NEW REPORT HIGHLIGHTS DELAYED DIAGNOSIS AND CAREGIVER BURDEN IN LEWY BODY DEMENTIAS

NEW REPORT HIGHLIGHTS DELAYED DIAGNOSIS AND CAREGIVER BURDEN IN LEWY BODY DEMENTIAS

ATLANTA, GEORGIA, USA, July 12, 2010 – Nearly 80% of people with Lewy body dementias (LBD) received a diagnosis for a different cognitive, movement or psychiatric disorder before ultimately learning they had LBD, according to the Lewy Body Dementia Association’s Caregiver Burden in Lewy Body Dementias, released today.

This new report reveals people with LBD and their caregivers face barriers to obtaining an early LBD diagnosis. Caregivers rate specialists and general practitioners as inadequate in discussing disease progression. Additionally, caregivers experience moderate to severe emotional burden, and most experience a sense of isolation because so few people know about LBD.

LBD is the second-most common form of degenerative dementia in the elderly, affecting an estimated 1.3 million people in the United States. Symptoms include dementia, unpredictable variations in cognition, attention or alertness; hallucinations, Parkinson’s-like symptoms, a sleep disorder characterized by physically acting out vivid nightmares and dreams, and a potentially life-threatening sensitivity to certain medications.
“LBD is a family disease, affecting not just the person with LBD but also the caregiver,” said Angela Herron, President of LBDA’s Board of Directors. “This report underscores the challenges presented by a disease that affects cognition, movement, behavior, sleep and mood. Despite the fact that LBD is a common form of dementia many doctors and other medical professionals are unfamiliar with LBD, compounding the burden even further.”

Importance of Early Diagnosis and Physician Awareness of LBD

Half of people seeking a diagnosis saw 3 or more doctors for 10 visits over the course of a year before they were diagnosed with LBD, and diagnosis required more than two years from the onset of symptoms for 31% of cases.

Although prognosis varies among individuals, LBD is often a more rapidly progressive disease than Alzheimer’s disease, and early diagnosis provides families an opportunity to plan for expected decline in cognition, function and behavior. Given the evidence that suggests treatment with cholinesterase inhibitors may benefit patients with LBD more than those with Alzheimer’s disease, barriers to diagnosis have a negative impact on both the patients’ and caregivers’ quality of life. Especially important, early diagnosis of LBD provides physicians with an opportunity to minimize exposure to medications that may aggravate symptoms, such as antipsychotic medications. Nearly 60% of people with LBD may experience severe, potentially irreversible reactions to antipsychotic medications, and in rare cases, a life threatening condition called neuroleptic malignant syndrome may also occur.

LBD Progression Not Adequately Addressed

While neurologists made most LBD diagnoses, caregivers most often relied on primary care physicians for ongoing follow-up care and reported difficulties coordinating treatment of LBD symptoms between primary care physicians and specialists, as medication for one LBD symptom may worsen another being treated by a different physician. Caregivers rated over 40% of both generalists and specialists as inadequate in telling families what to expect in the future, and more than half of physicians as inadequate in suggesting telling the family where to find more information on LBD or community-based resources.
“The lack of information on disease progression is a serious challenge to LBD families,” stated Herron. “It’s essential that families plan in advance for the relentless progression of LBD, and not having answers on what that decline will look like or how fast it may occur, adds significant stress to an already difficult situation.”

Caregiver Burden is Physical and Emotional

Caregivers reported moderate to severe levels of disability in the person with LBD and over 90% had taken over instrumental activities of daily living, like preparing meals, managing medications, transportation, finances and appointments. Over 60% of caregivers indicated the person with LBD could not perform basic activities of daily living, such as dressing or bathing.

People with LBD had high rates of behavioral problems and mood changes and two-thirds of caregivers reported a crisis in the past year that required a hospital emergency room, emergency medical services, psychiatric care, or law enforcement.

LBD caregivers face a number of challenges: social, medical, functional and financial. LBD caregivers feel isolated and often have to respond to crises, but may not be receiving adequate support from family, friends or healthcare providers. These features have the potential to lead to adverse outcomes for the caregiver “burnout” including stress, depression and poor health.
“Poorer caregiver outcomes directly lead to increases in patient institutionalization and declines in quality of life, stated Dr. James E. Galvin, a member of LBDA’s Scientific Advisory Council and Professor of Neurology and Psychiatry at New York University. “This may be particularly important in LBD where patients are at an increased risk of institutionalization and mortality.”

