The remaining life span of an Alzheimer's victim is generally reduced, although a patient may live anywhere from three to twenty years after diagnosis. The final phase of the disease may last from a few months to several years, during which time the patient becomes increasingly immobile and dysfunctional. Caregivers should understand the phases of this illness in order to help determine their own capacities for dealing with this painfully sad disease.
Home Treatment in Early Stages Telling the Patient. Often physicians will not tell patients that they have Alzheimer's. Studies indicate that progression may be slowed down with intellectual effort and most investigative drug trials are performed in early stages. If an Alzheimer's patient expresses a need to know the truth, it should be disclosed. Both the caregiver and the patient can then begin to address issues of this disabling disease that can be controlled, such as access to support groups and drug research.
Mood and Emotional Behavior. Alzheimer's patients display abrupt mood swings and many become aggressive and angry. Some of this erratic behavior is caused by chemical changes in the brain. But certainly, it can also be attributed to the terrible and real experience of losing the knowledge and understanding of one's surroundings, causing fear and frustration that they can no longer express verbally.
The following recommendations for caregivers may help reduce agitation:
Keep environmental distractions and noise at a minimum if possible. (Even normal noises, such as people talking outside a room, may seem threatening and trigger agitation or aggression.)
Speak clearly. Most experts recommend speaking slowly to an Alzheimer's patient, but some caregivers report that Alzheimer's patients respond better to clear, quickly spoken, short sentences that they can more easily remember.
Limit choices (such as clothing selection).
Offer a diversion, such as a snack or car ride, if the patient starts shouting or exhibiting other disruptive behavior.
Simply touching and talking may also help.
Maintain as natural an attitude as possible. Alzheimer's patients can be highly sensitive to the caregiver's underlying emotions and react negatively to patronization or signals of anger and frustration.
Showing movies or videos of family members and events from the patient's past may be comforting.
Although much attention is given to the negative emotions of Alzheimer's patients, some become extremely gentle, retaining an ability to laugh at themselves or appreciate simple visual jokes even after their verbal abilities have disappeared. Some appear not unhappy, but to be in a drug-like or "mystical" state focusing on the present experience as their past and future slip away. Encouraging and even enjoying such states may bring some comfort to a caregiver.
There is no single Alzheimer's personality, just as there is no single human personality. All patients must be treated as the individuals they continue to be, even after the social selves have vanished.
Appearance and Cleanliness. For the caregiver, grooming the Alzheimer's patient may be an alienating experience. For one thing, many patients resist bathing or taking a shower. Some spouses find that showering with their afflicted mate can solve the problem for a while. Often the Alzheimer's patient loses the sense of color and design and will put on odd or mismatched clothing. This may be very frustrating to a loved one, particularly since (certainly in the beginning) embarrassment is a common and painful emotion experienced by the caregiver. It is important to maintain a sense of humor and perspective and to learn which battles are worth fighting and which ones are best abandoned.
Driving. As soon as Alzheimer's is diagnosed, the patient should be prevented from driving. A Swedish study found that over half of elderly people involved in fatal accidents had some degree of neurologic damage.
Wandering. A potentially dangerous trait is the Alzheimer's patient's tendency to wander. At the point the patient develops this tendency, many caregivers feel it is time to seek out nursing homes or other protective institutions for their loved ones. For those who remain at home, the following precautions are recommended:
Locks should be installed outside the door, which the caregiver can open, but the patient cannot.
Alarms might be installed at exits.
A daily exercise program should be implemented, which may help tire the patient out; one study showed that walking 30 minutes, three times a day also improved communication.
The caregiver should contact organizations, such as Alzheimer's Association or Medic Alert, for identification supplies and procedures that help locate patients who wander away from home and become lost. [See Where Else Can Help Be Found for Alzheimer's Disease?, below.]
Sexuality. In many cases, the Alzheimer's patient becomes uninhibited sexually; at the same time, the patient's physical deterioration and receding capacity to recognize the spouse as a known and loved individual can make sexual activity despairing and repellent for the caregiving spouse. Other patients may lose interest in sex. If sexual issues are a problem, they should be discussed openly with the physician, and ways should be found to maintain non-sexual physical affection that can bring comfort to both the patient and the spouse.
Twelve Steps for Caregivers
Although I cannot control the disease process, I need to remember I can control many aspects of how it affects my relative.
I need to take care of myself so that I can continue doing the things that are most important.
I need to simplify my lifestyle so that my time and energy are available for things that are really important at this time.
I need to cultivate the gift of allowing others to help me, because caring for my relative is too big a job to be done by one person.
I need to take one day at a time rather than worry about what may or may not happen in the future.
I need to structure my day because a consistent schedule makes life easier for me and my relative.
