Sources¶
The full bibliography underpinning this wiki. Every cited claim traces to a source listed here. 166 entries total, grouped by type below.
Last updated: 2026-05-20.
Reports & surveys (38)¶
- 2026 Top 10 Health Technology Hazards (2026) — ECRI Institute
- The Patient Voice in GenAI Mental Health Chatbots (2026) — Morrissey, S. / National Health Council
- 2025 Alzheimer's Disease Facts and Figures (2025) — Alzheimer's Association
- Advisory on GenAI and Mental Health (2025) — American Psychological Association
- AI-Powered Rules as Code (2025) — Beeck Center at Georgetown University
- Caregiving in the United States 2025 (2025) — AARP, National Alliance for Caregiving
- Caregiving in the US 2025: Caring Across States (2025) — National Alliance for Caregiving, AARP
- Exploring Rules Communication: Moving Beyond Static Documents to Standardized Code for U.S. Public Benefits Programs (2025) — Beeck Center at Georgetown University
- State Caregiving Emergency Index (2025) — Columbia University
- Strategies and Interventions to Strengthen Support for Family Caregiving — NASEM Workshop Agenda (2025) — National Academies of Sciences, Engineering, and Medicine — Board on Health Care Services
- The Family Caregiver Gap: Disparities and Missed Opportunities in Support Services Across U.S. Transplant Centers (2025) — National Alliance for Caregiving
- The Future of Connected Care: Enabling Healthy Longevity and Aging at Home (2025) — Dunning L, Rossano J
- The State of FamTech 2025: Insights from Founders, Investors & Collaborators (2025) — FamTech.org
- Understanding the OPTN Modernization Initiative & Implications for Caregivers (2025) — National Alliance for Caregiving
- 2024 Report to Congress on the National Strategy to Support Family Caregivers (2024) — Administration for Community Living (ACL)
- A Home Care Benefit for Medicare (2024) — Brookings Institution
- Benefits Enrollment Field Guide 2024 (2024) — Code for America
- Caring for Tomorrow: A Guide to Investing in the Care Economy (2024) — Eppanapally P, Ngunga S (Women of the World Endowment), Bussman-Wise J (Tesser Capital Management)
- Gaps and Opportunities: Family Caregiver Programs in U.S. Transplant Centers (2024) — National Alliance for Caregiving (Reid KG, Mitchell H-R)
- National Strategy to Support Family Caregivers: Progress & Impact Report (2024) — NASHP (National Academy for State Health Policy)
- Stranded by the Safety Net: How to Fix the Benefit Cliff Problem (2024) — American Enterprise Institute
- Working while caregiving: It\'s complicated (2024) — S&P Global; AARP
- AI and the Future of Care Work: The Rise of the AI Caregiver (2023) — Laurie M. Orlov
- Economic Impacts of Programs to Support Caregivers: Final Report (2023) — Urban Institute
- Transplant Caregiving in the U.S.: A Call for System Change (2023) — National Alliance for Caregiving (Cothran F, Mitchell H-R, Montoya Y, Tokarewich L)
- Caregivers in the Workplace: Resource Guide for Businesses (2022) — New York State Office for the Aging; New York State Department of Labor
- National Strategy to Support Family Caregivers (2022) — U.S. Department of Health and Human Services
- REACH II (Resources for Enhancing Alzheimer’s Caregiver Health) (2022) — National Council on Aging / ACL evidence-program summary
- Family Caregiver Domains of Preparedness (2021) — Family Caregiving Institute
- Interprofessional Family Caregiving Competencies (2021) — Sexson KE et al., Family Caregiving Institute, Betty Irene Moore School of Nursing at UC Davis
- Research Priorities in Caregiving: Advancing Family-Centered Care across the Trajectory of Serious Illness (2019) — Family Caregiving Institute, Betty Irene Moore School of Nursing at UC Davis
- From Caregiver to Caregiver: The Wisdom and Insights of Former NFCSP Caregivers (2018) — Administration for Community Living, New Editions Consulting, Lewin Group
- Process Evaluation of the Older Americans Act Title III-E National Family Caregiver Support Program: Final Report (2016) — Administration for Community Living, Lewin Group
- Evaluation of Consumer, Program, and System Characteristics under the Supportive Services Program (Title III-B) of the Older Americans Act (2007) — Rabiner DJ, Wiener JM, Khatutsky G, Brown DW, Osber DS (RTI International)
- Caregiving for Family and Friends — A Public Health Issue
- Family Caregivers: Long-Term vs Short-Term Profile
- Living with ALS: Supporting Caregivers
- Transportation Options for Older Adults and People with Disabilities
Research papers (30)¶
- Drift-Bench: Cooperative Breakdowns in Conversational AI (2026) — Drift-Bench Authors
- Family caregivers' acceptance of AI-enabled technologies for providing care to older adults (2026) — Yee et al.
