Commonly Used Caregiving Terms
The following are simple definitions of some of the most common terms used in conjunction with family caregiving:
Activities of Daily Living (ADLs): Basic personal activities, which include bathing, eating, dressing, mobility, transferring from bed to chair, and using the toilet. ADLs are used to measure how dependent a person may be on assistance in performing any or all of these activities.
Acute Care: Care that is generally provided for a short period of time to treat a certain illness or condition. This type of care can include short-term hospital stays, doctor's visits, and surgery.
Acute Illness: Illness that is usually short-term and that often comes on quickly.
Acute Pain: Pain that has a known cause and occurs for a limited time.
Adult Care Home: Also called board and care home or group home, an adult care home is a residence that offers housing and personal care services, such as meals, supervision, and transportation for 3 to 16 residents.
Adult Day Care: Community-based care designed to meet the needs of impaired adults who, for their own safety and well-being, can no longer be left at home alone during the day.
Administration on Aging (AOA): An agency of the U.S. Department of Health and Human Services that is the focal point for older persons and their concerns at the federal level.
Advance Medical Directives: Prepared ahead of time, a health care advance directive is a written document that says how a person wants medical decisions to be made if he or she loses the ability to make these decisions. A health care advance directive may include a Living Will, a Durable Power of Attorney for Health Care or both.
Ambulatory: Able to walk about.
Ambulatory with Assistance: Able to get about with the aid of a cane, crutch, brace, wheelchair or walker.
Ambulatory Care: All types of health services that are provided on an outpatient basis, instead of services provided in the home or to persons in a clinical setting.
Area Agency on Aging (AAA): A nationwide network of state and local programs that help older people plan and care for their life-long needs.
Assessment: Activities performed by at least one professional (preferably a social worker and/or a nurse) to determine a person's current ability to function in six areas: physical health, mental health, social support, activities of daily living, environmental conditions, and financial situation.
Assisted Living Facility (ALF): Residences that provide a "home with services" and that emphasize residents' privacy and choice. Assisted living residence means any group housing and services program for two or more unrelated adults, that makes available, at a minimum, one meal a day and housekeeping services and provides personal care services to the residents. Settings in which services are delivered may include self-contained apartment units or single or shared room units with private or area baths.
Assistive Devices: A range of products designed to help seniors or people with disabilities lead more independent lives. Examples include motorized wheelchairs, walking aids, elevated toilet seats, bathtub seats, and handrails.
Autonomy: making independent decisions or choices.
Bereavement: The act of grieving someone's death.
Burnout: The feeling of becoming overly frustrated and negative experienced by some caregivers.
Burden: The impact or consequence of having the responsibility of caring for someone (most frequently with dementia).
Care Plan: A written action plan that contains the strategies for delivering care to address an individual's needs and problems.
Care Recipient: The person receiving care who typically has a condition such as Parkinson's disease, cancer, Alzheimer's disease, traumatic brain injury, AIDS, muscular dystrophy, paralysis, multiple sclerosis, frailty attributed to old age, or other chronic illness.
Caregiver: An adult who provides unpaid care for the physical and emotional needs of a family member or friend.
Certified: A long-term care facility, home health agency, or hospice agency that meets the requirements imposed by Medicare and Medicaid is said to be certified. Being certified is not the same as being accredited. Medicare, Medicaid and some long-term care insurance policies only cover care in a certified facility or provided by a certified agency.
Chronic Illness or Condition: An illness or other condition with one or more of the following characteristics: permanency, residual disability, requires rehabilitation training, or requires a long period of supervision, observation, or care. Typically, it is a disease or condition that lasts over a long period of time and cannot be cured; it is often associated with disability.
Chronic Pain: Pain that occurs for more than one month after healing of an injury, that occurs repeatedly over months, or that is due to a lesion that is not expected to heal.
Clinical Trials: Carefully planned and monitored experiments to test a new drug or treatment.
Codicil: A written amendment to a will.
Comprehensive: A full range of available services including various levels of nursing care, support therapies, psycho/social assessments, treatment and referral to appropriate resources.
Competence: Usually used in a legal sense, refers to a person's ability to understand information, make an informed choice based on the information and values, and communicate that decision.
Continence: The ability to maintain control of bowel and bladder function. Or, when unable to maintain control of these functions, the ability to perform associated personal hygiene (including caring for catheter or colostomy bag).
Continuing Care Retirement Community (CCRC): A retirement community that offers a broad range of services and levels of care based on what each resident needs over time. Sometimes called "life care," it can range from independent living in an apartment to assisted living to full-time care in a nursing home.
Continuum of Care: Encompasses the different care services considered necessary over the full course of an illness.
Co-Existing Illness: A medical condition or illness that occurs simultaneously with another and may complicate or obscure diagnosis or treatment of each.
