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

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

Friday, March 30, 2018

Medical Treatment During End of Life

Our local newspaper recently carried two articles that highlight two different aspects of medical care for persons living with dementia (PlwD).*

The first described an experimental Medicare program being offered in a few cities including Phoenix, where hospice services will be offered to people who are seriously ill and still receiving treatment. They will be looking for results that show if this lengthens lives and saves money, by reducing emergency room visits and other acute care services.

One thinks first of the person receiving chemotherapy or radiation treatments, but what about heart medications or other life extending drugs? Wouldn't it be wonderful to have a compassionate (and free!) team of caregivers to help with dementia care without having to make the decision about whether to give up those drugs or not? Sometimes these "life extending" drugs can also be helpful, as with those that treat ever-so-painful pneumonia.

The other article discussed the practice of continuing to test seniors for problems like breast cancer well into their eighties, as long as the tests are not dangerous. "A loving daughter of a PlwD said, "Why not? I want my mother to have the best possible care." Of course she does. But are tests like mammograms good care for a person with a disease like dementia? We believe that imposing such an experience on a dementia patient is not good care for several reasons
  • First, many of the tests are scary or painful. Take a mammogram, for example. Every woman knows how uncomfortable these are. 
  • Because most PlwD wouldn't be able to understand why they were being mistreated, they could become combative and difficult to manage without possible dementia-sensitive drugs that they would not otherwise need.
  • The likelihood of finding a cancer that can be treated in  PlwD's lifetime is low.
  • Any treatment would probably make the dementia worse, cause major discomfort or both so that even if it extended the person's life, quality of life would be lower than it would have been without treatment.
Both of these articles address end of life issues. No one is a greater advocate of hospice and good care for seniors than we are. People need to start using hospice much sooner than most do. It would be wonderful if they didn't have to make a decision to stop life-extending drugs. It would allow people to consider using hospice services sooner--but when should the use of life-extending methods stop? As for testing, we all need to do what we can to maintain our health, and testing is often where that starts--but when is it more damaging than helpful?

There comes a time in dementia care when the focus must switch from extending life to enhancing it--to making it as comfortable as possible. And so, yes, as long as these life-extending measures do not decrease a person's comfort level, why not leave them in place? But the truth is that they often conflict with dementia drugs or limit a person's enjoyment in other ways.

For example, Jim (Whitworth) loves grapefruit but can't eat it because it conflicts with his heart medication. That's fine for Jim. He has many other enjoyments and doesn't miss this much. But if his chances for enjoyment were severely limited as they are for many with dementia, eating something he can still enjoy might top the list. Then would the drugs be worth keeping? Would he even want a less enjoyable life extended?

Family members who opt for treatment or tests that they hope will extend the life of their loved one with dementia are usually responding to their own needs, rather than the needs of their loved one. Step back, look at it all from the view of the person living with dementia, and then make the decision. What would you want if you were in their present situation? Not what they would have wanted when they were dementia-free, but now. That is the answer that counts.

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
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.

Sunday, March 25, 2018

Empathy and Dementia

This week's blog is an excerpt from our upcoming book about dealing with BPSD.*

empathy: An awareness of other people’s emotions, a key element in the link between one’s self and others.

empathy deficit: inability to feel empathy, which can appear as indifference or selfishness.

Empathy is what a person uses to try to understand another's feelings. As thinking fades, emotional sensitivity increases and the PlwD* becomes more aware of other's feelings. However, this doesn't mean they are more understanding. Emotional sensitivity and empathy are very different.

I had an argument with my daughter before I went to visit Joe in the nursing home. He picked up the anger I was still feeling and started accusing me of running around on him, calling me awful names and telling me to leave. -- Lisa

Once Joe identified the feeling he picked up from Lisa as anger, it became his own. His damaged brain found a residual fear of desertion that provided a reason for his anger. (Without the ability to comprehend "might" or "later", what he fears might happen in the future, HAS happened NOW in his mind.)

Empathy is a two-step process:
  • Affective empathy, a person feels another person's emotions as though they were their own. You experience this when you see a friend's painful toe and your perfectly healthy toe twinges in sympathetic pain.
  • Cognitive empathy, where a person uses abstract thinking to identifying those feelings as the other person's, and not their own. "She feels sad. I'd feel that way in her situation too."
Joe did affective empathy just fine. He picked up Lisa's anger and felt it. The problem was that he couldn't take the next step and identify it as hers, not his. Dementia makes everything personal.

I started crying and asking why he was trying to hurt me. He just yelled more and said, I was the one who was hurting him. I'm devastated. Joe was always such a gentle man and I used to be able to talk with him about anything and he'd understand and help me work through it. I miss that so! -- Lisa

Once a man of great empathy and wisdom, Joe is now unable to provide either. With only concrete thinking, Joe could no more put himself in Lisa's place and understand her pain than he could understand that his anger was really a reflection of hers.

Dementia keeps a person in the here and now and makes everything personal. What appears to be extreme selfishness is simply the inability--the inability, not the choice--to see anyone's view but their own. The concept of "I'd be angry, or sad, or hurt, if that happened to me" is just too abstract. One either is, or isn't. An inability to feel cognitive empathy is about twice as likely for people with early LBD than for a person with no dementia and increases as the disease progresses.

Takeaways:

Attitude: View your PlwD's uncaring attitude as a symptom of the disease. By accepting that understanding is no longer possible, it is easier to avoid being hurt.

Acceptance: Accept that your PlwD's responses are hard-wired and once made, cannot be changed. Accept that you CAN change and that you CAN choose how to respond.

Choice: Choose not to react out of pain, anger, hold onto resentment or see the PlwD’s lack of empathy as a failure on your part.

Action: Monitor your feelings and make an effort to show only positive ones around the PlwD, even in the face of accusations.
Action: Sympathize with their pain and move the action in a positive direction.

Self care: Use a support group to vent feelings that build up even though you understand intellectually that the PlwD's indifference is beyond their control. Use it to alleviate some of the loneliness you may feel too.

