field or are just new to geriatric speech pathology are often unprepared or nervous about working with clients with dementia. This is completely understandable, as university speech therapy clinics typically have few, if any patients with dementia, and graduate clinical placements may or may not include long-term care facilities. Often, students learn about the causes and symptoms of dementia, and theories behind treatment, without ever meeting a patient with dementia before beginning their CFY (Clinical Foundation Year). Clinicians who have changed work settings might have been in employed in the field for years without working with a person with dementia.
Dementia can be a daunting and intimidating diagnosis to approach. The person may or may not exhibit behavioral disturbances. The person could be aware of their own communication and cognitive deficits, or might not have a clue about their change in cognitive-linguistic skills. Depression, anger and anxiety often accompany dementia. Family, caregivers, and staff will demonstrate various degrees of knowledge, understanding and support. Even fellow therapists might argue as to whether or not people with dementia can benefit from speech-language therapy.
Luckily, there are more and more resources related to dementia, and the new or less experience clinician can seek them out. I firmly believe any clinician working with adult and geriatric clients must include training in dementia and cognitive changes as part of continuing education.
Why is dementia therapy so tough sometimes?
● Staff don't always "get it." Nurses are actually sometimes trained to reorient versus validate a patient beliefs, which can increase agitation, fearfulness, and anxiety.
● Staff and caregivers may not know how to cue and support the patient, and may not carry over recommendations taught by the SLP.
● It can take weeks for a patient with dementia to catch on to new routines, activities and information.
● Staff and caregivers are often in a hurry, and do not take the time to communicate at a patient's level.
● The patient might be unpleasant, rude or inappropriate,which drives loved ones and caregivers away.
It is up to us as SLPs to set the example with patients with dementia, and to help others see the potential that all patients have. We can do this by continuing to look at treatments ideas, theories behind treatments and new research, and by presenting ourselves and the authority on cognitive-linguistic and communication deficits associated with dementia.
Next week: Web picks for dementia education and insight!
Remember those summer reading lists you got as a kid? I, for one, loved the lazy summer days when I could go to the library or bookstore and spend hours reading. Now, many libraries have summer reading lists, and even NPR has book reviews and suggested reading lists. This week, I noticed a patient reading a novel and asked her how it was progressing. This lead to some interesting conversations - recalling the plot line so far, predicting what would happen next, discussing the author's other books, and remembering our favorite and least favorite books.
Since I had not read the book, the patient offered to loan me her copy. I opted to buy it myself, and since I love to read, it was an enjoyable "homework" assignment to myself so that I could catch up with her and we could discuss the book. I also looked online for various book club discussion questions and plot synopses; yes, I was probably giving myself spoilers, but in order to use the book as therapy material I needed to catch up.
It would be difficult to read and finish every book that a patient reads, but it was fairly simple to get enough information on the book to have a discussion about it. I thought about how I could incorporate book club activities and reading into therapy, and came up with some ideas:
- Let the resident pick the author or subject.
- Plan to go slowly. Between therapy sessions with OT, PT, and speech therapy, family visits, and daily activities, it might take a while to finish a chapter. The patient might be discharged before the book is finished.
- Review information as much as needed.
- Use short stories and magazine articles instead of longer books.
- Find large print books as needed.
- Use books on tape to substitute for print as needed, or as a way to help the patient finish the book and review.
- Use audiobooks yourself if you want to catch up with your patient during your commute.
- Find articles about the author to share with your patient.
- Look in the book itself for book club questions; many books are now including discussion questions.
Using your clinical skills, book discussions can target speech, memory, word retrieval, thought organizations, pragmatics, comprehension, and more. If needed, take turns reading passages out loud with your patient.
