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New paradigms for guiding research, interventions and policies for family caregivers

ISSN 1360–7863 print/ISSN 1364–6915 online/01/02S052–04 © Taylor & Francis Ltd DOI: 10.1080/13607860120044819 The Alzheimer’s Association has made an important contribution to family care-giving research by drawing attention to the need to sharpen and enhance its policy and programmatic relevance—particularly for families caring for a loved one with Alzheimer’s disease. For many years, a significant proportion of family care-giving research has focused on the discrete factors contributing to burden, stress and burnout. The papers on family and household issues, written by Fortinsky and Montgomery, broaden past research traditions by examining how the context for care-giving can be linked to caregiver behaviors and outcomes. The papers recommend that new caregiver policies and program interventions be informed by a deeper understanding of what each actor in the caregiver/care recipient relationship brings to their daily interactions with one another. The papers explore these issues from very different perspectives. Fortinsky’s paper examines existing research on the interactions that take place between primary care physicians, family caregivers and the Alzheimer’s patient. He argues the need for caregiver support programs and policies that promote increased physician involvement with the families of Alzheimer’s patients. He hypothesizes that physicians are uniquely suited to helping these families because they are usually the first and only point of contact the family will have with the health care system. The main thesis of Montgomery’s somewhat broader paper is that the relevance and practical application of care-giving research will be strengthened by developing a deeper understanding of the role relationships between caregiver and care recipient. She advances the proposition that a better understanding of the total care-giving context and its consequences for caregiver behavior and outcomes will lead to more effective intervention strategies. Each of these papers could be considered as “alerts” that the time has come to move research on informal care-giving toward new lines of inquiry that are both pragmatic and intervention oriented. Each of the authors puts forth the simple proposition that a better understanding of the roles, relationships and incentives characterizing the various players who provide and receive care will lead to more effective caregiver support programs and policies, and improved outcomes for care recipients and care givers. As Montgomery notes, sometimes the objectives of these interventions may be to get less out of caregivers rather than more. Fortinsky’s paper develops an important and largely unexplored avenue for research on family caregiving—the role of physicians in helping families cope with and support their family member with Alzheimer’s disease. Fortinksky’s analysis suggests that if the physicians role, now largely limited to diagnosis, were broadened to include helping family caregivers understand the Alzheimer’s disease process, manage it’s symptoms and locate other formal community supports, patient and caregiver outcomes would be improved. This analysis raises research and policy issues that need to be further explored. What is the evidence that physicians can make a positive difference to families and to the individual with Alzheimer’s disease around psychosocial dimensions of care-giving? As the author points out, little past research has actually explored interactions between physicians, individuals with Alzheimer’s disease and their families. At a minimum, it would seem important to test Fortinksy’s hypothesis by conducting additional systematic studies of the natural environment in which physicians and families now interact around issues of Alzheimer’s care. How much and what types of non-medical support is actually provided by physicians to their Alzheimer’s patients, under what circumstances and with what impact? While common sense might argue that physician involvement in the non-medical care of Alzheimer’s patients is important to both patient and family, the barriers to achieving this objective are formidable and the incentives are lacking. The culture of medicine is focused on curing. Unfortunately, chronic illnesses such as Alzheimer’s cannot yet be cured, and in many cases, cannot even be significantly ameliorated through better medical treatment. As more treatment modalities for Alzheimer’s disease emerge, such as improved drug regimens, physicians will likely become more interested in assuming a larger role in the care management process. In the meantime, there is some evidence, even if not well codified or