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

Friday, May 26, 2017

Dopamine: For More than Mobility

About half of those dealing with LBD also have Parkinson's disease (PD). Anyone dealing with PD soon learns about the need for adequate dopamine.

Dopamine has several functions in the brain, including:
  • Facilitating mobility. This is the function that PlwPD are most aware of. Without adequate dopamine, symptoms such as slowness of movement, tremor and stiffness occur.
  • Reward-based behavior. Anything we consider a treat will increase the secretion of dopamine which facilitates positive emotions. Certain drugs also cause an increase of dopamine, which can make them addictive.
  • Executive functions. In the cortex of the brain, dopamine and acetylcholine play a delicate balancing act that is seldom a problem until cognition becomes an issue.
  • Pain management. In multiple areas of the brain, dopamine acts to decrease pain. Too little dopamine results in more pain, as in restless leg syndrome and an increases susceptibility to pain for PlwPD.
Drug issues. The body protects the brain with a barrier that prevents most substances from passing from the general blood stream into the brain. This is called the blood brain barrier (BBB). Dopamine by itself cannot cross the BBB and so doctors have to find ways around it.
  • Levadopa is a precursor of dopamine that can cross the BBB. Once it is inside the brain, it transforms into dopamine. While levadopa works well for mobility, its effect on mood is limited. Thus, depression is a common PD symptom not treated well with levadopa.
  • Cognition. When PD advances to PDD, with decreased acetylcholine levels, levadopa further interferes with the acetylcholine-dopamine balance and increases already present cognitive issues like hallucinations and slow thinking.
  • Dopamine agonists are drugs that mimic the action of dopamine and can cross the BBB. These drugs appear to have a better effect and may improve depression. However, when dementia is already present, they can increase cognitive dysfunction and compulsive behaviors.
Outside the brain, dopamine has many other functions. It regulates:
  • In the cardiovascular system and kidneys, dopamine acts to increase sodium and water retention, increase heart rate and constrict your blood vessels. Inadequate dopamine can cause low blood pressure and sluggish circulation.
  • In the pancreas, dopamine's job is to regulate insulin production. Too much insulin triggers the release of dopamine, which may also may find its way into the brain where it functions as a reward. Eating high carbohydrate "comfort food" is an example of eating to produce higher levels of dopamine.
  • In the immune system, dopamine retards lymphocyte activity, acting as a brake for when the immune system gets out of control and attacks healthy cells. Inadequate dopamine would result in increased levels of diseases such as arthritis.
  • In the GI tract, dopamine again acts as a brake, reducing gastrointestinal motility and protecting intestinal lining. Too much dopamine can cause constipation. Too little might cause diarrhea and sores on the gut lining.
And so the bottom line is that when a person has PD or PDD, any of these other issues may come into play.  (Reference) (Reference)

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD: person living with dementia
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
PlwD, PD, LBD, PDD, etc: person/people living with dementia
PlwPD, LBD, PDD, etc.: person/people living with PD, LBD, PDD, etc.
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For 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

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.

Friday, May 19, 2017

The 2017 Arizona Alzheimer's Consortium Conference

Yesterday we attended the annual Arizona Alzheimer's Consortium Conference. We started out on a rather negative note. We left in plenty of time to enjoy the advertised pre-session Continental breakfast. But, long story short, we went to the wrong place MILES away from the right one! By the time we finally arrived, the speaker had already started. At our age, such incidents always end with us asking ourselves, "Is this a sign of impending dementia?"

But on to serious stuff. This is a conference directed at scientists, which we definitely are not. It is also strongly focused on Alzheimers rather than LBD. Nevertheless, we always come away from this conference in a hopeful frame of mind. This wonderful group of nine Arizona institutions collaborate to do research that a single one would find difficult if not impossible, reaching out to other institutions in the country and the world as well. Every year, they have a special focus for their conference. Several years ago, it was actually Lewy body dementia and other less common dementias. Another year, it was caregivers. This year it was students. Most of the presenters this year were students and they were great.

Of course, much of what we heard went over our heads. But we did learn that there are some amazing minds out there working on learning how to identify Alzheimer's early on. That's exciting because what they learn about AD will be translated to others like LBD very quickly. Here are some highlights of the conference:

Precursors: Several presenters talked about trying to discover what the precursors of Alzheimers. They weren't looking at external things like toxins, but on changes in the molecules themselves and what they do to other proteins that turns them into the plaques and tangles of AD. What seems to drive the changes? How common are they? Which changed molecules are present in people known to be at risk for AD and which ones aren't? And so on. The idea is that if they can discover these precursors, then they can find a way to stop them. Further, r researchers can use the methods they develop to look for precursors of LBD and PD and other neurogenic diseases in the same way.