- Intent Mismatch in Multi-Turn Conversations (2026) — Liu et al.
- SimpleMem: Simple Yet Effective Memorization with Extractive Retrieval (2026) — SimpleMem Authors
- Slow Drift of Support: How Mental Health Chatbots Fail Over Long Conversations (2026) — Cheng, M. et al.
- A Neuro-Symbolic Framework for Accountability in Algorithmic Decision-Making (2025) — arXiv:2512.12109
- AI Reinforces Maladaptive Patterns in Mental Health (2025) — Au Yeung et al.
- AI-Caregiving and AI-Health Research (arXiv preprints, 2022–2025) (2025) — Various
- Chameleon: Stance Shifting in LLM Responses (2025) — Chameleon Authors
- Companionship to Mediationship: AI Mediation Between Caregivers and Systems (2025) — ACM DIS 2025
- Context Drift Equilibria: Reminder Interventions for Longitudinal Stability (2025) — Dongre et al.
- Demographic Bias in LLM-Driven Caregiving (2025) — Korpan
- ENGRAM: Episodic/Semantic/Procedural Typed Memory Evaluation (2025) — ENGRAM Authors
- Lost in Conversation: Long-Context Unreliability in LLMs (2025) — Laban et al.
- Mapping Caregiver Needs to AI Design (2025) — Shi et al.
- PBSuite: Multi-Turn Policy Adherence Under Adversarial Pressure (2025) — PBSuite Authors
- Role-Based Response Asymmetry in Mental Health AI (2025) — Kaur et al.
- Stanford Bridge Study: Masked Means Detection Failure (2025) — Moore et al.
- Technological Folie a Deux: Feedback Loops Between AI and Mental Illness (2025) — Dohnany et al.
- Trauma-Informed Content Design (2025) — Legawiec, K.
- Association of Safety-Net Program Participation with Government Perceptions, Welfare Stigma, and Discrimination (2024) — Health Affairs Scholar
- Belonging Without Othering: How We Save Ourselves and the World (2024) — powell, john a. & Menendian, S.
- Fostering AI-Based Supports for Informal Caregivers: A Systematic Review (2024) — Milella, F. & Bandini, S.
- THEANINE: Timeline-Based Memory Retention (2024) — THEANINE Authors
- Who Do We Become When We Talk to Machines? (2024) — Sherry Turkle
- Care Is a Relationship (2023) — Anne-Marie Slaughter
- MemGPT: Towards LLMs as Operating Systems (2023) — Packer, C. et al.
- Peer Support Research: Navigation, Not Treatment (2022) — Joo, Y. K. et al.
- Knowledge Graphs for Social Good: Protecting Vital Health and Social Programs (2021) — IBM Research
- Alone Together: Why We Expect More from Technology and Less from Each Other (2011) — Turkle, S.