Action: Prepare ahead for social situations. One care partner made cards to hand out that read, "Please excuse Hank. He has a brain disorder that causes him to say things he normally wouldn’t. Our apologies.”

Treatment: Acceptance, with soothing responses if needed. Dementia drugs and non-drug remedies that relax and/or increase cognition can increase empathy temporarily.

We hope to have this book published before the year is over. You'll be hearing more about it as we go along.

* 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

References:


Eres R, et al. (2015). Anatomical differences in empathy related brain areas: A voxel-based morphometry study. http://www.frontiersin.org/10.3389/conf.fnhum.2015.217.00187/event_abstract

Heitz C, et al. (2015) Cognitive and affective theory of mind in Lewy body dementia: A preliminary study. http://www.ncbi.nlm.nih.gov/pubmed/25847396

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, March 16, 2018

Denial

The main topic at our monthly support group recently was about denial:

My dad, Evan, still thinks he can drive. My mom, Lydia, is just as bad. His license would have run out this month, but she managed to get him a year's extension. -- Chris

Evan's delusion is dementia-based. A dementia-damaged brain accepts the first information available about an event and runs with it. Evan has been driving for fifty years. He also feels that driving indentifies him as an adult male. His brain takes these two already present pieces of information and closes shop. It can't--not won't, but can't, accept any more information about this subject. Therefore, he firmly believes he can drive. "But Dad, you didn't even see that stop sign," just doesn't compute. Evan's denial is not a choice; his dementia has taken away his ability to process information about how his driving has deteriorated. In a similar fashion, he is unable to see that he is beginning to have other dementia symptoms.

Lydia's delusion is denial-based. Some people deal with their spouse's dementia by researching it and learning all they can about it. Others deal with it by denying that it is present and doing their best to ignore it. This denial is what Lydia had subconsciously chosen to do. Denial is actually a healthy short-term defense mechanism that buffers the immediate shock of something we don't want to happen. However, when a person clings to the denial, it can be destructive in many ways. It becomes a delusion, an irrational belief, often almost as strong as the dementia-based delusions.

Last week's blog was how stress-based delusions can made a care partner's life even more stressful. Lydia's denial is not so much stress-based as it is emotion-based. Negative emotions, such as Lydia's fear of dementia, often trump fact and cause a person to cling to the denial long after its job is done. Then it becomes destructive. For example, a person may not get the treatment they need.

Dad has been to a urologist, a gastroenterologist and a cardiologist. I've done my homework and know that all of the symptoms he has are related to LBD*, but they refuse to go to a neurologist and see if that is what is bothering him. -- Chris

Trying to find other answers for Evan's dementia symptoms, as Chris's parents have done, is a common way for Lydia to cling to her denial.

The cardiologist told us that all of these symptoms are related to his nervous system and that we should see a neurologist. I hope that I can make that happen now. -- Chris

Because LBD has so many non-cognitive symptoms, such "disease shopping" is easy to do. However, it can be dangerous because as each physician treats their specialties, they may make the LBD worse. Evan and Lydia were fortunate in their choice of cardiologist. Another one might have recommended the installation of a pacemaker. The added stress of the required surgery would likely have increased his symptoms and the pacemaker is seldom much help with the LBD-related low blood pressure on rising.

The difference between dementia-related delusions and denial-related delusions are that the later are not hard-wired. What usually happens is that makes it difficult to ignore the issue any longer. In Florrie's case, last week, it was a definitive diagnosis. It is possible that the same thing could happen for Lydia. The process has already started, with the cardiologist's message. This helped her to She has let down her defenses enough to accept a visit to a neurologist, something she has strongly resisted in the past.

Letting go of buffering delusions is a painful process and Lydia will need her daughter's support and understanding. Chris might also take her mother to her next support group, where she'd get even more support.

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
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, March 9, 2018

Stuck in Caregiver "Dementia"

I just read Florrie Munat's book, Be Brave, A Wife's Journey Through Caregiving, in which she tells the story of her six year care partnering journey with her husband, Chuck. I was impressed with her honesty as she shared how she'd been caught up in so much denial and "magical thinking." Intellectually, Florrie knew that Chuck's dementia was an incurable, progressive disease but emotionally, she could not accept that prognosis. She talked about how she felt that she must stand in the path of the progress of the disease, that she felt that if she did everything "right" she could stop it, change it, get their life back. Of course, this was a lost cause and so then she added guilt and failure to her other emotions.

Sadly, Florrie's story is not unusual. It is similar to that of many care partners, complete with denial, or as she calls it "magical thinking," gargantuan efforts, guilt and failure. No wonder care partners are so often burnt out and often die before their charges do!

When Jim and I talked about Florrie's story we began to look at it another way. Chuck wasn't the only one with dementia symptoms. Anyone who experiences extreme stress will also have dementia-like symptoms, not dementia itself, but the same symptoms that people with dementia have. Their thinking becomes inflexible, single-minded and obsessional.

When a person living with dementia (PlwD) has a delusion, they are stuck with it. Their limited thinking abilities do not allow them a second opinion. They must believe the delusion their brain has presented to them as fact. A care partner can explain, argue or defend but nothing will change the PlwD's belief, their reality.

In her stressful condition, Florrie's "magical thinking," caused her to believe beyond all doubt that she had to be with Chuck continually for him to be cared for properly. Even though many people whom she respected and whose advice she normally would have accepted told her to let go, to take some time for herself, she couldn't do it. It wasn't that she wouldn't. She literally couldn't.

Florrie's magical thinking was her reality and she was stuck with it just like a person with dementia is stuck with their delusions. Care partners learn that they cannot explain, argue or deny a delusion because this is their loved one's reality and it can't be changed; not by the care partner and not by their loved one. Likewise, you can't expect an overburdened, stress-out caregiver to understand the need to change their behavior. Suggesting this will simply increase their determination, adding feelings of loneliness and isolation due to your obvious lack of support for their "very necessary" efforts.

