Older Adults
Welcome
Welcome
We are here to support you in every way possible and welcome you to contact us with any questions you may have.
| Director of Mental Health & Aging Support |
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Below you will find information that can be helpful for this stage of your families journey, as well as programs offered for this Age & Stage.
Lifelong Planning | Health & Screening | Aging| Connection between Down syndrome and Alzheimer's Disease | Support for Caregivers | | Mental Health | Program Offerings
LIFELONG PLANNING
- Letter of Intent - Useful checklist of showing what to communicate about their wishes and knowledge about their loved one with an IDD to future caregivers
- End of Life and Down Syndrome - A companion guide to NDSS’ Aging & Down Syndrome
- Thinking Ahead Matters - Supporting and Improving Healthcare Decision Making and End-of Life Planning for People with Intellectual and Developmental Disabilities
- Thinking Ahead - My Way, My Choice, My Life at the End
- Caring Futures - Support, skills and community for parents and caregivers of adults with disabilities and DSCBA partner.
HEALTH & SCREENING
The GLOBAL Medical Care Guidelines for Adults with Down Syndrome (GLOBAL Adult Guideline) provides evidence-based medical recommendations to support clinicians in their care of adults with Down syndrome. Also available to download is a family friendly version and checklist intended to support the health of adults with Down syndrome encouraged to be shared with medical professionals.
NTG’s Early Detection Screening Tool - This tool is recommended to be used to capture a baseline of skill level beginning at the age of 35 and preferably done annually, despite whether any changes are being noticed. It is performed by caregivers and/or support staff.
An additional component that is helpful can be capturing the individual on video, sharing what they do in their daily lives, showcase their strengths, likes and interests, in other words capturing the essence of who they are. This can help with direct support staff and medical professionals in getting to know the individual as well as having a tool in understanding of what changes might be seen over time.
NTG- Family Guideline document - The NTG-EDSD is a brief checklist that families or other caregivers can use to record behaviors that they suspect may be changing and want to discuss with a doctor, nurse, or other person.
How is a Person Diagnosed with Alzheimer’s in Down Syndrome and other medical factors to rule out.
Getting Ready for a PET Scan - Printable for preparing for your PET scan.
AGING
Adults with Down syndrome experience “accelerated aging,” meaning that they experience certain conditions and physical features that are common to typically aging adults at an earlier age than the general population. 
Generally, the experience of accelerated aging can be seen medically, physically and functionally. Many family members and caregivers commonly observe that people with Down syndrome appear to “slow down” once they enter their 40s or 50s.
A Guide to Aging with Down Syndrome- Today & Tomorrow
The Connection Between Down Syndrome & Alzheimer’s Disease
Chromosome 21 plays a key role in the relationship between Down syndrome and Alzheimer’s disease as it carries a gene that produces one of the key proteins involved with changes in the brain caused by Alzheimer’s. Additionally, scientists have located several genes on chromosome 21 that are involved in the aging process and that contribute to the increased risk of Alzheimer’s disease. It is this unique property of chromosome 21 that makes the disease a more acute concern for people with Down syndrome than those with other forms of intellectual disability. 
However, Alzheimer’s disease is not necessarily inevitable in people with Down syndrome. While all people with Down syndrome are at risk, many adults with Down syndrome will not manifest the changes of Alzheimer’s disease in their lifetime. Although risk increases with each decade of life, at no point does it come close to reaching 100%. This is why it is especially important to be mindful about others assigning this diagnosis before looking at all other possible causes for why changes are taking place with aging. Estimates show that Alzheimer’s disease affects about 30% of people with Down syndrome in their 50s. By their 60s, this number comes closer to 50%.
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“Something’s Different”; Concepts of Change in Adults with Down Syndrome |
RISK REDUCTION
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RESOURCES ON DOWN SYNDROME & DEMENTIA
- Alzheimer’s Disease and Down Syndrome - NDSS website
- Jenny’s Diary; A resource to support conversations about Dementia with people who have an intellectual disability
- My Thinker’s Not Working - A national strategy for enabling adults with ID affected by Dementia to remain in their community and receive quality supports.
- National Task Group on Intellectual Disabilities and Dementia Practices - A non- profit whose mission is to advocate for services and supports for people with intellectual disabilities who are affected by dementia and for their families.
- Let’s Talk about Dementia - A workbook to be used in different ways for an individual with Down syndrome to better understand dementia.
SUPPORT FOR CAREGIVERS
- Parents/Caregivers of Adults with Symptoms of Dementia - Monthly virtual meeting with Marianne Iversen
- One Caregiver Resource Center - A centralized platform with resources to support caregivers of those with IDD and at risk of or living with dementia symptoms.
