Long-term care is generally provided along a continuum of care, from minor supporting services such as assistance with the basic instrumental activities of daily living (IADLs) to extensive nursing and therapeutic services, depending upon the individual’s condition and needs at a particular time.
Ideally, individuals needing long-term care would receive an appropriate mix of services in an appropriate environment that permits maximum independence. Reflecting this evolutionary process, activities of daily living fall into two categories: those activities that can be performed on a scheduled basis, and those that must be taken care of on demand.
The distinction between schedules and on-demand ADL needs is important, given the demands on caregivers and the cost of services today.
When ADL needs are limited to those that can be scheduled (i.e.: bathing and dressing), an individual can often live at home and be cared for by a family member or friend. If outside paid services are necessary, they can often be limited to one or two hours a day.
When ADL needs are on demand, care must be provided on a continuous 24 hour basis, and if done so through outside services, can be prohibitively expensive.
Informal care, as opposed to formal care, means long-term care services for which the provider is not paid.
Based on the traditional continuum of long-term care, older Americans and their families had few choices when faced with an Elder’s inability to care for themselves.
Beginning with a few visits a week to their homes and with the help of friends and neighbors, the individual could remain somewhat independent.
As care becomes more on-demand so does the burden on the family increase. Relying entirely on the family often places an overwhelming burden on adult children and grandchildren.
Today, the family home care scenario may be impossible. Families are not likely to have the necessary skills to provide medical care.
Cost of long-term care can be devastating for the extended family. Care-giving at home is often extremely demanding, physically and emotionally.
And finally, in today’s society of two career families, fewer and fewer families have someone at home to provide care on a continuous basis.
Fortunately, in recent years, a great increase in the number and kinds of home care services has meant that more elders who need care can either remain at home or live with relatives without putting undue stress on the family.
Formal Care – Non-Institutional
The formal care means long-term care services for which the provider is paid and are typically provided in the home or community, initially, such as Meals on Wheels.
Formal Home Care
Home care is a loosely used, largely confused term that probably refers to a wide range of medical and non-medical services in the home.
Often used interchangeably with the term “home health care”, it nonetheless encompasses the full range of home-based services, from rehabilitative and therapeutic nursing services to personal care, homemaker and companion services.
The availability of services from within this range often vary widely from community to community.
Meals on Wheels delivers nutritionally sound meals five or more days a week to those who cannot purchase their own groceries or prepare meals. Another option, congregate meal sites, provides both food and company and is often available at senior centers, housing projects, churches, synagogues, or schools, where free or low-cost meals are offered and transportation is sometimes provided.
Home delivered meals and those offered at congregate nutrition sites are often subsidized and inexpensive. In most cases, these programs are low-cost or free.
Call the National Meals on Wheels foundation, 1- 800 – 999 – 6262, to find out if there is a program in your town. The Elder Care Locator can also help you locate meals programs.
Friendly Visitors and Companion Services
Volunteers, sometimes called friendly visitors, make regular visits to ailing or homebound older adults. Companionship can alleviate loneliness and isolation and give additional advice and help to family caregivers. Volunteers may just talk, read, or help with writing letters.
Look for these kinds of services through State or area agencies on aging; local churches and synagogues; neighborhood groups and other local social organizations; Civic, social, or volunteer organizations; health agencies; friendly visitors or senior companion programs; YMCA/YWCA; city recreation departments; youth organizations; and hospice volunteers.
When the services are provided by volunteers, they are typically free. When provided by a home health agency, there is a charge that varies according to the training of the companion and other factors. Some social service agencies may provide services on a sliding scale or for free.
Telephone reassurance systems provide daily or regular contact for persons who live alone. Each day the older person called in at a predetermined time, or volunteer will call the person. If contact isn’t made, a volunteer alert someone.
To find a service, contact the police department, local hospitals, senior centers, religious groups and social service organizations, civic or fraternal organizations, or, sometimes, home health agencies.
In some communities, letter carriers and utility workers are trained to identify homebound elderly and to spot signs of trouble.
Contact the public utility or Postal Service community service department or check with your State or area agency on aging. Some communities organize their own community watch program, with volunteers from the neighborhood taking turns making scheduled patrols.
Long Distance Caregiving
Whether you’re older relative lives nearby or in another State, the Elder Care Locator can refer you to the information and assistance source in their community.
