Caring for a Family Member with ID and Dementia

Caring for a loved one who has Down syndrome and Alzheimer's or another dementia

can be one of the greatest challenges we face.

We do not have to do it alone!

Advocating for the Needs of Families

Family Advocacy Workgroup

The NTG is committed to family caregivers, as well as direct service professionals, who support individuals with intellectual disability and dementia. We recognize that many family members provide direct, day-to-day care to their loved one, while others are involved indirectly. No matter how you provide care, the work we do is in support of all family caregivers.

The Family Advocacy Workgroup:

Provides written and in-person public comments to the National Alzheimer’s Project Act Advisory Council and the RAISE Family Caregiver Advisory Council
Facilitates the first monthly national online support group for family caregivers
Assists individuals and organizations to develop local in-person and online support groups
Disseminates a quarterly Family Caregiver Newsletter worldwide
Provides technical assistance to recipients of federal grants and research projects
Co-authors publications related to intellectual disability and dementia
Participates in a Facebook group for caregivers and professionals supporting individuals with Down syndrome and Alzheimer’s disease
Collaborates with NDSS on its Adult Summits and areas of common interest

Co-chairs of the Family Advocacy Workgroup are Mary Hogan and Jadene Ransdell.

Online Family

Support Group

1st Thursday of Every Month

There are many families who are accompanying their loved one with Down syndrome or other Intellectual Disability on the Alzheimer's (Dementia) journey.

It can feel like a lonely path, but it doesn't have to. Join other family caregivers in regularly scheduled online meetings to discuss your concerns, to share your fears, your joys, and to learn.

For more information about the online support group or how to join the monthly meetings please email Jadene Ransdell or Mary Hogan.

Caregiver

News and articles of special interest to family caregivers.

Our caregiver newsletter is published several times a year and contains articles and resources of particular interest to family caregivers.

Articles cover a range of topics and issues that families need up-to-date information on such as research, managing care, resources, and much more.

To subscribe to our newsletter please contact Jadene Ransdell.

To view and download copies of past newsletters please click here.

Down Syndrome and Alzheimer's/Down Syndrome Regression Support

Private Facebook Group

This is a support group for families of people who have a primary diagnosis of Down syndrome with an additional diagnosis of Alzheimer's or Down Syndrome Regression.

This group was created to provide a safe environment for families and those who care for, support and love people with Down syndrome who are experiencing a loss of skills, significant difficult behavior, or other health issues as a result of Alzheimer's or Down Syndrome Regression.

To be considered for membership in this group, anyone requesting membership must thoroughly answer the three questions listed. The administrators of the group reserve the right to decline membership to anyone who has not answered the questions with enough information to ensure the group is a good fit.

Click here to join our Facebook group.