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

Friday, May 25, 2018

Constructive Caring, #2: Identifying the Roadblocks

The first blog of this series was about the many advantages of being a positive care partner. However, that isn't always easy, as any care partner knows.
  •  Living with negativity can be like being is high on a mountain, where there isn't enough oxygen, the path is steep and rocky and the weather is so bad that you can't see more than a few feet in front of you.
  • Every step you take is scary and every step gets harder because you are getting more and more tired. But you feel stuck. You feel like you just have to keep climbing. 
  • But you don't. Once you recognize your power of choice, you can stop, make a conscious choice to be positive and head back down the mountain. 
  • The weather will get better, your path will be less steep, the scary rocks will turn to gravel and your energy level will improve. 
  • Being negative uses up your energy and makes you feel tired and hopeless. The longer you stay negative, the harder life gets. 
  • In contrast, the longer you stay positive, the easier life gets. You literally do have more oxygen, for example. You still have the same tasks but they seem easier and more doable.
This blog discusses some of the roadblocks that keep you from getting down that mountain where positivity makes life easier.

Roadblock #1: Stress. Choices, especially conscious choices require abstract thinking. That's something we learn to do as we grow up and use all the time without even realizing it. However, when you get so caught up in caregiving that you become stressed and overwhelmed, you lose the ability to think clearly or be flexible.
  • These stress-related, dementia-like symptoms immobilize you and keep you stuck making the same choices you've been making, even when what you are doing becomes continually harder and less rewarding. 
  • You will likely need help to escape the stress/negative thinking/more stress cycle. This is often a crisis of some sort. Sometimes, it is a confrontation from family or friends but all too often it is an accident, such as a loved one's fall or the care partner's injured back. 
  • Once you've decreased your overwhelming physical, emotional and mental burden, you can do other things. But getting help comes first. Care partnering is not a one person job. 
GET THAT HELP!

Roadblock #2: The company you keep. As humans, we tend to pick up and reflect the attitudes of those around us. Like yawns, both negative and positive emotions are contagious.
  • Round one: When the PlwD* loses the ability to make choices, negative thinking becomes their norm. As their closest companion, you will pick up and experience that negativity too.
  • Round two: An expert at perceiving other's feelings, The PlwD takes on your negative emotions as their own and mirrors them back to you, often as BPSD.*
  • Round three: You react negatively to the behaviors and it goes on and on, round after round.
But you have the power of choice! You can choose to interrupt this cycle.
  • Add positive people to your life, even if just online. 
  • With them as role models, you will find it will be easier to combat that immobilizing stress, think more positively and then feel better. 
  • The PlwD will mirror your positive feelings just like they did your negative ones and they will feel better too.
VIEW HAVING POSITIVE PEOPLE IN YOUR LIFE AS IMPORTANT AS GETTING THE RIGHT MEDICAL TREATMENT!

Roadblock #3: Isolation. Reaching out may not be all that simple, however.
 Caregiving is demanding in time and energy, and "adding positive people to your life" may take a back seat to the other jobs you have to do. Then, when you do, it isn't unusual to find that old friends or even family can't relate with the things that take up your attention or worse, that they don't understand.
  • And so you stop reaching out and isolate yourself that much more. It becomes easier and easier to feed into that cycle of negativity between you and your loved one. 
  • That's where support groups come in. If you are fortunate, you have family and/or friends that can be there for you in a positive way. But often, no, usually, you need more. 
  • You need to connect with people who are experiencing the same things you are and are still managing to be positive. Even if you have a hard time getting out, you can go online and connect with positive people there. Many care partners use both local and online groups. 
FIND A CAREGIVER SUPPORT GROUP AND PARTICIPATE.

Roadblock #4: Our basic negativity. Negative emotions are naturally strong. They need to be to get your attention in times of danger and push us towards safety. These stronger emotions can take over, especially in times of stress, requiring you to make conscious choices to change from being negative to being positive. The next blog is about how you change the way you think so that you can turn around and go back down that mountain of negativity.

*Acronyms:
AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia
PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

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 18, 2018

Constructive Caring, #1: Introduction

This is the first blog in a series about being a constructive care partner. At one time, I'd have said it was going to be about being a positive care partner, but times have changed. As researchers learn more, we learn to use different words. We all hear a lot about the value of being positive and it's all very true. Being positive makes you happier, healthier and even smarter. And, it makes you a more effective care partner. The more positive you are, the happier and more content your loved one will be.

