Information

Aides Aides are a necessity if a Lewy body patient is to be cared for outside of a nursing home. We have been successful in finding aides by word of mouth — from acquaintances who had a relative with dementia, from workers at daycare, from other aides. Aides can also be located via eldercare agencies, eldercare case management agencies, and government agencies. It's so important to find aides who are competent, reliable, and honest. See 8. Living Arrangements and Daycare and 9. We Need Aides.

Assisted living Assisted living facilities may be an option for a person with Lewy body disease for a while, but as the disease progresses, it becomes infeasible. Most facilities are profit-oriented, so they may not make this point clear. Some have an adjoining nursing home or Alzheimer's ward. It should be noted, however, that an Alzheimer's ward may not be appropriate for someone with Lewy body disease. Alzheimer's patients remain mobile for a long time, whereas people with Lewy body disease typically don't. Therefore, an Alzheimer's ward may not be prepared to give the Lewy body patient the necessary care. See 8. Living Arrangements.

Bedsores As a result of inactivity, bedsores can be a problem. The aides tend to them carefully and sometimes use a prescription item such as DuoDerm, a material impregnated with medicine. Finally, we got an air mattress for the bed. See 14. Slow Decline Continues, 18. Update, April 2003, and 19. Update, August 2003. With good care, the bedsores healed (20. Update, May 2004), but have to be monitored continually (21. Update, May 2005).

Constipation This has been a problem, presumably due to inactivity. At first, stool softeners, Metamucil, senna, and prune juice sufficed. Later, periodic enemas became necessary. See 14. Slow Decline Continues. The constipation problem was largely resolved after we discovered Fruit-Eze (20. Update, May 2004).

Daycare There are many programs nowadays for people with dementia. These programs provide activities for the attendees and give their caregivers at home a respite. It didn't work out for Mother, but it seems like a reasonable thing to look into. See 8. Living Arrangements and Daycare.

Deep vein thrombosis As a result of prolonged inactivity, Mother developed deep vein thrombosis (a blood clot) in her leg. This condition led to a swollen leg and a one-week stay in the hospital, during which a blood thinner was given intravenously. See 14. Slow Decline Continues.

Delusions In addition to hallucinations, Lewy body patients may have delusions. In Mother's case, hallucinations were mild, but her delusions were intense. See 7. Dr. Jekyll and Mrs. Hyde.

Dental hygiene The aides we had didn't always do a good job of cleaning Mother's teeth, which is admittedly a hard job. An electric toothbrush helped a lot, as did some pointers from a dental hygienist. See 13. Hygiene and Dental Care. Later, additional problems arose (19. Update, August 2003).

Eating and drinking problems An early problem was handling utensils, but Mother could still pick up some foods by hand. Later, as her arm motions became restricted, it was difficult for her to lift her hands to her mouth. As the disease progressed, her food needed to be cut into small pieces. See 14. Slow Decline Continues, 15. Living Will, and 17. Future Concerns. Later (21. Update, May 2005), Mother would sometimes gag when drinking. To alleviate this problem, her liquids had to be thickened with a cornstarch product, such as Thick-It or Thicken-Up.

Equipment We were fortunate to have a physical therapist who advised us about what equipment to get and what was covered by Medicare. Our equipment came from a medical supply company, and Medicare pays the company the monthly rental fees. After renting for a while, the company gave us the option to take possession of the equipment. (Essentially, the Medicare payments had fully reimbursed the company for the cost of the equipment, most of which was used to begin with.) We chose not to do so. By renting, the company is responsible for replacing or repairing anything should it break, something that has happened. We found that the brakes of the wheelchair need to be adjusted periodically and the hospital bed has had a problem on occasion. (Note that many local ambulance corps have wheelchairs, canes, and walkers that they will lend to people in the community for extended periods of time.)

