Recognizing Dementia Behaviors 1

The behaviors that are exhibited by someone with Dementia can be very confusing to family and friends. I'm going to tell several stories that demonstrate some of these behaviors with suggestions of how to manage them. I've changed the names and some features to help keep anonymity.

Adjusting to Living Away from a Spouse
After caring for his wife of 60 years for as long as he could, Joe had to finally put his wife, Cloe, into a residential facility. He never dreamed he would have to do this but his own health was declining and he just couldn't take care of her anymore. He felt incredibly guilty to "have to do this to her." On top of his guilt he had to contend with Cloe begging him to take her home every time he visited. She would vacillate between tearfulness to anger. Poor Joe was devastated. When I was at the facility I would make a point of finding her to see how she was adjusting when Joe wasn't there. She would be visiting with a caregiver, reading or just contentedly watching other activities. I made a point of explaining to Joe about "associative memory" and would tell him how I found Cloe behaving so that he didn't think she was pining away for him all of the time. Joe finally made the decision that he could no longer visit because Cloe's behavior was too upsetting for him.

Why does this happen? Memories often become spotty as dementia progresses but I have found that "associative memory" sometimes lasts a long time. Something the person with dementia sees triggers a particular memory and they react to it. The reaction has no reality to it and when the memory trigger goes away, typically the person will quickly calm down again. The memory trigger will often lessen and go away over time but it can take months. Here is a story that is a more amusing example of this:

A client of mine, Mary, was a smoker who lived in assisted living. Usually, as some point during my visits she would ask me to walk outside with her so that she could have a smoke, which I would do. This went on for several years. Then Mary's dementia got to the point that I knew I needed to move her to a dementia facility but I had a problem. She smoked. No dementia facility would take a smoker. While I understood the inherent liability issue, it was a real dilemma for me. Then, Mary got very sick. So sick that she ended up spending several days in the hospital. Low and behold she forgot that she smoked! I quickly got her moved into the dementia facility and told the staff that if she brought up smoking they should say something like, "I though you gave up smoking years ago." For months, every time I visited Mary she would at some point tell me that she was dying for a cigarette. I would say something about her giving up smoking and was able to redirect her to other topics. I talked to the staff who said that she never brought it up around any of them. I was that memory trigger. It look a good nine months for that memory to fade away.

When a Spouse dies.
I was contacted by a family who's grandfather had recently died. Visiting grandma was perplexing to the family because grandma would talk as though grandpa was still alive. When they would remind grandma that her husband had died, grandma would experience grief as though she had heard it the first time. The family didn't know how to best handle this situation.

When a person has dementia with memory problems, short-term memory is the first to go. Severe short-term memory can mean that hearing sometime distressing is just like hearing it the first time, each time. The best way to address this is to avoid reminding the person, in this case grandma, that grandpa has died. If grandma brings up the fact that grandpa isn't there have a simple explanation ready such as he went to the store and then redirect the conversation to something else. This may take some trial-and-error to find what works but it's far more compassionate than making your loved one experience the shock over and over.

Amazing Will to Live - Update 11/7/2010

Amy has started eating, and keeping what she eats down. (She had been having a lot of nausea) Last Monday, she slept through the entire night for the first time since her surgery. She is now joking with the caregivers and recognizing the staff at the facility. She still has a fair amount of agitation but the caregivers and staff are trying to deal with it using exercise instead of medication. The medication makes her sleep during the day and then she is up all night. She is no longer on the oxygen. She actually gave herself a black eye fighting with the tubing! But her oxygen saturation is O.K. now. WOW!

The only real casualty was a cell phone that took a swim in the toilet. Those cell phones just don't swim well at all!

I'm looking forward to taking her to her appointment with the surgeon at the end of the month. I'm sure the surgeon will be amazed, too!

This is what Amy wanted, a chance to live pain free. She wasn't afraid to fight to beat the odds, even with severe dementia. She has taught me so much!

