The Whitworths of Arizona, bringing science to you in everyday language.

Friday, January 31, 2014

LBD and Stress 4:
Preserving Familiarity

When dementia starts changing a person’s life in often scary ways, avoiding change and maintaining the familiar becomes critical. Once variety and change may have been fun, exciting and enlightening. Now they move the person away from the known where there is still a sense of control. As the ability to adapt and learn diminishes, so does any appreciation of change. It is the enemy, stealing away feelings of comfort and security. Thus change and variety become stressors and keeping everything as much the same as possible adds feelings of safety and comfort—the opposite of stress.

As with other symptoms, this need for sameness may start well before any cognitive issues become noticeable. Someone who has loved to travel may resist taking a trip, especially if it is to a strange place. A person may have loved to go to the theater but now prefers to watch a video at home. The every-changing crowds that used to add to the fun of theater-going now cause agitation and anxiety.

If you and your loved one are still early in this journey, a certain amount of variety may still be tolerable, even enjoyable. Start now to prepare for when it isn’t. Now is the time do some of the things that won’t be enjoyable later—take that trip you’ve been talking about for years or buy season tickets to the theater. It is also the time to set up routines and rituals that will provide your loved one familiarity later when change is stressful. And finally, it is the time to look ahead and see what else you can do to ensure less change in the future.

Familiarity can be expressed in the way we act and in our relationship to the places and objects around us.

Familiar actions. Routines and rituals are comfortable for us all. Most churches have a set ritual of praying, singing, etc. that helps members feel at home no matter what city they may be in. Mothers know the value of bedtime routines and how they can prevent resistance. A familiar set of actions carries a person along to an expected destination with little effort. Doing something the same way every time can be boring for the person who thrives on change. However, for the PwLBD, rituals and set routines have a soothing, almost mesmerizing quality that decreases stress and fosters comfort.

Developing set routines for bedtime, eating, traveling and the like builds in the comfort and safety of familiarity. If you know exactly what is going to happen, it is easier to take that next step—and the next and the next. Routines for activities like eating out will greatly increase your loved one’s ability to do so with enjoyment. For instance, you could start going out to eat with a friend at the same time and place every week.

Familiar places. Home is of course our most familiar place. Your loved one will be much more comfortable at home than anywhere else. Expand that sense of comfort by building routines of outings such as visits to favorite restaurants and stores. For instance, take the same route in the car, ask for the same table at the restaurant, go through the aisles in the same sequence, and so on. While this may seem boring now, it builds routines that makes it easier to do these things later.

Familiar placement. Find the best placement plan for furniture and other objects and stick with it. When your loved one can count on the things being in the same place day after day, this gives them a sense of control. Move a chair to a different position and this fragile feeling of control is replaced with stress.

Familiar objects. You can make less familiar places seem more inviting by adding personal furniture, photos and other well-loved items. This works well when a move to assisted living is necessary. It also works well when traveling when a favorite blanket can add a touch of sameness that may make the difference between comfort and anxiety.

Buy the same clothes. New clothes used to be fun and even exciting. Now they are just add confusion and take away that feeling of being in control. If your loved one needs new underwear or a new jacket, buy something similar to what they’ve been wearing. Don’t even change the color. The comfort of familiarity is much more important than style—or even functionality, in most cases. When you do have to make changes, don’t make any more than necessary. For instance, replacing the lace-up shoes that the Lewy partner has worn for years with Velcro-fastened shoes can help with independence. But try not to change the color or style.

A Caregiver's Guide to Lewy Body Dementia is a resource book for all LBD caregivers. Buy it from Amazon through The LBD Book Corner on and help to support our work.

Friday, January 24, 2014

LBD and Stress 3: Decreasing Triggers

Last week’s blog was about identifying triggers for stress. Here are some of the more common stressors and some solutions that have worked for others:

Too many people. LBD limits the ability to focus and make multiple choices. Crowds add extra stress with movement and commotion everything can become a jarring jumble.

Fix: Avoid crowds. Learn when malls are least crowded and go shopping then.

A more creative fix: Find a way to isolate yourself from the stressful hubbub of noisy active groups.

Donna, who has early onset dementia, tells this story:

I’ve always loved going to the zoo and so when my husband, Nick, suggested we go, I didn’t hesitate to say yes. It was a crowded Saturday but Nick brought along my ear-buds and MP3 player. When the kids and noise got too much for me, I just turned up the music and tuned them out.We stopped to rest in quieter spots so I could regroup. After about 2 hours I was beat; losing focus and balance (that happens when I get tired) but the ear buds and quieter places worked. I had a great time.

Eventually, Donna’s ability to deal with other aspects of the crowd will likely decrease and music alone may not be enough. However, at this stage in her journey, her MP3 player allowed her to spend an afternoon doing something she loved, even in a crowded atmosphere. Adaptation is the name of the game!

Sensitivities—Lewy’s sensitivity issues can make a light appear brighter than it actually is. Noise may appear not only louder but distorted as well, adding fear.

