Examining Models of Dementia Care: Final Report. 1. INTRODUCTION


More than 5 million Americans are living with dementia, and the number is projected to increase to 13.8 million by 2050 (Hebert et al., 2013; NIH, 2016). Dementia affects a person's cognitive function, behavior, and ability to perform everyday activities such as shopping, paying bills, and managing medications (Alzheimer's Association, 2016; NIH, 2016). Over time, individuals require more assistance from others to meet basic needs, and quality of life is adversely affected. People with dementia and their caregivers receive care through a range of programs that provide care and support. Adult day services, special care units in assisted living and nursing homes, and caregiver support programs are just a few of the types of programs for people with dementia.

Currently, there are no pharmacological treatments that significantly slow or stop the progression of Alzheimer's disease, the most common cause of dementia (Cummings, 2014; NIH, 2016). However, many nonpharmacological approaches and care practices have been shown to have some positive effects for people with Alzheimer's disease or other dementias who live in the community and family caregivers (Maslow, 2012), such as decreased caregiver burden, stress, depression, and anxiety (Nichols, 2014; Smith, 2005; Teri, 2005); decrease in behavioral symptoms of people with dementia (Gitlin, 2016; Nichols, 2014), and a decrease in negative reactions to behavioral symptoms by caregivers (Gaugler, 2016; Gitlin, 2009; Teri, 2005). Relative few studies have examined "harder" outcomes, such as the impact on hospitalization and emergency department use.

Despite the existence of evidence-based interventions that are effective for some outcomes and populations, the availability of these services for people with dementia and their family caregivers is limited. Although a few models of dementia care are available in some communities across the country, none are widely accessible, and it has been difficult to achieve sufficient sustainable funding to make them available to the number of people with dementia and family caregivers who could benefit from them (Gitlin, 2015; Maslow, 2012).

Relatively little is known about the scope of services that programs for people with dementia and their caregivers actually supply, the quality of care provided, or the outcomes of those programs. For example, of the many guidelines available on services for people with Alzheimer's disease and their caregivers, none specify actual outcomes of care that should be measured or outcome targets. All of the guidelines specify either structural or process activities.

This project sought to add to knowledge about programs serving people with dementia by defining care components of dementia programs that can be used to assess a wide variety of dementia care providers, care settings, and stage of dementia and then assessing how a small sample of dementia care programs addressed these components. More specifically, this project:

  • Synthesized existing dementia care guidelines into a set of care components with normative standards of care.

  • Developed a catalog of dementia care interventions, emphasizing evidence-based programs.

  • Selected five currently operating dementia care programs from the catalog of interventions for case studies to assess how they addressed the dementia care guidelines.

  • Conducted cross-case study site analyses and drew implications for dementia care and future research.

1.1. Introduction References

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