A Naturalistic Examination of the Evolution of Three Specialty Group Homes for Dementia-related Care of Adults with Intellectual Disabilities
- Collect longitudinal data on three newly developed dementia care group homes.
- Determine whether level of care home specialization will occur.
‘Wichita Study’ Findings: Changes in Dementia Care Group Homes as Residents Age
Agencies responsible for care of older adults with intellectual disabilities (ID) are developing small dementia-care group homes that can serve as community care alternatives. Such small group homes are designed to be ‘dementia-capable’ and provide for extended older age care. As dementia affects adults differentially, both with respect to symptoms and to the pathway of decline, it was hypothesized that given differential timelines and patterns of decline such dementia care homes will eventually be defined by the nature of their residents in terms of residual functional skills and personal care needs.
Given stage-specific changes that eventually occur, a longitudinal study is underway of three such dementia-care community-based group homes (which were opened simultaneously) to observe progression of decline in home residents (matched for adults absent dementia) and alterations in care practices. One aim is to document functional change associated with dementia over time; another is to see if home specialization will occur. During the first phase, three-years through the study, it has been observed that dementia care has been affected by differences in complexity of impairments and co-incident conditions found in adults with intellectual disability and dementia. Specifically, noted were significant differences in the number of comorbidities, staff time devoted to specialized care, and frequency of occurrence of dementia-associated behaviors between dementia-care group home residents and controls. Also, among all residents of the three homes, adults with Down syndrome were younger and had significantly less comorbidities. With respect to specialization, some trending is evident of differentiation among the homes (with evident decline patterns), was observed.
After three years, there is:
- evidence of change in function and increasing health problems or less ‘wellness’;
- that residents in homes #2 & #3 showed the greatest impact of dementia over the three years;
- there is a higher number of co-morbidities among dementia residents compared to controls;
- data that staff time spent on caregiving in the dementia homes was much more than that for ‘the controls’; and
- trending toward individual home specialization as to level of care.
Results point to potential specialization over time if agency assigns new residents by level of care needs. Generally, it is evident that dementia care is affected by differences in complexity of impairments and co-incident conditions found in adults with dementia. When able, agencies will operate several dementia capable homes and will – over time – either administratively assign residents to home by degree of dementia-related impairment care needs or this will happen organically by virtue of how agencies replace adults who leave due to death or infirmity.
Initial recommendations for other operators of such housing and dementia care programs include:
- planning should consider utility of matching incoming residents by stage of dementia impairment to maximize care outcomes;
- allocate greater number of staff to high demand care for those adults with mid-stage dementia;
- have a specialized home for adults with advanced dementia; and
- track co-morbidities and ensure appropriate medical attention as dementia progresses.
The second phase, in the latter half of the study, is currently underway. To date five of the adults with dementia have died, and new residents have been entered into the study. Patterns of specialization with respect to function differences among the residents in the homes are still evident. Residents of one home continue to be the most advanced in their dementia, while residents of another home are the least advanced. Tracking of functional abilities and losses continues and reviews are being held of care practices.