Fix: Avoid bright lights and loud noises.

A more creative fix for bright light indoors: Sunglasses don’t have to be just for outdoors. When you see your loved one squinting indoors, try sunglasses then too.

Media, especially the TV—As the ability to differentiate between fact and fiction decreases, an exciting or scary television show can feel real and thus, be very stressful.

Fix: Monitor the TV and make an effort to choose shows less likely to cause stress.

A more creative fix: Select some low-stress DVDs for your loved one to choose from instead of TV programs. This helps to maintain a sense of control while eliminating possible triggers for stress.

Physical discomfort in the form of illnesses, infections, injuries, constipation, and other irritants can be present and yet not always recognized as such by your loved one. They just know they are uncomfortable and react accordingly. Find the discomforting trigger, fix it and the stress level will decrease.

Fears and other negative reactions—A damaged ability to communicate and impaired thinking skills work together to trigger stress. These problems will be addressed in later blogs.

Evaluating Your Success

Once you’ve found the trigger and made an attempt to change the situation, take time to evaluate your success. This way you will have a better idea of how to prevent or decrease that particular stress in the future.

In your journal, keep a record of your efforts. Answer questions like these:

  • How did you know there was stress? Was there a certain behavior or action? What was the behavior’s hidden message?
  • What was the stressor? How would you recognize it next time? What can you do to keep it from appearing again? 
  • What did you do to change the situation? How effective were your efforts? What would you do differently next time?
Use this information to improve your stress management skills. Next week, the blog will be about retaining familarity--an important aspect for anyone who is losing control of their life--and their surroundings.

A Caregiver's Guide to Lewy Body Dementia is a resource book for all LBD caregivers. Buy it from Amazon through The LBD Book Corner on and help to support our work.

Friday, January 17, 2014

LBD and Stress 2:
Finding the Triggers

Our likes and dislikes vary and so do our stressors. Anything perceived as painful, annoying, threatening, or disrupting will add stress and when continued, will eventually become too much to handle without internalizing it. The problem for the PwLBD is that with a much lower threshold, “too much” comes quickly.

Internalized stress shows up as a variety of illnesses: high blood pressure, headaches, diabetes, cancer and more. The more intense the stress and the longer lasting the greater the risk. Where an illness, such as dementia, is already present, internalized stress makes the symptoms worse.

With dementia, stress often shows up first as agitated behavior or increased acting-out. Find the trigger and you can probably decrease the stress.

Stress is individual. What bothers one person might not bother someone else at all, and vice versa. While everyone reacts differently, the body’s initial physical responses to stress are the same. Physical signs of stress include increased heart rate, feelings of anxiousness and tense muscles.

Stress is caused by something. Become a sleuth and look for the triggers. Each person’s triggers will be different. They can be anything—a certain word or sound or sight, anything. Bill’s was a word:

I always kissed my husband and told him goodbye when I left his nursing home at night. But he’d wake up agitated in a couple of hours. --Barbara

Bill’s trigger was Barbara telling him goodbye—the agitation was his body’s way of communicating the fear that she wouldn’t return.

Look for:
  • Fears like Bill’s and their triggering words, phrases or events.
  • Pain such as infections, aches, illnesses or sores.
  • Irritants such as an uncomfortable sitting position, wet clothes, hunger, frustration.
  • Sensitivities such as bright lights, loud sounds or Lewy-dangerous drugs.
  • Excesses like crowds or too many choices.
  • Hunger, tiredness or illness.
I learned that if I waited until Bill was asleep and sneaked out, he might still wake up but he wasn’t agitated. –Barbara

Barbara removed the trigger and Bill’s stress-related actions stopped. Once you have an idea of the trigger is, your next step is to change or eliminate it as Barbara did. We’ll share more suggestions about stopping stress next week.

A Caregiver's Guide to Lewy Body Dementia is a resource book for all LBD caregivers. Buy it from Amazon through The LBD Book Corner on and help to support our work.

Friday, January 10, 2014

LBD and Stress, Part 1

Stress is not necessarily bad. It keeps life interesting and fulfilling. It is only dangerous when it exerts more pressure than there are resources to deal with it. Excessive stress is a risk factor for almost all illnesses. LBD attacks the autonomic nervous system (ANS) and lowers the threshold for stress while adding the pressures of living with a progressive disorder. Therefore, stress management becomes a priority for anyone dealing with LBD—or any other degenerative disorder. It will slow the disorder’s advancement and decrease its symptoms.

In response to a threat or challenge, the autonomic nervous system (ANS) prepares for fight or flight:

Perceptual abilities increase so that you can sense what’s happening and respond quickly.

The heart rate (pulse) and breathing speed up, and blood pressure increases, sending more oxygen-rich blood to the large muscles.

Large muscle tone increases. A person can hit harder, lift higher, or run faster.

A PwLBD who misinterprets an event as a threat may use their additional strength to “protect” themselves physically, striking out and even hitting the caregiver. More often, the stress is internalized—turned into illnesses, and with LBD, increased symptoms. There will be more hallucinations, more delusions, etc.—and even more stress.

