Glossary

Here are some abbreviations you may see on this site.

• LO = loved one, usually the person you are caring for.
• MIL = Mother-in-Law, same as FIL, DIL, SIL
• POA = Power of Attorney
• CMS = Centers for Medicaid and Medicare
• FTD = Frontotemporal Dementia
• CNA = Certified Nurse Assistant
• DNR = Do Not Resuscitate
• LBD = Lewy Body Dementia

We have started to not use the word behavior because it only has a bad connotation. We never speak of all the good “behaviors” a person with dementia has. Loving, kind, silly, artistic, fun, willing to try, funny… We only talk about what we perceive as bad, inappropriate or need to be managed behaviors. A lot of a persons “behaviors” are simply reactions to our actions.

https://beinginthemoment.org/know-how-pathway/looking-at-the-why-understanding-behaviors/

Active listening is a skill that can be acquired and developed with practice. “Active listening” means, as its name suggests, actively listening. That is fully concentrating on what is being said rather than just passively “hearing” the message of the speaker. Active listening involves listening with all senses.

Daily functions such as getting dressed, eating, taking a shower or bath, going to the bathroom, getting into a bed or chair, or walking from place to place. The amount of help a person needs with ADLs is often used as a measure to determine whether he or she meets the requirements for long-term care services in a nursing home as well as government subsidized home and community-based services. (Also see Instrumental Activities of Daily Living.)

Community-based programs that provide meals and structured activities for people with cognitive or functional impairments, as well as adults needing social interaction and a place to go when their family caregivers are at work. (See also Respite.)

Legal documents that allow you to plan and make known your own end-of-life wishes about health care and treatment in the event that you are unable to communicate. Advance directives consist of (1) a living will and (2) a medical (health care) power of attorney, sometimes called “health care surrogate,” depending on the state. (See Living Will and Medical Power of  Attorney).

You can create a living will and medical power of attorney form without a lawyer. However, it is very important that you use advance directive forms specifically created for your state so that they are legal. Caring Connections (www.caringinfo.org) provides free advance directives and instructions for each state.

These are registered nurses with specialized education and training beyond the level of a basic registered nurse. Some are called clinical nurse specialists, and some are called nurse practitioners. (See Nurse Practitioner.)

Alzheimer’s disease is a progressive disorder that causes brain cells to waste away (degenerate)
and die. Alzheimer’s disease is the most common cause of dementia — a continuous decline in
thinking, behavioral and social skills that disrupts a person’s ability to function independently.
The early signs of the disease may be forgetting recent events or conversations. As the disease
progresses, a person with Alzheimer’s disease will develop severe memory impairment and lose
the ability to carry out everyday tasks. (Mayo Clinic.com)

 Amyloid beta is a normal protein peptide in the human brain, but these particles are chemically “sticky” and gradually build up into plaques, or tough fibril-like structures called amyloid plaques in the brains of people developing Alzheimer’s disease. The small clumps may block cell-to-cell signaling at synapses. They may also activate immune system cells that trigger inflammation in the brain.  Because amyloid beta starts to accumulate in the brain decades before the onset of dementia, ADRC researchers see a window of opportunity to leverage lifestyle changes or new medications to intervene in this early disease process.  Clinical trial efforts  are underway, at sites such as the ADRC, to test the efficacy of drugs to remove or prevent amyloid beta buildup, and their potential to reduce or delay the onset of cognitive impairment.

Trouble understanding what people are saying or speaking.

Apolipoprotein E is a cholesterol transport protein and has been found in the amyloid plaques in Alzheimer’s disease. It comes in several types or “alleles” -2, 3, and 4. Each person has two alleles (one from each parent) which you can have in any combination of the three types. Apolipoprotein E-4 has been shown to increase the risk of Alzheimer’s disease but does not cause Alzheimer’s disease, whereas apolipoprotein E-2 decreases the risk of Alzheimer’s disease. Apolipoprotein E-3, the allele that occurs most commonly, neither increases nor decreases the risk of Alzheimer’s disease. (Finding out one’s apolipoprotein E type is NOT a genetic test for Alzheimer’s disease. Although more people with E-4 eventually get the disease than those with E-3 or 2, some people with E-4 never get Alzheimer’s.)

The loss of the ability to perform tasks that require remembering patterns or sequences of movements (like giving a salute).

AAAs coordinate and offer services that help older adults remain in their home, if that is their preference. Services might include Meals-on-Wheels, homemaker assistance, and whatever else it may take to enable the individual to stay in his or her own home. By making a range of options available, AAAs make it possible for older individuals to choose home-and community-based services and a living arrangement that suits them best. (See Eldercare Locator.)

A state-regulated residential long-term care option that may have different names depending on the state. Assisted living provides or coordinates oversight and services to meet residents’ individualized, scheduled needs, based on the residents’ assessment and service plans, and their unscheduled needs as they arise. There are more than 26 designations that states use to refer to what is commonly known as “assisted living.” There is no single uniform definition of assisted living, and there are no federal regulations for assisted living. In many states, most assisted living is private pay. Be sure to check with your state about any waiver programs that might be available through Medicaid to pay for the care provided in assisted living.

