The Alzheimer’s Association provides support and assistance to families and victims of Alzheimer’s Disease. The Alzheimer’s Association has chapters worldwide. They have support groups where families can gather to express their concerns or just to get away for awhile. The Alzheimer’s Association has been instrumental in lifting the stigma placed on people with Alzheimer’s Disease. This association focuses on Alzheimer’s Disease as a disease, not something which can be controlled. The Alzheimer’s Association has developed the “Alzheimer’s Project”, where for a small fee, family members can get away for a day or a week-end. Trained persons will care for their loved ones to offer the primary caregivers a much needed respite (Alzheimer’s Association. 1997).
The Alzheimer’s Association is instrumental in researching both preventions and cures for Alzheimer’s Disease and related dementias. The association is also an educator and provides much needed updates to people who care for victims of Alzheimer’s Disease and related dementias. (Alzheimer’s Association. 1997). Services Offered Although rural areas are more limited than urban areas for services offered, there are services available. In rural areas, neighbors and friends often help the primary caregiver by offering their services so the caregiver can have sometime away from the often stressful situation. (Hagan, April 1998).
The Right to Know More and more people are being informed of their diagnosis of dementia or Alzheimer’s Disease. Sometimes, however, the afflicted person is in denial and refuses to believe that there is a problem. Some people feel depressed just knowing that there is something wrong and are better off now knowing (Alzheimer Test Dilemma, 1995). Whether to tell or not to tell a person he or she has Alzheimer’s Disease is an individual decision. It should be made collectively by the doctor and the whole family. Some people afflicted with Alzheimer’s Disease tell their doctor that they do not want their family to know. In time, however, the family knows that their is a problem (Alzheimer-Europe, Undated).
When a person has Alzheimer’s Disease and has an understanding of the disease and what the diagnosis will encompass, the knowledge empowers them to make decisions, and take an active role in their plan of care. They can make decisions about finances and even perhaps participate in research which may benefit others. The afflicted person can even make decisions about placement in a facility when the disease progresses (Alzheimer-Europe, Undated).
Letting the person with Alzheimer’s Disease make decisions and allowing him or her choices is important. During the early stages of Alzheimer’s Disease, the person can choose living arrangements and many more things. As the disease progresses, his or her ability to make decisions will diminish but the need to feel in control will stay intact. Making small decisions such as, deciding to drink coffee instead or tea is very important to the person. Feeling that the person has a choice will make the person feel like a person (Hagan, April, 1998).
Facility Placement Overall, nursing homes in the United States are viewed very negatively. Social isolation is one of the biggest complaints regarding nursing home placement. Placing a loved one in a facility is a difficult decision for a family member. Like any other decision, there are pros and cons to facility placement. As the disease progresses, the stress on the caregiver becomes enormous and if there is only one primary caregiver, the caregiver’s health and well-being can become an issue as well (Sirois, April, 1998).
There are advantages to placement of the person with Alzheimer’s Disease or a related dementia. There are now special care units, specifically designed for the person with Alzheimer’s Disease. These units are designed for the wandering resident, they are structured using the social model, and activities take place throughout the day. Medical needs are met at all times, but these special care units are designed to meet the needs of the Alzheimer/dementia resident. They appear more homelike, with circular walking paths and several common areas, as opposed to the traditional nursing facility which has long hallways, not very conducive to the wandering resident. Socialization is prevalent in these units which is very important to the Alzheimer/dementia population (Hamdy et al., 1998).
Another advantage to special care units are they are frequently secured units. Most residents brought to these units have issues of safety. They wander and make poor decisions because of cognitive problems (Hamdy et al., 1998). Disadvantages to the special care units are they tend to keep the same staff and close relationships develop with the residents and with family members as well. While this can be an advantage, becoming too close to residents and their families can cause problems regarding objectivity (Hamdy et al., 1998). Advantages of placement are the caregiver is able to rest when needed, is able to visit their loved one, the caregiver is able to get on with his or her life knowing that the loved one is being care for and is safe.
Disadvantages of placement are often feelings of anger, loss of control, and guilt. Caregivers may feel angry because they feel they failed in caring for their loved one. They may feel guilty that they placed someone they love in a facility, and after being in control of the situation for so long, they may feel a “letdown” (Sirois, April, 1998). One family member who placed his mother in a special care unit for Alzheimer’s Disease said he knew it was just a matter of time before he needed to place his mother. He cared for his mother at home for seven years. The stove needed to be turned off because of safety issues and she needed supervision twenty-four hours a day. He knew then that this was the time for placement. This former caregiver said he knows he made the right decision. His mother adjusted very well and has established a routine of her own. She appears content and her favorite activity is visiting with her son, whom she still recognizes. (Prentiss, 1998).
Choices Letting the person with Alzheimer’s Disease make decisions and allowing him or her choices is important. During the early stages of Alzheimer’s Disease, the person can choose living arrangements and many more things. As the disease progresses, his or her ability to make decisions will diminish. The need to feel in control will stay intact. Making small decisions such as, deciding to drink coffee instead of tea, is very important to the person. A person will always feel more like a person when he or she is allowed to have choices. (Hagan, April, 1998).