Author: Kerry

“I’m noticing a change in Renee.” These were the words from the lips of a capable in-home care partner (Jackie) when she was speaking with one of our dementia coaches about her client’s progress. Her client (Renee) is a wonderful lady, who is in the advanced stage of frontal-temporal dementia (FTD) and was manifesting very challenging behaviors that are often common during this stage.

For a moment, I was caught up in the excitement of how we are improving a person with dementia. Then, I was quickly brought back to reality, knowing that people with dementia do not improve in their condition.  Alzheimer’s and related dementias (in this case FTD) progress in severity and there is no cure.

The reality of this “change” was not in Renee, but in Jackie. Her approach and the consistent use of effective strategies of care was changing Renee’s reaction to the care she was receiving. Renee’s quality of life was improving, but not the disease. This may seem to you to be semantics, but it is not. Renee’s condition will never change, but the symptoms can be managed effectively. When this happens, it looks like improvement. However, it is not a reversal of the disease but more an improvement in symptomatic outcomes.

So, what was the specific change in Renee and how was it accomplished? Renee was verbally and physically abusive in response to the efforts of caregivers. She was resistant to most care as well as walking and eating. With the help of our dementia Coach, Donna Sangi-Vallario, Jackie began to develop a new approach in communicating with Renee based on our Interactive Dementia Model (IDM).

Essentially, this model encourages the care partner to employ eye contact, appropriate body alignment, identification, frontal approach, validation of feelings, and several other strategies of care associated with IDM.

As I’m sure you realize by now, the primary change agent was Jackie. Like most of us, Jackie used strategies of care based on her understanding of life and how things “should be.” This is the mistake we all make in caring for someone with cognitive impairment. We ty to establish an environment according to our frame of reference. Using this approach in caring for someone diagnosed with dementia is the primary cause of problematic behaviors.

We need to step back and use the tools available to us. We get frustrated when the person is not responding to our definition of rationality. And, of course, anyone not responding to our conception of rationality is automatically irrational.

For example, a young child of 4 or 5 years of age would try to eat a quart of ice cream before dinner and not think anything wrong with this. Adults, of course, would be appalled at the thought. So, when the child exclaims, “why can’t I?” we immediately turn to what we know is correct and appropriate behavior and are able to give rational reasons for not engaging in the behavior. The child will obey you but will likely be disappointed. For the child, it makes all the sense in the world to eat a large bowl of ice cream, at any time.

The child does not yet have a developed sense of rationality like an adult. Nonetheless, the child is a rational human being. It is the job of the parent to help the child develop mature rationale. This can be a long and arduous task.

However, a person with dementia already has a mature rational mind, even though it may appear he/she does not. So, we may attempt to help them develop or re-develop this status of rationale. This will not work because the cause of challenging behaviors in not a symptom of irrationality. The person with dementia has every bit as much rationality as you and me, perhaps more given their longevity of life. The problem is identifying the correct frame of reference. The person with dementia has a different frame of reference than the one you think she/he should have. We need, as care partners, to discover the person’s frame of reference and approach accordingly.

While you may have clinical evidence of the person’s state of dementia, the person with dementia rejects such a proposition, especially those who are mid to late stage. When you change your approach to accommodate the person’s frame of reference you will begin to see a “change” as Jackie experienced. It looks like recovery but it really is just harmony of mindset.

We have witnessed incredible changes in symptomatic outcomes over the years. We have also seen family members and professional care partners alike become stunned when they experience these dramatic changes.

Whether the care partner is a spouse, a daughter, a son or an in-home aide or nurse, social worker or some other professional, we must all learn to adopt an approach commensurate with the person’s frame of reference.

Fortunately for Renee, Jackie is a good fit in caring for someone with dementia. Sadly, this is not the case with every caregiver. The goal in finding proper care is finding someone who can change his/her mindset quickly or has the potential to do so. We have trained thousands of caregivers in best practices dementia care. There are many with the potential to change mindset according to the person’s frame of reference to meet the needs of this precious segment of the elderly population. Find them – they’re out there.  We see them all the time.

Here’s a summary of a typical call we receive:

Engaging Alzheimer’s Representative – Hello, this is Engaging Alzheimer’s. How can I help you?