- Living with Dementia - A booklet from Down’s Syndrome Scotland for those with dementia for families and caregivers of individuals with Down syndrome. Provides useful tips on making the household environment more dementia friendly.
- Alzheimer’s Disease and Down Syndrome; A Practical Guidebook for Caregivers
- Positive Approach to Care - Teepa Snow’s website with useful tips, webinars, and email sign ups
MENTAL HEALTH
According to the National Down Syndrome Society at least half of all children and adults with Down syndrome will face a major mental health concern during their life, a statistic that is similar to the general US population. The most common mental health concerns in individuals with Down syndrome include anxiety, obsessive-compulsive behaviors, oppositional behaviors, depression, and tic disorder.
- Mental health assessments should include an assessment of physical health to ensure that any physical issues are not affecting mental health in any way.
- Dr. Brian Chicoine from the Adult Down Syndrome Center in Illinois has published an article listing possible physical conditions that can affect mental health.
- A good resource on Mental Health written by Dr. Brian Chicoine and Dennis McGuire, may be found in our library; Mental Health in Adults with Down Syndrome, Second Edition. It is also available in PDF.
MENTAL HEALTH ALLIANCE
The Mental Health Alliance program provides information, trainings, resources and supports by partnering with therapists, therapy centers and training institutes to motivate and better equipe mental health professionals to feel confident in working with individuals with Down syndrome.
Within this program we have created a resource of tools and visual supports as well as a resource list of therapists/therapy centers who either have experience working with individuals with Down syndrome or have expressed an interest in doing so.
The Mental Health Alliance has created an online resource of communication tools and visual supports.
If you would like to learn more about this program, please contact Marianne@dscba.org.
Current Programs Available
THRIVE Sessions
These classes are groups that support key skills for the adult-aged population. We focus on skill building in three main areas: Social/Friendship, Leisure/Recreation and Inter/Independent Living. These very active and fun groups emphasize positive communication and social values, personal awareness and empowerment through vital peer and group relationships, fitness and recreation, and creative movement and the expressive arts. Emphasis is on ability and personal responsibility in a safe and exciting group.
Berkeley Adults
Thursdays: In - Person: 4:00 - 5:30pm
Facilitator(s): Jennifer Cooper, Tamara Zirkle
- Aug 29,
- Sep 5, 12, 19, 26,
- Oct 3, 10, (No Class 10/17) Oct 24, 31,
- Nov 7, 14, 21
These classes are groups that support key skills for the adult-aged population. We focus on skill building in three main areas: Social/Friendship, Leisure/Recreation and Inter/Independent Living. These very active and fun groups emphasize positive communication and social values, personal awareness and empowerment through vital peer and group relationships, fitness and recreation, and creative movement and the expressive arts. Emphasis is on ability and personal responsibility in a safe and exciting group.
Concord Adults
Wednesdays: 4:15pm - 5:45pm
Facilitators: Teresa Jorgensen
These classes are groups that support key skills for the adult-aged population. We focus on skill building in three main areas: Social/Friendship, Leisure/Recreation and Inter/Independent Living. These very active and fun groups emphasize positive communication and social values, personal awareness and empowerment through vital peer and group relationships, fitness and recreation, and creative movement and the expressive arts. Emphasis is on ability and personal responsibility in a safe and exciting group.
Danville (& San Ramon Valley) Adults
Tuesdays: 4:00 p.m. - 5:00 p.m.
Facilitators: Marianne Iversen, Debbie Munoz
Thursdays: 4:00 p.m. - 5:00 p.m.
Facilitators: Marianne Iversen
The goals of the Teen Classes are to improve students’ language development, reading comprehension, confidence and self-expression. The emphasis is on enhancing socialization skills, building friendships and practicing teamwork, cooperation and respect for self and others.
Danville (& San Ramon Valley) Teens & Young Adults
Wednesdays: 4:00 p.m. - 5:30 p.m.
Facilitator: Laura Briggs
Santa Rosa Adults (Summer Session)
Thursdays: 4:00 p.m. - 5:30 p.m.
Facilitator: Lori Rotolo
These classes are groups that support key skills for the adult-aged population. We focus on skill building in three main areas: Social/Friendship, Leisure/Recreation and Inter/Independent Living. These very active and fun groups emphasize positive communication and social values, personal awareness and empowerment through vital peer and group relationships, fitness and recreation, and creative movement and the expressive arts. Emphasis is on ability and personal responsibility in a safe and exciting group.
Rohnert Park Adults
Thursdays: 4:00pm - 5:30pm
Facilitator(s): Lori Rotolo
Co-Facilitator: Cady Zuckerman
Fall 2024 Dates:
- Sep 12, 19, 26,
- Oct 3, 10, 17, 24, (No Class Oct 31,)
- Nov 7, 14, 21, (No class 11/28)
- Dec 5, 12
The goals of the transtioning youth and young adult classes are to improve students’ language development, reading comprehension, confidence and self-expression. The emphasis is on enhancing socialization skills, building friendships and practicing teamwork, cooperation and respect for self and others.