Drugs. Most of us are aware of the damage anticholinergics can cause for anyone with LBD or even at risk for LBD. There's also a lot of the research that shows that the elderly who use these drugs are at greater risk than those who don't. A young researcher (a high school student!!) reported on his findings that middle aged people (40-50 year-olds) who used anticholinergics are at low risk for dementia. This was a primary finding and needs a lot more research, but quite interesting! Another researcher reported on findings that antidepressants like Prozac are fairly safe to use with dementia and in fact, may retard the development of AD.

Clinical trials. One of the roadblocks to research is the need for participants. Naturally they need people with the disease but they need healthy folks too, for their controls. We'd recommend that everyone who can should sign up for the Alzheimer's Prevention Registry. We also learned about the GeneMatch program that they have to help researchers working at the gene level. If you are 55-75 years old, live in the US and don't have a diagnosis of cognitive impairment, you are eligible to sign up for this too.

Caregiver care. Finally, we talked to a group called H.O.P.E. for building Health, Optimism, Purpose and Endurance in family caregivers and people with dementia. We were so pleased to see such a caregiver-oriented program represented at this conference. Their focus for the conference was anticipatory grief...which anyone dealing with LBD knows about...or should. They recommended the book, Loving Someone Who Has Dementia by Pauline Boss. "It's the book every dementia caregiver needs to have. It helps you deal constructively with that ambiguous loss that happens as your loved one gradually disappears in mind but is still there in body." Yes! We agree. It's a book you need in your library.

Oh, and we did get something to eat besides the muffins that we stealthy nibbled on while listening to the first speaker. They had a great lunch buffet with lots of healthy food and some decadent little desserts. Interestingly enough, they also had sodas. Have you heard about the latest research that people who have just one carbonated diet soda a day are three (3!!) times more at risk for dementia? And there's more research showing that drinking sugary sodas is linked to dementia too. Scary, huh? (More about this later.)

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD: person living with dementia
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
PlwD, PD, LBD, PDD, etc: person/people living with dementia
PlwPD, LBD, PDD, etc.: person/people living with PD, LBD, PDD, etc.
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For 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

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.

Saturday, May 13, 2017

Helpful Sites for Care Partners

We recently received two lists of links of for care partners that we believe are worth passing on. The first is from Natalie Kelly, who represents a group of educators and librarians called Forever Curious. The commentary is mine:

Transportation Resources for Older Adults
A very thorough brochure from always helpful Eldercare.gov that lists many suggestions for tranportation once a person can no longer drive. It also lists some agencies to contact for more suggestions in your area.

Selling a Home with Modifications for Older Adults
This valuable group of articles offered by Home City Real Estate are about so much more than selling a handicap-modified home. Anyone with a loved one whose daily living skills are challenged living at home needs to read this. It covers the types of modifications a person can do to make living easier, how these modifications will affect resale value in different areas of the country and how to do these modifications to avoid damaging resale value.

Fall Prevention
A brochure from the National Council on Aging that offers lists of programs to prevent falls by area and several lists on tips for preventing falls. The information is good but the links require patience--they are slow to load.

Assistive Technology Buying Guide
This extensive list of articles was compiled by RetailMeNot for their online shopping advisor, The Real Deal. They accurately advertize it as "Everything you need to know for buying assistive technology smartly." The articles cover everything from what is Assistive Technology and the equipment involved to where to find the best deals, and even how to get at least part of the cost covered. A great read before you buy any of this kind of equipment.

Special Needs Seniors: Planning for the Future of this Vulnerable Population
Retiring Wise is a blog by OneReverseMortgage of Quicken Loans. This particular blog entry discusses financial, medical, communication, and other concerns that seniors face as they age, with an extensive list of links to national, state and private agencies that offer assistance. This article also addresses the advantages of planning ahead, with information about Special Needs Trust, Long Term Care Insurance, and other things to consider early on. A must read, the earlier in the dementia journey the better.

Legal Guide for Newly Disabled Seniors
This article by Just Great Lawyers discusses the issues that every person with a disability and their care partner faces, including dealing with the change to being disabled, applying for services, protecting one's legal, financial and medical rights and more, with links galore for each subject. Every dementia care partner should read this no matter where they are on their journey.

