Alzheimer's Disease and People with Downs
What is Alzheimer's disease?
Alzheimer's disease is a slowly progressive, degenerative disorder of the brain that eventually results in abnormal brain function and death (Janicki, 1995). Clinically, Alzheimer's disease is expressed as impairment in the cognitive and adaptive skills necessary for successful personal, community and occupational functioning.
The initial symptoms often appear very gradually. There may be some minimum memory loss, particularly of recent events. The individual may experience difficulty in finding the right words to use during casual conversations. Work performance may begin to deteriorate, and changes in behavior may become obvious.
As Alzheimer's disease progresses, memory losses become even more pronounced. There may be specific problems with language abilities. Persons affected may have difficulty naming objects or with maintaining a logical conversation. They may have difficulty understanding directions or instructions and become disoriented as to time of day, where they are and who they are with. They may also begin to experience loss of self-care skills, including the ability to use the toilet. Severe changes in personality may begin to become obvious, and their social behavior may be marked by suspiciousness and delusions.
Finally, the disease will progress to the point where all abilities to function normally are lost, and affected individuals need total care. The stages described may occur over different time periods in different individuals, ranging from 18 months to 20 years.
How many people are affected by Alzheimer's disease?
Alzheimer's disease accounts for more than 50 percent of the dementias seen in the general adult population. The estimated annual incidence of Alzheimer's disease is approximately 2.4 per 100,000 people age 40 to 60 and 127 per 100,000 people older than age 60. Estimates are that five percent of people over the age of 60 will have Alzheimer's neuropathology, and that this grows to 50 percent for the population age 85 and older. By the year 2000, more than two million Americans will be suffering from various stages of the disease (Janicki, 1994).
How many people with mental retardation are affected by Alzheimer's disease?
Most adults with mental retardation are at the same risk for Alzheimer's disease as are individuals in the general population. However, individuals are at greater risk of developing the disease if they:
Research from the Center for Aging Policy Studies at the New York State Institute for Basic Research in Developmental Disabilities show that the rate of occurrence of Alzheimer's disease among persons with a developmental disability appears to be about 2 to 3 percent of adults age 40 and older. People with Down syndrome make up about 60 percent of the adults with mental retardation who show signs of probable Alzheimer's disease ( Janicki, 1995).
How are people with Down syndrome affected differently by Alzheimer's disease?
People with Down syndrome have higher rates of Alzheimer's disease. A growing body of research suggests that people with Down syndrome also experience premature aging, perhaps as many as 20 years earlier than would be expected in normal aging (Hawkins and Eklund, 1994). They are often in their mid to late 40s or early 50s when symptoms of Alzheimer's disease first appear, compared to the late 60s for the general population.
Although about 20 to 40 percent of adults with Down syndrome show the behavioral symptoms of dementia, upon autopsy nearly all older adults with Down syndrome show the brain changes associated with Alzheimer's disease. The progression of the disease takes, on the average, about eight years--somewhat less time than among persons in the general population. Men and women seem to be equally susceptible.
The symptoms of the disease may be expressed differently among adults with Down syndrome. For example, at the early stage of the disease, memory loss is not always noted, and not all symptoms ordinarily associated with Alzheimer's disease will occur. Generally, changes in activities of daily living skills are noted, and there may be the onset of seizures when there had been none in the past. Cognitive changes may also be present, but they are often not readily apparent, or they may be ignored because of limitations in the individual's general functional level.
What are some signs that an older person with mental retardation may be developing Alzheimer's disease?
Recent studies of individuals with mental retardation have shown behavioral symptoms of Alzheimer's dementia in such adults may include, but are not limited to:
(1) the development
of seizures in previously unaffected individuals,
(2) changes in personality,
(3) long periods of inactivity or apathy,
(5) loss of activity of daily living skills,
(6) visual retention deficits,
(7) loss of speech,
(9) increase in stereotyped behavior, and
(10) abnormal neurological signs
(Janicki, Heller, Seltzer & Hogg, 1995).
How is Alzheimer's disease diagnosed in people with mental retardation?
There is no single diagnostic test for Alzheimer's disease. If the presence of Alzheimer's disease is suspected, a complete physical examination and more frequent medical, neurological and psychological evaluations are strongly recommended to establish the progressive nature of the symptoms.
A definitive diagnosis can only be made at the time of autopsy. The numerous test and evaluation procedures will result in a "possible" or "probable" diagnosis of Alzheimer's disease.
To make a probable diagnosis of Alzheimer's disease, it is necessary to observe a well-documented progression of symptoms. Complete evaluation must be performed periodically. Such evaluations or tests are necessary to rule out conditions that are not Alzheimer's disease, or are reversible forms of dementia. A complete evaluation should include:
Where does someone go to be evaluated for possible Alzheimer's disease?
A good place to start is with the person's physician. A neurologist, geriatrician or an internist can also be a valuable resource.
States may have specialized centers for the evaluation and treatment of people with Alzheimer's disease. These centers may provide geriatric evaluations and assessment procedures plus other services. States may also have specialized services for people with mental retardation who are aging. These may include special clinics of local mental retardation, mental health or aging agencies, and university affiliated programs in developmental disabilities.
What are the steps beyond diagnosis to help the individual?
Once the suspicion of Alzheimer's disease has been clinically confirmed, the person's family, caregiver, or paid providers may need to make changes in the person's daily routine.
First and foremost, the person must feel safe and secure in his or her environment. As a result of the complications associated with Alzheimer's disease, what may have been comfortable and familiar for the individual will become unrecognizable and result in unpredictable behavior.
A few of the tips to help the person cope with the effects of the disease include:
Hawkins, B. and Eklund, S. (1994). Aging-Related Change in Adults with Mental Retardation. Research Brief. Arlington, Texas: The Arc of the United States. (Single copy free with self-addressed stamped envelope.)
Janicki, M.P. (1995). Developmental Disabilities and Alzheimer's Disease: What You Should Know. Arlington, Texas: The Arc of the United States. (Order from The Arc, Publications Dept., 500 E. Border St., S-300, Arlington, TX 76010.)
Janicki, M.P. (ed.). (1994). Alzheimer Disease Among Persons with Mental Retardation: Report from an International Colloquium. Albany: New York State Office of Mental Retardation and Developmental Disabilities.
Janicki, M.P., Heller, T., Seltzer, G., & Hogg, J. (1995). Practice Guidelines for the Clinical Assessment and Care Management of Alzheimer and other Dementias among Adults with Mental Retardation. Washington, DC: American Association on Mental Retardation (444 North Capitol Street, N.W., Suite 846, Washington, DC 20001-1512).
Most of the information is taken from Matthew P. Janicki three publications cited above.
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