Yes, dementia makes our loved ones similar to a child in so many ways. But there are several big differences.
Learning. Children can learn. Your loved one has lost much of that capability. Parents use various forms of discipline to teach children how to act. A child learns that if they do x, then y happens. Your loved one has lost the ability to understand cause and effect. Punishment simply feels like an attack. Praise feels good but your loved one probably can’t connect it with future behavior. For your loved one, prevention, bribes and distraction work better. Of course, there’s no learning going on and so you have to deal with each incident individually.
Using examples. Children often learn quickly by watching others and copying. Your loved one may be able to learn this way too—if you model the activity for them enough times. It takes an normal adult about six repetitions to learn something like a phone number. It takes a person with LBD many, many more repetitions, but it can sometimes be done. This is one big difference between LBD and other dementias. A person with Alzheimer’s loses the ability to learn at all. A vestige of that ability remains with LBD, but it is very limited. For example, eating can often become an issue. Reteach your loved one to eat by sitting across from him and with a smile, and slowing taking bite after bite. The smile is very important. Don’t talk—that’s distracting. Expect this to take far more than one meal to be effective. (See the 11/22/13 blog)
Perceptions of danger. People with dementia have often lost the ability to have a clear perception of danger. These skills are gone along with the ability to learn. What your loved one cannot do, he simply can’t do. Not now and probably not later either. Don’t expect it of him or castigate him because of his failures.
Instead, set up precautions: locks that he can’t unlock; alarms that tell you he has entered an unsafe area. Black paint or carpets in front of doors may appear as a chasm and be as good as a lock—unless this is a place where you want him to pass through at times, like the front door. Use baby monitors and surveillance cameras when you can’t be in the room with him.
When precautions don’t work—and they won’t all the time, use bribes to distract. Bribes are not a healthy way to deal with children. They teach manipulation. With your loved one, they don’t teach anything—they simply distract. The offer of a favorite treat works much better to get your loved one out of the street than yelling will.
Social rules. The ability to understand and follow social rules and niceties goes the way of being able to understand danger. Lower your expectations. Shrug, smile and move on. Others will follow your example. Apologize if necessary. Judy Scarff, in her book, The Journey Ahead: A Practical Guide for In-Home Caregivers, suggests a "Yikes" card to hand out to people who may not otherwise understand. This is a business-sized card that says something like, "Please excuse my loved one. He has a brain-damaging illness."
Size. Your loved one may be bigger and stronger than you are. Unlike a parent with a small child, you can’t use your size to intimidate or your strength to protect. You can’t just pick him up and carry him out of danger. If he becomes frightened or feels attacked, adrenalin kicks in and adds to his strength. You have to use your ingenuity to entice him away from danger or damage. Remember that he will mirror the intensity of your feelings and so try to stay calm. If you act angry or frightened, his behavior—and strength—will escalate. Bribes work well. Smile, offer an alternative activity and be patient. Your serenity will help him to calm down.
Adult concept. Your loved one has been an adult for many years. He may be acting like a child, but he doesn’t feel like one. You may have to set similar limits and safeguards that you’d set for a child, but if you treat him like a child, his behavior will likely increase due to frustration. Treat him with dignity and respect and you both will feel better.
For more, read A Caregiver's Guide to Lewy Body Dementia, available on LBDtools.com.
Friday, December 20, 2013
Friday, December 13, 2013
Lewy's Visual Problems
When Annie went from the kitchen with a tile floor to living room’s carpeted floor, she’d step and stumble. To her, the change of texture looked like a change in height. Janice kept spilling her coffee. She’d reach for it and her hand would miss it by inches—or hit it and instead of clasping it. Charles blinked a lot. His daughter thought he might have sore eyes. Laura complained of often seeing two of everything, especially when she was tired. Worse, sometime her vision was cloudy and blurred. Her husband suspected cataracts. Harold saw a pillow on the sofa and thought it was the cat. Gary kept seeing a little black dog when he knew nothing was there. He and his wife thought maybe there was a blood clot in his eye. All of these people had LBD-related visual perception problems. In each case, they went to the optometrist and get a clean bill of health for their eyes. It wasn’t their eyes causing the problem. It was their brain’s perceptual abilities that were at fault.