A person’s ability to make their own choices.

We place a label on anything a person with dementia does. If they don’t want to sit, we call them a wanderer. If they want to walk, we say they are eloping. If they get frustrated, they are aggressive. We have a poor mindset about the word behavior, we only think of the negative. How about we say actions and reactions? A lot of persons living with dementia are reacting to our actions.

https://beinginthemoment.org/know-how-pathway/looking-at-the-why-understanding-behaviors/

A nurse, social worker, or other healthcare professional who plans and coordinates services for an individual’s care. This person usually works for an agency or care setting. (Also see Geriatric Care Manager.)

Many people use the term of care partner for any caregiving situation. We feel that you can use whatever term makes you comfortable and is right for you. My story is that for many years we were care partners with my Mom. We received love and care and help from her and she received the same from us. And slowly it was more and more about care for her and nothing back from her. Sure we received smiles and laughter. But at that point we were doing all the care and didn’t feel a partnership. It felt like we were caregivers. I feel you are genuinely care partner in the beginning and then you be you.

A detailed written plan that describes what is needed for an individual’s care and provided by a range of health professionals, including nurses, therapists, social workers, nursing or personal assistants. For those living at home, a good care plan should also list the caregiving activities that family members are able to do, need help learning how to do, and will be doing. “I” Care Plans are written in the first person, as if the person receiving care wrote it her- or himself, and express the desires of the individual for her or his care. Care plans can describe the risks that an individual is prepared to take in exercising his or her autonomous self-determination and choice. Creating the care plan should involve an interdisciplinary team of the care recipient, caregivers, including the nursing assistant, as well as the family as appropriate.

A caregiver is a spouse, family member, partner, friend, or neighbor who helps care for an elder or person with a disability who needs assistance.

Assistance for families in assessing the needs of older adults and making arrangements for services to help the older adult remain as independent as possible.

With a budget of approximately $650 billion and serving approximately 90 million beneficiaries, the Centers for Medicare & Medicaid Services (CMS) plays a key role in the overall direction of the healthcare system. With regard to long-term care, CMS is responsible for regulating and paying nursing homes, home health agencies, and hospices for the care of Medicare and Medicaid (in conjunction with the states) beneficiaries.

A person trained and certified to assist individuals with non-clinical tasks such as eating, walking, and personal care. (See
definitions for Personal Care and ADLs.) This person may be called a “direct care worker” (DCW). In a hospital or nursing home the person may be called a nursing assistant, a personal care assistant, or an aide.

Mrs. D did not want to come out for breakfast, so you bring it into her room and she seems
happy. You checkback with her and get her plates and make sure she is doing okay.
A family member is visiting and asks if it is okay for her to go in the kitchen and get her Mom a
snack. You have your arms full of towels and tell her, “ Of course, go right ahead.” After you put
the towels away you checkback with her and make sure she found everything she needed.

A CAG is a state or regional nonprofit organization dedicated to improving the quality of long-term care. Members of a CAG may include long-term care recipients, their families and friends, citizen advocates, long-term care ombudsmen, and organizations subscribing to the CAG’s purpose.

Clinical trials are research studies conducted in people to determine whether treatments are safe and effective. Clinical trials are the best way for researchers to find new ways to detect, slow, treat and hopefully someday prevent Alzheimer’s disease.

The process of knowing; of being aware of thoughts. The ability to reason and understand.

of, relating to, being, or involving conscious intellectual activity (such as thinking, reasoning, or
remembering) (Dictionary.com)

A diminished mental capacity, such as difficulty with short-term memory. Problems that affect how clearly a person thinks, learns new tasks, and remembers events that just happened or happened a long time ago. Problems that affect cognition. (See definition of cognition.)

General agreement. Group solidarity in belief. (Dictionary.com)

Residents receive care from the same caregivers (registered nurse, licensed practical nurse, direct care worker/certified nursing assistant) during a typical work week. Consistent assignments give the caregiver and resident the opportunity to build a close relationship, allowing the caregiver to gain a deep understanding of the resident and allowing the resident to develop a true level of comfort and trust with the caregiver.

A housing option that offers a range of services and levels of care. Residents may move first into an independent living unit, a private apartment or a house on the CCRC campus. The CCRC provides social and housing-related services and might have an assisted living residence and a nursing home, often called the health care center, on the campus. If and when residents can no longer live independently in their apartment or house, they move into assisted living (unless it is provided in their apartment or house) or the nursing home.

Dementia associated with impairment of the part of the brain that affects memory, attention, reasoning and abstract thinking, and arising from disease of the cerebral cortex.

A rare disorder caused by prions that typically leads to rapid decline in memory and cognition. Most people with this disease die within one year of onset.

Points from that module for you to print out and remember when you are working

The process of providing cues, prompts, hints and other meaningful information, direction or instruction—such as adding labels to drawers—to aid a person who is experiencing memory loss.

