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Research Shows LBD Places High Toll on Families


A few recent research studies, when put together, begin to paint a challenging picture – That patients and families facing LBD need considerable resources and assistance from healthcare professionals and other health-related agencies. The combination of cognitive, motor and behavioral symptoms create a highly challenging set of demands for continuing care.

While there are no definitive answers yet regarding rates of cognitive decline or disease progression compared to Alzheimer’s, the growing body of LBD knowledge reflects anecdotal experiences of LBD caregivers.

Our purpose here is to clarify some of the many challenges, and help prepare families who are just beginning their journey with LBD. With your help, LBDA is embarking on the path of creating resources and networks to meet these challenges.

More Severe Functional Impairment in LBD than AD

In the July, 2006 issue of the American Journal of Geriatric Psychiatry, Dr. Ian McKeith (member of LBDA’s Scientific Advisory Council) and several colleagues published a study comparing the functional impairment in dementia with Lewy bodies (DLB) and AD. Using a number of widely accepted assessment scales to measure functional impairments, motor symptoms and neuropsychiatric symptoms, the results indicated that patients with DLB were more functionally impaired than patients with AD with similar cognitive scores. Both groups had difficulties impacting a wide range of daily living skills including personal and domestic tasks and leisure activities. DLB patients were additionally impaired in self-care skills, including their ability to eat appropriately, clean their teeth, bathe independently, use the toilet, arise unaided, and walk independently. Conversely, AD patients were not shown to be more significantly impaired than DLB patients in any of the functional areas studied.

When comparing neuropsychiatric profiles, significantly more DLB patients experienced hallucinations than AD patients. No other statistically significant differences were noted in neuropsychiatric symptoms in this study.

DLB patients also had more motor difficulties than AD patients, and the total score on motor difficulties was highly correlated to functional impairment in areas of dressing, hygiene, teeth cleaning, bath/shower, toilet, transfers and mobility. Neuropsychiatric scores also correlated with impairment in hygiene, teeth cleaning and bath/shower. For AD patients, however, correlations between neuropsychiatric and functional impairment were noted in dressing, housework/gardening, finances, games/hobbies and transport. Correlations in motor impairment and functional impairment impacted finances, games/hobbies and transport.

The correlation between motor impairment and functional impairments has important implications in clinical care. In addition to treating cognitive and psychiatric symptoms, referral to movement disorder specialists and physical therapists should be routinely considered, as treating motor dysfunction can contribute to the well being of LBD patients and caregivers.

Survival and mortality differences between dementia with Lewy bodies vs Alzheimer disease

In the December, 2006 issue of Neurology, the official journal of the American Academy of Neurology, Monique M. Williams, Chengjie Xiong, John C. Morris and James E. Galvin reported on a study comparing survival and mortality differences in LBD and Alzheimer’s. Dr. Galvin, member of LBDA’s Scientific Advisory Council, summarized the article study for LBDA:

Lewy body dementias (LBD) account for up to 30% of dementia cases. While the clinical progression of Alzheimer’s disease (AD) has been well characterized, with average duration of 8 to 12 years, the clinical progression of LBD has not fully been described. In fact, there are conflicting reports in the literature regarding disease progression, with some studies noting that LBD progression is more rapid than AD (6 years or less) while other reports show no difference. We investigated whether LBD progresses more rapidly than AD to specific clinical endpoints such as nursing home placement or death, and whether the dementia itself progresses more rapidly between AD and LBD. This study included a prospective group of 315 research participants (63 LBD and 252 AD) followed throughout the course of disease to autopsy.

Individuals with LBD were 2 times more likely to die at comparable ages compared with people with AD. The average survival time for LBD was 78 years of age and for AD was 85 years of age. Men were 1.5 times more likely to die sooner than women. After diagnosis LBD had an average survival of 7 years while AD individuals lived 8.5 years. Nursing home placement was similar between LBD and AD, but length of survival after placement was impacted significantly by the presence of depression and parkinsonian signs such as rigidity and gait abnormalities, which were more common in LBD individuals. It was interesting, however that the rate of dementia progression as measured by performance on neuropsychological testing and clinical staging methods did not differ between LBD and AD.

These findings suggest that there is a shorter course in LBD to long term care placement and death, which underscores the importance of accurate diagnosis for patients and families. The greater risk for disease progression for LBD compared with AD in non-cognitive domains also suggests clinically meaningful differences for the two disorders. These differences may also help explain reported differences to therapeutic interventions between LBD and AD. More research is needed to explore how interventions may delay nursing home placement and death in LBD.

Patients with Lewy body dementia use more resources than those with Alzheimer's disease

In the December, 2006 issue of the International Journal of Geriatric Psychiatry, Dr. Fredrik Boström and colleagues in Sweden measured resource utilization in patients with DLB and AD.

DLB patients used more than (the) double amount of resources compared to AD patients. Specifically, DLB patients used greater resources in accommodations (long term residential care), and required more outpatient care, informal care (measured by caregivers’ lost production and lost leisure time), community services and pharmaceutical therapy. AD patients utilized more inpatient care than DLB patients.

The DLB patients had higher costs of care compared to the AD patients regardless of degree of cognitive impairment (measured with MMSE). Interestingly, those DLB patients with MMSE scores lower than 20 (more severe cognitive impairment) did not have higher costs of care than those DLB patients with MMSE scores higher than 20. This is probably explained by the DLB patients being very resource demanding already in the cognitively better group. In comparison, cost of care in the AD group increased significantly with decreasing MMSE scores.

Echoing Dr. McKeith’s study on more severe functional impairment especially in self-care, this study showed that DLB patients’ cost of care correlated significantly with dependency in basic self-care and even stronger with instrumental activities of daily living.

Apathy, along with other neuropsychiatric features was measured and found to be higher in DLB patients than AD patients. Cost of care for DLB patients with apathy was almost three times as high as in AD patients with apathy.