by Susan McCurry, Ph.D.
Wandering at night, bedtime agitation, disturbed sleep, and night-day reversal are common problems for persons with Alzheimer's disease (AD). Although not everyone with AD develops sleep problems, when present they are very stressful for family members. Caregivers who are awakened frequently during the night to reassure or assist the AD patient eventually become exhausted. This exhaustion, and its associated impact on physical and emotional health, is one of the most common reasons caregivers are forced to institutionalize their loved ones.
Genetic Studies of Familial AD (P.I. Thomas Bird, M.D.) has been funded since the onset of our Center in l985. It has received international recognition for its discovery and identification of genes in AD and other dementing disorders. This project continues to search for genetic causes of AD. The project has previously discovered genes for rare causes of early onset dementia and is now focusing on genetic factors in late onset AD. Late onset AD is much more common than early onset forms and the genetic factors in late onset AD are likely to be complex and difficult to determine. The project is collecting genetic information on families with three or more living persons with AD in two or more generations and analyzing DNA obtained from blood samples followed by genetic statistical methods called linkage analysis. Interested families should contact the research nurse, Ellen Nemens at 206-764-2112.
Sleep problems in AD can have many causes. Most persons with dementia, and many family caregivers, are older adults. Older people tend to have more difficulty falling asleep at night, they wake up more frequently during the middle of the night and stay awake longer, and they often nap during the day. A variety of age-related diseases (such as arthritis) and common prescription or over-the-counter medications can also negatively impact sleep. Finally, sleep disturbances may be caused by an underlying depression, bereavement, or anxiety disorder. Many of these medical or psychiatric causes of sleep loss are treatable. Thus, it is important for all older adults with sleep complaints to be evaluated and treated for chronic conditions that may be interfering with their sleep.
Sleep problems observed in AD patients are similar to those found in the sleep of normal older adults, although they occur more frequently and tend to be more severe in AD patients than in the general population. Alzheimer's disease damages brain cells that are important for initiating and maintaining sleep. The sleep changes observed in AD tend to become more pronounced as the disease progresses. Persons with AD are also prone towards "sundowning" agitation, which is a tendency to become more agitated or confused at some point in the 24-hour cycle (frequently the late afternoon or evening). An understanding of the periodicity with which agitated behaviors occur can be important for the evaluation and management of sleep disturbances in dementia patients.
Improving sleep can improve the quality of life of both the person with AD and his or her caregiver, but treatment is sometimes difficult. Sedating medications can increase the patient's risk for falls and confusion, and may not be appropriate for long-term use. A number of non-medication approaches are widely recommended, including:
Finally, as with all dementia care, it is important to find a sleep treatment plan that makes sense to the patient and caregiver, and that targets factors that are both relevant and modifiable in their particular situation. For example, mildly demented patients without other significant behavior problems might benefit from a basic behavioral program that re-establishes a regular bed and rising time and reduces daytime napping. However, some caregivers may be reluctant to eliminate patient naps or modify existing sleep/wake routines, out of fear that the change will increase their daily caregiving burden more than it will improve nighttime sleep quality. In these situations, it may be more useful to enlist the help of family or friends to establish a program of regular nighttime respite care to give the caregiver a needed psychological and physical break from patient supervision. For patients whose sleep problems are associated with significant mood or disruptive behaviors, a combined behaioral and medication treatment approach may be necessary.
The type of individualized sleep program described above can be developed with the help of your family health care provider, and is more likely to be effective than a "one size fits all" approach. AD patients who are experiencing sleep problems and living in the community with a family caregiver may also be eligible for participation in the Nighttime Insomnia Treatment and Education for Alzheimer's Disease (NITE-AD) study at the University of Washington. For more information about this federally funded research program, contact Amy Moore at 206-685-9169.