Social workers, clergy, nurses, physicians and employee counselors may be able to refer you to appropriate services. Neighbors and friends that have used similar services can provide direction.
The government section of your local telephone directory is filled with information. Some examples of headings include City or County Aging Department. Social security administration, home care services, human services, mayors or governor’s office on aging. There may be personnel in these offices to offer information about other services. Other agencies which offer excellent information and referral services include the United Way, Family Services of America and religious social service organizations, such as Jewish Family Services, Catholic Charities and Protestant Welfare Agencies.
Formal Home Health Care
Even people who were seriously ill or dying may be treated at home.
Nurses, therapists, and other licensed healthcare professionals can bring skilled medical care into the home. Homemaker/home health aides also are an invaluable part of the healthcare team.
Home health-care covers the use of assistive devices, including crutches, canes, walkers, IV setups, hospital beds, wheelchairs, ostomy supplies, prosthesis, and oxygen.
Home care agencies, both private and public, offer a range of services, from assisting an individual’s needs to putting together and arranging care.
You can find home health care through State or area Agencies on Aging, social service agencies, public Department of Family Services, private home care agencies, Red Cross, Visiting Nurses Association, public health department, hospital social services or discharge planning, United Way and the Yellow Pages.
Home health care services reimbursed by Medicare or Medicaid are very limited in must be prescribed by a physician.
Agencies that provide only health aid in homemaker services (for help around the house and personal care) are not Medicare certified, because Medicare certifies only agencies that offer skilled nursing services.
Personal care services may be covered by Medicare if skilled nursing services are being provided. Homecare often requires special equipment, such as a hospital bed, safety bars in the bathroom, raised toilet seats, or monitoring devices; Medicare and Medicaid cover some of these assistive devices if prescribed by a physician.
Chore services include minor household repairs, cleaning, and yard work. Homemaker/home health aides offer non-medical services to assist older persons in the home, such as bathing, dressing, cooking, cleaning, laundry, and running errands.
State or area agencies on aging, social services departments, religious groups, and service and civic organizations and clubs may provide chore services. The Red Cross, Visiting Nurses Association, home care agencies, or local area Agencies on Aging may offer homemaker services. Check the Elder Care Locator for services near you.
If your loved one is receiving Medicare “skilled” home health care services, such as nursing or physical therapy, Medicare will cover a homemaker/home health aide to help with personal care.
Your local Social Security office can provide information. For those with low incomes, Medicaid will sometimes help. Check your local Medicaid office.
Formal Care: Respite Care
Like adult day care, respite care serves as a break in routine for both those who give and those who receive care.
It provides companionship and monitoring, often by volunteers, for short periods of time on regular or occasional basis, a few times a week, one weekend a month, or for a full weekend or week when primary caregivers are unavailable.
Respite care can be provided at home, at a church or community center or in a nursing facility.
Formal Care: Adult Day Care
Adult day care centers provide different levels of medical care and therapy, along with meals, companionship, activities and social services. They offer family caregivers who work an alternative to using full-time providers at home.
Participants in adult day care may stay for a half or full day, one to five days a week. In addition to medical services, adult day care centers provide meals and snacks, personal care assistance, exercise, recreation and outings and educational programs.
Typically, adult day care services are provided in four types of centers:
Adult Day Care (ADC) centers are community-based programs that provide non-medical care to persons 18 years of age or older in need of personal care services, supervision or assistance essential for sustaining the activities of daily living or for the protection of the individual on less than a 24 hour basis.
Adult Day Support Center (ADSC) is a community-based program that provides non-medical care to meet the needs of functionally impaired adults. Services are provided according to an individual plan of care in a structured comprehensive program that will provide a variety of social, psychological and related support services in a protective setting on less than a 24 hour basis.
Adult Day Health Care (ADHC) centers are community-based programs that provide medical, rehabilitative and social services to elderly persons and other adults with functional impairments, either physical or mental, for the purpose of restoring or maintaining optimal capacity for self care. These centers provide services through an individual plan of care and target adults were at the institutional level of care or at risk of institutional placement.
Alzheimer Day Care Resource Center (ADCRC) is a community-based program that provides day care for persons in the moderate to severe stages of Alzheimer’s disease or other related dementias, and provides various support and educational services or family caregivers and the community at large.