The occipital lobe at the back of the brain is particularly important for processing visual information, that is, for making sense of what we see. Lewy bodies often migrate to that area of the brain and when they do, visual perceptions can be affected. The following problems can all occur long before any cognitive issues become serious:
When failing cognitive abilities become involved, the problems can become more difficult. Ray kept using other receptacles for the toilet—a flower pot, the laundry basket, even the corner of the closet and was confused when his wife got angry at him. Marge saw socks on the sofa, thought they were snakes and started screaming. Lenard also saw a little black dog, but he believed it was real and had to be fed and even walked.
In Ray’s case he was seeing these receptacles as toilets. This didn’t seem odd to him because his ability to make judgments had already been affected. He didn’t think, “What an odd place for a toilet.” He just used it. Marge’s problem was similar. She identified the socks as “snakes” and became hysterical. Her failing cognitive abilities did not allow her to stop and think, “Wait a minute. What else might they be?” Lenard’s cognitive abilities were also failing. Unlike Gary, he was unable to tell that the dog he saw wasn’t real.
If there is little cognitive involvement, the optometrist may be the first doctor to see a person with early LBD. However, few are trained to be alert for such problems or to connect them with LBD when they do recognize them. Do your part and share this blog along with a copy of the LBDA brochure with your optometrist. You can download the brochure for free from http://lbda.org/content/lbda-brochure but it does require legal size paper. You can also use the following link to order ten or more brochures by filling out a contact form. http://lbda.org/?q=contact
For more information about Lewy body dementia, read our book, A Caregiver’s Guide to Lewy Body Dementia, available in the LBD Book Corner on our website, LBDtools.com, along with many other LBD-related books.
The occipital lobe at the back of the brain is particularly important for processing visual information, that is, for making sense of what we see. Lewy bodies often migrate to that area of the brain and when they do, visual perceptions can be affected. The following problems can all occur long before any cognitive issues become serious:
- depth perception (Annie’s step up),
- hand-eye coordination (Janice’s spilled coffee),
- light sensitivity (Charles blinking) and
- double vision (Laura’s “cataracts”)
- blurred vision (also Laura’s cataracts")
- illusions (Harold’s pillow-cat)
- hallucinations (Gary’s little black dog)
When failing cognitive abilities become involved, the problems can become more difficult. Ray kept using other receptacles for the toilet—a flower pot, the laundry basket, even the corner of the closet and was confused when his wife got angry at him. Marge saw socks on the sofa, thought they were snakes and started screaming. Lenard also saw a little black dog, but he believed it was real and had to be fed and even walked.
In Ray’s case he was seeing these receptacles as toilets. This didn’t seem odd to him because his ability to make judgments had already been affected. He didn’t think, “What an odd place for a toilet.” He just used it. Marge’s problem was similar. She identified the socks as “snakes” and became hysterical. Her failing cognitive abilities did not allow her to stop and think, “Wait a minute. What else might they be?” Lenard’s cognitive abilities were also failing. Unlike Gary, he was unable to tell that the dog he saw wasn’t real.
If there is little cognitive involvement, the optometrist may be the first doctor to see a person with early LBD. However, few are trained to be alert for such problems or to connect them with LBD when they do recognize them. Do your part and share this blog along with a copy of the LBDA brochure with your optometrist. You can download the brochure for free from http://lbda.org/content/lbda-brochure but it does require legal size paper. You can also use the following link to order ten or more brochures by filling out a contact form. http://lbda.org/?q=contact
For more information about Lewy body dementia, read our book, A Caregiver’s Guide to Lewy Body Dementia, available in the LBD Book Corner on our website, LBDtools.com, along with many other LBD-related books.