Co-Payment: The specified portion that Medicare, health insurance, or a service program may require a person to pay toward his or her medical bills or services.
Covered Benefit or Service: A health service or item that is included in an insurance plan or policy, and that is paid for either partially or fully.
Covered Charge: Services or benefits for which a health plan makes either partial or full payment.
Cues: Both verbal and non-verbal prompts, instructions and gestures that assist persons in their daily living.
Custodial Care: Care to help individuals meet personal needs such as bathing, dressing, eating, and other non-medical care that most people do themselves, such as using eye drops. Medicare does not pay for custodial care and Medicaid pays very little.
Delirium: A disturbance of brain function that causes confusion and changes in alertness, attention, thinking and reasoning, memory, emotions, sleeping patterns and coordination. These symptoms may start suddenly, may be due to some type of medical problem, and may get worse or better multiple times.
Dehydration: Lack of adequate fluid in the body and a crucial factor in the health of older people.
Disorientation: Loss of one's bearings, loss of sense of familiarity with one's surroundings, or loss of one's bearings with respect to time, place and person.
Do-Not-Resuscitate (DNR) Orders: Instructions written by a doctor telling other healthcare providers not to try to restart a patient's heart, using cardiopulmonary resuscitation (CPR) or other related treatments, if his/her heart stops beating. Usually, DNR orders are written after a discussion between a doctor and the patient and/or family members.
Durable Power of Attorney for Health Care (DPOAHC): A legal document that specifies one or more individuals (called a health care proxy) designated to make medical decisions for a person if that person is incapacitated.
End-of-Life Care: Doctors and caregivers provide care to patients approaching the end of life that is focused on comfort, respect for decisions, support for the family, and treatments to help psychological and spiritual concerns.
Entitlement: Federal program (such as Social Security or unemployment benefits) that guarantees a certain level of benefits to those who meet requirements set by law.
Estate Planning: Thoughtful consideration and planning for an individual's future in the area of finances and property. In some cases, planning for health care decisions may begin at this time.
Extended Care: Short-term or temporary care in a hospital available for those awaiting permanent nursing home or less intense nursing care prior to returning home. The process of restoration of skills by a person who has had an illness or injury so as to regain maximum self-sufficiency and function in a normal or as near normal manner as possible.
Family Caregiver: Anyone who provides care without pay and who usually has personal ties to the care recipient. This person can provide full- or part-time help, and may live with the care recipient or separately.
Fiscal Intermediaries: Private insurance organizations under contract with the federal government to handle Medicare claims from hospitals, skilled nursing facilities and home health agencies (Part A).
Functional Status/Capabilities: The measurement (usually through a scale or instrument of assessment) of a person's abilities in activities of daily living or instrumental activities of daily living.
Guardian: A legal term for a person who is lawfully vested with the care of a person who has been judged legally incompetent and/or the care of the person's property.
Health Maintenance Organization (HMO): An organization that, for a prepaid fee, provides a comprehensive range of health maintenance and treatment services (including hospitalization, preventive care, diagnosis, and nursing). HMOs are sponsored by large employers, labor unions, medical schools, hospitals, medical clinics, and insurance companies.
Home Health Agency (HHA): A public or private agency certified by Medicare that specializes in providing skilled nurses, homemakers, home health aides, and therapeutic services such as physical therapy in an individual's home.
Home Health Care: Health services provided in the homes of the elderly, disabled, sick, or convalescent. The types of services provided include nursing care, social services, home health aide and homemaking services, and various rehabilitation therapies (e.g., speech, physical and occupational therapy).
Hospice: A special way of caring for people with terminal illnesses and their families by keeping the patient as comfortable as possible by relieving pain and other symptoms, preparing for a death that follows the wishes and needs of the patient, and reassuring both the patient and family members by helping them to understand and manage what is happening.
Hospice Home Care: Most hospice patients receive care while living in their homes. Home hospice patients have family members or friends who provide most of their care, with help and support from the trained hospice team, which visits the house to provide medical and nursing care, emotional support, counseling, information, instruction, and practical help.
Incontinence: The loss of bowel and bladder control.
Informed Consent: The process of making decisions about medical care that are based on open, honest communication between the health care provider and the patient and/or the patient's family members.
Infusion Therapy: Injection of a solution directly into a vein.
Instrumental Activities of Daily Living (IADLs): Personal tasks often performed by a caregiver, such as meal preparation, grocery shopping, making telephone calls, and money management.
Interim Care: Same as "Extended Care."
Intermediate Care: Assistance with activities of daily living plus rehabilitation services usually provided by licensed therapists and registered nurses as well as licensed practical nurses.
Intermittent Care: A requirement for services to be covered by Medicare; home health services given to a patient at least once every 60 days or as frequently as a few hours a day, several times per week.
