Caregiving Glossary — Plain-English Definitions

Activities of Daily Living (ADLs)

The basic self-care tasks — bathing, dressing, eating, using the toilet, transferring in and out of bed, and walking. Difficulty with ADLs is a key signal that additional help is needed.

Adult Day Services

Daytime programs for older adults who need supervision, social engagement, or health support but don’t need 24-hour care. Two main models: the social model focuses on activities, meals, and companionship; the medical model adds nursing oversight, therapy, and medication management.

Advance Directive

A written document stating a person’s preferences about medical care if they become unable to speak for themselves. Living wills and health care proxies are types of advance directives.

Aging in Place

Remaining in one’s own home as one ages, rather than moving to a residential care community, by adapting the home and bringing in support as needs grow. Most older adults prefer it; the feasibility depends on the home’s physical setup, the person’s health trajectory, and the availability of family or paid support.

When it matters: As soon as you start thinking about whether the current living situation can last. Earlier planning produces better options than late-stage scrambling. See also: Home Health Care, IADLs, Geriatric Care Manager.

Alzheimer’s Disease

The most common form of dementia. A progressive brain disorder that gradually destroys memory, reasoning, and eventually the ability to carry out basic tasks.

Area Agency on Aging (AAA)

Local public agencies that coordinate services for older adults, including information, referrals, meal programs, in-home services, and transportation. Find yours at eldercare.acl.gov (the federal Eldercare Locator).

Assisted Living

A residential community for older adults who need help with some daily activities — meals, medications, bathing — but do not need round-the-clock medical care.

Assistive Equipment

Devices that help an older adult function more safely or independently — grab bars, raised toilet seats, shower chairs, walkers, canes, reachers, and similar (also called ambulatory aids when referring to walkers, canes, and similar mobility supports). Often the cheapest, highest-impact safety intervention in a home.

Care Plan

A written document that describes a person’s care needs, who is responsible for what, and how care will be reviewed and updated. Good care plans are living documents, updated as needs change. Sometimes called a patient care plan or plan of care — same concept, different naming convention.

Care Coordinator

A professional — often a nurse, social worker, or geriatric care manager — who helps a patient or family navigate the health care system, coordinate services across providers, and plan for transitions of care (such as a hospital discharge). In hospital settings, the term is sometimes used interchangeably with discharge planner. In community-based care, a care coordinator may help manage ongoing home care, referrals, and family communication.

When it matters: Most families need to actively request a care coordinator; they don’t always arrive automatically. Especially important during a hospital discharge, when decisions are fast and the stakes of a poor transition are high. See also: Discharge Planner, Geriatric Care Manager.

Caregiver Burnout

Physical, emotional, and mental exhaustion that results from the sustained demands of caring for an aging or ill family member without adequate support or respite. Not a character flaw — a predictable consequence of a high-demand role managed largely alone. Signs include chronic sleep disruption, increasing resentment, physical symptoms, social withdrawal, and a persistent sense that you cannot continue.

When it matters: It tends to develop gradually, which is why it’s often not recognized until it’s severe. If you’re wondering whether you might be experiencing it, that’s already a signal worth paying attention to. See also: Respite Care, the Caregiver Wellbeing pillar.

CCRC (Continuing Care Retirement Community)

A community that offers a continuum of care in one place — independent living, assisted living, and skilled nursing — so a resident can move through levels of care without changing communities.

Chronic Illness

A health condition that is persistent, often progressive, and not expected to be cured — though it can typically be managed. Examples common in older adults include heart disease, type 2 diabetes, COPD, arthritis, and kidney disease. Chronic illness is distinct from acute illness (which is sudden and time-limited) and is the most common driver of increased care needs over time.

When it matters: Chronic illness doesn’t always cause a single dramatic crisis — it often creates a slow accumulation of care needs that sneak up on families. Understanding what your parent’s chronic conditions actually mean for functional decline helps with realistic planning. See also: ADLs, Care Plan, Geriatrician.

Cognitive Impairment

A measurable decline in memory, reasoning, attention, or judgment. Mild cognitive impairment (MCI) is a recognized clinical condition that may or may not progress to dementia.

Cognitive Reserve

A concept from neuroscience that Ron draws on in his book: the brain’s resilience and adaptability, built up over a lifetime through education, intellectually stimulating work, learning new skills, and active social engagement. Higher cognitive reserve is associated with later onset of dementia symptoms and better function in the presence of brain changes. It’s one of the reasons lifelong learning, social connection, and mental engagement matter for aging well.

