Environmental Engagement

It was so fun today to see a patient sitting outside greeting visitors.. waving and smiling... eating in the diningroom etc.  The same patient that used to stay in her room and scream at people when they entered the room and tried to help her with anything.  It's called environmental engagement and it's like turning on someone's life light switch.    You do this by spoiling the patient and very slowly helping them interact with his/her environment.  It usually involves a lot of sensory approaches.  Finding out which sensory things attract the patient and which things the patient avoids.  Helping him or her be able to tolerate those sensory items that cause him/her anxiety... and giving him/her the sensory stimuli that they crave...that's a skilled intervention and an art.  We'll be exploring more sensory interventions in future blog entries.  

Watch for Symptoms of Apnea

Apnea - a common problem for patients with dementia.  Apnea is defined as a sleep disorder involving abnormal pauses in the breathing pattern.  This causes a drop in oxygen levels and can damage critical organs such as the heart and brain.  Symptoms include sleepiness during the day, complaints of a dry mouth/throat, morning headache, difficulty staying asleep at night (insomnia), loud snoring, shortness of breath that wakes you from sleep, and general pain throughout body.  Putting a patient who has apnea on nighttime oxygen can make sleep apnea even worse.  Apnea can also progress dementia very quickly and also cause something of a temporary "delirium" on top of the dementia that can clear if the apnea is treated.  Ask your physician about testing for sleep apnea if you/loved one/patient have some or all of the above symptoms.  Also some behaviors may disappear once the apnea is treated - such as aggression, withdrawal, and/or lack of appetite.

"I'm not hungry"

This is a common statement among people with dementia.  They stop eating gradually until they reach a point where their body just isn't hungry anymore and just the sight/smell of food makes them sick.  This is a sensory problem and must be approached as such.  The last "taste" group that an individual eats prior to stopping eating completely are sweets.  So to stimulate the appetite - use sweets frequently throughout the day in small doses.  Sometimes I have to start with a little bit of soda in a tiny plastic med cup.  Encourage them to drink this little bit every hour or so.  Sometimes they eat a 1/2 tsp of ice cream frequently through the day.. sometimes it's graham crackers...sometimes it's chocolate...sometimes it's fruit or yogurt.  Start small and gradually build up the amount they eat/drink at a time and/or the frequency of their intake.  These items will "drive" the patient's appetite.  I use essential oil placed on cotton balls placed in the patient's pocket or near them...oils that stimulate appetite such as peppermint or citrus smells.  Also great is boiling apple cider in a small saucepan nearby.  Bake bread in a breadmaker..anything to use smell as an appetite stim.  Sometimes it's a visual processing problem - so I put a tablespoon of food in the center of an over-sized bright colored plate.  That's their meal.  The next meal (if they ate everything for the prior meal) I increase the amount in the center of the plate...gradually.  Until their mind's eye accepts a full plate as a meal.  Appetite re-stim is so easy and sooo rewarding to watch your patient become stronger and able to participate in his/her other therapies or activities of daily living.

Sleeping Beauty

I love it when I hear a nurse wake up a patient to give him/her their sleeping pill :)  Ironic isn't it?  Why do so many people have difficulty sleeping not only in the hospital, but especially in nursing homes, relative homes, and rehab centers.  How many of us like to sleep with a little bit of light?  How many have to have it completely dark?  Who likes to sleep under heavy blankets and who can't handle anything more than a sheet?  How many can't stand any "pilling" on their sheets?  How many need a certain material in their sheets?  Who among us must sleep with a TV, radio, or a fan?  So many variations not only with textures and sounds, but also with smells and the right kind of mattress.  And then we wonder why patients in our facilities are so tired and have difficulty sleeping.  Pay attention to these things from their home and try to re-create as many as possible in his/her new room.  This is a skilled therapy service and a necessary one.  Without sleep - risks involve everything from falls to malnutrition and skin breakdown.

Alert Systems

There are many times that we send patients home alone and we don't feel confident that they'll be safe.  There are alert systems on the market for instance from Life Alert that automatic alert devices.  The patient/person doesn't even have to push the alert button... the system senses when he/she falls and then a representative asks through the monitor if the patient is ok.  If the patient doesn't answer then assistance is sent to his/her home automatically.  The best support system is family/friends or hired caregivers to help supervise a person with dementia at home.  But when this support system is not available - these alert systems are very helpful to assist with a person's independence and safety.