Brain Support Network Blog
The second list comes from Robin Riddle and the Brain Support Network. I've written about their work in helping people donate brains, but now they have a blog that offers lots of information for care partners. Check it out. If you'd like to have the blogs emailed regularly to you, join their email list for LBD and general caregiving. Here is a list of some of the recent blogs:
* "Living Guilt Free" - notes from a one-hour talk
* "Respite Care: Finding and Choosing Respite Services"
* "Grieving Before a Death: Understanding Anticipatory Grief"
* "How do we cope with anger as a caregiver"?
* "13 Secrets That Make Caregiving Easier"
* Urinary problems in Parkinson's - webinar notes
* Complementary and alternative medicine in Parkinson's - webinar notes
* "Beyond Alzheimer's Disease" (including LBD) - webinar notes
* Overview of LBD symptoms and treatment - webinar notes
* Johns Hopkins Overview of Dementia with Lewy Bodies
* Five E’s of empowered living with chronic illness

Happy reading!

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD: person living with dementia
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
PlwD, PD, LBD, PDD, etc: person/people living with dementia
PlwPD, LBD, PDD, etc.: person/people living with PD, LBD, PDD, etc.
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For 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

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.

Friday, May 5, 2017

The Value of Exercise

We've all heard and read about how exercise is so important as we age, and how it continues to be important for anyone dealing with dementia, both the PlwD and the care partner. Exercise increases blood flow...and oxygen...to the brain, increasing general functioning. But there is so much more!

Exercise is a great stress reliever. It immediately increases the levels of serotonin, noradrenalin, dopamine and endorphins.
  • Serotonin is a feel good chemical that fights depression, common with most dementias, most chronic diseases--and most caregivers.
  • Noradrenalin improves awareness and increases the ability to focus. Apathy, inattention and a short attention span are common dementia symptoms, all involving awareness and focusing.
  • Dopamine facilitates small motor function and decreases depression. Dopamine is one of the chemicals targeted by Lewy bodies, making depression a chronic LBD symptom. (And of course, dopamine also facilitates small motor function, decreasing the tremors, slowness of movement and stiffness of PD.)
  • Endorphins are natural pain relievers. Dementia is mostly a disease of the elderly, who have other illnesses such as arthritis. However, traditional pain relievers are often not recommended due to gastric discomfort or drug sensitivities. And there's more yet! 
Exercise increases cognitive function. It immediately increases the level of Brain Derived Neurotrophic Factor (BDMF), a growth factor chemical that facilitates new brain cells and maintains long term growth.
  • BDMF increases a person's ability to maintain focus, or to switch their attention to something else. Most PlwD have a very short attention span unless they obsess, in which case, they can't stop easily.
  • BDMF may also increase a person's ability to access abstract thinking, allowing them to move out of the here and now and to imagine new situations, and to be more creative. (This hasn't yet been tested on people.)
Finally, research has shown over and over that regular exercise decreases the risk of cognitive dysfunction in the future. That is, it won't stop the dementia that's present, but it may prevent dementia from showing up in the future...and it may slow down any that's present. It doesn't really matter what kind you do. Just exercise. Do whatever type you enjoy most. Do it with the PlwD. Do it with family. Do it with friends. Do it by yourself. Just do it!

Thanks to Wendy Suzki for this information.

* Acronyms:
BDMF: Brain Derived Neurotrophic Factor
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For 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

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.

Friday, April 28, 2017

Dealing with Shadowing

One of the behaviors that can be very difficult for a care partner to deal with is shadowing, that is, constantly following, often very closely, and getting very anxious if the care partner goes into a different room, outside, or shuts the door to use the bathroom.

Charlie follows me everywhere. I can't even go to the bathroom by myself anymore. I hate it--it actually makes me feel claustrophobic. I tell him to stop, but he just ignores me. Marion

To deal with shadowing effectively, Marion needs to recognize the cause and address it. Like most BPSD, shadowing is driven by negative emotions: anxiety and fear. Charlie is not trying to irritate or control her. Address the fear, not the behavior! All of the suggestions in last week's blog on defusing negative emotions are applicable.

As Charlie's memory and perceptions become faulty, Marion becomes the one safe and known aspect in Charlie's life...his life raft in a sea of uncertainty. Anything she can do to maintain structure and stability will help. Last week's blog names several of these, such as establishing rituals and routines. In addition a care partner can:

Develop some alternative means of orientation such as identifying notes on furniture and doors.

