For most of us, caregiving is an entirely new, unplanned endeavor that is entered quickly, without much thought and research. Your dad has a stroke, your mom takes a fall, your spouse is diagnosed with a disease and suddenly, you’re a caregiver.
You start hearing words that you haven’t heard before and you don’t have time to figure out what it all means. Here are common terms thrown around in the caregiver universe and what they actually mean.
Activities of Daily Living (ADLs): Basic personal activities such as bathing, eating, dressing, transferring from bed to chair, and using the toilet.
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. They typically have meals and activities designed to engage attendees.
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: 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 is prepared prior to a person losing cognitive function and may include a Living Will, a Durable Power of Attorney for Health Care or both.
Ambulatory: Able to walk independently.
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, one meal a day, 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 are motorized wheelchairs, walking aids, elevated toilet seats, bathtub seats, and handrails.
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 or frailty attributed to old age or chronic illness.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Respite: Temporary or short-term care of a chronically ill person by another which is designed to give the caregiver a rest.
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.
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.
Vital Signs: Temperature, pulse, respiration, and blood pressure.
I hope this glossary will help your family better navigate the caregiving journey. If you haven’t had a chance, visit my resource page for links to common caregiver resources.