What Does It Mean: A Glossary of Family Caregiver Terms

WHAT DOES IT MEAN? A Glossary of Important Family Caregiving Terms

A CGR Caregiving Basic Tool 

Click here to download the glossary pdf

Knowing what the words mean leads to finding solutions.

One of the greatest challenges faced by family caregivers and professionals who provide care-related services is being sure that they understand each other.  

Knowing and sharing an understanding of what words mean ensures that family caregivers, the people they are caring for, family members, doctors, nurses, lawyers, financial advisors, paid care workers, and all the other people involved are more likely to share an understanding of how appropriate, effective care is to be provided.  Without that shared understanding questions will not be understood, answers will not be useful, instructions will not be followed, and decisions will not be made that ensure quality caregiving. 

Family caregiving involves legal, financial, medical, personal, cultural, and an unlimited number of other issues.  Creating a single glossary that contains all terms that might be used would be an unending and overwhelming task.  This glossary includes many, but not all of the terms an unpaid family caregiver or caregiving professional may encounter.  Each term has been assigned a primary category, such as “Legal” or “Medical”, but may be used in a variety of settings.  Detailed explanations of these terms can be found in “CGR Care Guides”, which provide detailed information on a wide range of topics and explain how terms are used and why knowing their meanings is important.  In addition, if you need a definition and do not find it here, visit www.CareGiverReality.com, click on the “Contact” tab, and send a message requesting a definition.  

With the exception of selected brief descriptions (e.g., a definition of dementia), information on medical conditions (e.g., Parkinson’s disease, Alzheimer’s, coronary artery disease), treatment, government benefit programs, and many other topics is not provided in this glossary.  Brief descriptions are not adequate to address the complexities and concerns related to illnesses, chronic conditions, and so forth.  If you do not find a definition here, visit trusted websites (e.g., Alzheimer’s Association, the Harvard Medical School site at www.health.harvard.edu) or go to CareGiverReality.com and check out CGR information guides or go to the contact page and ask your question.

Copyright (c) 2020, Brenda Kaye Bryant

1996 Pension Law Legal Enacted in January 1997.  The stipulations this law included broadened the number of workers able to save for retirement by expanding eligibility for participation in pension plans and lowering vesting requirements. The law also allows non-working spouses to set aside $2,000 in an IRA each year, and creates a system to provide mini-pension plans for employees of small businesses.  Note:  ALWAYS verify current laws regarding retirement plans before attempting to provide guidance on this topic.
Activities of Daily Living Clinical ADLs.  Activities that make up the daily routine of life, such as bathing, dressing, controlling voluntary body functions, maintaining a reasonable level of personal care, eating, toileting, transferring (e.g., moving from a chair to a bed).
ADLs Clinical Activities of Daily Living (see definition)
Adult Day Care/Adult Day Health Care Home Care Adult Day Care (ADC) is a structured program of care and social activities provided for adult who are able to leave home but who require supervision and assistance with ADLs.  

     Adult Day Health Care (ADHC) is an ADC that includes medical supervision and assistance, such as giving medication (rather than observing self administration), health monitoring, and related special services.

     Some ADCs and ADHCs provide dementia-specific care and are, in theory, staffed by individuals who have special training and experience in working with individuals with various forms of dementia.  

     Dementia-specific programs are more and more common and typically operate under special regulations that address the demands of dementia care, depending on the state in which the service is provided.  Staffing levels, for example, may require that a staff person be provided for every 4 patients (as opposed to a staff person for every 8 patients in an ADC in which dementia care is not specifically provided).

     Meals and transportation are usually included (and often required under state law), although some programs may charge additional fees for special diets, etc.  Fees vary widely depending on services provided and may be covered in whole or in part by insurance policies and/or state-administered funding for those who qualify. 

     Regulations governing ADC/ADHC/Dementia-Specific programs specify hours of service, staffing, qualifications of staff including type and length of training, licensing, what services can or must be provided, and so forth.  Before selecting an adult day care program, users should be informed of such regulations and typically can inquire from licensing agencies whether a particular provider is properly licensed and whether inspections have indicated poor performances.

Advance Directive Legal In 1991 the federal government passed a law allowing for the documents known as a living will or health care power of attorney, which are called Advance Directives. 

     An Advance Directive is a statement of an individual’s health care treatment choices. They are called Advance Directives (also called “health care durable power of attorney” and “living will“) because they are issued in advance of the time that the decisions must be made. 

     Under federal law and state laws (and according to medical ethics), everyone has the right to accept or refuse medical treatment.  However, a person may experience an injury or an illness that leaves him/her unable to accept or refuse treatments or make other medical decisions.  To ensure that his or her wishes related to health care are followed in such circumstances, the individual can prepare an Advance Directive — a legally binding document that sets out the kinds of health care a person wants to receive and the designation of a health care surrogate to make decisions based on instructions in that document.  “Do Not Resuscitate” orders are also a kind of Advance Directive, although most of the time they are prepared as a separate medical directive.  (Note:  An advance directive (health care surrogacy power of attorney) may incorporate DNR instructions but the state or a facility may require the execution of an actual DNR form.)

     Having such a document is important because in its absence decisions about the kind of health care provided or withheld will be made solely by medical professionals within the regulations dictated by an individual state.  For example, a patient with a long-term illness that is progressively debilitating may have verbally stated to family members that he/she does not want to be resuscitated if he/she is not breathing.  However, in the absence of a written Advance Directive and/or a “Do Not Resuscitate” order, in some states a rescue squad member MUST resuscitate even when informed by a family caregiver that the person did not wish to be resuscitated.

     An Advance Directive authorizes a designated person (usually called an agent, surrogate, or healthcare surrogate) to make decisions about medical care when an individual is unable or does not want to make those decisions for him or herself.  For example, when a person is taken to a hospital in a coma, the presence of the Advance Directive will make his or her treatment wishes known. The person named as a surrogate decision maker will act on the individual’s behalf during all planning and treatment meetings of the team of healthcare providers. 

     This document may be revoked at any time by the individual (patient) who initiated it as long as he or she is competent.  On the death of the individual, the document is no longer valid and the agent no longer has any authority.

     Both the individual authorizing a surrogacy and the designated agent for the person should keep copies of the document with an original signature in a safe place where family caregivers family can get to them. Also, copies should be given to one’s health care professionals, lawyers, clergy, and other family members who might need such information. If these documents should be canceled or revoked, it is important to notify the people who have received copies.

Advantage Plan Service Advantage plans are insurance plans offered by private insurers who have a contract with Medicare to pay benefits for individuals covered under Medicare Part A (Hospital Insurance) and Part B (Medical Insurance).  Advantage Plans are also called Medicare Part C.  Most advantage plans include prescription drug coverage (Medicare Part D).  All plans include preventive care and some plans include additional benefits (e.g., dental coverage), but plans vary and benefits may be limited and require a copay.   Prescription drug coverage is an especially important part of advantage plans, specifying in detail which drugs are covered, payment differences based on whether the drugs are generic or name-brand, co-pays, and other limitations.  Premiums are typically subtracted from an individual’s Social Security payments (or paid through some other means by the client).

     Note:  As of 2021, some plans (based on zip codes in areas of low income, for example) have a full or partial “premium rebate” provision — that is, the actual fee for the medical insurance that is normally subtracted from a Social Security check is rebated back into the client’s Social Security check (which really means that for the client the service is either free or provided at a. lower cost).