Saturday, December 7, 2013
Visiting a Loved One with LBD
Usually these blogs are for the caregivers. This one is for family or friends who want to visit a loved one who is living in a care facility.
If you don’t prepare for your visit, it can be frustrating and even heartbreaking. Your loved one may not recognize you and they may talk very little. It would be easy to think that a visit is not very helpful. However, visitors do make a difference.
As the disorder progresses, the goal of the visit must also change. You may no longer be able to connect with your loved one as someone that they remember. However, you can still connect with them as someone who cares.
Plan your visit for a time when your loved one is most likely to be clean and comfortable. Check with the facility or caregiver to find out what time is best.
Pain can appear as negative behavior—aggression or withdrawal, for instance. It will also increase LBD symptoms such as hallucinations and delusions. If you notice such changes, ask the caregiver or staff about pain management. Be aware that for the person with LBD, pain management is often difficult because the drugs that fix the pain may make the LBD symptoms worse.
Be careful of the way you talk. Talking down will increase agitation. Just chat away. Don’t worry about if they know who or what you are talking about. But do remember to talk slowly. Processing times for your loved one are very slow. Allow pauses between sentences. This may seem awkward for you but it will flow much better for your loved one. You will notice that after talking this way for a while that you become more relaxed as well.
For more information read A Caregiver’s Guide to Lewy Body Dementia, available at Amazon.com. Order it through our website, LBDtools.com and help us spread the word about this disorder.
If you don’t prepare for your visit, it can be frustrating and even heartbreaking. Your loved one may not recognize you and they may talk very little. It would be easy to think that a visit is not very helpful. However, visitors do make a difference.
As the disorder progresses, the goal of the visit must also change. You may no longer be able to connect with your loved one as someone that they remember. However, you can still connect with them as someone who cares.
- Come prepared with supplies that might help with the interaction:
- A family photo album is usually a hit. The past always easier to remember!
- Gifts that provide comfort via the senses will be appreciated long after other gifts loose their attraction. Examples might be some flowers from your garden, a DVD with soft music, a favorite perfume or aftershave, unusual textures such as a soft afghan or a smooth, cool stone. Bring a scented sachet but avoid candles. The open flame could be dangerous.
- Bring a favorite food or drink not usually available in an assisted living setting. My mom loved oyster stew. I'd get a to-go cup from a restaurant that we used to go and bring it to her. Someone else might crave Fritos or chocolate covered cherries.
Plan your visit for a time when your loved one is most likely to be clean and comfortable. Check with the facility or caregiver to find out what time is best.
Pain can appear as negative behavior—aggression or withdrawal, for instance. It will also increase LBD symptoms such as hallucinations and delusions. If you notice such changes, ask the caregiver or staff about pain management. Be aware that for the person with LBD, pain management is often difficult because the drugs that fix the pain may make the LBD symptoms worse.
- Often the best gift you can give are things you can do with your loved one:
- Hold their hands, put your arm around them or give them a back rub. A person doesn’t have to recognize you to appreciate these caring and nurturing activities.
- Offer to brush their hair or apply lotion to their skin while you visit. These have a soothing affect.
- Try wrapping their hands or feet in a hot, wet towel for a very soothing and relaxing “spa treatment.”
- Open a window to feel a breeze, or better yet, take your loved one for a walk outside. This is especially welcome if they don’t get out much. I used to push my mother in her wheelchair around the block. It was a wonderful change of scenery for her.
Be careful of the way you talk. Talking down will increase agitation. Just chat away. Don’t worry about if they know who or what you are talking about. But do remember to talk slowly. Processing times for your loved one are very slow. Allow pauses between sentences. This may seem awkward for you but it will flow much better for your loved one. You will notice that after talking this way for a while that you become more relaxed as well.
For more information read A Caregiver’s Guide to Lewy Body Dementia, available at Amazon.com. Order it through our website, LBDtools.com and help us spread the word about this disorder.