Summer is in full swing, and while many of us are planning vacations, barbecues, and pool parties, many of our patients are unable to enjoy the summer activities that they once enjoyed. At this time time of year, patients may enjoy therapy activities that allow them to have a bit of good old summertime fun! Here are some ideas:
● Plan a mini picnic on a patio (if your facility has one) or bring a beach umbrella to set up. Serve watermelon (which the residents can help cut if they are able), sandwiches, and lemonade or iced tea. Pick a day when the temperature is not too hot, or plan for earlier in the morning or later in the evening. To make this even more fun, plan with other therapists so that they can bring a patient and treat as well. Have an indoor picnic if heat or weather is a concern.
● Collect beach sand, shells, and an ocean sounds CD, and have a beach day. Reminisce about vacations past. Build a sand castle indoors or outside with this recipe.
● Collect postcards, souvenirs and pictures of vacation spots. Ask family members to send postcards as they vacation. Use these items in comprehension, memory, and expressive language tasks.
● Find old pictures of vacation and beach wear styles throughout the years. While you use these for language tasks, try playing some beach or summertime music from the past.
● Discuss the pros and cons of different vacations spots. What was the resident's favorite vacation? Did she have any vacation disasters? How have vacations changed over the years?
● Have the patients list all the places they have visited or vacationed at, and describe what they were like.
● Bring in travel magazines.
● Discuss what residents did as children when school was out for the summer. Did they go away with relatives, work on a farm, stay near home?
● Discuss the pros and cons of travelling for vacation, and of staying home. Ask if the patients think we take enough time for vacation and relaxation, or if we take too much. Brainstorm for ideas for budget and for lavish vacations, and create packing lists and travel itineraries.
All of these activities can serve as a basis for cognitive-linguistic goals and speech-language goals. Picnic activities can include swallowing goals.
I'm always on the lookout for a new therapy activity that will be interesting and fun, and can target several goals as well as be adaptable for different ability levels. I especially like it when I find a new activity through one of the patients. Recently, a patient asked me if I wanted to play Rummikube; we played the box version, but there is an online version here. This game seems most appropriate for patients who have progressed on cognitive-linguistic therapy and have goals for sequencing, memory, problem-solving, attention, and comprehension of complex directions and information.
In my initial therapy session using the game, the patient explained the game to me, and I played by just using the information she gave me without referring to the directions. This was a great activity to target her memory, error awareness and thought organization. I made several mistakes on purpose to see if she would catch them, and I asked her many detailed questions about the game rules. Switching roles and allowing her to be the teacher also gave her a boost of confidence when she was successful at giving directions and explaining rules. We also talked during the session about how games, puzzles and other activities keep the brain stimulated and involve most of the skills we have focused on therapy.
The game was easily finished in 30 minutes that day; however, the patient was quite familiar with the game. A different patient might require more time and explanation. We played until one of us was out of tiles, but if time does not allow for that, you could always declare whomever has the lowest points total when their tiles are added up at the end of the session as the winner.
This patient is going home with family when she is discharged, and we are targeting complex cognitive tasks to promote her independence. She is aware of her deficits, and wants to be challenged. We have done cognitive tasks on paper focused on scheduling, memory, and money management, but she appreciated activities that are more social and interactive in nature as well.
Many recent graduates are starting their first jobs over the summer, or will begin their professional careers in the fall. When I see graduation announcements and hear of graduates starting new jobs, I cannot help but think of everything I wish I had known about working in the "real world" before I started. Here is my advice to new graduates:
● Be flexible and open-minded. You will have to learn to follow new routines and work under conditions that you may not have experienced up to this point. You will meet and work closely with physical therapists, occupational therapists, nurses, CNAs, dietary managers, and other professionals. Listen to and learn from them.
● Be confident. As a student clinician, your clinical supervisor most likely was seen as the person in charge. Now, you are the expert. Explain what you know, and never forget that you have years of training. Act like a professional, and expect to be treated like one.
● Expect to be overwhelmed. You will most likely have to learn a billing and documentation system, company protocols for screening, evaluating and treatment, specific building rules and regulations, and state and federal regulations. You will learn all in time. Do not hesitate to ask for help; a good employer will expect a new graduate to have questions.
