Predicting Caregiver Burden from Daily Functional Abilities of Patients with Mild Dementia

Most older individuals with dementia live in the community 1 and often survive an average of 8 years (range 3–25 years) postdiagnosis.2 A number of factors, including age at diagnosis and the severity of other medical conditions, determine average survival time.3 According to a study conducted in 1996 by the National Alliance for Caregiving and the Alzheimer’s Association, more than 70% of caregivers are relatives who provide care at home. Furthermore, approximately 75% of caregivers are women between the ages of 35 and 64. A growing body of literature on the caregivers of patients with dementia indicates that these individuals experience physical, psychological or emotional, social, and financial problems.4 A study5 using a brief screening measure to characterize cognitive impairment in patients with Alzheimer’s disease found that patients’ cognitive scores played a significant role in predicting the amount of time caregivers spent caring for the patient. A number of recent studies have found that caregivers of patients with dementia frequently report physical and emotional distress and that the most common complaints among caregivers include anger, depression, guilt, worry, feeling of isolation, and marital stress.6–13 One study found that caregivers of patients with cognitive impairment who displayed high levels of anxiety and depression also showed high levels of care-giver burden.14 Less research has been conducted examining the relationship between patients’ specific functional impairments and the burden and psychological distress experienced by caregivers. One study15 revealed that scores of dementia patients on the Mini-Mental State Examination (MMSE) and behavioral inventories were related to the burden reported by caregivers. They also found significant associations between caregiver burden and a nonobservation-based activity of daily living (ADL) scale over a 2-year observation period. Similarly, another study16 found that, when dementia severity surpassed a threshold of MMSE ( < 20), the level of involvement with making medical decisions for the patient and burden increased for caregivers. A third study17 found that burden ratings by caregivers of patients with mild dementia correlated more strongly with a caregiver-rated ADL measure than with a rater-observed ADL (patient functional) measure. This suggests that a caregiver’s level of burden may affect his or her perception of the patient’s ability or disability level. The literature suggests that a large number of patients with cognitive impairment dwell in the community and are cared for by relatives who experience significant burden and that there may be a relationship between the patient’s cognitive impairment and functional abilities and the level of caregiver burden. The present study was designed to assess the performance-based and caregiver-rated ADLs of patients with relatively mild cognitive impairment and their relationship to the burden and psychological distress experienced by caregivers. An additional objective was to identify how well specific functional abilities of patients predict caregiver burden.