by Sharlene Gentry and Nora McKinney
Note: Each issue of Dimensions features a contribution from one of the Alzheimer's groups in Washington. This article is reprinted with permission from the Alzheimer's Association Inland NW Chapter.
Recent studies indicate that people with Down's Syndrome are living longer than they did a decade ago, and are at risk of developing Alzheimer's Disease (AD) especially after the age of 45 to 50. Diagnosing AD in a person with Down's Syndrome can be difficult because of pre-existing limitations in cognitive and verbal skills. Many individuals with Down's Syndrome also have other handicapping conditions including cardiac, hearing, and sight limitations.
Because of this, traditional testing methods may not be appropriate for them. Observations of changes in behavior or functional abilities may be the best method of identifying AD in these individuals, and care givers who work on a daily basis with these individuals can often provide the most accurate assessment of such changes.
Once AD is diagnosed, the care and treatment of individuals who have both AD and Down's Syndrome presents a unique challenge to care providers. The State of Washington Department of Social and Health Services (DSHS), Division of Developmental Disabilities, operates 5 Residential Habilitation Centers, which provide residential care and special services to many of these individuals. One of these centers, Lakeland Village, in Medical Lake, Washington, is home to 263 people. Twenty-nine of these people have a diagnosis of Down's Syndrome.
The age range of residents with Down's Syndrome is from 31 to 68 years, and the functioning levels are from moderate to severe-profound retardation. Although research on appropriate care of individuals with AD and Down's syndrome is lacking, Lakeland Village care providers have taken their basic knowledge of how to care for those with disabilities and blended it with information provided by the Alzheimer's Association in order to create care plans that meet their resident's needs. For example:
|--People with Down's Syndrome may tend to be willful and ritualistic in their daily routines. When AD is also present, the person may become even more willful and place himself at risk due to confusion and lack of orientation to familiar surroundings. Lakeland staff have found it effective to redirect the residents over time to safer routines and rituals. For example, a gentleman who once enjoyed taking out the garbage daily, now sweeps the floor and fills the garbage cans.|
|--Showering can become a daily ritual of refusals. Caregivers have found it more effective to opt for fewer showers, offering tub baths as an option, and going to the beauty shop for hair care.|
|--Leisure activities once enjoyed may become dangerous. For instance, individuals who once enjoyed bicycle riding may become unsafe, riding in traffic or when it's dark outside, or without proper safety equipment. Care providers offer alternative supervised outings and new leisure activities such as music, pet and massage therapies.|
|--Sleep patterns may be altered, ranging from an increase in awake time at night, to falling asleep during routine activities such as grooming and eating. Allowing the person to guide his own routine and offering an earlier bedtime are two ways to accommodate these changes.|
|--Eating becomes difficult as eyesight diminishes. Dishes, place mats or tablecloths in contrasting bright colors may help the person distinguish food/liquid from the plate, cup, etc.|
|--Emotional instability in the form of crying and/or anger for no apparent reason or for small upsets may occur. Staff are encouraged to maintain a calming presence while using simple cues in an effort to determine why the person is upset.|
Although Lakeland Village care providers have developed individualized plans for care and treatment of residents with AD and Down's Syndrome, they encourage the further investigation of methods to provide appropriate, research based care for these individuals. In order to promote the most appropriate lifestyle for the individual, research about guidelines for care must be made available to caregivers of persons with developmental disabilities who develop co-existent Alzheimer's disease.