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Predicting Caregivers' Burdens
By Mary Elina Ferris, MD, Clinical Associate Professor, University of Southern California. Dr. Ferris reports no financial relationship to this field of study.
Synopsis: The burdens on caregivers of cognitively-impaired elderly can be correlated with measurements of the commonly used ADL (Activities of Daily Living) scales, particularly impairments in financial skills.
Source: Razani J, et al. J Am Geriatr Soc. 2007;55:1415-1420.
Thirty-four mildly demented patients (mainly with Alzheimer's Disease) and their caregivers from four sites were paid to participate in this research as part of a larger study of functional status funded by the National Institutes of Health. Caregivers rated the patients with the Instrumental Activities of Daily Living (IADL) scales which measured 13 areas including basic skills (grooming, bathing, feeding) as well as intermediate abilities such as shopping and financial management. They also completed the Caregiver Burden Inventory, which assesses physical, social and emotional burdens, including time demands and social alienation. Patients were observed personally by clinicians using the Direct Assessment of Functional Status (DAFS) in seven skill areas: orientation, communication, transportation, financial, shopping, grooming and eating. All scored highly in eating and grooming scales by observation.
Results showed strong correlations between the caregiver burden and their assessments of the patient's deficits, although the direct observations often gave the patients higher scores than their caregivers. However, in two areas of caregiver burden, time dependence and developmental burden, the observations matched the caregiver's assessment. The greatest reported burden for caregivers was in the areas of transportation needs, disorientation, and lack of financial skills; other impairments in communication, bathing and dressing were less distressing to caregivers.
Although it's obvious that a dependent elderly reltive with dementia can create burdens on their caregivers, this article gives more specific information on which functional impairments are likely to create the most burdens and psychological distress. Using assessment scales that have been validated and are simple to administer, they found that transportation needs, disorientation, and lack of financial skills created the most burdens in time and other restrictions for caregivers. Significant hostility and anxiety were created when caregivers needed to assume the financial responsibilities of the household.
This may reflect the role reversal that occurs when female caregivers need to assume driving and handling finances that they previously had little experience with. More than 75% of caregivers are women between the ages of 35-64, and 70% of all caregivers are relatives who provide care at home. Their self-reported burden correlated with their observations of the patient's functional ability, which often were lower than an objective assessment of ADL's. As the caregiver's stress and burden increased, their perception of the patient's abilities decreased.
This study involved a small sample and involved only mild dementia without much interference in eating and grooming, which could involve even more caregiver burden. Nonetheless, it should guide us in counseling caregivers to anticipate the stress of these deficits, particularly financial management, and seek appropriate assistance for them.