Monthly Archives: April 2017

Excerpts on LBD in “The Dementias” (NIH online-only booklet)

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Excerpts on LBD in “The Dementias” (NIH online-only booklet)

The National Institutes of Health (nih.gov) has several publications on neurological diseases.  I recently came across their booklet on “The Dementias,” which includes a short section on synucleinopathies.  Synucleinopathies are caused by the abnormal accumulation of the protein alpha-synuclein.  Lewy body dementia is addressed along with its two types — Dementia with Lewy bodies and Parkinson’s disease dementia.

Here are excerpts from the synucleinopathies section.  Look at the booklet online for other chapters — risk factors, diagnosis and treatment, etc. — and other types of dementia.

Robin

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nia.nih.gov/alzheimers/publication/dementias/types-dementia

Excerpts from
The Dementias
NIH Online Booklet
Published September 2013 (Last Updated July 2016)

Types of Dementia

Various disorders and factors contribute to the development of dementia. Neurodegenerative disorders such as AD, frontotemporal disorders, and Lewy body dementia result in a progressive and irreversible loss of neurons and brain functions. Currently, there are no cures for these progressive neurodegenerative disorders.

Some types of dementia disorders are described below.

Synucleinopathies

In these brain disorders, a protein called alpha-synuclein accumulates inside neurons. Although it is not fully understood what role this protein plays, changes in the protein and/or its function have been linked to Parkinson’s disease and other disorders.

One type of synucleinopathy, Lewy body dementia, involves protein aggregates called Lewy bodies, balloon-like structures that form inside of nerve cells. The initial symptoms may vary, but over time, people with these disorders develop very similar cognitive, behavioral, physical, and sleep-related symptoms. Lewy body dementia is one of the most common causes of dementia, after Alzheimer’s disease and vascular disease. Types of Lewy body dementia include:

* Dementia with Lewy bodies (DLB), one of the more common forms of progressive dementia. Symptoms such as difficulty sleeping, loss of smell, and visual hallucinations often precede movement and other problems by as long as 10 years, which consequently results in DLB going unrecognized or misdiagnosed as a psychiatric disorder until its later stages. Neurons in the substantia nigra that produce dopamine die or become impaired, and the brain’s outer layer (cortex) degenerates. Many neurons that remain contain Lewy bodies.

Later in the course of DLB, some signs and symptoms are similar to AD and may include memory loss, poor judgment, and confusion. Other signs and symptoms of DLB are similar to those of Parkinson’s disease, including difficulty with movement and posture, a shuffling walk, and changes in alertness and attention. Given these similarities, DLB can be very difficult to diagnose. There is no cure for DLB, but there are drugs that control some symptoms. The medications used to control DLB symptoms can make motor function worse or exacerbate hallucinations.

* Parkinson’s disease dementia (PDD), a clinical diagnosis related to DLB that can occur in people with Parkinson’s disease. PDD may affect memory, social judgment, language, or reasoning. Autopsy studies show that people with PDD often have amyloid plaques and tau tangles similar to those found in people with AD, though it is not understood what these similarities mean. A majority of people with Parkinson’s disease develop dementia, but the time from the onset of movement symptoms to the onset of dementia symptoms varies greatly from person to person. Risk factors for developing PDD include the onset of Parkison’s-related movement symptoms followed by mild cognitive impairment and REM sleep behavior disorder, which involves having frequent nightmares and visual hallucinations.

Excerpts on PSP and CBD in “The Dementias” (NIH online-only booklet)

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This email may be of interest to those dealing with the dementia forms of PSP and CBD.  (Not everyone with these diseases has dementia.  To read about the types of PSP and CBD, look under the “PSP Education” and “CBD Education” pages of the Brain Support Network website.)

The National Institutes of Health (nih.gov) has several publications on neurological diseases.  I recently came across their booklet on “The Dementias,” which includes a section on tauopathies as types of dementia.  Tauopathies are caused by the abnormal accumulation of the protein tau.  Both corticobasal degeneration (CBD) and progressive supranuclear palsy (PSP) are covered.  Other tauopathies addressed include frontotemporal disorders (such as Pick’s) and argyrophilic grain disease (AGD).  (In brain donations we’ve helped with, AGD co-occurs in about 20% of all PSP cases.)