Install white board for daily updates and messages so that the PlwD will be used to using these when calendars and clocks become useless. Using this can help to maintain orientation: "Today is Wednesday, June 1" or "I'll be at golf until 2pm."

Use distractions such as a favorite snack, a meaningful activity or looking at family photos. When the PlwD is past doing these, she can offer him a squeeze ball or a brightly colored scarf to hold, with a "Please hold this for me, honey."

Play recordings of the PlwD's favorite music or of the care partner speaking reassuring words.

Ramp up verbal reassurance and physical touching. Do this all day long, not just when the PlwD is hovering.

Try using an egg timer for short absences. Set the timer in front of the PlwD, and give them something to hold, like a book or a napkin. Say, "I'm going to the bathroom and I'll be back when the bell rings. Your job is to watch the clock." Don't say anything more--that is confusing! Set the timer and go. Make sure to maintain trust by being back on time! Then, reinforce: "See, I'm here even before I said I'd be back!"
If you still leave the PlwD alone, program a simple cell phone with your number on an easy dial button and give it to them before you leave. This will help the PlwD feel less isolated and deserted. (Even so, expect lots of calls...)

Marion also needs to take care of herself so that she doesn't radiate negative emotions that Charlie will mirror with increased shadowing. As care partner you need to:

Watch your attitude, and work to avoid your own negative feelings. "It's the disease, not my loved one" is a good mantra. So is "It's a symptom, not an intentional irritant."

Give yourself a time out if you begin to feel irritable, even if it is just turning your back or closing your eyes. Take a deep breath, repeat your mantra to yourself and then come back and give the PlwD a hug.

Build free time into your schedule, using the friends/family/daycare routines, the timer, white board and phone. Maintain routine and rituals religiously--for your sake, as well as the PlwD's!

Use some of that free time to attend a support group, and use it to vent and ask for help.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For 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

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.

Friday, April 21, 2017

Dealing with BPSD: Hallucinations

Last week's blog was about how to defuse negative emotions. That's an important basis for dealing with most behavioral and psychological symptoms of dementia (BPSDs).
  • These emotions often drive the resulting acting-out behaviors such as aggression or withdrawal.
  • Without these energy-robbing feelings, the PlwD has more personal reserves for dealing with the dementia symptoms themselves, such as hallucinations.
There are also ways to deal with each symptom as well. Today's symptom is hallucinations.

My dad, Hank, has LBD. Lately, he's been having a lot of hallucinations. Most of them are harmless and manageable--workmen in his house or on his property. But some aren't. How do I convince him that there really isn't a man in his house holding a gun to his head? He thinks I'm nuts when I tell him it isn't real. Someone suggested that I use a spray bottle to get rid of the hallucinations, but that didn't work. Dad just thought it was silly. His doctor suggested Namenda. I plan to research Abilify too. -- Maude

LBD tends to attack a person's thinking skills even before it affects memory. When Hank first started getting hallucinations, he may have known that they weren't real. But as his ability to think abstractly fades, he can no longer tell the difference between hallucinations and reality. They are HIS reality and he is stuck with them.The more Maude tries to convince him of HER reality, the more frustrated, hurt, or angry he will get. (Think about how you'd feel if someone tried to convince you that you didn't really live in your home. Sounds absurd, doesn't it? Insulting, even, for them to even think they could do this. Well, that's how Maude's father feels when she tries to spray away his reality. "How silly and insulting!" he thinks. Maude has tried some things that don't work well.

These is what you can do:
  • Ask if the people are bothering your loved one. If they aren't, they are not the one with problem. YOU are. Relax. Let it go. Learn to deal with the hallucinations by accepting them as a part of the disease. (See previous blogs on hallucinations and delusions.)
  • Be willing to join the PlwD's reality and "play along" enough to get rid of an annoying or frightening hallucination. (See previous blogs on improv theater.) Do more or less what you would do to get rid of the situation if it were real. For instance, Maude can tell the man to take his gun and leave. Stand at the door and usher him out. Close the door. (Understand that this just takes care of this time. The "man with a gun" can show up again. Even if you took the gun away, her dad wouldn't remember that.)
  • Do consider dementia drugs like Aricept, Exelon, Razadyne and Namenda. They address more than just cognition. If your father also has Parkinson's, ask his doctor to review his PD drugs. They can also cause hallucinations. But your accepting attitude will help more than anything.
  • Be careful with antipsychotics like Abilify. Research shows that while it is not as dangerous for a PlwD as Haldol, it is more dangerous than Seroquel and about as dangerous as Resperdal, Zyprexa and Geodon. All of these drugs except Haldol are "second generation" antipsychotics often prescribed for BPSDs. All of them should be monitored very carefully to assure that they don't cause more problems than they solve. (reference)
  • Do take care of yourself. The PlwD mirrors your feelings. A calm, healthy, happy caregiver means fewer dementia symptoms, including hallucinations. (See previous blogs on dealing with emotions and on caregiver care.)
Future blogs about dealing with BPSD will be on shadowing and being in the moment,

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For 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

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.