Friday, November 22, 2013
Lewy Body Dementia and Eating
Along about this time of year we all think a lot about eating—it’s become a Thanksgiving tradition to have a big meal and eat too much. But our loved one with almost any kind of dementia and certainly with LBD often have problems eating even a small meal. There are many reasons for this:
Everything is slower. It takes a lot more time for a PwLBD to choose what on their plate to eat, put it in their spoon and move it to their mouth. Lewy bodies makes everything smaller too—steps, movements, voice, and the bites a person takes. This makes eating an even slower process. A person with LBD may have just started eating by the time everyone else is finished and then they are “done” too.
When muscles get weaker, eating becomes hard work. Think about what it would be like to lift some stones that are just a little too heavy for you. The first stones would be fairly easy. You’d just need to exert a little extra effort. Of course, that is tiring. And as you get more tired, the task gets harder. And finally, it just wasn’t worth the effort. That’s the way it is for someone with weak facial muscles.
Lewy bodies take away the ability to smell, often well before dementia shows up. (In fact, one symptom of approaching dementia is the “return” of smell in the form of olfactory hallucinations, usually bad smells.) Eating becomes less fun because this loss of smell affects taste and things that used to be favorite treats may not be anymore.
Swallowing can be affected so that it becomes very easy to choke and aspirate—draw food into the lungs. While your loved one may forget a lot they don’t forget negative things as easily. Thus, the fear of choking remains. They remember that when they ate or drank, they choked and became frightened.
As thinking abilities fail, immediate gratification remains but the ability to see cause and effect fails. Thus, with immediate rewards replaced by hard work and fear, your loved one sees little reason to eat.
Then add the poor depth perception and other visual problems that PwLBD are even more prone to have than PwAD. If you can’t see what you are supposed to be eating, how can you be expected to eat it!
But there’s help. In the Alzheimer’s Reading Room, Bob DeMarko suggests that it is as easy as 1,2,3: http://www.alzheimersreadingroom.com/
1. Use RED plates. This adds some contrast and makes the food easier to see, which can be quite important for anyone with the perception and visual problems common with LBD. People with dementia in general eat 25% more from red plates! (reference)
2. Be a guide. Your loved one will often mirror your behavior. Use this to help them re-learn to eat:
A good guide demonstrates how to eat each and every time (like it is the first time, every time). The good guide does this with a smile on their face and no words in their mouth.
Your loved one may find eating difficult or painful. If this is the case, you need to contact a doctor that specializes with such problems regularly. Speech therapists can also help.
Happy Thanksgiving, everyone!
For more information about dealing with LBD, read The Caregiver’s Guide to Lewy Body Dementia. Order it from Amazon via the LBD Book Corner on LBDtools.com and help us spread the word.
Everything is slower. It takes a lot more time for a PwLBD to choose what on their plate to eat, put it in their spoon and move it to their mouth. Lewy bodies makes everything smaller too—steps, movements, voice, and the bites a person takes. This makes eating an even slower process. A person with LBD may have just started eating by the time everyone else is finished and then they are “done” too.
When muscles get weaker, eating becomes hard work. Think about what it would be like to lift some stones that are just a little too heavy for you. The first stones would be fairly easy. You’d just need to exert a little extra effort. Of course, that is tiring. And as you get more tired, the task gets harder. And finally, it just wasn’t worth the effort. That’s the way it is for someone with weak facial muscles.
Lewy bodies take away the ability to smell, often well before dementia shows up. (In fact, one symptom of approaching dementia is the “return” of smell in the form of olfactory hallucinations, usually bad smells.) Eating becomes less fun because this loss of smell affects taste and things that used to be favorite treats may not be anymore.
Swallowing can be affected so that it becomes very easy to choke and aspirate—draw food into the lungs. While your loved one may forget a lot they don’t forget negative things as easily. Thus, the fear of choking remains. They remember that when they ate or drank, they choked and became frightened.
As thinking abilities fail, immediate gratification remains but the ability to see cause and effect fails. Thus, with immediate rewards replaced by hard work and fear, your loved one sees little reason to eat.
