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

Sunday, October 22, 2017

Lewy Body Phrase for 10-22: Care Partner Care

A person living with dementia (PlwD) who has a healthy, rested, happy care partner will have fewer behavioral and psychological symptoms of dementia (BPSD) than one whose care partner is sick, overburdened, tired, or irritable.

A PlwD mirrors care partner stress as a negative emotion of their own and, without impulse control, acts it out.

Martha is tired, her back hurts and she's worried about the car that needs repairs. Dave picks up on Martha's stress, identifies it as his own residual fear that his life is disappearing, and begins to shadow her everywhere she goes.

Short term solution: Martha needs to take a few hours of respite so that her stress level will decrease. With less stress of her own, Dave will also be less stressed, he won't feel so fearful and his shadowing will decrease.

Log term solution: Martha may need to hire or ask for help so that she can get the rest she needs, see a doctor about her back, join a caregiver support group and/or talk to a financial guide about budgets. See our many blogs about caregiver care or read about it in our books.

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.

Saturday, October 21, 2017

Lewy Body Word for 10-21: Hallucinations

Hallucinations: seeing, hearing or feeling something that isn't really there.

With LBD: Well formed visual hallucinations often appear before thinking abilities fade.
With Parkinson's: Similar hallucinations appear well after motor symptoms but while thinking is still intact.
  • At first, the person believes the care partner's explanation that the hallucinations are simple Lewy playing tricks again. Earl said, "I know the little army men aren't real but they are fascinating."
  • As abstract thinking fades, Earl will begin to believe his little men are real. As with delusions, this belief cannot be changed.
With other dementias: Hallucinations can occur, usually after thinking abilities fade.

Delusions: Once thinking fades, hallucinations are often combined with delusions into elaborate dramas that the person truly believes.

Best reaction: Empathetic communication (tomorrow's blog)

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, October 20, 2017

Lewy Body Word for 10-20: Delusions

Delusions: Dramas brought about by faulty thinking often combined with residual emotions. Delusions show up early with LBD because thinking fades earlier too.

Dave see his wife on the phone:
  • This triggers his residual fear of abandonment. 
  • To make sense of this fear, his dementia-damaged-brain offers the delusion that that she is talking to her lover. 
  • Now, also angry, he accuses her.
  • When she tries to explain, he becomes even angrier.
Considering the validity of a thought requires abstract thinking. Without it, the delusion becomes Dave's truth. Consider how you would feel if someone tried to tell you that something was not the way you knew at the very core of your being that it was. This is how strong delusions are. Explaining, defending or arguing DO NOT work.

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.

Thursday, October 19, 2017

Lewy Body Phrase for 10-19: Non-Drug Options

Non-drug options should be tried first before behavior management drugs. They:
  • Are generally safer than behavior management drugs and often equally efficient.
  • Often take more care partner time and effort to use than popping a pill.
  • Can provide opportunities for care partner and loved one togetherness.
  • Can be used alone or in combination with behavior management drugs, which often results in the need for fewer drugs.
Non-drug options includes the following and much, much more:
  • care partner care
  • occupational therapy
  • infection control
  • relaxation methods
  • music and rhythm therapy
  • aromatherapy and massage
Tomorrow: Rehabilitation therapies
    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.

    Wednesday, October 18, 2017

    Lewy Body Phrase for 10-18: Drugs and Sensitivity

    No drug can cure LBD but some can treat its symptoms.
    • Dementia drugs work to improve cognition and other LBD symptoms.
    LBD can cause a person to be super-sensitive to certain drugs.
    • Which drugs are "Lewy-sensitive" for each person is very individual.
    • Lewy-sensitive drugs act as though the person had a much larger dose than normal, with often severe results.
    Behavior management drugs are often Lewy-sensitive. Use very carefully if at all.

    Drugs for other symptoms should be reviewed for Lewy-sensitivity before use. (LBDA Medications Glossary)

    All drugs should be started in the smallest dose possible, increased until they do the job or cause problems, and stopped when no longer needed.

    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.