What usually happens is that something interferes. For Florrie, it was getting a definite diagnosis of LBD*, at which time she began to accept the invincibility of Chuck's deterioration and the fact that he'd never be able to live at home again. Often it is something more drastic, a fall, an illness, an injury of some sort, maybe to the care partner, maybe to their loved one. But something finally gets the care partner's attention and they have to accept that they can't do it all.

A month after Chuck's LBD diagnosis, Florrie was taking more time for herself and she was able to write in her journal that it was a privilege and blessing to take care of Chuck. When she let go of the full responsibility for something she couldn't control, it greatly reduced her level of stress. Then, unlike true dementia symptoms, her stress-related dementia-like symptoms decreased and she was able to enjoy life, and Chuck, again, but in a more accepting way.

Most people don't even want to consider the possibility of dementia before they have to. Denial is not only possible, it's the norm! But treat the need for self-care like insurance. When you buy a car, you don't plan to have a wreck, but you buy the insurance anyway. And you don't wait until you need it, because then, it's too late. You buy it as soon as you get the car, so that no matter what happens or when, you are protected.

It's the same with dementia. No one plans for their loved one to have dementia. But "buy the insurance." At the first hint that dementia might be in your future, start thinking about self-care. That's as important as finding out what kind of treatment is best for your loved one. Find out what you need to make routine to avoid caregiver burnout and put it into practice now even if you don't feel the need of it. These are the things like taking an hour for yourself that get lost, forgotten and dropped as the caregiving gets more demanding. By making your own care a priority right from the first and setting up routines to protect it, you will give your loved one a much happier, relaxed and just plain better care partner.

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
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

Friday, March 2, 2018

SLEEP – THE BODY’S HEALING TIME & HOW TO MAXIMIZE IT

This week, our Alternative Therapy Consultant, Regina Hucks, shares some ideas for using a variety of alternative therapies to help persons living with dementia (PlwD)get a better night's sleep. 

Problems with sleeping or late evening agitation are often a stage in dementia that eventually passes. Many people with dementia sleep more during the latter stages of the condition. Sleep problems are among the most difficult symptoms of dementia. Families and caregivers must be able to get adequate sleep themselves. Try to ensure regular periods of rest and regular breaks for yourself, as well as for PlwD.

Alternative Therapies benefit both the PlwD and their care partner:
  • Exercise, Grounding and Balance 
  • Essential oils that calm, promote sleep, alleviate pain and bring balance back into the daily / nighttime routines are natural and effective.
  • Music / Sound Therapy work with specific frequencies that affect brain function and can promote sleep.
Exercise, Grounding and Balance: It’s important that both caregivers and PlwD be balanced and grounded.Set up a daily routine, incorporating the following regime:
  • Try to make sure you both are getting enough exercise. Try taking one or two walks each day. If the PlwD is not independently mobile and confined to a wheelchair, by all means just getting them out into fresh air helps to ease and relax mind and body.
  • Find a place where there is grass and each day, preferably morning and late afternoon, go to this place and take off your shoes…yep yours and theirs! Allow the bare feet to sit on the grass or dirt. Walk around if you can. The earth resonates at a frequency that is highly beneficial to the body helping to ground and balance the body’s systems. This action impacts the sense of touch, sight and smell. The smell of fresh mown grass, rain, flowers and even dirt, to many, can be relaxing and grounding. Connecting to nature is very beneficial.
Essential Oil Therapies to calm, aid sleep or to calm and improve energy and focus.
  • Review the article on my blog regarding Touch Therapy / Massage Therapy for pictorial information on hand massages and determine what you want to accomplish. 
  • For sleep, use these techniques in the evenings or prior to an afternoon nap. 
  • To improve energy and focus, use them in the mornings or mid day depending on what you want to accomplish.
  • Consider scheduling a hand massage in the morning before an outside jaunt or just before an afternoon nap and most definitely in the evenings before bedtime.
  • Try a back rub before bed or during wakeful periods. Using this as a preventative measure helps to reset the body’s clock and get sleep patterns back on track.
The following is a list of Essential Oils that will serve to help reset the body’s timer for appropriate sleep cycles. Some should only be used at night and others during the day.

Please NOTE: Not all essential oils are alike and most purchased in stores contain chemicals that can be detrimental to topical applications and cannot be ingested. ALWAYS check the labels. Look for Nutritional Information on the label. The Essential Oils I have recommended here are safe, effective and are Certified Therapeutic Grade. Most are ingestible; use them for teas or for cooking. To read more about these oils, please click here.

If you have ANY questions about the safety or efficacy of these oils, please don’t hesitate to contact me at regina@lbdtools.com .  If you are asking for information, please include as many details about what you are seeking information for. The more I have to work with, the better the information I can give you. Also, remember to please include your email address.

