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

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


13 Responses

  1. Hi David, Thanks for the update. You and your family continue to be in my prayers! 🙂

  2. Hi David,
    Glad to see you are posting! I hope all is well with you and with Pam. I have missed your posts!
    Sending good thoughts and prayers your way,
    Helene in NY

  3. Hi David,

    We have missed your postings and hope that all is going well with you and Pam. Mary Frances is slowly getting more strength from her heart surgery and is in cardiac rehab now. Didn’t have much energy to visit the Solano County Fair this year. We hope it isn’t too hot where you are as it has been unseasonably cold here. Got any tomatoes in your garden this year?

    Hoe and Mary Frances


    I found your entry interesting do I’ve added a Trackback to it on my weblog :)…

  5. An excellent article. And very topical. Caregiver burden is only now beginning to get real attention.

    The contribution you made to my book blesses readers so much!

    Thank you,


  6. David, wonderful to see you here again. Thanks for checking in with a pertinent article.

  7. Hello Dear David and a hello to your dear Pam, also,

    Thank you for posting this, all of which I know too well. But, many people don’t know it, and it pleases me to see you getting the word out.

    I have now finished the roller coaster ride, as my precious Don died in April this year. He was a fine man.

    Now, to verify your article on Caregiver burnout, I am a classic example. My health is going down hill very quickly.

    But, like you I keep on loving and working with what I have.
    Being happy and positive is the best medicine, as you well know and demonstrate all the time.

    My heart is with you and Pam. She is enduring a lot right now. It may not appear to be so on the surface, but she is holding everything together, along with having health problems. Been there and done that, so I send love to both of you.

    May you hold out strong for a long time, and be happy with each day.

    Love a Lot,

  8. […] plan for expected decline in cognition, function and behavior" To read more, head on over to the Knitting Doc site  […]

  9. Dear David,

    Nice to see a post on your site. I hope you and Pam are doing ok. You are both in my thoughts and prayers.

  10. has an updated fact sheet on Dementia with Lewy Bodies –


  12. Facts about Lewy Bodies aren’t enough. Mandate a thorough and in depth educational training curriculum qualifying people who work as Elder Abuse Hotline Workers, Adult Protective Care Workers, Doctors and Nurses, Adult Residential Facility workers from Independent Living through Skilled Nursing, Hospital Personnel in all Departments and especially Emergency Rooms and mandate at least bi monthly updating as research in these areas of the brain are just beginning to provide possibilities.

    Too many people believe there’s only Alzheimers and do not understand the vast differences and challenges with other Dementias, Lewy Bodies and Vascular, in particular.Our family has faced challenges far beyond the norm fighting to get my Mom diagnosed and evaluated; not siblings (there are none): Doctors, Psychiatrists, State Government Officials of the DHSS, Nursing Home Admibistrators and Head Nurses. Lewy Bodies is more than a roller coaster ride, it’s like being in a Fun House with some areas that are normal and others totally distorted.

    Let’s talk about how those with LB often “comingle” memories or even bring in what they see on a TV program and “intertwine” it into their conversations making people believe they know exactly what they’re talking about but anyone who really knows the facts knows how confused and sometimes totally inaccurate what they say can be. We just never know what level of cognition and comprehension are there; often day to day and sometimes numerous times within a day. Let’s share more than “facts”, let’s share experiences we’ve gone through with the challenges of an ever changing mind and body that varies sometimes radically and can even almost totally reverse (except for some of physical challenges like incontinence, etc) or appear not to be present. We’ve been involved with someone who apparently fights a great fight even in her late nineties because she fluctuates (even with a diagnosis of probably mid to late stage ) so dramatically at times.

    I totally agree about the Nutrition factor for LB and Dementia as well as for so many other challenges we face. This area can be controlled at home or when you caregive personally but once they go into a facility, food is usually almost all processed, with additves and very few fresh fruits and vegetables. They have nutritionists but food is expensive and cuts into their bottom line, profit or non profit. Only when we Babyboomers start advocating for more regulations regarding Nursing Home treatment will we begin to see changes.

  13. […] New Report Highlights Delayed Diagnosis and Caregiver Burden in Lewy Body Dementias ( […]

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