"They Keep Taking My Things"

This is a common accusation from people with dementia - even though most of the time it stems from forgetfulness about where he/she put the item.  I like to help the patient establish a procedural ritual with those items.  That means that I want the habit of putting the item in it's "home" to become automatic for the patient.  I have to make the "home" colorful because people with dementia need 4x as much color contrast as the average person so neon colors work great.  Common items are dentures, glasses, hearing aides, canes, purses, wallets, and money.  Create this colorful home for the item and practice with the patient over and over placing the item in it's new "home' ...I like to tell him/her that we're going to "hide" the item (if they are really paranoid about theft).  It takes 3 weeks to establish a new habit with a patient so plan on spending a few weeks establishing this new ritual.  You can watch for progress as they need less and less help to find the "home", put their item away, and then retrieve it again.  Also watch the patient become less and less anxious about someone taking the item.

Rescue Strategy Continued

Had a patient today that was convinced that his walker wasn't "his" walker that he usually uses (and it was his walker).  So the therapist agreed with him and said "I can't believe someone would borrow your walker without asking!" and then took his walker away with her.  She came back about half an hour later and told him that she had located his walker and she even cleaned it up for him.  He was sooooo happy!  And it was the exact same walker.  That's all it took and he was happy/relaxed just moving on with his day.  Some things that can explode into huge issues... you can stop them before they become a real problem with a little bit of  behavioral intervention.

Rescue Version 3

Another form of the rescue strategy is to rescue the patient from his/her "perceived" situation.  For instance;  had a patient once that was convinced a man was in her room and she wouldn't return to her room for any reason.  Now we could've used reality orientation and told her that there was no-one there and she was hallucinating etc etc and it would only end in making the patient feel crazy and that she can't trust anyone because they don't believe her.  A better way is the rescue strategy - tell the patient you are going to clear her room for her and then do it.  Enter her room and then return to her and let her know that you cleared her room for her.  And if he comes back that she needs to let someone know immediately and we'll have him thrown out.  She'll feel confident that people believe her and this particular patient returned to her room for a good nights sleep.  I had another patient that was convinced the kitchen was trying to poison her.  So I had the kitchen pack up her lunch in a brown bag and told her I brought it just for her so I could make sure no-one tampered with it.  I could've told her that no-one was trying to poison her blah blah blah...and it wouldn't have helped her anxiety.  This way I gave her an "untampered with lunch" and she could eat with confidence.  Then I introduced her to someone in the kitchen that part of my "club" and she would supervise her food when I couldn't be there.  Then I introduced her to another person that would also keep a "look out".  And slowly we built her confidence for all of the kitchen workers.  She ate well and was able to complete her therapy because she had the food intake she needed to get stronger.

Aggression

We had a patient yesterday that was agitated and then escalated to the point that he required the police to intervene and rescue a nurse (patient had her in a choke hold).  This can be avoided if the agitation is identified and effectively dealt with before it escalates to the point of no return.  The first thing that happens when a patient starts yelling and showing his/her fists is a bunch of people like to gather around to help.  Unfortunately this is the worst scenario for the patient because it now looks like a mob (all against the patient) and makes the situation even worse.  It creates more noise and an over-stimulating event.  The patient feels more threatened then ever and the patient loses.  A better scenario is to try to re-direct the patient into a calm environment like his/her room with just a 1-on-1 conversation.  Speaking very calm and as little as possible.... using slow deliberate movements and avoid direct eye contact as this can also escalate anxiety/anger.  Try to touch the patient as little as possible until he/she calms down.  Music is often helpful (something calming) or certain scents like peppermint, cinnamon, lavender, or vanilla are also very effective for calming effects.  You can use a stimulation such as a taste like a peppermint candy or butterscotch.  Giving a heavy blanket or pillow for him/her to hold on to is also calming.  The key is to catch the behavior before it escalates to the point of yelling...watch the person for aggressive talk, aggressive singing, frantic eye movements, shakiness, crying, or aggressive wandering (seeking a way out).  Intervene at the first signs and you'll have much better luck with your calming activities.

Security

Feeling insecure, dizzy, etc is common among rehab patients especially those with dementia.  Something as simple as placing pillows around them in bed or having them hold on to a pillow and placing 2 more at their sides in the wheelchair can also help them feel more secure.  I often have the patient squeeze a pillow tight against their abdomen when beginning transfer training to help them feel safe..before we start training on pushing up and grabbing on to bars etc.  When the patient shows symptoms like fear when standing or avoids standing completely...  that's when these interventions work wonders.  Sometimes the goal is just to get the patient to stand without symptoms of dizziness or fear before you can work on other goals.