● Ask a lot of questions! Do not assume or guess for fear that you are bothering someone or that co-workers will not respect you as much.
● Take your breaks and your lunch breaks. Arrive on time and leave at a reasonable time. Do not fall into the trap of overworking yourself.
● Use your CFY supervisor whenever you need help. She is there to guide you.
● Keep a change of scrubs or clothes in your car. Trust me, you will almost certainly thank me one day for this advice.
● Remain focused on the quality of care that you provide, despite pressure to be productive on the job. Yes, you can do both.
● Keep learning! Stay up to date with research and treatment options. Avoid getting into the habit of relying solely on what you learned in school. I cringe when I hear professionals say things like "That's not what we learned in school!" or "In nursing school, we were told to always reorient confused patients." And when was that? Twenty years ago? Do not become that person.
● Keep up your hobbies and interests outside of work. A happy therapist is a good therapist!
● Have a sense of humor! Humor, compassion, knowledge, and a love for your work are your greatest tools. Caffeine also helps.
Indeed, the world of speech-language pathology and healthcare has changed so much since I began that now I take so much of what I have learned for granted. All of us were new clinicians once. Good luck out there!
How many times in your professional career have you heard a statement such as, "He's a hip fracture" or "She's a stroke"? I hear it a lot, and I have to admit I cringe every time, even though I realize that the intention is to convey information about the patient as quickly and succinctly as possible. I cringe because I see patients looked at as a diagnosis, not as a person.
Our patients are not just a diagnosis, or an age, or a behavior. The simple act of saying "She was admitted for rehab due to a heart attack" takes minimal effort, and puts the person first, not the diagnosis. It may seem like a small thing, and fairly inconsequential in the grand scheme of things, but I ask you to think again: how many times have you witnessed a colleague dismiss a patient's ability to follow directions and complete therapy tasks simply stating the patient's age ("He's 96, what do you expect?") or diagnosis ("She's a level 5 on the Global Deterioration Scale; she'll never remember what we teach.").
As professionals, we owe it to our patients and ourselves to look beyond labels and medical diagnoses, and get a complete, detailed history to examine the patient as a whole. Perhaps the patient did have a fall at home and is sent to rehabilitation post-surgery, but what else is evident? Has the patient's behaviors or communication changed? Was the family starting to be concerned about the patient's memory and safety awareness prior to the fall? If we sum up a patient with a word or a number, we could very well miss an opportunity to treat the patient, particularly patients in the early stages of dementia and patients with mild communication deficits. These patients can often cover up their difficulties until they do have a fall, have surgery which involves anesthesia, or have a medical decline due to illness. Once they cannot focus on hiding the memory and cognitive deficits, the skilled clinician can often spot deficits that can be addressed through therapy and compensatory strategies.
Nursing assistants are often adept at noticing the little errors a patient makes in ADLs and social interactions. We also have to bear in mind that therapy assistants may not have the extensive training and experience to identify a communication or cognitive disorder versus what is considered normal aging. And, finally, we cannot get complacent and trust that the nurse or other therapist who has seen the patient before we evaluate has the whole story behind that patient; it is important to screen all patients carefully to determine if our services would be necessary and beneficial.
In the end, the patient with aphasia and apraxic speech and motor patterns went home to his previous setting. The patient was very anxious to go back to his former living arrangements, with familiar faces and his own belongings and schedule. He left with a walker, which had used previously, and was eating whatever he wanted and conversing with familiar people, with some episodes of word-finding difficulties and apraxic speech patterns. He was what he called "forgetful" and would rehearse new information over and over, which made some of the staff believe he was having more cognitive issues than he really was. He continued to require cues for memory and sequencing, and the team provided a great deal of education to family and caregivers so that they would would understand how we cues and assisted him and why.
