Happy Triggers

Most caregivers have learned to look for triggers that increase stress—and acting out. But do you also look for triggers that decrease stress? Like the acting-out triggers, these “happy triggers” can be very individual but there are many that work for most of our LBDers.

Music is one of the more general happy triggers. It works wonders with many people. Usually, soft elevator or easy-listening music is best, but consider individual tastes too. Or maybe it is just one tune that brings back feelings about happy times. Or a specific kind of music. Beth told of how her mother had collected music boxes. When she visited her mother, she’d play them. It not only calmed her mother, it pleased the other residents too!

Touch is another fairly general happy trigger, especially when used with a gentle tone of voice. Remember to move slowly and touch softly. Harold paced when he became agitated. His wife learned to go up to him and, putting her hand gently on his arm, talk to him softly. “It didn’t really matter what I said,” she told her group. Just the words and the touch made him less agitated. And then I could steer him over to his chair and he’d sit down.”

A third are family photos. Whenever Judy placed an album filled with family pictures in her father’s hands, he would calm down. He loved to look at the photos even though he couldn’t identify all of the faces anymore.

Tools of a past trade or hobby often work well as happy triggers. Lydia had been a librarian. Her “happy trigger was a book. Give her one and she’d smell it and hug it to her chest and smile. For Janice, the mother of five, it was a baby doll. Some feel that using dolls with dementia patients is demeaning and “infantizing.” Our own take on this is that if it the doll has a calming effect on your loved one, it is a shame not to use it.

The further along the LBD journey your loved one is, the more they rely on feelings rather than words and concepts. And so a happy trigger can be anything that generates positive feelings, feelings of adequacy and even accomplishment, of safety and security, of love and affection, of comfort and fun. Don’t forget humor. Not being able to express humor anymore does not mean that it isn’t appreciated. And so, to find your loved one’s individual “happy triggers” think about what has made them happy in the past. They are still the same person, after all.

Of course, you must take into consideration LBD’s sensitivities. Jerry once loved loud music—the faster and louder the better, but now hearing it makes him agitated. Myron once loved to go to a crowded mall and people watch. Now crowds overwhelm him. You also have to take into consideration their lost executive skills. Ella loved TV mystery shows. Now she can’t tell what’s real and what’s not and she becomes frightened because she believes she is in danger.

Parkinson’s families learn to adapt for their loved one’s mobility issues. Leon walked miles each day; now his wife pushes him around the block in his wheelchair when he gets agitated. In fact that’s the name of the game for all LBD families. What other kind of music might be a “happy trigger” for Jerry? Where can Myron indulge in people watching when he isn’t in a crowed mall? What other kinds of TV will entertain and calm Ella? It’s all a matter of trial and error.

But once you’ve found your loved one’s happy triggers, use them. Of course, you won’t need them as much if you’ve also found those things that trigger the acting-out and do your best to avoid them. Use the happy triggers when the acting-out occurs anyway and you’ll both be happier. In fact use the happy triggers often, with or without acting-out. Why not? We all like being happy!

Assistance Dogs and Dementia

There are several ways pets, especially dogs, can be helpful with our LBD loved ones. In her article about how pets bring happiness and healing, Sue Cartledge talks about therapy dogs. These well trained animals—which can also include other pets such as cats, go with their owners to visit residents in memory care facilities.  Residents talked about how “when I held the dog, the pain in my hip went away” and there were also reports that interacting with the pets improved communication skills.

Mary Pat Baldauf tells about her father, with LBD, and his pet dog, Gizmo, on the Every Woman blog site. This little dog provided her father with unconditional love, friendship and an ever present alarm system that enhanced his final days.

But the article that really impressed me one in the Alzheimer’s Weekly about Nyja, an assistance dog. Therapy dogs are wonderful in a residential setting but don’t help the family where the loved one is still at home. And it’s the fortunate family who finds a dog, like Gizmo, who can become such a help without formal training. 

However, the Canine Companions for Independence trains Assistance dogs like Nyja to provide a multitude of services, from simple companionship to physical help like picking up something that’s been dropped to alerting the caregiver if their charge is in danger or guiding a lost owner home.