“The Dementias” booklet links to the NIH pages on CBD and PSP.  I think the PSP detail page is quite good (and it’s listed as one of our “Top Resources for PSP”).  I don’t think the CBD detail page is nearly as good.

Here are excerpts from the tauopathies section.  Look at the booklet online for other chapters — risk factors, diagnosis and treatment, etc. — and other types of dementia.

Robin

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nia.nih.gov/alzheimers/publication/dementias/types-dementia

Excerpts from

The Dementias
NIH Online Booklet
Published September 2013 (Last Updated July 2016)

Types of Dementia

Various disorders and factors contribute to the development of dementia. Neurodegenerative disorders such as AD, frontotemporal disorders, and Lewy body dementia result in a progressive and irreversible loss of neurons and brain functions. Currently, there are no cures for these progressive neurodegenerative disorders.

Some types of dementia disorders are described below.

Tauopathies

In some dementias, a protein called tau clumps together inside nerve cells in the brain, causing the cells to stop functioning properly and die. Disorders that are associated with an accumulation of tau are called tauopathies.

In AD, the tau protein becomes twisted and aggregates to form bundles, called neurofibrillary tangles, inside the neurons. Abnormal clumps (plaques) of another protein, called amyloid, are prominent in spaces between brain cells and are a hallmark of the disease. Both plaques and tangles are thought to contribute to reduced function and nerve-cell death in AD, but scientists do not fully understand this relationship. It is not clear, for example, if the plaques and tangles cause the disorder, or if their presence flags some other process that leads to neuronal death in AD.

Other types of tauopathies include the following disorders:

Corticobasal degeneration (CBD) is a progressive neurological disorder characterized by nerve-cell loss and atrophy (shrinkage) of specific areas of the brain, including the cerebral cortex and the basal ganglia. The disorder tends to progress gradually, with the onset of early symptoms around age 60. At first, one side of the body is affected more than the other side, but as the disease progresses both sides become impaired. An individual may have difficulty using one hand, or one’s hand may develop an abnormal position.

Other signs and symptoms may include memory loss; trouble making familiar, focused movements (apraxia) such as brushing one’s teeth; involuntary muscular jerks (myoclonus) and involuntary muscle contractions (dystonia); alien limb, in which the person feels as though a limb is being controlled by a force other than oneself; muscle rigidity (resistance to imposed movement); postural instability; and difficulty swallowing (dysphagia). People with CBD also may have visual-spatial problems that make it difficult to interpret visual information, such as the distance between objects.

There is no cure for CBD. Supportive therapies are available to reduce the burden of certain symptoms. For example, botulinum toxin can help control muscle contractions. Speech therapy and physical therapy may help one learn how to cope with daily activities.

Frontotemporal disorders (FTD) are caused by a family of brain diseases that primarily affect the frontal and temporal lobes of the brain; they account for up to 10 percent of all dementia cases. Some, but not all, forms of FTD are considered tauopathies. In some cases, FTD is associated with mutations in the gene for tau (MAPT), and tau aggregates are present. However, other forms of FTD are associated with aggregates of the protein TDP-43, a mutated protein found among people with a type of ALS that is inherited. Mutations in a protein called progranulin may also play a role in some TDP43-opathies.

In FTD, changes to nerve cells in the brain’s frontal lobes affect the ability to reason and make decisions, prioritize and multitask, act appropriately, and control movement. Some people decline rapidly over 2 to 3 years, while others show only minimal changes for many years. People can live with frontotemporal disorders for 2 to 10 years, sometimes longer, but it is difficult to predict the time course for an affected individual. In some cases, FTD is associated with progressive neuromuscular weakness otherwise known as amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease). The signs and symptoms may vary greatly among individuals as different parts of the brain are affected. No treatment that can cure or reverse FTD is currently available.

