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The following information is provided as a tool to help the Caregiver find the solution that works for situation they are faced with.
Just when you thought it couldn’t get any worse, your loved one with Alzheimer’s develops incontinence. What do you do now? Incontinence can be upsetting to the person and difficult for the caregiver. Incontinence in children is called "training". In adults, it's often called embarrassing.
Incontinence can be humiliating for a person with dementia and upsetting for those around them. However, although it can be a distressing problem, it is a surprisingly common one, and the good news is that there is plenty of help out there. Individuals with dementia may also have problems with incontinence, especially in later disease stages. Furthermore, though they may feel ashamed or embarrassed when they have an accident, they may not understand what they should do next (i.e. finding clean pants, cleaning themselves, etc.). They may not even realize that they have wet or soiled themselves, which can lead to skin problems or infections.
Without understanding the problem, people could jump to the conclusion that their loved one is suddenly getting too lazy or simply doesn't care. This is so rare, that it should be the very last consideration when seeking a cause. Although incontinence is usually not an emergency, problems with incontinence should be reported to the doctor.
There are two types of incontinence:
- Urinary incontinence - when someone loses control of their bladder.
- Faecal incontinence - when someone loses control of their bowels.
This may happen all or most of the time, or may just be a case of occasional leakage. Urinary incontinence is far more common than faecal incontinence. Both types of incontinence may be treatable, so it is always important to consult the GP.
Physiological or Medical Causes
- Infections, such as urinary tract infection, urethritis, or vaginitis, can cause loss of urine control.
- Men are especially susceptible to infection after prostrate surgery. Prostrate problems in men can cause retention of urine.
- In woman, constipation or fecal impaction can block the bladder so that urine leaks past the blockage point.
- In older women, weak pelvic muscles can sometimes cause "stress incontinence" or "leaking". This may happen when a person laughs, coughs or sneezes.
- Chronic illness such as diabetes, Parkinson's disease, strokes or any condition which limits mobility and/or causes chronic pain (e.g., rheumatoid arthritis) can make it difficult to get to the bathroom.
- Vision changes making it difficult to find bathroom (or recognize)
- Dehydration - may cause irritation or eliminating signals
- The urge or signal to go to bathroom may no longer be understood or received by the brain.
- Fluids having a diuretic effect, such as coffee, tea, cocoa, beer, cola, can affect control of urine.
- Medications, especially tranquilizers (Thorazine ®, Haldol ®, and Mellaril ®), sedatives (including barbiturates and Valium ®), hypnotics (Noctec® and Dalmane®), and anti-depressants, can affect incontinence.
- These are often giving to facilitate sleep or calm behaviour but these drugs can also affect incontinence.
- Diuretic medications such as Lasix®, HydroDIURIL ® can also increase frequency of urination.
- Distance to bathroom may be too far
- Bed may be too high from the floor, making it difficult for the person to get up.
- Floor and toilet seat may be the same colour ... making it difficult to find the toilet
- Improper footwear may cause person to be afraid of falling
- Person may have trouble undressing to go to the toilet.
- Lack of privacy
- Poor lighting may make it difficult to find the bathroom or to locate the toilet inside the bathroom ... Orientation cues (signs) may be lacking which could help the person locate the bathroom
- In a nursing home ... Being in bed with guard rails, being restrained, or lying on protective pads may give residents the message that they are expected to be incontinent.
- May not remember what to do once in bathroom
- Task may be too complicated
- Person may need help undressing, sitting on the toilet, wiping or rising from the toilet.
- Person may be fearful or anxious about having to partially undress in front of an unfamiliar caregiver.
- Caregiver may not be giving simple or clear enough instructions
- Caregiver may be rushing
- Person may no longer be able to express need to urinate.
- Long term memory of standards ... toiletry and personal care may over-ride message
- Observe carefully and assess the problem:
- Do accidents happen only at certain times of day as at night?
- How often does the person urinate?
- Did the incontinence begin suddenly?
- Is the person urinating in improper places, such as flower pots or in closets or in the kitchen sink?
- Do accidents happen on the way to the bathroom?
- Keep a diary or a log for several days noting times when accidents occur and the amount of fluid intake and output.
- This information will be helpful to the doctor.
- Have a thorough medical examination to discover any possible infections or medication problems that may be contributing to the incontinence.
