This post is probably of interest to newcomers to our group or those facing new declines who need to know their options for care.
A recent CurePSP (psp.org) magazine article describes types of care, including:
* adult day programs
* rehabilitation, including in-home therapy
* in-home care
* long-term care facilities
* vial of life
Although this article on types of care was published a magazine for those dealing with progressive supranuclear palsy (PSP), the list of care options is not PSP-specific.
Types of Care
Diane B. Breslow, MSW, LCSW, Northwestern Medicine Parkinson’s Disease and Movement Disorders Center
What follows is an overview of the spectrum of care for adults with physical impairments or chronic disease. Although not PSP-specific, all of the levels discussed are potentially appropriate for people with PSP. That said, it is most important and acceptable for family caregivers to inquire as to a staff’s experience with PSP. Family members can and should make providers aware of the symptoms and needs of PSP patients, and offer to ascertain PSP educational materials, speakers, and in-service training for staffs.
ADULT DAY PROGRAMS
Older-adult day programs (also referred to as adult day care centers) are community-based, day-long social and recreational programs provided in a safe, secure group setting. Participants typically exhibit cognitive, social, and/or functional limitations, and therefore require the supervision and structure that adult day programs provide. Most programs also offer some health-related services, such as medication reminders. Other features of adult day programs include transportation, exercise, social work services, lunch/snack, socialization and peer support, on-site/on-call nurses, and assistance with or supervision of eating, walking, and toileting. In addition to the benefits to participants, adult day programs afford family caregivers a respite from the demands of full-time caregiving for someone who needs constant supervision. Services and fees for adult day vary from program to program, and state-to-state.
Even with a degenerative disorder such as PSP, rehabilitation therapies can offer helpful safety instructions and can help to re-stabilize an individual’s functioning. The skilled rehabilitation therapies of physical therapy, occupational therapy, and speech therapy are provided in multiple different settings: day treatment centers, one’s home, in-patient units of rehabilitation institutions, and out-patient centers. Skilled therapy is an order prescribed by a physician; in the case of PSP, either the movement disorders neurologist or physiatrist (rehabilitation physician) would write the order. Therapy is covered by Medicare and other health insurance companies, so long as the person is not already receiving insurance-covered therapies in more than one setting at the same time.
In-patient rehabilitation – large, dedicated rehabilitation institutions offer in-patient rehab stays as well as all other levels of rehab treatment. To qualify for an in-patient rehab unit, one must meet specific criteria related to the ability to participate in and benefit from daily, intensive, multiple therapy sessions.
Day rehabilitation programs – In addition to offering in-patient and out-patient rehabilitation, some rehabilitation institutions also offer Day Rehabilitation: a concentrated, rather intense, community-based, day-long treatment program that encompasses all of the skilled rehabilitation therapies: occupational therapy, physical therapy, and speech therapy. To qualify, a patient must be able to undertake 3 hours of therapies each day.
Out-patient therapy this is provided in a community clinic setting. Therefore, the patient must be able to leave the home for therapy. Unlike day rehabilitation, out-patient therapy implies that one is receiving one-hour sessions of physical, speech, or occupational therapy.
In-home therapy this refers to physician-ordered, skilled, rehabilitation therapy — speech, physical, or occupational — for patients who are home-bound and unable to travel to an out-patient therapy setting. A registered nurse usually oversees the home rehabilitation care. During the time that a case is open for home rehab, the patient is also eligible to receive a bath aide. However, once the course of rehabilitation ends, so too does the bath service.
In-home care refers to personal care with activities of daily living, such as bathing, grooming, and dressing. In-home care providers are also called companions, personal aides, or personal caregivers. They work either for themselves privately, or for an agency that takes responsibility for setting fees, making caregiving assignments, insuring and bonding the caregivers, and training them. In-home caregivers can be employed by task, e.g. bathing assistance, or by blocks of time, e.g. 4 hours or 8 hours or even live-in. For the most part, personal care is a private expense. Medicare or health insurance does not cover it; however, it may be covered by one’s long-term care insurance policy. Most states, through their local area agencies on aging, offer a capped number of hours of companion services to older adults.
LONG-TERM CARE FACILITIES
Long-term care facilities are listed on a spectrum from most to least independent.
Independent living is a broad term that encompasses senior apartments, active communities, and retirement homes. These types of buildings are not licensed to provide personal care or nursing services, although residents can and do contract for private duty care just as they would in their own home or apartment (See in-home care section). All of these more independent facilities offer amenities such as 24-hour security, transportation, and activity programs. Whereas senior apartments and active communities may not serve meals in a central dining room, retirement homes usually do have group dining.
Assisted living refers to an entire building, or a specified part of a building, that is licensed to provide personal care 24 hours/day. Caregivers are trained, certified aides who assist with daily tasks such as bathing, dressing, escort to meals, medication set-up and dispensing, and routine checks on residents. A registered nurse sets up and stores a person’s medications, and an aide can deliver the medicines to the resident. Assisted living also provides housekeeping and social programs, as well as transportation to and from medical appointments, errands, and group outings. Some facilities may offer rehabilitation therapies, hospice care, and specialized care for different disorders.
Continuing Care Retirement Communities (CCRCs) are residential, gate-secured campuses that, with a substantial entrance fee, guarantee lifelong care beginning with independent living (cottages or apartments) and progressing on to assisted living and then skilled (nursing home) care.
Nursing homes are institutions that are licensed and regulated by state and federal governments to provide skilled care twenty-four hours a day. Registered nurses are on-duty around the clock, as are certified nurses’ aides. Physicians serve as medical directors of skilled care facilities. Everything from activities to nutrition, personal care, environmental safety, staff-to-resident ratios, etc. must meet state and federal guidelines. Within a nursing home facility, there are also levels of care. Some residents require only “custodial care,” or personal care with their activities of daily living such as bathing, dressing, or toileting. Other residents require the services of a nurse for the skilled care of wounds, intravenous medications or feedings, or managing of machinery such as respirator or ventilator. Medicare and supplemental insurance policies cover 100 days of nursing home care that results from a hospitalization and meets the criteria for rehabilitation therapies. After the rehab portion of the stay, residents pay privately and/or by means of their long-term care insurance.
Palliative or hospice care is compassionate, supportive, interdisciplinary end-of-life care for patient and family. Such care can occur in one’s home, in a long-term care facility (nursing home), in an in-patient hospital unit, or in a free-standing dedicated hospice building. In order to receive hospice care, one must have a physician’s order, followed by an evaluation by the hospice nurse or doctor. Hospice care is covered by Medicare.
VIAL OF LIFE
No matter where your loved ones live or participate in programs such as those described here, they should always keep with them, or in a specified location in their living space, a “Vial of Life.” This paper, which some people roll up and keep in a bottle in their refrigerator hence “Vial of Life” should contain the following information:
• Date updated
• Name, address, phone number
• Medications/dosages/frequency or times
• Drug allergies
• Medical conditions
• Surgeries (including year)
• Blood type
• Power of attorney for healthcare
• Two emergency contacts
Because information can change, you should regularly review and update the Vial of Life.