Rescue - Version 2

A neat example of another version of the rescue strategy was used today in our department and it works like a charm for Allen Level 4 patients.  The patient entered the therapy gym and had to wait for the therapist (who was finishing her note she was working on in an adjacent office).  When the therapist approached the patient (after a 10 minutes wait - the rehab tech had been entertaining her while she waited), the patient became angry and tried to hit the therapist.  What happened here?  A normally compliant patient became angry over something so trivial.  But this is an Allen Level 4 patient... a patient who has the cognitive level that wants to be the #1 priority regardless of your schedule.  If they find out you're going to treat another patient before him/her then they will stop cooperating with you because they sense that they are no longer your #1 priority.  So when this therapist asked me what she should do... I advised her to go to the patient (who was back in her room) and tell her "I just found out how long you were waiting for me in the therapy gym and I am so sorry... my staff knows how important you are and they are supposed to alert me the minute you enter the gym... again I apologize for your wait".  The therapist returned to the gym with the patient after having used this approach and the patient completed all therapy minutes.   I thought - what a great example of another version of the rescue strategy so thought I'd share it with you today.

Rescue Me

Allen Level 4 patients can be very tough customers.  Not believing anything is wrong with them and anything that is wrong is everyone else's fault...makes for a patient that likes to refuse therapy.  Establish rapport to treat a 4 :)  One technique that helps when you get refused by a Level 4 is the Rescue Technique.  The therapist who gets refused or told to "walk back out that door" needs to try to approach the patient again and while the patient is refusing...have a 2nd therapist walk in and say something like "I can't believe you're in here again, didn't you tell me she didn't want to exercise today?  Leave her alone; I'll bet you've never even been in a hospital before.. you don't know what she's been through"  The 2nd therapist now takes over the therapy and rapport will have already been established in that one little interaction.  Rescue strategy works almost everytime.  It's documented as Rescue approach initiated to elicit patient participation in therapy tasks.

Verbal Overload

Allen Level 4 patients become anxious/angry when someone talks too much around them... gives them too many directions all at once... too much noise around them.... information is too complicated..... or when more than one person is trying to talk at the same time. Patients at this level become easily overwhelmed with auditory "clutter" and will refuse to participate... go back to his/her room... or lash out in anger.

Don't Let a Level 4 Fool You!!

I can't tell you how many therapists have told me that an Allen Level 4 patient was safe to go home by his/herself because the patient has answered every question correctly. As a therapist in a sub-acute rehab facility or as a caregiver/family member assisting someone with early dementia; it is vital that you understand the difference between cognition and executive functions. WATCH what the patient does; don't test by asking questions. They will pass the Mini-Mental and every other test you throw at them. Neurologists and physicians will say that these patients are fine because they test using questions. Watch for impulsiveness, hallucinations, excessive blaming, paranoia, unusual anxiety, persistent loss of items, getting lost when driving in familiar areas, asking "What do I do now?" after every step of a task, visual changes coupled with body awareness decrease which results in him/her bumping into doorways/edges of furniture/people frequently, personality changes, unusual actions to fix problems (not something they would normally do to correct a problem - very unusual fixes that don't make sense), have difficulty talking and working on a task at the same time, dangerous reaching and bending without regard for safety, look at family members to answer questions requiring complex memory, and unable to solve complex problems. Although this level of mental ability appears normal when answering your test questions; this is the same person that will go home and burn to death in his/her kitchen because they can't react fast enough to an emergency situation.... this is the same person who will bleed to death in their home because they don't recognize an emergency.... and the same person that although he/she will tell you how they should take their medicine - frequently this level takes their medications wrong even when they are set up for them in advance... it is this level more than any other that falls due to poor safety judgements/impulsive movements.

Allen Level 4

I have therapists ask me all the time why so many of their SNF patients have dementia. That's easy. Dementia is the number one reason people are admitted to sub-acute rehab units so it stands to reason that a majority of people will have some form of dementia. The Allen Cognitive Levels go from 1 (end stage before death) to 6 (Normal). Levels 5 and 6 are fairly normal and can live alone without difficulty. But when the cognitive ability dips down to a Level 4, then major problems begin to interfere with a person's ability to be safe without help. You'll recognize someone in this early stage of dementia because they begin to talk A LOT. In fact, it's difficult to get a word in edgewise. Patients at this level blame everyone else for their difficulties or failures. Often he/she have personality changes and have a very difficult time understanding reason/ logic especially when it applies to his/her health/safety. This level often will answer all questions correctly, yet they do things impulsively/unsafely. This is the type of patient that will tell you he/she has to use their walker or they will fall down and break their hip...... yet when you leave the room he/she gets up and goes to the bathroom without the walker. It's because their cognition is fine (WHAT they know), but his/her executive functions (WHAT THEY DO with what they know) is impaired. Often these patients carry their walker down the hall and lift it up and over obstacles instead of navigating safely around them. To keep walkers on the floor put weights on the walker and then gradually take the heavy weight away until the patient is using the walker appropriately without the help of weights. These patients require 4x as much color contrast as the normal person and they use what they see. Often the front of his/her hair will be fixed nicely, but the back will be unkept/stick up. So since this patient uses what they see... to get a patient like this to use his/her walker... color it up!! Tape it up with colorful tape...spray paint it a fluorescent color etc. Want this patient to use the brakes on the wheelchair? Color them up. Always look at things from the patient's perspective.... color helps him/her pay attention to the borders of furniture like sofas or chairs or beds. I recommend to families to throw a colorful bedspread on the bed... a colorful throw on the sofa or chair so the patient doesn't miss the furniture when they try to sit down and fall. Color can be used all over their house to help this patient be more independent and keep him/her off the floor.

