Sources

The full bibliography underpinning this wiki. Every cited claim traces to a source listed here. 232 entries total, grouped by type below.

Last updated: 2026-07-24.

Reports & surveys (39)

• 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
• Coverage Appeals (2025) — Centers for Medicare & Medicaid Services
• 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)
• Living with ALS: Supporting Caregivers (2024) — National Academies of Sciences, Engineering, and Medicine
• 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) — Administration for Community Living
• 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
• Transportation Options for Older Adults and People with Disabilities

Research papers (49)

• 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.
• Mapping Caregiver Needs’ Assessment Tools for Family and Friend Caregivers (2026) — Ding X 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.
• European Academy of Neurology Guideline on the Management of ALS (2024) — Van Damme P, Al-Chalabi A, Andersen PM, et al.
• Fostering AI-Based Supports for Informal Caregivers: A Systematic Review (2024) — Milella, F. & Bandini, S.
• Randomized controlled trials on promoting self-care behaviors among informal caregivers of older patients: a systematic review and meta-analysis (2024) — BMC Geriatrics
• 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.
• Development and Evaluation of the Eight-Item Caregiver Self-Efficacy Scale (2022) — Ritter PL, Sheth K, Stewart AL, Gallagher-Thompson D, Lorig K
• 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
• Savvy Caregiver / Tele-Savvy (2021) — Kally Z, et al. / Emory University
• A Problem-Solving Intervention for Hospice Family Caregivers: A Randomized Clinical Trial (PISCES) (2019) — Demiris G, et al.
• HI-FIVES: Family Caregiver Skills Training to Improve Experiences of Care — a Randomized Clinical Trial (2019) — Van Houtven CH, et al. (VA)
• iSupport: a WHO global online intervention for informal caregivers of people with dementia (2019) — Pot AM, et al.
• Extended validation and classification of the BSFC-s (2018) — Pendergrass A, Malnis C, Graf U, Engel S, Graessel E
• A critical review of scoring options for clinical measurement tools (2015) — Avila ML, Stinson J, Kiss A, Brandão LR, Uleryk E, Feldman BM
• Development of the Carers’ Alert Thermometer (2015) — Knighting K et al.
• Factor structure and construct validity of ASCOT-Carer (2015) — Rand SE et al.
• Measuring the impact of caregiving on informal carers: CarerQol construct validation (2014) — Hoefman RJ et al.
• Subjective caregiver burden: validity of the 10-item BSFC-s (2014) — Graessel E, Berth H, Lichte T, Grau H
• The Caregiver Well-Being Scale: Developing a Short-Form Rapid Assessment Instrument (2013) — Tebb SC, Berg-Weger M, Rubio DM
• Alone Together: Why We Expect More from Technology and Less from Each Other (2011) — Turkle, S.
• Powerful Tools for Caregivers (2010) — Powerful Tools for Caregivers
• Targeting and managing behavioral symptoms in individuals with dementia: a randomized trial of a nonpharmacologic intervention (2010) — Laura N. Gitlin, Laraine Winter, Marie P. Dennis, Nancy Hodgson, and Walter W. Hauck
• NYU Caregiver Intervention: A Family Intervention to Delay Nursing Home Placement of Patients with Alzheimer Disease (2006) — Mittelman MS, et al.
• The Caregiver Well-Being Scale Revisited (2000) — Berg-Weger M, Rubio DM, Tebb SS

Academic literature (18)

• 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
• Modified Caregiver Strain Index (MCSI) (2013) — Thornton, M.; Travis, S.S.; Hartford Institute for Geriatric Nursing summary sheet
• 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 (19)

• 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
• iSupport for Dementia (2019) — World Health Organization
• Targeted Universalism Methodology (2019) — powell, john a., Menendian, S. & Ake, W. / Othering & Belonging Institute, UC Berkeley
• Accountable Health Communities Health-Related Social Needs Screening Tool (2017) — Centers for Medicare & Medicaid Services (CMS)
• 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 (81)