Alpha Caregiver Caregiver A family member (unpaid family caregiver or UFC) or other unpaid caregiver acting in the role of family caregiver making final family caregiving decision, regardless of who does the daily care.  See also, “Family Caregiver”,  “Long Distance Caregiver”, “Paid Care Worker”, and “Primary Caregiver.”
Area Agency on Aging Service Area Agencies on Aging (AAAs) were established under the Older Americans Act (OAA) in 1973 to respond to the needs of Americans 60 and over in every local community.  AAAs coordinate a range of options that allow older adults to access home and community-based services and living arrangements that suit them best, making it possible for older adults to “age in place” in their homes and communities.  At the same time, AAAs are charged with ensuring equitable and appropriate use of OAA funds (and other sources of funding as designated by the state).  

     Title VI, Grants for Indian Tribal Organizations, was included in the 1978 Amendments to the OAA in order to ensure delivery of aging programs providing nutrition, supportive and caregiver services to older American Indians, Alaska Natives and Native Hawaiians.

      An Area Agency on Aging (AAA) is a public or private non-profit agency, designated by the state to address the needs and concerns of all older persons at regional and local levels. “Area Agency on Aging” is a generic term—specific names of local AAAs may vary. AAAs are primarily responsible for a geographic area, also known as a PSA, that is either a city, a single county, or a multi-county district. AAAs may be categorized as: county, city, regional planning council or council of governments, private, or non-profit.  Formation of AAAs resulted in establishment of offices of approximately 620 agencies providing services across the country.  

     Based on federal and state regulations, AAAs coordinate and offer services such as Meals-on-Wheels, homemaker assistance, and whatever else it may take to make independent living a viable option.  Eligibility does not guarantee that a person will receive a specific service or more than a minus of services due to the fact that available funds must be distributed across a large population and are typically provided based on whether services will reduce the risk of institutionalization for the senior receiving services.

Assisted Living Facility (ALF) Service An ALF is a residential facility that provides limited care for individuals (typically older adults) who require some assistance with ADLS, but do not require medical care that would be provided in a skilled nursing facility.  Residents in essence “pay rent” and for care provided through monthly fees. 
Attending Physician Clinical The primary physician who has responsibility for the treatment and care of the patient.  See also “primary physician.”
Background Check  Caregiving A procedure through which an employer (including family caregivers seeking to directly hire and pay home care workers) reviews public and private information to verify the identity, qualifications, work history, and related facts prior to hiring.  A criminal background check involves the purchase by a company or an individual of a Level 1 check (which limits the check to a review of local and state criminal records) or a Level 2 check (which includes a check of local, state, and federal criminal databases).  Most states require employers to obtain and UFCs should certainly seek a Level 2 check before hiring someone to come into the home.  Background checks can be purchased from local check businesses at a moderate cost.
Caregiver Assessment Caregiving Caregiver assessment is the process of a professional evaluating the needs and resources available to an individual unpaid family caregiver and/or all the UFCs in a family (by blood or affiliation) to provide care to a person who is no longer able to provide self care without assistance.  The assessment will include physical and financial resources the UFC can draw on to provide care, as well as the level of preparedness and willingness of the caregiver (or caregivers) to provide care.  The purpose of caregiver assessment is to determine whether the UFC is an appropriate caregiver and the kinds of support the UFC to ensure quality of care.  CareGiver Reality has developed a special tool for conducting a caregiver assessment.
Care IntegratorTM (CI) Service A Care IntegratorTM is a person who received training in and has been certified to perform the CI duties under a proprietary program offered by CareGiver Reality, Inc.  A CI provides a unique communication link between clinical caregivers and unpaid family caregivers, supporting the delivery of a comprehensive home care plan that integrates solutions to how to meet clinical and nonclinical care needs and practical family caregiving problems (e.g., how to provide transportation to medical appointments).  Visit CareGiverReality.com 
Case or Care Management Service A service provided by professionals to evaluate care needs, develop a plan of care directed at meeting client (patient) needs, and coordinate services.  Consideration may be given to how client needs affect home care and other aspects of care, as well as other individuals in the household, but typically services are directed solely at the individual designated as the client.  Care management may be provided by social workers, clinical social workers, geriatric case managers, and other professionals and offered through independent providers or agencies or government agencies, including AAAs.  Costs may be covered by state funds, local programs, and others sources of funding, as well as covered by individual users.
CD Financial See “certificate of deposit”
Certified Nursing Aide (or Assistant) (CNA) Service CNAs are licensed or certified paid care workers who have training in assisting with personal care, ADLS (such as bathing and dressing), and clinical chores, such as taking vital signs, setting up medical equipment, assisting with medical procedures, and contributing to documenting care recipient behavior, symptoms, and needs.  CNAs work under the supervision of a nurse (RN or LPN) and can work in medical facilities (e.g., hospitals, skilled nursing facilities) and homes.  
Certificate of Deposit (CD) Financial CD.  An instrument evidencing a relationship between a depositor and the depositing institution. The individual depositor agrees to keep money deposited in the financial institution for a certain period of time. In return the depositor is given a higher rate of interest than that of the usual savings account.
Chore Services Services Heavy duty house keeping, home maintenance, and yard services.  Provided through an agency and partially or fully paid for through funded programs and/or insurance programs or may be paid for partially or in-full by the client.  Also see “Homemaker Services.”
Cognitive Function/ Cognitive Impairment Caregiving Cognitive function is the mental process through which people acquire knowledge, process information in order to learn new tasks, make decisions, and in other ways perform rational acts.  Impaired cognitive function is the loss of the mental capacity to perform one or more of actions such as learning, remembering recent and long-past information and actions, recognizing consequences for actions taken, making decisions, and so forth.  Cognitive impairment can result from injury (e.g., head injury), illness (e.g., infections, allergic reactions, brain tumors), and chronic disorders like Alzheimer’s.  Determination of an individual’s competency by a court (competency is a legal, not a medical term) is based on the degree of cognitive impairment (if any) a person is deemed to experience as assessed by a professional qualified by the courts to make such an assessment (e.g., a medical doctor or doctors, a psychiatrist, a psychologist).
Community Care Retirement Community Service CCRC.  A residential community that offers a range of lifestyles, from independent living to assisted living and dementia care, to skilled nursing, all offered within the community.  Most CCRC’s incorporate safety devices in homes or apartments (e.g., emergency signal units in bathrooms, doors that can accommodate wheelchairs) and are typically fully compliant with requirements set out in the Americans with Disabilities Act.  They may also offer services to all residents such as housekeeping and lawn care.  Residents purchase accommodations in CCRCs.
Community Center Service A local, public funded center offering a wide range of programs :(e.g., adult education, trips, social activities, referral services) to residents in a community.  Many community services offer specialized services for older adults, children, the disabled, and families, including providing referral to funded service programs and other community resources.  Some community centers require a paid membership.
Community Resources Service Services found in the local environment, whether free (e.g., provided by volunteers or at no cost by a service organization), paid for through government funding, or available if paid for by the user
Companion Services Service Services including meal preparation, shopping assistance, errand running, and companionship to home bound individuals.  Provided through an agency and partially or fully paid for through funded programs and/or insurance programs or may be paid for partially or in-full by the client.  In some cases companionship may also be offered by volunteer programs (although may be limited to socialization only).
Compatibility of Worker and Care Recipiient Service A major criteria in determining whether to hire a particular individual to provide in-home care for a loved one is personality compatibility.  Being compatible means having characteristics that will ensure a good working relationship between the worker and the care recipient (and the UFC) and, therefore, make it easier for the worker to obtain compliance with care requirements on the part of the care recipient.  Some of the factors to consider are age, gender, cultural differences, and language differences.
Competence Legal Competence is a legal term referring to the capacity of an individual to act reasonably on his/her own behalf.  Legally, competence can only be determined by a court and is frequently adjudicated in relation to fiscal decision making.  In practice, a physician may determine that an individual lacks the capacity (due to mental illness or physical incapacity) to act on his/her own behalf.  In such cases, a health care surrogate may make decisions on behalf.  A person must be deemed competent to provide informed consent, release healthcare information, execute legal documents (e.g., wills, powers of attorney, contracts, service agreements, etc.).  A document signed by a person deemed incompetent is not legally binding.  Note:  In some states, a physician’s issuing a diagnosis of dementia/Alzheimer’s at any stage creates a legal status of incompetence.
Congregate Meals Services Nutritious hot or cold meals offered in a group setting.  Typically served on weekdays (although some programs do offer 7-day service) at noontime, meal sites are located in community centers, in senior centers, and in other central locations.  Congregate meals are regulated by state and local government agencies, as well as food service regulations administered by health departments and similar agencies.  They are typically funded through state and federal grants and served to restricted populations (e.g., over 55, designated homeless, and others).
Conservator Legal Also called “guardian.”  See “Guardian”
Continuum of Care Caregiving The progression of care provided from wellness through treatment to the end of the need for care, from day 1 when a health issue presents itself through the last day care is needed, whether the patient experiences complete recovery or the last day ends with death of the patient.
Corporate Bonds Financial See “Municipal and Corporate Bonds.”
Deferred Payment Loans Legal A long-term, secured loan under which repayment is deferred until the sale of the property.
Direct Employer Service A home care agency that hires employees to provide home care services and pays their wages, taxes, and benefits.  Direct employing home care agencies are typically licensed and inspected by a state licensing agency and are required to maintain thorough documentation, supply training for employees, and carry liability insurance.  Most states also require them to conduct a thorough background check to identify qualified employees.
Discharge Plan/Discharge Planner Service A discharge plan is prepared prior to the release of a patient from a medical facility and outlines the type of clinical care the patient requires on reaching home.  A discharge planner, typically a registered nurse, is responsible for reviewing physician instructions and explaining the plan to the care recipient and/or family member.  

