Elements of Caring

The expense of caring for your loved one with Alzheimer's can be extremely costly. And the financial drain can be made worse by lack of knowledge about the disease. Planning and foresight can make a critical difference in treatment option chosen as well as the toll that care can take on a family's resources.

The real costs of Alzheimer's aren't in the diagnosis or treatment, but in the care of patients. Bear in mind that many Alzheimer's patients live from six to twenty years after they are diagnosed.

At each stage of the disease, patients display particular behaviors and dysfunctions, requiring different types of treatment and care. By the time they have reached the middle to late stages of the disease, patients require unusually large amounts of care, from either family caregivers or nursing professionals.

For example, in nursing homes, professional staff have noted that they spend a disproportionate amount of their time with Alzheimer's patients, particularly those that still walk around unaided, simply because these people get themselves into hazardous situations most often. They also can forget to eat (or forget how to eat), so they often need to be prompted, reminded, or hand-fed. Most patients lose weight over time for a variety of medical reasons.

In recent years, a number of in- and out-patient special care units have been created specifically for patients with dementia (an umbrella term for Alzheimer's and several other closely related brain-destroying conditions). Some of the design and cost considerations that go into such a unit include:

• making sure doors and outside gates cannot be easily opened, so patients cannot wander off, maintaining a ratio of patients to staff that allows staff to monitor the movements of patients almost continually, to minimize injuries and serious accidents,
• placing visual cues (colors, identification tags) to help patients remember their way and maintaining a separate medication cabinet (rather than the usual cart propelled through the hallways) for the safety of the patients,
• addressing the memory and communications needs of patients with sensory stimuli ("memory boards" where they clip photographs and other reminders; pets and children they can touch; baking and cooking activities),
• planning additional meals and beverage breaks to keep patients' weight at normal levels and prevent dehydration,
• monitoring the feeding of patients, depending upon the stage of dementia (the potential danger of choking is quite high with Alzheimer's patients),
• providing a steady stream of structured, daily activities and group functions led by trained staff, which keep patients busy and stimulated, and
• creating programs that get other family members involved in visiting the unit and participating in group activities.

While these considerations are particularly appropriate to in-patient homes for dementia patients, they certainly apply as well to the design and layout of Alzheimer's day-care facilities - or even to modifications that must be made to the patient's house if the patient is to remain at home.

"Alzheimering" your home means protecting hot surfaces like light bulbs and radiators, taking away small objects that can go into the mouth, removing sharp objects and surfaces from the patient's reach, putting medications and toxic substances in a safe place, adapting the bathtub and toilet with grab bars to protect against slipping, covering slippery floors and securing rugs firmly to the floor, locking doors to the basement and attic stairs, keeping all house and car keys well hidden, and maintaining adequate stove safety and flame control. When keeping an Alzheimer's patient in the home, caregivers must resolve all problems connected with access, electric cords and outlets, locks (particularly to prevent wandering), the yard (especially if there's a swimming pool), and the car.

A sampling of home care equipment that will help make your home safe for the later-stage Alzheimer's patient would include plastic faucet handles that are easier for movement-impaired persons to use . . . security lights in the event of a power outage . . . time switchers that turn household appliances on and off as you program them . . . one-way inter-com to let you keep an ear on the patient in another room . . . "potty chairs," bedpans, and bed supports . . . talking clocks (for patients obsessed with knowing the time) . . . suction plates and cups . . . and wheelchairs, hydraulic lifts, and stairway elevators as needed when the patient is no longer ambulatory.

The following checklist presents some basic objects caregivers can get to help the patient find his way around:

1. A medication dispenser, so you know, as well as the patient when pills should be taken.

2. A magnifying glass, so that small print on bottles and elsewhere can be easily read. It may even be useful for reading, watching television, or telling the time. (For patients who need to know the time, a watch with large hands and numbers can also be useful.)

3. Marking tape, in particular colors, which you can use to mark pathways to the bathroom, kitchen, or the patient's bedroom. This will ease the strain on the patient's memory. (You will have to be very careful with this, however, because many persons with Alzheimer's cannot discriminate between a strip of tape on the floor and a step - so they may become hesitant about moving forward. This technique is usually more successful in the early stages of the disease.)

4. An identification bracelet, in case the patient should wander from home or somehow find himself alone in a strange place. You may also want to include medical information on the bracelet - this way, a rescuer will know that the patient's confusion results from Alzheimer's.

5. Warning labels to let the patient know that opening certain drawers and touching certain surfaces are dangerous. It is best if these are in symbol form, rather than in words the patient may no longer understand. For example, you may wish to adopt the international sign for "no," a red circle with a diagonal line drawn through it.

Of course, you will also want to offer the patient distractions that are stimulating, simple, and pleasurable. Here are some possibilities to consider:

1. Play tapes of soothing music (particularly music that is familiar to them). This should have a calming or mildly stimulating effect on the patient.

2. Give him seeds to plant and watch grow. This allows the patient to feel a sense of purpose, an ongoing responsibility that only he can take care of. One suggestion for the type of plant is a sunflower: it's easy to care for, and once the seeds have grown, you put the plant in the back yard, so the patient can watch birds feed off the plant.

3. If the patient likes animals, having a house pet around can be a good source of distraction as well. We don't suggest bringing a new pet into the house, unless you are sure it is domesticated and relatively harmless. (If you have a cat, you should consider having its claws removed.) You will need to stay alert to the fact that the patient's attitude toward the pet may suddenly change.

4. Surround the patient with familiar objects such as a favorite blanket, a shawl, or a doll. These can serve as conversation pieces; more importantly, they will reassure the patient that he is in familiar, safe surroundings.

5. Show favorite old movies - including silent pictures. These can be enjoyable for certain patients, just as the older music can help bring back recollections.

6. Encourage family members to join together in activities with the patient. Group or family activities help alleviate the loneliness the Alzheimer's patient often feels.

7. Schedule regular visits from friends or relatives. Having visitors stimulates the patient, but visits should be kept relatively brief, so the patient does not become unduly tired or frustrated.

8. In the earlier stages of the disease, patients may find help and comfort from a support group made up of others suffering from Alzheimer's. (Caregivers will definitely benefit from support groups of their peers.) Contact your state Agency on Aging for more information about support groups in your area.

9. Finally, certain "low-risk" activities, such as taking the patient for a ride in the country, can provide fruitful diversion for both the patient and the caregivers.

Even when you can't spend time with the patient, you will need to see that he is always comfortable. You may wish to order a bed or chair from a hospital supply company, adapted to the needs of patients who are immobile for long periods. Be careful to dress the patient in warm, somewhat loose clothing that is easy to wear and wash. Special items of clothing made with velcro snaps instead of buttons or zippers are particularly helpful to patients who lose manual dexterity.

Finally, but no less important, please bear in mind that you want to do whatever is in your power to let the patient hold onto his dignity and self-esteem. This includes asking him to share in chores and duties, deferring to his decisions (where appropriate), listening carefully to what he has to say, and encouraging him to share his feelings and concerns.

Remember that, although Alzheimer's disease kills the person's mind, it does not kill the person inside. You must respect that person whenever possible - even though it may be harder to gain access to the unique personality beneath the ravages of the disease. You'll be glad you made the effort.