• ABLE Accounts and Trust Options for Structured Settlements (2026) — ABLE National Resource Center
• Aging Life Care Association: What is Aging Life Care? (2026) — Aging Life Care Association
• ALS United Greater New York (2026) — ALS United Greater New York
• Alzheimer's Association Help & Support (2026) — Alzheimer's Association
• American Cancer Society Support Programs and Services (2026) — American Cancer Society
• ARCH National Respite Locator and State Respite Contacts (2026) — ARCH National Respite Network & Resource Center
• Burden Scale for Family Caregivers – Short Version (2026) — University Hospital Erlangen
• Caregiver Action Network Help Desk and Resource Hub (2026) — Caregiver Action Network
• Carer Support Needs Assessment Tool Intervention (2026) — CSNAT-I team
• Eldercare Locator home (2026) — Administration for Community Living / Eldercare Locator
• Family Caregiver Alliance: Connecting Caregivers (2026) — Family Caregiver Alliance
• Finding Local Services (2026) — Administration for Community Living / LongTermCare.gov
• GC-SDOH Assessment Specification (2026) — GiveCare
• Legal Planning for Incapacity (2026) — Family Caregiver Alliance
• Meals on Wheels America: Find Meals and Services Near You (2026) — Meals on Wheels America
• Medicaid Home and Community-Based Services 1915(c) waivers (2026) — Centers for Medicare & Medicaid Services / Medicaid.gov
• Medicaid self-directed services (2026) — Centers for Medicare & Medicaid Services / Medicaid.gov
• Medicare caregiver training services (2026) — Centers for Medicare & Medicaid Services / Medicare.gov
• Medicare home health services (2026) — Centers for Medicare & Medicaid Services / Medicare.gov
• NAMI HelpLine and Family Caregiver Support (2026) — National Alliance on Mental Illness
• 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
• State and Territory Assistive Technology Program Directory (2026) — National Assistive Technology Act Technical Assistance and Training Center (AT3 Center)
• VA Caregiver Support Program (2026) — U.S. Department of Veterans Affairs
• Wandering and dementia (2026) — Alzheimer's Association
• What a Cancer Caregiver Does (2026) — American Cancer Society
• About Community Living (2025) — Administration for Community Living
• ALS Disability and Medicare Waiting Periods Waived (2025) — Social Security Administration
• Hospital Discharge Planning: A Guide for Families and Caregivers (2025) — Family Caregiver Alliance; Carol Levine
• Support for caregivers of cancer patients (2025) — National Cancer Institute
• Taking Care of YOU: Self-Care for Family Caregivers (2025) — Family Caregiver Alliance
• Taking care of yourself as a caregiver during advanced cancer (2025) — National Cancer Institute
• ALS United Greater New York Emergency Preparedness (2024) — ALS United Greater New York
• Caregiver Well-Being Scale – Shortened Version (2024) — University of Connecticut M3EWB Measures Repository
• Caregiver's Guide to Understanding Dementia Behaviors (2024) — Family Caregiver Alliance; Beth Logan, M.S.W.
• Caregiving Toolkit (2024) — National Institute on Aging (NIH)
• Supporting Veterans with ALS (2024) — National Academies of Sciences, Engineering, and Medicine
• Caregiving 101: On Being a Caregiver (2023) — Family Caregiver Alliance; Donna Schempp, LCSW
• Caregiving with Your Siblings (2023) — Family Caregiver Alliance; Francine Russo
• Hiring In-Home Help (2023) — Family Caregiver Alliance; Christine McGuinness
• Holding a Family Meeting (2023) — Family Caregiver Alliance; John Neville, MD
• Taking Care of YOU: Self-Care for Family Caregivers (2023) — Family Caregiver Alliance / National Center on Caregiving
• AARP HomeFit Guide (2022) — AARP
• All Resources (2022) — Family Caregiver Alliance
• ALS United Greater New York Care Services (2022) — ALS United Greater New York
• ALS United Greater New York Clinics and Centers (2022) — ALS United Greater New York
• ALS United Greater New York Equipment Loan Program (2022) — ALS United Greater New York
• ALS United Greater New York Support for Caregivers (2022) — ALS United Greater New York
• Communicating with Your Doctor (2022) — Family Caregiver Alliance
• Family Caregiver Services by State (2022) — Family Caregiver Alliance
• Medication Management Basics (2022) — Family Caregiver Alliance; Kathleen A. Cameron, R.Ph., M.P.H.; Ron Finley, R.Ph.
• Respite Tips: Taking a Break from Giving Care (2022) — Family Caregiver Alliance
• When Someone You Love Is Being Treated for Cancer: Support for Caregivers (2022) — National Cancer Institute
• 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
• A Guide to Taking Care of Yourself (2013) — Family Caregiver Alliance
• 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
• Before You Give Up the Keys: Create a Roadmap for Transportation Independence — Eldercare Locator; National Aging and Disability Transportation Center
• Care for Advanced Cancer
• Caring for Siblings of Kids With Disabilities
• Eldercare Locator: Face the Facts — Administration for Community Living / Eldercare Locator
• Families and Serious Illness
• Hospice Care
• Hospital Discharge: Successful Transition — Administration for Community Living / Eldercare Locator
• Medicare Path for People with ALS — Centers for Medicare & Medicaid Services
• Medicines: Managing the Impact of Medicine on Your Brain Health — Administration on Aging / Administration for Community Living
• National Alliance for Caregiving: Research, Policy, and Caregiver Resources — National Alliance for Caregiving
• New Jersey Resources for Families and Caregivers — State of New Jersey Disability Information Hub
• NIA Caregiver Worksheets — National Institute on Aging
• NY Connects: Long-Term Services and Supports — New York State Office for the Aging
• Palliative Care
• Take Care of Yourself as a Caregiver — National Institute on Aging
• The Caregiver's Handbook — National Institute on Aging

GiveCare reference notes (11)

• ADR-0001: Crisis Gate Ordering (2026) — GiveCare
• Data Agent SMS Runtime (Convex code) (2026) — GiveCare
• GiveCare Backend Specification (2026) — GiveCare
• GiveCare Benefits Corpus (2026) — GiveCare
• GiveCare Market Map (2026) — GiveCare
• GiveCare North Star (2026) — GiveCare
• InvisibleBench scan profiles — scripts/run_scan.py and LLMVerifier (2026) — Ali Madad
• InvisibleBench veteran caregiver staging scenario — eval_reddit_veterans_001 (2026) — Ali Madad
• SMS Journey Orchestration Contract (2026) — GiveCare
• SMS Mira Soul (2026) — GiveCare
• SMS Voice Guide (2026) — GiveCare

Other sources (5)

• 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)
• Social Determinants of Health Framework (2017) — National Academy of Medicine (NAM)