     Note:  When a patient is unable to see to self-care and lives alone or with someone who cannot assist the patient, patients and/or family members/health care surrogates need to notify the discharge planner that the care recipient will not have support in the home and must receive assistance for a paid home care worker, visiting nurse, or other professional qualified to provided needed in-home care and support.  (It is often the case that facility staff overlooks asking whether a person has assistance in the home and the person may be discharged without orders being written for needed support from a paid care worker and other services.)

DNR or Do Not Resuscitate Order Medical An legally binding order that a patient (or his/her designated health care surrogate) doesn’t to wish to have life-sustaining techniques performed in the event of respiratory or cardiac arrest.  A properly completed and legally executed DNR form is signed by the patient’s attending (primary) physician to document that the patient is terminally ill. The form must be signed by the patient or patient’s health care surrogate and witnessed by two individuals.  The form must be presented to emergency medical services personnel at the scene of an emergency call or provided to institutional medical personnel and attached to clinical care plans/orders as part of the patient’s chart.  It is advisable to bring this order to the attention of all care providers in order to insure the DNR is followed.  

     Note:  An advance directive (health care surrogacy power of attorney) may incorporate DNR instructions but the state or a facility may require the execution of an actual DNR form.

Durable Power of Attorney Legal A legal authorization for a designated second party to performs (manages) specific tasks on behalf of an individual when that individual cannot or does not wish to perform those tasks.  Tasks may include managing financial assets, health care, or any other task as specified in the document. The document details the exact responsibilities and limits for management, such as check writing and selling property. It can be effective upon signing or at some future time if an individual becomes incapacitated and unable to manage his or her own affairs.  On the death of the individual authorizing it, a power of attorney is no longer legal or recognized by law.
Emergency Medical Alert System Service A service provided through landline and/or a wireless device that links a vulnerable person (e.g., frail, at risk for falling, subject to seizure) to a support center where a trained person can assess the need for help and notify authorities and family members that the vulnerable person needs immediate assistance.  The person may wear an emergency call device or access a table-top device.  Some devices automatically alert the support center when the device is at an angle that may indicate that a fall or accident has occurred even when the person cannot communicate directly.  There are also systems that can be used to locate a person wearing the device using GPS.  
Emergency Notification Information Summary Caregiving A list of individuals who should be notified or who can provide information in an emergency, including primary UFCs, other family members, physicians and other medical care providers.  Should include health conditions, prescriptions currently being taken, allergies, legal DNR notification, and similar content in order to aid emergency service personnel (rescue squad, hospital staff) in providing appropriate care and posted in a highly visible form and location (often posted on the refrigerator door or in a special “kit” hung on the refrigerator door).  A copy of this list should be available for the rescue squad or a family member to carry to the hospital with the patient.
Employee Retirement and Income Security Act of 1974 Legal ERISA is the acronym for “Employee Retirement and Income Security Act of 1974”, which sets minimum standards for private pension plans. This law established the right of a spouse to have part of the working spouse’s pension after death.
Employment Contract Service A written agreement between a UFC and an individual hired directly by the UFC to provide home care.  The contract should include rate of pay, any benefits offered (e.g., earned vacation, housing), specific duties, work schedule, activities that are not permitted (e.g., using a phone during work hours for personal calls that are not emergencies), actions that may lead to termination (immediate or after an attempt to adjust service delivery), and both employer and employee signatures.  See the CGR Care Guide on “Hiring In-Home Paid Workers.”
End-Stage Condition Medical A condition that is caused by injury, disease, or illness that has resulted in severe and permanent deterioration.  Indicated by incapacity and complete physical dependency (total functional decline) and for which, to a reasonable degree of medical certainty, treatment of the irreversible condition would be medically ineffective.
ERISA Legal ERISA is the acronym for “Employee Retirement and Income Security Act of 1974.”  See “Employee Retirement and Income Security Act of 1974.” 
Estate Planning Financial The process of planning for the disposal of your property, rather than the process of acquiring it, is known as estate planning. The goal is to plan ahead to protect the estate for heirs, and assure that individual wishes are carried out regarding health care and the distribution of your assets. Estate planning includes, but is not limited to, health care planning such as writing a living will or naming a health care surrogate; provision of a durable power of attorney; tax considerations; consideration of life insurance and/or long-term care insurance needs; and preparation of a will or living trust
Expectation Management Caregiving Seek to establish a realistic expectation of outcomes of a course of treatment or form of care in order to avoid having patients, family members, and friends have unrealistic expectations regarding recovery or what will be required for ongoing care needs in order to avoid disappointment, frustration, disillusionment, failure to comply, and other negative effects created by unrealistic expectations.
Family Caregiver (Unpaid Family Caregiver or UFC) Caregiving An Unpaid Family Caregiver (UFC) is an unpaid person who cares for family members who are disabled, elderly, frail, or chronically ill or for  anyone with a physical or mental disability, whether or not related by blood.  UFCs may currently provide assistance of any kind in meeting the needs of a family member or friend; may be anticipating being a UFC for someone who is currently independent when assistance or support is needed; helps someone else by providing care needed by that person’s family member or friend; and/or provides care for someone with special needs who will never be able to fully provide for his/her own independent lifestyle.
Family Caregiving Plan Caregiving A written plan setting out what type of care will be provided and how it will be provided in the home setting.  A Family Caregiving Plan integrates clinical care needs (i.e., what a family caregiver or paid care worker must do to support clinical care needs in the home), nonclinical needs (decisions that have to made, daily tasks that have to be performed such as shopping and transporting care recipient to medical appoints, etc.), and the needs of the UFC that must also be addressed (e.g., how to handle home care when the UFC has to go to work or provide self care).  A plan should contain a a narrative explaining the whys and hows of making decisions, issues that have to be addressed, resources that can be brought to bear immediately and over time, expectations of any changes that might be addressed over time, and a schedule for handling immediate priorities.  See  The Family Caregiver’s Manual:  A Practical Planning Guide to Managing the Care of Your Loved One by David Levy, JD, Gerontologist, for an explanation of how to prepare a Family Caregiving Plan in the form advocated by CareGiver Reality, Inc.
Financial Counseling Service Advisement on management of personal finances.  When funded by local, state, or federal funds, programs provide help in balancing checkbooks, prepare income and property taxes, pay bills, complete forms (Medicare, Medicaid, insurance, etc.), and prepare personal budgets.  Users may also find private-pay financial counseling services that assist with such activities, as well as provide more complicated services (see “Estate Planning” and “Investment Counseling”).
5-Year Look Back Services Under Medicaid, a Medicaid applicant’s financial records are examined and any transfer or gift made in the 5 years (60 months) prior to the date an application is submitted may result in a penalty — specifically, a disqualification period before a person may receive Medicaid benefits.  Because Medicaid is a joint program, paid for through state and federal funds, the disqualification period may vary across states.  The disqualification period is based on a fixed “penalty” amount that is divided into the dollar value of the gift or transfer, resulting in a number that represents how many months must pass before the applicant would begin to actually receive payments once approved for Medicaid.