Clinically, FTD is classified into two main types of syndromes:

* Behavioral variant frontotemporal dementia causes a person to undergo behavior and personality changes. People with this disorder may do impulsive things that are out of character, such as steal or be rude to others. They may engage in repetitive behavior (such as singing, clapping, or echoing another person’s speech). They may overeat compulsively; lose inhibitions, causing them to say or do inappropriate things (sometimes sexual in nature); or become apathetic and experience excessive sleepiness. While they may be cognitively impaired, their memory may stay relatively intact.

* Primary progressive aphasia (PPA) causes a person to have trouble with expressive and receptive speaking—finding and/or expressing thoughts and/or words. Sometimes a person with PPA cannot name common objects. Problems with memory, reasoning, and judgment are not apparent at first but can develop and progress over time. PPA is a language disorder not to be confused with the aphasia that can result from a stroke. Many people with PPA, though not all, develop symptoms of dementia. In one form of PPA, called semantic PPA or semantic dementia, a person slowly loses the ability to understand single words and sometimes to recognize the faces of familiar people and common objects.

Other types of FTDs include:

* Frontotemporal dementia with parkinsonism linked to chromosome 17 (FTDP-17), a rare form of dementia that is believed to be inherited from one parent and is linked to a defect in the gene that makes the tau protein. The three core features are behavioral and personality changes, cognitive impairment, and motor symptoms. People with this type of FTD often have delusions, hallucinations, and slowness of movement and tremor as seen in Parkinson’s disease. Typical behavioral/personality characteristics include apathy, defective judgment, and compulsive and abusive behavior. Diagnosis of the disorder requires the confirmed presence of clinical features and genetic analysis. Palliative and symptomatic treatments such as physical therapy are the mainstays of management.

* Pick’s disease, a tauopathy subtype of FTD characterized by hallmark Pick bodies—masses comprised of tau protein that accumulate inside nerve cells, causing them to appear enlarged or balloon-like. Some of the symptoms of this rare neurodegenerative disorder are similar to those of AD, including loss of speech, inappropriate behavior, and trouble with thinking. However, while inappropriate behavior characterizes the early stages of Pick’s disease, memory loss is often the first symptom of AD. Antidepressants and antipsychotics can control some of the behavioral symptoms of Pick’s disease, but no treatment is available to stop the disease from progressing.

Progressive supranuclear palsy (PSP) is a rare brain disorder that damages the upper brain stem, including the substantia nigra (a movement control center in the midbrain). This region also is affected in Parkinson’s disease, which may explain an overlap in motor symptoms shared by these disorders. Eye movements are especially affected, causing slow and then limited mobility of the eye. The most common early signs and symptoms include loss of balance, unexplained falls, general body stiffness, apathy, and depression. A person with this type of dementia may suddenly laugh or cry very easily (known as pseudobulbar affect). As the disorder progresses, people develop blurred vision and a characteristic vacant stare that involves loss of facial expression. Speech usually becomes slurred, and swallowing solid foods or liquids becomes difficult. PSP gets progressively worse, but people can live a decade or more after the onset of symptoms. Dextromethorphan, a common ingredient in cough medicine, has been approved for the treatment of pseudobulbar affect.

Argyrophilic grain disease is a common, late-onset degenerative disease characterized by tau deposits called argyrophilic grains in brain regions involved in memory and emotion. The disease’s signs and symptoms are indistinguishable from late-onset AD. Confirmation of the diagnosis can be made only at autopsy.

“Why we Need to Stop Saying, “I’m Sorry For Your Loss” (Elephant Journal)

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“Why we Need to Stop Saying, “I’m Sorry For Your Loss” (Elephant Journal)

Here is one author’s point of view that we should stop saying “I’m sorry for your loss” when meeting a bereaved person.  The author offers five options:

1. I’m sorry you’re suffering right now, but I’m here with you and willing to help any way I can. Is there anything you need right now?

2. I’m sorry for whatever challenges might lie ahead for you, but I’m here and willing to help. Would it be okay if I call next week just to check in with you?

3. Please accept my deepest condolences. I can’t imagine what you must be going through right now, but I know enough about grief to know that it can be very challenging. Don’t hesitate to call me if there’s anything I can do to help.