Academic literature (20)¶
- Assessment of Daily Function and Neuropsychiatric Symptoms of Dementia in Practice (2025) — Bradford C. Dickerson, MD
- Behavioral and Psychological Symptoms of Dementia (BPSD) and the DICE Approach (2025) — Helen C. Kales, MD
- Caregiving in Dementia: Impact, Consequences & Opportunities (NYU Caregiver Intervention) (2025) — Mary S. Mittelman, DrPH
- Harvard Medical School Dementia: A Comprehensive Update — 2025 CME Course (2025) — Multiple faculty — Harvard Medical School / Mass General Hospital
- Mind Care: A Clinically and Ethically Informed Approach to the Care of Persons Living with Neurodegenerative Diseases (2025) — Jason Karlawish, MD
- PROMIS Healthcare Access Satisfaction (2025) — PROMIS Health Organization
- PROMIS Illness Burden (2025) — PROMIS Health Organization
- PROMIS Fatigue (2024) — PROMIS Health Organization
- PROMIS Anxiety (2023) — PROMIS Health Organization
- PROMIS Depression (2023) — PROMIS Health Organization
- PROMIS Social Isolation (2023) — PROMIS Health Organization
- PROMIS Companionship (2022) — PROMIS Health Organization
- PROMIS Meaning and Purpose (2022) — PROMIS Health Organization
- PROMIS General Life Satisfaction (2021) — PROMIS Health Organization
- PROMIS Self-Efficacy (2021) — PROMIS Health Organization
- Burden Scale for Family Caregivers (BSFC-s) (2014) — Graessel E et al.
- Modified Caregiver Strain Index (MCSI) (2013) — Thornton, M.; Travis, S.S.; Hartford Institute for Geriatric Nursing summary sheet
- The Caregiver Well-Being Scale Revisited (2013) — Tebb SC, Berg-Weger M, Rubio DM
- Brief Assessment Scale for Caregivers of the Medically Ill (BASC) (2005) — Glajchen, M.
- Zarit Burden Interview (1980) — Zarit, S.H. et al.
Statutes & regulations (10)¶
- California SB 243 (2025) — California State Legislature
- Maine 10 Section 1500-DD (2025) — Maine State Legislature
- Nevada AB 406 (2025) — Nevada State Legislature
- New York Article 47 (GBS 1700) (2025) — New York State Legislature
- Utah HB 452 (2025) — Utah State Legislature
- WOPR Act (Working to Obviate Pervasive Risks Act) (2025) — Illinois General Assembly
- Colorado SB24-205 (2024) — Colorado General Assembly
- EU AI Act (Regulation 2024/1689) (2024) — European Parliament and Council of the European Union
- California AB 3030 (2023) — California State Legislature
- FDA General Wellness Framework (2023) — U.S. Food and Drug Administration
Frameworks & standards (17)¶
- AI Evaluation: 5 Criteria (2026) — National Alliance on Mental Illness (NAMI) & Dr. John Torous, Beth Israel Deaconess Medical Center
- Belonging: A Resource Guide for Belonging-Builders (2025) — Gallegos, A. & Surasky, C. / Othering & Belonging Institute, UC Berkeley
- AI 600-1: Generative AI Profile (2024) — NIST
- Benefits Playbook: Designing Human-Centered Applications (2024) — Code for America
- Suicide and Crisis Lifeline Digital Toolkit & Standards (2024) — SAMHSA / 988 Suicide and Crisis Lifeline
- TIDS Framework: Trauma-Informed Digital Safeguards (2024) — TIDS Framework Authors
- DSM-5-TR (Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, Text Revision) (2022) — American Psychiatric Association
- ICD-11, QD85: Burnout (2022) — World Health Organization
- A Framework for Integrating Family Caregivers into the Health Care Team (2020) — Friedman, E. M. & Tong, P. K. / RAND Corporation
- Targeted Universalism Methodology (2019) — powell, john a., Menendian, S. & Ake, W. / Othering & Belonging Institute, UC Berkeley
- Zero Suicide Framework (2015) — Education Development Center (EDC)
- Concept of Trauma and Guidance for a Trauma-Informed Approach (2014) — Substance Abuse and Mental Health Services Administration (SAMHSA)
- The HCBS Taxonomy: A New Language for Classifying Home- and Community-Based Services (2014) — Peebles, V. & Bohl, A.
- Columbia Suicide Severity Rating Scale (C-SSRS) (2011) — Columbia University
- The Polyvagal Theory (1995) — Porges, S.W.
