As a family caregiver, you may be newly exposed to terms used by health care providers. This list attempts to offer a simple explanation for many of these terms. Where available, a link to more information is provided.
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Daily functions such as getting dressed, eating, taking a shower or bath, going to the bathroom, and getting into a bed or chair. The amount of help a person needs with ADLs is often used to assess whether he or she meets the requirements for long-term care services in a nursing home. See Instrumental Activities of Daily Living (IADLs).
Medical care for health problems that are new, quickly get worse, or result from a recent accident. Acute care is usually given in a hospital or its Emergency Department.
Written instructions to health care professionals about the amount and type of medical care and treatment a person wants. Advance directives are used when people are too ill or injured or are unable for other reasons to state these wishes for themselves.
There are two types of advance directives. One describes the type of care a person wants. The other names someone else (health care proxy or agent) to make medical choices if needed. Each state has its own laws. Learn more: Legal Forms and Finding an elder Law Attorney
Adult Day Care
Social and recreational activities offered in a group setting. Adult day care does not offer health services that require a nurse. Adult Day Health Care services are available in most communities. These programs provide social and recreational activities and health services to adults who are physically (body) or cognitively (mind) impaired. These take place in supervised and structured settings. See Respite
Adult Protective Services (APS)
State and local agencies that investigate (look into) reports of abuse or neglect. They also offer services to adults (18 years and older) who are physically, sexually, financially, or emotionally abused by someone involved in care. These abuses include neglect, exploitation, or abandonment. Referrals to APS can be done when either the person neglects him or herself, or when someone else neglects or abuses an adult person.
Alzheimer’s disease is a condition in which nerve cells in parts of the brain start to die. It is progressive, which means that mental and physical functions decline over time. Alzheimer’s disease is the most common (but not only) cause of dementia.
Medical care given in an outpatient setting (where the patient is not admitted to a facility). This is usually a doctor’s office or clinic, but may be a hospital. It includes diagnosis, observation (watching), treatment, and rehabilitation. The term comes from the word “ambulation” (walking), even though many patients who cannot walk are treated in ambulatory care settings.
A way to dispute (disagree with) a health care facility decision to an independent agency called a Beneficiary and Family Centered Care-Quality Improvement Organization (BFCC-QIO). Often, appeals are about decisions to discharge patients. There are strict rules and deadlines to follow. If the BFCC-QIO denies the appeal (that is, if it decides that the facility’s discharge decision was right), the patient or family member must pay for care given while the appeal was reviewed. To find the BFCC-QIO in your state, go to here.
Area Agency on Aging (AAA)
Agency that gets state and federal funding to plan and coordinate services for people over age 60 within a local area. In some cities, towns and states, the AAA is also known as the Department for the Aging. AAAs offer programs such as National Family Caregiver Support Programs. To find the AAA in Texas visit: https://apps.hhs.texas.gov/contact/aaa.cfm or call 800-252-9240 OR visit the national Eldercare Locater website: https://eldercare.acl.gov/Public/Index.aspx
Assisted Living or Assisted Living Facility (ALF)
A residence for people who do not want to, or cannot, live independently (on their own) but do not need nursing home care. ALFs offer different kinds and levels of services, including social activities, supervision, and some health care services (but not as many as in a nursing home). ALFs are privately owned and prices vary. Learn more: Housing Options for Older Adults.
Tools or special equipment (“adaptive equipment” or “independent living aids”) that help older or disabled people perform ADLs and other tasks. These tools include telephones with enhanced amplification (for those who are hard of hearing), special kitchen supplies, computer programs, and other types of technology. Learn more about Assistive Devices.
Senior doctor at a teaching hospital. This doctor is often in charge of (responsible for) a patient’s care. The attending doctor supervises fellows (postgraduate doctors in a specialty), residents (house staff or doctors-in-training), and medical students.
Legal term for someone granted Power of Attorney (POA).