The common name given to the national movement for the transformation of older adult services, based on person-directed values and practices, where the voices of elders and those working with them always come first. Core person-directed values are choice, dignity, respect, self-determination and purposeful living. Culture change transformation supports the creation of both long- and short-term living environments as well as community-based settings where both older adults and their caregivers are able to express choice and practice self-determination in meaningful ways at every level of daily life. Culture change transformation may require changes in organizational and leadership practices, physical environments, relationships at all levels, and workforce models—leading to better outcomes for all involved. While culture change may focus on elders, it improves the quality of life for all care recipients.

an acutely disturbed state of mind that occurs in fever, intoxication, and other disorders and is
characterized by restlessness, illusions, and incoherence of thought and speech.
(Dictionary.com)

Dementia is not a specific disease. It’s an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities. Alzheimer’s disease is the most common type of dementia.

Low mood that prevents a person from leading a normal life. It’s more than feeling down or sad. It lasts longer and can affect sleep and appetite. When you’re depressed, you don’t get as much pleasure from things you used to enjoy.

See Undergarment.

An individual working in a nursing home or assisted living community that provides “hands on” help with activities of daily living (ADLs) to residents. (See Certified Nursing Assistant (CNA).

A DNR order, signed by a doctor based on a patient’s wishes, instructs medical personnel to not perform life-saving CPR or other procedures to restart the heart or breathing once they have ceased. Once signed, the DNR directive must be placed in the patient’s chart.

Well-being is the experience of health, happiness, and prosperity. It includes having good
mental health, high life satisfaction, and a sense of meaning or purpose. The domains are from
The Eden Alternative (see below) include: Autonomy, Connectedness, Growth, Joy, Identity,
Meaning and Security.

A syndrome that causes slowed growth, abnormal facial features and mental retardation. Down syndrome is caused by an extra copy of all or part of chromosome 21. Individuals with Down syndrome develop Alzheimer’s disease in adulthood.

A syndrome that causes slowed growth, abnormal facial features and mental retardation. Down syndrome is caused by an extra copy of all or part of chromosome 21. Individuals with Down syndrome develop Alzheimer’s disease in adulthood.

A legal document in which you can authorize another person, usually a trusted family member or friend, to make legal decisions when you are no longer able to do so yourself.

Not being able to find the right word or understand the meaning of a word.

An ultrasound of your beating heart which creates images with sound waves.

Any knowing, intentional or negligent act by a caregiver or any other person that causes harm or a serious risk of harm to a vulnerable older adult. The specificity of laws varies from state to state. Types of elder abuse may include

Physical Abuse—Inflicting, or threatening to inflict, physical pain or injury on a vulnerable elder, or depriving them of a basic need;

Emotional Abuse—Inflicting mental pain, anguish or distress on an elder person through verbal or nonverbal acts;

Sexual Abuse—Non-consensual sexual contact of any kind;

Exploitation—Illegal taking, misuse, or concealment of funds, property or assets of a vulnerable elder; Neglect—Refusal or failure by those responsible to provide food, shelter, health care or protection for a vulnerable elder;

Abandonment—The desertion of a vulnerable elder by anyone who has assumed the responsibility for care or custody of that person. The specificity of laws varies from state to state. (See National Center on Elder Abuse.)

An elder law attorney handles general estate planning issues and counsels clients about planning for the future with alternative decision-making documents. The attorney can also assist the client in planning for possible long-term care needs, including nursing home care. Not all attorneys specialize in elder law. Your local bar association or the  National Academy of Elder Law Attorneys  and your local chapter can refer you to elder law attorneys in your area.

Elderspeak is a specialized speech style used by younger adults with older adults, characterized
by simpler vocabulary and sentence structure, filler words, lexical fillers, overly-endearing
terms, closed-ended questions, using the collective “we”, repetition, and speaking more slowly.

It measures electrical signals from your heart and tells how fast your heat is beating and if it has a healthy rhythm.

It measures brain activity. The doctor or technician will place metal discs called electrodes on your scalp for this short test.

The executive functions are a set of processes that all have to do with managing oneself and
one’s resources in order to achieve a goal. It is an umbrella term for the neurologically-based
skills involving mental control and self-regulation.

Alzheimer’s disease that runs in families.

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 (professional healthcare workers). But many caregivers do not like the term informal because it incorrectly implies less skill and commitment.

Family members of nursing home or assisted living residents who join together to provide a consumer voice and perspective to communicate issues to administrators and work for resolution and improvement. Family Councils can play a crucial role in voicing concerns, requesting improvements, discussing the mission and direction of a nursing home or assisted living community, supporting new family members and residents, and supporting the residence’s efforts to make care and life in the home the best it can be. When Family Councils meet independently (without representatives of the nursing home or assisted living community) they are able to speak more freely and openly. Such independent family councils in nursing homes are supported by federal (and some state) legislation.