Then add the poor depth perception and other visual problems that PwLBD are even more prone to have than PwAD. If you can’t see what you are supposed to be eating, how can you be expected to eat it!
But there’s help. In the Alzheimer’s Reading Room, Bob DeMarko suggests that it is as easy as 1,2,3: http://www.alzheimersreadingroom.com/
1. Use RED plates. This adds some contrast and makes the food easier to see, which can be quite important for anyone with the perception and visual problems common with LBD. People with dementia in general eat 25% more from red plates! (reference)
2. Be a guide. Your loved one will often mirror your behavior. Use this to help them re-learn to eat:
- Set a place for your loved one and one for yourself right across from them, in their direct line of sight. Put food on both plates.
- Sit at your place, look directly at your loved one and SMILE. Don’t say anything.
- Still without talking, take a bite. Chew. Smile.
- Take another bite. Chew. Smile.
- Take your time. Chew slowly. Be patient.
- Just make eye contact, eat and smile.
- Cajoling does not work with a person who cannot relate to reasoning.
- Talking about other things is distracting.
- Just make eye contact, eat and smile.
- Be patient. Be VERY patient and wait for them to follow your lead.
- This process may take several sessions.
A good guide demonstrates how to eat each and every time (like it is the first time, every time). The good guide does this with a smile on their face and no words in their mouth.
Your loved one may find eating difficult or painful. If this is the case, you need to contact a doctor that specializes with such problems regularly. Speech therapists can also help.
Happy Thanksgiving, everyone!
For more information about dealing with LBD, read The Caregiver’s Guide to Lewy Body Dementia. Order it from Amazon via the LBD Book Corner on LBDtools.com and help us spread the word.
Friday, November 15, 2013
Making Holidays Fun
The holidays can be a difficult time for anyone with dementia. Change is scary and so as home décor changes, it adds tension instead of peace. Visits from family and friends can be overwhelming and tiring. For someone with Lewy’s sound and vision sensitivities, it can be even more difficult. Bright tree lights may be painful instead of fun. Loud music may be more stressful than enjoyable.
This doesn’t mean you should not celebrate nor that family and friends shouldn’t visit. Here are some tips to make your holiday season more enjoyable.
Strange places and too many people are both stressful. Therefore, forgo parties and large dinners that include your loved one. Instead, encourage family and friends to come visit—a few at a time.
Time visits for when your loved one is most alert. It is common for them to display “Showtime” (be unusually alert) with family, especially with those they do not see all the time. Enjoy this but expect them to crash and be very tired afterwards. Showtime is hard work!
Utilize respite care or adult day care to give you some free time for errands. If you do take your loved one out on an outing, plan ahead, avoid crowds, make sure it is something well loved, and don’t be gone a long time.
Play soft, soothing holiday music. Music has a different path to the brain and people can remember it when they can’t remember other things. Remember that music played too loud may be distracting and stressful.
Variety and change are no longer fun; sameness feels much safer and more comfortable. Therefore, don’t overdo the decorating. Keep your home looking and feeling familiar.
Get your loved one involved in the holiday preparations. Repetitious activities that are tedious for others are soothing for someone with cognitive impairment and can stroke feelings of accomplishment and pride. Enlist the help of older grandchildren and make this a family activity.
String garlands. All that’s needed is a long heavy thread and a darning needle. Try stringing cranberries, popcorn, even O-shaped cereal (Fruit Loops are cheerfully colorful). Extend the enjoyment by hanging edible garlands outside a window to attract birds.
Make paper chains. This takes some dexterity. It may be that a child can supervise while your loved one helps as able. Use construction paper, or even heavy foil wrapping paper.
Make pomanders. (aromatic balls) Stick cloves into oranges. These make lovely hangings or bowl displays and their scent may evoke calming, happy memories. Again, these require a little dexterity, but not much. Remember to throw them away after the holidays.