But there's a glitch. Most people (80%) have brains hard-wired to be negative. Add the normal stress of caregiving, and even the few naturally positive care partners more likely than likely have negative brains. Telling a negative brain to "be positive" is too big a leap; it shorts out and goes into "worry," its default mode.

"Being constructive" is about working towards a goal, about gradually building a better life for you and your loved one, not a done deal like "being positive." That's our first work-around--watch for others! Negative people still have positive feelings--they just need noticing and nurturing. Sometimes, these get lost in the business of living, when the logistics of caregiving get in the way and the "fun" things aren't even noticed, let along enjoyed. (Reference)

The problem with negative emotions is that the brain views anything causing them as dangerous and therefore, urgent. These feelings grab our attention quickly and emphatically, overshadowing everything else. Then this "urgent" information gets pushed immediately into long term memory, bypassing much of the abstract thinking that keeps us on an even keel. Thus, negative thinking can be similar to that of the person living with dementia--and of stressed-out care partners: general, polarized, catastrophic, and personalized.

In contrast, equally important but non-urgent positives are processed slowly. Even after they get past those grabby negative emotions and manage to attract your attention, you have to keep them on your radar for over ten seconds to be remembered. A lot can--and does--slip by in that time. Work-around #2: Make a conscious choice to be aware of words, things, people and events that make you feel good. Once you notice them, make a conscious choice to pay attention to them and enjoy them.

"Why?" you ask. "Why should I spend my already limited time and energy on this? Why not just flow with it and accept the pain, the anger, the worry, the fear? Isn't that real life? Isn't it rather Pollyannaish to try to make it all more positive, uh, constructive?"

Ah, but Pollyanna was a happy person! The advantages of being happy are great for the individual and even greater for a dementia care partner because you are "feeling for two." That is if you choose to be happy, your loved one will mirror this and feel happier too. That's the first advantage, but there are a lot more:
  • Your loved one's happier, more content attitude will result in fewer dementia-related behaviors.
  • With less energy wasted on energy-hogging negativity, you will actually have more energy for your job, your loved one, others, yourself and life in general.
  • You will be healthier. Positive people are less at risk for most diseases, including dementia.
  • You will be less stressed, thus have more energy and clearer thinking.
  • With a clearer mind, you will see the broader picture and make better decisions.
  • You will accomplish more, resulting in better self-esteem.
  • You will feel emotionally stronger and better able to face the tasks you must do.
While caregiving can still be overwhelming, you will find it easier when you do it with a positive, can-do attitude. The more positive you become, the more others will enjoy being around you and you'll find that your positive attitude will rub off on them.

Next week: more about negativity and making conscious changes.

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.

We love and welcome comments but we will not publish any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures and marijuana.
*Acronyms
AD: Alzheimer's disease
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Friday, May 4, 2018

Dental Care

You may have noticed that your loved one isn't brushing their teeth so much anymore. Dental care is important for a variety of reasons. The bacteria from inflammation of the gums and dental plaque is linked with heart disease, pneumonia, stroke, diabetes, dementia and rheumatoid arthritis. It is important to maintain good dental hygiene and continue regular checkups. However, this can all become difficult and easy to skip.
  • If LBD* is involved, they may have forgotten the steps involved in brushing. "Do I put the toothpaste on the brush before or after I rinse it off?" "How do I brush?" "What do I do with all the fluid and foamy toothpaste that ends up in my mouth?"
  • Age, illness, some medications and dementia itself can decrease saliva output, creating "dry mouth" which can make toothpaste and mouthwash taste different, and possibly unpleasant. The efficiency of taste buds also fades with age, changing the person's taste preferences.
  • Your loved one may no longer understand the need for brushing and may not want to be bothered, especially since they may need to be helped to do it correctly. 
As you do with other activities of daily living, encourage the PlwD to do as much brushing and flossing as possible on their own and help only when you really must. Here are some tips that may help if you have to do the brushing:
  • Monitor your attitude. Make this as fun as you can and it will be much more pleasant for both of you. Try not to argue or be bossy. If, for instance, it feels awkward to do something so personal for a parent, get over it. The more comfortable you are, the more comfortable the PlwD will be--and the more accepting of your help.
  • To address the dry mouth issue, have your loved one rinse their mouth with water right before starting care.
  • Have them sit in a comfortable chair with you seated slightly behind them.
  • Use a soft toothbrush to gently but thoroughly brush their teeth.
  • Be careful not to tilt back the head when you brush. This can cause aspiration of liquid into the lungs.
  • An electric toothbrush is usually faster than doing it by hand and therefore, less annoying. If the noise of the brush or the vibrations produced by the fast-moving bristles is upsetting, you may have to revert to using a regular toothbrush.
  • Experiment with toothpastes and mouthwashes to find ones the PlwD likes. Brushing without toothpaste is still very effective. Mouthwashes help to control bacteria, but may irritate the gums. Try diluting the mouthwash with some water or else try another brand. Stop using mouthwash if it becomes an issue.
Thanks to Health After 50's article on Dementia Care: Oral Hygiene for most of the information in this blog.