A feeding tube is a plastic or rubber tube to give food and water to someone who cannot eat or drink. A feeding tube can be put in through the nose (nasogastric) or the stomach wall (PEG tube).

Frontotemporal dementia (frontotemporal lobar degeneration) is an umbrella term for a
diverse group of uncommon disorders that primarily affect the frontal and temporal lobes of
the brain — the areas generally associated with personality, behavior and language.
In frontotemporal dementia, portions of these lobes shrink (atrophy). Signs and symptoms vary,
depending upon the portion of the brain affected.
Some people with frontotemporal dementia undergo dramatic changes in their personality and
become socially inappropriate, impulsive or emotionally indifferent, while others lose the
ability to use language.
Frontotemporal dementia is often misdiagnosed as a psychiatric problem or as Alzheimer's
disease. But frontotemporal dementia tends to occur at a younger age than does Alzheimer's
disease, generally between the ages of 40 and 45. (Mayo Clinic)

The umbrella term for the clinical syndromes of behavioral variant frontotemporal dementia (bvFTD), semantic dementia (SD) and progressive non-fluent aphasia (PNFA), which all affect the frontal and temoral lobes of the brain. This term is sometimes used to refer specifically to bvFTD.

How a person walks. People in the later stages of Alzheimer’s disease often have a “reduced gait” which means it has become harder for them to lift their feet as they walk.

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 and how their loved one is doing. Most geriatric care managers are privately paid and usually not covered by private insurance. Some long-term care insurance companies use care managers to assess the individual’s need for services and arrange for the needed services.

A medical doctor with special training in the diagnosis, treatment, and prevention of illness and disabilities in older adults.

The branch of medicine that focuses on providing comprehensive health care for older adults and the treatment of diseases associated with the aging process.

A professional trained in Gerontology. Gerontologists have a Masters or doctoral degree, either in Gerontology, or in another discipline (psychology, biology, social work, etc.) with a focus in gerontology.

The study of the aging process and individuals as they grow from midlife through later life including the study of physical, mental and social changes; the investigation of the changes in society resulting from our aging population; the application of this knowledge to policies, programs, and practice.

Grounding basically means to bring your focus to what is happening to you physically, either in
your body or in your surroundings, instead of being trapped by the thoughts in your mind that
are causing you to feel anxious.

An individual appointed by the courts who is authorized to make legal and financial decisions for another person.

a sensory experience of something that does not exist outside the mind, caused by various
physical and mental disorders, or by reaction to certain toxic substances, and usually
manifested as visual or auditory images. (Dictionary.com)

A professional providing medical, nursing, and other healthcare related services.

 A person trained to provide basic health care tasks for older adults and persons who are disabled, in their home. Tasks include personal care, light housecleaning, cooking, grocery shopping, laundry and transportation. Tasks may also include taking vital signs (such as heart rate and blood pressure) or applying a “dry dressing” for certain kinds of wounds. They are supervised by a registered nurse when they are employed by a home health agency.

Services given to patients at home by registered nurses, licensed practical nurses, therapists, home health aides, or other trained workers. Certified home health agencies often provide and coordinate these services. These services, provided on a short-term basis and ordered by a physician, are usually covered by Medicare and Medicaid. With Medicaid, there are differences in coverage between states.

Services provided in an individual’s home or a setting in the community, such as adult day services, senior centers, home-delivered meals, transportation services, respite care, housekeeping, companion services, etc. These services are primarily designed to help older people and people with disabilities remain in their homes for as long as possible. Many states have requested and received “Medicaid waivers” in order to enable low income Medicaid recipients to receive long-term care services in their own homes, adult day care, or an assisted living community instead of moving into a nursing home.

Meals brought to people who cannot prepare their own meals or are homebound (cannot leave their homes).

A program of medical and social services for people diagnosed with terminal (end-stage) illnesses that focuses on comfort, not curing an illness. Hospice services can be given at home, in a hospital, hospice residence, assisted living community, 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 and spiritual support. Medicare will pay for hospice if a doctor states that a person probably has six months or less to live. Hospice care can last longer than six months in some cases.

A small group of residents living within a physically-defined environment that “feels like home” and that has a kitchen, a dining room, and a living room. Staff is consistently assigned so they can develop meaningful relationships with the residents, work in self-led teams, and perform a variety of tasks. The sense of being at home is expressed in recognizing and honoring the rhythm of each individual’s life. For example, there is a wide variety of food accessible to residents around the clock, including breakfast-to-order and on demand. All residents in the household have opportunities to participate in the daily life of the household in a manner and to the extent they choose.

The U.S. Department of Housing and Urban Development (HUD) 202 Program offers subsidized housing and rental assistance for low-income individuals over 62 years of age who meet the eligibility requirements of the federal program. These housing communities often help residents access a variety of healthcare and supportive services as well as transportation.

A huddle is a short, stand-up meeting that is typically at the beginning of a shift. It also may be
called to get information across to all staff or to problem solve. (Link to more of a description)

An inherited, degenerative brain disease affecting the body that is characterized by mood changes, intellectual decline and involuntary movement of limbs.