One of my main concerns was that the family and other caregivers allow him to maintain his independence; it not uncommon to see family, friends, and paid helpers do even the most simple tasks for a patient out of love and concern. They often state that they want to pamper or take of a patient, because that patient has taken care of others and worked hard over the years. It is a very understandable behavior, but it can be problematic. Patients who are not allowed to try and fail, to make errors and correct them, and to get a message out or task done in their time and in their own way can begin to depend on caregivers too much. Simple tasks, like planning meals, sorting mail, folding clothes, choosing outfits, and making daily decisions are gradually taken over by caregivers who mean well, but leave the patient with reduced feelings of being a responsible adult who has some control over his or her life. Patients may become resentful, angry, sad, depressed, or begin to develop learned helplessness. The patient may begin to feel that there is nothing he or she can do independently, and so the caregivers and family will take on even more of the patient's usual tasks and activities.
Completing even the simplest of activities is important to foster feelings of self-worth and to keep the brain active. Patients must be expected to try to communicate, use memory aids, and complete simple tasks given only the minimum cues they require and with the expectation that mistakes will be made. Caregivers often get a sense of fulfillment from being a helper, but the real goals should be the patient's independence and participation and whatever level is appropriate.
Continuing on with the analysis of a complex patient with underlying dementia:
After a week or so of therapy, the therapy team began to identify dementia behaviors versus symptoms that were consistent with apraxia and aphasia. When was the patient unable to complete a task due to memory and orientation deficits versus possible sequencing and motor planning deficits? When did the patient become frustrated and give up? What part did mildly decreased speech intelligibility play in how staff and caregivers perceived this patient? What other factors came into play, including the patient's anxiety over being in a new and unfamiliar environment, and his desire to be able to walk with his walker and return to his assisted living facility, where he had friends and the staff knew him well?
As the speech-language pathologist, I took on communication, orientation, and memory skills, which the occupational therapists and physical therapists reinforced based on what I reported. The patient was actually oriented to the building within several sessions, but became anxious on his own and would let staff push him back to his room. We educated the staff about the importance of letting the patient navigate the hall to and from his room and the dining and common areas, which was important cognitively, emotionally, and physically to the patient. We realized that some of the anxiety and inability to use the wheelchair resulted from the patient's fear of having to remain in a wheelchair versus using a walker again. Consistent reassurance and education helped the patient to understand the progression of therapy and the goals. We realized that the patient took us very literally and had a poor concept of the progression of therapy; whatever we said, he expected it to happen that day or to be what would happen forever. Again, frequent review of progress and expectations helped the patient understand.
I suspected some neurogenic stuttering, and educated the staff and family on strategies to cope and support the patient. The patient became more relaxed and communicated more effectively when people learned how to listen without interrupting or speaking for him.
Next week: where was the patient at the end of therapy? Hint: It's a happy ending!
Is it dementia? Is it aphasia? Is it apraxia? Is it dysarthria? A combination of two or more?
Or is it all of the above?
I ask myself that question frequently, and it can take a careful clinical evaluation and observation during therapy to determine what is truly the most specific cause of communication problems. When patients arrive and their History and Physical (H&P) reports a diagnosis of dementia, many professional assume that communication deficits are a result of cognitive deficits, and they very well might be. Let us suppose that a patient went to the hospital with an episode of altered mental status (AMS) and a urinary tract infection (UTI). The patient also has a diagnosis of dementia and of transient ischemic attacks (TIAs). The hospital noted that the patient is a very poor historian, does not answer questions, and is oriented to person only. The patient is admitted to the SNF, and nursing staff assume that all of the communication deficits are related to cognitive deficits and that the patient simply cannot understand questions and directions.
A careful clinical exam, including components such as Brief Cognitive Rating Scale (BCRS), Global Deterioration Scale (GDS), Allen Cognitive Levels, the Ross Information Processing Assessment,- Geriatric (RIPA-G) and a speech and language sample should reveal much more about the patient's ability to communicate and that is our job: to get to the specifics of the communication disorder, treat the patient, and educate the patient and the staff so that the patient can communicate and participate in daily activities.