The findings are based on data collected by the Lewy Body Dementia Association (LBDA) in an online survey of 962 LBD caregivers. Designed by Steven H. Zarit, PhD, an expert on caregiver burden in dementia and Professor of Human Development at Penn State University, the survey was conducted over a 6-month period. Dr. Galvin analyzed the survey data, which was published in the July, 2010 issue of Parkinsonism & Related Disorders and the April-June, 2010 issue of Alzheimer Disease & Associated Disorders.

The full text of the Lewy Body Dementia Association’s Caregiver Burden in Lewy Body Dementias can be viewed by visiting http://www.lbda.org.

The Lewy Body Dementia Association

The Lewy Body Dementia Association (LBDA) is the leading voluntary health organization in raising awareness of Lewy body dementias (LBD), supporting patients, their families and caregivers, and promoting scientific advances. LBDA’s Scientific Advisory Council is comprised of leading experts from the United States, Canada, the United Kingdom, and Japan in research and clinical management of Lewy body dementias. To learn more about LBDA, visit www.lbda.org.

Lewy Body Dementia Association TV Channel on You Tube

This is the YouTube location for The Lewy Body Dementia Association.

You’ll find excerpted lectures, and information pertaining to Lewy Body Dementia (LBD) including new trends, difficulties in diagnosing and behavioral challenges associated with LBD.

Please feel free to subscribe to this channel.

Warmly…………….David

Up from the grave he arose

Wow! What an experience I’ve just had. Thing only thing I barely remember last Sunday was that the Steelers won the Super Bowl. The last couple of days had me wondering. I do think it’s the worst I have ever been with the LBD.

I’ve underlined the worst symptoms I had in the following review of LBD which I posted last week.


Lewy Body Dementia Symptoms as explained by the Lewy Body Dementia Association

Dementia is a process whereby the person becomes progressively confused. The earliest signs are usually memory problems, changes in their way of speaking, such as forgetting words, and personality problems. Cognitive symptoms of dementia include poor problem solving, difficulty with learning new skills and impaired decision making.

Other causes of dementia should be ruled out first, such as alcoholism, overuse of medication, thyroid or metabolic problems. Strokes can also cause dementia. If these reasons are ruled out then the person is said to have a degenerative dementia. Lewy Body Dementia is second only to Alzheimer’s disease as the most common form of dementia.

Fluctuations in cognition will be noticeable to those who are close to the person with LBD, such as their partner. At times the person will be alert and then suddenly have acute episodes of confusion. These may last hours or days. Because of these fluctuations, it is not uncommon for it to be thought that the person is “faking”. This fluctuation is not related to the well-known “sundowning” of Alzheimer’s. In other words, there is no specific time of day when confusion can be seen to occur.

Hallucinations are usually, but not always, visual and often are more pronounced when the person is most confused. They are not necessarily frightening to the person. Other modalities of hallucinations include sound, taste, smell, and touch.

Parkinsonism or Parkinson’s Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson’s mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.

REM Sleep Behavior Disorder (RBD) is often noted in persons with Lewy Body Dementia. During periods of REM sleep, the person will move, gesture and/or speak. There may be more pronounced confusion between the dream and waking reality when the person awakens. RBD may actually be the earliest symptom of LBD in some patients, and is now considered a significant risk factor for developing LBD. (One recent study found that nearly two-thirds of patients diagnosed with RBD developed degenerative brain diseases, including Lewy body dementia, Parkinson’s disease, and multiple system atrophy, after an average of 11 years of receiving an RBD diagnosis. All three diseases are called synucleinopathies, due to the presence of a mis-folded protein in the brain called alpha-synuclein.)

Sensitivity to neuroleptic (anti-psychotic) drugs is another significant symptom that may occur. These medications can worsen the Parkinsonism and/or decrease the cognition and/or increase the hallucinations. Neuroleptic Malignancy Syndrome, a life-threatening illness, has been reported in persons with Lewy Body Dementia. For this reason, it is very important that the proper diagnosis is made and that healthcare providers are educated about the disease.

Other Symptoms

Visuospatial difficulties, including depth perception, object orientation, directional sense and illusions may occur.

