Wichita Project
Observational Study
What is the Wichita Project?
The Wichita Project is a longitudinal observational study of one grouping of specialty group homes designed to provide long-term community based care and supports for adults with intellectual disability affected by dementia. The homes were purpose built a cluster arrangement and sited within a residential neighborhood in Wichita, Kansas. There were three homes, each providing a place to live for five adults.
Begun in 2011, the Wichita Project continues through today. Fifteen adults with dementia made up the first group, along with 15 adults without dementia living within the community (included for comparison purposes).
The study was undertaken to observe the long-term gains from such group home living and to be able to describe the effects of dementia on the adults at the homes.
Since 2010, 14 of the original residents - termed the 'legacy residents' - have died and 21 other adults with dementia have joined the study. All told, 36 adults have profited from living in the homes and their stories are included in this study.
See presentation slides or to read a summary of a presentation given by the agency's personnel involved in the project about their experience with the group homes, click on images.
Background
The Wichita Project is a longitudinal observational study of a grouping of specialty group homes designed to provide long-term community based care and supports for adults with intellectual disability affected by dementia. The Project began in 2011 and continues through today. The study was undertaken to observe the long-term gains from such group home living and to be able to describe the effects of dementia on the adults at the homes.
The Project encompasses a study of 15 adults who first began living in three newly purpose-built group homes in mid-2010. Another 15 adults living in other community settings, matched for age and other factors, were included as the 'controls'. Information on the 30 adults was first collected in 2011 and then again on a yearly and bi-yearly basis.
The homes were set-up in a cluster arrangement in a residential neighborhood in Wichita, Kansas. There were three homes, each providing a place to live for five adults.
Since first entry into the homes in 2010, 14 of the original residents - termed the 'legacy residents' - have died and eight other adults with dementia have joined the study. All told, 36 adults have profited from living in the homes and their stories are included in this study.
The study also includes 15 other adults who were chosen to act as 'controls'. They did not have dementia in 2011 and were matched in age and other factors with the legacy residents. Since 2011, ten of these adults have died and three were diagnosed with dementia. The remaining five adults continue to live in regular group homes. Six of the adults who died were admitted to a skilled nursing facility prior to their death.
The project was undertaken in five phases:
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Phase 1 - 2011-2013 (identified as T1, T2, T3, T4 data collections)
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Phase 2 - 2014-2018 (identified as T5, T6, T7, T8, T9 data collections)
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Phase 3 - 2019-2020 (identified as T10 data collection)
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Phase 4 - 2020-2025 (identified as T11, T12, and additional data collections)
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Phase 5 - 2026- (identified as T13)
Key Findings
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High mortality characterized the legacy dementia cohort: 14 of the original 15 residents (93.3%) died during the 15-year observation period, compared with 5 of 15 (33.3%) comparison-group adults.
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Mortality began relatively soon after admission: deaths among legacy residents began approximately two years after entry, with a mean interval from admission to death of 5.4 years.
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Legacy residents died younger than comparison-group adults: mean age at death was 67.5 years among legacy residents compared with 71.4 years among controls.
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Down syndrome was associated with substantially younger ages: residents with Down syndrome entered at a mean age of 53.5 years, compared with 66.2 years for residents with other intellectual disabilities; mean age at death was also considerably younger for residents with Down syndrome (53.5 years) than for those with other ID (71.5 years).
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Sex differences in mortality were modest: mean age at death was 66.3 years for males and 69.5 years for females.
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Comorbidity patterns differed between the dementia and comparison cohorts: the number of recorded comorbidities declined over time among the legacy and broader ID cohorts as residents died, whereas the comparison group showed an upward trend in comorbidity with increasing age. The difference in comorbidity burden between legacy and comparison residents was statistically significant.
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Residents experienced substantial co-occurring health conditions: prominent comorbidities included incontinence (71.4%), depression (57.1%), and back pain, constipation, foot pain, and heartburn (42.9% each), with arthritis, thyroid disorders, hypertension, hypercholesterolemia, and sensory impairment also common.
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Admissions clustered into three distinct age groups: dementia-related admissions showed a tri-modal pattern centered at approximately age 50, age 57, and age 67, suggesting that admission was not concentrated within a single age range.
