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Spurwink Partners with MaineHealth on Federal Grant to Support Adults with Intellectual and Development Disabilities Facing Dementia

By October 24, 2023Blog

Work is underway in Spurwink’s second year of partnership with MaineHealth and the Southern Maine Area Agency on Aging (SMAAA) on an Alzheimer’s Disease Programs Initiative (ADPI) funded by the Administration for Community Living grant# 90ADPI0097-01-00 ending 8/31/25.

The collaboration is expanding dementia-informed service delivery using new evidence-based and evidence-informed programs to support people with Alzheimer’s Disease and Related Dementias (ADRD) and their caregivers, including those with intellectual and developmental disabilities (IDD).

In the grant’s first year, Spurwink worked to increase knowledge among healthcare and community-based service providers about identifying and supporting those with ADRD and IDD by training and certifying two Spurwink staff members in Teepa Snow’s Positive Approach to Care (PAC). The Teepa Snow PAC training teaches care teams how to better understand the behaviors that may arise and how to work more compassionately and effectively with people living with ADRD.

In years 2 and 3 of the grant Spurwink will train additional staff and community members to provide compassion and evidence-based care to individuals living with IDD and Dementia, with goals to train 204 Direct Service Professionals (DSPs), 17 House Managers, 20 Shared Living Providers**, and offer 5 free classes for up to 125 family caregivers and community members.

The first year of training has been an incredibly positive experience for Spurwink staff who have shared their excitement for the content’s alignment with Spurwink’s mission and values. As Karen Lynn Szalajeski, Associate Director of Adult Programs, shared, the PAC training has been a reminder that in our work “we are not here to fix people; we are here to honor where they are.”

Spurwink offers various programs and services through the state of Maine to serve individuals with IDD, including 22 congregate homes, 2 intermediate care facilities (1 group home and 1 nursing home), 2 adult private nonmedical institutions, and a variety of outpatient mental health programs. All these programs have clients who are at high risk for Alzheimer’s Disease and Related Dementias (ADRD).

Early identification of the signs and symptoms of cognitive impairment and dementia is important for all but can be especially challenging for persons with intellectual and developmental disabilities (IDD). Dementia appears in about 6% of the population of adults with intellectual disability over age 60, and 12% of the population over age 80. Among adults with Down syndrome, estimates show that Alzheimer’s disease affects about 30% of people in their 50s. By their 60s, this number comes closer to 50%. Currently, there are limited resources for identifying dementia in the presence of IDD and a lack of evidence about what interventions work with the IDD population. The project is working to help build that evidence base by focusing on skills for caregivers to identify and support people with IDD who have dementia*.

*Information taken from “MaineHealth Alzheimer’s Disease Partnership: Expanding to Meet Community Needs” ADPI- States and Community Grants HHS-2022-ACL-AOA-ADPI-0059 Summary and Abstract.

**Shared Living Providers share their home and help an adult with a developmental disability or autism create a meaningful and connected life. Shared Living Providers receive Spurwink matching services, support, training, respite, and a generous stipend. Learn more: