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

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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

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

Grief and Loss Podcast Episodes

Author: Rose Reif, LCMHC, CRC, BC-TMH - Multiple Organizations

Rose Reif, a licensed clinical mental health counselor, certified rehabilitation counselor, and qualified developmental disability and mental health professional, has been featured on two podcast epis

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

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

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

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

Title:  Alzheimer's Disease Prevention and Healthy Aging in People with Down Syndrome Date:  May 18, 2022 Presenter:  Brian Chicoine, MD Host Organization:  

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

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 &n

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,

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

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

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&

Living with Dementia: A Booklet About Dementia for Families and Carers of a Person with Down's Syndrome

Author: Down's Syndrome Scotland - Resource

This booklet about dementia for families and carers was developed by Down's Syndrome Scotland. It was designed to help in the care and support of a person with Down syndrome and dementia. &

Let's Talk about Death: A Booklet about Death and Funerals for People with Down's Syndrome

Author: Down's Syndrome Scotland

This booklet for individuals with Down syndrome explains death using easy-to-read language. It is provided by Down's Syndrome Scotland (www.dsscotland.org.uk/resources/publications/).

Alzheimer's Orientation Book

Author: Adult Down Syndrome Center

An orientation book can be used for people with Alzheimer’s disease or dementia to help them remember things about their daily life.

Coping With Transitions, Loss, and Grief

Author: Melissa Levin, MSW, LICSW

This is a handout with information on coping with transitions (such as leaving high school, changes in family dynamics, etc.) and the feelings of loss and grief that can accompany these transitions.

Keeping Connected to Someone with Memory Loss

Author: All Trust Home Care

This two-page resource provides ideas for staying connected to someone who is experiencing memory loss.

Seizures in People with Down Syndrome and Alzheimer's Disease

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

We were sent a question about seizures in a person with Down syndrome who developed Alzheimer’s disease. The individual continued to experience seizures despite being treated with l

Bereavement

Author: Down's Syndrome Association - Booklet

People with and without Down syndrome experience grief and sadness when a loved one dies. We have learned from individuals with Down syndrome and their families that grief can be experienced different

Alzheimer's Disease & Down Syndrome: A Practical Guidebook for Caregivers

Author: National Down Syndrome Society - Resource

The guidebook linked below was published by the National Down Syndrome Society "to help empower families and caregivers with knowledge about the connection between Down syndrome and Alzheimer

Grief - Ways to Help Support Someone with Down Syndrome Who is Grieving

Author: Shana Sexton, LCSW - Social Worker, Adult Down Syndrome Center

1. Acknowledge and normalize the person’s feelings. It’s important for someone to know that their feelings, whatever they are, are normal and they are not alone. It can help just t

Grief - 10 Things I Know

Author: Shana Sexton, LCSW - Social Worker, Adult Down Syndrome Center

I’ve heard it said that everyone experiences loss in their lives, although some people have more than others. People with Down syndrome encounter situations involving grief and loss just lik

Jenny's Diary: A Resource to Support Conversations about Dementia with People who have an Intellectual Disability

Author: Karen Watchman, Irene Tuffrey-Wijne, & Sam Quinn - University of Stirling

The resource linked below is a free to download booklet and set of postcards aimed at supporting conversations about dementia with people who have an intellectual disability. Access the Booklet &n

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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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