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Length of stay was substantial and relatively consistent across the three homes: during the first 10 years, average LOS ranged from approximately 3.8 to 4.7 years by home, with an overall LOS of approximately 4.9 years (58.5 months).
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Care demands differed among otherwise similar homes: staff-care patterns varied according to the evolving needs of residents, with substantial staff time devoted to toileting assistance, eating and drinking support, and behavioral management.
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The homes progressively developed different care profiles: variation in staff-care time across the three residences suggests that resident composition and dementia-related needs led to functional differentiation in caregiving demands despite the homes' similar initial design.
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Taken together, the findings demonstrate the dynamic nature of dementia-capable group-home care: mortality, new admissions, changing comorbidities, and increasing or differing support needs continually altered resident composition and staffing demands, underscoring the need for residential programs to anticipate turnover and adapt care practices over time.
Acknowledgements
This Project was undertaken under the auspice of the Department of Disability and Human Development at the University of Illinois at Chicago and was originally funded by a series of grants from National Institute on Disability and Rehabilitation Research, and the National Institute on Disability, Independent Living, and Rehabilitation Research, now a part of the US Administration on Community Living. The project is currently supported by a grant from the Centers for Disease Control and Prevention (CDC), National Center for Chronic Disease Prevention and Health Promotion, the Healthy Brain Initiative Award #1 NU58DP006782-01-00, to the University of Illinois at Chicago. The contents are solely the responsibility of the author and do not represent the official views of ACL or the CDC.
The contributions of Profs Philip McCallion and Lawrence Force during Phase 1 of the project are warmly acknowledged. Work under Phase 4 is supported by a grant to the University of Illinois at Chicago from the Centers for Disease Control and Prevention.
Appreciation is extended to Kris Macy and the Starkey, Inc. organization for their contributions and participation in this project.
Study reports
This listing provides reports and information gleaned from the study and is updated periodically.
See summary of first year (T1) study information on the legacy residents (Alz Europe - 2011)
See summary of Phase 1 (T1-T4) study information on the legacy residents and controls (NTG - 2015)
See summary of Phase 1 and Phase 2 (up to T5) on all study subjects (GSA - 2015)
See summary of Phases 1 & 2 study with focus on Down syndrome (ISTAART - DS PIA - 2018)
See poster summarizing key finds over 2011-2019 (GSA - 2018)
See summary of Phases 1 & 2 study over time (ANCOR - 2019)
See poster 'Community-based Housing and NPI-care Practices for Adults with Intellectual Disability
and Dementia' presented virtually at AAIC Conference (July 2020).
See 'Planning Dementia-Capable Community-based Housing for Adults with Intellectual Disability' -
presentation given virtually at Alzheimer Europe Conference (October 2020)
See 'Community-based housing and NPI-care practices for adults with intellectual disability and dementia.' - Poster presentation at AAIC 2020 Conference, July 30, 2020. Published in Alzheimer's & Dementia, 16(S8).
See 'Health Condition Variations among Adults with Intellectual Disability and Dementia' - poster
and aural summary given virtually at the AAIC's Conference on Addressing Health Disparities Related to Alzheimer's and all Dementias (June 2021)
See 'Applying findings from a longitudinal study of dementia care group homes to the development of community dementia support services for adults with intellectual disability' - webinar given on 8 February 2022 under the auspice of the HBI Health Matters Program at the University of Illinois at Chicago.
See "Housing, Aging, & Dementia" - Presentation at Disability Leadership Network Housing Summit at Noah Homes, San Diego, California, 7 September 2023.
See 'Long-range planning for group home dementia care for adults with intellectual disability' -- Presentation at the 2025 annual conference of the Gerontological Society of America, Boston, Massachusetts, 15 November 2025.
See 'From admission to end of life: longitudinal lessons from dementia-specialized group homes for adults with intellectual disability' -- Poster presentation at the 2026 AAIC Conference (London, UK), July 2026
See Planning Dementia-Capable Group Homes for Adults with Intellectual Disability: Insights from a 15-Year Longitudinal Study. Article published in American Journal of Alzheimer's Disease and Other Dementias.
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Read the summative article on the key findings and applications to planning a dementia care group home
Planning Dementia-Capable Group Homes for Adults with Intellectual Disability: Insights from a 15-Year Longitudinal Study
American Journal of Alzheimer's Disease & Other Dementias ttps://doi.org/10.1177/15333175261483975