This doesn’t happen overnight and it isn’t for everyone. First, the training is similar to that for a service dog, except that it includes the dog, the person with dementia and a “facilitator”—usually the caregiver. Both patient and caregiver need to be “dog” people. The patient, because there needs to be a bond with the dog. The caregiver, because taking on the care of a pet is an added responsibility in an already full schedule. Also, training needs to start as early in the progress of the disease as possible, while the patient still has some ability to learn. Once the training is done, the benefits are many. Here are some:

•          Decreased social isolation and improved communication skills.  Dogs are social animals and people are attracted to them—and by proximity, to their owner. 
•          Reduced agitation. The dog’s unconditional love and acceptance tends to reduce anxiety and agitation. 
•         Increased companionship. The patient always has a friend nearby, thus reducing loneliness.
•          Increased physical activity. Depending on a patient’s mobility, they may be able to groom the animal, toss a ball, or even go for walks.
•          Increased pleasure. An ever present, undemanding companion makes life more pleasant.
•          Caregiver alert: The presence of an Assistance dog is like another pair of eyes, with an alarm system for the caregiver. The dog can warn a person in another room if their charge needs help.
•          Increased feelings of usefulness: Chores like grooming and “being responsible” for their pet serve to make a person feel useful.
•          Less stress: The calming presence of an accepting pet calms and decreases stress.
•          Increased clarity, windows of memory, etc.: Due to the decreased stress!
•          Decreased depression: Probably due to “all of the above.”

If this subject interests you, we highly recommend that you click on the links in this blog and read the other articles. And feel free to share some of your own experiences as comments!

Using Behavior Management to Deal with Acting-Out

 In our March 2^nd blog, we talked about how LBD damages a person’s ability to control their behavior and how action follows closely behind feeling. Therefore, it is actually the caregiver’s behavior, and perhaps even more importantly, the caregiver's attitude, that must be managed/changed to decrease LBD related acting out. Here are some things you can do:

Take your time. Dementia slows everything down and it can be stressful to try to keep up.  Talk a little slower and give your loved one lots of time to answer. It might help to silently and slowly count to ten before expecting an answer. When helping your loved one bath or eat or anything else, don’t rush even if you are feeling time pressures. It really won’t take that much longer because your loved one will be more able to cooperate.

Practice feeling calm. As communication skills decrease, perceptions increase. Lewy folks pick up on tensions easily. However, their interpretation skills are flawed. They may identify hidden anger at a situation, for instance, as a rejection of them—and act out. And so, work on feeling (not just acting) relaxed when you are around your loved one. It helps them to stay calmer too.

 Have reasonable expectations. Don’t expect more than your loved one can give. As Lewy takes away their abilities, it becomes hurtful to challenge them to “do better,” or “try harder” or to remind they how easy a task “used to be.” And when Lewy folks feel hurt, or when they feel they've let you down,  they act out.....

 “It’s the disease talking, not my loved one. It’s Lewy, not…..” Make this your mantra. It will help you to ignore Lewy’s hurtful behavior and you will find it easier to maintain a loving, caring attitude.

And finally, use touch and an affectionate tone of voice. These elicit positive feelings and decreases acting out. Dementia does not take away the enjoyment of loving behaviors. A hug, a gentle pat, a soft, loving tone all decrease stress and thus, acting out.

Do you have any suggestions that have worked for you?

The Importance of Environment

It’s been a while since we posted anything. Sorry—busy with other stuff—holidays, family, etc.  After all we ARE retired! But we are back. Dealing with acting-out seems to be a major topic of concern, and rightfully so. Since behavior management drugs can be so dangerous for our LBD folks, our focus is in identifying ways to do this with fewer or no drugs.

Acting out is the behavior your loved one uses to communicate feelings of anxiety, stress, fear or pain. If you can identify the trigger of the feeling, you are on your way to decreasing the behavior. For instance, if it is a certain time of day, what is he usually doing then? Can you make that less stressful?

LBD limits your loved one’s ability to do executive tasks like think, learn or make decisions. Thus, anything that requires an attempt to do these tasks will increase anxiety. (Just think about what it's like when you try to do something you can't figure out how to do, especially if it is something you think you should be able to.)  In addition, LBDers are supersensitive to intense physical stimuli such as light, noise, heat, cold, etc. Their bodies just don’t adapt well anymore.  Here are some things you can manage in your environment: 

Clutter: A room filled with clutter gives your loved one too many choices of where to direct their attention.  Put away all but a few items.

Light:  Besides the general sensitivity to strong stimuli, LBD folks are especially sensitive to light. Make sure your rooms are lighted in a soft, non-glaring light. Avoid sun-glare. Keep your LBDer shaded when you go outside.

Noise: Make sure TVs and other types of noise stay at tolerable levels.  Use softer tones yourself and teach others to do so around your loved one.

Media: LBD takes away the ability to separate reality from make-believe. For example, if the police are chasing the bad guy, you loved one may join in the chase—or feel chased. Monitor all media and replace exciting, scary shows with something more calming.

Choices:  Offer no more than two. Yes or no, here or there, the chair or the sofa, etc.

People: Try to avoid crowds; they bring too much stimuli and require too many choices. For instance, the murmur of several different people talking at the same time at a party or even a small family gathering can feel overpowering.

Replacement items:  New items are no longer fun—they require learning. Try to duplicate a worn out sweater instead of buying one of a different color or style. Buy the same kind of underwear. 

Watch for future entries where we'll talk about more ways to decrease acting out.