Crack nuts. Put your loved one to work with an old-fashioned nutcracker and a big bowl of walnuts, pecans and Brazil nuts. The ability to separate nuts from shells will depend on how much sequential ability is left. This may be another chore best done with a grandchild.
And finally, give yourself the challenge of matching the tempo of your loved one. Release some of that holiday generated stress by slowing down. Think about all the things you can leave undone instead of all those that need to be done.
Thanks to Independence4Seniors.com for many of these ideas.
Read A Caregiver's Guide for Lewy Body Dementia for more help with Lewy body dementia. Find it at LBDtools.com
This doesn’t mean you should not celebrate nor that family and friends shouldn’t visit. Here are some tips to make your holiday season more enjoyable.
Strange places and too many people are both stressful. Therefore, forgo parties and large dinners that include your loved one. Instead, encourage family and friends to come visit—a few at a time.
Time visits for when your loved one is most alert. It is common for them to display “Showtime” (be unusually alert) with family, especially with those they do not see all the time. Enjoy this but expect them to crash and be very tired afterwards. Showtime is hard work!
Utilize respite care or adult day care to give you some free time for errands. If you do take your loved one out on an outing, plan ahead, avoid crowds, make sure it is something well loved, and don’t be gone a long time.
Play soft, soothing holiday music. Music has a different path to the brain and people can remember it when they can’t remember other things. Remember that music played too loud may be distracting and stressful.
Variety and change are no longer fun; sameness feels much safer and more comfortable. Therefore, don’t overdo the decorating. Keep your home looking and feeling familiar.
Get your loved one involved in the holiday preparations. Repetitious activities that are tedious for others are soothing for someone with cognitive impairment and can stroke feelings of accomplishment and pride. Enlist the help of older grandchildren and make this a family activity.
String garlands. All that’s needed is a long heavy thread and a darning needle. Try stringing cranberries, popcorn, even O-shaped cereal (Fruit Loops are cheerfully colorful). Extend the enjoyment by hanging edible garlands outside a window to attract birds.
Make paper chains. This takes some dexterity. It may be that a child can supervise while your loved one helps as able. Use construction paper, or even heavy foil wrapping paper.
Make pomanders. (aromatic balls) Stick cloves into oranges. These make lovely hangings or bowl displays and their scent may evoke calming, happy memories. Again, these require a little dexterity, but not much. Remember to throw them away after the holidays.
Crack nuts. Put your loved one to work with an old-fashioned nutcracker and a big bowl of walnuts, pecans and Brazil nuts. The ability to separate nuts from shells will depend on how much sequential ability is left. This may be another chore best done with a grandchild.
And finally, give yourself the challenge of matching the tempo of your loved one. Release some of that holiday generated stress by slowing down. Think about all the things you can leave undone instead of all those that need to be done.
Thanks to Independence4Seniors.com for many of these ideas.
Read A Caregiver's Guide for Lewy Body Dementia for more help with Lewy body dementia. Find it at LBDtools.com
Friday, November 8, 2013
Tests for MCI
More and more we are learning that the earlier LBD is identified, the better it can be treated. Then patients, families and physicians know avoiding Lewy-dangerous drugs, emphasizing a healthy lifestyle and focusing on lowering stress decreases symptoms. A diagnosis of mild cognitive impairment (MCI) is a reminder that these changes are also important dementia prevention tactics.
The research community has begun looking at neurological disorders much sooner too. Their challenge is to find signs of a disorder early enough to stop or at least decrease its progress medically. So far, they haven’t been very successful but they are getting closer. One thing they have done is to develop ways to identify MCI early on and even to tell the difference between the AD type (amnestic MCI or MCI-AD) and the LB type (non-amnestic MCI or MCI-LB).