The following Essential Oils can be used topically (hand or foot massage) and Aromatically (in a diffuser). Diffusing provides greater coverage and at night will help to induce longer periods of sleep.
If using topically, always use a carrier oil. I recommend Fractionated Coconut Oil in a ratio of 5 drops carrier oil to 3 drops Essential Oil, unless otherwise noted.
  • Lavender will calm but may also relax so much that you may want to relegate it to nighttime or nap times, to promote deeper sleep.
  • Balance  is excellent for daytime use and will promote improved physical balance as well as mental balance
  • AromaTouch is an exceptional oil blend that is a mild relaxer but also aids in eliminating pain. This can be used in the daytime and at night as an analgesic in place of aspirin, ibuprofen, Motrin and Tylenol. Side Note for Parkinson’s sufferers: Mix 3 drops Aroma Touch to 5 drops Fractionated Coconut Oil and spread down the spine starting at the base of the neck down to the tail bone. I have seen up to 8 hours relief from tremors.
  • Serenity  promotes deep relaxing sleep and is my absolute favorite for nighttime use.
  • Lemongrass. Fresh lemon grass is often added to teas or lemonade to promote relaxation and calmness. The scent can relieve anxiety and promote restful sleep among PlwD. Try diffusing it with other citrus scents like sweet orange to boost your loved one’s energy levels and mood.
  • Clary Sage is beneficial for PlwD. Added to a diffuser, it promotes better cognitive function and enhances mood. Blend it with other essential oils like Peppermint and/or Rosemary to create an herb-based scent that boosts memory and promotes a calmer, more optimistic mood.
  • Bergamot is a warm floral scent that reduces anxiety and stress and encourages a calmer, more relaxed mood. The flowers are often added to tea, including classic Earl Grey blends. Add one to three drops of the essential oil to the bath, a diffuser, or combine with an ounce of carrier oil to provide the soothing benefits.
  • Chamomile. Dried chamomile flowers are well known for their pain relieving and stress reducing properties. Add a few drops of chamomile essential oil to 5 drops of carrier oil, and use the blend for hand massages to enjoy the same calming benefits.
  • YlangYlang reduces anxiety, boosts mood, and promotes restful sleep, making it an excellent addition to your loved one’s bedtime routine. Use it in a diffuser immediately before bed to help your loved one fall asleep easily. If they are agitated, a short hand massage with ylang ylang essential oil in a carrier oil base can calm their mood.
  • Rosemary has been found to stimulate memory, making it one of the best essential oils to incorporate into a PlwD's aromatherapy blends. Combine with peppermint to stimulate cognitive function and increase energy, or blend with lavender to calm.
  • Peppermint is an invigorating scent that boosts cognitive function while encouraging feelings of calmness. Diffuse it in the morning to begin the day with relaxed energy, or diffuse it anytime a PlwD begins to feel tired or agitated.
FOR PAIN AT BEDTIME, try these analgesic remedies before resorting to pharmaceuticals and especially before using a sleeping drug.

Deal with the anxiety: Anxiety inevitably accompanies pain regardless of the type and relieving the anxiety first is half the battle.

Deal with the pain: Find out where it is and if it is Joint, Nerve, Muscle or Bone Pain. Use the following combination of Essential Oils based on what is needed.

PAIN RUB: (Joint / Nerve / Muscle)
  • Mix 3 drops Fractionated Coconut Oil with 1 drop AromaTouch in the palm of your hand and rub gently on the affected area.
  • Next, put 2 drops Serenity into the palm of your hand and rub over the affected area layering on top of the Aroma Touch.
  • (Additional carrier oil is not needed with the second layer unless the skin is exceptionally dry and it quickly absorbed the first layer.)
A PRE-MIXED ROLLER BALL FOR PAIN ANYTIME: (Joint / Nerve Bone)
  • A great addition to any medicine cabinet is a pre-mix roller ball called ‘Past Tense.”Originally designed to relieve headaches and neck and head tension (which is does), I have found this particular Essential Oil blend to be HIGHLY effective on joint, nerve and bone pains. Just roll on the affected area and gently rub in!
NIGHTTIME PAIN: (Joint, Muscle, Nerve, Bone)
  • Mix 3 drops carrier oil with 3 drops Lavender and 3 drops Peppermint. Rub on affected area
HERBAL TEAS and warm milk may be helpful.

SOUND THERAPY
  • Soothing high frequency music (these can be downloaded free from You Tube) ie:
  • https://www.youtube.com/watch?v=W3qJHIb1lyI
  • https://www.youtube.com/watch?v=Yc94ZofWHBM ***
  • https://www.youtube.com/watch?v=17RB5oq_yAY ***
***If using a type of high frequency music, it is best to use headphones or earbuds to gain the greatest benefit from the frequencies.

IN CLOSING: The goal is to establish a familiar daily routine that will aid in emotional and physical comfort and when the routine is disrupted for any reason, any negative emotional and physical response will be minor and limited. The use of Essential Oils and Music as two primary Alternative solutions WILL provide balance, structure, and enhanced emotional, mental, physical and spiritual comfort.

Only the last part of Regina's article is here. Do go to her blog,  Alternative  Therapies for Dementia and read the what you missed!

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 and Regina Hucks 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, February 23, 2018

Sleep, #6. Getting to Sleep

In this last blog on sleep, we finally get around to suggestions for better sleep. The bad news is that sleeping pills aren’t the answer. They are on the list to avoid for people living with dementia (PlwD*, and especially for people living with LBD (PlwLBD*). Here are some safer suggestions, an updated version of a 2012 blog:

During the day:

Exercise: Most dementia caregivers know that “exercise is better than most dementia drugs” for maintaining cognitive function. It is also better than most sleeping pills for fostering a good night’s sleep. However, make sure the exercise occurs 2 hours or more prior to bedtime.

Keep active: Anyone sleeps better if they have been active during the day. Even if movement is limited, stimulate with other activities, talking, hobbies, and such.

Keep the peace: Anything that upsets your loved one during the day may come back to haunt you both at night. Do everything you can to maintain peace and lower stress

Eliminate time worries: Don’t tell your loved one about future plans until the last moment. As dementia progresses, the concept of time is lost. Everything is in the here and now. That means thatn if your loved one remembers that you said he has an appointment for day after tomorrow at 4pm, he feels he has to be there NOW.

Bright lights: These help to maintain circadian rhythms. First, encourage exposure to as much natural daylight as possible. Take walks outside and get in some good exercise too! If that isn't possible, consider setting up a bright-light box, the kind used with seasonal affective disorder (SAD). Program it to turn on automatically a few minutes before morning wakeup time and stay on for about a half hour. Follow up with exposure to natural light during the rest of the day. Be prepared with sunglasses. Many people living with dementia have sensitive eyes and may need to protect their eyes even when it doesn't seem very bright.

Preparing for Bedtime:

Atmosphere: Make the bedroom calm, comfortable and dark. Have a soothing color scheme, darkened windows, a comfortable bed, good ventilation and a minimal number of blinking lights from clocks, radios and such.

Keeping time: If your loved one still has a concept of time, a large clock that’s easy to see from bed may help to decrease excessive getting up.