Bed Hold Policy
A term used in skilled nursing facilities to define the length of time the facility will hold a patient’s bed in case he or she has to leave the facility for care elsewhere, such as hospital, or for any other reason. There is a fee for holding a bed, and each facility has its own policies and fees. If a patient has to leave the facility and did not secure a bed hold, there is no guarantee that he or she will be able to return to that facility for continuation of care and treatment.
Pressure or “bed” sores are wounds that occur when a patient is not moved frequently in bed or wheelchair. The medical term is “decubiti” (de-CUBE-it-eye). They are graded from Stage I through IV, with IV being the most serious.
Person who is entitled to receive services from a health insurance plan or program. Example: “Medicare beneficiaries” are people who have insurance coverage through Medicare.
In health care settings, “capacity” refers to a patient’s ability to understand and use medical information (such as treatment options, risks, and benefits) when making decision and choices about medical care. Capacity varies; a person may have the capacity to make some choices, but not others. A “health care proxy” can act as the patient’s decision maker if the patient loses capacity due to illness or injury. Capacity is different from competence; only a judge can declare someone incompetent (unable to make decisions for themselves).
Care or Case Manager
Nurse, social worker, or other health care worker who plans and coordinates services for a patient’s care. This person usually works for an agency, facility, or insurance plan. Also see geriatric care manager.
Doctors, nurses, social workers, and home health aides may use the term “caregiver” when talking about themselves. “Caregiver” can also mean family members, friends, and neighbors who provide ongoing help and assistance to people who are ill, frail, or disabled. Other terms include family caregiver, informal caregiver, formal caregiver, and carer (UK, Canada, Australia).
Way to gather information to determine what level and kind of care a family caregiver is able to provide. It assesses the caregiver’s own health and other responsibilities, resources and strengths (such as experience or special skills) as well as what he or she is willing and able to do. It also considers the caregiver’s own need for support and/or other services. Learn more: How to Ask for Help as a Caregiver
Caregiver Support Group
A group of people who meet regularly to help each other by discussing feelings, common problems, ways of coping, available resources, and many other issues related to caregiving. Support groups may be for caregivers of patients who have certain diseases (such as cancer or Alzheimer’s Disease). They can also be for certain types of caregivers (such as spouses or adult children). Some support groups meet in person while others are only online or by telephone. Groups differ in style as well; some are ongoing while others are for a set number of sessions, some are more informational, while others are more emotionally supportive. A growing trend are social “caregiver cafés” for both caregiver and care recipient. Search for Support Groups in North Central Texas.
A detailed written plan that includes needed tasks for patient care. It likely includes services provided by nurses, therapists, home health aides, and attendants. A good care plan should also list the tasks that family caregivers (who often do many of the tasks) do.
Certified Nursing Assistant (CNA)
Person trained and certified to assist patients with non-clinical tasks such as eating, walking, and personal care (like taking a bath). This person may be called a “nursing assistant” in the hospital. Also see home health aide.
Physical or mental disability that lasts a long time or recurs (goes and comes back again). Treatment goals are to manage the illness and its symptoms, not cure them.
Physical changes in the brain that affect how clearly a person thinks, makes decisions, learns new tasks, or remembers events that just happened or from long ago. Often referred to as dementia. There are many causes of cognitive impairments, such as traumatic brain injury, stroke, transient ischemic attacks (TIAs), Alzheimer’s disease, Lewy Body disease, low vitamin B-12, fronto-temporal degeneration, and depression. Evaluation by medical professionals is important. Depending on the cause, cognitive impairments can be progressive or steady-state, compensated for through rehabilitative therapy, or, in some cases, reduced or corrected. Medical treatment and non-medical management of cognitive impairments can also vary widely depending on the cause. Learn more: Alzheimer’s & Dementia FAQs
An order (signed by a doctor) that says that the patient should not be resuscitated (given Cardiopulmonary Resuscitation, or CPR to restart a heart beat) if he or she is at home when the heart stops beating. If emergency services are called, this order must be given to the medical team. Also see DNR.
A legal term meaning that a person is able to make decisions for themselves. To do that, he or she has to be an adult (18 years of age or older) and have capacity, which means the ability to understand and use information when making decisions. A judge is the only one who can declare a person “incompetent” (lacking the ability to make decisions). This happens in a guardianship hearing.