     EXAMPLE:  A state has set a penalty at $5,000.  The applicant paid $20,000 toward a grandchild’s college fees two years before applying for Medicaid.  That $20,000 will be divided by $5,000 and the disqualification period will be 4 months.  Medicaid payment would begin in month 5 after the person is accepted for Medicaid.  Until Month 5, the person would be required to pay for services received.

Five Wishes Legal The “Five Wishes” is a form of advanced directive (healthcare durable power of attorney) created by the nonprofit organization Living with Dignity.  Introduced in 1996 as a document legal in Florida only, Five Wishes is NOT accepted in all states and some of the states accepting it require a signature and/or that it be notarized.  Designations may not meet the needs or address the references of all individuals who wish to have an advance directive.  Before using “Five Wishes”, state law should be checked in regard to legal requirements — state law may require a specific form of advanced directive and “Five Wishes” and similar documents may not meet those requirements.
Friendly Visitor Service A program in which volunteers make scheduled in-home visits to individuals who are home bound and/or living alone providing companionship, conversation, and sometimes help with errands and light tasks.  Service may be provided by public or private agencies as part of their community service efforts.
Function Medical Ability to move about, to perform daily routing, and maintain environment
Functional Decline Medical Loss of the ability to perform activities of daily living (ADLs, IADLs), whether occurring gradually or suddenly
Geriatric Care Manager (GCM) Service A GCM is a licensed social worker with special training and experience in working with older adults and who has broad knowledge of the types of elder-care services and eligibility requirements. The GCM conducts care-planning assessments; identifies problems that need to be addressed; screens, arranges, and monitors in-home care services; reviews medical issues and offers referrals to geriatric and other specialists to avoid future problems and conserve assets; and provides clinical crisis intervention to families and care recipients.  GCMs work in facilities, provider agencies, and as independent professionals.  Note:  Most GCMs concern themselves with care recipient needs and may have limited knowledge of critical UFC needs and concerns.
Government Securities Financial US Treasury Bonds, US Savings Bonds, US Treasury Bills, and US Treasury Notes are called “government securities.” These investments are considered risk-free because the US Government backs them. Treasury bond interest is free of state and local taxes, while interest gained from Treasury Bills is exempt from local taxes. 
Guardian Legal A court-appointed individual who assumes most of a disabled person’s civil and legal rights for that person’s benefit. The powers are granted for that person’s protection and are subject to the direction of the court. This is generally due to an individual’s physical or cognitive impairment caused by a chronic health condition, injury, or disease that makes it impossible for the individual to manage financial resources, physical health or personal safety.  Also called “conservator.”  See also “Competence.”
Health Care Decision Medical
  1. Informed consent, refusal to consent, or withdrawal of consent to any and all health care, including life-prolonging procedures.
  2. The decision to apply for private, public, government, or Veteran’s benefits to defray the cost of health care.
  3. The right of access to all records of the principal reasonably necessary for a health care surrogate to make decisions involving health care and to apply for benefits.
  4. The decision to make an anatomical gift.
Health Care Surrogate Legal See “Advance Directive.”
Healthcare Durable Power of Attorney Legal See “Advance Directive.”
Home Care Services Service A range of services through which a person who is home bound or in functional decline can receive support for Activities of Daily Living and Instrumental Activities of Daily Living.  Services may be provided by home health aides, certified nurse assistants, and personal care aides, as well as by unpaid family caregivers(UFCs).  In most states, paid care workers who provide such services must undergo a specific training program and be licensed, certified, and/or registered in order to provide such services, even when they are paid privately.  For those who are eligible, some home care services may be paid for through funded programs.

     In relation to family care/home care support provided by UFCs, providing home care requires making practical decisions about how to provide and/or pay for care that falls outside of coverage from insurers and government programs and that may not be offered through community-based resources.  Such care constitutes approximately 85% of the needs of care recipients that must be met (as opposed to about 15% of care that constitutes clinical care support).  

Home-Delivered Meals Service Programs through which prepared nutritious hot or cold meals are delivered to home-bound individuals who are unable to prepare meals for themselves.  Sometimes called “Meals on Wheels”, which is the name of a specific meal delivery program.  Meals programs are regulated by state and local government agencies, as well as by federal regulation and food service regulations administered by health departments and similar agencies.  Such programs may be funded through state and federal grants and are often served to restricted populations (e.g., over 55, homebound regardless of age, and others with special needs).  Private-pay delivery services are often available in a community as well.  

     Note:  It is often the case that those delivering home-delivered meals also provide socialization opportunities for individuals who receive the meals — an opportunity to engage in conversation for the recipients who live a lone or who need additional companionship.