Licensed Practical Nurse (LPN): One who has completed one or two years in a school of nursing or vocational training school. LPNs are in charge of nursing in the absence of a Registered Nurse (RN). LPNs often give medications and perform treatments. They are licensed by the state in which they work.
Live-In: A person who will live in the home of an individual requiring health care, to provide assistance to the individual.
Living Will: A legal document that outlines the kinds of medical care a patient wants and doesn't want. The living will is used only if the patient becomes unable to make decisions for him/herself.
Long-Term Care and Support: Refers to a broad and highly variable range of rehabilitative, restorative and health maintenance services that assist people with ADLs, IADLs and the emotional aspects of coping with illness or disability.
Medicaid: An assistance program through which the federal government and the individual states share in payment for the medical care of certain categories of needy and low-income people.
Medicare: A federal health insurance program for people 65 and over and some under 65 who are disabled. Medicare has two parts. Part A is also called Hospital Insurance, and Part B is called Medical Insurance.
Medigap Insurance: Sold by private insurance companies, this type of insurance is specifically designed to help pay health care expenses either not covered or not fully covered by Medicare.
Multi-Disciplinary Team/Interdisciplinary Team: A group of professionals with different skills and training who share information and consultation around a person's care.
Nursing Home: An institutional setting that offers 24-hour supervision and care to individuals, usually older persons, who are no longer able to be responsible for themselves in an independent living setting.
Nutrition/Hydration: Intravenous (IV) fluid and nutritional supplements given to patients who are unable to eat or drink by mouth, or those who are dehydrated or malnourished.
Ombudsman: A person who investigates complaints about long-term care facilities where older people live.
ORS (Occupational Rehabilitation Services): A program for persons under age 60 who are at risk of nursing home placement or who require information and assistance.
Palliative Care: The total care of patients with progressive, incurable illness. In palliative care, the focus of care is on quality of life. Control of pain and other physical symptoms, and psychological, social and spiritual problems are considered most important.
Personal Care: Activities, such as bathing, dressing, grooming, caring for hair/nails and oral hygiene, that are needed to facilitate treatment or to prevent deterioration of a person's health.
Pharmacotherapy: The treatment of diseases and symptoms with medications.
Prognosis: A prediction of the probable course of a disease in an individual and the chances of recovery.
Registered Nurse (RN): A graduate nurse who has completed a minimum of two years of education at an accredited school of nursing. RNs are licensed by the state in which they work.
Rehabilitation: The process of restoration of skills by a person who has had an illness or injury so as to regain maximum self-sufficiency and function in a normal or as near normal manner as possible.
Reimbursement: Financial repayment for costs incurred by individuals in the care of a loved one.
Respite: Temporary or short-term care of a chronically ill person by another which is designed to give the caregiver a rest.
Self Care: The ability to bathe, dress, toilet, and feed oneself.
Senility: Popularized laymen's term used by doctors and the public alike to categorize the mental deterioration that may occur with aging.
Senior Center: A community facility for senior citizens. Senior centers provide a variety of activities for their members, including any combination of recreational, educational, cultural, or social events. Also, some centers offer nutritious meals and limited health care services.
Skilled Care: Institutional care that is less intensive than hospital care in its nursing and medical service, but which includes procedures that require the training and skills of an RN for administration. Both Medicare and Medicaid reimburse for care at the skilled level if it is provided in a facility that has been certified as meeting the Skilled Nursing Facility (SNF) standards.
Skilled Nursing Facility (SNF): A facility that has been certified by Medicare and/or Medicaid to provide skilled care.
Social Security: A national insurance program that provides income to workers when they retire or are disabled and to dependent survivors when a worker dies. Retirement payments are based on worker's earnings during employment.
Social Worker: A person trained to identify social and emotional needs and provide services necessary to meet them.
Spend Down: Under the Medicaid program, a method by which an individual establishes Medicaid eligibility by reducing gross income through incurring medical expenses until net income (after medical expenses) meets Medicaid financial requirements.
Supplemental Security Income (SSI): A federal program that pays monthly checks to people in need who are 65 or older and to people in need at any age who are blind or disabled. The purpose of the program is to provide sufficient resources so the person can have a basic monthly income. Eligibility is based on income and assets.
Support Group: A formal gathering of persons sharing common interests and issues. The participants and facilitators share information and mutual support, and often exchange coping skills with one another.
Surrogate: A substitute who makes decisions for someone who is no longer capable of making decisions for him/herself. The surrogate may be appointed as guardian or conservator by a court or identified when the person is competent through a power of attorney process.
Therapy: A treatment or intervention intended to change an outcome or course of disease.
Third-Party Payment: Payment for care that is made by someone other than the patient or his/her family (for example, Medicare or a private insurance company).
Vital Signs: Temperature, pulse, respiration, and blood pressure.