- If a person has a fever that persists for more than 24 hours, report it to the doctor at once.
- Urinary tract infections are often accompanied by fever and can be dangerous if left untreated
- Be aware that a number of medications can be used to treat incontinence.
- However, these drugs may cause side effects such as a dry mouth and eye problems and therefore must be carefully monitored.
- If a diuretic is being taken, it is important to carefully consider the times of day when it is given.
- Consider a continence diagnostic evaluation if the cause of the incontinence is still unknown. This would involve a series of tests that can determine how well the urinary system is functioning.
- These procedures are, however, uncomfortable and expensive and the benefits need to be carefully evaluated on an individual basis.
- Be sure the person is drinking adequate fluids - a minimum of 5 - 8 glasses daily.
- Many dementia victims forget to drink or no longer recognise the sensation of thirst.
- A wide variety of substances act as fluids, e.g. jello, Popsicles, ice cream.
- Also, try herbal teas and decaffeinated coffee; caffeine can affect incontinence adversely.
- Set up a regular schedule with specific times for the person to have something to drink, e.g., with meals and three daily snacks
- Observe toileting pattern of the person both during the day and at night ... Try and toilet just before his/her expect time. This may vary from every two to four hours.
- Toilet before and after meals and immediately before going to bed.
- Make sure the person actually urinates before getting off the toilet.
Try these communication techniques:
- Simplify the steps involved ... Do one step at a time ... Use short words and short simple instructions. For example say "sit down."
- Watch for non verbal clues that the person with dementia has to go to the bathroom, such as reaching for a belt, tugging at a zipper or taking pants down.
- Also watch for restless behaviour or facial expressions that may signal distress.
- Make sure that sitters, nursing home staff or other caregivers understand the terms or words that are familiar.
- Some people may use children's words or slang like "pee," "tinkle," or "take a leak"
- Listen carefully, because the person may say the wrong word. For example, "I want tea" or "take a peek".
- Even severely impaired people do care when they have had an accident.
- Saying something like "Soon, everything will be all right," or "Don't worry, everything will be fine", may help to reassure the person.
- Quietly praise the person if he/she has been successful.
- Avoid reprimanding the person if there has been an accident.
Coping Strategies (cont)
- Simplify clothing.
- Try Velcro tape instead of zippers or buttons.
- Try elastic waistbands for trousers or wrap around skirts.
- Use underpants when possible ... They can serve as a reminder to stay dry and as a stimulus to use toilet when wet.
- Change clothes when they are wet ... Try not to let the person become accustomed to wet clothes.
- Select clothing that is washable and does not need ironing.
- Tennis shoes may be easier to keep clean if person is incontinent
- Adult briefs, commonly called 'undergarments' are sold by hip and waist size.
- Washable briefs are available with snapping plastic outer layer.
- Disposable briefs ('Attends' by Proctor and Gamble, 'Depend' by Kimberly Clark) are very expensive.
"Washable pants with disposable pads are an alternative for urinary incontinence only. Pants are about $14.00 each, plus pads, sold by hip and waist size. (Kanga pant, Tranquility Brief or Dignity pant.) Kotex Maxi-Thins or other pads designed for menstrual flow can be used. Pin pads to pants. Try different kinds of garments to see which works best for the person. These products are available at medical supply houses, drugstores and some grocery stores. Prices vary considerably from store to store. None of these garments is covered by Medicare."
- Wash the skin after any accident.
- It is important to keep the person's skin clean and dry to prevent rashes and sores.
- There are special products available which act as both soaps and skin conditioners.
- Check with your local pharmacist; also ask about a cream for adult diaper rash
Signs to help locate the bathroom:
- Put a sign on the bathroom door using a familiar word,
- eg., "bathroom"; 2-3 inch letters should be used for the sign, with letters evenly spaced and boldly printed.
- If a person is no longer able to read, try a picture of a toilet
In long term care settings:
- Try hanging a brightly colored awning or a globe over the bathroom door so that people can see it from a distance in the hallway.
- Consider painting all public bathroom doors a bright primary color, such as red, so that the door is visible and looks different from the other doors in the hallway.
- If a person is having trouble urinating, try giving a glass of water to drink while sitting on the toilet, or let the water run in the sink, or give the person a glass of water with a straw to blow bubbles with.