When it matters: In conversations about an aging parent’s lifestyle, social engagement, and whether staying mentally active matters. Also relevant when a parent is newly diagnosed with mild cognitive impairment — cognitive reserve can affect the trajectory. See also: Alzheimer’s Disease, Dementia, Cognitive Impairment.

Companion Services

Non-medical, non-custodial home-based support — conversation, accompaniment to appointments, light household tasks, meal preparation — provided by a companion aide. Companion services are distinct from home health care (which requires a clinical license) and from custodial care (which covers personal hygiene and ADLs). Often the first type of outside help a family brings in.

When it matters: When a parent still manages basic self-care independently but is becoming socially isolated or needs someone present for safety during the day. Often lower cost and easier to arrange than more clinical care. See also: Home Health Care, Custodial Care, ADLs.

Core Four

The four legal documents I recommend every family have in place before a crisis: Health Care Proxy, Living Will, Durable Power of Attorney, and Last Will and Testament.

Custodial Care

Non-medical help with daily activities — bathing, dressing, eating, supervision. Medicare does not cover long-term custodial care.

Dementia

An umbrella term for a decline in cognitive function serious enough to interfere with daily life. Alzheimer’s is one form of dementia; there are others (vascular, Lewy body, frontotemporal).

Discharge Planner

A nurse or social worker at a hospital whose job is to arrange what happens when a patient leaves the hospital. Usually the most underused resource in a hospital stay — you may need to ask for one by name.

DNR (Do Not Resuscitate)

A written medical order instructing health care providers not to perform CPR if a patient’s heart stops or they stop breathing. A DNR is a specific medical order, distinct from a living will.

Durable Medical Equipment

Medical equipment intended for long-term use at home — hospital beds, wheelchairs, walkers, oxygen equipment. Often partially covered by Medicare.

Durable Power of Attorney

A legal document authorizing a trusted person to handle a parent’s finances if the parent is unable to. The “durable” means the authority remains in effect even if the parent loses capacity.

Elder Law Attorney

An attorney who specializes in legal issues affecting older adults and their families — estate planning, Medicaid planning, guardianship, long-term care, elder abuse.

Geriatric Care Manager

A trained professional (usually a nurse or social worker) who assesses an older adult’s needs, coordinates services, and supports the family through complex care decisions. Especially valuable for long-distance caregivers.

Geriatrician

A physician with specialized training in the medical care of older adults. Geriatricians focus on the interaction of multiple conditions, medication management, cognition, and functional decline — areas where general internists may be less specialized.

Guardianship / Conservatorship

A court-ordered legal arrangement in which one person is given authority to make decisions for another who has been found unable to make decisions for themselves. Usually a last resort when legal documents weren’t put in place in time.

Health Care Proxy

A legal document authorizing a trusted person to make medical decisions for the principal if the principal can’t. Also called a healthcare power of attorney in some states.

HIPAA Authorization

A signed form allowing a designated person to receive medical information about the patient. Without it, many providers will not share information even with close family.

Home Health Care

Medically supervised care delivered in the patient’s home — skilled nursing, physical therapy, occupational therapy. Often Medicare-covered for short periods after a hospital stay.

Hospice Care

Comfort-focused care for people whose illness is not expected to be cured — typically provided in the last months of life. Can be delivered at home, in a hospice facility, or in a nursing home.

IADLs (Instrumental Activities of Daily Living)

Daily tasks that support independent living but aren’t basic self-care — managing medications, cooking, housekeeping, handling finances, using transportation, using the phone.

Living Trust

A legal arrangement in which assets are placed into a trust during a person’s lifetime, with instructions for managing and distributing them. A revocable living trust can help avoid probate and keep affairs private; trust law varies by state.

Live-In Home Care

A home care arrangement in which a paid caregiver lives in the home, providing availability around the clock while typically having defined off-hours. Distinct from 24-hour care, where coverage is continuous across multiple shifts. Live-in arrangements can be cost-effective relative to agency shift care but require suitable sleeping accommodations in the home. Employment law varies by state.

When it matters: When a parent needs consistent overnight presence but continuous active care around the clock isn’t yet required. See also: Home Health Care, Custodial Care, Geriatric Care Manager.

Living Will

A written document stating a person’s preferences about end-of-life medical treatment. Works together with the Health Care Proxy.

Last Will and Testament

A legal document stating how a person wants their assets distributed after death and, if applicable, naming a guardian for minor children. One of the four legal documents in the Core Four. A will alone does not avoid probate — assets titled in the person’s name pass through court before distribution to heirs. A revocable living trust, used alongside a will, can help avoid probate for assets placed in the trust.