This is often done by family members who become caregivers. Agencies also provide in-home care that is not medical in nature, including help with activities of daily living (ADLs) and instrumental activities of daily living (IADLs) or older adults or their families may hire in-home caregivers on their own. (See Definitions). Unlike home health care provided on a short-term basis, these services are not covered by Medicare but may be covered by Medicaid in your state.

Loss of bladder (urine) or bowel movement control. This condition can be transient, intermittent, or permanent. Incontinence nurse specialists and physicians can diagnose the kind of incontinence that is present and suggest ways to effectively manage the situation through exercises and timed toileting programs.

A residential location that may or may not provide hospitality or supportive services. Includes rental-assisted or market-rate apartments or cottages. Residents can choose which services they want. There may be an additional fee for some services.

A family member, friend, or any other person who provides long-term care, generally without pay.

A series of life tasks necessary for maintaining a person’s immediate environment, e.g., shopping for food and medications, cooking, laundering, house cleaning, managing one’s medication and finances. An elder may need help with IADLs and not need help with ADLs (See definition of ADL).

Labelling or using a label is describing someone or something in a word or short phrase. Usually
reducing their personhood down to one behavior, which is normally very inaccurate.

A Learning Circle is a group of individuals with a common interest who meet regularly to learn
from each other, and others, about a self-identified topic and in a format the group has decided
upon. Learning Circles are flexible, peer-directed learning experiences. Learning Circles are built
upon the idea that every member has something to contribute and that every member has
something to learn. (LINK to more of a description)

A song from the movie Frozen.

And what you should do if you are getting upset, frustrated or angry with the person you care for and they are not going to change to accommodate you. Let it go. If they are pacing and it calms them down but it drives you crazy. Let it go. If they are trying to unlock a lock that you lost the combination many years ago. Who is it hurting? Let it go. They taste the grapes in the grocery store and as a child the same person told you that was stealing. Who cares? Let it go.

In terms of their appearance, Lewy bodies are too small to see with the naked eye, but through the lens of a microscope, they typically appear as round bodies surrounded by a lighter halo. Lewy bodies are a buildup of a protein called alpha- synuclein, though the reason that these protein aggregations form in some brain cells and not others is still unclear and a matter of ongoing research. This pathology is involved in dementia with Lewy bodies and Parkinson’s disease dementia.

Lewy body dementia, also known as dementia with Lewy bodies, is the second most common
type of progressive dementia after Alzheimer’s disease dementia. Protein deposits, called Lewy
bodies, develop in nerve cells in the brain regions involved in thinking, memory and movement
(motor control).
Lewy body dementia causes a progressive decline in mental abilities. People with Lewy body
dementia may experience visual hallucinations and changes in alertness and attention. Other
effects include Parkinson’s disease-like signs and symptoms such as rigid muscles, slow
movement and tremors. (Mayo Clinic)

LPNs or LVNs have one to two years of technical training. They assist RNs (see definition of Registered Nurses) with data collection, care planning and monitoring residents’ conditions. They are licensed to administer medications and treatments, transcribe physician orders, etc. Most of the licensed nurses working in nursing homes are LPNs or LVNs, especially on the evening and night shifts.

A series of events that make up a person’s life; including everything in their past such as:
occupations, environments, people in their life, trauma, habits, etc.

An advance directive that guides your family and health care team through the medical treatment you wish to receive if you are unable to communicate your wishes. According to your state’s living will law, this document is considered legal as soon as you sign it and a witness signs it, if that is required. A living will goes into effect only when you are no longer able to make your own decisions.

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 care recipient’s home.

Private insurance designed to cover (pay for) long- term care services provided at home, adult day care, assisted living or a nursing home. There are many long-term care insurance policies with a wide range of benefits. Medicare and Medicare supplemental insurance policies (Medigap) do not pay for long-term care.

A variety of services and supports to meet health or personal care needs over an extended period of time. This includes medical and non-medical care to people with a chronic illness or disability. Long-term care helps meet health or personal needs. Most long-term care assists people with Activities of Daily Living (ADLs), such as dressing, bathing, and using the bathroom. Long-term care can be provided at home, in an adult day care center, an assisted living community, or a nursing home. In order for state Medicaid programs to pay for home care or assisted living for an individual that meets the income eligibility requirements, the individual must require a level of care equivalent to that received in a nursing home.

The federally- and state-supported, state-operated public assistance program that pays for healthcare services to low-income people, including older adults or disabled persons who qualify. Medicaid pays for long-term nursing home care and some limited home health services, and it may pay for some assisted living services, depending on the state. It is the largest public payer of long-term care services, especially nursing home care. Each state can determine the breadth and extent of what services it will cover above a certain federally required minimum.