In our 4/19/13 blog, I reported on a fairly new MRI test is now available to help physicians differentiate between several types of dementia, even at the mild cognitive impairment (MCI) level. Called the STructural Abnormality iNDex test (STAND) test, it provides a diagnosis similar to that of a highly skilled behavioral neurology specialist practicing in a large referral medical center. Thus a physician who sees only a few people with LBD a year can still diagnosis it as well as a neurologist who sees many such patients a year, as long as they have access to this test. The problem is that as yet, the STAND test is only available at large teaching or research centers where the specialists already are. Even so, it is worth asking for if you or your spouse/caregiver/family member see evidence of Lewy bodies.
A Lewy-savvy doctor can already identify the likelihood of MCI-LB during an office visit, using a battery of tests including the MMSE, below, and some drawings. The MMSE is given and scored with an emphasis on orientation. Then the patient is asked to a) draw a clock with a designated time showing and b) copy a picture of a cube. (Reference)
The Mini-Mental State Exam (MMSE), which takes only a few minutes in the doctor’s office has a good record of identifying dementia in general. It requires other tests to identify MCI-LB. While the SPECT test below is more accurate, it is not available in a doctor’s office as are the drawing tests above.
The single photon emission computed tomography (SPECT) test is a combination of CT and an injected radioisotope to produce a 3-D image of your brain. It has been found helpful in identifying LBD specifically even in early stages. The process requires special training for administration. While CT scans are available in most hospitals, radioisotopes have a short life and are therefore only available where they are manufactured, i.e., in large medical centers.
For more about LBD, read A Caregiver's Guide to Lewy Body Dementia, by Helen and James Whitworth. Available via our website, LBDtools.com.
The research community has begun looking at neurological disorders much sooner too. Their challenge is to find signs of a disorder early enough to stop or at least decrease its progress medically. So far, they haven’t been very successful but they are getting closer. One thing they have done is to develop ways to identify MCI early on and even to tell the difference between the AD type (amnestic MCI or MCI-AD) and the LB type (non-amnestic MCI or MCI-LB).
In our 4/19/13 blog, I reported on a fairly new MRI test is now available to help physicians differentiate between several types of dementia, even at the mild cognitive impairment (MCI) level. Called the STructural Abnormality iNDex test (STAND) test, it provides a diagnosis similar to that of a highly skilled behavioral neurology specialist practicing in a large referral medical center. Thus a physician who sees only a few people with LBD a year can still diagnosis it as well as a neurologist who sees many such patients a year, as long as they have access to this test. The problem is that as yet, the STAND test is only available at large teaching or research centers where the specialists already are. Even so, it is worth asking for if you or your spouse/caregiver/family member see evidence of Lewy bodies.
A Lewy-savvy doctor can already identify the likelihood of MCI-LB during an office visit, using a battery of tests including the MMSE, below, and some drawings. The MMSE is given and scored with an emphasis on orientation. Then the patient is asked to a) draw a clock with a designated time showing and b) copy a picture of a cube. (Reference)
The Mini-Mental State Exam (MMSE), which takes only a few minutes in the doctor’s office has a good record of identifying dementia in general. It requires other tests to identify MCI-LB. While the SPECT test below is more accurate, it is not available in a doctor’s office as are the drawing tests above.
The single photon emission computed tomography (SPECT) test is a combination of CT and an injected radioisotope to produce a 3-D image of your brain. It has been found helpful in identifying LBD specifically even in early stages. The process requires special training for administration. While CT scans are available in most hospitals, radioisotopes have a short life and are therefore only available where they are manufactured, i.e., in large medical centers.
For more about LBD, read A Caregiver's Guide to Lewy Body Dementia, by Helen and James Whitworth. Available via our website, LBDtools.com.
Friday, November 1, 2013
Two of a Caregiver's Best Friends: A Journal and a Support Group
“Now I’m supposed to keep a journal?” Claire, a fiftyish woman with a harried look asks incredulously. “As if I have time for that when I’m doing all these other things I have to do. I don’t understand why Leon can be so like a two year old, getting into everything and so dependent I can’t even go to the bathroom alone and then when we go to the doctor, he’s just fine. No wonder the doctor doesn’t do much. Why does Leon do this? I get so mad at him. Why can’t he be that sharp with me? Is the doctor more important to him than I am?”