The last few hours of the day: This should be the calmest time of the day. No stress, no excitement. If bathing is stressful, do it earlier in the day. Ask family and friends to refrain from calling at this time. If TV is part of your normal routine, find the most calming shows you can to watch. You can also find many web pages that offer soothing content. Go to youtube.com and put "restful music" in the search box for a long list of suggestions.

Routine: Set up a routine that includes a set bedtime, low stress, enjoyable activities, the usual bedtime preparation, soft music, etc. What you include depends on the individual and what they enjoy. Once the routine is set, try not to vary it.

Medications: 

Most sleep aids. This was mentioned at the first of the blog but bears repeating. Most sleep medications are strong sedatives and are not considered safe for anyone with dementia.

Melatonin: This natural hormone is usually safe with LBD and has been used as a sleep aid. Because it triggers wake and sleep cycles, it should always be taken at least an hour before bedtime and should not be taken in the middle of the night so as to maintain proper cycles. A possible side effect is depression—a common LBD symptom already. However, the results are temporary, making melatonin worth a try. To decrease the likelihood of this side effect, try using the hormone in combination with bright lights mentioned earlier.

Medication time change: Ask the doctor if your loved one’s medication times can be adjusted so that those that encourage wakefulness, such as Exelon and Aricept are given in the mornings and those that calm such as Seroquel are given in the evenings.

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
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, February 16, 2018

Sleep Part 5: Depression and More

For the last month and more, we've been talking about sleep, how important it is and the many ways it gets disrupted. Today, we finish up and next week we talk about ways to help your loved one get to sleep and stay asleep--which is probably what you've been wanting all along! After all, it doesn't help a lot to know why a person isn't sleeping if you can't do anything about it. Well, actually, it does help to know why a person isn't sleeping because the answer to how to get them to sleep rests on the why. That's why we've spent so much time talking about it. But first, let's talk about it for one more blog.
Depression, fatigue and anxiety are all common with dementia. (3/22/13) They all can lead to lack of sleep and they all can feed each other.

Depression can be situational and temporary or a chronic dementia symptom--or both. Situational depression becomes chronic when Lewy bodies attack dopamine, a chemical involved with both mobility and mood. It can also become long-lasting, as with care partners who continually feel overwhelmed. Depression can cause either insomnia or excessive sleep. In either case, one's Circadian clock will be disrupted, (Sleep Part 2) the brain will have difficulty with clean up (Sleep Part 3) and dementia is likely to become worse.

There are some fairly safe antidepressants available. In addition, consider exercise to add oxygen and openness about the dementia to decrease negative feelings. Yes, talking about sad things takes away the sting a lot more than burying them does! (4/1/16)

Fatigue is the extreme lack of sleep. (9/25/14) It can follow depression or cause it. The best treatment for fatigue is a good, calm bedtime routine and a bedroom conducive to sleep. (to be discussed in a future blog).

Anxiety is a negative emotion very common with dementia, where a person is continually being presented with unwanted changes and limitations. Negative emotions are motivators and thus sleep-disrupting almost by definition. (4/7/17) Lack of sleep can also cause anxiety as one's defenses lower. There are anti-anxiety drugs but for many, they can cause more problems than they fix. If you use them at all, insist on the smallest dose possible, monitor carefully and quit at any sign of discomfort.

The best answer to anxiety is a two step process where you first validate it. "Yes, feeling so down isn't fun." or "This whole thing is scary, isn't it?" This allows the PlwD to feel heard and their negative feelings decrease, allowing your next step to work. That's when you say and do things that cause the PlwD to feel positive. Bribes work well here, by the way! (Blogs coming up with more about anxiety and dealing with it.)

Depression, fatigue and anxiety can cause each other or all three, and so treatment probably needs to be for all three together. This is especially true for the non-drug remedies. Besides, anyone can use more positive reinforcement, everyone needs a good sleep routine and exercise and openness is also good for everyone. Doing all of it together should improve not only one's sleep but one's general quality of life.

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
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, February 9, 2018

Compliments: Gifts of Love

Right around Valentine's Day we start thinking about giving gifts to show our love. That's why we've interrupted our blogs on sleep to talk about compliments. Compliments are wonderful dementia tools. Actually they are just plain wonderful with anyone. A compliment, used properly, provides motivation and makes a person want to try harder, do more, be better. They make us sit up straighter, think better, and go on to succeed more. However, they are especially great with our loved ones who are in need of positive reinforcement as they lose so much of who they used to be.
A compliment is:
  • A voluntarily given piece of positive reinforcement. It tells a person that their effort is something special and worthy of notice. This encourages the person to keep doing that something special even if the effort is difficult or frustrating.
  • A little gift of love. It tells a person that they personally are valued, interesting, appreciated and cared about.
  • A return gift to the donor. Giving a gift makes the giver feel good and compliments are no different. It just plain feels good to give a compliment to someone.
Compliments work better if:
  • if they are sincere. This is especially important with PlwD. Because they are so perceptive of feelings, their BS meter is sensitive. You have to really mean what you say. Otherwise, you lose trust. Be creative. Look for things you can honestly compliment and do it often.
  • if they are specific. Don't tell the person how wonderful they are--this is too general and doesn't offer enough information. Tell them how much you liked the colors in the picture they painted or how lovely that blouse looks on them or what a beautiful smile they have.
  • if they are related to the task at hand. Compliments about appearance are uplifting but not when the person is more concerned about how well they are doing with their new walker or getting food from their plate to their mouth.
  • when they describe how the person made your life better. "Thank you for doing the vacuuming. The room looks wonderful and I love it that I didn't have push that vacuum around!"
One great thing about giving compliments to a PlwD is that you can't give too many. If you overdo the compliments with most people, they will consider it flattery and you'll lose their trust. But PlwD process compliments a little differently. Compliment processing goes like this:
  • The compliment is accepted first at face value and causes a release of the "feel good" hormone, serotonin. Yes, even bad compliments make any person feel good at first!
  • Then sincerity is evaluated. This involves checking out the emotions of the giver. The compliment is not believed if their sincerity is doubted.
  • If the compliment is rejected, negative feelings related to distrust, belittlement, and such override any positive feelings. Up to here, the processing is the same for everyone, except that the PlwD is much more sensitive to insincerity.
The next step involves abstract thinking, where a person evaluates content and motivation. This requires tasks such as doing comparisons and considering past events. The PlwD can seldom do much of this. And so:
  • If the compliment passes the sincerity test, the PlwD accepts it. With concrete thinking, the brain accepts first information it receives about the compliment--the initial good feeling, which stays and actually improves the PlwD's ability to communicate.
And so, the bottom line is,
  • be continually on the lookout for things to compliment 
  • compliment often and 
  • always mean it.
Oh, one more thing. People, women especially, often have difficulty accepting them. When you receive a compliment and you say something like "Oh, this old thing. I picked it up at Goodwill." you not only put yourself down, you invalidate that person's judgment as well as your own and take the joy out of the whole interaction.