The advance directive that allows you to select a person you trust to make decisions about your medical care if you are temporarily or permanently unable to communicate and make decisions for yourself. This includes not only decisions at the end of your life, but also in other medical situations. This document is also known as a “health care proxy,” “appointment of health care agent or health care surrogate,” or “durable power of attorney for health care.” This document goes into effect when your physician declares that you are unable to make your own medical decisions. The person you select can also be known as a health care agent, surrogate, attorney-in-fact, or health care proxy. With a medical power of attorney you can appoint a person to make health care decisions for you in case you are unable to speak for yourself.

A physician who oversees the medical care and other designated care in a healthcare organization or care setting. The medical director is responsible for coordinating medical care and helping to develop, implement, and evaluate resident care policies and procedures that reflect current standards of practice.

The federal program that provides medical insurance for people aged 65 and older, some disabled persons and those with end-stage renal disease. It provides physician, hospital, and medical benefits for individuals over age 65, or those meeting specific disability standards. Benefits for nursing home and home health services are limited to short-term rehabilitative care. There are different parts of Medicare which cover specific services if you meet certain conditions. For detailed information, visit the website (www.medicare.gov) or call for assistance: 1-800-Medicare.

 A transition stage between the cognitive decline of normal aging and the more serious problems caused by Alzheimer’s disease. The disorder can affect many areas of thought and action, such as language, attention, reasoning, judgment, reading and writing. However, the most common variety of mild cognitive impairment causes memory problems. According to the American College of Physicians, mild cognitive impairment affects about 20 percent of the population over 70. Many people with mild cognitive impairment eventually develop Alzheimer’s disease, although some remain stable and others even return to normal.

The Mini-Mental State Examination (MMSE) is a short test to measure a person's basic skills. These skills include short-term memory, long-term memory, writing and speaking.

It uses powerful magnets and radio waves to make pictures of organs and structures inside your body.

A form of dementia, also known as vascular dementia, caused by a number of strokes in the brain. These strokes can affect some intellectual abilities, impair motor and walking skills, and cause an individual to experience hallucinations, delusions or depression. The onset of MID usually is abrupt and often progresses in a stepwise fashion. Individuals with MID are likely to have risk factors for strokes, such as high blood pressure, heart disease or diabetes. MID cannot be treated; once nerve cells die, they cannot be replaced. However, risk factors can be treated, which may help prevent further damage.

Neurocognitive disorder is a general term that describes decreased mental function due to a
medical disease other than a psychiatric illness. It is often used synonymously (but incorrectly)
with dementia.

An accumulation of twisted protein (tau protein) fragments inside nerve cells. Neurofibrillary tangles are one of the characteristic structural abnormalities found in the brains of people with Alzheimer’s disease. Upon autopsy, the presence of myloid plaques and neurofibrillary tangles is used to positively diagnose Alzheimer’s disease.

A doctor who is trained to diagnose and treat disorders of the nervous system.

To be noncompliant is to be defiant and resistant to authority. When someone is compliant,
they go along with what others — especially people in authority — want them to do. When
someone is noncompliant, they resist authority. (Dictionary.com)

the quality or condition of being normal. (Dictionary.com)

A registered nurse with advanced education and training. NPs can diagnose and manage most common, and many chronic, illnesses. They do so alone or in collaboration with the health care team. NPs can prescribe medications and provide some services that were formerly permitted only to doctors. There are a number of types of nurse practitioners (e.g. geriatric, adult, or psychiatric) that work with older adults.

A residential care setting that provides 24-hour care to individuals who are chronically ill or disabled. Individuals must be unable to care for themselves in other settings or need extensive medical and/or skilled nursing care.

An Ombudsman is an advocate for residents of nursing homes, board and care homes, and assisted living. Ombudsmen provide information about how to find a nursing home or other type of LTC facility and what to do to get quality care. They are trained to resolve problems. An ombudsman can assist you with expressing complaints, but this requires your permission because these matters are held confidential. Under the federal Older Americans Act (OAA), every state is required to have an Ombudsman program that addresses complaints and advocates for improvements in the long-term care system. To find the ombudsman nearest you, visit the National Long-Term Care Ombudsman Resource Center at www.ltcombudsman.org.

Care that focuses on the relief of the 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 for end-of-life care, and it can include treatments that are intended to cure as well as comfort. It is both a philosophy of care (as is hospice) as well as an approach to caring activities. Palliative care is provided by trained staff in a hospital, home, nursing home, assisted living community or hospice. For more information, visit GetPalliativeCare.org or the National Hospice and Palliative Care Organization (NHPCO) (www.nhpco.org).

A progressive, neurodegenerative disease with an unknown cause characterized by the death of nerve cells in a specific area of the brain. People with Parkinson’s disease lack the neurotransmitter dopamine and have symptoms such as tremors, speech impediments, movement difficulties and often dementia later in the course of the disease.

An approach to care in which the voices of individuals needing care and those working closest with them always comes first. Core person-directed values include dignity, respect, purposeful living and having the freedom to make informed choices about daily life and health care. It involves a continuing process of listening, trying new approaches, seeing how they work, and changing routines and organizational approaches in an effort to individualize and de-institutionalize the care (e.g., nursing home or assisted living environment).

