LBD Places a High Toll on Families

The combination of cognitive, motor and behavioral symptoms early in the course of LBD creates a highly challenging set of demands for continuing care. Recent studies demonstrate that LBD families need considerable resources and assistance from healthcare professionals and other health-related agencies, possibly even more than patients with AD.

More Severe Functional Impairment in DLB than AD

A cross-sectional study evaluated 84 patients with DLB or AD in a secondary care setting, using the Bristol Activities of Daily Living Scale (BADLS) to assess functional impairments, the Unified Parkinson’s Disease Rating Scale (UPDRS) to assess motor impairments, and the Neuropsychiatric Inventory (NPI) and Mini-Mental Status Examination (MMSE) to assess cognitive function. The study concluded 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 significantly more impaired than DLB patients in any of the functional areas studied. 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.

Survival and mortality differences between DLB vs Alzheimer disease

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. One study investigated whether DLB 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 DLB. The study revealed that individuals with DLB were 2 times more likely to die at comparable ages compared with people with AD. The average survival time for DLB 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 individuals with DLB had an average survival of 7 years while AD individuals lived 8.5 years. Nursing home placement was similar between DLB 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 DLB individuals. These findings suggest that there is a shorter course in DLB to long term care placement and death, which underscores the importance of accurate diagnosis for patients and families.

Patients with DLB use more resources than those with Alzheimer’s disease

Another study compared resource use and cost in patients with DLB and AD, and assessed determinants in cost of care in DLB. In this study, DLB patients used more than double the 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 pharmacological therapy. AD patients utilized more inpatient care than DLB patients. DLB patients’ cost of care correlated significantly with dependency in basic self-care, and even more strongly 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.

Source:  “Current Issues in LBD Diagnosis, Treatment and Research” by James E. Galvin, MD, Bradley F. Boeve, MD, John E. Duda, MD, Douglas R. Galasko, MD, Daniel Kaufer, MD, James B. Leverenz, MD, Carol F. Lippa, MD, Oscar L. Lopez, MD, representing the Scientific Advisory Council of the Lewy Body Dementia Association.  May, 2008