Also called personal care or personal assistance. It is the kind of help or supervision people need with daily tasks such as getting dressed, eating, taking a shower or bath, going to the bathroom, and getting into a bed or chair. Custodial care may be given at home by family members or by home care aides or personal care attendants. This care is not paid for by insurance unless the patient also needs skilled care from a nurse or therapist.
An umbrella term for types of loss of brain function that disrupts or impairs a person’s memory, ability to think or speak clearly, and ability to perform everyday tasks, caused by physical changes in the brain. It can also affect a person’s personality, mood, social interaction (how he or she relates to others), and judgment. See also cognitive impairment. Learn more: Alzheimer’s & Dementia FAQs
Nurse, social worker, or other health care worker who coordinates a patient’s transition (move) from one care setting to the next, such as from hospital to home.
Items used just once and then replaced. Supplies used for medical treatment, such as syringes and bandages for wound care, are generally covered by insurance. Supplies for incontinence (such as adult diapers and bed protectors) are usually not covered by insurance, but may be covered by Medicaid in some states.
Do Not Intubate (DNI) Order
A DNI order instructs health care workers not to insert a breathing tube through the patient’s nose or mouth into the throat once breathing has stopped. A DNI order is part of an advance directive and is separate from a DNR order.
A DNR order instructs health care workers not to perform cardiopulmonary resuscitation (CPR) or other actions to restart a person’s heart or breathing once it has stopped. By law, a DNR order must be offered to patients and families. Signed DNRs must be part of the patient’s medical chart. A DNR order is part of an advance directive and is separate from a DNI order. Also see Community DNR.
People who financially and medically qualify (meet the requirements) for both Medicare and Medicaid. Some states have programs (such as PACE — Program of All-Inclusive Care for the Elderly) for people who are dual eligibles and also meet other requirements.
Durable Medical Equipment (DME)
Medical equipment that can be used more than once. It includes crutches, knee braces, wheelchairs, hospital beds, and prostheses. In order for DMEs to be paid for (at least in part) by Medicare or other insurance, they must be ordered by a doctor.
A type of advance directive. It names a person to make health care choices for someone else if he or she becomes incompetent or cannot express wishes. Learn more: Legal Forms and Finding an elder Law Attorney
A document which names a person who can make financial (money) decisions on behalf of someone else. This power of attorney remains in effect, even when a person is disabled or incapacitated. Durable power of attorney covers financial (money) matters, not medical decisions. Learn more: Legal Forms and Finding an elder Law Attorney
Elder Law Attorney
A lawyer who specializes in the rights and issues of older adults and their health, finances, and well-being. Some states have certification for elder law attorneys. Learn more: National Academy of Elder Law Attorneys.
Any family member, partner, friend, or neighbor who provides or manages the care of someone who is ill, disabled, or frail. There may be more than one family caregiver involved in a person’s care. Sometimes family caregivers are referred to as informal caregivers. This is meant to show that they are different from formal caregivers (paid health care workers). But many caregivers do not like the term “informal” because it implies less skill and commitment. In the UK, Canada, and Australia, family caregivers are known as carers.
Family Caregiver Support Program (FCSP)
A Federal program (run by the U.S. Administration on Aging) that offers support services to family caregivers of people who are: 60 years and older; adults of any age with dementia; grandparents 55 years and older caring for grandchildren under age 18 or adults with developmental disabilities aged 19 to 59. Services include counseling, information and referral, respite, and some funding for certain home modifications or emergency response systems. Each FCSP is under the direction of its local Area Agency on Aging (AAA).
Some use this term to refer to paid caregivers (professional or paraprofessional).
A list of medications covered by a health plan, insurance company, or provided in a hospital. Not all medications are included in each organization’s formulary. Coverage can be at different rates (costs to the patient) for different medications, especially between “brand name” medications and “generics.”
Friendly Visitor Program
Local groups may offer Friendly Visitor Programs in which volunteers visit or call older adults and those who are disabled. These programs check safety and offer ways for older adults to socialize (be with others).