Autonomic dysfunction, including blood pressure fluctuations (e.g. postural/orthostatic hypotension) heart rate variability (HRV), sexual disturbances/impotence, constipation, urinary problems, hyperhidrosis (excessive sweating), decreased sweating/heat intolerance, syncope (fainting), dry eyes/mouth, and difficulty swallowing which may lead to aspiration pneumonia.

Other psychiatric disturbances may include systematized delusions, aggression and depression. The onset of aggression in LBD may have a variety of causes, including infections (e.g., UTI), medications, misinterpretation of the environment or personal interactions, and the natural progression of the disease.

I’m coming back to myself once again–

Now to start catching up with 1009 emails. I’ll just do it little by little.

Warmly………David

Boys and Sports

First of all, I’d like to thank those of you who’ve already voted for the blog, for all those who’ve made comments and to those of you who like the new blog look. I keep experimenting with different themes………I think I’ll stick with this one. It gives me a few more options which I can use over time. Plus it just seems easier to read.

I thought I’d post a little review on the symptoms of Lewy Body Dementia.

Lewy Body Dementia Symptoms as explained by the Lewy Body Dementia Association

In this section we’ll discuss each of the symptoms, starting with the key word: dementia. Dementia is a process whereby the person becomes progressively confused. The earliest signs are usually memory problems, changes in their way of speaking, such as forgetting words, and personality problems. Cognitive symptoms of dementia include poor problem solving, difficulty with learning new skills and impaired decision making.

Other causes of dementia should be ruled out first, such as alcoholism, overuse of medication, thyroid or metabolic problems. Strokes can also cause dementia. If these reasons are ruled out then the person is said to have a degenerative dementia. Lewy Body Dementia is second only to Alzheimer’s disease as the most common form of dementia.

Fluctuations in cognition will be noticeable to those who are close to the person with LBD, such as their partner. At times the person will be alert and then suddenly have acute episodes of confusion. These may last hours or days. Because of these fluctuations, it is not uncommon for it to be thought that the person is “faking”. This fluctuation is not related to the well-known “sundowning” of Alzheimer’s. In other words, there is no specific time of day when confusion can be seen to occur.

Hallucinations are usually, but not always, visual and often are more pronounced when the person is most confused. They are not necessarily frightening to the person. Other modalities of hallucinations include sound, taste, smell, and touch.

Parkinsonism or Parkinson’s Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson’s mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.

REM Sleep Behavior Disorder (RBD) is often noted in persons with Lewy Body Dementia. During periods of REM sleep, the person will move, gesture and/or speak. There may be more pronounced confusion between the dream and waking reality when the person awakens. RBD may actually be the earliest symptom of LBD in some patients, and is now considered a significant risk factor for developing LBD. (One recent study found that nearly two-thirds of patients diagnosed with RBD developed degenerative brain diseases, including Lewy body dementia, Parkinson’s disease, and multiple system atrophy, after an average of 11 years of receiving an RBD diagnosis. All three diseases are called synucleinopathies, due to the presence of a mis-folded protein in the brain called alpha-synuclein.)

Sensitivity to neuroleptic (anti-psychotic) drugs is another significant symptom that may occur. These medications can worsen the Parkinsonism and/or decrease the cognition and/or increase the hallucinations. Neuroleptic Malignancy Syndrome, a life-threatening illness, has been reported in persons with Lewy Body Dementia. For this reason, it is very important that the proper diagnosis is made and that healthcare providers are educated about the disease.

Other Symptoms

Visuospatial difficulties, including depth perception, object orientation, directional sense and illusions may occur.

Autonomic dysfunction, including blood pressure fluctuations (e.g. postural/orthostatic hypotension) heart rate variability (HRV), sexual disturbances/impotence, constipation, urinary problems, hyperhidrosis (excessive sweating), decreased sweating/heat intolerance, syncope (fainting), dry eyes/mouth, and difficulty swallowing which may lead to aspiration pneumonia.

Other psychiatric disturbances may include systematized delusions, aggression and depression. The onset of aggression in LBD may have a variety of causes, including infections (e.g., UTI), medications, misinterpretation of the environment or personal interactions, and the natural progression of the disease.

All right now. Enough of some serious material. Now it’s time to play. These are the kind of puzzles which make me feel really smart. The more I do, the smarter I feel. I hope they help you just as much.

Boys and Sports
by Shelly Hazard

Wilma and three other women were comparing notes about the achievements of their sons. Each son had a favorite sport and each was a star player. The boys ranged in age from 10 years old to 13 years old. Determine the full name of each mother, the name of her son, the sport each son played, and how old each son was.

