Measuring Dementia in People with Intellectual Disabilities

There are an estimated 5.3 million people in the U.S. with Alzheimer’s disease and by the year 2030, that number is expected to increase to 7.7 million. This devastating disease is the most common form of dementia and according to the Alzheimer’s Association, someone is diagnosed every 65 seconds.

Because people with Down Syndrome experience accelerated aging, they are at a greater risk for this disease. According to the Down Syndrome Society, about 30 percent of people with Down Syndrome who are in their 50s have Alzheimer’s. That number approaches 50 percent for those in their 60s.

Although there is no cure for dementia, an early diagnosis can have a significant effect on maintaining an individual’s quality of life. However, accurately evaluating symptoms in a person with Down Syndrome can be challenging. Many dementia assessment tools require verbal responses from the person receiving services, a difficult task for people who are nonverbal or have limited expressive language. This can lead to an inaccurate assessment and a lack of personalized treatment that’s often needed as the disease progresses.

To overcome this challenge, staff from Bridgewell deployed the Functional Assessment Tool, developed by former consultants. It is an intuitive, user-friendly tool for caregivers to better identify and track dementia. By using it, Bridgewell’s care team can accurately evaluate each person, measure the progression of the disease, and make modifications to the care plan, despite a person’s inability to speak or relay personal challenges. Adjustments made to the care of a person with dementia, based on the results of the Functional Assessment Tool, have been proven to improve quality of life and help maintain a high level of safety.

In creating this proprietary method of measuring the progression of dementia, the Functional Assessment Tool identified five general skill areas that were most important to asses, including: selfcare, eating, independent living, mobility, and behavior. Each of these skill areas was then separated into specific activities, which are measured with a simple number rating representing an individual’s capabilities in that area.

During an initial assessment, each person’s baseline is established. If subsequent testing shows an increase in the rating specific to a skill area, a decline is detected. Only professionals, informed family members and caregivers who are familiar with the person and their daily routines should use this assessment tool. But no special training is needed, and it can be quickly adopted and used to gather data. It is recommended that people with Down syndrome be tested at age 35 and other people with intellectual disabilities at age 55. Follow-up assessments are conducted annually at a minimum and more frequently if changes are observed.

Since its implementation, The Functional Assessment Tool has shown tremendous value. One example is of a young woman who moved into a Bridgewell residential program at 22 years-old. At the time, she was mostly independent, needing only verbal cues to complete basic tasks. But over the years she experienced a significant decline in the areas of mobility and independent living. Following medical and clinical assessments using The Functional Assessment Tool, changes in care were made and items such as a gait belt and tilt-in-space wheelchair were brought in to better accommodate her needs. She now lives in a residence and attends a day program that specializes in supporting people with dementia.

People with intellectual disabilities like Down Syndrome are disproportionately affected by Alzheimer’s but with new techniques and tools like this, family members and others can now catch the signs of disease earlier and more accurately assess a person’s regression in a specific skill area. This increased accuracy allows for more effective program and medical treatment planning, and ultimately a higher quality of life.

The Functional Assessment Tool, used by Bridgewell, was created by Susan Craven, M. Ed.,  Joseph Aurelin, CCC SLP and Kathryn Rodgers, PT and has been recognized by CARF, an independent, nonprofit accrediting body whose mission is to promote the quality, value and optimal outcomes of services through a consultative accreditation process and continuous improvement services that center on enhancing the lives of the persons served, which identified it as a program with potential to be adopted on the national level.

For more information about on the Functional Assessment Tool, please contact Susan Craven at nevarcllb@comcast.net.

By Sue Craven, M. Ed., Former Clinical Director for Day Habilitation Programs and Behavioral Specialist at Bridgewell