Daughter (Olivia) of Person with Dementia – My mom (Mrs. Vince) has dementia and is exhibiting aggressive behavior. I don’t know whether we need to increase her meds or move her to an assisted living. Our home care aide (Sylvia) says she can no longer work with mom. What should I do?

Engaging Alzheimer’s Representative – We recommend a visit from our Dementia Coach to assess your mom and interview the home health aide.

Well, in the case of Olivia, she took us up on the offer and invited us to come for a home visit to meet her mom and Sylvia.  As it turned out, “mom” did not need an increase in meds and moving her to an assisted living was also unnecessary.

Here’s the story.  Sylvia was a lovely woman who had been caring for people with dementia many times over the span of her career.  She knew “people like this” and knew “how to handle them”.  Urk!!!  Problem 1 – Who likes to be “handled”?  Not me!  Problem 2 – Sylvia knew Mrs. Vince for almost two years and had become very protective over her, especially about falling. Further, Sylvia wanted Mrs. Vince to eat full meals and shower daily. Mrs. Vince was resistant to these two efforts, which, in the case of showering, often created a situation for falling.

In essence, the problem was a simple case of Sylvia using the wrong approach when interacting with Mrs. Vince. After a few sessions (total of 3 hours) of on-site dementia care coaching with Sylvia, Mrs. Vince was less resistant and Sylvia and Mrs. Vince actually began to enjoy an improved relationship.

There are three parties to this scenario; Mrs. Vince, Sylvia, and Olivia (Mrs. Vince’s daughter). All three have a mutual goal in obtaining optimum quality of life for Mrs. Vince. However, their interpretations of “quality of life” differed. While all three are valid interpretations, Mrs. Vince’s interpretation should be the goal of all parties with due consideration for her safety as well as reasonable outcomes.

Sylvia proved to be dedicated and caring – that was not in question. So, why the problem? Dedication and caring are integral in serving the cognitive impaired. However, the third leg of the stool, skill-set, is equally important. Despite Sylvia’s 20 years as a home health aide, she had never been taught why people with dementia respond the way they do, and instead of trying to learn the why, she did what most people would do, she provided care in a manner consistent with what she believed to be best, with little regard for Mrs. Vince’s feelings in the matter.

In our coaching session we focused on three main points:

• People change. The only constant when working with people with dementia is change.  Therefore, we need to be flexible and ready to change. While Mrs. Vince’s routine used to be to shower daily, her brain was changing and therefore the approach to invite to her to “get ready for the day” needed to change.  In her case, it was a simple change of the words and actually letting her sleep a bit later than she had in the past.

• As people decline in the disease, it is very common that caregivers prepare meals for the cognitive impaired person without the person’s participation. Secondly, the family or care staff then serve the person the meal while they continue about in the kitchen, preparing meals or cleaning up.  The person with dementia is then left to eat by his or her lonesome and often the direct result is a decline in how much food he or she eats.  While Mrs. Vince was no longer able to prepare meals like she once could, she was very capable of putting sugar in coffee and oatmeal.  She was very capable of putting silverware on the table and she was very in tune when someone wanted to be with her and when someone felt they had to be with her.  Sylvia began engaging Mrs. Vince to prepare the table and once they sat together to eat and make small talk or listen to music, Mrs. Vince began eating more.

• Mrs. Vince was in part at risk for falling because she didn’t move much.  This in part because Sylvia was “making” her.  As soon as Sylvia began asking her to help around the kitchen and walk with her to get the mail at the mailbox, Mrs. Vince was naturally up and about more and became more steady on her feet.  We recommended an outside physical therapist to join Mrs. Vince for strength training.  This socialization was enjoyed by Mrs. Vince and Sylvia, and the two of them began exercising because they both needed it, rather than just Mrs. Vince.

And, this particular aide was using the wrong approach with “mom” in certain interactions. Caring for someone who is elderly is often quite different than caring for someone who is elderly and has dementia. Fortunately, the aide was willing and able to learn the appropriate skills needed thereby, avoiding (and dare we say, creating) behavioral problems.

Yes, there are those times when a change in meds is necessary or a decision for out-of-home care is warranted. However, we find the majority of problems arise from a lack of education and training. Increased meds typically decrease the independence and self-sufficiency of the person with dementia and the cost of an assisted living can be prohibitive for many people.