I need to have a sense of humor because laughter helps to put things in a more positive perspective.
I need to remember that my relative is not being difficult on purpose; rather that his/her behavior and emotions are distorted by the illness.
I need to focus on and enjoy what my relative can still do rather than constantly lament over what is gone.
I need to increasingly depend upon other relationships for love and support.
I need to frequently remind myself that I am doing the best that I can at this very moment.
I need to draw upon the Higher Power, which I believe is available to me
Source: The American Journal of Alzheimer's Care and Related Disorders & Research, Nov/Dec 1989
Home Treatment During Later Stages
The Alzheimer's patient needs 24-hour a day attention. Even if the caregiver has the resources to keep the Alzheimer's patient at home during later stages of the disease, outside help is still essential.
Incontinence. An Alzheimer's patient's incontinence is generally devastating to the caregiver and a primary reason why many caregivers decide to seek nursing home placement when the patient reaches this stage. When the patient first shows signs of incontinence, the doctor should ascertain that it is not caused by an infection. Urinary incontinence may be controlled for some time by trying to monitor times of liquid intake, feeding, and urinating. Once a schedule has been established, the caregiver may be able to anticipate incontinent episodes and get the patient to the toilet before they occur.
Immobility and Pain. As the disease progresses, Alzheimer's victims become immobile, literally forgetting how to move. Eventually, they become almost entirely wheelchair-bound or bedridden. Bedsores can be a major problem. Sheets must be kept clean, dry, and free of food. The patient's skin should be washed frequently, gently blotted thoroughly dry, and moisturizers applied. The patient should be moved every two hours and the feet kept raised with pillows or pads. Exercises should be administered to the legs and arms to keep them flexible. One expert reported that 62% of patients with mild to moderate dementia report pain, usually in joints, yet very few patients in late-stage dementia receive pain medication, even though there is no evidence that they are not experiencing the same pain.
Eating Problems. Weight loss and the gradual inability to swallow are two major related problems in late-stage Alzheimer's and are associated with an increased risk of death. Weight gain, however, is linked to a lower risk of dying. The patient can be fed through a feeding syringe, or the caregiver can encourage chewing action by pushing gently on the bottom of the patient's chin and on the lips. The caregiver should offer the patient foods of different consistency and flavor in case the patient can handle one form better than another. Because choking is a danger, the caregiver should learn to administer the Heimlich maneuver, which may be taught by the local Red Cross. Dehydration can also become a problem; it is essential to encourage fluid intake equal to eight glasses of water daily. It should be noted that coffee and tea are diuretics and will deplete fluid.
Care for the Caregiver
Few diseases disrupt a patient and his or her family so completely or for so long a period of time as Alzheimer's. The patient's family endures two separate losses and grieves twice:
First, they must grieve for the on-going disappearance of the personality they recognize. Dealing with the Alzheimer's patient throughout the course of the disease is like Alice's fall down the rabbit hole into Wonderland. No sooner has the caregiver grappled with one set of problems, when the patient's further deterioration creates new and more intractable ones.
Finally, the caregiver must grieve the actual death of the person.
Often, caregivers themselves begin to show signs of mental disorder or ill health. The disease may even have negative effects on the immune systems of the patients' partners. Depression, empathy, exhaustion, guilt, and anger can play havoc with even a healthy individual faced with the care of a loved one suffering from Alzheimer's. And the care-giving spouse is usually elderly and often frail. Children are likely to be grown-up and may live far away.
Although 96% of caregivers interviewed in a survey stress the need for help, only 2% of Alzheimer's families receive outside support services. No one should endure such agony alone. It is important for the caregivers to receive counseling and support for themselves as well. In fact, according to one study, when caregivers took part in support programs, institutionalization of the patient was delayed by a year.
Nursing Homes and Other Outside Services
A point comes when the most devoted caregiver will probably need to institutionalize the Alzheimer's patient. That point is determined not only by the caregiver's emotional endurance, but also by his or her physical strength and stamina, as an Alzheimer's adult typically takes on the random, undisciplined behavior of a very young child. Financial considerations in finding a nursing home are often paramount, but the kind of care is equally important. Although fully half of all nursing home patients are victims of Alzheimer's, not all nursing homes have programs specifically designed for them. Some institutions may claim that they do, but often they simply group patients together without offering any special programs. If a caregiver manages to find a facility that offers good services, it may be located far from home, making visits difficult. The caregiver must then decide whether superior care at a distant institution is worth seeing the patient less frequently, still one more painful issue. A hospice program, if it is available, offers a more humane and compassionate option than the nursing home or hospital during the final months of a terminal illness. Medicare coverage now includes hospice care for Alzheimer's patients.