ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES
Monday, April 17, 2017
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Examining Models of Dementia Care
- This study was funded by ASPE under contract number HHSP23320100021W1
- Rohini Khillan, MPH, was the Project Officer
- All views expressed in this presentation are those of the authors and do not necessarily represent the views of ASPE or RTI International
- RTI International
- Joshua M. Wiener, PhD, Project Director
- Elizabeth Gould, MSW
- Sari Shuman, MPH, MSW
- Ramandeep Kaur, PhD
- Magdalena Ignaczak, BS
- Independent Consultant
- Katie Maslow, MSW
- Nonpharmacological approaches and care practices have been shown to have positive effects for some people with Alzheimer's disease or other dementias.
- Although many organizations have guidelines on good dementia care, current systematic syntheses of those guidelines may be lacking.
- Little is known systematically about what services dementia programs provide across settings.
- Little is known about how programs address desirable care components.
- Synthesize existing dementia care guidelines
- Develop catalog of dementia care programs
- Drawing from catalog of dementia care programs, conduct case studies of five programs to assess how they meet our dementia care guidelines
- Conduct cross-site analyses and draw implications for dementia care and future research
Synthesize Existing Dementia Care Guidelines
- Identified 37 sets of dementia care guidelines, which focused on structure and process rather than outcomes
- Identified 16 (later revised to 14) key domains
- Synthesized guideline recommendations into both high-level and more specific recommendations
- Goal was standards that were profession-, setting- and dementia-stage free
- Care components reviewed by five experts in the field
Dementia Care Components
- Detection of possible dementia
- Assessment and ongoing reassessment
- Care planning
- Medical management
- Information, education, and informed and supported decision-making
- Acknowledgment and emotional support for the person with dementia
- Assistance for the person with dementia with daily functioning and activities
- Involvement, emotional support, and assistance for family caregiver(s)
- Prevention and mitigation of behavioral and psychological symptoms of dementia
- Safety for the person with dementia
- Therapeutic environment, including modifications to the physical and social environment of the person with dementia
- Care transitions
- Referral and coordination of care and services that match the needs of the person with dementia and family caregiver(s) and collaboration among agencies and providers
Identification of Models of Dementia Care
- Conducted environmental scan to:
- Provide a catalog of interventions
- Provide universe from which case studies could be selected
- Included variety of settings--nursing homes, residential care facilities, home and community-based services, primary care, hospice, and caregiver support programs
- Focus on evidence-based programs and interventions that have been translated to community settings
- Identified 55 interventions, mostly community-based settings that provided support for caregivers
- How do "real-life" programs address the 14 care components?
- From pool of 55 interventions/programs, selected 5 programs for case studies
- Range of type of program
- BRI Care Consultation™ (Cleveland, Ohio)
- Comfort Matters™ (Phoenix, Arizona)
- Healthy Aging Brain Center (Indianapolis, Indiana)
- MIND at Home (Baltimore, Maryland)
- RCI REACH (Georgia)
Case Study Findings
- None of the five programs had procedures to detect possible dementia in the general population.
- None of the five programs directly addressed all 14 components, but most of the programs addressed most of the components.
- Programs used three ways to address components: direct provision of the needed assistance; referral to another agency; and information, education, skills training, and encouragement to help family caregivers.
- All programs conducted assessment, reassessment, and care planning activities that facilitated the provision of individualized, person-centered care.
- Programs with medical staff were able to provide formal diagnosis of dementia. Other programs sometimes referred for diagnostic evaluations, but a formal diagnosis was not a prerequisite for participation in any programs.
- Although there is no cure for Alzheimer's disease, there are a substantial number of evidence-based interventions that have some effect on outcomes such as caregiver burden and depression.
- Extremely large number of dementia care guidelines exist, but not quantitative measures.
- Development of dementia care components is a major advance and should be disseminated and endorsed by relevant organizations.
- With only five case studies, not possible to make definitive judgments; additional case studies would improve our understanding.
- We found:
- Most programs address the vast majority of dementia care components, either directly or indirectly.
- Most programs focused on caregivers rather than person with dementia; residential and medical programs most likely to have substantial interaction with person with dementia.
- Programs varied greatly in the degree to which they were involved in medical management.
- Several programs had invested a great deal of effort into developing a library of resources for people with dementia and caregivers; a federal initiative to do that might be appropriate.
Elizabeth Gould, MSW
230 W. Monroe St. Suite 2100
Chicago, IL 60606
April 17, 2017 -- Advisory Council Meeting #24
The meeting was held on Monday, April 17, 2017, in Washington, DC. The Advisory Council spent the majority of the April meeting considering recommendations made by each of the three subcommittees for updates to the 2017 National Plan. Afternoon presentations included a presentation on results from a research project on dementia care components, planning progress towards a Care and Services Summit, and federal workgroup updates. Material available from this meeting is listed below and is also available at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-meetings#Apr2017.
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