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
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 27, 2018

Choosing Your Attitude, Part 4

This is the last in a four part series, Choosing Your Attitude for the Journey, by our friend, Pat Snyder, author of Treasure in the Darkness. The first week's blog was about being positive and being proactive. If you want to learn more about being positive, our own multi-series blog on the subject will start in May. The second and third blogs in this series were about being perceptive and being persistent. This week, it is about personifying the disease. We've often taught care partners the mantra "It's the disease, not the person," but Pat takes this a step--or more-- further. She makes some good points!

Personify the Disease

One of the most helpful decisions I made early in my Lewy Body Dementia journey with my husband was to personify “Lewy”. It had a huge impact on my grandsons as well as on John and me.

John’s neurologist, Dr. Daniel Kaufer, told us on our first appointment with him that preserving personhood was our key goal for John in all decisions about his care. That resonated with me. It became my touchstone when I had to decide what to do as various symptoms and events presented themselves in our journey.

In my mind, I separated John from his disease. I gave the disease a personal kind of name---Lewy. It gave me someone to blame, who clearly was at fault for whatever was happening. It gave me the power to separate John from actions or words he might do or say that were hurtful. “That’s Lewy talking right now. Just ignore it.” I could say that to myself and know that I was correct. John was not at fault. Truth was not being spoken. A clear enemy was in the room with us, and my job became how to outsmart that enemy. It gave me emotional distance so I could think clearly, problem solve better, and respond kindly to John.

I saw it as a kind of psychological and emotional warfare for a good purpose. Although my enemy was formidable, I still won significant battles along the way that made our overall experience of LBD less damaging to both of our lives. There was victory and empowerment in winning those battles. I was preserving personhood for John and for myself by personifying Lewy.

It also worked beautifully with our grandsons, who were young when John had LBD. When the oldest, Michael, was about five years old, he was chatting happily in the backseat of our car as we drove along a lovely country road.

All of a sudden, John barked at Michael harshly and told him he needed to be quiet.

Before I had time to think it through, I spoke up and said, “Michael, that is just that mean old Lewy talking to you right now. Your Pops would never talk to you like that. Pops loves you, Michael.” Fortunately, John responded with silence.

This caused me to begin using the “mean old Lewy” explanation with all the grandsons from that point on. I would tell them if they entered the room and Pops looked angry or spoke harshly to just leave the room right away. “That was Lewy, not your Pops. Wait a bit and go back to see Pops later.”

The boys all seemed to accept that explanation as making complete sense to them. It likely worked because it matched what happened to them. They would reenter the room later and find their sweet Pops happy to see them as usual.

Sometimes I would speak to John and remind him to be especially kind to the boys. We also tried to have only one child at a time in the room with John if he was agitated or tired.

Another example shows how personifying Lewy played out with John. One day John began to have trouble speaking. He babbled a kind of gibberish.

I touched his head tenderly and said, “Sweetheart, I can see that you know exactly what you want to say. Right now Lewy is messing with the connection between your thoughts and your ability to speak. Close your eyes, take a nap, and when you wake up you will be able to say whatever you want.”

John closed his eyes immediately and went to sleep. When he awakened, he was able to speak normally. That level of trust had been established over a period of years along with the habit of blaming Lewy when a bad symptom presented itself. John had learned that Lewy came and went, and he trusted me to point that out for him. It seemed to keep his anxiety lower.