The point of this article is to appeal to families and healthcare professionals to avoid knee-jerk reactions to common behavioral patterns of people with dementia and to not overlook the less dramatic interventions provided by education.

You may remember an article I wrote a few years ago about a primary care family member, who went away for several weeks and the behavior of the person with dementia went significantly downhill. As it turned out, the problem was not the absence of the primary caregiver but a switch in meds right before the caregiver went away. If they had waited to change the meds until after the primary caregiver came back, a lot of guilt and panic could have been avoided.

Much of the problem stems from misinterpretations about dementia. Too many people still think that the person has lost their mind when, in fact, it is a physical change in the brain, which in most cases progresses in severity. But, it is still a condition that can be successfully managed when the caregiver adopts the correct mindset and approach. It is impossible for the person with dementia to adopt a different approach, but this is not true for the family and healthcare professional.

Because of the progressive nature of dementia, the time will come for a move to an assisted living. There may even be a valid reason for increasing meds. However, a premature move or an increase in meds will likely create greater hardship and difficulty than the current behavioral problem.

The Nancy Drew mystery series has been very popular reading since its debut in 1930. The main character (Nancy) is a teenage sleuth that is able to solve every mystery using her calculating personality and her eye for seeing details typically overlooked by other investigators.

As far as we know, Nancy Drew isn’t for hire to help us care for people with dementia. However, we can adopt her investigative style to seek those solutions that do not require “throwing the baby out with the bath water.”

Paul has a most loving relationship with his wife, Peggy. They have been married since 1957 and over the last six years, he has risen to the occasion in his role as “caregiver” since Peggy has been diagnosed with Alzheimer’s disease. Among the things he is doing right, he bought a GPS  for Peggy and leaves it in her purse, which, to date, she doesn’t leave the house without.

Many families think that their loved one is not likely to wander off or get lost. Herein lies the misconception – they might not be prone to wander if their brain was working properly. The trouble is that the brain is broken. Broken, meaning it doesn’t work the way it is supposed to or the way it used to. Therefore, any person with dementia is at risk to wander and disappear without the knowledge of how to get help. In fact, 3 out of 5 people with Alzheimer’s disease will wander. This is what happened to Peggy.

On the Upper East Side of Manhattan, mid-morning, Paul noticed that Peggy was missing when he received an alert on his smart phone that Peggy had left the area. He immediately called his two children, who were able to track Peggy’s exact location on their mobile devices. Paul hopped into his car and started driving to Peggy’s location. She was moving too quickly to be on foot, so he figured she was in a cab, but then the worst case scenarios started racing in his mind.

Had she been grabbed? Mugged and hurt? Did someone see her 5K diamond ring and think they had a good ransom situation at hand? Is she safe? Is she scared? What can I do? Will I get to her in time? Will there be an altercation?

These questions and many more flooded Paul’s mind. He continued to follow Peggy, over the RFK Bridge, now entering Long Island. Panic paralyzed and moved him at the same moment. Time froze and time flew in the same moment. She was headed deep into Long Island. Peggy’s car finally stopped, in River Head – 3 major highways from home. His daughter called the local police. Paul called Peggy’s phone and a man answered. “Is Peggy with you?” he asked. “Yes”, came the reply. Paul was rather firm as he spoke with this total stranger that was now with his wife, answering her phone. Paul reached the destination and pulled up to a house to find a lovely man hosting Peggy in his living room. What in the world happened????

Rewind to 10 minutes before Paul knew Peggy had gone missing. Peggy walked into the parking garage of her building and demanded to the parking attendant, “give me that car, it is my husband’s” and the attendant obliged. Peggy drove herself to Riverhead, NY, in a car that did not belong to her or her husband.   Then to top it off, she stormed her way into the home of a stranger, stating very proudly, “Honey, I’m home!” This stranger was kind enough to answer her phone and help her get home. Paul met her and picked her up 81 miles from home.

Because of this, Paul had to put in place another safety measure. Specifically, he notified garage staff that under no circumstances are they to release his car to Peggy. Instead, they should ask Peggy to wait, and then call Paul or one of her children for directions.

