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Make contingency plans for dementia for loved one with Down syndrome

At Chayet & Danzo LLC, our lawyers help Coloradans with Down syndrome, also called DS, and their families and loved ones create estate and long-term care plans to provide safety nets throughout the lives of people with DS and related conditions. While it is well-known that DS is associated with a higher risk of early onset Alzheimer’s disease and other dementias, a new study sheds more light on the link between these conditions.

According to the study, “virtually all adults with DS” have Alzheimer’s disease neuropathology at age 40, but they can live for years without symptoms.

The findings are dramatic, with three of every five people with DS having Alzheimer’s or another dementia by age 55. In the 40 to 54 age range, the risk of having dementia is 40 percent.

Three University of Wisconsin professors conducted the research using data from Wisconsin Medicaid claims for a decade from 2008 through 2018. The data was associated with almost 3,000 adults with Down syndrome. The new findings are likely more precise than earlier research because the data was drawn from a sampling of the population without them having to agree to participate in a study because their data was anonymous.

One of the authors quoted in Disability Scoop said that while resources have targeted improvement of the physical health of people with DS, the findings suggest the importance of more focus on “memory and cognitive function as people age … [and that] the prevalence and incidence data show us areas where we need to invest resources in services, treatment and research.”

These findings are important from a public health perspective, but families also must consider the real possibility that their loved ones with DS face a high risk of dementia at a relatively young age. Discuss with an estate planning and life planning lawyer the dimensions of the future needs of such a loved one, including financial planning to preserve eligibility for public benefits and investigation of a range of care facilities.

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