- The Necessary and Sufficient Conditions of Therapeutic Personality Change (1957) — Rogers, C.R.
- CARE Framework: Context & Means Detection — Rosebud AI
Websites & practical guides (37)¶
- ABLE Accounts and Trust Options for Structured Settlements (2026) — ABLE National Resource Center
- SSA Spotlight on ABLE Accounts (2026) — Social Security Administration
- SSA Spotlight on Trusts (2026) — Social Security Administration
- SSA: How much you could get from SSI (2026) — Social Security Administration
- SSA: Who can get SSI (2026) — Social Security Administration
- Supporting Veterans with ALS (2024)
- AARP HomeFit Guide (2022) — AARP
- What Is a Special Needs Trust? (2020) — Special Needs Alliance
- A Guide for Support Partners (2019) — National MS Society
- Dementia: A Serious Illness (2018)
- Dementia: Improving Care for Family Members (2018) — Administration on Aging / Administration for Community Living
- 10 Warning Signs Your Older Family Member May Need Help — Administration for Community Living / Eldercare Locator
- ABLE National Resource Center: What is ABLE? — ABLE National Resource Center
- Advance Care Planning for Serious Illness — Administration on Aging / Administration for Community Living
- Advance Care Planning: A Conversation Guide — National Institute on Aging
- ALS Association Programs and Services — The ALS Association
- Alzheimer's Association Help & Support — Alzheimer's Association
- American Cancer Society Support Programs and Services — American Cancer Society
- ARCH National Respite Locator and State Respite Contacts — ARCH National Respite Network & Resource Center
- Before You Give Up the Keys: Create a Roadmap for Transportation Independence — Eldercare Locator; National Aging and Disability Transportation Center
- Care for Advanced Cancer
- Caregiver Action Network Help Desk and Resource Hub — Caregiver Action Network
- Caring for Siblings of Kids With Disabilities
- Eldercare Locator: Face the Facts — Administration for Community Living / Eldercare Locator
- Families and Serious Illness
- Family Caregiver Alliance: Connecting Caregivers — Family Caregiver Alliance
- Hospice Care
- Hospital Discharge: Successful Transition — Administration for Community Living / Eldercare Locator
- Medicines: Managing the Impact of Medicine on Your Brain Health — Administration on Aging / Administration for Community Living
- NAMI HelpLine and Family Caregiver Support — National Alliance on Mental Illness
- National Alliance for Caregiving: Research, Policy, and Caregiver Resources — National Alliance for Caregiving
- NIA Caregiver Worksheets — National Institute on Aging
- Palliative Care
- Take Care of Yourself as a Caregiver — National Institute on Aging
- The Caregiver's Handbook — National Institute on Aging
- VA Caregiver Support Program — U.S. Department of Veterans Affairs
- What a Cancer Caregiver Does — American Cancer Society
GiveCare reference notes (8)¶
- ADR-0001: Crisis Gate Ordering (2026) — GiveCare
- Data Agent SMS Runtime (Convex code) (2026) — GiveCare
- GiveCare Backend Specification (2026) — GiveCare
- GiveCare Market Map (2026) — GiveCare
- GiveCare North Star (2026) — GiveCare
- SMS Journey Orchestration Contract (2026) — GiveCare
- SMS Mira Soul (2026) — GiveCare
- SMS Voice Guide (2026) — GiveCare
Other sources (6)¶
- Care Philosophy Background Reading (Roach, Lewis, Kohr, Islamic Virtue Ethics, Systems, Design) (2024) — Various
- HIPAA, SOC 2, and HITRUST Compliance Checklists (2024) — Vanta
- Patient Advocacy Bootcamp and Getting Started Guide (2023) — Alliance of Professional Health Advocates (APHA) and affiliated programs
- PRAPARE Implementation and Action Toolkit (2019) — National Association of Community Health Centers (NACHC)
- Accountable Health Communities Health-Related Social Needs Screening Tool (2017) — Centers for Medicare & Medicaid Services (CMS)
- Social Determinants of Health Framework (2017) — National Academy of Medicine (NAM)