Virtual Teen & Young Adults
Wednesdays: 4:00 - 5:00 pm
Facilitator: Christina Lewis
These classes are groups that support key skills for the adult-aged population. We focus on skill building in three main areas: Social/Friendship, Leisure/Recreation and Inter/Independent Living. These very active and fun groups emphasize positive communication and social values, personal awareness and empowerment through vital peer and group relationships, fitness and recreation, and creative movement and the expressive arts. Emphasis is on ability and personal responsibility in a safe and exciting group.
Virtual Adults
Tuesdays: 4:00pm - 5:00pm
Facilitators: Christina Lewis
Connection Groups
Early Connections offers a friendly and supportive environment for parents and their babies (ages 0–3). We share helpful information to support your baby’s development. Some months we invite guest speakers and focus on a specific topic.
This group meets two times a month: one Wednesday evening and one Saturday morning.
Facilitator: Cathleen Small, Director of New Family Services
- Location: DSCBA, 101-J Town and Country Dr, Danville
- Saturdays 9:30am–11:00am
Early Connections Play Dates
- Jul 15 - 10 am - 12 pm
- Mia's Dream Come True All-Abilities Playground, Tennyson Park, 28377 Huntwood Ave, Hayward, CA 94544
- Aug 5 - 10 am - 12 pm
- Inclusive Playground at Lucchesi Park, 320 N McDowell Blvd, Petaluma, CA 94954
- Sep 9 - 10 am - 12 pm
- Magical Bridge Playground, Red Morton Park, 938 Valota Rd, Redwood City, CA 94061
Mom’s Coffee Chat
Moms of children of all ages are welcomed to join in on an opportunity to get together in the comfort of your own home with fellow moms and share in the joys and challenges of parenting.
2024 Meeting Time/Dates:
- Facilitator: Laura Gordon, LGordon@dscba.org
- Wednesday, 11am-12pm PST
- Location: Via Zoom
- Jan 17, Apr 17, Jul 17, Oct 16
Please email Programs@dscba.org if you have any questions.
Dad’s Night
Dads of children of all ages are welcomed to join in on an opportunity to get to meet other dads. This is a perfect way to get together in the comfort of your own home with other dads and share in the joys and challenges of parenting.
2024 Meeting Time/Dates:
- Facilitator: Vivek Mathrani
- Sunday, 7:30 - 9 p.m.
- Location: Via Zoom
- Jan 28, Mar 24, May 26, Jul 28, Sep 22, Nov 24
Please email Programs@dscba.org if you have any questions.
If you are caring for someone with DS who exhibits symptoms of Alzheimer’s disease or a related dementia please join us in this monthly virtual meeting.
2024 Meeting Times/Dates:
- Facilitators: Marianne Iversen
- 3rd Thursday of the Month: 6:00 p.m. - 7:00 p.m.
- Location: Virtual
- Jan 18, Feb 15, Mar 21, Apr 18, May 16, Jun 20, Jul 18, Aug 15, Sep 12, Oct 17, Nov 21, Dec 19
Email: marianne@dscba.org for more information
Grandparents of children with Down syndrome are welcomed and encouraged to join this monthly group. This is an opportunity to exchange information, share common experiences, and be encouraged by other grandparents with similar issues and concerns.
2024 Meeting Time/Dates:
- Facilitator: Michelle Slape, Michelle@dscba.org
- Location: Hybrid - Zoom / DSCBA, 101-J Town and Country Dr, Danville
- 10:00am–11:30am, Third Wednesday of the month
- Jan 24, Feb 21, Mar 20, Apr 17*, May 15, Jul 17, Aug 21*, Sep 18, Oct 16, Nov 20, Dec 18*
- In - person meetings in Danville office are marked with "*"
- All other meetings dates by Zoom.
Sibling Support
Brothers and sisters of those with Down syndrome tend to be compassionate, understanding, wonderful people. But we also know that being the brother or sister of someone with Down syndrome can have its tough times, too!
If you would like more information about resources please contact info@dscba.org
Additional Resources
Organizations:
- Sibling Leadership Network: www.siblingleadership.org
- Provides siblings of individuals with disabilities tools to advocate for their sibling and for issues important to their family.
- Sibling Support Project: www.siblingsupport.org
- A national network to provide support to siblings of people with disabilities. Sibling support workshops (SIBSHOPS) are available throughout the country.