The ANS also decreases resources for thinking, digestion and the immune system, which are less involved with fighting and fleeing:

Thinking takes time that a crisis does not allow. Therefore, it is not given top priority by the ANS and one’s ability to think creatively or see associations during stress is impaired. Instead, we depend on learned responses. You can see why a PwLBD, whose thinking is already damaged and who already acts from impulse rather than reason, functions poorly during stress.

Digestion is an ongoing process that can be sacrificed during times of crisis to provide extra energy for more needed functions. That’s why a person may feel nauseous or constipated, or have diarrhea when frightened. Lewy also compromises this system, with increased results during stress.

The immune system. Immunity is a long term process and the body can safely shut it down for short periods so as to have more energy to fight more immediate battles. LBD tends to increase the frequency of infections already. This puts the PwLBD at even more risk.

One way to manage stress is to increase its threshold—the amount of stress a body can tolerate before feeling overwhelmed. A healthy lifestyle builds up the body’s reserves and raises the stress threshold. This means getting lots of exercise, eating a healthy diet (9/5/13 blog), drinking enough water and getting plenty of sleep. This is true for caregiver and loved one alike. Staying healthy allows the body to use its resources to deal with the stress instead of the infections or other illnesses.

Controlling the body’s responses preserves one’s resources. We can choose how to respond to the events in our lives. Techniques like acupuncture, acupressure, massage or even gentle touch (6/21/13 blog) help you to respond to potential stressors with less anxiety and agitation. Deep breathing and a variety of meditation methods also use the brain’s power to send calming messages to your body.

Another way to deal with stress is to decrease the amount a person has to deal with. Controlling the environment limits stress by eliminating triggers, and decreasing pain, fear, or other discomforts. Find the triggers, change the situation, and stress-related behavior will usually stop. However, as communication becomes difficult, this is not always easy.

Recognizing behavior as communication helps caregivers to identify stressors. As verbal communication decrease and damaged thinking skills keep a person from understanding what pains them, behavior often becomes the major mode of communication.

In the next few weeks, we will discuss stress management and viewing behavior as stress related communication.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on in the LBD Book Corner.

Friday, January 3, 2014

A New Year

When a family is dealing with dementia, it is not always easy to be optimistic about the New Year—or anything new for that matter. We learn to value the old, the known, the familiar. We know that anything new, anything different, anything unexpected is not likely to be fun for our loved ones—and therefore not for us either. Our loved ones need familiarity. They need their rituals and their routines to give their days and their lives order and to give them a touch of that sense of control that is slowly but relentlessly fading.

As caregivers, we know that Lewy is progressively degenerative. There may be ups but the lows follow and become increasingly lower. As the year unrolls, unwanted changes will be more likely that than good news. Additional worries and tasks add burdens to a life that is often already overwhelming. We watch our loved ones decline and live for the few sparks of the person-that-was that shines through now and then.

How then can we look forward to this new year and along with the changes that it brings? How then can we embrace this new year and call it our own?

It’s in appreciating the little things and keeping a positive outlook. That doesn’t mean hiding from reality or denying Lewy. It means being on the outlook for the good things. The touch of humor, the beautiful sunset, the cozy chair by a warm fireplace, an ice cream cone, the call from family. The shared joke—even when it doesn’t make sense. A walk around the block, a visit from a friend. Kindness from a stranger. A kind word or a thoughtful gift. Make a point of consciously appreciating each positive and the negatives will be a little less burdensome.

It’s in the giving. Giving is often more rewarding than receiving. Even with a crowded life and little free time, find ways to give, if only a smile, a kind word or an inexpensive gift. For gifting to be rewarding to the gifter, it should be done lovingly and freely without expectations or conditions. Often this gifting will be to your loved one, but reach out and give to others as well. You’ll be surprised at how good it feels. (reference)

It’s in the feelings of gratitude. Look for ways to feel fortunate and ways to feel wealthy—not just monetarily but in other ways, too. When you are down and feeling overwhelmed, look for things to feel grateful for. You can even keep a gratitude journal and refer to it when you need a lift. (reference)

And it’s in the stress management. Rigorously keep stress to a minimum. Anything that causes you or your loved one stress is going to increase symptoms. Be alert for triggers and work around them. If a certain type of music makes either of you irritated or anxious, avoid it like the plague. If red plates make meals less troublesome (and they often do!) buy red plates and use them religiously. If crowds are too stressful anymore, avoid them. Find other times or other places to shop, or enjoy an outing.

Look for the fun, the humor, the touches of kindness and focus on those. Save the memories of them up in your Gratitude Journal and use these “tokens” to replay in your mind when you are stressed or hurting. You’ll be amazed at how many tokens you can find if you look. And each one will help you feel more optimistic, more loved and loving. Each one will make the difficult job of caregiving a little easier.

For more about LBD, read The Whitworth’s A Caregiver’s Guide to Lewy Body Dementia, available in the LBD Book Corner on