Instead, accept all compliments with at the least a smile and a "Thank you." If it is appropriate, I like to say, "Thank you, I like it too." or even "Thank you. I felt so lucky to find it while shopping at Goodwill." Just as a compliment is a gift to you, your response can be gift to the donor, making every compliment a mini-celebration complete with a gift exchange.

Next week, back to the series on sleep, with a blog on how it's related to depression and more.

* 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.

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 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, February 2, 2018

Sleep Part 4: Apnea

Recent blogs have been about how the brain uses sleep to keep us healthy. This blog is about how apnea disrupts a person's sleep. It is not the only disruption, of course. Previous blogs have discussed how one's internal clock and age-related issues like repeated bathroom trips can interrupt sleep.

Apnea, is a condition where sleepers stop breathing hundreds of times during the night. The autonomic nervous system (ANS) automates a person's life supporting activities such as breathing or heartbeats. We don't generally have to think about these actions. Our body just does them. Apnea can happen without dementia, but dementia, and especially LBD* weaken the ANS* so that a sleeping person "forgets" to breath. The resulting lack of oxygen in the brain wakes up the person. They start breathing again but they don't really catch up. With each waking event, the brain gets a little more behind. It needs lots of oxygen to fuel that janitorial service that works while you sleep to clear out dementia-causing debris. (Sleep, Part 3) With the brain still clogged, dementia symptoms can increase. (Think about how foggy you feel after a sleepless night!) Thus, it is a vicious circle. Dementia may cause apnea and then apnea makes the dementia worse!

Apnea is treatable but a PlwD* may not be able to tolerate or accept the treatment, which usually involves wearing a CPAP* mask while sleeping. Without an understanding of why it is needed, the PlwD will seldom leave this strange and annoying device on long enough to get used to it and find out how much better they sleep.

Doctors sometimes prescribe sedatives to help a person get to sleep initially while wearing the mask, but that is seldom an option for anyone with dementia, and especially anyone with LBD. A milder anti-psychotic like Seroquel or a mild anti-depressant like Welbutrin might help, but they are not always an option either. Some people tolerate these drugs and some don't. Besides, waking up and going back to sleep--with the mask on--is the real hurdle. It can't be fixed over and over with drugs.

In an online forum, a care partner told of how her loved one becoming very disoriented when he woke up with this strange contraption on his face. Another group member responded, "At this point (and condition) of that good man's life, I just wouldn't try to get him to use it. There will be enough things to cause him panic, distress, and discomfort in how he will be spending his life now, without adding a CPAP mask to what he will be going through." The group member has a point. Besides being a confusing irritation to the PlwD, trying to do something so difficult is also distressing, and often sleep-depriving, to the care partner as well. Is the high cost in peace and sleep worth a benefit that is limited because the mask comes off over and over?

Perhaps, this is an example of when a care partner must stop and re-evaluate their goals. There comes a time in the care of a PlwD when care goals must change from improving function to choosing comfort. A CPAP mask is actually very good for improving function--it can greatly improve clarity if used properly. But if the PlwD's dementia is so advanced that they can't use it properly, it is probably more of a burden than help. The changing of a goal from function to comfort is not easy because it signals the beginning of the end. However, it doesn't have to happen all at once. With each treatment and each activity, a care partner gets to make a separate decision. Some efforts at maintaining function can last much longer than others. Using or not using a CPAP may simply be the first decision of this sort that comes along.

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

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 and marijuana.

* Acronyms:
ANS: Autonomic nervous system
CPAP mask: Continuous positive airway pressure mask
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
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, January 26, 2018

Sleep Part 3: The Brain's Janitor

There's been a lot of talk about nutrients that will improve clarity by flushing things like free radicals out of your brain. But one of the best ways to do this is to sleep. That's right. Simply sleep. Well, for many PlwD*, sleep isn't so simple--see last week's blog. But it is very important for mental clarity as anyone who wakes up groggy after a poor night's sleep can attest.

Sleep is the time when the brain cleans house. The lymphatic system, which works as the body's janitor 24 hours a day can't cross the blood brain barrier (BBB). But don't worry, the brain has its own janitor, the glymphatic system. The problem is that the brain doesn't have enough power to operate it AND do other brain functions well. And it is designed to shut down many of these functions for several hours a day--a process we call "sleep." Sleep isn't the quiet, inactive time we grew up thinking it was however. A whole different set of brain functions come into play and one of them is the brain's janitoring service.

Researchers now believe that while a person sleeps, brain cells shrink. The resulting space is then filled with cerebral fluid that circulates throughout the brain and flushes out waste proteins, dead cells and other debris that builds up in the spaces between brain cells. It's like a busy building, where the janitors come in and do their work after the office workers have gone home and the halls are empty. Then when the person wakes up, the brain cells return to normal, which slows the flow of cerebral fluid to almost nothing. And so when sleep doesn't happen, the debris can't get flushed out and a person gets groggy, inefficient and can have many dementia symptoms. If a person is already living with dementia, of course this just makes it worse.