Patients with apraxia might be so slow to respond that the untrained person might assume that they just do not know the answer. Patients with aphasia might say it is November when it is May. Patients with dysarthria may have articulation and intelligibility deficits that result in either the patient giving up on responding, or the listener abandoning questions because they do not understand the problem. Speech and language disorders are often misinterpreted as cognitive disorders.
The patient at first did not answer any orientation questions except for questions about himself and his family. He was very slow to respond and had difficulty initiating replies to direct questions, while he often blinked his eyes rapidly and made mouth movements when asked a question. After the BCRS and GDS were completed, and the patient participated in orientation tasks during the initial therapy sessions, the patient was able to recall place, time, and situation during conversational tasks. He spontaneously announced that his birthday was in one week, and that he had been a school teacher for 40 years.
The following day, he recognized the therapist on sight, but did not recall her name. He was oriented to place, time, and situation with just a few cues, and was attempting to navigate the building in a wheelchair, which he had never used before. Each time he started to go somewhere, he required reminders of how to use the wheelchair and often stopped and looked confused. Staff assumed he was lost, and began wheeling him back to his room or to the common area whenever he stopped in the hallway. In open-ended questions, responses were inconsistent and the patient would answer several questions correctly, and then not respond to a question he had known before. The CNAs began to do almost everything for him, because they thought he is too confused to complete ADLs on his own.
What would you suspect might be happening with this patient? What would you do next?
I discovered a few weeks back that my facility's kitchen manager provides a menu of the upcoming week's meals, along with alternates, for residents who would like to plan ahead. Like all of us, residents have food likes and dislikes, and the weekly menu allows them to have some control over what they are served. At the least, it allows them to avoid liver or brussels sprouts, if those are their "thing."
I have found that getting a copy of the menu on Friday and sitting down with a patient over it is a perfect way to target many therapy goals, to learn more about the patient, and to get the patient talking about something that many people have strong opinions about. Patients have opened up over the menu, whether it's because they hate the food or think it's just fine, or whether a certain meal brings up memories of cooking for family, many people enjoy talking about food. Some patients do not have much of an appetite, and discussing the menu ahead of time may allow them to pick out which foods appeal to them more, and possibly lead to better intake and reduced reliance on snacks or supplements.
When using the menu, I often start out focused on dysphagia goals. Reading the menu might show me if the patient can identify appropriate foods and textures, or is she is aware of her dietary restrictions. I can plan ahead for upcoming treatments sessions and develop compensatory strategies based upon what the patient is stating he would like to eat. I can also involve family in the session by taking this opportunity to teach them about which foods fall naturally within a certain diet texture category and which may need to be modified, as well as by discussing compensatory strategies, safety strategies, and so on.
Discussing the menu presents me with all sorts of language and cognitive tasks, including:
- decision making, safety awareness, and problem solving (what to do if you get the wrong tray, why certain foods are restricted, etc.)
- formulating and expressing opinions
- verbal sequencing - ask patients how they make a certain dish
- word recall
- orientation (if the menu is in a calendar format)
- reading comprehension
- following directions and/attention (have the patient circle or highlight all of his likes)
I find that using the menu this way also gives the patient a sense of control and helps me to develop a rapport with him. There is nothing like bonding over food!
Throughout the day, we often have to change our schedule on a moment's notice for many reasons: patients have to take a shower, leave for an appointment, finish a meal, or just have visitors on their way out or are finishing an important call. This can mean adjusting the schedule to see the next patient on the fly, and staying flexible with therapy tasks. We cannot carry every therapy material needed on our person, and running back and forth to an office is not always feasible; that is why I like to have what I call "pocket therapy" ready to go.
Pocket therapy is just what it sounds like: whatever materials I have that will fit into the pockets of a scrub top or lab coat, and that I can pull out on a moment's notice in order to avoid scrambling to find materials to address a patient's goals. The items must also be versatile enough to target multiple goals.
