Glossary

Dementia care, A to Z

103 words a family meets in the first year, each in about a hundred plain ones. Every entry names a source you can check, and links to the guidance for your own city. No jargon and no medical advice.

By subject

A

Activities of daily living (ADLs)
Activities of daily living are the basic self-care tasks: bathing, dressing, eating, toileting, continence and moving from bed to chair.
Adult day program
An adult day program is a supervised daytime setting, usually weekdays, offering activities, meals and care for older adults, including many with dementia.
Advance directive
An advance directive is a written statement of what medical treatment a person would want if they could not speak for themselves, usually combining a living will and a healthcare proxy.
Aggression
Aggression in dementia is shouting, threatening, hitting or pushing, most often during personal care and most often from fear rather than anger.
Agitation
Agitation in dementia is restlessness, pacing, distress or irritability, usually a response to something the person cannot express in words.
Agnosia
Agnosia is the inability to recognise objects, faces, sounds or smells despite the senses working normally.
Aid and Attendance (VA)
Aid and Attendance is an extra monthly payment from the Department of Veterans Affairs for eligible veterans or surviving spouses who need help with daily activities.
Alzheimer's disease
Alzheimer's disease is the most common cause of dementia, a progressive brain disease that usually begins with difficulty remembering recent events.
Amyloid and tau
Amyloid and tau are two abnormal proteins that accumulate in the brain in Alzheimer's disease, and can now be measured by scan or spinal fluid test.
Anosognosia
Anosognosia is a person's inability to recognise that they have an illness, caused by the brain changes themselves rather than by denial.
Anti-amyloid therapy
Anti-amyloid therapies are infused antibody drugs that clear amyloid from the brain and have been shown to slow decline modestly in early Alzheimer's disease.
Antipsychotics in dementia
Antipsychotic drugs are sometimes prescribed for distressing behaviour in dementia, and they carry a boxed warning about increased risk of death in older people with dementia.
Aphasia
Aphasia is difficulty with language: finding words, understanding speech, reading or writing, caused by damage to the language areas of the brain.
Apraxia
Apraxia is the loss of the ability to carry out a learned physical task on request, despite having the strength and understanding to do it.
Area Agency on Aging
An Area Agency on Aging is a local public body, funded under the Older Americans Act, that coordinates services for older people in a defined area.
Assisted living
Assisted living is a residential setting where people have their own room or apartment and receive help with daily activities, meals and medication, but not skilled nursing.
Assistive equipment
Assistive equipment is the practical kit that makes a home safer and care easier: grab bars, raised toilet seats, shower chairs, hospital beds, hoists and walking aids.

C

Capacity
Capacity is the ability to understand a specific decision, weigh the options and communicate a choice, and it is decision-specific rather than all-or-nothing.
Care plan
A care plan is a written record of what help a person needs, when, who provides it and what to do if something changes.
Caregiver burnout
Caregiver burnout is physical and emotional exhaustion from sustained caregiving, often with resentment, withdrawal and declining health of the caregiver themselves.
Caregiver matching
Caregiver matching is the process of pairing a family with a caregiver whose skills, availability and personality suit the person needing care.
Catastrophic reaction
A catastrophic reaction is a sudden, disproportionate outburst of distress, anger or tears in response to something small, when a person with dementia is overwhelmed.
Cholinesterase inhibitors
Cholinesterase inhibitors, such as donepezil, rivastigmine and galantamine, are drugs that can modestly ease symptoms of dementia for a period.
Cognitive assessment and care plan visit
A cognitive assessment and care plan visit is a separate appointment that Medicare Part B covers to review thinking and memory in full, establish or confirm a diagnosis, and produce a care plan.
Cognitive screening tests (MMSE, MoCA)
Cognitive screening tests are short standardised questionnaires, such as the MMSE or MoCA, that give a rough score of thinking ability in about ten minutes.
Companion care
Companion care is non-medical in-home help focused on supervision, company and daily tasks rather than hands-on personal care.

D

Delirium
Delirium is a sudden, usually reversible state of confusion caused by illness, infection, medication or surgery, and it is not the same as dementia.
Delusions
A delusion is a fixed false belief, commonly in dementia that money has been stolen, that a spouse is unfaithful, or that the house is not their home.
Dementia
Dementia is not one disease but a term for a decline in memory, thinking or reasoning severe enough to interfere with daily life.
Dementia clinical trials
A clinical trial tests whether a new treatment, test or way of caring for people is safe and works, using volunteers, and many dementia trials also enrol caregivers or healthy participants.
Deprescribing
Deprescribing is the planned reduction or stopping of medicines that are no longer helping or may be doing harm, supervised by a prescriber.
Disinhibition
Disinhibition is a loss of social restraint: saying blunt or offensive things, undressing in public, or spending money impulsively.
Driving and dementia
Dementia eventually makes driving unsafe, and deciding when to stop is one of the hardest and most contested conversations a family has.
Durable medical equipment
Durable medical equipment is equipment for use at home, such as a cane, crutches or a commode chair, that Medicare Part B covers when a doctor orders it.
Dysphagia
Dysphagia is difficulty swallowing, which becomes common in later dementia and carries a risk of food or drink entering the lungs.