Non-skilled nursing service or care, such as help with bathing, dressing, eating, getting in and out of bed or chair, moving around, using the bathroom, or any other activity of daily living (ADL) required or desired by the individual needing care.

A positron emission tomography (PET) scan is an imaging test that helps reveal how your tissues
and organs are functioning. A PET scan uses a radioactive drug (tracer) to show this activity.
This scan can sometimes detect disease before it shows up on other imaging tests.
The tracer may be injected, swallowed or inhaled, depending on which organ or tissue is being
studied. The tracer collects in areas of your body that have higher levels of chemical activity,
which often correspond to areas of disease. On a PET scan, these areas show up as bright spots.
A PET scan is useful in revealing or evaluating several conditions, including many cancers, heart
disease and brain disorders. Often, PET images are combined with CT or MRI scans to create
special views.

The original name for the condition now known as behavioral variant frontotemporal dementia (bvFTD). Pick's disease is no longer used as a clinical description, but rather names a specific pathology that is one of the causes of frontotemporal lobar degeneration. A defining characteristic of the disease is build-up of tau proteins in neurons, accumulating into silver-staining, spherical aggregations known as “Pick bodies.”

A test that can show how an organ or tissue is working. For instance, it can show blood flow in the brain.

This term almost always refers to doctors, nurse practitioners or physician assistants who provide routine care and preventive care (before people are sick). PCPs diagnose and treat common medical problems, determine how urgent these problems are, and may refer patients to other specialists if needed. PCPs practice in the community, not a hospital or other healthcare facility. Some PCP’s follow their patients into the hospital, while others do not. Sometimes a “hospitalist” is assigned to the patient who will likely communicate with your PCP while you’re in the hospital.

A provider is typically a professional healthcare worker, agency, or organization that delivers health care or social services. Providers can be individuals (doctors, nurses, social workers, and others), organizations (hospitals, nursing homes, assisted living communities, or continuing care retirement communities), agencies (e.g., home care and hospice), or businesses that sell healthcare services or assistive equipment (e.g., colostomy care supplies, wheelchairs, walkers, etc).

Close or consistent questioning. Something you should never do with a person living with
dementia.

A graduate from a formal nursing education program (three to four years) who has passed a national examination and is licensed to practice by the state board. RNs assess, plan, implement, teach, and evaluate a person’s nursing care needs, along with the rest of the healthcare team. In addition, they may do data analysis, quality assurance, research implementation, and research. They work in all types of health care settings and educational programs. In addition to providing care to individuals, RNs also works with groups of people or populations to determine how to promote health and prevent problems on a larger scale.

Services to help restore mental and physical (bodily) functions lost due to injury or illness. Rehabilitation may be given at the hospital or in a nursing home, some assisted living residences, a special facility or the patient’s home. The types of services offered generally include physical therapy, occupational therapy, speech therapy, social services, and nursing.

A life review activity aimed at surfacing and reviewing positive memories and experiences.

the act or process of recalling past experiences, events, etc. (Dictionary.com)

A person who lives in a residential long-term care setting, such as a nursing home or assisted living community.

Required by nursing home regulation, the Resident Council gives persons living in care settings the opportunity to communicate concerns to administrators, work for resolutions and improvements, and provide feedback about new programs (e.g., food services). Independent and empowered Resident Councils can play a crucial role in voicing concerns, requesting improvements, supporting new residents and supporting efforts to make care and life in the care setting the best it can be.

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 elder’s home, a community- based setting such as adult day care, an assisted living facility, or a nursing home. It can be scheduled regularly (for example, two hours a week) or provided only when needed. This service can be particularly valuable for family members taking care of persons with dementia.

The Alzheimer’s Association’s nationwide identification, support, and registration program that assists in the safe return of individuals with Alzheimer’s disease or other dementias who wander and become lost.

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, diabetes monitoring), learning programs, creative arts and exercise classes.

Arrange in a particular order. Many persons living with dementia may have difficulty with sequencing.

This level of care includes help with more complex nursing tasks, such as monitoring medications, giving injections, caring for wounds, and providing nourishment by tube feedings (enteral feeding). It also includes therapies, such as occupational, speech, respiratory and physical therapy. This care can be given in a patient’s home or in a care setting. Most insurance plans require at least some level of skilled care need requiring the services of a licensed professional (such as a nurse, doctor, or therapist) before they will cover other home-care services.

You have to know a person’s SPECS.
Social
Physical
Emotional
Cognitive
Spiritual

There is said to be 3 stages and 7 stages, yet if you know a person living with dementia and you
look at the stage descriptions you will see that a person can be in Stage 2 and 4 or Stage 3 and
5. It is not person-centered to put anyone into a box, silo or stage and say this is how they will
be and how you should treat them.

Care or monitoring after hospitalization in a less intensive and less costly setting, such as a rehabilitation service in a nursing home or in a special unit in a hospital. Subacute care is usually short-term. Check with Medicare to see specifics of how it is covered. (See definition of Medicare.)