Allen Cognitive Levels

Why do I like to use Allen Cognitive Levels (ACL) to track the abilities of dementia patients? Because other scales such as the Global Deterioration Scale only list skills that the patient has already lost. As a therapist, I can't do anything about the abilities that have been lost. I want to know what abilities are left and which skills are most at risk of being lost in the near future. My role as a therapist is identifying these "at risk" abilities and designing a program that will reinforce these skills to delay the progression of the disease. In later posts we will be exploring in detail this process.

Dementia vs Depression

These two diagnoses can occur together. They can also be misdiagnosed for each other. Depression presents as low energy, poor appetite, generalized pain, may have accompanying anxiety, and are aware of memory difficulties. Dementia patients have a lot of energy, but they say one thing and do another. They may describe to you what they are supp0sed to do regarding safety, but then do the complete opposite. There's a huge difference between their cognition (WHAT they know) and executive functions (What they do with what they know). I'll be describing executive functions in future blog posts.

Dementia vs Normal Aging

Ever been asked what the difference is between normal aging and dementia? Mental changes that occur with normal aging involve the forgetting of details. One might forget someone's name or something that was served at a birthday party etc. Mental changes that occur with dementia involve forgetting entire events. One might forget that he/she went to the birthday party completely. Personality changes occur with early dementia and navigational skills become impaired (finding his/her way to and from the store etc).

Understanding Levels of Dementia

The progression of dementia can be explained when visualized like a flight of steps leading to the basement. Our duty as dementia rehab specialists or even more importantly a close family member is to keep the patient on their current step as long as possible by stimulating abilities he/ she still uses. Is this possible? Yes it is. It is not possible to cure the disease, but it is possible to dramatically slow it down. Step #6: Normal Abilities (you or I on a good day :) Step #5: Mild Impairments - can be due to illness/normal aging. This level forgets details; forgets where they parked their car frequently; forgets names of acquaintances; house isn't as neat as it used to be; forget ingredients in familiar recipes. Step #4: The Talkers - The longer a person is on this step... the more they talk! Talk and talk and talk and talk - you can barely get a word in the conversation. When he/she is on this step for awhile, they start using primarily those things that catch his/her attention (bright colors or things they see in a mirror). Often fix the front of his/her hair, but not the back...often will tell you they must use their walker, but then they don't. A big difference between what he/she tells you they need to do and what they actually do. Step #3: The Walkers - Although he/she begins talking significantly less, unfortunately all kinds of behaviors begin. Things like yelling, pinching, spitting, hitting, aimless walking, and the worst behavior of all (at least the most dangerous for the patient) is withdrawal (often he/she sit with his/her eyes closed, but he/she isn't sleeping). Eating often declines in this stage. Step #2: The Feelers - He/she speaks in 1-2 word phrases and usually only when spoken to first. In this stage the patient does whatever "feels good"...they seek circumstances that make them feel comfy. Step #1: The Sleeper - He/she interacts very little with their environment. He/she gives eye contact when spoken to and may reach for shiny/bright objects.

The important thing to remember with all of these steps is the behaviors, appetite decline, etc are treatable. I can help you figure out things to do with him/her to help them feel safe, be healthy, and most importantly delay the progression of the disease. Ask me questions on this blog and let's share our stories.

Introduction

I am a Speech-Language Pathologist with 20 years of experience and currently work for an amazing company: Transitions Rehab out of Tampa, FL. I’ve been a National Director (Garden Terrace Centers of Excellence for Dementia Research/Rehab), Regional Director, Facility Rehab Director, Program Development Consultant and Continuing Education Provider. I’ve written numerous continuing education courses for all disciplines in sub-acute rehab. Have specialized in Sensory Disorders/Fall Prevention (adults), Dementia Rehab, Behavioral Modification, Montessori Techniques (adults), Oral Motor Therapy, and Soft Tissue Mobilization. I’m certified in Vital Stim Dysphagia Treatment and the Allen Cognitive Levels. Not only do I have experience rendering and teaching therapy techniques for Patients suffering with Dementia, but also took care of my Mother (suffering with Binswanger's Dementia) for many years in our home so I understand the challenges of caring for a loved one with Dementia.