Lewy body dementia: The caregiver experience of clinical care

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Lewy body dementia: The caregiver experience of clinical care

Background

Lewy body dementia (LBD) is the second most common cause of dementia, however,

little is known about how the clinical diagnosis of LBD is obtained in the

community or the caregiver experience while seeking the diagnosis.

Methods

The Lewy Body Dementia Association (www.LBDA.org) conducted a web-based survey

of 962 caregivers over a 6-month period.

Results

The mean age of respondents was 55.9y; 88% were female and 64% had daily contact

with patients. The mean age of LBD patients was 75.4y; 62% were male and 46%

lived with a caregiver. The most common presentation of symptoms as reported by

LBD caregivers was cognitive (48%), motor (39%) or both (13%). The first

diagnoses given to the patients were Parkinson disease or other movement

disorder (39%), Alzheimer disease or other cognitive disorder (36%), or mental

illness (24%). Fifty percent of patients saw >3 doctors for more than 10 visits

over the course of 1 year before an LBD diagnosis was established. Neurologists

diagnosed most cases (62%), while primary care providers diagnosed only 6% of

cases. No differences were found between the presentation of disease and the

number of physicians, number of office visits, length of time to establish

diagnosis, or type of doctor who finally made an LBD diagnosis. Caregivers

viewed physicians 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.

http://www.prd-journal.com/article/PIIS1353802010000738/abstract