The Tragedy of Alzheimer’s Disease
It is thought that 4.5 million Americans suffer from Alzheimer’s Disease at the present time. The numbers are expected to increase to 14 million by the year 2050. After the age of 65 the likelihood of developing this disease significantly increases every five years. By the time people reach their mid 80's the increases seem to level off, all of this according to the National Institute on Aging (NIA). With the diagnosis of Alzheimer's disease a long process of decline occurs, usually slowly, that has a terrible impact on the patients with the disease and their families. Slowly but surely a person with Alzheimer's disease loses their memory and ultimately, their entire identity and the ability to care for themselves. It is said that these losses occur backwards from the way they were acquired form birth until adulthood, with memory being destroyed first and the ability to dress or know who you are lastly. What is this disease and how does it impact on everyone?
Alzheimer's disease is one form of dementia but not its only form. Dementia refers to the loss of the ability of a person to think and reason due to some type of brain disease. Alzheimer’s is one brain disease causing dementia but there are others. For example, there is something called a Multi Infarct Dementia. In this type of brain disease mini strokes occur that gradually destroy brain cells. A person is not aware of having these types of strokes because they are minor and occur without perception. Yet, each time it occurs the individual loses more of their mental capacities.
Alzheimer’s disease gradually deteriorates the brain and has the same effect as multi infarct dementia in that the ability to think and reason is lost. While both types of dementias usually occur after the age of 65, it can occur at any age with the result that there are unfortunate individuals who suffer this fate as early as age 50 and even much younger, but those are more rare cases.
During the early stages of Alzheimer’s the patient is usually aware that something is wrong. Their recent and short term memory is deeply affected so that they constantly misplace and cannot find items such as their household keys, wallet, pocket book, cell phone and other types of commonly used items. They also experience difficulty finding ordinary words when they are talking with friends and neighbors.
As the individual becomes aware that they are not functioning as well as they did formerly they become depressed. This depression probably results from an awareness that something is being lost that will never be regained.
It is at this point that a combination of the elderly individual and their family members consult a physician about what is going on. Patients may be brought to a psychiatrist for depression or to their family physician because there are concerns about deterioration in functional abilities on a daily basis.
Diagnosis of Alzheimer’s disease is not easy because it cannot be done without studying samples of brain tissue. Obviously, this cannot be done while the individual is alive. Therefore, a combination of neurological and psychological tests is given for symptoms of dementia. The psychological tests include a combination of memory, perceptual and mathematical tests to determine the patient's short term and long term memory. In the early stages of Alzheimer’s disease, long term memory is intact while recent information, such as day, time and season may be forgotten or confused.
Patients undergoing these types of tests are often anxious because they are well aware that Alzheimer’s is under consideration. The examining physician must keep this in mind while doing the assessment as anxiety and depression are each capable of interfering with memory and thinking. Therefore, if all other factors are ruled out and the patient does poorly during the evaluation the Alzheimer’s diagnosis can be made.
Sometimes the question is asked as to why tell the patient they have Alzheimer’s disease if there is not cure? There are several compelling reasons for informing both the patient and family members:
- Today, there are new medications that can slow the dementing process allowing the patient and family more quality time.
- Although this diagnosis is unpleasant patients have a right to plan for their future. Such plans include where they want to live during the later stages of the illness, who in the family gets power of attorney to make financial and other decisions, and how they want their medical care to be decided for especially with such issues as whether or not they would want extraordinary measures to be taken to prolong their life at the end.
- Patients also have a right to decide where they want to live while they are still in the early stages of the illness. Most elderly people feel comfortable living in their own home and prefer to not make themselves a burden on their children and grandchildren. During the middle stages of the sickness, there is often home help available for dementing patients including attendance in day programs for those with Alzheimer’s.
This disease has a powerful effect on family members whether they are the healthy elderly spouse or the children of the patient. Either way, the dementing process puts a burden on the caretakers in the family that will open up the most terrible and wrenching emotional experiences that it is possible to imagine. Why and how is this?
It is surreal for loved ones to watch their wife or husband of sixty years or their mother or father disappear in front of their eyes even though this person continues to live and breath. The way in which family members react to caring for the patient depends a lot on what kind of history both patient and family member had together whether it's a spouse, son or daughter.
A hypothetical example:
Example: A daughter (Irene) is caring for her mother who is 60 years old and was diagnosed with Alzheimer’s two years ago. The mother (Martha) lives alone in her apartment in Brooklyn New York. The patient is a widow and has been for five years now. The daughter, who is married and has teenage children who are in High School in Westchester, is torn between her responsibilities to her husband and children and to her mother. The trouble is that she and her mother have never gotten along with one another.