- It may be helpful to gently rub the person's lower back to stimulate reflexes or to stroke the lower abdomen over the bladder.
- If the person is particularly hyperactive or anxious, allow him/her to get up and down from the toilet a few times.
- Music can sometimes have a calming effect.
- Try and distract the person with a magazine or something to hold, such as a knotted pair of socks, to keep him/her busy while sitting on the toilet
If the person is incontinent at night:
- Try putting a chamber pot in the room close to the bed.
- Consider putting a commode beside the bed, especially if the person has trouble moving around.
- Make sure there are nightlights in the bathroom, hallway and bedroom.
- Make sure there is no clutter (throw rugs, chairs) lying in the pathway to the toilet. Falls often occur on the way to the bathroom at night.
- Make sure footwear is not floppy or slippery.
- Use disposable pads and rubberized flannel sheets to protect bedding.
- Try using a draw sheet in bed.
- This is a regular sheet folded in half lengthwise and tucked in across the bed. It can hold a plastic pad in place between it.
- Should the person have an accident, there is only the draw sheet and the pad to change
Night incontinence in long term care settings:
- Observe carefully the toileting patterns of residents on all shifts and develop individualized toileting schedules.
- The midnight staff should watch for any stirring or movement indicating that someone may need to get up.
- Staff may have to gently wake a resident every three or four hours to toilet.
- Make sure that there is adequate lighting in the corridors and the bathrooms.
- Walking with the person to the toilet, walking him/her back to bed, and tucking the person into bed can have a soothing effect that will contribute to better sleep for an agitated person.
- When using a public restroom, where either the caregiver or the dementia victims must go in the wrong sex bathroom:
- Ask someone to stand at the door while you assist the person.
- Consider posting a sign on the restroom door that reads, "Out of Order," if it's unoccupied
- A raised toilet seat with grab bars makes it easier for a person to get on and off the toilet.
- Make sure the seat is fastened securely to the toilet so that it does not slip when the person sits on it.
- Padded (soft) toilet seats are more comfortable for the person who must sit for some time.
- If getting to the toilet is a problem, place a chair style commode near the person's bed or on the ground floor, so that he/she does not have to climb the stairs.
- Leave the top off so that the person can easily identify it as a toilet ... Also make sure the commode is stable.
- For someone at home needing help in the bathroom,
- keep a bell or light handy.
- Consider hooking up a simple intercom system.
- Grab bars attached to the toilet seat are preferable to wall mounted, floor or angled bars, which are not really designed to suit the grasp, reach and strength of an older person.
- At home, construct a toilet stall with a safety bar (made from a broom or mop handle) which crosses the person's lap as he/she sits on the toilet.
- This will give the person something to hold onto and may encourage a restless person to stay put.
- Urinals and bedpans are available for both men and women ... For men, there is a spill proof urinal which can be kept in bed.
- These aids are available through medical supply houses, large drug Stores and some department stores for rental or purchase.
- Also try local nursing homes who may give advice on a variety of bathroom aids.
- Medicare, or major medical insurance may pay all or part of the cost of equipment ordered by a physician.
- Purchase washable chair cushion covers ... Put them over large garbage bags to waterproof cushions.
- Soiled clothing hidden in a closet, under the bed or in a dresser drawer may be a sign of incontinence.
- Incontinence can be a difficult problem for staff in nursing homes to keep up with.
- It is important that staff check residents who are wearing briefs at frequent intervals to prevent infections, skin rashes and sores.
- For families caring for an incontinent person at home, contact local Visiting Nurse Association for suggestions on how to cope.
- In the later stages of dementia, the use of indwelling catheters is rarely recommended ... Infections frequently develop and lead to other problems.
- Catheters are necessary only when the person has significant skin sores or when there are other overriding medical reasons.
- It is very important to respect the privacy and dignity of the person who may be having problems with incontinence.
- Losing control can be a terribly humiliating and embarrassing experience and caregivers need to be sensitive to these feelings.
- Every effort should be made to preserve the person's self-esteem, for many dementia victims are quite aware of their deficits.
- Family members and other caregivers also may feel embarrassed or awkward when assisting with toileting and should be aware that these are normal feelings.
- Sometimes people find cleaning up to be a very difficult and unpleasant task and may gag ... Try to be calm and reassuring and recognize that both of you probably feel quite uncomfortable in this situation.