I cannot stress enough the importance of safety and taking preventative measures when caring for someone with cognitive impairment. Paul and Peggy’s episode is not an isolated one. Fortunately, Paul was proactive by planting the GPS on Peggy. A GPS is a great tool in helping you reach a destination. However, they are being used for many other purposes: runners use them, parents use them to keep track of children, and even pets are wearing them. Caring successfully for someone with dementia requires a proactive attitude and a discerning mindset about the capabilities of an adult with cognitive impairment. Do you care enough about someone to keep them safe?

Here are more proactive tips to prevent someone with Alzheimer’s disease from wandering:

• If your loved one has a history of wandering, do not leave them unattended
• Install extra locks  and secure all doors
• Place signs on doors that say “Stop” or “Do not enter”
• Install alarms  in your home or a system that alerts you when doors are opened
• Camouflage doors by placing curtains over them

Here are other devices that are available today:

• Most Smart Phones have a GPS option
• GPS Shoes http://www.gpssmartsole.com/
• GPS watch https://www.keruve.com
• GPS insoles http://www.gpssmartsole.com/
• Project Lifesaver: http://www.projectlifesaver.org/
• GPS car tracker http://www.personalgpstrackers.co.uk/gps-trackers/gps-vehicle-tracker

–Kerry Mills
Dementia Coach

So often I’ll receive a call from clients concerned about a sudden behavioral change in a memory-impaired resident. And, all too often the cause is an introduction of new medication or a change in the dosage of an existing one. Surprisingly, the first interpretation of the behavioral change is that the “dementia has advanced”.

Let me stress for the record that the progressive stages of dementia do not normally advance suddenly. Progression occurs gradually over time. So, if you notice a sudden behavioral change in a resident or a loved one, it would be wise to consider all possible contributing factors and not conclude the worst case scenario – a sudden progression of the disease.

Just such an instance happened recently with a man I will call Arthur, who is in the beginning stages of Alzheimer’s. His situation unfolded like this. His wonderful wife, Alice, regularly returns to her home country, in Europe, for a few weeks to see her family while Arthur stays home. This year, Arthur was diagnosed with Alzheimer’s disease. Alice had a decision to make, should she take her trip or stay home with Arthur?

Arthur and Alice have a son who lives with them and he has been a great team member. Arthur is still working part time and attending church every week. Their daughter lives local and stops in whenever she is needed. I encouraged Alice to take the trip, knowing that this might be her last opportunity to go home for quite some time. So, Alice went to Europe and when she returned, Arthur had changed a great deal. He was sleeping all the time, had lost about five pounds, was not interested in doing anything (almost appeared depressed), and seemed disinterested in seeing his “dear ole Alice”.

What happened! Alice called the doctor who said, “I think the major change of your going away pushed him into the next stage of the disease.” What a blow! Alice’s guilt quotient went through the roof. She immediately regretted her visit home and felt terrible that she chose to do what she needed to do for herself instead of staying home and caring for her husband.

I advised Alice that I didn’t think her being gone for a few weeks was the likely cause of Arthur’s lapse in behavior. It seemed to me that maybe there was more going on. I suggested that maybe Arthur had become a bit depressed because he missed her and within a few days, he might be better. I knew that they had been adjusting his medication before she left and asked if there were any changes made. I suggested she ask the doctors if any of the medications could have caused these changes in Arthur. As it turned out, Arthur had started a new medication just days before Alice went away. As soon as he stopped taking this medication, Arthur, quickly reverted to his lovable self.

There are a few lessons in this event that are worth noting. The first is two-fold. If possible, avoid starting a new medication while the primary care partner is absent for an extended period of time. Also, expect that medication changes will likely result in behavioral changes.

Second, a change in primary care partner should not be done abruptly. Instead, the new care partner should be merged into the environment slowly while the more familiar care partner is still a part of the scene. Once the loved one appears to be at ease with the new care partner, the more familiar care partner can exit the environment.

Third lesson – we, as professionals, need to be careful when offering opinions and reasons for changes in behavior, especially if the care partner’s competency is called into question.

When a behavioral change does occur, don’t panic. Instead, go through a checklist of what might be the cause. Here is a checklist I use in such instances and have found to be very helpful:

• 1) Has there been any recent change in medication or dosage?
• 2) Have there been any changes to the environment?
• 3) Might this person have a urinary tract infection?
• 4) Has the daily routine been altered?
• 5) Has there been a change in care partners?
• 6) Have there been new demands placed on the person?

