tu , ajcis (nHb>>. *l> , BISObfc. 0273 fllMb a EXECUTIVE OF ELDER AFFAIRS OFFICE 9 8 Principles of Caregiving and Resources for Caregivers CID£R <— Affairs MICHAEL S. DUKAKIS Paul J. Lanzikos GOVERNOR secretary" ROBERT L. MOLLICA ROBERT CHAMBERS ASSISTANT SECRETARY DIRECTOR, ALZHEIMER'S FOR POLICY AND PLANNIN6 INFORMATION OFFICE Dear Reader: Alzheimer's Disease is the most prevalent and the most devastating, dementing illness of the aged. It is a little known but surprisingly common disorder that affects the cells Q'f the brain. This disease has produced intellectual impairment in over 1.5 million American adults. In August of 1984, the State Legislature passed legislation filed by the Executive Office of Elder Affairs creating the Governor's Special Commission on Alzheimer's Disease. Between November of 1984 and July of 1985, when a final report was presented to Governor Michael S. Dukakis and the Legislature, this committee held two public hearings and many subcommittee meetings. Since September of 1985, an office of Alzheimer's Information has existed within the Executive Office of Elder Affairs. The purpose of this pamphlet is to assist family members and other caregivers to gain information as to the resources available to them. For further information please contact the Alzheimer's Information Office at (617) 727-4415 or toll-free at 1-800-351-2299. Paul LanzAkos INTRODUCTION This pamphlet has been prepared for families and others who are caring for Alzheimer's patients at home. It responds to many questions that arise in the course of caring for an Alzheimer's patient, and it offers some concrete suggestions for daily management. An overriding theme is the importance of support from family, friends, and community resources for the primary caregiver. It is important to stress not only patient care, but self-care. The emotional, physical, financial, and social costs are enormous, and this pamphlet has been prepared to assist you in the care that you provide. For further information, call (617) 727-4415 or toll free 1-800-351-2299. ACKNOWLEDGEMENT A major contribution to this pamphlet was made by the Alzheimer's Resource Center of the New York City Department on Aging. Their manual is entitled "Caring - A Family Guide to Managing the Alzheimer's Patient at Home." -1- PRINCIPLES OF CAREGIVING AND RESOURCES FOR CAREGIVERS Any long-term, disabling illness is difficult for the afflicted individual and for family members who are directly or indirectly involved in his/her care. Alzheimer's disease has a profound effect on almost all areas of the patient's and family's lives, interfering with work, social activities, plans for the future, and the activities of daily life that seemed routine, predictable, and enjoyable up to the time of diagnosis. The stress felt by caregivers can at times be overwhelming. Emotional support and assistance with caregiving -- from family, friends, and community resources -- are therefore essential for the optimal functioning of both patient and primary caregiver. Sometimes, help from a professional counselor is valuable. Alzheimer's gradually robs the patient of the intellectual capacity, personality attributes and abilities that once made them who they were. Family members frequently feel cheated and angry about these changes and may feel they no longer recognize the individual who was once a source of support, sexual companionship, guidance, and insurance against the loneliness of old age. Alzheimer's disease has been described as a disease of separation which results in the loss of the patient in bits and pieces. It is difficult to prepare oneself emotionally for the time in the final stage of the disease when many patients are unable to recognize the spouse or child on whom they have been depending for years. When patient and family receive a diagnosis, they learn that the disease is incurable and that the patient will become progressively more impaired. -2- The stress of caregiving is increased by knowing that most Alzheimer's patients may live with the disease for many years, eventually requiring constant supervision and twenty-four-hour-a-day care. Not only will the patient become totally dependent for assistance in such basic tasks as eating and dressing, but may also develop symptoms which are irritating and even frightening to family members. Although there is no cure for the disease and no way to stop the progressive deterioration that characterizes its course, some things can be done to maintain the patient at an optimal level of functioning, and to make ones life as comfortable and enjoyable as possible. There are also ways to make caring for the patient easier on the family. Principles of Caregiving There are no right or wrong ways to care for an Alzheimer's patient, but experience has shown that following certain simple guidelines usually helps both patient and family. You may find the following guidelines, or "principles of caregiving," useful in caring for a relative diagnosed as having Alzheimer's disease: ° Inform yourself about Alzheimer's disease and about the services - available to you and the patient. Knowing something about the disease particularly the typical course and symptoms -- will give you an idea of what to expect, lessen the surprises you'll have to deal with and help you to feel a bit more in control of what's happening. Information will also enable you to provide better care for the patient today and to plan more appropriately for the future. -3- Digitized by the Internet Archive 2013 in http://archive.org/details/alzheimersdiseaseOOmass