- An air freshener may help with the smell.
- Physicians and other health care professionals should be aggressive in identifying, evaluating and treating urinary incontinence. This is important in preventing complications that could eventually lead to death.
- Put lids on waste paper baskets and other containers.
- In choosing a nursing home, notice how incontinence is managed ... "Ask the Director of Nursing questions:
- Do they have a bladder-training program?
- What percentages of the residents are on catheters? (Should be minimal.)
- How many people have bedsores? (This is not a good sign.)
- Does the home use air mattresses or egg carton foam pads? (These help prevent bedsores.)
- How does the home look and smell? (A strong urine odor is not good). (Brink, 1980)
- Some families have found that limiting liquids after supper helps with nighttime incontinence ... However, some medical experts discourage this practice, believing that many peoples' bladders do not function properly because of inadequate fluid intake.
- Problems with Constipation:
- If this is a new problem, check with the doctor, since constipation can be a symptom in many illnesses.
- Try a high-fiber diet adding bran to cereal or muffins.
- Be sure the person is drinking at least 6 to 8 glasses of fluid daily.
- Make sure the person gets plenty of regular exercise.
- Ask your physician about stool softeners (Metamucil, Konsyl, Colegel).
- These are sometimes necessary when people have had a history of constipation.
- Try and establish a routine to help keep track of the person's bowel movements ... because of memory impairment, people with dementia often forget when they have gone.
- The urge to go is often the strongest the first hour after breakfast.
Brink, Carol. Promoting Urine Control in Older Adults: Assessing the Problem. Geriatric Nursing, 1(4), 1980.
Diokno, Anapas. Practical Approach to the Management of Urinary Incontinence in the Elderly. Comprehensive Therapy, 9 (7), 1983.
Gwyther, Lisa. Care of the Alzheimer's Patients: A Manual for Nursing Home Staff. American Health Care Association and the Alzheimer's Association (ADRDA), 1985.
Mace, Nancy and Rabins, Peter. The 36-Hour Day. Baltimore: The Johns Hopkins University Press, 1981.
Powell, Leonore and Courtice, Katie. Alzheimer's Disease: A Guide for Families. Massachusetts: Addison-Wesley Publishing Company, 1983.
Ouslander, Joseph, Robert Kane, and Itamar Abrass. Urinary Incontinence in Elderly Nursing Home Patients. Journal of the American Medical Association, 248 (10), 1982.
Safford, Florence. Caring for the Mentally Impaired Elderly: A Family Guide. New York: Henry Holt and Company, 1986.
Wells, Thelma and Carol Brink. Promoting Urinary Control in Older Adults: Helpful Equipment. Geriatric Nursing, 1(4), 1980.
THE CAREGIVER ROLE
What is a Caregiver
The Caregiver Defined
Who Do Caregivers Care For
Accepting the Reality of Dementia
6 Steps to Successful Caregiving
Caregiver's Are Not Alone
Asking For & Getting Help
The Caregiver Code
Rights of a Caregiver
Unmet Needs Of A Caregiver
Caregiver And Work
Feelings And Caregiver Stress
Questions & Answers
STRESS, COPING & FEELINGS
The Caregiver Code
Rights of The Caregiver
Coping With Stress
Feelings And Caregiver Stress
Stages Of Alzheimer's
Helping Children Understand
Protecting Yourself From Burnout
Making Time For Reflection
How is Competency Defined?
Power of Attorney
What is an Advanced Directive?
Do I Really Need a Will or a Trust?
Importance of Communication
Communicating With Someone Who Has Alzheimer's
Your Approach Sets The Tone
Think Before You Speak
Doing Tasks Together
Having Trouble Being Understood
Things NOT To Do
When It Just Fails
TIPS AND ISSUES
New To Family Caregiving?
Places To Turn For Caregiver Supoort
Take Advantage of Community Support
Random Tips From Other Caregivers
Providing Long Distance Care
When To Stop Driving
Dealing With Family Conflict
Tips on Sundowning
Helping Children Understand
Pet & Toy Therapy
Tips For Medical Appointments
Dealing With Resistance
Tips For Day To Day
Intimacy And Sexuality
Visiting A Person With Dementia
Music And Dementia
Tips For Holidays And Gatherings
Art as Home Therapy
RESEARCH & DONATIONS