• Air mattress Paid for by Medicare, the air mattress replaced Mother's traditional bed mattress, in an attempt to keep down the bedsores. The air mattress has an electric pump, which keeps it inflated to the right pressure. See 19. Update, August 2003. It definitely helped with the bedsores (20. Update, May 2004).
• Commode We purchased a commode, which was placed in Mother's bedroom area so that she wouldn't have to use the stairs to reach the bathroom. The commode is higher than an ordinary toilet and has side handrails making it easier to use. See 10. Things Get a Bit Worse.
• Hospital bed The hospital bed is adjustable in many ways. The most useful adjustment is to the bed's height, which allows the aide to tend to Mother without bending over. The bed we have is electrically powered, but the medical supply company says that it made a mistake in giving us this bed. They say that Medicare is only supposed to cover manually adjustable beds. See 10. Things Get a Bit Worse.
• Lift The aide uses the lift to transport Mother between the wheelchair and the bed. The lift we have is manual, which means that the aide must crank it by hand. There are others that are electrically powered. See 14. Slow Decline Continues.
• Shower bench We had this item before Mother became sick. We're not certain, but we believe that Medicare won't cover it. In any case, it was very useful in the early stages of Mother's illness. The shower bench allows a person to shower sitting down and makes it easier for the person to get in and out of the bathtub. The bench straddles the side of the tub. The person sits on the outer edge of the bench and lifts each leg into the tub. To facilitate bathing, it's a good idea to have a handheld shower head. See 8. Living Arrangements and Daycare.
• Suction machine When phlegm first became a problem (20. Update, May 2004), the aides gave Mother cough syrup to break it up, and they were able to pull some of it out. Later on, we needed to rent a suction machine to remove the phlegm from Mother's mouth and throat (21. Update, May 2005).
• Wheelchair Our wheelchair, paid for by Medicare, is anything but the latest and greatest model. The chair was ordered by phone from a medical supply company. It may be advantageous to order from a local store where you can view the chair before taking it. At times, we have borrowed a more light-weight wheelchair from the ambulance corps, which was much easier to lift and fold so that it could be put in the trunk of a car. The seat pad is an important consideration, because sitting for long periods can lead to bedsores. A gel seat pad is considered good. See 10. Things Get a Bit Worse.

  We have learned that Medicare allows for one wheelchair every five years. That should be taken into account when choosing a chair, although it can be hard to think ahead. Just try to remember that, as the disease progresses, your needs a few years from now may be different.

• Wheelchair ramp We hired a carpenter to build a wooden ramp leading to the front door of the house. We have heard of people having a ramp built at low cost (usually if their income falls below a certain limit) by a social services or government agency. In some vicinities the county has a work program through which prisoners build wheelchair ramps. See 11. The Wheelchair Ramp.

Feeding tube Two doctors (both internists) have mentioned that Mother might need a feeding tube (see 15. Living Will and 19. Update, August 2003). Mother's living will explicitly cites the feeding tube as an example of care she doesn't want. Several studies have shown that feeding tubes neither extend the life of people with dementia nor make them more comfortable, which is why the Alzheimer's Association recommends not using feeding tubes (694K PDF document). (See also this informative article.)

Incontinence Early in the disease, Mother began to go to the bathroom very frequently, possibly as a precaution to avoid an accident. Later, she lost control of her bladder, then of her stool. See 14. Slow Decline Continues.

Living will A legal document that spells out your wishes regarding your medical care should you not be able to express them yourself. The living will also lets you designate a healthcare representative, who will make decisions in your stead. See 15. Living Will, 19. Update, August 2003, and 21. Update, May 2005.

Medication See What LBD Is. There is no cure for Lewy body disease. Right now, doctors prescribe drugs to treat four major features found in Lewy body disease. Many of the medications are the same that Alzheimer's and Parkinson's patients take:

• Cognitive problems. Usually, a drug like Aricept is prescribed. This is the same drug that is commonly prescribed for Alzheimer's disease. It is supposed to slow the dementia, but it does not stop the decline or restore memory. In Mother's case, Aricept seems to have caused agitation and increased memory loss (see 5. Aricept and Mother's Quick Decline). Mother takes a 5-mg dose and we declined to increase the dosage to 10 mg because of our concern about the side effects (see 10. Things Get a Bit Worse).
• Motor problems. Levodopa/carbidopa (Sinemet) is frequently prescribed to deal with the motor problems. This is a drug commonly given to Parkinson's patients, though it can worsen hallucinations. Mother's limbs had become very stiff making it difficult to dress her and for her to walk up and down stairs. L-dopa alleviated these symptoms. She started on a small dose, but gradually her stiffness returned and the dosage was increased (see 10. Things Get a Bit Worse). Eventually, the medication ceased to have any noticeable effect, until it was combined with a medication called Requip (see 18. Update, April 2003). Earlier in the illness, Requip caused too much somnolence, but later on it functioned well for a while. The effect of the Requip was short-lived (see 19. Update, August 2003).
• Hallucinations. An antipsychotic medication, such as Zyprexa, might be prescribed (see 7. Dr. Jekyll and Mrs. Hyde). This kind of medication can worsen motor problems, though. Also note that the FDA issued a warning about the use of antipsychotics in people with dementia.
• Depression. In cases of depression, an antidepressant, such as Zoloft or Prozac, might be prescribed. Mother didn't seem to suffer from depression.