Amazing Will to Live - Update 10/31/2010

"Amy" is still plugging along. Until this past week she hadn't been eating enough to keep a fly healthy but she is now starting to eat more at meals. [She has never been a big eater and doesn't have much in the way of "reserves", meaning fat.] She has been walking, joking with her caregivers and is recognizing the staff again. Is she out of the woods? Probably not. But she is a daily miracle!

Amazing Will to Live - Update 10/26/2010

Amy is still with us, fighting every day to live... almost literally! Her poor caregivers deserve combat pay!

The Amazing Will To Live

I have a client, I will call her Amy, who has the most amazing will to live. By rights she should have died the Friday before last. Her oxygen saturation was dismal without the O2 being turned up all the way, her kidneys were shutting down and she had an infection. The doctors didn't think she would live through the night but she's still here, fighting every minute to regain strength so that she can continue living.

This is a person with severe dementia, severe osteoporosis and is pushing 90 years old. How did she get to this point?

About a year ago, Amy fell and basically shattered her hip, actually the top part of her femur. The surgeon put in a metal plate and dozens of screws to hold her bone together so it could heal. Because of her dementia, we were unable to keep Amy from walking too early. If she had to use the bathroom she could not understand why she couldn't just walk the few feet to the toilet even though a caregiver was at her elbow to help her into her wheelchair. People with dementia are not able to understand cause and effect anymore. The facility staff did the best they could but she broke the plate and a few screws early on. The amazing thing was that she wasn't having any pain. The doctor decided to just leave it and see it it would still heal.

About six weeks ago, Amy started having pain... a lot of pain. We don't really know why but it could have been that there had been scar tissue holding everything in place and it either got torn loose or might have been just reabsorbed into her body. Amy was sent to the hospital where she spent a couple nights while the doctors tried to decided what to do. The doctors ultimately decided to send her back to the facility where she lives with "palative care." Palative Care means that they are managing pain. It became obvious pretty quickly that this was not a viable option for Amy. Either she couldn't understand why she couldn't move about without a lot of pain or she had to be sedated so much that she was in a stupor.

I talked with the administrator and the director of nursing at the facility, who agreed with me that this was no way for Amy to live the rest of her life. I called the family (who live a long way away) and discussed the situation with them. We came to the agreement that it would be better to take the risk of surgery rather than "sentence" Amy to the current situation. I called the surgeon who had done the original surgery. We discussed options and I decided on the option that wouldn't "fix" her hip but would take the pain away and still allow her a certain amount of mobility. Amy had been using a wheelchair a lot after the first surgery so she wouldn't miss not being able to walk very much. Again, I ran this option past the family, who also agreed. I also talked with Amy about this. Even though she has severe dementia I felt that she could let me know whether she was in agreement or if the thought of surgery was frightening or repellant to her. She fully agreed to have the surgery. She didn't like being in pain and wanted to do what was needed to stop the pain.

The doctor scheduled the surgery for a Thursday and instructed me to have Amy at the hospital by a certain time on Wednesday. Amy was in a good mood and was able to give consent [unofficial but still important] to the doctor after the doctor explained the procedure again. Amy made it through the surgery without a problem. Unfortunately, on Friday the problems started. Amy's kidneys started shutting down and she got an infection on top of needing all the oxygen they could pump into her. The doctors didn't think Amy would live through Friday night but she was still "kicking" on Saturday. Sunday the doctor notified me that Amy needed a blood transfusion. I talked with the family and told the doctor that yes, we wanted Amy to have the blood. [We figured that if she was fighting the least we could do is give her the tools to fight with.] By Tuesday the doctor said she could return to the facility under "comfort care." [Meaning= death is imminent] Well, today is Sunday and she is still with us. Her kidneys have started working again and she is over the infection. She still needs oxygen but that is minor. She is getting up for some meals. She's having trouble keeping food down [probably a leftover from the anasthesia] but she is obviously fighting to live.