Personifying Lewy gave the boys more of a sense of empowerment. They clearly stopped taking it personally when John’s disease made him appear mean to them. It also gave them someone to blame for what was happening. It made everything make more sense somehow for all of us while it protected John from the blame he did not deserve. Personifying Lewy enabled me to do a better job of separating the disease from my husband, thereby preserving his personhood while protecting my own heart from being bruised by some of Lewy’s antics.

The steps in the last four blogs (be positive, be proactive, be perceptive, be persistent and personify the disease) lay a foundation for a gentler journey. If you missed any, be sure to go back and read them. Pat finishes her class by telling her students that each step helps them stay ahead of the disease, have more control over their lives and make you a better caregiver.

Helen and James Whitworth are not doctors, lawyers or social workers, nor is Pat Snyder. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

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

* Acronyms:
AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia
PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Friday, April 20, 2018

Choosing Your Attitude, Part 3

This is the third in a four part series, Choosing Your Attitude for the Journey, by our friend, Pat Snyder, author of Treasure in the Darkness. The first week's blog was about being positive and being proactive. If you want to learn more about being positive, a multi-series blog on the subject will start in May. Last week's blog was about being perceptive. This week, it is about being persistent. Any gradually degenerating disease requires staying power. And if the disease is LBD, you need even more persistence as you deal with people who may know less about LBD than you do.

Be persistent.

Being an dementia caregiver is a long-term commitment. It is a marathon, not a sprint.

The term Lewy roller coaster for LBD folks has been coined to describe the experience due to the ups and downs in cognitive, physical, behavioral, sleep, and psychological symptoms. Your choice to be positive, proactive, and perceptive must be of a continuing, ongoing nature. You need to persist through these fluctuations as your Loved One progressively declines. It is a daily choice.

As new symptoms emerge over time, you will need to learn more and stay up to date about research and treatments that could be helpful. As your care continues, you will monitor disease symptoms daily. At times, you may question the efficacy of an intervention. Is the intervention working, or is this symptom simply a manifestation of the fluctuations of the disease? This is a typical question for you to ask in your role as care partner. Sometimes you will use your intuition correctly and change course. Other times you may not discover the answer. That is also typical, so do not blame yourself at these times.

You will also monitor those who are involved in your Loved One’s treatment and support. Part of your role is to teach any new person on the health care team about your Loved One’s expression of dementia. You may also need to teach them how to best approach the situations that arise in his care. You will deal with significant family members and friends who encounter him. All these things involve a consistent approach on your part. If your Loved One moves into a nursing home or similar facility, your role as advocate and educator will escalate.

Your steadfast persistence will pay off in a gentler LBD journey for everyone. This is one of those places in life where you clearly will make a difference. It is not easy, but it is doable -- and it is worth it.

Next week, Pat will talk about personifying the disease.

Helen and James Whitworth are not doctors, lawyers or social workers, nor is Pat Snyder. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

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

* Acronyms:
 AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia

PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Friday, April 13, 2018

Choosing Your Attitude, Part 2

This is the second in a three part series, Choosing Your Attitude for the Journey, by our friend, Pat Snyder, author of Treasures in the Darkness. Last week's blog was about being positive and being proactive. If you want to learn more about being positive, a multi-series blog on the subject will start in May. This week's blog is about being perceptive. A lot of this has to do with being empathetic, which is a subject we will cover thoroughly in our next book, coming later this year.

Be perceptive.

Be sensitive to the emotional and psychological impacts that dementia can have on you and your family. If left unaddressed, these things can have devastating physical consequences for you and your Loved One. They may determine how gentle the journey is for all of you. The diagnosis is likely to magnify any pre-illness emotional and interpersonal issues. Therefore, it is important to clearly identify those and learn how to manage them better. Doing this could provide significantly better outcomes for everyone. Consider including a counselor as a member of your health care team to help you address communication issues that need attention, relationship dynamics, and any pre-illness issues that can affect how you manage the symptoms of LBD, forgiveness of past hurts, and grief issues.

A second element of being perceptive is to be sensitive to your Loved One’s symptoms. You see him every day, unlike doctors who see him only for a short time during office visits. You need to observe and record changes in physical, psychological, and behavioral symptoms. Report these changes to the dementia specialist and work together to find solutions. Dementia patients may practice “Showtime” behaviors at doctor appointments, which make them seem to be much better than they are on a daily basis at home. Your report to the doctor keeps the information balanced, honest, and accurate. Sometimes changes in medicine can bring about an improvement of symptoms. At other times, non-drug choices can address these issues.