A medical doctor with special training in the diagnosis, treatment, and prevention of disabilities in older adults.
A person with a background in nursing, social work, psychology, gerontology, or other human services field who has knowledge about the needs of, and services available for older adults. A geriatric care manager coordinates (plans) and monitors (watches over) a person’s care. He or she also keeps in contact with family members about the person’s needs. Most geriatric care managers are privately paid (by the family, not insurance).
A health care professional trained to work with older adults and their families. He or she may have an MS or PhD degree.
A legal term for someone named by a judge to manage a person’s financial (money) and personal affairs. This takes effect only after a court finds that the person is not competent to do this alone.
The process in which the guardian gets named. The process may take a long time and is often complex and costly.
Health Insurance Portability and Accountability Act (HIPAA) is a federal law designed to protect private medical information from unauthorized users (people who should not see this information, such as employers or marketers). HIPAA requires health care providers to keep this information safe and secure. The law does not prevent providers from sharing needed information with family caregivers.
Home-delivered Meals (Meals on Wheels)
Meals brought to people who cannot prepare their own meals or are homebound (cannot leave their homes).
A person trained to provide basic health care tasks for those who are elderly or disabled. Tasks include taking vital signs (such as heart rate and blood pressure) or helping with “dry dressing” for wounds. Tasks may also include personal care, light housecleaning, cooking, grocery shopping, laundry, and transportation.
Services given to patients at home by registered nurses, licensed practical nurses, rehabilitation therapists, home health aides, or other trained workers. Insurance plans have guidelines for which home care services they will cover, under what circumstances (the patient’s medical needs), and for how long. Certified home health agencies often provide and coordinate these services.
A program of medical and social services for people diagnosed with terminal (end-stage) illnesses. Hospice services can be given at home, in a hospital, hospice residence, or nursing home. They are designed to help both the patient and his or her family. Hospice care stresses pain control and symptom management. It also offers emotional (feelings) and spiritual (faith) support. Medicare will pay for hospice if a doctor states that a person probably has 6 months or less to live. Hospice care can last longer than six months in some cases.
Loss of bladder (urine) or bowel movement control.
Legal term meaning that a person with mental capacity has given permission for medical treatment. Consent comes after a full disclosure (talk) of treatment risks and options.
Tasks a person usually performs when he or she is able to live independently (without help). These include grocery shopping, cooking, using the telephone, paying bills, doing laundry, and taking medications as ordered. These tasks are in addition to ADLs.
A doctor who has finished medical school and likely in the first year of special training. Interns are supervised by attending doctors and residents.
A type of advance directive that outlines a person’s treatment wishes if he or she is too ill or injured to make such choices. Laws about living wills vary from state to state. Learn more: Legal Forms and Finding an Elder Law Attorney.
Licensed Practical Nurse (LPN)
Health care workers who provide basic bedside care such as checking vital signs (temperature, blood pressure, and pulse). LPNs can also prepare and give injections and enemas, monitor catheters, apply wound dressings, treat bedsores, and give alcohol rubs or massages. LPNs report to registered nurses and doctors.
Long-Term Care (LTC)
A term used to describe the care needed by someone who must depend on others for help with daily needs. LTC is designed to help people with chronic health problems or dementia live as independently as possible. While many people think that long-term care happens only in a nursing home, in fact most long-term care is given by family caregivers in the patient’s home.
Long-Term Care Insurance
Private insurance designed to cover (pay for) long-term care expenses at home or in a facility other than a hospital. Each plan has a different range of benefits (services they pay for). Medicare, Medicare supplemental insurance (Medigap), and “regular” health insurance do not pay for this type of care.
Managed Care Plans
A type of health insurance plan. Two types are Health Maintenance Organizations (HMOs) and Medicare Advantage plans. Managed Care Plans offer incentives, such as lower co-pays, to beneficiaries (also called “covered lives”) for using medical facilities, medical services, and health care providers with whom they have contracted for reduced costs (“in-network” services). The medication formulary for the Managed Care Plan may be different from other plans offered by the same insurance company.