ADCRCs identify the psychosocial, mental, functional and cognitive needs of these participants, and assist participants to operate at the highest level possible within individual degrees of mental and physical capacity. Although the law permits ADCRCs to function without a license, the majority of these programs are located in licensed facilities under an established licensure category. CDA administers the program, and grants State general funds to eligible applicants as authorized by legislation.
Formal Care: Hospice Care
Hospice care is outpatient care that is designed to provide palliative care (to make less severe, without curing; to reduce pain), alleviate the physical, emotional, social and spiritual discomforts of an individual who is experiencing the last phases of life, aides offer non-medical services to assist older persons in the home, such as bathing, dressing, cooking, cleaning, laundry, and running errands.
When Care at Home Is Not Enough
Unfortunately, though, home care is currently practical only for those people with a limited need for assistance – one that does not involve extensive medical treatment or continuous care or observation.
Despite an increase in available home care and senior housing, one out of every two women and one out of three men over age 65 will enter a nursing facility sometime in their lives. The stay may be a long one; of those who enter nursing homes, 55% will have total lifetime use of it least one year, and 21% will have a total lifetime use of five years or more.
Although there are different levels of care in nursing facilities, all involve full-time residence and include room and board, monitoring, personal assistance, nursing and other health care for people who are physically or mentally unable to attend to all their own needs.
Depending upon the level of care needed, long-term care services are often classified into three phases of life due to the existence of a terminal disease, categories: Skilled Care, Intermediate Care and/or Custodial Care.
What is skilled care?
Skilled care is medically necessary care provided continuously, day in and day out, by licensed medical professionals (doctors, nurses, therapists) working under the order of, or direct supervision of, a physician.
What is intermediate care?
Intermediate care is nursing and rehabilitation services. Supervision by a physician is required. Licensed personnel, such as registered nurses and therapists, are required for some intermediate care services, but not necessarily on a continuous or daily basis. Other intermediate care services may be provided by licensed practical nurses and nurses aides.
What is custodial care?
Custodial care is assistance care primarily for the purpose of meeting daily living requirements; getting in and out of bed, dressing, walking, bathing, eating or taking medication. Licensed medical personnel are not required.
Custodial care is the type of care Alzheimer’s disease patients receive and is the level of care that last the longest. Sometimes it is delivered after skilled or intermediate care, but most often it is the result of the body simply getting old.
Custodial care is the least expensive daily cost, but over the long term, it is the most expensive level of care because of the length of time it’s needed. This is the type of care that can slowly eat away at or even destroy an individual’s assets/estate.
Facility/Institutional Care: Continuing Care Retirement Communities (CCRC)
A master-planned, age restricted development that offers a variety of living arrangements and levels of services.
The object of a continuing care retirement community (CCRC) is to allow residents to age in place by providing independent living, congregate living, assisted living, and skilled nursing care at a single location.
Residents may move from one level to another if their needs change. Some CCRCs are fully licensed, while others are only licensed as an RCFE or ALF to provide ambulatory and personal care. The skilled nursing component must be licensed by the State Department of Health to offer skilled nursing services.
When looking into this type of lifestyle, you must clarify the type of contracting care that is included in your agreement.
There are very few “Life Care” communities due to the fact these communities provide unlimited care for the rest of your life, even if you run out of funds. Continuing care retirement communities offer a specified number of days per year of additional care only and may require the resident to relocate out of the community (i.e.: to a separate nursing facility).
The contract for care in such communities is intended to remain in effect for more than one year, usually for the rest of one’s lifetime.
These contracts represent the long-term commitment to provide continuing care to the community resident. These contracts cover housing, services, and nursing care – usually in one location – coordinated or directly managed by a single administrator who is accountable to the community’s Board of Directors.
Hospital care, medical service, and physician visits are rarely included, though the community may schedule appointments and provide transportation.
Continuing care contracts often, although not always, require an entrance fee, accommodation fee, or endowment, less monthly fees that cover, in advance, some or all services and care as a form of insurance for ones later years.
Other communities allow one to pay for services as needed. At a minimum, the contract guarantees access to nursing care services if you should ever need this type of care; at a maximum, it covers the full cost of nursing care (usually in a life care contract).