We have just begun a new year. This is a perfect time to improve your care-giving techniques in order to have more productive interaction with your loved one or a resident who is under your care.

While occasional erratic behavior is often a symptom of dementia, we should always investigate to determine if an environmental change is causing or contributing to the behavior.

Let’s all work to reduce stress in 2015. Happy New Year!

Daisy was having a lot of trouble walking. The less she walked, the more anxious she became about having to walk. She suffered from Alzheimer’s disease as well as a lifelong history of anxiety. This anxiety manifested itself physically (as well as emotionally) in that she would sit in her chair and firmly stroke her thighs and knees, causing her so much pain that she was confined to a wheelchair.

When Bonnie (a nurse) and I first met Daisy, she was very pleasant and easy to engage, but she needed us to keep the conversation going or her anxiety quickly surfaced. Bonnie assisted Daisy and held her while she stood up. She was very nervous about falling, but Bonnie assured her that she would not let her fall. This was the beginning of a new life for Daisy.

Fast-forward a month. Daisy was now under the care of health professionals, who were trained in best care practices for people with dementia. She had a daily routine and cueing throughout the day to help her keep the routine. In addition, she was surrounded by people that loved her. All of these efforts resulted in a woman who became very care free, something she had not known her entire life. Instead of being confined to a wheel chair, Daisy would walk up and down the hallways after she ate breakfast. When someone asked her where she was going, she would answer, “Nowhere. I am walking simply because I can.”

Mr. Kane had suffered a massive stroke that left him with limited mobility in his left arm and a limp in his left leg. This stroke also affected his brain and his ability to manage his emotions and make good decisions, among other things. His family moved him into a beautiful memory care home and most days he was sad he had to be there. He was sad that he needed help to use the bathroom and sad that he needed help to get dressed. He would often try to do these things himself and this often led to frustration on his part and then more sadness at the reality that he had to depend on others.

However, these sad days were quickly forgotten whenever there was a party or event with delicious food.   On one hot summer day, the chef brought everyone outside and hosted a huge BBQ with unlimited servings of seconds and thirds. Mr. Kane was so happy and kept eating! Unfortunately, that afternoon, Mr. Kane complained of a terrible stomachache and when we asked him what he ate, he responded, “seven hot dogs!”   “What?!? Why did you eat so many?” “Because I could”, was his entire answer.

Very often, people with dementia do things that cause us to question their reasoning. Since we do not understand, we often think they are confused, wandering, mixed up, etc. However, they have a reason or a purpose. Just because we don’t know why they are doing what they are doing, it is not helpful to intervene before we ask them why they are doing something or try to figure it out if they aren’t able to verbally communicate.

Frequently, a person with dementia does very little for self because we, the care partners, have taken over the job of doing. Yet, all of us desire to take care of ourselves and to do things for ourselves. People with memory impairment are no different. When we minimize the things that a person with dementia can do, they sometimes do something simply because they can.

I entered the living room and Evelyn was sitting in her regular chair. She was usually looking down the hallway, always attentive to see who was milling about. Typically, she greets staff and residents with a huge smile and finishes it off with a slight giggle. She appears to enjoy coming up with creative ways to compliment people because she never seemed to say the same thing twice. She loves being active, especially working on coloring different pictures. She often points out her art display to anyone entering the community room. She has a great sense of humor and always has a witty comment.

This particular Monday morning, however, Evelyn wasn’t smiling. She wasn’t coloring. She wasn’t attentive. She was sitting in her chair with her eyes closed. Perhaps she was tired, I thought; I know I was. I asked her how she was feeling and she said, “So-so”. “So-so? Me too, I have mornings like that too”, I responded and gave her a big hug. She thanked me, said something sweet under her breath, gave me a polite smile and closed her eyes again.

Later in the morning, one of the CNA’s told me that the team that worked over the previous weekend was not part of the “regular” staff. She told me that they were trying to force Evelyn to do things because they were trying to keep her safe and make sure she ate. For instance, they tried to force her to eat, and that every time she stood up, they were quick to tell her to sit down. Of course their intentions were caring, but the outcome resulted in Evelyn being depressed.