Saturday, April 15, 2017

Defusing Negative Emotions

Last week's blog was on emotions in general. If you haven't read it, or the previous one on thinking, please do so before you continue. Emotions are usually either negative or positive. The stronger negative emotions drive evasive behavior--often acting out behavior. The more subtle positive emotions bring comfort and peace. The goal is to avoid or defusing the negative emotions while encouraging the peaceful ones.

Negative emotions include anxiety, anger, confusion, frustration, fear. As dementia progresses the ability to judge more or less decreases and so a PlwD tends to feel most emotions at their highest level. I'm not just a little frightened; I'm AFRAID. I'm not sort of anxious; I'm FILLED WITH ANXIETY. I'm not irritated; I'm ENRAGED. The longer my feeling lasts, the more intense it gets. These are the feelings that drive the behavioral and psychological symptoms of dementia (BPSD). Therefore, it is in everyone's best interest to avoid triggering these feelings whenever possible, and to defuse them quickly when they do occur.

Negative emotions are usually a response to stress. The problem is that the PlwD may no longer be able to connect cause and effect--this requires abstract thinking. Thus, they may not know why they are acting angry, or frightened. Thus, the care partner's job is to recognize and avoid such stresses whenever possible and to end them as quickly as possible when they do happen.

You can't use reason or time-related solutions. Dementia takes away a person's ability to reason and which requires abstract thinking. It also keeps them in the here and now--they don't understand "later." But there are many things you can do. Start preparing as soon as you have a diagnosis...or sooner! Don't wait until the PlwD's abstract thinking is all gone to start.
  • Add structure to the PlwD's life by establishing daily and weekly routines and rituals. Structure promotes positive the feelings of comfort and safety and limits negative feelings of confusion and fear. The sooner in your journey you do this, the easier it will be to do.
  • Routines should include events that encourage sociability such as visits from family and friends (one at a time). Start adult daycare before it is needed, so that it can be accepted and even enjoyed.
  • Routines should also include meaningful activities, such as folding clothes, doing dishes, working jigsaw puzzles or playing a card game.
  • Add simplicity. Remove clutter, unnecessary knickknacks and furniture. Like structure, simplicity replaces confusion and fear with feelings of comfort and safety.
  • Develop a play list of the PlwD's favorite music. Music is very calming and thereuptic.
  • Learn what things are most likely to cause negative emotions for the PlwD, and avoid these whenever possible. (These will be different with each person. Dave may be afraid of dogs, Mary may get upset when she is rushed, June may do very poorly in crowds.)
In the present:
  • Continually use verbal reassurance. "I love you. You are safe. Everything is/will be OK." Compliments and positive messages need to be voiced over and over to be really effective. (It takes 6--or more--positives to counteract a negative.)
  • Practice hugging and loving touch. (Custodial touching doesn't count. That is, helping them onto the toilet, into a chair or into bed don't count. The touching needs to be volunteered because you want to, not because you need to. (Remember the 6 to 1 rule.)
  • Maintain routine and rituals religiously. Always have friends in on the same day at the same time. Always make folding clothes, or doing dishes, or whatever, the PlwD's job. Always ...
  • Make no unnecessary changes of furniture or decor. Replace old clothes with similar ones. Don't offer "new" foods. Variety is no longer fun!
  • Recognize acting out as a stress-related response, and look for the trigger, then deal with that, not the behavior.
  • Use music as much as you can, starting with that play-list of favorite songs, and going on to others that the PlwD enjoys. Music in the house is soothing and brings about positive emotions.

Finally, take care of yourself. An overextended, sleep-deprived, ill, or unhappy caregiver is a strong stressor for the PlwD. They will mirror your feelings and add their own feelings of inadequacy and fear of desertion. (See other blogs on caregiver care.)

Next week, we start talking about using your knowledge about emotions with specific symptoms.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For 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

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.