|AAA||Area Agencies on Aging|
|ACA||Affordable Care Act|
|ACL||Administration for Community Living|
|ADL||activity of daily living|
|ADRD||Alzheimer’s disease and related disorders|
|AoA||Administration on Aging|
|CHD||coronary heart disease|
|CMS||Centers for Medicare & Medicaid Services|
|COPE||care of older persons in the home environment|
|DOL||U.S. Department of Labor|
|EHR||electronic health record|
|FMLA||Family and Medical Leave Act|
|FRD||family responsibilities discrimination|
|HCBS||home- and community-based services|
|HHS||U.S. Department of Health and Human Services|
|HRS||Health and Retirement Survey|
|HRSA||Health Resources and Services Administration|
|IADL||instrumental activity of daily living|
|I/DD||intellectual and developmental disabilities|
|LGBT||lesbian, gay, bisexual, and transgender|
|LTSS||long-term services and supports|
|MFP||Money Follows the Person|
|NFCSP||National Family Caregiver Support Program|
|NHATS||National Health and Aging Trends Study|
|NIH||National Institutes of Health|
|NSOC||National Survey of Caregivers|
|OAA||Older Americans Act|
|PHR||personal health record|
|PTSD||post-traumatic stress disorder|
|RCT||randomized controlled trial|
|REACH||Resources for Enhancing Alzheimer’s Caregiver Health|
|SNF||skilled nursing facility|
|SSA||Social Security Act|
|SUA||state unit on aging|
|TDI||Temporary Disability Insurance|
|VA||U.S. Department of Veterans Affairs|
|VAMC||Veterans Affairs Medical Center|
|VHA||Veterans Health Administration|
Care recipient: Adults aged 65 or older, who need help from others due to functional or cognitive limitations, or a serious health condition.
Care team: Older adults and their families or friends (when desired by the older adult) and all health care and social service professionals who interact with individuals in their care.
Caregiver assessment: A systematic process of gathering information about a caregiving situation to identify the specific problems, needs, strengths, and resources of the family caregiver, as well as the caregiver’s ability to contribute to the needs of the care recipient. A family caregiver assessment asks questions of the family caregiver. It does not ask questions of the care recipient about the family caregiver.
Caregiver or family caregiver1: Family caregivers are relatives, partners, friends, or neighbors who assist an older adult (referred to in this report as a care recipient) who needs help due to physical, mental, cognitive, or functional limitations. The caregiver’s involvement is driven primarily by a personal relationship rather than by financial remuneration. Family caregivers may live with, or apart from, the person receiving care. Care may be episodic, or of short or long duration.
Caregiving: Providing help to an older adult who needs assistance because of physical, mental, cognitive health, or functional limitations, including help with self-care; carrying out medical/nursing tasks (e.g., medication management, tube feedings, wound care); locating, arranging, and coordinating services and supports; hiring and supervising direct care workers (e.g., home care aides); serving as an “advocate” for the care recipient during medical appointments or hospitalizations; communicating with health and social service providers; and implementing care plans.
Eldercare: Care of older adults who need daily help because of health or functioning reasons. Eldercare is generally provided by family members, but can also be provided by paid help in the home, or in care settings such as assisted living or nursing homes.
End-of-life care: Refers generally to the care received by people who are nearing the end of life. This care may include a range of services to address
1 The term “caregiver” sometimes means health and social service professionals (e.g., physicians, nurses, or social workers) as well as direct care workers (e.g., home care aides) because they are paid for their services and have training to provide care to the older adult.
a person’s medical, social, emotional, and spiritual needs. Disease-specific interventions as well as palliative and hospice care for those with advanced serious conditions are considered forms of end-of-life care.
Family: Not only people related by blood or marriage, but also close friends, partners, companions, and others whom individuals would want as part of their care team.
Family leave: A period of time away from a job for specified family reasons such as to care for a spouse, child, or parent who has a serious health condition. Family leave can be paid or unpaid.
Family responsibilities discrimination (or caregiver discrimination): Employment discrimination against someone based on his or her family caregiving responsibilities and the assumption that caregivers are not dependable or less productive than their peers.
“Frail” and “frailty”: A clinical syndrome characterized by the presence of at least three of the following: unintentional weight loss (10 lbs. in the past 12 months), self-reported exhaustion, weakness (grip strength), slow walking speed, and low physical activity.
“High-need” care recipients: Older adults who have probable dementia or need help with at least two self-care activities (i.e., bathing, dressing, eating, toileting, getting in and out of bed).
Long-term services and supports (LTSS): An array of paid and unpaid personal care, health care, and social services generally provided over a sustained period of time to people of all ages with chronic conditions and with functional limitations. Services can include personal care (e.g., bathing or dressing), help with medication management, paying bills, transportation, meal preparation, and health maintenance tasks. Services can be provided in a variety of settings such as nursing homes, residential care facilities, and individual homes.
Paid sick leave: Provides pay protection to sick or injured workers for a fixed number of paid sick days per year. Some employers also allow workers to use sick leave to care for an ill family member, or to accompany a family member to a medical appointment.
Palliative care: Care that provides relief from pain and other symptoms, supports quality of life, and is focused on people with serious advanced illness and their families. Palliative care may begin early in the course of
treatment for a serious illness and may be delivered in a number of ways across the continuum of health care settings, including in the home, nursing homes, long-term acute care facilities, acute care hospitals, and outpatient clinics.
Patient-centered care: Health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care.
Person- and family-centered care: An approach to the planning and delivery of care across settings and time that is centered in collaborative partnerships among individuals, their defined family, and providers of care. It supports health and well-being by being consistent with, respectful of, and responsive to an individual’s priorities, goals, needs, cultural traditions, family situation, and values. Core domains of person- and family-centered care include the support and involvement of family as defined by each individual.
Respite care: Services designed to allow family caregivers to have time away from their caregiving role. Respite can be provided at home, through adult day services in the community, or by short-term stays in a facility or retreat setting. Respite is planned or emergency services that result in some measurable improvement in the well-being of the caregiver, care recipient, and/or family system.