In JHTR 19(4), issue editor Dr Ramon Diaz-Arrastia has meticulously selected 4 papers concerned with the long-term neurologic complications of traumatic brain injury (TBI). Hudak et al elegantly demonstrate the value of newer diagnostic techniques as applied to a population of medically intractable epileptics. O'Suilleabhain and Dewey Jr review their experience of movement disorders within the context of a large movement disorders clinic. Although incidence of TBI-related movement disorders at this clinic was small, the long-term consequences could be quite disabling and challenging to manage. In contrast to many previous cross-sectional studies, Hammond et al present a longitudinal study that examines a prospective cohort of persons with TBI in whom communication, cognition, and social measures were systematically tracked over 5 years. Among many interesting findings based on FIM scores (see article), memory and problem-solving measures improved from Year 1 to Year 5 but decline was observed for social interaction, a finding consistent with many previous studies that had indicated an increase in social and behavioral problems after TBI over the long haul. Finally, Bushnik et al review medical and social issues related to posttraumatic seizures (PTS) and tell us that the impact of a seizure disorder extends far beyond the medical need for seizure control. In particular, there are long-term cognitive difficulties and consequences for physical and mental health (such as depression and anxiety) that persons with epilepsy face. Bushnik and colleagues report that many people with epilepsy experience disablement secondary to inaccurate social perceptions. Negative public perceptions regarding the ability of persons with epilepsy to participate in community life is also a barrier for many persons with epilepsy. "The ability to fully participate in the community is profoundly impacted by epilepsy, not only due to the physical and mental health impairments already discussed, but also due to stigmatization by the community at large that influences the individual's ability to socialize with friends and family, seek or hold employment, and drive a vehicle." As Arrastia-Diaz states in his Preface: "Data presented and reviewed by Bushnik et al should stimulate new studies on this important [psychosocial] issue." In fact, Arrastia-Diaz indicates that every article in JHTR 19(4) points to a "next step" research project that will help the field advance.

From my perspective, JHTR 19(4) makes it clear that long-term neurological complications are frequently accompanied by unwanted social consequences for the individual with TBI. But what of the families who often must bear the social burden of long-term neurological complications? In this issue, Hammond et al review the studies of Oddy 1 and Thomsen 2 which point out that significant caregiver stress was an important long-term occurrence in those families whose members had experienced a severe TBI. Individuals with the most severe disability showed the least improvement over time in social isolation and caregiver stress. What happens to aging family caregivers? Who takes over the care? How is the "succession problem" handled? This is an issue not much discussed in the literature but the problem is out there. In a recent public article 3 discussing adults with severe developmental disability, we get a glimpse of the lives of aging families who have devoted themselves to caring for an individual with a long-term neurological disability at home-initially as a disabled child, later as a disabled adult. The major story discussed by the author concerned a 49-year-old adult with autism cared for by an aging father. The mother of this individual cared for her son at home until she developed Alzheimer's disease. At that point, the father assumed total care of his son and for a period of time cared for both son and wife in their apartment. Now, at age 84, the father's greatest concern is what will happen to his son when he dies. Although the father doesn't have any major medical illness, he does have to deal with aging issues. "He shuffles when he walks, wears a hearing aid and has arthritis, which swells his hands and causes pain in his back. 'Eighty-four is getting up there,' he says. 'The hard part is that it's going to be harder on him than on me.'" The author goes on to point out that after a lifetime of caregiving, a generation of parents, like the father above, were coming to the realization that age would no longer let them take care of their disabled children.

During the 1950s and 1960s, these pioneering mothers and fathers were among the first to shun institutional care, insisting on a place for their children in society rather than on its fringes. They were a major force behind laws requiring schools to allow disabled children into mainstream classrooms or to set up special programs for them. In raising their children at home, these parents had little support from outside organizations, leaving them largely on their own to be parent, nurse and teacher for children with then-baffling conditions. They saved the government hundreds of millions of dollars in expensive care. They also set the standard that subsequent generations of parents have embraced. Today, about 76% of the 4.3 million people with developmental disabilities live at home, a quarter of them cared for by a family member who is at least 60 years old. Most of the rest live in supervised settings or on their own."

With the survival of 80,000 people with severe brain injuries annually, the prevalence of individuals with severe disability cared for by family members at home grows annually as well. As family caregivers age, they face similar problems experienced by aging parents of adult children with developmental disabilities. What is the size and scope of this problem? It surely isn't small. In my opinion, the "succession problem" is another worthwhile research arena that emerges, by inference, from this issue on long-term neurologic complications of TBI.

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