4. I’m so sorry to hear about _____. I’m sure you’re going to miss him/her terribly. How are you holding up?

5. I know there’s nothing I can say right now to make things better, but I also know that having someone to talk to at times like this is really important, so don’t hesitate to call me whenever you need to.

Here’s a link to the full article:

elephantjournal.com/2017/04/why-we-need-to-stop-saying-im-sorry-for-your-loss/

Why we Need to Stop Saying, “I’m Sorry For Your Loss.”
by Ed Preston
Elephant Journal
Apr 2, 2017

Food for thought,
Robin

“Shapeshifting: Husband to patient, wife to caregiver” (by The Perfect Servant-nope)

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“Shapeshifting: Husband to patient, wife to caregiver” (by The Perfect Servant-nope)

A wife whose husband has Parkinson’s Disease blogs under the name “The Perfect Servant.”  She blogs on a site called “Medium.”  On that site, her name is “The Perfect Servant-nope.”  (You might want to follow her there – medium.com/@galisteoliz.)

Another site, “The Caregiver Space,” picked up today’s blog post about “shapeshifting,” where her husband has transformed into a patient and she has transformed into a caregiver.

Here’s a link to the blog post:

thecaregiverspace.org/shapeshifting-husband-to-patient-wife-to-caregiver/

Shapeshifting: Husband to patient, wife to caregiver
by The Perfect Servant
Apr 6, 2017
The Caregiver Space

Many of her feelings will be familiar to us all.

Robin

“Communicating Effectively with Others” – chapter 3 of “Caregiver Helpbook”

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“Communicating Effectively with Others” – chapter 3 of “Caregiver Helpbook”

A course called “Powerful Tools for Caregivers” was developed by an organization in Portland.  You can read general info about the self-care education program for family caregivers at powerfultoolsforcaregivers.org.

As part of the course, class participants receive a copy of a book titled “The Caregiver Helpbook.”  The book is available in both English and Spanish.  Brain Support Network volunteer Denise Dagan is reading the book and will be sharing the highlights, chapter by chapter.

The title of chapter three is “Communicating Effectively with Others.”  Topics addressed include listening, assertive communication, and Aikido-style communication.

This chapter contains lots of useful worksheets.  You’ll need to purchase the book ($30) to obtain the worksheets.

Here’s Denise’s report on chapter three.

Robin
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Notes by Denise

The Caregiver Helpbook
Chapter Three – Communicating Effectively with Others

Listening well is at the heart of good communication and it takes conscious effort.

Good listening tools include:

* Keep an open mind.  Shift your assumptions about another person’s motives or behavior.
– If someone is annoying you, they are probably doing the best they can given limitations of illness, or communication.
– If someone doesn’t seem able to communicate due to a stroke or Parkinson’s disease.  Given time to formulate a reply, they may have a lot to say.

* Reduce listening barriers.
– Ensure you are in a quiet space that’s free of distractions.
– Consider postponing an intense conversation until all parties are rested, fed, and hydrated.
– If strong emotions distract from listening, address those first by asking, “Are you feeling…?” and/or postpone the conversation until parties are calmer.

* Create a safe haven for openness.
– Assure the person you are speaking to that you want to hear their point of view without judgement or anger.
– Make certain all concerns have been heard, even encourage bringing up sensitive issues by asking, “What troubles you that we haven’t touched on, yet?”
– Deal with emotions before addressing problems to be solved.  “Tone of voice and how loudly, softly, quickly, or slowly a person speaks often reveals his true feelings.”  Reflect feelings back with, “Are you feeling…?”

* Confirm what you hear.
– Ask open-ended questions like, “Give me an example of…,” or “Could you tell me more about…”
– Paraphrase, or restate what you heard them say like, “Are you saying that…?” or “Is it that you feel…?”
– Be aware words like “may,” “might,” “perhaps,” “ordinarily,” “perhaps,” and “maybe.”  These disclaimers indicate a ‘but’ belongs on the end of the sentence.  Ask for explanations, “What do you mean by, ’the treatment may help?”

