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Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward (2021)

Chapter: Appendix A: Agency for Healthcare Research and Quality Systematic Review and Inclusion Criteria

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Suggested Citation:"Appendix A: Agency for Healthcare Research and Quality Systematic Review and Inclusion Criteria." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
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APPENDIX A

AGENCY FOR HEALTHCARE RESEARCH AND QUALITY SYSTEMATIC REVIEW AND INCLUSION CRITERIA

The Agency for Healthcare Research and Quality (AHRQ) systematic review Care Interventions for People Living with Dementia and Their Caregivers, which provided the primary evidence base for this study, can be found here: https://effectivehealthcare.ahrq.gov/products/care-interventions-pwd/report (accessed January 29, 2021). Table A-1 presents the inclusion criteria applied by the systematic review authors.

Suggested Citation:"Appendix A: Agency for Healthcare Research and Quality Systematic Review and Inclusion Criteria." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
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TABLE A-1 PICOTS Inclusion Criteria for AHRQ Systematic Review

Element PLWD PLWD Caregiver
Population PLWD, including individuals with possible or diagnosed AD/ADRD Informal PLWD Caregivers, such as spouses, family, friends, and volunteers
PLWD Subgroups:
Age, sex, sexual orientation/gender identity, race/ethnicity, education, socioeconomic status, prior disability, age at diagnosis, dementia type, dementia severity (e.g., stage of dementia [early stage, moderate, or severe], level of cognitive impairment rate of cognitive decline), family/household characteristics, health insurance, geographic location (e.g., urban, rural), setting type

Informal PLWD Caregiver Subgroups, including age, sex, sexual orientation/gender identity, race/ethnicity, family history of dementia, education, socioeconomic status, employment status, relationship with PLWD, living distance from PLWD, dementia care training, general health status, caregiving networks, setting type

Formal PLWD Caregivers, such as certified nursing assistants (CNAs), home health aides, auxiliary workers, personal care aides, hospice aides, promotoras or promotores, and community health workers
Formal PLWD Caregiver Subgroups, including age, sex, race/ethnicity, education, job position, skill, training, general health status, setting type
Suggested Citation:"Appendix A: Agency for Healthcare Research and Quality Systematic Review and Inclusion Criteria." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
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Element PLWD PLWD Caregiver
Intervention Any nondrug care intervention intended to benefit PLWD except interventions to treat conditions other than dementia, including but not limited to CPAP, and those that use supplements/natural products Any care intervention intended to support informal PLWD caregivers’ well-being except interventions to treat health conditions unrelated to providing care to PLWD
Any care intervention intended to support formal PLWD caregivers’ well-being except interventions to treat health conditions unrelated to providing care to PLWD
Any care delivery intervention to improve how care is delivered if the training intervention is incorporated as on-going operational procedures into the structure or processes of the organization. Interventions carried out by higher education organizations or professional organizations to provide training toward licensed professionals, and continuing education for degreed health professionals are also excluded
Comparator Inactive Comparator: No intervention, usual care, waitlist, attention control Active Comparator: Different intervention Inactive Comparator: No intervention, usual care, waitlist, attention control Active Comparator: Different intervention
Suggested Citation:"Appendix A: Agency for Healthcare Research and Quality Systematic Review and Inclusion Criteria." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
Element PLWD PLWD Caregiver
Outcomes Quality of life and subjective
well-being
Burden of care
Satisfaction with care
Perceived support
Expenditures/financial burden (informal caregivers)
Health-related outcomes:
Psychological health (e.g., depression, anxiety)
Neuropsychiatric symptoms (including apathy, aggression, and agitation)
Function (e.g., ADL, IADL, ability to care for one’s self, ability to recreate/socialize)
Weight loss
Sleep problems
Use of restraints
Use of anti-psychotics
Harm reduction (e.g., driving, firearms)
Palliative care/hospice outcomes:
Completion of advanced directives
Comfort during dying process
Concordance with preferred location of death
Social/Community level outcomes:
Engagement in community activities
Perceived inclusion
Safety/perceived safety
Utilization of health care service outcomes:
Admission to nursing home
Access to care and services
ICU and ED usage
Hospital admission and readmission
Primary, Specialty, Long-term
Care usage
Quality of care and services (e.g., overutilization of unnecessary antibiotics, other quality care metrics)
Societal costs, including caregiving time/time spent on activities
Harms, including isolation, loneliness, perceived stigma, suicidal ideation or suicide, elder abuse (e.g., physical harm, abuse, neglect, exploitation, family violence)
Quality of life and subjective well-being
Burden of care
Satisfaction with care for PLWD (informal caregivers)
Perceived support
Expenditures/financial burden (informal caregivers)
Health-related outcomes:
Psychological health (e.g., depression, anxiety)
Immune function (e.g., inflammation or cortisol)
Sleep problems
Weight loss due to stress
Health behaviors (e.g., exercise, substance use)
Caregiving self-efficacy
Confidence to manage caregiver tasks
Social/community-level outcomes (informal caregivers):
Engagement in community activities
Perceived inclusion
Safety/perceived safety
Turnover and retention (formal caregivers)
Utilization of health care service (e.g., physician visits, antidepressant or antianxiety medication usage)
Suggested Citation:"Appendix A: Agency for Healthcare Research and Quality Systematic Review and Inclusion Criteria." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
Element PLWD PLWD Caregiver
Societal costs including caregiving time/time spent on activities
Harms, including isolation, loneliness, perceived stigma, caregiver PTSD
Timing No minimum duration or follow-up No minimum duration or follow-up
Setting Any setting; no exclusion based on geographic location or setting. Includes home, home health care, adult day care, acute care settings, social service agencies, nursing homes, assisted living, memory care units, hospice, rehabilitation centers/skilled nursing facilities, long-distance caregiving, and nonplace-based settings Any setting; no exclusion based on geographic locations or setting. Includes home, home health care, adult day care, acute care settings, social service agencies, nursing homes, assisted living, memory care units, hospice, rehabilitation centers/skilled nursing facilities, long-distance caregiving, and nonplace-based settings

