In the past five years Alzheimer's disease has become a household word. With the recognition of the dementing illnesses has come a better understanding of their effect on the patient and on the patient's family. We are developing new skills in helping both patients and families. We know more about the role of medication in adding to a patient's confusion, and we have become much more sophisticated about the need for a diagnostic workup. Ten dementia centers have been designated, and they are already involved in research into the basic biochemical characteristics of the illness. What then are some of the challenges for the next decade? What questions should we be asking ourselves?
Of course, the developing research offers great promise, but it may be that we will still be faced with the challenges of caring for Alzheimer's patients for some time. To do this well, good health service delivery research is urgently needed.
Do victims of Alzheimer's disease or their families need different services than do other elderly persons with disabling conditions? These patients require constant supervision. They are often ambulatory and yet have poor judgment. They have limited ability to attend to or remember instructions. Do these and other characteristics mean that services for them must be different? Or are good skills in patient care much the same for all of the chronic disabling illnesses of late life?
Related to this question is the question, Are these patients more difficult for care givers than persons who are disabled but not cognitively impaired? Care giver organizations sometimes make this claim. Is the mental disability harder for families to bear? Studies are needed to compare the care tasks and the experience of burden by diagnosis.
What is the standard of the best possible care in any setting? What can we expect to see in a good setting? Are some kinds of care these patients receive actually improving their function or are those patients who show improvement easier patients to begin with? Is there anything that can be done for these patients, and if so, which ones?
Should patients be sent to day care? Which patients are most likely to benefit from day care? Which activities work best with these patients? At present the answers are confusing. Some day care centers have a waiting list, others are in danger of closing for lack of participants. A high percent of people with dementia drop out of day care after a few days, but anyone who visits a day care program that serves people with dementia will enthusiastically report on how well some patients do. How can we predict which patients will do well?
For those patients who need a fulltime residential setting, what is the best choice? Is traditional nursing home care the best answer? After all, nursing homes have a long history of caring for these people. Can modifications be made in residential care that makes it better for these patients? At present nursing homes are trying a variety of changes and reporting that their residents are doing well.
Also important are the questions of how much these forms of care will cost and who will pay for them. If special types of care are developed such as in home respite, short-term residential respite, boarding homes, or special programs within day care or nursing homes, what sort of standards should be established for quality of care?
At present, these are questions that, for the most part, have no answers. Clinical experience is generating a variety of ideas, some of which are contradictory. Our next step is to try these ideas with other patients and other staff, to compare groups of patients, and to document changes.
The questions posed are just a few of those that face us as we move into the next decade of care of the dementia victim. They offer exciting possibilities to those interested in quality patient care as well as to those interested in research.