A group of patients, caregivers, family, friends, or others who meet with a facilitator to talk about their experiences, challenges, solutions, and emotions.

As used in long-term care, the word survey refers to the process a state agency uses to ensure that all nursing homes that receive federal and state funding are in compliance with state and federal regulations, including standards of care. All federally funded nursing homes are surveyed at least annually to ensure compliance with CMS (Center for Medicare & Medicaid Services) regulations. The results of the latest survey must be posted and readily accessible in all nursing homes and is also available online at Nursing Home Compare (www.medicare.gov/NHcompare/).

A protein in the body that aids in stabilizing the proteins that support the structure and shape of neurons and cellular transportation. Tau are abundant in neurons in the central nervous system and are less common elsewhere. Misfolded tau can no longer stabilize microtubules, and this pathology may harm brain cells. Researchers are currently investigating how the later accumulation of tangles of tau proteins interacts with existing a-beta plaques in the disease progression. Emerging evidence from tau PET imaging has revealed that the pattern of tau correlates tightly to brain atrophy, and even the nature of cognitive decline. For example, research shows that patients with word-finding difficulties tend to have more tau in the left hemisphere of the cortex, which processes language. About 40% of people with frontotemporal dementia have tau-positive inclusions. Tau inclusions also appear in the brains of people with corticobasal degeneration (CBD) and progressive supranuclear palsy (PSP).

A service that provides reassurance calls to check on the safety and well-being of older adults at home. These calls can also offer reminders, such as when to take medication. This type of service may be purchased or volunteer service organizations may provide it.

The Eden Alternative® is an international, non-profit 501(c)3 organization dedicated to creating
quality of life for Elders and their care partners, wherever they may live.

A move from one care setting (hospital, home, assisted living, nursing home) to another. Care during transitions involves coordination and communication among patients, providers, and family caregivers. For example, it is critical that there is a way to assure that the proper medication list is communicated from setting to setting.

This is the average percentage of staff who stop working at a care setting each year. Virtually all healthcare organizations (hospitals, nursing homes, assisted living, etc.) track and measure the number of staff who stop working (turnover) and the length of stay of staff (retention) in the same or similar jobs. A nursing home or assisted living community with high turnover rates means that new caregivers are constantly being hired and trained.

If your loved one needs to wear a Depends or other product like it, one way to start introducing this is to NOT call is a diaper. A diaper is for babies and no one like to be called a baby and feel helpless and dependent. Keep their dignity. Underwear. Undergarment. Brief.

See multi-infarct dementia or MID.

Vascular dementia is a general term describing problems with reasoning, planning, judgment,
memory and other thought processes caused by brain damage from impaired blood flow to
your brain.
You can develop vascular dementia after a stroke blocks an artery in your brain, but strokes
don't always cause vascular dementia. Whether a stroke affects your thinking and reasoning
depends on your stroke's severity and location. Vascular dementia can also result from other
conditions that damage blood vessels and reduce circulation, depriving your brain of vital
oxygen and nutrients. (MayoClinic.com)

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 assessing physical and mental health and how well the person is functioning at home. The visiting nurse consults with the physician regarding treatment plans, implements the treatment plan, and may education and train families and other caregivers to perform care tasks. Some, but not all, are affiliated with the Visiting Nurse Association of America agencies.

Visuospatial skills are the abilities to recognize and organize information when you see
something and then interpret what you see. Examples of this skill include reading, recognizing
shapes,making sense of floor patterns, and following a map.

Whenever I get fed up with life, I love to go wandering in nature. – Andrea Arnold

Well, I sing by night, wander by day. I’m on the road and it looks like I’m here to stay. – Bob Dylan

Not all who wander are lost. – J.R.R. Tolkien

Wandering is a label that we use for people who do not like to sit still, who want to walk, who are not content where they are, who are bored and are looking for something to do and feel the need to go somewhere due to maybe their past life story.

Let’s say a person living with dementia is upset we give them some ice cream and they are
okay, then they are upset again. We can’t keep giving them ice cream, we need to find out the
WHY. Why are they upset? If we don’t look for the WHY in any situation we will continue to
solve everything with band-aids and never get to the source of the issue and actually help the
person. (see band-aid)

The “Yes” portion of Yes and is telling the person you are communicating with that you are accepting what they say, Yes. The “And” builds upon that agreement of “Yes”. You can use this in all types of ways when communicating with a person living with dementia.

Mom: I want to go home. You: Yes and I understand. Tell me about your home.

Mom: I want some ice cream right now. You: Yes and so do I! Let’s finish making dinner first. I need your help.

Mom is crying and upset. You don’t know why. You: Yes I see you are sad (whatever emotion they are feeling) and I am so sorry. or Yes I see you are feeling frustrated and I don’t blame you.

Alzheimer’s affects people younger than age 65. Many people with early-onset are in their 40s and 50s. They have families, careers or are even caregivers themselves when Alzheimer’s disease strikes.