Health insurance program for people with low incomes. Medicaid is financed by both the federal and state government. States set their own rules about who can get Medicaid and what services it covers (pays for). Medicaid often pays for long-term care services, which Medicare and standard health insurance plans do not cover.
A federal health insurance program for people aged 65 or older, or for those aged 64 or younger who have certain disabilities. You can learn more about Medicare terms by visiting the Department of Health & Human Services’ Medicare Glossary.
A process used to compare all the medications a patient was taking when admitted to the hospital (or other health care setting) with medications he or she must take after discharge. Medications include prescriptions as well as herbs and over-the-counter drugs (such as aspirin). This process is to confirm what medications the patient is (and is not) taking, which can affect diagnosis and treatment.
NORC (Naturally Occurring Retirement Community)
An area, neighborhood, or building where a large concentration of residents have “aged in place” and are now elderly. A NORC may offer services to those elderly residents with the aim of keeping them in their homes. For more details, please see NORC Blueprint.
Nurse Practitioner (NP)
A registered nurse with advanced training and experience. NPs can diagnose and manage most common, and many chronic, illnesses. They do so alone or along with a health care team. NPs can prescribe medications and provide some services that used to be done only by doctors.
Nursing Home or Skilled Nursing Facility (SNF)
Facility that provides 24-hour care (all day and night) to people who are seriously or chronically ill or otherwise disabled. People who live in SNFs are often referred to as “residents.” Residents must be unable to care for themselves in other settings or need extensive (a lot of) medical care. Often SNFs serve as rehabilitation centers for short-term therapy (“subacute care”) after an illness or injury. Learn more: Housing Options for Older Adults.
The Outcome and Assessment Information Set (OASIS) is a series of questions about a home care patient to determine needs and measure outcomes. Medicare requires a home health agency to fill out this survey when opening a case for an adult patient, when there is a significant change in condition, when a patient is transferred to a hospital, when (if) the patient returns home, or when the patient dies or is discharged from the agency services. The questions cover many aspects of the patient’s diagnosis, clinical condition, living arrangements, and ability to manage on his or her own. A few questions concern the “primary caregiver” – who that person is, how often the patient receives care from that person, and what kinds of care are provided. Because a patient may not be able to give all the answers or may be unwilling to reveal how much help he or she needs, it is a good idea for the family caregiver to be present at this initial evaluation.
Occupational Therapist (OT)
Licensed health care professional who helps patients learn again how to do Activities of Daily Living (ADLs). OTs can also help plan ways to adapt (change) a person’s home so he or she can be as independent (do tasks alone) as possible.
Care that focuses on the relief of pain, symptoms, and stress of serious illness. The goal is to improve quality of life for patients and families. Palliative care is appropriate at any point in an illness, not just end-of-life care, and it can include treatments that are intended to cure as well as comfort. Palliative care is given by trained workers in a hospital, home, nursing home, or hospice.
Special transportation for people with mobility (walking) problems. It may be a taxi or special van. Sometimes paratransit runs on a fixed schedule (as for shopping). Other times, people must call to make a reservation.
A way to gather patient information for the purpose of assessing functional needs (what tasks people need help with) and eligibility for services (what services they can get). Information may include health status, financial (money) status, ability to perform ADLs and IADLs, mental status, and living situation. There are different types of patient assessments, including OASIS and MDS.
Patient Bill of Rights
Listing of ways a health care facility will treat patients with dignity and respect. It includes how patients can fully participate (take part) in making health care choices. To learn more, visit the American Hospital Association’s A Patient’s Bill of Rights.
Personal Emergency Response System (PERS)
Electronic device that allows a person to call for emergency help at home. The device connects to the patient’s phone and is programmed to signal a response center when the “help” button is pressed. The patient may also wear a “help” button as a necklace or bracelet. This allows the person to move freely around his or her home. There is typically a monthly charge. Many companies offer PERS services, and some local hospitals and Area Agencies on Aging have reduced rates.