Home Equity Conversion Legal Home equity conversions are special loan programs that take usually take the form of equity loans and credit lines (options vary depending on the policies of lending agencies and government approved programs).  Such conversions allow the elderly to access the equity in their homes in order to receive additional income while they remain in their home.  Elders using conversions may repay the funds or the loan will be repaid when the home is sold just as any mortgage balance would be paid at closing. Homeowners cannot be forced to move or to sell their homes.
Home Equity Loans and Credit Lines Legal Loans made as second mortgages or as a credit extended through a credit line on the basis of the difference between first mortgages and the value of a home above the mortgage value.   Offered by banks and brokerage houses.  Use of a home equity load or credit line should be thoroughly discussed with family members, financial advisors, and/or attorneys. There may be consequences that impact taxes on the estate and heirs or that effect eligibility for other federal and state assistance.  Also see “Reverse Mortgage” and “Home Equity Conversion.”
Home Health Aide (HHA) Service Home health aides are paid care workers who have training in providing basic support for ADLs (e.g., bathing, dressing, eating) and personal care.  Most states required HHAs to have at least limited training and be certified or licensed by the state.  HHAs work under the supervision of a nurse.  Note:  HHAs may NOT provide clinical care support of any kind.
Homemaker Services Service Provides trained people to assist with light housework, laundry, shopping, and meal preparation.  Agencies provide this service through funded programs and for private pay.
Hospice Service Provided in the home or in a facility (stand alone or part of another care institution), hospice offers care dedicated to providing medical and care services designed to ensure comfort and palliative support for individuals diagnosed with terminal illness and, typically, incorporating psychological support for family members both during the patient’s illness and after his/her death.  Insurance plans and some federal, state, and local programs cover costs of hospice care and private pay options are available.  Funded services may include providing necessary equipment for home-based care (e.g., hospital bed).
Hospitalist Service A hospitalist is a physician who is paid by a hospital (and insurers) to monitor patient clinical care in order to avoid unnecessary expenditure of resources.  The hospitalist is paid to render good medical advice and more the discharge process along.  Because the hospitalist is responsible to the facility and the insurers, he/she sometimes overlooks important considerations related to patient care in the home.  For example, the hospitalist may insist a patient who lives alone and requires home care support is ready for release, but does not ascertain whether a family caregiver or other person is available to provide care or whether paid care support is required.  Family caregivers and/or the patient must be prepared to challenge orders for release and/or lack of planning for home care when necessary.
IADLs Clinical Instrumental Activities of Daily Living (see definition)
Incompetence Legal See “Competence.”
Informed Consent Legal Permission obtained before conducting a physical or mental health care intervention or procedure on an individual.  The process involves a professional care provider or researcher informing a patient of the nature of  care and its side effects to be provided or the details of a research procedure (treatment protocol including use of placebos, possible side effects, tests, etc.) and obtaining formal consent, documented by the completion of an informed consent form executed by the patient (or health care surrogate).  Informed consent is given based on the professional providing a clear understanding of facts and consequences of actions taken by the professional AND the individual concerned being given and understanding all information necessary to make a rational decision and having the capacity to make that decision.  Individuals with dementia, severe mental illness, or other functional incapacity, who are unconscious, or/and who are deemed intellectually or emotionally immature and/or who have been deemed legally incompetent — in other words, those who are determined to have impaired judgment and reasoning — are not considered competent to give informed consent.  Healthcare surrogates, parents, legal guardians, and others with the legal right to give consent may act on behalf of the patient.  Failure to obtain informed consent or not providing the information necessary to make an informed decision is ethically questionable and may have legal consequences.
In-Home Care Caregiving Services provided in a home setting that enable a person who has limited or no ability to perform daily activities (ADLs, IADLs) without assistance.  May be provided by family members, paid care workers such as home health aides, home care nurses, and other paid professionals, and in some cases volunteers (e.g., social support such as visits and reading).  May also include home visits conducted by social workers, care integrators, and others to assess care needs and coordinate services and provide support for family caregivers.
Individual Retirement Account (IRA) Financial IRA.  The federal government allows wage earners younger than 70½ years old to deposit $2,000 in a special account known as an IRA.  IRAs can be invested in instruments such as stocks, CDs, mutual funds, bonds, or government securities. These monies may be eligible (there are restrictions based on wage and marital status) for deduction from gross income for income tax purposes. The primary advantage of IRAs is that contributions, interest, dividends, and capital gains are tax-deferred until money is withdrawn on retirement. The Roth IRA is not tax deferred; however, withdrawals are considered non-taxable income.
Instrumental Activities of Daily Living Clinical IADLs.  The more complicated skills that are necessary for maintaining the home environment and performing key tasks like managing one’s personal life, including performing handyman work around the house, doing housework, doing laundry, getting to places beyond walking distance, managing money, preparing meals, shopping for groceries, taking the right medication in the right dose at the right time, using the telephone.
Insurance Counseling Service As part of a funded program, specially trained counselors are provided to discuss Medicare, Medicaid, and other insurance questions or problems.
IRA Financial See Individual Retirement Account.
Investment Counseling Service A private-pay service provided by investment professionals who can guide an individual in managing investments such as stock purchases, guiding selection of products to purchase and/or sell, balancing types of products purchased to ensure ongoing profitability, maintaining and providing documentation of gains and loses, and similar services.
Lead Agency Service A for-profit or non-profit agency who receives a contract from an Area Agency on Aging (or similar agency) to provide specific services to eligible individuals.  The cost of services are paid through local, state, or federal grants that are administered by the AAA (or other agency) and passed through to the lead agency, which typically assesses individuals for eligibility, pays service providers for services, and bills the AAA (or other agency) for reimbursement of those payments.  Lead agencies receive an administrative fee for performing this function.  A non-profit or for-profit agency typically participates in a competitive grant process that designates services to be provided, administrative fee to be paid, service delivery criteria, and other service delivery requirements.  Lead agencies are typically subject to inspection and must meet standardized criteria, including those for record keeping and timeliness of service delivery.  
Legal Services Service
  1. Legal referral funded by public agencies provides advice and referral to lawyers specializing in problems of the elderly, disabled/impaired, and other special populations.
  2. Some entities (public and private) provide pro bono services or services on a sliding scale to those requiring legal representation or assistance in preparing legal documents.

Both the types of services and fees for such services vary widely.  Some state and local agencies provide full or partial funding for some special populations.  Information can be obtained through funded agencies, 211 services and similar programs, and local and state bar associations.

Level of Need Caregiving Defined as the type and degree of support a care recipient requires to maintain basic well being.  In a medical setting this means determining the type and extent of medical intervention (e.g., medication, form of treatment, etc.) a patient may require to recover or maintain well being.  In the context of family caregiving, level of care refers to a combination of clinical and nonclinical support that must be delivered in the home to maintain a care recipient’s well being.  

     The challenge for a UFC is to separate what is necessary for well being from what is desired because of personal preference.  The level of care provided will affect the cost of care and how resources are used over time and is an important consideration in planning long-term care.

Licensed Practical Nurse (LPN) Service Professionally trained and licensed by states, LPNs are trained to provide front-line home and facility care and oversee medications.  LPNs are supervised by physicians and/or Registered Nurses, but do not have the level of training of Registered Nurses and are not licensed to provide high-level clinical care.  There are fewer LPNs than RNs, largely due to the fact that LPNs receive substantially lower compensation than RNs receive.
Life-Prolonging Procedure Clinical Any medical procedure, treatment, or intervention including artificial lay provided sustenance and hydrating which sustains, restores, or supplants a spontaneous vital function.  Such procedures include tube feeding and artificial respiration.  Administration of medical or performance of a medical procedure is not considered a life-prolonging procedure when deemed necessary to provide comfort care or alleviate pain.  The option to provide life-prolonging procedures is typically affected by state regulations.  For example, state law may require that if it is unclear how long a person (even if that person has a DNR order) has been unresponsive in a medical emergency, emergency squad personnel must provide artificial respiration or CPR until a physician officially declares the patient deceased.
Living Trust Legal The transfer of the ownership of financial assets from an individual’s name to the name of a trust. Also known as a revocable trust. Because it is revocable it may be changed or canceled and the ownership can be returned to the individual. When the trust comes into effect, the individual who is named as trustee and beneficiary maintains control of the trust. Distribution of assets is detailed in the trust documents and trust assets do not go through probate upon death of the individual who formed the trust.
Living Will Legal A living will is form of an advance directive that states a person’s wishes concerning life-sustaining treatment. The document may authorize an individual (sometimes called a health care surrogate or agent) to act on the individual’s behalf when he/she is unable to act (e.g., when in a coma).  The living will instructs his or her doctor concerning treatment acceptance or rejection. Examples of life-sustaining treatments are cardiopulmonary resuscitation (CPR), mechanical respirators, renal dialysis, experimental medication and procedures, and artificial feeding. A living will may also provide directions about donating organs and tissues in the event that death occurs. 

     States vary in their regulations for living wills.  For example, in some states, when a person makes an oral statement about medical procedures he/she wishes to have or wishes not to have and the statement is made in the presence of witnesses, that oral statement may be considered a legal living will.  However, it is highly recommended that each individual prepare a written document stating his/her wishes to avoid any question as to his/her wishes.  