Irene experiences her mother's behavior as maddening and stubborn, just as she always has. From as far back as she can remember, her mother was controlling, stubborn and unreasoning. Because her mother cannot remember where she places her house keys, Irene bought her a small wooden box with a door and hooks and mounted it on the wall next to the exit to the apartment. She showed her mother how to store the key and made her promise to use it. Despite repeated reminders her mother "refuses" to use the new key box when she comes home and loses her keys. In fact any arrangements she has made to make her mother's life easier ends up being undone. Irene feels nothing but exasperation and rage at her mother. They get into yelling matches which is no problem for her mother who was always argumentative and seems to be more so these days. Why does Irene get so exasperated? Every time that Martha loses something she calls Irene, desperate, confused and angry that she cannot find what she is looking for. At the very same time, Martha feels treated like an infant by her daughter just because she asks her for a little help.
Irene knows that her mother has dementia. But racing down to the Bronx to help her mother cope with her life is just too much when she has so much of her own life to take care of. when she suggests to her mother that they move her into her (Irene's) house in Westchester and that the kids and her husband would love to have her, she flatly refuses and that also exasperates Irene.
This example is merely a mild case of what happens between patient and family. I could also point out that Irene has three brothers none of whom will help in any way. However, all three brothers are very concerned that Mom's money not be spent "frivolously" on social home services. They want to be sure that get their full inheritance and that neither Mom nor Irene do nothing dumb to threaten the estate they expect to inherit, especially since, in their view, that estates comes from their late Dad.
The situation with Martha will worsen as the dementia deepens. She will begin to forget where she lives and get lost even when she walks around the corner from her home. She will find it increasingly difficult to remember her address as well as Irene's telephone number. In fact, she has already had a couple of potentially disastrous consequences when she boiled water for tea and forgot to turn the burner off. She even cooked something in the microwave and forgot that tin foil coverings should not enter the microwave as anything metal can cause a fire.
Ultimately, Irene will be faced with two alternatives for her mother: 1. place her in a nursing home for her own safety or 2. get 24 hour home care for her mother, either in the apartment in the Bronx or in her own home in Westchester. In the end, if her mother begins wandering out of her apartment during the day and night and gets lost there will be no other choice but to have her placed in a nursing home. This idea fills her with guilt and with dread for having to deal with her unsympathetic brothers.
Progress is being made in discovering the causes and treatment of Alzheimer's disease and, perhaps either a cure or effective treatment to stop further deterioration will be available. As stated above, there are now medications that can slow the dementing process and give people more quality time. Anti depressant medications are also used to slow or stop the depression experienced by these people in the early and middle stages of the disease. Later on anti depressants will make no difference. So, what else is available?
- Music therapy: In the context of the nursing home music therapy has been found to be an effective treatment for dementing patients. Music therapy is calming and soothing. In addition, effective music therapists select music selections that appeal to the ethnic background and history of the particular patient. It has been reported that even at the late stages of the disease, music reawakens lost memories of days gone by and even the most demented patient is able to indicate significant responses because something in the music has stirred the brain cells.
- Art Therapy: Art therapy can be calming and soothing for patients still able to hold paper and pencils. For those who cannot, looking at works of art of all types and kinds can stir memories, feelings and evoke positive reactions, besides being very soothing.
- Pet Assisted Therapy: There is a wealth of anecdotal evidence as well as accumulating research evidence that the presence of pets in both the homes of patients as well as in their nursing homes has great beneficial effects. One study showed that the presence of an aquarium in the nursing home dining room resulted in patients eating more food than before. In addition, having people bringing therapy or comfort dogs to visit patients in nursing homes increases their socialization and responsiveness as compared to not having such visits.
In the end, there is no cure for Alzheimer’s disease, at least no yet and not for a long time. Among those who need a lot of emotional support and psychotherapy are the care takers of these patients, whether they are caretaking family members or at home professional and semi professional staff who visit the homes of such patients. Alzheimer’s patients, in their agitation and anger, can become quite verbally and even physically abusive, especially at the later stages of the illness.
The type of person these patients were during the course of their lives does not seem to matter. The intellectually gifted, kindest and gentlest people undergo profound and tragic changes as the disease causes them to spiral down into oblivion.
It can take up to twenty years for a person to die as a result of this dementia. There are many who pass away a lot sooner than that.
For more information and support if you have a loved one suffering from this terrible disease please to:
As always, questions and comments are welcome.