- National Down Syndrome Congress for ADULT SIBLINGS: www.ndsccenter.org/adult-siblings
- National Down Syndrome Society: Caring For Your Family
Books about Siblings and Down syndrome*:
- Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters
- Brian Skotko and Susan Levine (Woodbine House, 2009). Uses a question and answer format to address questions from teens who have a sibling with Down syndrome.
- 47 Strings: Tessa's Special Code
- Carey, Becky (Little Creek Press, 2012). A big brother learns about his little sister’s special code. A book to help explain Down syndrome to young children.
- Sibshops-
- Meyer, Don and Patricia Vadasy, revised edition (Brookes Publishing, 2008). A guide to organizing workshops for siblings according to the SibShop model.
- Special Brothers and Sisters-
- Hames, Annette and Monica McCaffrey, editors (Jessica Kinsgley, 2005). Accounts from real-life siblings of children with special needs.
- Special Siblings-
- McHugh, Mary, Revised Edition (Brookes Publishing, 2003). Interviews with more than a 100 siblings and experts.
- The Sibling Slam Book-
- Meyer, Don, editor (Woodbine House, 2005). Eighty teenagers talk about what it is like to have a brother or sister with special needs.
- The Sibling Survival Guide-Indispensable Information for Brothers and Sisters of Adults with Disabilities
- Meyer, Don and Emily Holl, editors (Woodbine House, 2014). Advice for siblings on topics ranging from communication to medical and legal issues.
- Views from Our Shoes
- Meyer, Don, editor (Woodbine House, 1997). Essays from children who have a sibling with a disability.
- We'll Paint the Octopus Red-
- Stephanie Stuve-Bodeen, (Woodbine House, 1998). A little girl prepares to welcome her new baby brother with Down syndrome. Ages 3-7.
- Your Loved One is Having a Baby with Down Syndrome-
- When you learn that someone you love is expecting a baby with Down syndrome, you naturally have concerns, and wonder what to say and do. This book will help you through your initial, normal reactions of sadness, shock, and worry, and give you the information and perspective you need to welcome a baby with Down syndrome.
*Check to see if a copy is available to borrow from our Lending Library
Email the Lending Library
We have several private Facebook Groups to serve the needs of our diverse membership. Please click through the links to request to join. Our main Facebook page is located here.
- Young Connections at DSCBA
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A DSCBA Connection group for parents of young and elementary-aged children. This private group provides a place to share and support one another in a respectful environment.
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- DSCBA Homeschoolers
- This private group, a part of the Down Syndrome Connection of the Bay Area (DSCBA), is open to parents, family members and caregivers who homeschool a child or adult having Down syndrome. This group also welcomes parents or persons in the Bay Area seeking more information about homeschooling their loved one with Down syndrome. This is a place for families to ask questions and share advice, resources, and experiences about the unique challenges, added stress, struggles and successes of homeschooling. The focus is on helping each other to find possible solutions, along with sharing humorous stories, in a safe, non-judgmental environment.
- DSCBA Conexión de Síndrome Down del Área de la Bahía
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Down Syndrome Connection es una organización apasionada y dedicada a fomentar el potencial ilimitado en niños y adultos con síndrome de Down en todo el Área de la Bahía de San Francisco desde 1998.Este es un lugar para que las familias y cualquier persona con un ser querido con el síndrome de Down puedan hacer preguntas, compartir consejos, recursos y experiencias sobre los desafíos únicos, el estrés adicional, los retos y los éxitos. La atención se centra en ayudarse mutuamente a encontrar posibles soluciones, junto con historias divertidas, en un entorno seguro y sin prejuicios.
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- DSCBA Dual Diagnosis Support
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This private group, a part of the Down Syndrome Connection of the Bay Area (DSCBA), is open to parents, family members, caregivers, and others working with a child or adult having Down syndrome and autism in the Bay Area. This group also welcomes parents or persons in the Bay Area seeking more information about a dual diagnosis of Down syndrome and autism.This is a place for families, and anyone touched by a person having dual diagnosis, to ask questions, share advice, resources, and experiences about the unique challenges, added stress, struggles and successes. The focus is on helping each other to find possible solutions, along with humorous stories, in a safe, non-judgmental environment.
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- DSCBA-Parents/Caregivers of Teens and Adults with Down Syndrome
- A DSCBA Connection group for parents/caregivers of Teens and Adults with Down syndrome. This is a private group that is meant to give an opportunity to share and support one another in a respectful environment.
Music Therapy Sessions
Virtual Music Therapy
- Registration is required 24 hrs in advance to ensure attendance in all Virtual Classes.
- Zoom Links are sent by email, 24 hrs (or more) before each Virtual Class.
TO REGISTER: Please click on the session & date you wish to attend.
2024 Schedule
Our Mission
To empower, inspire and support people with Down Syndrome, their families and the community that serves them, while fostering awareness and acceptance in all areas of life.