Physician Assistant (PA)
A health care professional trained and licensed to perform medical tasks and write prescriptions under the supervision of a doctor. Each state has its own licensing procedure.
Physical Therapist (PT)
Licensed professional trained to treat people with impaired motor function (such as problems walking). PTs use exercise, massage, and other ways to help improve a person’s function and strength.
Legal term that allows one person to act as someone else’s attorney (lawyer) or agent. POA can be just for certain specific responsibilities or it can be for more broad issues having to do with financial (money) affairs. Learn more: Legal Forms and Finding an Elder Law Attorney.
Primary Care Provider (PCP)
This term almost always refers to doctors, nurse practitioners, or physician assistants who provide preventive care (before people are sick). PCPs diagnose and treat common medical problems, assess how urgent these problems are, and may refer patients to other specialists if needed. PCPs practice in the community, not a hospital or other health care facility. Often they are General Practitioners (GPs), Internists (doctors specializing in internal medicine), or geriatricians (doctors specializing in geriatric medicine).
Often used to describe a person or agency that delivers health care or social services. Providers can be individuals (doctors, nurses, social workers, and others) or facilities (hospitals), or agencies (home care), or businesses that sell services or equipment.
Registered Nurse (RN)
A person who has graduated from a formal nursing education program and is licensed to practice by the state board. RNs assess, plan, implement (carry out), and evaluate patient’s nursing care along with the rest of the health care team.
Services to help people get back their mental (thinking and feeling) and physical (body) functions lost due to injury or illness. Rehabilitation may be given at the hospital or in a nursing home, special facility, or the patient’s home.
A person who lives in a long-term care setting (such as a nursing home).
A medical doctor who has finished medical school and internship and now is being trained in a specialty (such as surgery, internal medicine, or geriatrics).
Temporary (a few hours or up to a few days) care to offer relief for the family caregiver. Respite care may be given in the patient’s home or the patient may have a short stay somewhere else. It can be scheduled regularly (for example, two hours a week) or provided only when needed. Learn more: Respite Care
The level of function (ability to move or do activities of daily living) that a patient is likely to regain, based on the patient’s condition and diagnoses. This is used by Medicare and other insurances to determine rehabilitative needs.
Centers that provide services to senior citizens, aged 60 and over. They may offer social activities (like music or crafts), meals, health screenings (such as blood pressure checks), learning programs, and exercise classes.
Nursing care given in a patient’s home or in a facility. It may include injections (shots), tube feeding, and changing sterile wound dressings. Most insurance plans require patients to need at least some skilled care before they can get other home care services.
Social Adult Day Services
Social and recreational activities offered in a group setting. Clients (people who attend these programs) often need help with safety and ADLs, but not much medical attention.
Licensed health care professional who diagnoses and treats people with speech, language, or hearing problems.
State Health Insurance Program (SHIP)
State program that helps older adults with concerns about insurance, benefits, and claims.
Care or monitoring (watching) after a hospital stay. This can be in a less intensive setting (such as a skilled nursing facility) or in a special unit in a hospital. Subacute care is usually short-term.
Surrogate Decision Maker
Telephone Reassurance Program
Service to provide “reassurance calls” that check on the safety and well-being of older adults at home. These calls can also offer reminders (such as when to take medication). Telephone reassurance programs can be a purchased service or, in some areas, may be offered by the local police, ambulance service, or your local area agency on aging.
A move from one care setting (hospital, nursing home, or home) to another. Care during transitions involves coordination and communication among patient, providers, and family caregivers.
A machine that pushes air into the lungs through a breathing tube inserted into the patient’s throat. Also called a respirator or “vent.”
A term often used for a nurse who visits patients in their homes. The job of a visiting nurse includes checking vital signs (such as heart rate and blood pressure) and physical health. The visiting nurse follows a doctor’s treatment plan. Visit the Visiting Nurse Association of Texas. Also see home health care.
Legal written document stating what a person wishes to be done with his or her belongings (property) and assets (money) after death. Learn more: Legal Forms and Finding an Elder Law Attorney.
We hope this information is helpful to you in the important work you do as a family caregiver.
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