“Of course it isn’t just the doctor. He did the same thing when his daughter, Julia, came to visit. I’d been telling Julia that I was at my wits end with her dad. That I needed her to help me decide what to do about him. And so she came to visit him. Guess what? Now she thinks I’m bored with her dad and that I want my freedom without the hassle of a divorce. ‘Or why else would you want to put away such a gentle old man?’ she asked me. Gentle? He got so angry at me the other day that I thought he was going to hit me. He was sure I was setting up a date with some guy on the phone. It was a perfectly innocent discussion with a salesman but I couldn’t convince him of that. He remembers things like that, but he can’t remember from one minute to the next when I do something nice for him. Now he’ll probably tell Julia I’m running around on him. I’m at my wits end.”
Claire is dealing with fluctuating cognition, a hallmark symptom of LBD. It’s her first time at a support group and the group members have suggested that she keep a journal so that she can have a record of her husband’s fluctuating behavior. Her reaction is a common one. She isn’t receptive to adding another task to her already overwhelming caregiving job. Claire expresses many issues that new caregivers have:
Claire made a great first step towards understanding Leon’s disorder—she attended a support group. Often the members, who have experienced the same issues Claire has, can offer her more insight than the doctor can.
Their suggestion that she keep a journal is right on. She can use it:
“Of course it isn’t just the doctor. He did the same thing when his daughter, Julia, came to visit. I’d been telling Julia that I was at my wits end with her dad. That I needed her to help me decide what to do about him. And so she came to visit him. Guess what? Now she thinks I’m bored with her dad and that I want my freedom without the hassle of a divorce. ‘Or why else would you want to put away such a gentle old man?’ she asked me. Gentle? He got so angry at me the other day that I thought he was going to hit me. He was sure I was setting up a date with some guy on the phone. It was a perfectly innocent discussion with a salesman but I couldn’t convince him of that. He remembers things like that, but he can’t remember from one minute to the next when I do something nice for him. Now he’ll probably tell Julia I’m running around on him. I’m at my wits end.”
Claire is dealing with fluctuating cognition, a hallmark symptom of LBD. It’s her first time at a support group and the group members have suggested that she keep a journal so that she can have a record of her husband’s fluctuating behavior. Her reaction is a common one. She isn’t receptive to adding another task to her already overwhelming caregiving job. Claire expresses many issues that new caregivers have:
- She takes Leon’s fluctuating cognition personally. This is a hallmark symptom of LBD. A person can carry on an intelligent conversation one moment and be utterly confused the next. (See the x blog for more about this symptom)
- She doesn't understand the special “Showtime” aspect of fluctuating cognition where a PwLBD will act with clarity with someone other than the caregiver then revert back to his normal confused state when that person is gone.
- She still believes she should be able to reason with Leon.
- She doesn't understand that Leon will remember the things in his reality, especially the negatives like her “infidelity”, easier than he can those in her reality—the nice things she does for him.
- She doesn't understand that her agitation just makes things worse because he will mirror the intensity of her response.
Claire made a great first step towards understanding Leon’s disorder—she attended a support group. Often the members, who have experienced the same issues Claire has, can offer her more insight than the doctor can.
Their suggestion that she keep a journal is right on. She can use it:
- As an on-the-spot record of Leon’s fluctuating behavior that she can show to the doctor or family members to support her own words. Videos and audio recording work well for this too.
- to keep track of those behaviors like Leon’s delusions of infidelity so that she can discuss them at her support group. That way she can learn better ways of dealing with these than becoming hurt angry angry.
- to track Leon’s medications and their results. Because LBD is a progressive disorder, a person’s reactions to drugs will not necessarily continue to be the same. What once worked may now make symptoms worse, or may stop working at all or…
- to vent in a safe way—and perhaps be able to keep her cool with Leon, thus lowering his stress level.
- Can you think of other reasons for keeping a journal? I’m sure there are many!
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