When Nothing Seems to Work, Part 4

Two weeks ago, the blog was a third in a series about those difficult to deal with dementia-related behaviors that just don't seem to respond well to the easy fixes. While nothing will work all the time, and different things work best for different people, there are some basic guidelines. As a review:

• A care partner who has done the homework and has a fair understanding of how the dementia-riddled brain operates has a better chance of getting cooperation from a loved one than one who continues use old, once very workable methods of communicating.
• When abstract thinking goes, emotions take over. Since the brain considers anything generating negative emotions a crises, these emotions take precedence over any other considerations.
• The dementia brain has only one-track. Once an emotion is present, the door is closed to anything more. Therefore, a PlwD will often seem much more negative than before and very resistant to change. 
• A person's basic way of relating to the people they care about doesn't change although it will disintegrate. Thus, a couple with a calm, empathetic relationship prior-dementia will likely fare better than the couple with more ups and downs, even when the couples are equally caring.

This week we are talking about something else that doesn't change. A PlwLBD will probably try to maintain control of their life in the same way as they always have--only more intensively. Some people deal with life-changing issues by wanting to know all about them. Others deal with them by denying their presence. Most do a little of both, not denying heavily but not wanting to own it totally either. The care partner's job is to figure out which style their loved one uses, accept it and work with it. This is especially true if their loved one's style is heavily towards gaining knowledge or towards denial.

The first is fairly easy to work with. You just share everything you learn with your loved one. Likely you don't need to be sensitive about sharing too much. The more they know the more secure they feel--even if it is bad. Then you can use this information to work with them:

When Harold got all upset about the people who were walking all over our lawn, I just told him that it was Lewy playing tricks on him again. He still saw the people but they didn't bother him anymore because he'd read all about hallucinations and how they could be so real. -- Anita

Anita was able to use Harold's need to know and understand his illness to get past his brain's insistence that the people on his lawn were real. This may or may not continue as Harold's LBD progresses and his ability to accept a different view--even one he supports--diminishes. Eventually, Anita may have to simply join his reality and chase the people off.

The people who prefer denial are more difficult to deal with. The sad thing is that this tends to get stronger as the dementia progresses.

Jerry has never liked going to the doctor although he didn't used to be as resistant about it as he is now. "The doctor has to earn his pay and so he'll find something even if nothing's wrong," he used to say. I finally got him to go to a specialist who diagnosed him with LBD but Jerry doesn't accept the diagnosis and he won't go at all now. I'm at my wits end. He refuses his medications too. "I'm just fine," he insists. "I'm not taking pills for something I don't have." -- Claudia

Jerry has always dealt with the unpleasant things in his life by ignoring them as best he could. Pre-dementia, he was able to choose what to ignore and what he knew he had to deal with. But now, his brain isn't able to make choices and so he denies it all because that has always been his first choice.


First, Claudia should avoid telling Jerry about doctor's appointments ahead of time. A PlwD's difficulty with time management means that they will usually deal with knowledge of future events by becoming anxious. If it is something they want, such as a visit to see grandchildren, the anxiety will be about missing the event. For Jerry, his increased anxiety will turn into more resistance. Instead, Claudia can try:

• Joining his reality and suggesting that they go to the doctor for a checkup, just to show the doctor how well he is doing.
• Threra-fibs, discussed in a couple of recent blogs. The "trick" type is most likely to work, especially that of suggesting a beloved outing and adding the doctor's visit as an "afterthought."
• Simply putting her foot down and saying, "We are going. Now, come along." As a PlwD becomes more dependent and more accepting of their care partner's decisions, this is more and more likely to work. Claudia shouldn't expect Jerry to go to the doctor willingly, but at this point, going in any mood is better than not going at all. 

When Claudia is dealing with Jerry's negative feelings and resistance, she needs to be careful not to let Jerry's mood rub off on her. Although he has no choice but to act on what he feels, she CAN resist being pulled down by his mood. If she ignores his negativity, she might even get him to mirror her positive attitude!

As for medications,

• Claudia might want to discuss with the doctor just how important the various pills are. If they are only marginally helpful, then allowing Jerry the feeling of control in refusing them might go further than the pills do in improving his self-esteem and therefore, his actions.
• If the medications are important, then the trick type of thera-fibs discusses in earlier blogs may again be the best answer. By crushing the pills and putting them in something Jerry likes, Claudia may be able to get them down him. 

However, nothing works all the time and different things work with different people. You just have to remember how the dementia-riddled brain works and keep exploring new ways to work with it.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.