Normal sleep occurs in cycles of 75% deep sleep, which is when cleaning and restoring happens and 25% of lighter, REM* sleep, which is when dreams occur. That's why short naps may not work well. They may not allow a person to go through a whole cycle and the flushing may not start, or if started may not be complete. Ideally, you need about 7 hours of uninterrupted sleep. Now we know that few elderly folks can last a whole night without getting up to go to the bathroom a time or three! However, the good news is that this doesn't have to be problematic since people usually wake up between cycles. If the person can go right back to sleep, they can start another cycle.

You, as care partner, may have more difficulty getting back to sleep. Because you are waking up on the PlwD's schedule instead of your own, it may not be between cycles for you. In addition, you probably have to think about what you are doing more than they do. For these reasons, you may be wide awake by the time you get back to bed. Now is the time when a sleep ritual can help. Here is a simple one:
  • Release all thoughts of frustration. You can't do anything about it now anyway.
  • Then think a few moments about something positive, something you feel grateful about. This gets the soothing, calming chemicals flowing in your body.
  • Start deep breathing. Put your hand on your abdomen and feel it rise as you breathe in and lower as you breathe out.
  • With your eyes closed, focus on a point in the dark and on nothing else but your breathing. If you find your thoughts gliding off into other things, gently pull them back.
You may be able to guide your PlwD through this by saying what your are doing and encouraging them to mirror you.

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 and marijuana.

* 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
BBB: Blood brain barrier
REM: Rapid eye movement

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, January 19, 2018

Ringing in the New Year with a New You

We are interrupting our series on sleep for a blog entry from our alternative therapies consultant, Regina Hucks, that should really wake you up. Actually, only the very first section is here. You have to go to her blog, Alternative Therapies for Dementia Care, to read the rest. I'm sure you'll want to read on once you get to the end of this segment. Or, if you want to get right into it, click here and go now! 

Happy New Year to each and every one of you. 2018 shows promise as truly a NEW Year but as is everything in life, to make it NEW will require YOUR participation.

This month’s blog post isn’t about any therapies. It’s about going into a New Year, a year of possibilities and YOUR ability to make it everything you desire . If you were a Numerologist, you’d say it was the Year of Angels filled with excitement, love, relationships, peace and success. Astrologers would say we are headed into a Universal Fresh Start!

Well, I believe it’s the Year of YOU, that everything predicted by numerologists and Astrologers is about YOU. But what does that really mean?

It means, this is the year of change in YOUR life…through positive change IN you. The laws of the Universe are pretty well convincing when it comes to change. The ONLY thing in this world that you have ANY control over changing is…YOU. When you change the way you think, let go of old thoughts that truly do not serve a positive purpose in your life, YOU change and like dominoes falling, everything around you changes for the better.

That kind of goes against the grain of everything you are and believe as a caregiver right? Well…give this some thought…

If you were on an airplane and suddenly the masks fell from the ceiling… would you try to help the people around you first or would you put your mask on first and then help those around you?

I was 13 when my Mother, the Quantum Physicist, first asked me that question and with my chest puffed out and my heart filled with compassion, my answer was, “I’d help everyone I could.” Her response was, “Well, my darling girl, that’s a very noble gesture but also a very stupid thing to do and I would miss you terribly.” “Miss me?” I asked. “Well of course,” she said with that you’re about to get that 2 by 4 across the head kind of lesson look on her face. “You have so much compassion in your heart for people. You are truly fulfilled when serving others but, my dearest daughter, if you do not take care of yourself first, you will be dead and unable to help anyone and that would be such a waste.” Wow … lesson received.

Taking care of YOU … FIRST. That is a very hard concept for caregivers to get their head around but trust this, YOU matter. YOU have value and worth not only to yourself but to so many others but unless you are mentally, physically, emotionally and spiritually healthy, you can do little to help anyone.

Achieving YOUR desires. Finding JOY and Peace in YOUR life. Being the VERY BEST of YOU. Creating the life YOU want and deserve. Yes, YOU can have it all!

It’s the New Year … NEW … that’s the key word here. It’s the year of the NEW YOU and yes, you can create it all and it’s easier than you think. Read on …

That week between Christmas and New Years Day is generally a time to rest, reflect and renew the spirit with promises for change in the coming year. We create NEW resolutions (more than likely reworded repeats of old resolutions) with a twist on new resolves. At least, that seems to be the case with 99% of my friends. So what about that 1%? What their Secret?

I have a few friends that are always successful in creating and fulfilling their New Years Resolutions so about 10 years ago, I sat down with each of them to find out what their secret was. Oddly enough, what they told me, I already knew. What I wasn’t doing was applying it to my New Year Resolutions like I was to everything else in my life. What the heck was I thinking?

Change is something most people resist. Change can be intimidating…but it really depends on your perspective. Technology can be intimidating … Cooking a 6 course meal for 30 people can be intimidating … for many people, going to social functions with 300 strangers can be intimidating but simply changing the way you see things, the way you think about things is … really simple because it is about what you believe to be true and considering the possibilities of a different outcome. Feeling intimidated by change is simply fear of stepping out of the box you’ve created for yourself.

How do you feel when you get a haircut or buy a new shirt or blouse or a new pair of shoes? That feeling is being excited about the CHANGE in you! You stepped outside your box and created a NEW YOU if only for a day, a week or even a single moment.

Here’s why.
Thoughts create words, words create energy, energy transforms matter. In other words, everything you think or speak is like the energy of a prayer. That energy has the ability to change things including the DNA in your body on a cellular level.

So, HOW do you do that? Stay with me now … (Click here to continue.)

(Be sure to go see what's next! Helen)

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 and neither is Regina Hucks.  As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, January 12, 2018

Sleep Part 2: Circadian Clock Issues

This blog is about how one's internal clock can get messed up and cause a person's sleep/wake times to be disrupted.