E

Early-onset dementia
Early-onset, or younger-onset, dementia is dementia diagnosed before the age of 65.
Elder law attorney
An elder law attorney is a lawyer who specialises in the legal needs of older adults: powers of attorney, guardianship, Medicaid planning and estate matters.

F

Fall prevention
Fall prevention is the set of measures that reduce a person's risk of falling: exercise, medication review, vision checks, lighting, footwear and home changes.
Financial exploitation
Financial exploitation is the improper use of an older person's money or property, by a stranger, a professional or, most often, someone they know.
Frontotemporal dementia
Frontotemporal dementia is a group of dementias affecting the front and sides of the brain, showing first as changes in personality, behaviour or language rather than memory.

G

Geriatric care manager
A geriatric care manager, also called an aging life care professional, is a paid professional, usually a nurse or social worker, who assesses an older person's needs and coordinates their care.
Geriatrician
A geriatrician is a doctor with additional training in the medical care of older adults, including dementia, multiple conditions at once and complex medication.
Guardianship and conservatorship
Guardianship is a court process that appoints someone to make decisions for an adult judged unable to make them, and conservatorship is the equivalent for finances in many states.
GUIDE Model
The GUIDE Model is a Medicare program for people with dementia and their family caregivers that provides care coordination, a round-the-clock support line, caregiver training and up to $2,500 a year toward respite.

H

Hallucinations
A hallucination is seeing, hearing or feeling something that is not there, and in dementia it is most often visual.
Home health agency
A home health agency is an organisation that provides skilled nursing and therapy at home, and is certified and star-rated by Medicare.
Home health aide
A home health aide is a trained, usually certified, worker who provides personal care at home, often under a nurse's supervision as part of a home health agency's service.
Home safety assessment
A home safety assessment is a room-by-room check of a house for the hazards dementia makes dangerous: stairs, stove, medications, water temperature, exits, lighting and trip hazards.
Hospice
Hospice is comfort-focused care for someone expected to live six months or less, provided at home or in a facility and covered in full by Medicare.
Hospital discharge planning
Discharge planning is the process of arranging where a patient goes and what care they get when they leave hospital, done by a discharge planner or social worker.

I

Incontinence
Incontinence is loss of bladder or bowel control, which becomes common in middle and later dementia and has causes beyond the dementia itself.

L

Lewy body dementia
Lewy body dementia is a dementia marked by fluctuating alertness, visual hallucinations, movement problems like those of Parkinson's disease, and acting out dreams during sleep.
Live-in care
Live-in care is an arrangement where a caregiver lives in the person's home, typically working a long day with a sleep period, so someone is always present.
Location devices and ID
Location devices and identification schemes help find a person with dementia quickly if they leave home and cannot find their way back.
Long-term care insurance
Long-term care insurance is a private policy bought in advance that pays a daily or monthly benefit toward care at home or in a facility.
Long-term care ombudsman
A long-term care ombudsman is a free, government-backed advocate who investigates complaints about nursing homes, assisted living and similar facilities on behalf of residents.
Look-back period
The look-back period is the window, five years in most states, during which Medicaid reviews any assets a person gave away or sold below value before applying.

M

Medicaid
Medicaid is the joint federal and state programme that pays for long-term care for people with low income and few assets, and it is the largest payer of long-term care in the United States.
Medicaid waiver
A Medicaid waiver is a state programme that pays for care at home or in the community for people who would otherwise qualify for a nursing home.
Medicare
Medicare is federal health insurance for people 65 and over, and it does not pay for long-term custodial care at home or in a nursing home.
Medicare yearly wellness visit
The Medicare yearly wellness visit is a check-in covered once every 12 months that includes a cognitive assessment to look for signs of dementia.
Medication management
Medication management in dementia means making sure the right drugs are taken at the right time, by someone other than the person with dementia.
Memantine
Memantine is a drug used in moderate to severe Alzheimer's disease that works differently from cholinesterase inhibitors and is sometimes given alongside them.
Memory care
Memory care is care designed specifically for people with dementia, whether delivered in a dedicated facility unit or at home by caregivers trained in dementia.
Memory clinic
A memory clinic is a specialist service, usually at a hospital or university, that assesses people with memory or thinking problems and diagnoses the cause.
Mild cognitive impairment (MCI)
Mild cognitive impairment is a decline in memory or thinking that is noticeable and measurable but not severe enough to interfere with daily life.
Mini-Cog
The Mini-Cog is a three-minute screening test for cognitive impairment that combines remembering three words with drawing a clock.
Mixed dementia
Mixed dementia is when more than one disease is causing a person's dementia at the same time, most commonly Alzheimer's disease together with vascular damage.
Music in dementia care
Familiar music can reduce agitation, prompt speech and lift mood in dementia, often when other approaches have stopped working.