* Give your undivided attention.
– Stop what you’re doing.
– Reduce distractions.
– Use good eye contact.
– Encourage people to speak with short comments like, “I see,” “um-hum,” and “right.”

To become a more effective listener, apply “The Golden Rule of Listening.”  It says, “Listen to others as you would have them listen to you.”  If you do this, your listening effectiveness should improve.

The flip side of the communication coin:  Expressing yourself effectively.

“Some caregivers hope and hint, rather than ask for help or set limits.  To avoid feeling hurt and to be fair to others we have to communicate directly.  Assertiveness is a specific, direct communication tool for expressing ourselves.”

A worksheet on page 51 will help you determine if you need to work on being more assertive.

“I” Statements are the foundation of assertiveness.
– Starting a statement with “You” can sound blaming or bossy, as in, “You didn’t,” “You said,” or “You should.”
– Use “I” statements to own your feelings, thoughts, concerns, needs, and motives, and clarify where you stand.
– Say, “I feel…,” “I need…,” “I am frustrated…,” “I expect…,” or “I am worried about…,” etc.
– It’s less contentious and you are respecting the rights of others to disagree and express themselves.

The trick is to catch a “you” statement before you say it.  Take the “oops” challenge.  Every time you are about to say “you,” think, “Oops!” and change the “you” to “I.”

There is an exercise on page 49 to practice changing “You” to “I” statements, and more about their use.

The Four Steps of Assertiveness.  Page 53 has a worksheet to practice assertive “I” statements.

1. Describe:  Use “I” statements to describe what happened or what is bothering you without emotion, evaluation, or exaggeration.  Example:  “I received a call from Dad’s doctor yesterday.  He missed his appointment.  I’m wondering what happened.”

2. Express:  Use an “I” statement to express how you feel.  Example:  “I’m concerned Dad won’t make the appointment hat has been rescheduled for next Thursday.”

3. Specify:  Use an “I” statement to tell the other person specifically what needs to happen or what needs to be done.  Example:  “I need to know if you can pick Dad up and take him to the doctor next Thursday morning.  He has to be there by 10am.”

4. Consequences:  Close with an “I” statement explaining what you will do or what will happen if the person does and/or does not follow through.  Avoid blaming, bluffing, or threatening.  Examples:  “If you can’t take Dad, he will have to hire a cab, which puts a strain on his budget,” or “If you can’t take him, would you please make other arrangements for his transportation?” or “I’ll be happy to take him next time if you can take him to this one.”

An alternative style of communication is Aikido, “patterned after the principles of the aikido martial arts.  These principles state that rather than fight with another person, you try to move with the person’s energy.  This is called alignment…”

“Aikido regards anyone who behaves aggressively as “not balanced.” … The goal is to help the person regain balance by meeting some of his needs. … Use your energy to look at the situation from his perspective, not to fight back or give in.  You try to help the other person feel heard so he has no more reason to argue or resist.”  Then, you can move toward problem solving.

To use the Aikido style, follow these steps:

1. Align.  Empathize and build rapport.
– Especially in emotionally charged situations, you may have to use a breathing exercise to stay calm and focused.
– While you’re breathing, ask yourself, “How would I feel in his/her place?” and “What does he/she need from me to feel better?”
– Then, as him/her, “I don’t know exactly what you need.  Give me an example of something I can do for you,” or “I want to understand your point of view about…”

2. Agree; find areas of common ground to support alignment.
– Listen for goals, feelings, needs, and motives you share.  Then,
– State agreement like, “I share your concerns about …,” even just, “If I were you I would feel the same way.”

3. Redirect energies to focus discussion on the goals and concerns you share.
– Example: “We both want to do what is best.  Now, all we have to do is…,” or “I believe we agree we have a problem.  What do we need to begin working on it?”

4. Resolve problems by using “I” messages.  Remember, you may have to compromise or “agree to disagree.”
– Example: “I can learn from your experience.  What would you do about…?”

“You can also use alignment as a tool to encourage people to cooperate with a treatment or accept help.”  Aikido communication gets both parties to the point of finding common ground, listening to each other, and problem solving together to overcome obstacles to treatment or accepting help.