A New Way to Age in Place: Dementia-Capable Group Homes for Adults with an Intellectual Disability
Group homes
By Matthew P. Janicki, Ph.D.
As people with intellectual disability live longer, they are increasingly affected by age-related conditions once uncommon in this population—including all-cause dementias. This shift has created an urgent need for care models that go beyond default older-age skilled nursing institutional admissions, which often lack the familiarity, continuity, and specialized support necessary for individuals with lifelong cognitive disabilities.
In response, agencies are turning toward small, dementia-capable group homes as a person-centered and financially sustainable alternative. These homes—typically five-bed residences located in regular neighborhoods—are specifically designed for adults with intellectual disability and dementia. Their aim: to provide care in familiar, home-like environments while accommodating the progressive nature of cognitive decline. Features include tailored routines, adapted physical environments, and trained staff who understand both dementia and intellectual disability care.
A recently completed 14-year longitudinal study, known as the Wichita Project, offers compelling evidence that this model works. Conducted by a major service provider in the Midwestern U.S., the study tracked the care and outcomes of 34 adults with ID and confirmed all-cause dementia living in three purpose-built group homes in a residential neighborhood. These residents were compared to 15 age-matched peers with ID but no dementia, who lived in standard residential settings.
The study began in 2011 with a “legacy” cohort of 15 individuals, selected from the agency’s broader service population based on clinical signs of advancing dementia. These individuals—9 women and 6 men—were placed in newly opened group homes based on their stage of dementia and functional needs. About 27% had Down syndrome. Over the course of the study, 14 of the original 15 legacy residents died, beginning in the third year of the project. The average post-admission length of stay for this group was just under four years, and average survival post-diagnosis was nine years. Only one of the “legacy” residents was still alive as of January 2025.
To maintain full occupancy across the three homes, the agency implemented a phased replacement strategy beginning in year three. Twenty new residents were admitted over the remainder of the 14-year period, forming the “replacement cohort.” This group included 13 women and 7 men, with a mean age at admission of 61.9 years. About 35% had Down syndrome. On average, replacement residents remained in the program for 3.9 years. Seven of these individuals also died during the study, with an average time from admission to death of 4.3 years.
Interestingly, the study identified three key age clusters for admission—around 50.5, 57.0, and 66.5 years. Those admitted at younger ages tended to live longer and receive more sustained care. This supports the conclusion that early identification and placement into dementia-capable homes can support continuity of care and potentially extend quality of life.
Key Findings
In-Place Progression Model Works: Over time, the three homes naturally differentiated—one evolved to support late-stage dementia care, while the others focused on early and mid-stage needs. This "in-place progression" reduced the need for admission referrals to institutions and allowed for more seamless transitions as residents' conditions advanced.
Earlier Admission Matters: Individuals admitted at younger ages tended to live longer and receive care for a greater duration. This suggests that timely placement supports continuity and reduces crisis-driven moves.
Comorbidities Drive Care Needs: Adults with dementia had significantly higher rates of chronic health conditions than controls. On average, comorbidities rose from five at admission to over 12 by end of life, underscoring the need for robust health surveillance and integrated medical support.
Survival and Quality of Life: Despite elevated health risks, the average survival post-dementia diagnosis was nine years—comparable to general population estimates. Quality of life, measured using standardized tools, remained on par with non-dementia peers, even as care needs increased.
Staffing Flexibility Is Critical: Direct care time nearly doubled in late-stage homes, peaking at over eight hours of hands-on support per day per resident. Homes adjusted staffing levels based on resident acuity, and staff received targeted training in dementia care, communication, and behavioral management.
Caregiver Burden Depends on Preparation: Interestingly, caregivers in standard group homes reported higher stress levels than those in dementia-capable group homes, despite lower care intensity. This highlights the importance of equipping all intellectual disability services with training and resources for recognizing and managing aging-related changes – particularly neurodegenerative conditions.
“The Wichita Project confirms that community-based, dementia-capable group homes can provide high-quality, end-to-end care for adults with intellectual disabilities across all stages of dementia. ”
Implications for the Field
The Wichita Project confirms that community-based, dementia-capable group homes can provide high-quality, end-to-end care for adults with intellectual disabilities across all stages of dementia. These findings are especially relevant to policy efforts focused on deinstitutionalization, aging in place, and disability-inclusive dementia strategies. The model is adaptable, sustainable, and—most importantly—centered on preserving dignity and autonomy.
However, success requires investments in direct support staffing, health monitoring, flexible design, and ongoing training. For agencies operating multiple homes, allowing each to evolve based on resident needs may offer a scalable way to meet growing care demands without compromising quality.
As the population of older adults with ID continues to grow, the Wichita Project offers a blueprint for how we can support them—not just longer, but better.
About the Author
Dr. Matthew P. Janicki is an associate research professor at the University of Illinois Chicago and the Co-President of the Board for the National Task Group on Intellectual Disabilities and Dementia Practices. Previously, he was the Director for Aging Services at the New York State Office for People with Developmental Disabilities.
Acknowledgement: With sincere appreciation to Kris Macy, Chief Operating Officer at Starkey, Inc. in Wichita, Kansas, for her thoughtful oversight of the information shared and her longstanding dedication to the success of this project