The concept of patient advocacy in its current form was developed in 1950’s as the treatment of cancer patients grew more and more technically complicated, as a means to make the voice of the patient more readily heard. In today’s world of constantly evolving medical techniques, treatments, and services, the average individual cannot be expected to be thoroughly acquainted with any and all this material. So it becomes the function of the Alzheimer’s disease patient advocate to perform a variety of services to ease the burden of the patient, and their family, as they learn to deal with every aspect of the disease.
The primary concern of the Alzheimer’s disease advocate is to the support the patient in all aspects of life with the disease, whether they be physical, emotional, or financial. An advocate can assist the patient and their family in investigating treatment options available, and educating the patient, and their caregivers, on the efficacy of each of them. Since Alzheimer’s is an incurable disease, treatment may be pharmacological in nature, with the addition of therapy as the need arises. However, caregiving is of the utmost importance, and the Alzheimer’s disease patient advocate must insure that the family is well aware of the needs of the patient. In the absence of familial caregiving, the advocate must act in the patient’s need, or advise the patient’s legal representative, in making informed decisions about viable courses of action, and the possible side effects and outcomes. Support may also involve recommending counseling services for family members in order to ease their emotional burden, and help them cope from day to day. Alzheimer’s disease patient advocates may also be of assistance in helping the patient, and their caregivers, deal with any physical and mental debilitation resulting from the disease.
Another aspect of Alzheimer’s disease patient advocacy is assistance in navigating the financial aspects of treating the disease. An advocate can act as a liaison between the patient and his or her representative, and his insurance company, assuring that the patient receives any and all benefits to which they are entitled. When one is dealing with a serious disease, it is quite easy to lose track of other aspects of your life. An advocate can help to seek out sources of assistance which can ease the financial burden of the patient and their family.
Education is also a major function of an Alzheimer’s disease advocate. Both the patient, and especially their caregivers, are often in need of information about how the disease will affect their lives, both during its progression, and in its aftermath. Patients must be informed about how their condition will affect their mobility, as well as their diminishing ability to care for themselves. Caregivers need to be instructed in mechanisms, or techniques they must use to cope with the patient’s daily care, such as injections, personal care, calming techniques, etc.
The Alzheimer’s patient, and their loved ones, above everything else, need to know that there is someone in their corner. Someone who will help them find their way through the confusing, and sometimes daunting, world of modern medicine. Someone who will have their best interests in mind as they face challenges presented every day in their struggle to find, secure, and finance the best treatment available.