Secrets to Caring For a Loved One With Dementia
(From Bottom Line/Health, date unknown)

What one woman learned as she helped her husband cope with this devastating disease.

Bottom Line/Health interviewed Joanne Koenig Coste, president of Alzheimer Consulting Associates, a Framingham, Massachusetts-based company that designs specialized advanced dementia programs for hospitals, nursing homes, assisted-living and other community-based facilities. The former president of Massachusetts Alzheimer's Association, Koenig Coste is the author of two training manuals for caregivers and a book, Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease (Houghton Mifflin).

In 1972, Charles Koenig, a 44-year-old advertising executive, showed the signed of early-onset dementia. Until he died four years later, Koenig was cared for at home by his wife, Joanne Koenig Coste. Since then, Koenig Coste, who has a master's degree in counseling and psychology, has devoted herself to better understanding the behavior of Alzheimer's and other dementia patients and improving their care.

Dementia is not an inevitable part of aging. More than half of people over age 100 do not have it. Unlike the occasional memory lapses that are a normal part of aging, dementia affects not only memory, but also thinking, judgment and the ability to learn. With dementia, mental functioning typically deteriorates over a period of two to 10 years.

Koenig Coste's principles help make life easier for caregivers, as well as people who suffer from any advanced form of dementia.

Her advice for five challenges....

Bathing. A refusal to bathe sets in early during some types of dementia because dementia sufferers feel a loss of control and no longer have the ability to "recognize" water. To overcome that fear....

• Choose a time at which your loved one is accustomed to bathing – not when it is most convenient for you.
  


• Remove or cover up highly reflective surfaces, such as mirrors, which can lead a perceptually impaired person to think that another person is in the room.
  


• Dye bathwater blue. This can help alleviate panic caused by a lack of depth perception resulting from the destruction of brain cells responsible for interpreting sensory material.
  
  Do not use food coloring, which will stain your tub – and the person bathing. Bathwater salts that add scent and color to the water work well. These products can be purchased in drugstores.
  


• Always approach your loved one from the front to avoid starting him/her. Wash from the feet up, using a handheld shower head. Sponge baths also are a good idea for dementia sufferers who are afraid of bathwater. Showers tend to be more frightening.
  


• Install adhesive "no-slip" strips on the bottom of the bathtub and grab bars to help prevent falls.
  


• If bathing is a perpetual battleground, reevaluate your own notions of cleanliness. What is best for your loved one?
  

Toilet Accidents. People with dementia often lose bladder and bowel control. To help overcome related problems....

• Hang a picture of a toilet (found in a newspaper ad or a plumbing-supply catalog) on the bathroom door to remind the patient where the door leads.
  


• Paint the wall behind the toilet a bright, contrasting color, such as red or blue, to help the patient find and see the toilet. Many people with dementia also have glaucoma or other vision problems.
  


• Make sure that the patient's clothes are easy to put on and take off. Whenever possible, choose Velcro or elastic instead of buttons or zippers.
  


• Catalogs that carry this type of clothing include Buck & Buck, 800-458-0600, www.buckandbuck.comÉ.and Silvert's, 800-387-7088, www.silverts.com.
  


• To reduce nighttime accidents, keep a light on in the bathroom and place a path of glow-in-the-dark tape from the patient's bed straight to the toilet.
  

"Sundowning." Many people with dementia become agitated in the late afternoon. The diminishing light decreases their ability to see, and they wonder what they're supposed to be doing. Their powerful long-term memories tell that that they should be heading home from work, getting ready for the kids to come home from school or cooking supper. But difficulty with short-term memory leaves them confused.

To counteract the effects of sundowning....

• Install a dimmer and replace regular bulbs with full-spectrum bulbs such as Vita-Lite that imitate the spectrum of natural sunlight (available at hardware stores). Turn the lights up high when the sun starts to set.
  


• Listen to music or play a game. Choose your loved one's favorite music. Restful, classical or new age music works better than more stimulating music such as Big Band tunes.
  
  Some people with dementia enjoy sorting playing cards by suit, but you can customize the activity to their interests and abilities.
  
  Low-key activity helps preserve a patient's dignity and has a calming effect. Feather dusters can keep a person busy, because there's a house full of furniture to dust.
  
  My late husband to garden. Although he lost the ability to choose and plant flowers, he still could dig for quite some time. He dug hole after hole and destroyed the yard, but I decided that it was more important for him to feel as if he had "gardened" than to have an attractive yard.
  

Repeated questions. The relentless questions asked by people with dementia often reflect their fears and vulnerabilities. "What time is it?" really means "What am I supposed to be doing now?" It helps if you have an answer: "It's time to have a cup of coffee!"

Mishaps during outings. Don't tell the patient about outings in advance, and always have a contingency plan. You may not be able to take the person, or you may have to interrupt the trip to take your loved one home. Don't buy nonrefundable tickets if you can help it.

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