Long Distance Caregiver Caregiving A family member (unpaid family caregiver or UFC) or other unpaid caregiver acting in the role of family caregiver who lives outside of easy travel distance who makes or participates in making final family caregiving decisions or who takes some responsibility for checking on quality of care delivery, regardless of who does the daily care.  See also, “Alpha  Caregiver”, “Family Caregiver”, “Paid Care Worker”, and “Primary Caregiver.”
Look-Back Period Service See “5-Year Look Back Period”
Maturity Date Financial The date at which a bond or promissory note is due to be paid out to the purchaser.
Meals on Wheels Service The name of a specific home-delivered meals program (often used to refer to any home-delivered meals program).
Medicaid Service A program open to low-income families and individuals (eligibility determined by income as defined by federal poverty guidelines) funded jointly by state and federal funds and used to pay for long-term medical and custodial care.  Eligibility is determined based on a mix of federal and state requirements, and state requirements may vary by state.  It should be noted that even if an applicant is qualified for Medicaid, the applicant may not be enrolled due to limited state funding, although the qualified applicant may be placed on a waitlist for services based on risk level.  (See also, “Risk” and “5-Year Look Back.”
Medicare and Medicare Parts A, B, C, and D Service Medicare is (as a described on medicare.gov): 

     Medicare is the federal health insurance program for individuals 65 and older, certain young people with disabilities, and individuals with End-Stage Renal Disease (permanent kidney failure requiring dialysis or kidney transplant, sometimes called ESRD).”  Medicare includes hospital insurance (Part A), medical insurance (Part B), Medicare advantage programs (Part C), and prescription drug coverage (Part D).  Medicare itself does NOT include long-term care (e.g., costs for long-term institutional care), although some insurers who provide Part C coverage may include limited coverage for long-term care costs as a benefit of a plan they offer (either as part of an Advantage Plan or through an additional plan offering).  

     Medicare is paid for through two trust accounts held by the federal government:  

  1. Hospital Insurance (HI) Trust Fund, which is funded by payroll takes paid by most employers and employees and people who are self-employed and through other sources such as taxes paid on Social Security interest paid on the trust fund investments, and Medicare Part A premiums paid by some people who are not eligible for premium-free Medicare Part A.  The HI Trust Fund pays for Medicare Part A (Hospital Insurance) benefits (e.g., inpatient hospital care, skilled nursing facility care, home healthcare for a limited time following hospitalization, and hospice care) and Medicare Program administration (like costs for paying benefits, collecting Medicare taxes, and combating fraud and abuse)
  2. Supplementary Medical Insurance (SMI) Trust Fund, premiums paid by people enrolled in Medicare Part B (Medical Insurance) and Medicare Part D (Prescription drug coverage), other sources such as interest earned on trust fund investments, and funds authorized by Congress.  The Trust Fund pays for Part B benefits, Part D benefits, Medicare Program administration (like costs for paying benefits and combating fraud and abuse).
Mobility Clinical Ability to move about and act on our environments; e.g., walk, lift objects with hands, open doors, drive.
Municipal and Corporate Bonds Financial Long-term promissory notes that may be purchased from municipalities and corporations. Most bonds pay a fixed rate of interest that is received at regular intervals. When the bond matures (the date the note is due to be paid) it is cashed in for its face value. Interest monies gained from municipal bonds are free of federal taxes.
Municipal Bonds Financial See “Municipal and Corporate Bonds.”
Mutual Fund Financial A professionally managed group of investment accounts. These funds provide the opportunity to diversify investments toward the goal of long-term financial gain. Fund companies may have different plans that allow the investor to emphasize investment returns such as growth, growth and income, or income only. Funds may also be directed at a particular type or area for investment such as bonds, money market funds, or overseas investments; some may be tax-free.
Nursing Home Service A nursing home is a residential facility offering support for ADLs.  The facility may have medical staff (a nurse, a doctor) but is not certified to provide care under Medicare or Medicaid.  Residents are most often long-term residents who are frail but whose health does not require skilled nursing.  Also see “Skilled Nursing Facility.”
Occupational Therapist (OT) Service Occupational therapists are professionals trained and licensed under state law to help patients relearn essential basic ADL skills (e.g., dressing, cooking, bathing, ambulation, toileting) following a stroke or an injury that impairs function.  Offered in a facility or in the home, occupational therapy plays a major role in improving quality-of-life for the patient and to regaining function (and independence) to the highest degree possible.  Under Medicare, a patient must be a hospital inpatient for at least 72 hours (including 2 overnight stays) to be eligible for OT services reimbursed by Medicare.  OTs assess the patient’s therapy needs and contribute to preparing clinical care plans.
Ombudsman Service An individual employed by a public or private agency who receives and examines complaints about service denial and quality and nature of services provided and is charged with ensuring members of the public receive equitable and appropriate treatment in assignment of type and quantity of services.  By law, some agencies (e.g., insurance companies, agencies receiving government funding) are required to provide clients with access to an ombudsman.  Formal procedures, including documentation required and a step-by-step process, must be followed to file and process a complaint.  Service providers required to provide an ombudsman program are also required to inform clients of the nature and availability of the program and cooperate in resolution of any complaint.
Paid Care Worker Service A Paid Care Worker is an individual with limited training in providing home care and is classified as a paraprofessionals.  Paid Care Workers provide may provide limited clinical care in the home, basic care supporting performance of ADLs and IADLs, and personal care tasks.  They may work in the home or in an institutional setting, be self-employed or employed buy an agency or registry. Also see “Home Health Aide” and “Certified Nursing Assistant.”  Paid Care Workers are typically female and of immigrant status.  Most states require a Paid Care Worker to be licensed or certified.
Pension Payments Options Financial There are generally several choices as to how a pension is to be paid pension payments. The final decision is usually made at the time of retirement. Options include:  lifetime maximum, which ends with the death of the pensioner; lump sum payment on retirement; payment over a set time period, such as 15 years, after which no more payments are received; and spouse guaranteed a percentage of the retirement benefit at the time of death (usually 50%).
Personal Care Services Service Provides a specially trained person to assist with Activities of Daily Living such as bathing, dressing, and personal hygiene.  
Physical Therapist (PT) Service Professionals trained and licensed under state law to help people regain motor skills, adjust to changes in mobility, strengthen muscles, etc.  Following surgery, illness, or an accident, as part of the followup clinical care plan, physical therapy may be offered in a facility (hospital, Skilled Nursing Facility/SNF, Rehabilitation Center), outpatient settings such as outpatient clinics, and in the home.  Under Medicare, the patient must be a hospital in-patient for at least 72 hours before being eligible for physical therapy services paid for by Medicare.  PTs assess a patient’s therapy needs and participate in developing clinical care plans following injury or illness.
Physical Therapy Assistant (PTA) Service A professional trained and licensed by a state to work in association with a Physical Therapist and typically provide the physical treatment the Physical Therapist has assessed as being needed and specified in the care plan.
Physician’s Assistant (PA) Service A Physician’s Assistant is a mid-level medical professional concerned with prevention, treatment, and monitoring patients’ clinical needs.  PAs are nationally certified and state licensed to practice medicine and complete training in less time than required for a traditional medical degree.  Trained to use a medical treatment model, PAs scope of practice varies by state and care delivery setting.  They may coordinate care, order tests and analyze test results, conduct physical examinations, advise on preventive health care, assist in surgery, prescribe medications, and perform procedures.  PAs, who work in collaboration with physicians and other medical professionals, work in medical facilities, physicians’ offices, stand-alone clinics, and are increasingly found in rural care settings where physician services are limited or generally absent.
Polypharmacy Clinical The use of multiple medications, whether prescribed or over the counter.  In many cases, the treatment of disorders require that a patient take more than one medication and more than one medication to address multiple disorders.  People of all ages who have chronic and/or multiple disorders may take numerous medications and sometimes treatment for an acute condition can add medications to an already long list.

