Alzheimers Disease Patient Advocate, Navigator or Health Advocate
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.
What is Alzheimer's and Dementia Care?
As the symptoms of Alzheimer’s progress, the person becomes more emotionally fragile. At first, there may be the sense of grief and dread that accompanies the awareness of having a progressive terminal illness. During this early stage of the disease, caregivers can promote the patient’s sense of well being by providing emotional support and by helping to maintain familiar activities and social contacts. Eventually though, the diagnosis of Alzheimer’s is forgotten and the ability to be rational fades. Logical thinking can no longer be used to help alleviate fear and confusion. As problems with memory and judgment increase, the patient becomes more vulnerable to accidents and injuries. Problem behaviors develop that place the person at increased risk of getting lost or getting hurt. Caregivers must hone communication skills and make changes to the home environment in anticipation of the problems of mid-stage Alzheimer’s disease. Following are some tips for promoting physical safety and emotional comfort.
For many caregivers, the time will come when they are no longer able to take care of their loved one at home. At this point the person with Alzheimer's disease will have to move to a place where care is available around the clock. There are two types of residential care: assisted living and skilled nursing facilities.
Criteria for a Good Alzheimer’s Care Facility
Some facilities claim to specialize in treating the elder with Alzheimer's disease or other dementia, but not all of them excel in this kind of care. Those that do excel tend to be very expensive. If you cannot afford such care, look for a facility where you and others can visit frequently and assist with your loved one’s needs. Ideally you’ll find a facility where the following criteria are met:
- Caregivers help patients get ample movement. If the patient can move on their own, caregivers help the person to get out of bed. Otherwise, caregivers move the person within their bed and around the facility, particularly outside.
- Caregivers appear to truly enjoy what they are doing. Many cultures have a tradition of gracefully and generously caring for elders. Look for facilities where many of the caregivers are from cultures that treat elders with love and respect. Also consider facilities supported by religious organizations because the high proportion of volunteers may ensure more willing caregiving.
- Care is culturally and linguistically specific. It is best to have caregivers who interact with the patient in the patient’s own language. Many patients revert to their native language in the later stages of Alzheimer's, and caregivers must adjust accordingly. Check for cultural sensitivity in how personnel care for patients.
- Patients with dementia live together. Dementia patients should be cared for together with other patients in a group setting. Studies have shown that the social aspects of a group are beneficial to patients with Alzheimer's or other dementias.
Alzheimer's Care and Dementia Care Costs
The yearly cost of caring for someone with Alzheimer's depends on the stage of the disease.$18,400 for someone with mild symptoms, $30,100 for moderate symptoms, and $36,132 for severe symptoms.
In the US 7 out of 10 people with Alzheimer's live at home where 75% of costs are absorbed by the family. The remaining 25% of care costs cost an average $19,000 a year.
The average cost of putting an Alzheimer's patient in a nursing home in the US is $42,000 a year. However in some areas those costs can be at least $70,000
Medicare costs for beneficiaries with Alzheimer’s disease were $91 billion in 2005. Medicare costs are expected to increase by 75% to $160 billion in 2010.
Medicaid expenditures on residential dementia care were $21 billion in 2005. These cost are estimated to rise by 14% to $24 billion in 2010.
An estimated 5.2 million Americans have Alzheimer's disease in 2014, including approximately 200,000 individuals younger than age 65 who have younger-onset Alzheimer's.
Almost two-thirds of American seniors living with Alzheimer's are women. Of the 5 million people age 65 and older with Alzheimer's in the United States, 3.2 million are women and 1.8 million are men.
The number of Americans with Alzheimer's disease and other dementias will escalate rapidly in coming years as the baby boom generation ages. By 2050, the number of people age 65 and older with Alzheimer's disease may nearly triple, from 5 million to as many as 16 million, barring the development of medical breakthroughs to prevent, slow or stop the disease.