Facility/Institutional Care: Congregate Housing/Independent Living
Provides a residential environment with more shared common space and service supports than fully independent living facilities.
While residents still live independently in their own apartments, congregate housing include centralized dining services and such support services as transportation, social and recreational programs, and housekeeping.
These communities offer similar services as assisted living/personal care communities, it can be licensed by the State Department of social services, community care licensing division as a residential care facility for the elderly (RCFE) or assisted living facility (ALF) or non-licensed offering limited services.
Facility/Institutional Care: Board and Care Homes/Adult Foster Homes
This term originated through the Department of Social Services for residential care facility for the elderly (RCFE), and applies primarily to small converted single-family homes.
Housing must be licensed and can provide hands-on assistance, and is for individuals who are unable to live alone and do not warrant skilled nursing care. Board and care homes provide a more homelike atmosphere for residents to age in place.
They provide assistance with personal hygiene, grooming and bedside care during periods of minor or temporary illness. They may also provide some recreational and social activities.
Again, due to the ever-changing landscape of facilities and services as well as terms and terminology, many facilities definitions overlap such as boarding care.
Facility/Institutional Care: Residential Care Facilities (RCF)/Assisted Living Facilities (ALF)
This differs from congregate/Independent living communities in a 24-hour supervision and assistance are provided for residents with minor medical problems or who need assistance with such things as bathing, grooming, dressing and meals.
Most of these communities offer private, semi-private, or efficiency apartments with or without kitchenettes. They typically provide common living areas, card/games/room, library, TV lounge, social activities, and central dining room, housekeeping, and linens (towels and sheets), from one to three meals, and transportation.
Since these communities are licensed by State Department of Social Services, Community Care Licensing Division as Residential Care Facility for the Elderly they can also supervise and distribute medications to residents.
Assisted living/personal care has several different customized terms that are used in the marketplace such as; Catered Living, Catered Care, Helping Hands and Independent Plus to name a few.
When looking into this form of living arrangement, one must find out what services are included in the base fee, versus those that offer additional service based on the level of care needed. Assisted living/personal care is either included with the monthly care fee or the residents are charged according to the level of services used. If these charges can be based on an hourly rate for different types of services, “a la carte”, or charged according to the level of care provided.
Any facility that is marketing itself as an assisted living, personal care retirement home, or residential care facility, must be licensed by the State Department of Social Services in order to provide the levels of care and service.
Facility/Institutional Care: Intermediate Care Facilities (ICF)
This type of facility accepts individuals were relatively independent but who may need assistance with bathing, dressing, getting out of bed, etc.
ICFs provide some nursing care but do not offer continual nursing services supervision.
ICFs are not licensed to accept incontinent or non-ambulatory patients because they provide a lower level of skilled nursing services that are required by such patients.
ICFs are usually lower in costs than skilled nursing facilities.
Facility/Institutional Care: Skilled Nursing Facilities (SNF)
Skilled nursing facilities (SNF) are also referred to as nursing homes, and convalescent hospitals, SNFs provide 24-hour nursing services under the supervision of a registered nurse or if fewer than 59 beds, a licensed vocational nurse.
Basic skilled, intermediate and custodial care, i.e.: “activities of daily living” (bathing, dressing, eating, and toileting) or usual care services.
A growing number of skilled nursing facilities are specializing in special care needs and offer sub-acute services previously reserved for acute hospitals.
Services provided in addition to basic skilled services may include one or more of the following: specialized rehabilitation programs, respiratory therapy services, ventilator care, tracheotomy care, IV services for hydration/pain management, hospice services, respite care services, Alzheimer’s and dementia units.
Residents with special needs are best served when placed in centers with programs designed to meet their needs.
Alzheimer’s: skilled nursing facility specialization in this area fit all the basic skilled nursing facility criteria with emphasis in provisions in the special care aspects of security for wandering. Specialized activity programs and facilities geared to meet higher activity/agitation levels of the Alzheimer resident.
Costs of Care
The Genworth Cost of Care Survey has been the foundation for long term care planning since 2004. Knowing the costs of different types of care – whether the care is provided at home or in a facility – can help your client plan for these expenses.
The 2016 survey, covers 440 regions across the U.S. and is based on data collected from more than 15,000 completed surveys. Click here to examine the costs in your area.
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