LBDA Survey Examines Caregiver Burden

April 1, 2009 - LBDA original research on caregiver burden families affected by Lewy body dementia will be highlighted throughout 2009:

American Academy of Neurology

  1. Exhibit: LBDA will be exhibiting at the American Academy of Neurology’s annual meeting in Seattle, Wash., from April 27 – April 30, 2009. Physicians are encouraged to visit us at Booth #948.
  2. Poster session awarded to on LBDA’s Caregiver Burden Survey at the annual meeting of the American Academy of Neurology in Seattle, Wash., on April 30, 2009.

Session Title: P09: Poster Session IX - Aging and Dementia: Epidemiology
Date: April 30, 2009
Start Time: 4 p.m.
Duration: 3 hours
Room: Poster Hall

James E. Galvin, MD, MPH1; John E. Duda, MD2; Daniel I. Kaufer, MD3; Carol F. Lippa, MD4; Angela Taylor5; Steven H. Zarit, PhD6

1Department of Neurology, Washington University, St Louis, Mo
2Department of Neurology, University of Pennsylvania and Veterans Affairs Medical Center, Philadelphia, Penn.
3Department of Neurology, University of North Carolina, Chapel Hill, N. Car.
4Department of Neurology, Drexel University College of Medicine, Philadelphia, Penn.
5Lewy Body Dementia Association, Atlanta, Ga.
6Department of Psychology, Pennsylvania State University, University Park, Penn.


OBJECTIVE: To investigate prevailing knowledge and practice regarding the diagnosis and management of Lewy body dementia (LBD).
BACKGROUND: LBD is the second most common cause of dementia. Whereas most research on LBD has focused on disease mechanisms, little is known about how LBD is diagnosed and managed in clinical practice.
METHODS: The Lewy Body Dementia Association ( conducted a Web-based survey of 962 caregivers over a six-month period.
RESULTS: The mean age of respondents was 56.2 years; 87 percent were female and 63 percent had daily contact with patients. The mean age of LBD patients was 75.4 years; 63 percent were male and 47 percent lived with a caregiver. The most common initial symptoms reported were cognitive (48 percent), motor (39 percent), or both (19 percent). On average, 50 percent of patients saw more than three doctors for more than 10 visits over the course of one year before diagnosis was made. Neurologists diagnosed most cases (65 percent), while primary care-providers diagnosed only 6 percent of cases. Patients were given another diagnosis in 75 percent of cases (39 percent Parkinson’s disease, 36 percent Alzheimer’s disease, 32 percent mental illness). Once diagnosed, however, most patients were managed by primary care providers. The majority of caregivers viewed physicians (both diagnosing and treating) as knowledgeable about disease manifestations and treatment options, but not about disease course/prognosis and available community resources and referrals.
CONCLUSIONS: These data highlight a need for increasing physician awareness and knowledge of LBD, which will facilitate accurate diagnosis and treatment. Community resources such as the Lewy Body Dementia Association may serve this end, while also providing practical information and support for caregivers.

American Geriatrics Society
LBDA will exhibit at the annual scientific meeting of the American Geriatrics Society from April 30 to May 1, 2009, in Chicago, Ill. LBDA Development and Outreach Manager Caite Schulz will represent LBDA

Abstract Now Available
Oral presentation made at the 6th International Congress on Mental Dysfunctions and Other Non-Motor Features in Parkinson’s Disease in Dresden, Germany, October 16-19, 2008

James E. Galvin, MD, MPH; John E. Duda, MD; Daniel Kaufer, MD; Carol F. Lippa, MD; Steven H. Zarit, PhD; Lewy Body Dementia Association

Lewy body dementia (LBD) is the second most common cause of dementia. To date, little is known about the challenges that LBD caregivers face or how to best provide resources to alleviate burden. The Lewy Body Dementia Association ( conducted a Web-based survey of 962 LBD caregivers (mean age 56.2 years, 87 percent female, 47 percent still residing with patient) to ascertain unmet needs. Caregivers reported frustration the delay in getting an LBD diagnosis, specifically in the number of doctors (more than three in 68 percent of cases), number of office visits (more than seven in 59 percent of cases) and length of time (more than 18 months in 40 percent of cases) before an LBD diagnosis was made. Although a neurologist finally made diagnosis in 62 percent of cases, alternative diagnoses were first given in 78 percent cases. Caregivers expressed concerns about fear of future for loved ones (77 percent), feeling stressed (54 percent), loss of social life (52 percent) and uncertainty about what to do next (50 percent). Caregivers reported moderate to severe burden (72 percent); 80 percent felt the people around them did not understand their burden and 54 percent reported feelings of isolation. Only 29 percent of caregivers had hired in-home assistance while less than 40 percent used respite or adult day care, attended a support group meeting or contacted a geriatric case manager. This lack of service utilization occurred even though more than 66 percent had faced a medical crises the required a trip to the emergency room (81 percent), psychiatric care (17 percent), or a call to law enforcement (8 percent). Caregivers reported desire for increased access to web-based information (76 percent), a directory of providers with expertise in LBD (66 percent) or long-term care facilities that took LBD patients (62 percent), information on medical research in LBD (61 percent) or local support groups (57 percent). These findings highlight significant unmet needs for LBD caregivers and provide potential targets for intervention to reduce caregiver burden.