    However, because the side effects and interactions of medications and over-the-counter (OTC) products are difficult to predict, polypharmacy is a potentially harmful practice.  Some prescribed/OTC medications contain the same drugs and the effects and side effects of the products when taken together may create life-threatening conditions.  Some actually cancel out the benefits of other medications. 

     There is also a trend to self-medicate.  The use of OTCs, including herbs and substances that have significant physical effects, can create conflicts with or increase the effects of prescribed medications.  

     If a person has several physicians, those physicians may not know which medications/OTCs a person is taking, either because the patient has not informed them or been asked to provide a list and/or because physicians have not exchanged patient records.  Periodic review by the person’s primary care physician and/or a pharmacist of prescribed and OTC products a patient is taking is required to avoid over-medication, under-medication, and unhealthy interactions due to polypharmacy.

Power of Attorney Legal A legal authorization for a designated second party to manage a person’s affairs; see “Durable Power of Attorney” and “Health Care Surrogacy.”
Practical Problem Solving Caregiving In family caregiving, the process unpaid family caregivers (UFCs) go through to

  1. Identify possible solutions to meet a care need (e.g., modify a doorway to accommodate a wheelchair) or solve an everyday problem (e.g., transport someone to a medical appointment when the UFC is working and cannot do it). 
  2. Consider the costs and benefits of each possible solution — how effective the solution will be and the time, effort, resources, and dollars each will use to meet the need.
  3. Choose the best option for solving the problem.

The most important point for UFCs is to recognize that a solution may not be perfect, but even if a solution only solves the problem over the short term, having a working solution gives the UFC time to find a more functional solution.  Caregiving is not about perfection — it is about doing the best one can under the circumstances.

Prescription Drug Coverage Service Prescription drug coverage is a form of insurance provided by insurers that covers the cost of generic and name-brand drugs. Some insurers offer stand-alone drug plans and some incorporate drug coverage in other forms of private pay insurance.  Prescription drug coverage is an especially important part of Medicare Advantage Plans (Medicare Part D).  All insurer plans specifying in detail which drugs are covered, payment differences based on whether the drugs are generic or name-brand, co-pays, and other limitations.
Primary Caregiver Caregiving A family member (unpaid family caregiver or UFC) or a unpaid person filling the role of a family caregiver who is dealing directly with the care needs of another person or is responsible for implementing and guiding the daily care performed by paid or unpaid workers (including other family members, friends, and volunteers).  See also “Alpha Caregiver”, “Family Caregiver”, “Long Distance”, “Paid Care Worker.”
Primary Physician Clinical A physician designated as having responsibility for the treatment and care of the patient.  Insurers typically require designation of a primary physician, who provides general medical care and is authorized to refer patients to specialists and others for supportive care.
Principal Legal A competent adult executing an advanced directive and on whose behalf healthcare decisions are to a be made.
Proxy Legal A competent adult who has not been expressly designated to make healthcare decisions for an incapacitated individual, but who, nevertheless, is authorized to make healthcare decisions for such individual.  For example, a spouse may be authorized to make decisions for his/her spouse even in the absence of an advanced directive.
REA Legal See “Retirement Equity Act and The Tax Reform Act.”
Registered Nurse (RN) Service Professionally trained and licensed, Registered Nurses (RNs) monitor and manage care in hospitals, SNFs, and rehabilitation centers where care requires high-level clinical assistance.  RNs may hold supervisory positions overseeing the work of LPNs, CNAs, and other healthcare workers.  They conduct or assist in medical procedures and may participate in the care planning process, depending on their level of responsibility.  RNs are in short supply and it is estimated that by 2020 there will be a shortage of almost 1 million nurses, which will place an enormous strain on health care delivery and make family caregiving even more complex.
Registry Service A business that maintains a list of individuals who appear to have the credentials to fill job requirements and who are available to perform home care.  The workers either pay a fee for referrals or work as independent contractors.  Although registries carry liability insurance, they may not be responsible for the performance of listed workers or ensure that those workers maintain their own liability insurance (in spite of state requirements).  Responsible agencies verify credentials and the worker’s insurance and maintain records of referrals.  
Rehabilitation Therapist Service See ‘Physical Therapist.”
Respite Service Designed to provide temporary relief for an unpaid family caregiver or to ensure continuity of care for a care recipient when a family caregiver is unable to provide care for a period of time due to illness or a family emergency.  Respite is provided by (a) placing a qualified paid care worker in the home to provide caregiving for a care recipient for a few hours, a day, or even overnight and for several days, (b) placing the care recipient in an adult day care for a few hours a day or for several days, or (c) or in a facility (e.g., nursing home) overnight or for several days.  Services may be provided on a private pay basis or through a funded service when eligibility requirements are met.
Retirement Equity Act and The Tax Reform Act Legal The Retirement Equity Act (1984) and The Tax Reform Act (1986) expanded the protections of ERISA.  These acts include provisions that protect the rights of spouses, require informing employees and beneficiaries of their rights, mandate that money must be available to pay pension benefits, and provide for insurance to protect employees in the event that the pension plan is terminated.
Reverse Mortgage Legal A form of loan allowing access to home equity.  See “Home Equity Conversion.”  
Risk/Risk Score Clinical Generally, “risk” refers to the degree to which a person’s well being may be affected in a negative way by frailty, an illness, a treatment or lack of treatment, or a behavior, such that it leads to incapacity to perform ADLs and IADLs (functional decline).  Risk may also result when a family caregiver is unable to provide care any longer or a person living alone is unable to provide adequate self care, even with in-home paid care.  

     Risk can be defined more specifically in relation to whether a person is eligible for and/or approved to receive services paid through a local, state, or federal program, such as Community Care for the Elderly.  Under such programs, risk may mean how likely it is that a person will require institutional care to maintain quality of life and how likely it is that care at home can delay or prevent institutionalization. Home care is typically less costly (especially when an unpaid family caregiver provides and oversees home care).  

     When agencies are assessing whether a person is eligible to receive government funded services, the agency assigns a “risk score” to that person that guides the types and levels (including hours allowed) of services provided, where those services will be provided, and for how long.  In this context RISK means whether and how soon a person will require institutional care.  The goal is to avoid institutionalization if at all possible — putting a few hundred dollars a month of home care in place may avoid having to pay many thousands a month for institutional care.

      Level of risk is also one criteria used to determine a care recipient’s ranking in allocating service supports — there are many people who are eligible to receive services but limited funds make it necessary to provide service as to those in greatest need first.  Wait listing is common.  A person may be eligible to receive care due to age, for example, but when assessed may not have a high enough level of risk to receive services.  If there is a need for government funded services to support care, caregivers need to ensure that care recipients are assessed periodically to determine whether their risk score is higher and, therefore, they receive critical services when needed.  