On any given day, you might find me walking through the building with these items on me:
● a deck of playing cards, to target sorting, sequencing, giving and following directions, describing, and memory
● a small notepad or a pack of index cards, for writing down safety strategies, recall of orientation and personal information, reading tasks, sequencing words into sentences, functional writing.
● a dry erase marker, to use with papers and worksheets that I keep on my clipboard. These worksheets are in plastic page protectors, and can be used over and over
● hard candy, mints, sugar free candy, or gum for swallowing exercises (with appropriate patients)
● change for counting
● extra pens for the patient to use in written tasks
● a deck of flashcards for naming and decsribing
I am sure that many, many more items can be added to this list, and a small tote would definitely hold a few items on a daily basis. Of course, we all try to organize ourselves at the beginning of the day so that we do not find ourselves lacking in therapy ideas or materials, but these go-to items can really fill in in a pinch. If you have your own "pocket therapy" ideas, please share them in the comments section.
Speech therapists ask a lot of questions; it's part of the nature of our job. There is a fine balance between asking questions to target therapy goals, and making the patient feel like she is being quizzed. I cannot count the times that I have been asked why I asked so many questions or why I needed to know these things about the patient. Let's face it, not many people look forward to seeing the person who just asks redundant questions, or makes them name countless lists of words and recall pointless facts. It gets worse when patients know that they are not able to respond correctly, have trouble recalling words and information, or cannot put their thoughts into a coherent or intelligible response.
When patients get frustrated, they often act out in order to try to avoid the task. They suddenly have headaches, or want a nap, or need to reschedule. Eventually, they might start to refuse therapy altogether, and for good reason: they do not see the benefit or the purpose of all of the questions.
In order to increase the patient's willingness to complete verbal tasks, try to:
1. Carefully assess the patient's cognitive level via the Brief Cognitive Rating Scale, Global Deterioration Scale, Allen Cognitive Levels, Ross Information Processing Assessment- Geriatric, etc.. Use your clinical judgement to decide if lengthy or complex verbal tasks are even appropriate.
2. Be aware of any hearing loss, and keep in mind that hearing loss is not always reported in the chart at the time of admission. Many patients will nod and smile at questions that they do not hear clearly, and seem confused or disoriented.
3. Explain the purpose of each task to the patient at a level that he can understand.
4. Allow a few minutes for the patient to "warm up" at the beginning of the therapy session instead of jumping right into question and answer tasks. Let the patient tell you a little about her day or her family, and ask you some questions too.
5. Try written tasks as appropriate if the patient seems to become annoyed with constant verbal questions.
6. Make sure that all of your activities are appropriate to the patient's level. Adjust the complexity according to the patient's ability to respond correctly, and avoid letting the patient get frustrated or bored.
7. Do not simply read lists of questions from workbooks every day. Try to find out what the patient's interests are and develop questions around them.
8. Do more hands on, functional tasks that do not involve talking.
9. Bring an activity, such as a card game, organizational task, or snack to make, so that the spoken language tasks can be done in a more natural and cooperative setting. This might help the patient to relax and feel that therapy is more conversational and less confrontational.
10. Do not use the same questions and topics in every session. Alternate verbal and nonverbal tasks.
11. Enlist other therapists to bring a patient into conversational tasks. Each therapist can work only with their own patient, but the patients may feel more relaxed, and less as if they are being put on the spot.
12. Listen to your patient when she voices frustration or is tired of specific verbal activity, and let her know that you understand her frustration. Offer to giver her a break periodically.
13. Let the patient ask you questions.
14. Give consistent feedback and allow discussion of questions and answers. Don't make the patient feel that all you are doing is marking down the number of right and wrong answers.
15. Invite family members to join in, if the patient is willing and responds well to having observers in therapy, and let them ask and answer questions as well.
The topic of appropriate treatment materials comes up from time to time in every facility, for many reasons. Sometimes regional and district supervisors are instructed to inform therapists (and not only the speech therapists, but occupational and physical therapists as well) to quit using any materials that look liked games or toys. Managers may notice a tendency for the same materials and activities to be used over and over. Patients might voice opinions about which activities they prefer, and which activities they do not enjoy.
