What is the Wichita Project?

Summary

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, nine of the original residents - termed the 'legacy residents' - have died and eight other adults with dementia have joined the study. All told, 23 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, three of these adults have died and one was diagnosed with dementia. The remaining 12 adults continue to live in regular group homes or in their own apartments.  Two of the adults who died were admitted to a skilled nursing facility prior to their deaths.

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 additional data collections)

Some Key Findings

Mortality 

      Nine of the 15 (60%) original entry [Legacy ID] adults died over 9 years

  •  Average age at death was 65.2 yrs

    • ID: 71.5; Down syndrome: 58.8

    • Males: 66.6; females: 65.0

  •  Average age at entry: 59.1

    • ID: 66.2; DS: 53.5

  •  Mean years from entry to death: 5.4yrs

  •  Deaths began 2 years following admission

  • Three of the 15 (20%) control group adults died over the same period

  •  Average age of death for the control group adults (COs) was 78.5 yrs

Comorbidities

  • Legacy ID and All-ID over time had a greater drop off of comorbidities due to deaths. COs 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 control 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 9 years for each home was

    •  GH1: 49.0 months (4.0 yrs)

    •  GH2: 45.6 months (3.8 yrs)

    •  GH3: 56.7 months (4.7 yrs) 

  •  Overall LOS for all was 49.4 months (4.12 yr)

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 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 the Starkey, Inc. organization for its contributions and participation in this project.

Study reports

 

This site provides information gleaned from the study and will be 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)

 

Further information on study results will be forthcoming shortly.

FMI:  Matthew P. Janicki, Ph.D.

     National Task Group on Intellectual Disabilities and Dementia Practices. © 2020                           www.the-ntg.org                                                       Edited 12/3/20

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