PCAD III Project: Families Caring for People with Down Syndrome and Dementia



This project, housed at the University of Maine and funded by the Rehabilitation Research and Training Center on Aging with Developmental Disabilities, University of Illinois at Chicago, is working with families who are caring at home for adults with Down syndrome, some of whom are affected by Alzheimer's disease.

The current phase of the project is focused on examining the helpfulness of support groups for aiding parents and other natural carers who are responsible for supporting-at-home adults with Down syndrome and other intellectual disabilities who are affected by Alzheimer’s disease (and related dementias). We will be looking at the differences between using a support group model as constructed by McCallion and Janicki in an earlier study with grandparents caring for children with developmental disabilities and a ‘learning-at-home’ model of providing reading and media materials for home study.

We are currently looking for agencies which may wish to participate. If you wish to participate, please contact Kate DeHaven, project coordinator at 1-207-581-3586 or at kate_dehaven@umit.maine.edu. You can also fax us at 1-207-262-7921 (ATTN: PCAD).

We will contact you about your participation. You can contact us whether you are a family member wishing to participate or an agency worker interested in having your agency participate.

PCAD Project Staff
Dr. Matthew Janicki, Project Director
Ms. Kate DeHaven, Project Coordinator
Ms. Anna Zendell, Project Associate

This project was made possible through a grant from the National Institute on Disability Rehabilitation Research and the Rehabilitation Research and Training Center on Aging with Developmental Disabilities, University of Illinois at Chicago grant number H133B031134.

Please click here to download a copy of the Consent Form (pdf document) which can be printed out on your computer.

Please click here to download a copy of the IRB Approval Form (pdf document) which can be printed out on your computer.

Please click here to download a copy of the Agency Information Form (pdf document) which can be printed out on your computer.

Please click here to download a copy of the Training Protocols (pdf document) which can be printed out on your computer.