N

Neurologist
A neurologist is a doctor specialising in the brain and nervous system, and is often the specialist who confirms which type of dementia a person has.
Neuropsychological testing
Neuropsychological testing is a structured set of tasks, given by a psychologist, that measures memory, attention, language, reasoning and other thinking skills in detail.
Non-drug approaches
Non-drug approaches are the first-line responses to distress in dementia: music, routine, exercise, light, activity, familiar objects and changes to the environment.
Normal pressure hydrocephalus
Normal pressure hydrocephalus is a build-up of fluid in the brain's ventricles, most common in older adults, that causes trouble walking, loss of bladder control and memory problems, and can look very like dementia.

O

Overnight care
Overnight care is a caregiver present through the night, either awake or on call, so a family member can sleep.

P

PACE
PACE, the Program of All-Inclusive Care for the Elderly, is a Medicare and Medicaid programme that provides all of a person's care through one team so they can stay at home.
Pain in dementia
Pain in dementia is frequently missed, because a person who cannot report it shows it through agitation, resistance to care, groaning or withdrawal instead.
Palliative care
Palliative care is specialist care focused on relieving symptoms and stress from a serious illness, and it can be given at any stage, alongside treatment.
Parkinson's disease dementia
Parkinson's disease dementia is dementia that develops in someone who has had Parkinson's disease, usually years after the movement symptoms began.
Person-centered care
Person-centered care means organising care around who the individual is, their history, habits and preferences, rather than around tasks and schedules.
Personal care
Personal care is hands-on help with the physical activities of daily living: bathing, dressing, toileting, moving and eating.
POLST
A POLST is a set of portable medical orders for a person with a serious illness or frailty, turning their treatment wishes into instructions that medical staff follow.
Posterior cortical atrophy
Posterior cortical atrophy is a rare dementia in which the first symptoms are visual: difficulty judging distance, reading, or recognising objects, despite healthy eyes.
Power of attorney
A power of attorney is a legal document in which a person appoints someone else to make decisions on their behalf; for dementia, the important kinds are durable financial and healthcare powers of attorney.
Primary progressive aphasia
Primary progressive aphasia is a dementia in which the loss of language is the first and dominant symptom, while memory and reasoning are relatively preserved early on.
Private pay
Private pay means paying for care from the family's own money, rather than through Medicare, Medicaid, insurance or the VA.

R

Redirection
Redirection is a technique in which, instead of arguing with a distressing belief or request, the caregiver acknowledges the feeling and gently shifts attention to something else.
Reminiscence therapy
Reminiscence therapy uses photographs, music, objects and familiar stories from a person's past to prompt memory, conversation and pleasure.
Repetition
Repetition is when a person with dementia asks the same question, tells the same story or repeats the same action over and over, often within minutes.
Respite care
Respite care is short-term care for a person with dementia so their usual caregiver can take a break.

S

Shadowing
Shadowing is when a person with dementia follows their caregiver constantly, from room to room, and becomes anxious when left alone even briefly.
SHIP (State Health Insurance Assistance Program)
A SHIP is a State Health Insurance Assistance Program: a local service in every state that gives one-to-one, unbiased counselling on Medicare.
Skilled nursing facility
A skilled nursing facility, commonly called a nursing home, provides round-the-clock nursing care, and is federally regulated and rated by Medicare.
Sleep disturbance
Sleep disturbance in dementia means broken nights, day and night reversal, or acting out dreams, and it is one of the commonest reasons families seek help.
Social Security Disability (SSDI)
Social Security Disability Insurance pays benefits to people who can no longer work because of a medical condition, including dementia diagnosed before retirement age.
Spend-down
Spend-down is the process of using a person's own assets on their care until they fall below the threshold at which Medicaid will start paying.
Stages of dementia
The stages of dementia are a way of describing progression, most often as early, middle and late, or on a seven-point scale from no impairment to very severe decline.
Sundowning
Sundowning is a pattern where confusion, agitation or anxiety in a person with dementia gets worse in the late afternoon and evening.
Support group
A dementia support group is a regular meeting, in person or online, where family caregivers talk with others in the same situation, usually led by a trained facilitator.

V

VA Caregiver Support Program
The VA Caregiver Support Program helps family caregivers of veterans, through general support open to many caregivers and a more intensive program that can include a monthly stipend.
Validation
Validation is an approach that accepts the emotional reality a person with dementia is experiencing rather than correcting the facts of it.
Vascular dementia
Vascular dementia is dementia caused by reduced blood flow to the brain, most often after strokes or from damage to small blood vessels.

W

Wandering
Wandering is when a person with dementia walks away from a safe place, often without being able to find the way back.
Weight loss in dementia
Unintended weight loss is common in dementia and can be caused by forgetting to eat, difficulty swallowing, depression, dental pain or the disease itself.

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