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For people with Down syndrome, family members, caregivers and professionals.

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Aging and Down Syndrome: A Health & Well-Being Guidebook

Author: National Down Syndrome Society - Resource

The resource linked below is a guidebook from the National Down Syndrome Society . According to the Introduction, "Adults with Down syndrome, along with their families and caregivers, need ac

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Reducing Risk of Getting Alzheimer's Disease

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Key Points Alzheimer's disease is more common in people with Down syndrome. Presently, we do not know how to prevent or cure Alzheimer's disease. We may lower the risk of developing Al

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Staff Turnover

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

For people living in a group home or participating in day programs, the staff members often become like family. This is especially true if the person does not have other family involved in his life bu

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Weight Loss and Alzheimer's Disease in Down Syndrome

Author: Fleming et al. - Journal of Alzheimer's Disease (2023)

Abstract Background:  Virtually all adults with Down syndrome (DS) develop Alzheimer's disease (AD) pathology, but research gaps remain in understanding early signs of AD in DS. Objec

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Agitated or Challenging Behavior in People with Down Syndrome and Alzheimer's Disease

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Agitated or challenging behavior can be a symptom that people with Down syndrome (DS) who have Alzheimer’s disease (AD) can have. When it occurs, careful assessment is important. An evaluati

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Hypoglycemia (Low Blood Sugar)

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

What is hypoglycemia? Hypoglycemia is the medical term for low blood sugar or low glucose. Blood sugar or glucose levels can be measured with a blood test. Healthcare providers make the diagnosis of h

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Blood Counts in Children with Down Syndrome

Author: Harvey et al. - Pediatric Blood & Cancer (2022)

Abstract Background:  Children with Down syndrome (DS) are more likely to have hematologic and immunologic abnormalities compared to their typically developing peers, but normal ranges have n

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Diagnostic Overshadowing: "All Is Not Down Syndrome"

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Many families have reported that, when they have told a health care provider about a symptom their loved one with Down syndrome is experiencing, the provider has, in effect, said, “It is jus

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Alzheimer's Disease Story

Author: Abby Rowley, LCSW - Clinical Therapist, Adult Down Syndrome Center

The stories linked below were developed to help individuals with Down syndrome understand what Alzheimer's disease is and how Alzheimer's disease may affect someone i

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Support Groups for Caregivers of Individuals with Down Syndrome and Alzheimer's Disease

Author: Various Organizations - Resource List

Alzheimer’s disease not only impacts the individual with the disease but also the individual’s family, friends, and caregivers. Several organizations provide in-person, online, and

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Alzheimer's Disease Prevention and Healthy Aging in People with Down Syndrome Webinar Recording (5/18/2022)

Author: Brian Chicoine, MD - DSAW Webinar

On May 18, 2022, the Down Syndrome Association of Wisconsin hosted a webinar called "Alzheimer's Disease Prevention and Healthy Aging in People with Down Syndrome," presented

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Obstructive Sleep Apnea, Cerebrovascular Disease, and Amyloid in Older Adults with Down Syndrome Across the Alzheimer's Continuum

Author: Lao et al. (2022) - Sleep Advances: A Journal of the Sleep Research Society (2022)

Abstract We determined the extent to which obstructive sleep apnea (OSA) is associated with increased cerebrovascular disease and amyloid burden, and the relation of the two processes across clinical

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Association of Alzheimer Disease with Life Expectancy in People with Down Syndrome

Author: Iulita et al. - JAMA Network Open (2022)

Abstract Importance:  People with Down syndrome have a high risk of developing Alzheimer disease dementia. However, penetrance and age at onset are considered variable, and the association of

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Loss of Skills and Alzheimer's Disease

Author: Brian Chicoine, MD - "Ask Dr. Chicoine" LuMind IDSC Foundation

Alzheimer’s disease is a form of cognitive impairment and decline in skills that is more common in people with Down syndrome. It is one, but not the only, type of cognitive impairment. In fa

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Considering Dignity of Risk in the Care of People with Intellectual Disabilities: A Clinical Perspective

Author: Chicoine & Kirschner - Perspectives in Biology and Medicine (2022)

Abstract The dignity of risk implies respect for individuals' right to make their own decisions, to participate in a broad range of desired activities, even if those activities have risk, and

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Vitamin B12 Deficiency

Author: Brian Chicoine, MD - Adult Down Syndrome Center

Vitamin B12 deficiency is an issue that we often check for in individuals who receive medical care at the Adult Down Syndrome Center. We usually get enough vitamin B12 from the foods we eat. Vitamin B

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How is Alzheimer's Disease Diagnosed in a Person with Down Syndrome?

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Alzheimer’s disease is a progressive neurological condition. It is a type of dementia (more information about dementia is available on the National Institute on Aging website ). Alz

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Helping Children and Adults with Down Syndrome to Cope with Grief Webinar Recording (7/28/2021)

Author: Rose Reif, MS, LCMHC, CRC, BC-TMH - Down Syndrome Association of Delaware

On July 28, 2021, the Down Syndrome Association of Delaware hosted a webinar called, "Helping Children and Adults with Down Syndrome to Cope with Grief." The presenter was Rose Reif,

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Mechanistic Analysis of Age-Related Clinical Manifestations in Down Syndrome

Author: Chen et al. - Frontiers in Aging Neuroscience (2021)

Abstract Down syndrome (DS) is the most common genetic cause of Alzheimer's disease (AD) due to trisomy for all or part of human chromosome 21 (Hsa21). It is also associated with other phenoty

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Cross-Sectional Exploration of Plasma Biomarkers of Alzheimer's Disease in Down Syndrome: Early Data from the LIFE-DSR Study

Author: Hendrix et al. - Journal of Clinical Medicine (2021)

Abstract With improved healthcare, the Down syndrome (DS) population is both growing and aging rapidly. However, with longevity comes a very high risk of Alzheimer's disease (AD). The LIFE-DSR

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Aging and Alzheimer's Disease in Adults with Down Syndrome Webinar Recording (11/10/2020)

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Adult Down Syndrome Center

The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on November 10, 2020. Dr. Chicoine is the co-founder and medical director of the Adult Down Synd

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Alzheimer's Disease Video Journal

Author: Adult Down Syndrome Center - Videos

In September 2017, we started filming a video journal with Colleen, a woman with Down syndrome and Alzheimer's disease, and Bo, Colleen's sister and caregiver. Colleen was diagnosed wi

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NTG - Early Detection and Screen for Dementia (NTG-EDSD)

Author: National Task Group on Intellectual Disabilities and Dementia Practices - Dementia Screening Tool

The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) developed a screening tool called the NTG - Early Detection Screen for Dementia (NTG-EDSD). The NTG-EDSD&

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What is Death?

Author: Adult Down Syndrome Center

This handout talks about death. It describes what it is and how it might make us feel.

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Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.

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