When it matters: Every adult needs one, regardless of the size of the estate. For aging parents, it’s the starting point for estate planning conversations. See also: Core Four, Living Trust, Probate, Elder Law Attorney.

Long-Term Care

Ongoing assistance — medical and non-medical — for someone who can no longer manage daily life independently. Includes in-home aides, adult day services, assisted living, memory care, and skilled nursing. Most long-term care is custodial, not medical.

Long-Term Care Insurance

A separate insurance product that covers custodial care Medicare doesn’t — in-home aides, assisted living, nursing homes. Best purchased in good health, typically in the 50s or 60s.

Medicaid

A federal-state needs-based program that is the largest funder of long-term care in the United States. Eligibility depends on income and assets.

Medicaid Look-Back

The period (typically five years) before a Medicaid application during which the applicant’s asset transfers are reviewed. Transfers inside the look-back can disqualify an applicant.

Medicare

Federal health insurance tied to age (65+) or certain disabilities. Covers medical care but not long-term custodial care. Has four parts: A (hospital), B (outpatient), C (Medicare Advantage), D (prescription drugs).

Medigap

Supplemental insurance policies that fill gaps in Medicare Parts A and B coverage.

Memory Care

A specialized form of assisted living designed for people with dementia — secured environments, specialty-trained staff, structured routines.

MOLST / POLST

Medical Orders for Life-Sustaining Treatment (or Physician Orders for Life-Sustaining Treatment, depending on the state). A medical order signed by a clinician that translates a patient’s end-of-life preferences into actionable instructions for first responders and hospital staff. More directive than a living will. Naming and recognition vary by state.

Palliative Care

Comfort-focused care that can be provided at any stage of a serious illness, alongside curative treatment. Not the same as hospice, which is end-of-life.

PERS (Personal Emergency Response System)

A wearable device (usually a pendant or wristband) that lets a person summon help at the press of a button.

Power of Attorney

A legal document authorizing one person to act on behalf of another in specified matters. A Durable Power of Attorney remains in effect if the principal becomes incapacitated, which is what makes it the relevant version for most caregiving situations.

Probate

The legal process through which a deceased person’s will is validated by a court, debts are paid, and assets are distributed to heirs. Probate can be time-consuming, costly, and — because court records are public — not private. A revocable living trust can help a family avoid probate for assets placed in the trust. A will alone does not avoid probate.

When it matters: When reviewing an aging parent’s estate planning documents, it’s worth asking an elder-law attorney whether a living trust makes sense for their situation. See also: Living Trust, Elder Law Attorney, Core Four.

Respite Care

Planned short-term care that gives the primary caregiver a break. Can be a few hours, overnight, or a multi-week stay. One of the most underused resources in caregiving.

SHIP (State Health Insurance Assistance Program)

Free, confidential Medicare counseling provided state by state. The best starting point for Medicare questions. Find your state’s SHIP at shiphelp.org.

Sibling Syndrome

Ron Roel’s term for the predictable family dynamic in which one sibling absorbs the primary caregiving responsibility while others disengage, critique from a distance, or revisit old grievances — creating conflict at precisely the moment families need to coordinate. The pattern is common enough that Ron named it. Recognizing it as a pattern (not a unique family failure) is often the first step toward addressing it productively.

When it matters: Early in the caregiving journey, before roles calcify. Proactive family conversations about who does what — before a crisis forces the issue — tend to produce better outcomes. See also: Planning Across Generations, the Caregiver Wellbeing pillar.

Skilled Nursing / Nursing Home

Residential care for people who need 24-hour medical supervision. The most intensive level of long-term care.

Sub-Acute Care

Short-term, medically complex care — typically in a skilled nursing facility — for patients recovering from hospitalization but not yet ready to go home.

VA Benefits / Aid & Attendance

Veterans and their surviving spouses may be eligible for benefits from the U.S. Department of Veterans Affairs that can help fund long-term care — including the Aid & Attendance benefit, which can provide several hundred to several thousand dollars per month toward in-home care, assisted living, or nursing home costs. Eligibility depends on service history, medical need, and financial circumstances. These benefits are underused because families don’t know they exist.

When it matters: If your aging parent served in the military, check VA eligibility before assuming all long-term care costs fall to the family or to Medicaid. A VA-accredited claims agent or elder-law attorney can help assess eligibility. See also: Long-Term Care Insurance, Medicaid.