1. Sara Copper’s son, who wasn’t Brian, didn’t play soccer.

2. The boy who played basketball was the youngest. Mrs. Green’s son was a year younger than the boy who played baseball but a year older than Sara’s son.

3. The oldest boy, who wasn’t Mark, was Sharon’s son but he didn’t play hockey.

4. The boy who played baseball was a year older than the boy who played hockey.

5. From youngest to oldest, the boys were Mark, Teresa’s son, Mrs. Silver’s son, and Eric.

6. Mrs. Wild’s son was two years older than Chris.

boyandsports1

boysandsports2

Click here for the Solution

Warmly………David

Spanish Version – An Introduction to Lewy Body Dementia

The Lewy Body Dementia Association has introduced a Spanish Version of Introducción a la Demencia por Cuerpos de Lewy.

Esta es una publicación especial para las personas a quienes recientemente se les ha diagnosticado la demencia por cuerpos de Lewy (DCL) y para quienes todavía están buscando respuestas.

A PDF copy can also be downloaded for home printing.

Powerful and Inexpensive Christmas Presents

Angela Taylor

Angela Taylor

I am becoming more impressed each time I visit the Tangled Neuron blog. The amount of work involved to make this very informative and accurate blog is astounding. The blog mentions Angela Taylor whom I’ve had the great pleasure of speaking with. She is the chair of the of the Science Committee for the Lewy Body Dementia Association. She is warm, sensitive, caring and has made LBD a platform in her life. Thank you, Angela. You efforts will not go unrewarded!

 

The Best Christmas Presents

This time of a poor economy, many people are spending less money on others at this Christmas season, particularly those who live on a limited budget. This tends to breed feelings of helplessness and guilt.

It is also a time when the weight of grief seems heavy. This may be the first Christmas without a loved one or friend. It may be the first Christmas where a loved one is still with you but you have ‘lost’ them to dementia.

We all need comforting when grief overcomes us. We tend to have fond and sweet memories of those who took time, always in short supply during the holidays, to bear some of our burden. Is someone you know experiencing a difficult first this Christmas?

You can offer comfort and encouragement by reaching out with loving and sweet remembrances. Not only for a close friend or family member, but reaching out to neighbors, church members, coworkers and even casual acquaintances that are facing a difficult time of transition is important. The simplest gestures you make during the emotional holidays will be sweet to them.

 

  1. First, one of the best ways to minister to those around you is through prayer. It doesn’t cost you any money. It is powerful. Put the person’s name or picture on the refrigerator and pray during the holidays.
  2. Not only can you pray for your friends, but perhaps you could drop them a note or e-mail to let them know you are doing so! Also, use your note to give a word of encouragement. God entered the world that first Christmas to carry a burden we could not carry ourselves. What a wonderful season to do the same for others.
  3. Don’t be afraid to mention the person they have lost. Nothing is worse than thinking everyone has forgotten the one you loved.
  4. Mention specific memories you have of that person.
  5. Light a candle or place flowers at the front of the church in their loved ones memory.
  6. Be available and a good listener. Consider an invitation to lunch or coffee. So many people avoid the subject of grief that you may find your friend is longing to talk with someone about what they are going through. “How are you really doing?” and “This must be a difficult time for you” are good open ended questions which permit them to openly talk.
  7. Send a note to children who have lost their grandparents. A good time would be when they accomplish something their grandparent would have enjoyed seeing. Remind them how proud their grandparent was of them.
  8. Encourage other friends to mail notes throughout the Christmas season.

 

Warmly……….David

Update from the Lewy Body Dementia Association

This is from the LBDA’s email update to me yesterday:

Greetings!

 The Fall 2008 Issue of the Lewy Body Digest newsletter is now available. In this issue you will find:

- News of an LBDA publication for people newly diagnosed with LBD and those still seeking answers

- A great story on how the right treatment for LBD can improve the quality of life

- A reported breakthrough in LBD scientific research

- And much more!

Please visit us online today to view the Fall 2008 issue of the Lewy Body Digest. Click on http://www.lbda.org/category/3477&cfid=117027-lbda-newsletter.htm where you can view, download and print this issue, as well as previous issues of the Lewy Body Digest. We hope you enjoy this edition of the Lewy Body Digest!

Warm Regards,

The LBDA Team

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