Sleep is the time when the body actively restores and strengthens its resources. During our deepest sleep, muscles are relaxed, allowing them to rest and be repaired. The blood supply to muscles is increased, bringing hormones and other chemicals to repair damage and normal wear and replacing the proteins needed to fuel movement.

A Circadian clock controls when these activities and other regular ones occur. From its control center very near the brain's visual cortex, it secretes various hormones at given times throughout the day and night. (Circadian is Latin for "about a day.") The hormones trigger a person to feel sleepy or hungry. Once asleep, they trigger the brain when to go into a heavy sleep where various cleaning, repair and other upkeep tasks happen, when to go into a lighter sleep (REM sleep) where memory sorting dreams occur, and when to wake up.

The internal clock maintains its accuracy in a variety of ways, but the most important is by using information from light sensors in the eyes sent via the visual cortex's non-visual sensory system. When the clock is damaged by dementia, its functioning can become inaccurate and garbled. Sleep and waking routines are disrupted. A person might get their days and nights turned around. More likely, they will wake up several times a night and nap often during the day. Of course, it is not only the PlwD's* sleep that is disturbed. The care partner's sleep is too.

The control centers for both visual and non-visual systems are very close together in an area that is often an early LBD target (think illusions, hallucinations and the like). Because of the closeness, the Circadian clock can be an early target as well, causing any of the above time regulation issues.

Of course, Lewy bodies are the only culprits. As people age, they tend to wake more often for a variety of reasons, from bathroom visits to apnea and more. The circadian clock functions in cycles of about 90 minutes each. Waking in the middle of a cycle can interfere and cause the clock to malfunction. This may cause a person to have difficulty sleeping at night, staying awake during the day or have repeated shorter periods of sleeping and waking throughout the day. None of these may provide for the deep sleep or for the dreaming sleep, both of which the brain needs for good functioning.

Circadian clock malfunctioning can cause a person to sleep a lot in the daytime, but there are other reasons for this too. With dementia, everything from thinking to moving takes more time--and more energy. Add the tremors common with PDD*, and it gets even more energy-intensive. This means that the PlwD needs more sleep to replenish their energy. It's nature's way of allowing the body and the brain the time they need to catch up and clean up. Unless the PlwD is not sleeping much at night, this is not something to stress about. Just use the time to do something for yourself--like catching up on your own sleep!

If the PlwD isn't getting much night-time sleep, experiment with nap time and bedtime routines to find the best ones for helping a PlwD fall asleep at night and stay asleep for longer periods at night. (Suggestions in a later blog.)

Next week: Sleep, Part 3: The Brain's Janitor.

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 and marijuana.

* 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: 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 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, January 5, 2018

Sleep Part 1: The Value of Sleep

Sleep is as necessary to good health as exercise--maybe even more! An elderly or infirm person, including anyone with dementia, needs about 7 to 9 hours of sleep a day to function properly. The symptoms from lack of adequate sleep include: confusion, less muscle strength, decreased function of vital organs, pain sensitivity, diabetes risks, and a weakened immune system. Add the damage already done by dementia, which increases all of the above symptoms in both likelihood and severity, and you can see how important sleep is for our loved ones. However, LBD,* and dementia in general, also interrupts sleep with a variety of issues and so sleep isn't always easy to obtain.

Sleep is the time when the body actively restores and strengthens its resources. During our deepest sleep, muscles are relaxed, allowing them to rest and be repaired. The blood supply to muscles is increased, bringing hormones and other chemicals to repair damage and normal wear and replacing the proteins needed to fuel movement. The tremors common to persons living with Parkinson's disease with dementia (PlwPDD)* put a lot of wear on their muscles each day and so this restorative period is quite important.

Unlike the muscles and other body functions that slow down and relax during sleep, the brain is very busy. Think of it as a busy office, shut down for the night. Besides being the time for restoring used up chemicals and proteins and preparing for a new day, this is when the brain does its heavy cleaning. This has become a very interesting area for researchers. First, it was nutrition like antioxidants that would rid the body damaging "free radicals." Then came drugs that that clear away sticky clumps of plaque in the brain and improve function. So far, all the research has been with Alzheimers, but we of course hope that it works with other dementias too. Then came new research on how important sleep is for the brain's janitor work. Even the drugs need sleep to work properly!

Sleep is a part of the Circadian Rhythm, an internal clock that times various functions including sleeping, waking and secreting of various chemicals at appropriate times for repair, cleaning, relaxing, waking, and so on. When this cycle is thrown off, the body doesn't get the restorative care it needs. As people age, they tend to wake more often for a variety of reasons, from bathroom visits to apnea and more. All can interfere with the function of their internal clock. The visual cortex is often an early Lewy body target (Think hallucinations!) and so a PlwLBD can experience these issue earlier and more intensely.

Apnea is one of the conditions that can greatly interfere with sleep. Apnea, a condition which sleepers stop breathing hundreds of times during the night, is linked to memory decline itself. Its resulting lack of oxygen tends to make already present dementia worse. This lack of oxygen is what wakes a person up, so that they can start breathing again. Apnea is treatable but a PlwD may not be able to tolerate or accept the treatment.

Depression often interferes with sleep. Depression is a very common symptoms with LBD, because of the loss of dopamine, which is a feel good chemical as well as one that facilitates movement. The problem here is that some Parkinson's drugs may decrease depression but cause insomnia.
REM sleep behavior disorder is a common symptom of LBD, often showing up years before any other symptoms. Its active dreams can disturb sleep, or more likely disturb a partner's sleep. Past blog entries have discussed this phenomenon.

And finally, how do we combat all of this? How do we help our loved ones...and ourselves...get the sleep we need. The easiest answer is to take a sleeping pill, but that is probably the lest safe for anyone. There are many environmental and mental things to try. Mainly it is a matter of setting up a soothing routine, following it with relaxing thoughts and waiting for nature to take charge.

Look for more about each of these issues in future blogs.

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

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 and marijuana.

* 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

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.