Launched in 2011
What is the Wichita Project?
Wichita Project: Dementia-Capable Group Homes for Adults with Intellectual Disability
The Wichita Project is a naturalistic study examining the development and long-term operation of three purpose-built dementia-capable group homes in Wichita, Kansas, designed to support adults with intellectual disability (ID) who developed Alzheimer’s disease or other dementias as they aged. The homes were constructed and opened for occupancy in 2010 by Starkey, Inc., a local service provider. Beginning in 2011, the project evolved into a longitudinal study exploring how community-based group homes—originally designed for lifelong developmental support—could be adapted to meet the progressive care needs associated with dementia. Known as the Starkey “Lighthouse” homes, these residences provided a unique opportunity to observe over time both the operational trajectory of dementia-capable group homes and the changing characteristics of the residents who initially occupied them and those admitted in subsequent years.
Purpose and Model:
The project was conducted as a naturalistic, observational study examining the long-term residential trajectories of adults with intellectual disability living in small, community-based dementia care group homes. It was based on the premise that such homes could support individuals with ID and dementia throughout the progression of the disease, enabling residents to remain in familiar community settings rather than transitioning to nursing homes or institutional care. The study did not involve a formal intervention; instead, it documented the natural evolution of the homes, their residents, and related operational factors as the program developed under the direction of the host agency. At the outset, each residence was designed to accommodate five residents, creating a small-scale, homelike environment that supported individualized care while maintaining opportunities for social interaction and continuity of relationships.
Design and Operational Features:
The homes incorporated dementia-capable environmental and care principles, including:
Single-level layouts and accessible design features to accommodate mobility changes.
Private bedrooms with familiar household living spaces such as kitchens, dining rooms, and activity areas.
Structured daily routines and individualized engagement activities.
Staffing models adjusted to residents’ stage of dementia, with increasing support as cognitive and functional abilities declined.
Coordinated clinical oversight to monitor health changes, manage comorbidities, and support palliative care planning.
Over time, the homes functioned as a clustered residential system, enabling residents to remain within the same program even as their care needs increased. In practice, this led to a natural differentiation among the homes, with one increasingly supporting residents with later-stage dementia, while the other two housed individuals in earlier or mid-stages who continued to participate in day programs and community activities. Together, the homes evolved into an organic residential community, with interactions among residents across the homes and connections to shared program resources and community supports.
Resident Trajectories and Turnover
Longitudinal observations over approximately 15 years showed that residents with dementia experienced progressive cognitive decline, increasing multimorbidity, and rising dependency in daily activities. As residents died, new individuals with dementia were admitted, producing a cycle of admission, progression, and end-of-life care while maintaining full occupancy across the homes. Length of stay varied depending on stage at admission, with earlier entrants—often adults with Down syndrome—remaining longer than those admitted later in the disease course.
Significance
The Wichita Project provides one of the longest observational experiences of community-based dementia housing for adults with intellectual disability. To date, it demonstrated that:
Small, specialized group homes can support individuals with ID and dementia throughout disease progression.
Dementia-capable residential care requires adaptive staffing, coordinated medical oversight, and flexible operational planning.
Predictable patterns of health decline, mortality, and resident turnover should be incorporated into administrative planning.
Implications
The project has informed broader discussions on dementia-capable housing models for adults with intellectual and developmental disabilities, highlighting the importance of:
Purpose-built residential design,
Stage-responsive staffing and care practices,
Early referral and admission pathways, and
Integrated health and palliative care supports within community settings.
Overall, the Wichita Project illustrated how community-based group homes can function as sustainable, person-centered alternatives to institutional dementia care for adults with intellectual disability.
Presentation on the Lighthouse Homes by Kris Macy of Starkey, Inc. at a webinar organized by the NTG and the GWEPS at the University of Rhode Island and Virginia Commonwealth University
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 followed the experiences of adults with intellectual disability living in three purpose-built dementia-capable group homes that opened in Wichita, Kansas, in mid-2010. The initial cohort consisted of 15 residents—referred to as the legacy residents—who were among the first to occupy the homes. To provide a comparison group, 15 adults living in other community settings and matched for age and other characteristics were also included in the study. Data on these 30 individuals were first collected in 2011 and subsequently gathered annually or biennially through 2025.
The three homes were situated in a clustered arrangement on a 0.3-acre site in a residential neighborhood, with each residence accommodating five adults. As residents in the original cohort died or left the program, additional individuals with dementia were admitted to maintain occupancy. Over the course of the study, 21 replacement residents joined the homes, bringing the total number of adults with dementia observed in the residential program to 36. Replacement residents began residing in the homes by year 3 of the study.
Among the legacy cohort, 14 of the original residents had died by the end of the observation period. Replacement residents entered the homes at an average age of 56.6 years and remained for an average of 4.3 years; approximately 57% died within three years of admission. In total, 36 adults with dementia lived in the homes during the study period.
The comparison group included 15 adults without dementia at baseline in 2011. Over time, 10 of these individuals died and three were subsequently diagnosed with dementia. The remaining five continue to reside in community-based group homes, with two of the deceased having been admitted to skilled nursing facilities prior to death.
The project was undertaken in four phases:
Phase 1 - 2011-2013 (identified as T1, T2, T3, T4 data collections)
Phase 2 - 2014-2018 (identified as T5, T6, T7, T8, T9 data collections)
Phase 3 - 2019-2020 (identified as T10 data collection)
Phase 4 - 2020-2025 (identified as T11, T12, and additional data collections)
Phase 5 - 2026 - post follow-up
Some Key Findings
Mortality
Legacy Dementia Group
14 of the 15 (93.3%) original entry [Legacy ID] adults died over 15 years
Average age at death was 68.2 yrs ID: 71.5; Down syndrome: 60.8 Males: 66.3; females: 69.5
Average age at entry: 59.1 ID: 66.2; DS: 53.5
Mean years from entry to death: 8.0 yrs
Deaths began 2 years following admission
Comparison Group
Ten of the 15 (66.7%) of comparison group adults died over the same period
Average age of death for the comparison (CG) group adults was 71.3 yrs
Comorbidities
Legacy ID and All-ID over time had a greater drop off of comorbidities due to deaths. CGs showed an upward trend in the number of comorbidities with increasing age. There was a statistically significant difference in the number of comorbidities between the legacy and comparison adults.
Major comorbidities included: incontinence (71.4%); depression (57.1%); back pain, constipation, foot pain, & heartburn (42.9%); arthritis & thyroid disorder (37.5%); high cholesterol & high blood pressure (28.6%); impaired vision or impaired vision (28.6%).
Admission age clusters
Admissions based on dementia and age showed a tri-modal pattern Admit Age Group #1 entry: ± age 50 [X=50.5] [range: 49-53] Admit Age Group #2 entry: ± age 57 [X=57.1] [range: 56-59] Admit Age Group #3 entry: ± age 67 [X=66.8] [range: 64-70]
Outliers were either much older or much younger
Length of Stay (LOS) patterns by home
Average LOS over the first 10 years for each home was GH1: 49.0 months (4.0 years) GH2: 45.6 months (3.8 years) GH3: 56.7 months (4.7 years)
Overall LOS for all was 4.9 years (58.5 months)
Staff time care patterns by home
Staff care time patterns varied by homes as well as the caregiving focus.
Most time was spent on aid with toileting (GH1/GH3), food(eating/drinking) (GH1/GH2), and with behavior management (GH2).
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 its contributions and participation in this project.
Further information on study results will be forthcoming.
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 oral 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.
Further information on study results will be forthcoming.