I returned to the living room and approached Evelyn again. This time she was awake, but still wasn’t sporting her genuine smile. I took her hand, gave it a slight squeeze and said, “I heard you didn’t have a great weekend, I am sorry to hear that.” “Yeah”, she muttered, “I don’t really remember what happened, but I don’t want to be pushed around anymore.”

WOW! Not only did Evelyn verbalize why she was upset, she also indicated that she did not want to be in such a situation again! To further highlight how we (people without memory loss) think, read on.

During a recent training of nurses in a local hospital, I explained the function of the brain and the fact that the hippocampus (short term memory) gets damaged very early on and the amygdala (emotional memory) stays intact and is often relied upon even more. One of the nurses exclaimed, “Then I should be nice every time I go into a patient’s room.” She continued, “I always thought they (people with dementia) don’t remember anything, so it didn’t really matter how I acted every time. Now I know they will remember how I treat them.”

I believe that most people do what they think is best or act in a way they think is appropriate. However, the reason that Evelyn had a bad weekend is because she wasn’t treated in a way that made her feel good. The “regular” personnel have all completed our best-care practices training and understand the most effective ways to maximize self-sufficiency and independence for their residents. Instead of forcing Evelyn to eat, they encourage her to eat. Instead of telling her to “sit down”, they ask, “Where would you like to go?” Using this approach, persons with memory impairment experience a sense of control over their own lives (something the rest of us take for granted). When we try to take control, the person with dementia usually responds negatively. This can cause depression, sadness, apathy, agitation, and, at times, even aggression. If poor care practices continue, it won’t be long before the person ceases to engage. In turn, this will cause the inappropriate care strategy to escalate, resulting in a worsening of the person’s negative symptoms.

As the day progressed, Evelyn’s spirit was on the rise. By the time lunch rolled around, Evelyn was back to herself. She commented, “How nice everyone is and how they work so hard to make sure I and the other residents have a nice day.” Evelyn’s negative experience and her quick turnaround, via appropriate care practices, underscore the fact that conventional elder care is not sufficient to meet the challenges of caring for people with memory impairment.

Evelyn’s negative experience is all too common. Let’s strive to make such experiences rare. It doesn’t require more work; it just requires a different approach.

My weekly visits to the Convent are where I can usually count on having at least one of the highlights of my week. This Convent is where the retired sisters are living, and about eight months ago I started training the staff and creating a program for the sisters. There is one part of the home that is set aside for those who need a bit more attention due to their cognitive impairment. It is in here that my favorite little lady lives. I will call her Sister Martha. She is very witty, super sweet and full of compliments. She can also be the first to resist care if she is approached the wrong way.   I think the meanest thing she ever said to a staff member was, “You bum!” Her heart is so sweet, you just want to hug her!

Like many people who suffer with Sister Martha’s condition, she is very forgetful and often can become sad, or afraid of the whereabouts and therefore the safety of her parents and brother, who have long since passed away. She can become suspicious of those who want to help her get ready for the day. The moment she hears the word “shower” she becomes defensive and will not get up off her chair or out of her bed. She loves to compliment the other sisters and the staff. She loves to read whatever is put in front of her. She loves to eat, and more than anything, she likes to laugh.

This week, as I walked into the living room and saw my sweet friend, I went over and kissed her on the forehead. She looked up at me and said, with a serious face and eyes glued to mine, “You really love me, don’t you?” “Of course I do!” was all I could say, as I sat down next to her and we held hands.

Sister Martha was having a bit of a rough morning. She thought that everyone was going to die. Where this thought came from we don’t know. She has many fears like this. I assured her that I would keep her safe, and sat with her for a short while. This led to some small talk, and then to big laughs about silly stuff. The staff had already put on her favorite DVD, an Irish singer who Sister Martha felt she knew so well because, according to her, he visited every day! When I returned an hour later, Sister Martha was singing along and was as happy as could be. The staff, like every other day, knew how to assure her they would keep her safe; they knew how to engage her in things that would take her mind off of her fears, because they knew her. They listen to what she says and therefore can provide more comforting responses.

We cannot always fix the issues that our loved ones with dementia are dealing with, but we can certainly love them and make sure they know that they are not alone. And with this as your aim, I am confident you will do more for your loved one than you can even imagine!