NOTE: ADL = activity of daily living; CPAP = continuous positive airway pressure; ED = emergency department; IADL = instrumental activity of daily living; ICU = intensive care unit; PLWD = person living with dementia; PTSD = posttraumatic stress disorder.

SOURCE: Excerpted from Butler et al., 2020; for additional details, see Appendix A of Butler et al., 2020.

REFERENCE

Butler, M., J. E. Gaugler, K. M. C. Talley, H. I. Abdi, P. J. Desai, S. Duval, M. L. Forte, V. A. Nelson, W. Ng, J. M. Ouellette, E. Ratner, J. Saha, T. Shippee, B. L. Wagner, T. J. Wilt, and L. Yeshi. 2020. Care interventions for people living with dementia and their caregivers. Comparative Effectiveness Review No. 231. Rockville, MD: Agency for Healthcare Research and Quality. doi: 10.23970/AHRQEPCCER231.

Suggested Citation:"Appendix A: Agency for Healthcare Research and Quality Systematic Review and Inclusion Criteria." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×

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Suggested Citation:"Appendix A: Agency for Healthcare Research and Quality Systematic Review and Inclusion Criteria." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
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Suggested Citation:"Appendix A: Agency for Healthcare Research and Quality Systematic Review and Inclusion Criteria." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
Page 182
Suggested Citation:"Appendix A: Agency for Healthcare Research and Quality Systematic Review and Inclusion Criteria." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
Page 183
Suggested Citation:"Appendix A: Agency for Healthcare Research and Quality Systematic Review and Inclusion Criteria." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
Page 184
Suggested Citation:"Appendix A: Agency for Healthcare Research and Quality Systematic Review and Inclusion Criteria." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
Page 185
Suggested Citation:"Appendix A: Agency for Healthcare Research and Quality Systematic Review and Inclusion Criteria." National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington, DC: The National Academies Press. doi: 10.17226/26026.
×
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Millions of people are living with dementia in the United States and globally. To live well with dementia, people need care, services, and supports that reflect their values and preferences, build on their strengths and abilities, promote well-being, and address needs that evolve as cognitive impairment deepens.

Persons living with dementia co-manage their care with or rely on the support of a wide range of care partners and caregivers, including spouses, other family members and friends, and direct care workers in homes or residential care settings. While dementia care has improved since the 1970s, many individuals still lack access to high-quality care and are not living as well as they might. Disadvantaged groups, especially racial and ethnic minorities, still face challenges in access to care, services, and supports, due to deep and persistent inequities.

Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward examines the complex body of evidence on dementia care and informs decision making about which interventions are ready to be broadly disseminated and implemented. It also offers a blueprint to guide future research using rigorous, cutting-edge methods that are inclusive, equitable, and yield critical information for real-world implementation, toward the ultimate goal of better supporting persons living with dementia and their care partners and caregivers in living as well as possible.

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