Safety Inventory Caregiving A review of the physical environment of a home or facility to determine its condition and the presence of hazards that may inhibit the ability of a care recipient to maintain or be maintained with safety in the environment.  A Safety Inventory can be used to assess whether a space can be adapted for the care of a person in a home (e.g., if the bathroom door cannot accommodate a wheel chair, can the door be widened or another option used to make access possible; to determine height of light switches to ensure they can be reached without difficulty).  An inventory can also be applied to determine if a facility being considered for residence can meet the care needs of a care recipient (i.e., is it in acceptable condition to ensure safety?).
Sale/Leaseback Conversions Legal The homeowner sells the home to an investor while retaining the right to live in the property for life. In this type of arrangement, one becomes a renter in his or her own home. The purchase price is paid as a lump sum plus fixed monthly amounts, based on the seller’s life expectancy.  If the seller dies before the full loan is repaid, the loan balance is paid to the estate. Payments to the seller should be from a secured source of funds.
Senior Center Service A facility offering socialization activities and other nonclinical support services to older adults (typically 55 and older).  Services may include adult education classes, special events, trips, health screenings, legal and financial counseling, congregate meals, cafe service, and case management.  Some centers are nonprofit, others are for-profit.  Membership may be required, although public facilities may be open to anyone.  Some centers also provide access to other services (e.g., home care) funded through local, state, and federal programs.  See also “community center.”
Skilled Nursing Facility (SNF) Service A residential facility that meets federal standards for providing nursing and rehabilitative care under Medicare and Medicaid.  Services include supervision of each patient by a physician, assistance with IADLs as well as clinical care, and other services.  Residents may be short term or long term residents.  SNFs are not considered to be nursing homes, which are not qualified to receive payments under Medicaid or Medicare.  See “Nursing Homes.”
Social Worker (SW), Licensed Clinical Social Worker (LCSW), and Masters in Social Work (MSW) Service Social work as a discipline is dedicated to supporting the welfare of individuals, groups, and communities.  Social workers are degrees professionals who work with people to ensure their welfare.  In relation to supporting caregiving, social workers are particularly concerned with ensuring that care recipients have the services and support they need to maintain the highest degree of independence possible and that their clinical needs are met.  They are concerned with equitable treatment of their clients and assist in identifying needed services and service providers, provide some counseling for care recipients and family members, and in other ways advocate for and ensure that basic care is provided for the care recipient.  In relation to caregiving, a regular social worker (SW) has a 4-year degree and practical experience, may serve as a regular case manager, and in general advocates for and assists in implementing service delivery plans.  Social workers may assist in filing insurance claims and determine eligible for support from community programs.  

      A Licensed Clinical Social Worker (LCSW) has a masters degree and special training in mental health; LCSWs provide emotional and mental health counseling support as well as addressing patient care needs.  An MSW only also has a masters degree and focuses on a higher level of support for the needs of care recipients.  Social workers may work in agencies (including hospitals and service providers), functioning as case managers, or conduct a private practice.,  

     Note:  The emphasis of most social workers is on care recipients and the needs of unpaid family caregivers are often not a priority or even a concern.

Speech Therapist (ST) Service A speech therapist (ST) works with speech and swallowing issues, helping care recipients retrain muscles and regain needed reflexes impaired by strokes, others illnesses, and accidents.  STs are often vital to evaluating a care recipient’s capability to swallow properly.  Improper swallowing can lead to inhaling food and fluid into the lungs, which can lead to aspiration pneumonia and/or severe choking episodes.  Under Medicare, a care recipient must be a hospital in-patient for at least 72 hours (including two overnight stays) before being eligible for speech therapy.
Surrogate Legal Any competent adult expressly designated by another competent adult (the principal) to make healthcare decisions on his/her behalf when he/she is incapacitated.  See “Advance Directive.”
Telephone Reassurance Service Provides valuable social contact with scheduled telephone calls dedicated to monitoring health and other needs.  Available as a funded service through local and state agencies for eligible participants.  In some communities, volunteers from public or private agencies provide regular services.
Terminal Condition Medical A condition caused by injury, disease, or illness from which there is no reasonable probability of recovery and which in most cases without treatment or even with treatment can be expected to cause death.
TRA Legal See “Retirement Equity Act and The Tax Reform Act.”
Transportation Services Service An organized program offering individual and/or group rides that provides transportation to adult day care and other care facilities, health care appointments, community centers and church services, shopping, and other locations.   Some transportation services are limited to those with medical or other disabilities. They may be funded through agencies (e.g., transportation of the elderly by a service agency and paid for through a combination of federal and state funds and administered through an Area Agency on Aging) or by local government (e.g., low or no-cost transportation for the elderly or handicapped on public buses or dedicated vehicles).  

     Many transportation programs provide door-to-door service; others limit their services to regularly scheduled pick up and delivery points. Programs may charge small fees (like co-pays} for regular trips, offer reduced cost rides, or provide no-cost rides for eligible participants.  Most permit aides to accompany care recipients.  Most programs provide only group rides; some provide individual rides.  

     Programs receiving federal or state department of transportation fees and those licensed by local or state government (which are, in essence, all legally provided programs) are heavily regulated (requiring specific training for drivers, licensing of drivers and vehicles) and subject to inspections and reporting requirements.

Trust (revocable, irrevocable) Legal A trust is a legal structure that allows a person to place all or part of his/her assets into the trust allowing for an easy transfer of assets in the trust in a way that avoids probate (which can be time consuming and costly).  A designated person, called the “trustee” is given responsibility for managing that individual’s assets for the benefit of the eventual beneficiary.  The creator of the trust can be the trustee, or he/she can designate someone else to be trustee.  

     The trustee has a fiduciary duty to manage the trust prudently in the best interests of the trust’s beneficiary or beneficiaries designated by the trust settlor, also called a grantor. Some trusts become active only on the death of the creator; others are active during the creator’s lifetime.  

     According to the creator’s (or grantor’s) wishes, the trust document what assets are to be part of the trust and what happens to them during his/her lifetime and/or on his/her death. Unlike a will, a living trust is in effect while the creator is alive and endures after his/her death.

  Living trusts can be revocable or irrevocable.  Revocable means that the trust creator can designate him/herself as the trustee and take control of assets within the trust. The assets remain a part of the creator’s estate and may still be liable for estate taxes if the value of the assets if more than any estate tax exemption when the creator dies.  The creator can amend the trust rules at any time; for example, he/she can change beneficiaries or undo the trust at any time.  

     In an irrevocable living trust, the creator gives up some control over the trust.  The person serving as trustee becomes the legal owner of the trust, but the creator’s taxable estate would be reduced.  Once an irrevocable trust  is established, the creator can do little to make changes in terms or named beneficiaries.  

Viatical Settlements Legal A viatical settlement allows individuals facing life-threatening illnesses, such as cancer, severe heart disease, AIDS, Alzheimer’s disease or other conditions, to sell their life insurance policy to a third party for cash, while they are still able to use the money. There are no restrictions on how funds from a viatical settlement can be used. The purchaser of the life insurance policy then becomes the beneficiary, and is responsible for making all future premium payments to keep the policy in force. 

     Another insurance related financial option is accelerated death benefit (ADB). This is included as a rider in some life insurance policies. At this time there is no government regulation on viatical settlements. For more specific information contact the Viatical Association of America.

    (The term “Viatical settlement” comes from the Latin word viaticum meaning “provisions for a journey.” Viaticum were supplies Roman soldiers were given in preparation for journeys into battle, ostensibly, journeys from which they might not return.)

Will Legal A document that directs the transfer of ownership of assets after death. These assets are transferred under the supervision of the probate court. Probate is a legal procedure for settling an estate. A will can also be used to put assets into a trust for the trustee to manage. The trustee is obligated to manage the trust and its proceeds for the benefit of the beneficiaries. When death occurs without a will, most states have laws regarding the distribution of property among surviving relatives.  Note:  The legal structure of wills and trust documents vary state to state and it is typical that a will will be valid only in the state in which it is executed.  Therefore, forms provided in office supply stores and similar sources or through on-line legal sites should be examined carefully before use (preferably by an attorney qualified in the state where the will be executives) to ensure that the form complies with and allows for state law.



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Posted on

October 30, 2021