The third element of being perceptive is to identify the specific triggers that affect your Loved One’s experience of LBD in a negative way. This is where many non-drug interventions can have huge positive impacts on living daily with dementia.

Examples of simple changes with big impacts may be:
  • Softening the light in the room
  • Using oils like lavender to calm agitation
  • Playing favorite music
  • Having only one person speak at a time while in the room
  • Explaining what you are about to do before you begin to do it
These may seem like small things, but they can make a big difference in the person’s disease experience. You must be alert and perceptive to see what things trigger agitation or frustration. Then you can communicate with key individuals how those things must change in order to make the best care choices.

Helen and James Whitworth are not doctors, lawyers or social workers nor is Pat Snyder. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

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

* Acronyms:
AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Friday, April 6, 2018

Choose Your Attitude, Part 1

This week starts a series on attitude by our friend Pat Snyder, author of Treasures in the Darkness. This is one of the lessons in her caregiver classes (with comments from me in italics). She recommends five steps for the beginning care partner. Actually, any care partner can benefit from these steps, no matter where you are in the journey. These first steps lay a foundation for a more gentle journey. Each of them helps you to stay ahead of the disease so you have more control over your daily life. Each of them will make you a better caregiver.
  • Be positive
  • Be proactive
  • Be perceptive
  • Be persistent
  • Personify the disease
This week's Pat's steps are a) being positive and b) being persistent:

Be positive.

After your Loved One’s diagnosis of dementia you are likely to be overwhelmed with negative emotions. These emotions are your first hurdle to overcome, and they tend to be ongoing.

Therefore, a commitment to use positive choices to overcome negative feelings is a technique that will serve you well throughout your time as a caregiver.

Using a positive attitude to overcome a negative situation is not denial of it but a conscious effort on your part to override its impact. (I call this making a conscious choice...something you must do if you want to think positively.) There are a number of ways to address this choice of being positive. It takes self-discipline and commitment to fight back an enemy that is trying to steal precious moments from your lives. It often involves doing the opposite of what you are feeling in the moment. So first, identify that negative feeling. Then choose to go in another direction. For example, if you feel sad, try to spend time with a friend who makes you laugh. If you feel empty, make a list of three things for which you are grateful.

These kinds of choices may feel simplistic and artificial when you first start to practice them. Over time, you will feel the benefit of not allowing the negative emotions to swamp you, keeping you in a slump of inactivity and helplessness. You will begin to feel empowered and purposeful in your role. Then you will realize that your positive choices have a profound impact on your Loved One’s experience of dementia. (Pat presents a great introduction to being positive. Look for a multi-part series on the subject, coming later in May.)

Be proactive.

You need to take action and not just react to what happens. Being proactive is an ongoing requirement. As you begin to assume your role, these actions will empower you:
  • Learn about dementia symptoms.
  • Learn about treatments for LBD symptoms.
  • Learn about non-pharmacological (non-drug) interventions.
  • Learn to identify the specific triggers that affect your Loved One’s experience of LBD.
  • Find the right doctor who knows how to treat LBD
  • Connect with other LBD caregivers to continue strengthening yourself.
When your Loved One received the diagnosis, you likely also received some printed materials that defined LBD and directed you to some helpful resources available in your community. However, you will need to seek out more in-depth knowledge in order to fulfill your role as the caregiver.

Do not overwhelm yourself in the beginning. Learn about the basics and gradually add more knowledge. It is important to get information from reliable sources. Use only trusted print and non-print resources. Look at the websites of government agencies, universities, hospitals, and associations like LBDA. Find medical journals, articles, and books written by experts and online support groups that offer reliable information and social support. Search for the right doctor who specializes in LBD care or who is willing to learn about proper treatment for this challenging and complex disease. Do not settle for one who does not respect you as the key member of the care team. (If you must choose between a Lewy-savvy doctor who doesn't respect your participation and a less Lewy-savvy doctor who does, choose the latter. You can teach information but you can't do your job without respect!)

Next week is more from Pat: Be perceptive.

Helen and James Whitworth are not doctors, lawyers or social workers, nor is Pat Snyder. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

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

* Acronyms:
AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
LBDA: Lewy Body Dementia Association. LBDA.org is their website.
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia
PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.




For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia