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DDS MEDICAL ADVISORY #98-3
Practical Guidelines for Care of Persons
with Down Syndrome and Dementia
Prepared by G. Kerins, M.D., F.A.C.P.
University of Connecticut Health Center
May 1998

PURPOSE:

To provide practical guidelines for persons who provide supports and services for people with Down Syndrome and dementia.

APPLICABILITY:

This advisory applies to all individuals of the department regardless of the facility of region in which they are served.

Introduction:

Persons with Down Syndrome as they age are at significantly higher risk for developing dementia of the Alzheimer's type. With improved medical care of persons with Down Syndrome and increasing life expectancy, the number of persons with Down Syndrome and Alzheimer's Disease will be dramatically increasing in the future. What follows then are some practical general guidelines for the care of such persons.

I. Try to confirm the diagnosis and eliminate other causes of increased confusion in persons with Down Syndrome and dementia.
  1. Exclude via detailed physical assessment any acute medical events or related processes.
  2. Review closely all medications especially medications that may be newly introduced, or where dosages of medications may have been recently changed.
  3. Try to establish an historical pattern with regard to the development and the progression of the cognitive deficits.
  4. Evaluate possible environmental causes of increased confusion. Factors to evaluate include:
  • Is the environment too large?
  • Is the environment changing?
  • Is there excessive or additional stimulation in the current environment?
  • Is the environment unstructured?
  • Are sensory changes causing distortion of the current environment?
II. Reduce the overall expectations in terms of daily activities in those with Down Syndrome and dementia
  1. Remove or simplify complicated tasks.
  2. Reduce steps involved in individual tasks.
  3. Avoid new tasks.
III. Look for reversible causes of increasing sleep disturbances
  1. Complete a medical evaluation.
  2. Consider pain as a cause of worsening sleeping pattern.
  3. Eliminate any underlying sleep disorder, i.e., sleep apnea or restless leg syndrome as contributing to the sleep disturbance.
  4. Realize that depression in persons with Down Syndrome and dementia can cause worsening sleep patterns.
  5. Check for any new or changed dosages of existing medications.
  6. Check for room temperature whereas excesses, either too hot or too cold, may precipitate sleep disturbances.
  7. Ensure that there are adequate night lights present in the bedroom.
  8. Try to change the sleeping environment as little as possible over time.
  9. Condition the person to spend time in the bed only when sleep is intended, and to avoid excess sleeping during the day as possible.
  10. Cut down on caffeine, colas, chocolate or other types of stimulants at least three to four hours before bedtime.
  11. Avoid any generally upsetting activities earlier in the night which may prevent normal sleep from occurring.
IV. Dealing with Hallucinations and Paranoid Behavior
  1. Eliminate any acute medical problems, medications or other related factors as contributing to the paranoia or hallucinations.
  2. Ensure that vision and/or hearing have not been abruptly altered which may be contributing to such misperceptions in reality.
  3. As stated, complete a medical and/or geriatric psychiatry evaluation as needed.
  4. Modify the environment and routine to maximize the impact of such behavioral changes on day-to-day functioning.
  5. Increase lighting at night which may reduce such hallucinations.
  6. Avoid medications that may paradoxically increase agitation or confusion.
  7. In dealing with reports of hallucinations or delusions, avoid direct argumentation or conflict with the person.
  8. Do not directly disagree as it relates to the reported hallucinations and changing behaviors.
  9. Respond appropriately to feeling of loss as they may relate to such hallucinations.
  10. Investigate any suspicions that may be founded to ensure that unusual reports are in fact hallucinations, delusions, and not simply realities.
  11. Use familiar distractions when dealing with hallucinations and paranoid thought processes.
V. Wandering can be Extremely Problematic in Persons with Down Syndrome and Dementia
  1. Exclude any reversible medical causes, i.e., acute conditions, medications, etc., as mentioned.
  2. Allow the person to wander if the environment is safe and secure.
  3. Maximize on the person's ability to want to walk by putting increasing structured exercise programs and walking programs in place.
  4. Remove clutter or other items that may reduce safety with wandering.
  5. Take the person for a drive in the car, a strategy which has been shown to reduce the need for wandering in certain situations.
  6. Distract with similar activities as noted.
  7. Construct distracting activities based on the person's prior stated interests.
  8. Check to make sure the person does not need any acute toileting.
  9. Improve lighting in the areas where the person is going to wander.
  10. Speak in a calm tone of voice when trying to distract the person from wandering.
  11. Always keep the person who wanders as safe and comfortable as possible, realizing that, assuming you are ensuring safety, wandering may actually be a beneficial activity.
  12. Realize that there is no specific anti-wandering medication.
VI. Eating
  1. Once again, look for reversible causes as stated.
  2. Complete a full dental checkup in as dental caries, edentulousness, gingival or gum disease may cause subtle changes in eating habits.
  3. Exclude depression as a cause of decreased appetite.
  4. Create appetizing odors which have been shown to enhance interest in eating.
  5. Improve lighting at mealtime.
  6. Reduce distractions and provide meals in a quiet, well-lit environment.
  7. Provide one food item at a time, i.e., making eating simple, realizing that making choices among multiple items on a plate may be difficult for persons with Down Syndrome and dementia, and may result in decreased eating overall.
  8. Evaluate any difficulties with chewing, swallowing, and possible aspiration.
  9. Modify sweets or nonessential foodstuff intake, as this may impact on normal eating.
  10. For overeating, provide smaller, less frequent meals.
  11. For undereating, try supplements, realizing that Carnation Instant Breakfast may have the same nutritional supplemental value as other canned supplements at much less cost.
VII. Bathing
  1. Exclude reversible causes of decreased interest or ability to bathe.
  2. Based on prior routine, find the best time to bathe which may require certain modification in schedules.
  3. Check that the bathroom and water are the right temperature, not too hot or too cold.
  4. Always respect privacy.
  5. Have adequate lighting.
  6. If possible, have instructions for bathing written on a prescription pad by a physician.
  7. Check routine scheduled medications as possibly contributing, i.e., the side effects from these, to decreased ability or interest in bathing.
  8. Approach bathing in a calm and quiet manner.
  9. Avoid lengthy discussions with those who are resistant to bathing.
  10. Generally try to simplify the task.
  11. Encourage a bath instead of a shower, which in some settings has been shown to be less disruptive or problematic.
  12. There is no documented need for bathing every day, and possibly substitute a sponge-bath for the need for routing bathing.
  13. Offer a reward for positive bathing experiences.
  14. Separate hair washing from bathing; this may reduce overall agitation.
  15. Distract while bathing. Some modalities may include soft music.
  16. Add tomato juice to bath water if persistent odor is present.
  17. Thoroughly dry after all bathing activities.
VIII. Agitated Behavior
  1. Once again, seek reversible medical and related causes.
  2. Check particularly, vision and hearing, which may cause increased agitation as deficits increase.
  3. Stress quiet time and other related quiet-like activities.
  4. Make sure that there is no increasing or new pain present.
  5. Keep the environment as simple as possible, and adhere to a consistent daily routine.
  6. Constantly orient the person to time.
  7. Distract with prior enjoyable activities as needed.
  8. Exercise regularly, as this has been shown to reduce agitated behavior.
  9. Rely on music, massage, and quiet readings to reduce agitated behavior.
  10. Maintain consistency of staff to reduce agitation as it may relate to staff changes.
  11. Seek alternate means of communication to elicit any other causes of agitated behavior.
IX. Incontinence
  1. Once again, exclude any reversible causes.
  2. Be particularly vigilant that medications may cause worsening or new onset of incontinence.
  3. Ensure that adequate fluids are taken.
  4. Monitor voiding times and patterns.
  5. Toilet before and after meals and at other routine times.
  6. Simplify clothing to ensure that removal is not such that clothing is contributing a functional aspect of incontinence.
  7. Use protective garments as needed.
  8. Protect the skin should incontinence occur, to reduce evidence of skin breakdown.
  9. Use signs and other nonverbal ways to remind persons regarding a voiding schedule.
  10. Where needed, use appropriate night lights and ensure appropriate nighttime footwear.
  11. Modify the bathroom to facilitate toileting. Bedside commodes may reduce episodes of functional incontinence.
  12. Keep a bell or light handy that may be used to call for help should the need for nighttime toileting occur.
X. Management of Family and Caretaker Issues are Important
  1. Deal directly with relocation and caretaker stress issues.
  2. Provide ongoing support, and help the family reduce overall expectations from the aging adult with Down Syndrome and dementia.

NOTE:

Be vigilant for co-morbid conditions that occur frequently in older persons with Down Syndrome and dementia. Such conditions include:

  • seizure disorders,
  • incontinence,
  • depressions,
  • thyroid disorders,
  • cardiac conditions and heart murmurs, and
  • sensory deprivation secondary to worsening cataracts.

The above have been provided as practical guidelines for the case and management of older persons with Down Syndrome and dementia. They focus on those certain activity of daily living skills which appear to be most problematic in this population and provide the best practical approaches.