Here are some other medications Mother has taken:

• Prempro. This is part of hormone replacement therapy frequently prescribed to women after menopause. Mother began to take Prempro on the advice of her gynecologist before she exhibited any signs of dementia. Some doctors (including the one we saw at Columbia Presbyterian Hospital) thought it might improve memory and be beneficial for Alzheimer's patients. Recently, prescribing Prempro has become controversial because it may cause an increase in cancer and new research suggests that Prempro might heighten the risk of dementia.
• Blood thinners. Aspirin. At one point, one of Mother's doctors recommended that she take a daily dose of St. Joseph's aspirin. However, Mother complained that it disagreed with her and stopped taking it. (Though not a blood thinner, we had asked the neurologist at Columbia Presbyterian if ibuprofen would be beneficial. He couldn't recommend it because he thought it might lead to stomach problems.) Coumadin. This is a blood thinner often given to people who have had strokes or blood clots. Mother was briefly on this medication after her hospitalization for a blood clot she developed in her leg (deep vein thrombosis) as a result of lack of exercise and movement of her legs. See 14. Slow Decline Continues. Plavix. A blood thinner lower in strength than Coumadin. Mother took this after having a TIA (see 2. First Hints of Trouble).
• Gingko Biloba. This is an herbal supplement that some claim increases memory and brain function. Mother complained that she didn't feel well when she took it, so she stopped.
• Vitamin E. Mother took this vitamin supplement for many years prior to developing dementia and continued with it afterwards. It is considered to be beneficial for Alzheimer's disease.
• Albuterol. To help relieve the phlegm problem Mother developed (21. Update, May 2005), a doctor prescribed albuterol, a medicine that is often used to treat the wheezing and breathing problems in diseases such as asthma and bronchitis. The albuterol was given through a nebulizer, a small machine that vaporizes the drug and delivers it through a face mask.

Mini Mental Status Exam This is a short assessment of cognitive ability (memory, thinking, language, etc.) often given by a neurologist. The exam asks the patient to answer a series of questions (e.g., "Where are we?" "Who is the president?") and perform a set of tasks (e.g., "Count backward from 100 by sevens," "Remember these three words"). See 2. First Hints of Trouble and 4. Back to the Neurologist.

MRI brain scan Magnetic resonance imaging of the brain is usually done as part of a full neurological work-up. See 2. First Hints of Trouble and 6. Columbia Presbyterian Hospital.

Neuropsychological testing Like the Mini Mental Status Exam, this is an assessment of cognitive ability, but it is much more thorough. It is given by a neuropsychologist (a psychologist with special training in testing neurological patients) and can take several hours. See 6. Columbia Presbyterian Hospital.

Phlegm Phlegm started to be a problem, as Mother became too weak to cough it up. Cough medicine helped to break it up, and the aides physically extracted some also. See 20. Update, May 2004. Later on, we needed to rent a suction machine to remove the phlegm from Mother's mouth and throat (21. Update, May 2005).

Physical therapy Physical therapy seems to be a good choice for people in the early stages of Lewy body disease. The therapist we had was extremely helpful in getting us set up with the proper equipment for the home. Later on, the therapist said she couldn't help Mother with her motor problems. See 10. Things Get a Bit Worse.

Power of attorney A legal document that allows us to manage Mother's financial affairs without getting the authorization of a court. Mother had the foresight to complete this document well before she became ill. See 15. Living Will.

SPECT brain scan A single-photon emission computerized tomography scan of the brain looks at the blood flow in the brain. See 6. Columbia Presbyterian Hospital.

Sundown effect This is a tendency for symptoms to worsen in the late afternoon and evening. See 7. Dr. Jekyll and Mrs. Hyde.

Symptoms of Lewy body disease See What LBD Is.

TIA A transient ischemic attack is a temporary problem that indicates a neurological problem; essentially, it's a "mini-stroke." It can manifest itself in a variety of ways (e.g., double or blurred vision, dizziness, loss of consciousness, weakness in a limb, slurred speech). In Mother's case, she temporarily lost the ability to read. See 2. First Hints of Trouble.

Ultra-sound of the arteries An ultra-sound of the arteries in the neck can help doctors determine whether there is a problem with blood flow to the brain. See 2. First Hints of Trouble.

Visual problem Mother developed a visual problem that affected her ability to see things to her left. We don't know how common this is. See 10. Things Get a Bit Worse.