    Tuesday, October 17, 2017

    Lewy Body Word for 10-17: BPSD

    BPSD stands for behavioral and psychological symptoms of dementia. BPSD are triggered by stressful irritants that can be:
    • physical, as with an infection.
    • external, as with an overheard phone conversation.
    • perceptual, as with the person's perceived view of that their spouse is "calling their lover."
    • emotional, as with the fear the perception of the call generates.
    • a combination of these, as with:
      • frustration at being unable to explain the discomfort of an infection
      • anger at being "lied to" by the spouse whose explanation is different from the person's hard-wired belief.
    BPSD are often rational behaviors based on incorrect information derived from faulty thinking. They include but are not limited to:
    • agitation, anxiety and irritation
    • threatening, aggressive or disruptive physical or verbal behavior
    • delusions, usually of infidelity, abandonment or theft
    • depression and withdrawal
    • hallucinations
    • paranoia
    • repetitive activity
    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.

    Monday, October 16, 2017

    Lewy Body Word of the Month for 10-16: Stress

    When dealing with dementia, there is lots of stress. Each person has a stress threshold, the amount of stress they can handle without calling in the reserves. Any illness, including dementia, stresses the body which lowers this threshold.

    The body gives managing stress overload high priority. When it overflows one's threshold, the body diverts resources from lower priority tasks, such as managing dementia symptoms, to deal with this overload.

    Stressors are anything that causes physical, emotional, or environmental discomfort or distress.

    You can often decrease dementia symptoms (or the symptoms of any disease) by decreasing their stressors.

    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, October 15, 2017

    Lewy Body Phrase for 10-15: What's Left

    Dementia takes away a lot. Here are three functions that are left:

    The senses: Seeing, hearing and touching may be affected by other issues, but not dementia, although it can change one's perception of what the senses deliver.

    • Communication tools: Smiles and gentle touch.

    Emotions remain long after thinking has faded. When the senses deliver information about an experience, be aware that the emotion attached to that information is often one left over from a previous experience.

    • Communication tools: Hugs and loving words.

    Concrete thinking: This basic, unfiltered thinking lasts to the end. It accepts what the senses deliver and the attached emotion and does its best to make sense of the experience. The result is often a delusion, or a faulty belief.

    • Communication tools: Simple words and acceptance. (Uh, huh, acceptance...not belief, but definitely acceptance!)

    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.

    Saturday, October 14, 2017

    Lewy Body Dementia Word for 10-14: Emotions

    Emotions drive behavior.
    • Emotions remain after abstract thinking fades. A person will respond to the first emotion they experience during an event.
    • Negative emotions are motivators. They are stressful, strong and intense. Their job is to drive you away from a perceived danger or discomfort.
    • Positive emotions are comforters. They are centering, calming and relaxing. Their job is to encourage us to stay in a comfortable space.
    • The first emotion experienced is often residual, left over from an earlier event. Residual emotions are usually negative; they are stronger and last longer.
    Make care partnering easier by avoiding negative emotions and promoting positive ones.

    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, October 13, 2017

    LBD Phrase for 10-13: Concrete Thinking

    Concrete thinking is
    • What a person is left with as abstract thinking fades. 
    • Based on information gathered by the senses.
    • Literal; a "hot potato" is just a very warm vegetable.
    • In the present, with no past or future, no ability to wait or to accept delayed gratification.
    • Single-minded and based on the brain's first information.
      • If the first thought about a spouse's phone conversation is "she's talking to her lover" that's the only truth.
    • Able to accept only what the person experiences personally.
      • The little men that the person sees are real and not hallucinations.
    • Hard-wired and can't be changed with explanations, defending or arguing.
    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.

    Thursday, October 12, 2017

    LBD Phrase for 10-12: Abstract Thinking

    Thinking comes in two forms: we start out with concrete thinking and gradually develop abstract thinking.
    Abstract thinking is for reasoning and developing concepts. It is what a person uses when they:
    • Accept their care partner's explanation that the little men they see are hallucinations.
    • Realize that what they first thought was fire is just a flash of light.
    • Make a decision based on information from an outside source, such as a book or other person.
    • Tell time, do finances or organize a party.
    • Understand the punchline of a joke.
    As the ability to think abstractly fades, concrete thinking remains. That's tomorrow's phrase.

