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.
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 |
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 |
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) |
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.
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