Some people might have disagreed about having surgery arguing that someone with such severe dementia has no quality of life left. If you could see her, you would know what determination and quality of life is all about. Amy is one amazing woman and I am honored to know her and be allowed to serve as her Power of Attorney. Life is Precious... no matter what age.

Mom/Dad Seem to Make Sense... But...

Sometimes Dementia can be very difficult to pin down. It can actually be a "moving target." It can be worse one day a much better the next. If the loved one was highly intelligent before developing dementia, they can finesse it [or cover up] for quite some time. Also, no matter how severe a person's dementia is, that person can pull themselves together and behave perfectly normal for a short period of time. That's why it is sometimes so difficult to convince the doctor or other medical professionals that there is a problem.

Please remember: Anyone who is developing dementia is terrified. One of the unique features of the brain is that while it can immediately tell you of pain elsewhere in your body, it only has a vague awareness that something might be wrong with the brain itself. Most people who have dementia are either totally unaware or only have only a vague awareness that something is wrong.

What does dementia do? In the mild to moderate stages it starts stripping away at social skills. Your loved one may occasionally do or say something totally [seamingly] out of character. What had been personality "quirks" become magnified.

If they were very structured in their routine throughout their life, you might find that they become even more structured. Someone who might have been a detailed person may lose their ability to organize or recognize what are important papers, garbage, etc., so they throw away nothing and will not allow anyone else to throw it away. Sometimes they might spend copious amounts of time going through papers trying to make sense out of them. Even if they ask someone else to tell them what the paper(s) is about, they don't really believe it.

Frequently, the ability to write checks and track money is one of the first signs that the dementia is becoming problematic. Bills may start being paid late or not at all. When you try to discuss a possible solution you are met with agitation and defensiveness.

Over time, your loved one may lose the ability to plan and prepare even simple meals; forget how to use the washer and dryer; lose the ability to clean their home; wear the same clothes for weeks on end; be unable to manage their medication or quit taking their medication altogether.

The worst part is when your loved ones deny they need assistance.

What you can do:

1. Keep a journal. This can be very helpful to the medical professionals whether your loved one is seeing a doctor or not. It will also help you to identify patterns of behavior.


2. Encourage your loved ones to get their estate planning papers done if they have not already done so. These include Powers of Attorney (Durable Financial and Healthcare), Healthcare Directive and Will. A Power of Attorney document will allow the designated person to intervene, indirectly if necessary, to ensure important bills and other paperwork continued to be addressed in a timely manner.


3. Avoid pointing out the problem areas. Nobody likes to be reminded of their shortcomings, especially by their children. Humbly suggest solutions and try to let all but the most concerning problems slide.


4. Introduce caregivers as "friends" and not "caregivers." This allows your loved one to save face and keep their dignity at a time when their dignity is feeling pretty shredded. This is easier to do when the person designated as power of attorney can set up the caregivers without the loved one's knowledge.


5. Get the billing addresses changed to the designated power of attorney. This is especially effective if the loved one also has memory problems. What is out of sight is truly out of mind. Do it in slow increments. Have the bank statement addresses changed first and see what happens. If the loved one doesn't miss them, then the designated power of attorney can access the loved one's money to pay the bills. If the loved one does miss the bank statement, then feign an "oops" and change the address back.


6. Emphasize that you want your loved one(s) to stay as independent as they want for as long as they want. Point out what they are still doing well. Minimize [to your loved one] the problem areas. Ask what they would like you to do to assist and how they would like you to do it.


7. If you keep running into resistance from your loved one, get a professional consultation from a care manager or someone who specializes in behavior modification.


8. Remember: You cannot force your loved one out of their home without a court order. If your loved one continues to stay at home and is unsafe, you might need to use some "tough love." That means not rescuing them when they get themselves in a bind and call you for assistance. You will want to plan your "tough love" strategy. Part of this strategy could be calling local law enforcement to do a "wellness check" on your loved one and/or calling Adult Protective Services for their intervention. As a last resort, if nothing seems to work and there are safety issues or extreme self-neglect, you may need to discuss initiating a petition of guardianship for your loved one with an attorney.