    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.

    Wednesday, October 11, 2017

    LBD Word for 10-11: Treatable

    LBD is treatable. We've been teaching about treating LBD for over a decade! 
    • Symptoms can be addressed individually, often with good results. 
    • With good treatment, a person with LBD can have a good quality of life for many years.
    • Some drugs can help: dementia drugs, anti-depressants, and mild anti-psychotics and others for specific symptoms, but drugs can also be very problematic. 
    • Non-drug options, alone or combined with drugs in lower doses than when used alone is often the best option.
    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.

    Tuesday, October 10, 2017

    LBD Phrase for 10-10: Progressive and Incurable

    Today's word is progressive and incurable.
    • Like most neurological diseases, LBD grows in the body for years before a person has diagnosible symptoms. 
    • By this time, the disease is too far along to cure or stop. It's like cancer that has become inoperable. Don't believe the claims that this miracle herb or that miracle drug has cured LBD, Parkinson's or any other neurological disease.
    • Hopefully,  researchers will have figured out something that works in the next decade or so.
    • When they do, it will likely be something that stops the disorder either before it happens, or very early on, before it has expanded too much to stop.
    Tomorrow's word is treatable. LBD isn't curable but it is treatable.
      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.



      Monday, October 9, 2017

      LBD Word for 10-9: Diagnosis

      Today's word is diagnosis:
      • LBD often goes undiagnosed or is diagnosed as another disease such as Alzheimer's or Parkinson. It often shows up in combination with other dementias, making diagnosis even more difficult.
      • Like other neurological diseases, LBD must be diagnosed mainly via patient history and symptoms.
      • Diagnosis is very important because a) many of LBD symptoms are treatable and b) the wrong treatment can make it worse.
      • A person is usually seen by three to five doctors before finally being diagnosed with LBD, and is usually diagnosed with at something else first, such as depression, Alzheimer's or Parkinson's.
      • When taking anyone to a specialist for a diagnosis of any kind of dementia symptoms, make sure the specialist is Lewy-savvy to assure a more correct diagnosis.
      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, October 8, 2017

      LBD Word for 10-8: Individual

      LBD is very specific to each individual, and thus hard to diagnose, especially by non-LBD savvy doctors--and there are many of those!
      • No two people will experience this disorder the same way.
      • No two people will have the same symptoms.
      • When two people have a similar symptom, they will likely express it differently, or with more or less intensity.
      However, there are enough similarities that knowledgeable (Lewy-savvy) doctors can diagnose it and differentiate it from other dementias.

      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.

      Saturday, October 7, 2017

      LBD Word for 10-7: Statistics


      • LBD affects 1.4 million Americans and likely many more who are undiagnosed.
      • LBD is the second most common progressive dementia after Alzheimer's disease (AD).
      • Like AD, LBD is caused by damaged proteins, but they are not the same ones.
      • LBD is a neurological disease caused by damaged proteins called Lewy bodies that spread in time throughout many areas of the brain.
      • Researchers believe that Lewy bodies occur due to a combination of genetics and toxins in the environment.
      • Symptoms depend on where the Lewy bodies are in the brain.
      For more information about Lewy body disorders, read our books:
      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, October 6, 2017

      October: Lewy Body Dementia Awareness Month

      For the rest of the month, I will post a LBD Word or Phrase of the day. Today's word about Lewy Body Dementia is disease.
      • LBD is so much more than just dementia. Dementia is just one if it's many symptoms.
      • It is a disease that affects many areas of the body besides the brain.
      • It is a disease that is progressive and as yet incurable.
      • It is a disease where many of the symptoms are treatable.
      • It is a disease that we don't know nearly enough about. We don't fully know how we get it or how to stop it--yet.
      • It is a disease that needs a lot more research!
      Tomorrow's word: statistics

      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.