Families, Caregivers, and Assistance
By definition, those with DLB or PDD are cognitively impaired. The degree of cognitive impairment is highly variable; some people remain relatively compensated and stable for years. For others, confusion impairs even the simplest of activities. Unlike Alzheimer’s disease, in which dementia occurs in isolation, DLB and PDD are often associated with other problems: gait and balance dysfunction; impairment of hand dexterity; the bowel, bladder, and blood pressure problems of dysautonomia. The challenges to not only the affected person, but also the spouse or partner and family can be substantial. Caregivers may have many responsibilities, and restructured lives become the rule. These issues are so variable that a one-size-fits-all approach is not realistic. Once DLB or PDD has been diagnosed, it is wise for the spouse, partner, or family to discuss with the affected patient whether revisions in decision-making should be addressed. Occasional people with DLB or PDD have relatively limited cognitive problems, and for these individuals perhaps no major changes in the family business or finances are necessary. However, this issue should still be discussed. Investments, taxes, and bill-paying may need to be switched to another family member or spouse. A family business may need new leadership. In some cases, leadership positions may be retained, but with an advisor who reviews all important decisions. When there is uncertainty, formal cognitive testing may provide important insight. Psychologists typically offer psychometric testing, assessing various aspects of cognition. The interpretation of these findings can be translated into implications for decision-making. One of the most disabling restrictions placed on someone in our society is the removal of driving privileges. Communities are no longer structured where one can simply walk to the store, church, or synagogue. In the setting of DLB or PDD, however, driving restrictions or limitations may be appropriate. At least the possibility should be discussed. Driving may be compromised by both cognitive impairment and parkinsonism. Usually it is the cognitive problems that are the greater threat to the driver and public safety.