My personal opinion is that if games, activities, and therapy materials are age appropriate and beneficial to the patient, anything goes. I have memory games that look similar to the games we play with children; however, patients match cards by attributes and categories, rather than finding two matching pictures. The game can be quite challenging, and it brings up all sorts of opportunities for conversation and discussion. The pictures are not childish, and it can be modified for many levels of ability. I have also made my own "grown up" coloring pages that involve following specific directions, which have helped me to target memory, sequencing, problem solving, attention and so on during an activity that many adults truly enjoy. Jigsaw puzzles are a great activity as well.
So why do some activities get labeled as "kid stuff" and therefore inappropriate?
● The activities themselves are beneficial, but the design is for kids. This might include puzzles, matching games, flashcards, coloring pages or coloring books with cartoon themes, early education themes, or juvenile artwork. You can find games, puzzles, and coloring pages for adults if you branch out from your local dollar store. Mazes are another great activity.
● The patients are asked to do the same few activities over and over. Repetition can be beneficial, but if it looks like the entire therapy department is sitting around doing puzzles with patients all day, that is a problem! Thoroughly document why an activity is repeated or continued, and how repeating the activity benefited the patient. Communicate with other therapists so that you know if a patient has done the same or a similar activity during another session.
● The patient or the family feel that the activities are too juvenile. Listen and observe your patients. If they complain about doing the same activities over and over, or say that the activity is for kids, find something else to do. Know your patient's background and ask them their preferences.
● The therapist did not document or explain to the patient the purpose of the activity. The patient should always know why they are doing a particular activity, be allowed to give input into activities, and the documentation should always support why a particular task is being done. Document the patient's reaction to the task, cues required, goals the task addressed, the patient's accuracy, and any education you gave the patient regarding the tasks purpose.
● The therapist is not interacting with the patient by cueing, assisting, and evaluating skills throughout the session. Watching a patient complete a worksheet or a puzzle on their own is not skilled therapy. Yes, there are times when observing or demonstrating without a great deal of verbal directions or explanation is important, such as when using Montessori-based activities with patients with dementia, but there must be some interaction and feedback that is skilled. Otherwise, CNAs and activities staff could be supervising the activity.
Do patients who are NPO or who receive modified diets sneak foods and beverages anyway? Certainly. Many times this is because they want to exert some control over their condition, but other times it is due to a lack of insight or education regarding the very real risks involved with resuming PO intake or upgrading diets. At times, patients and families are in denial about deficits. Families and friends often feel sorry for patients in hospitals and nursing homes, and will bring them food and drink out of compassion and a desire to help.
If patients and families remain uncooperative, I proceed with more education, informing them that:
1. They are placing themselves or their loved one at serious risk, and I describe the specific risks.
2. There is a plan in place to resume PO intake or upgrade the diet as appropriate.
3. If the patient aspirates or chokes and the staff or SLP are not aware that the patient is eating certain foods outside of therapy, they might assume that it was due to therapeutic trials, and this may delay the progression of diet upgrades.
4. The patient and the family do have the right to refuse recommendations and interventions, and I can refer them to the MD or director of nursing so that they can discuss their options.
If patients and family voice or demonstrate that they will not comply with the recommendations of the SLP, the patient may have to be discharged from dysphagia therapy. I always stress that this decision is not a punitive measure, but that the SLP cannot effectively address the patient's deficits and make good clinical decisions if the patient and family are not willing to support the plan of care and MD orders.
Many facilities will provide a dietary waiver for patients and families who choose not to comply with recommendations, safety strategies, or doctor's orders for diet textures and swallow protocol. These waivers serve to document that the patient and/or family have been educated about the risks and have been taught any swallow strategies and safety strategies. There is always a debate over if such waivers are legally binding documents. Once a waiver is signed, I often must discharge the patient from skilled therapy and note that the patient and/ or family refused the recommended diet or refused to comply with the plan of care.