Group home care for adults with intellectual disabilities and Alzheimer’s disease

Abstract

The growing numbers of individuals with intellectual disabilities affected by Alzheimer's disease and related dementias has raised new challenges for community care providers. This article examines means of providing community group home-based care in a sample of care providers in five different countries. The aim is to identify trends that have emerged. Two samples of group homes for adults with intellectual disabilities affected by dementia were studied to determine: (1) what are the physical characteristics of the homes;(2) what physical environmental adaptations have been made in response to behavioral deterioration expressed by residents with dementia; and (3) what are the demands on staff resulting from dementia care. The first sample of group homes in five countries provided comparative international data on home designs, staffing, costs, and residents. The second sample, drawn from homes in the USA and the UK, provided data on the impact of dementia. Findings revealed staffing and design of homes varied but generally abided by general practices of dementia care; homes relied on existing resources to manage changes posed by dementia care; programmatic and environmental adaptations were implemented to address progression of dementia; and residents with dementia presented more demands on staff time with respect to hygiene maintenance and behavior management when compared to other residents not affected by dementia. de men tia d e m e n t i a © 2005 sage publications www.sagepublications.com vol 4(3) 361-385

Coping with dementia and older families of adults with Down syndrome

“…Further, the fact that most of the carers opted in the future for some kind of small family-living situations for their offspring, over institutional care, is telling. This reinforces the belief that either other family members may provide aid as caregiving becomes problematic or that these carers may turn to agencies that are operating and promoting alternative care settings, primarily small neighborhoodbased group homes (Janicki et al, 2005).…”

“…It was noteworthy that the types of initial changes noted by these carers paralleled for the most part those noticed by paid formal carers in group homes (Janicki et al, 2005). Primarily early stage changes observed involved noted forgetfulness, losses in personal skills, and changes in personality, all behaviors also noted by both group home staff in our previous study and generally reported in the literature (Donaldson et al, 1998;Janicki et al, 2005). Noteworthy also was the fact that the more challenging behaviors, such as wandering, becoming argumentative or aggressive, experiencing sleeping difficulties, incontinence, and rummaging -generally indicative of mid-stage dementia -were also present and commented upon by both staff and the family carers.…”

“…We then wanted to look at what the demands are on care practices of families with someone with ID at home affected by dementia for comparative purposes as we had previously assessed how group home staff coped with ensuing dementia in residents (Janicki, McCallion, & Dalton, 2002;Janicki et al, 2005). From our previous study, we had comparative demographic, symptom presentation, and care management demands data on people with ID affected by dementia living in group homes.…”

Professional carers’ experiences of caring for individuals with intellectual disability and dementia

“…At mid-stage supervising eating and drinking, and behaviour support took longer, whereas at end-stage assisting people to use the toilet, and health-related care took longest . Similarly, Janicki et al (2005) , 2002) found that staff did not spend extra time caring for individuals who were in early stage dementia (n ¼ 9) compared to those without dementia (n ¼ 11). While the nature of caregiving tasks was not reported to be difficult using the Caregiver Difficulty Survey-Intellectual Disability , seven of the nine carers working with individuals with early stage dementia experienced stress on the Maslach Burnout Inventory (Maslach et al, 1996).…”

Screening Adults with Down's Syndrome for Early Signs of Dementia

“…There is a growing literature on the accommodation needs of people with LD and dementia, much of which recommends 'ageing in place' -avoiding moves by keeping people in their familiar home environment with additional support (Janicki et al, 2005). Kerr (1997) has described the detrimental effects on people with dementia of multiple moves.…”