Deciding upon an alternative living placement is not easy. Families of individuals with a diagnosis of Alzheimer's disease and/or a related dementia have a particularly difficult task because the diagnosed individual usually cannot participate in the decision. This leaves it up to the caregivers to decide when and where to move the person.
Sometimes circumstances leave the caregivers little choice (a sudden hospitalization and few openings at local homes), but for most people coping with Alzheimer's disease on a day-to-day basis, there is often time to plan for long-term care. It is in the person with dementia and the family's best interest to plan ahead.
Only you can decide what is best for the person with dementia. As you consider the decision, keep in mind some factors that can help you determine if placement is appropriate. If any or all of the following conditions are present, this can be a strong indication that alternative living would be in the best interest of all concerned.
The person with dementia:
There is a wide variety of residential facilities available in New York City and the surrounding metropolitan area. Some have specialized units for people with dementia or Alzheimer's disease, and others take Alzheimer's persons but don't have special Alzheimer's programs.
Assisted Living provides a special combination of residential housing, personalized supportive services and healthcare. It maximizes independence, but do not provide skilled nursing care. It is designed to meet the individual needs of those requiring help with activities of daily living, but who do not need the skilled medical care provided in a nursing home.
Nursing Homes, or Skilled Nursing Facilities, are designed for persons who are in need of 24-hour nursing care. Nursing Facilities provide many of the same residential components of other senior care options, including room and board, personal care, protection supervision, and may offer other types of therapy. Their onsite medical staff sets them apart from other types of senior housing. Nursing care is provided by registered nurses (RN), licensed practical nurses (LPN), and nurses aides at all hours of the day.
Nursing homes usually distinguish between skilled care and custodial (or intermediate) care. Short-term skilled care is usually covered under Medicare and other types of insurance. Examples of skilled care are; physical therapy after a joint replacement or a stroke, nursing services such as IV therapy, dressing changes for a stage 3 wound or new tube feedings. Custodial care encompasses much of the care provided in nursing homes. It is usually not covered by insurance, except for Medicaid. It typically includes assistance with most activities of daily living such as assistance with eating, dressing, bathing, medication management, and walking. A large number of people with Alzheimer's disease or a related dementia will require custodial care.
Small Group Homes are either actual homes that have been converted to handle persons with dementia, or facilities that are built on a small scale for a limited number of residents. There are a number of small group homes in the metropolitan area with a population of people with Alzheimer's.
The cost for long-term care varies widely depending on the type of facility in which you place the person with dementia, and the insurance that you have available. Most of the cost of care is paid privately.
Costs Covered by Insurance
Medicare covers short-term skilled care up to 100 days. Only the first 20 days are covered at 100% and from day 21 to day 100 the patient's co-payment is $105 per day (2003). To meet the criteria for Medicare the patient must have a three-day hospitalization and be in need of skilled care. Admission must be within 30 days of hospitalization and the patient must be in need of services for which he/she was treated in the hospital. For more information about Medicare, click here.
Medicaid is a state/federal program that does pay the cost of nursing home care for eligible individuals. The patient must meet income and resource requirements, although for spousal couples there are provisions under the law to provide some protection for the well spouse. The Medicaid programs are administered on a local level and applications are made through the county social services departments. Often patients will enter nursing homes as a private pay patient, but once their resources are "spent down" they may apply for Medicaid. Homes often ask detailed financial questions on the admissions application to ascertain how long the patient can pay privately before needing to apply for Medicaid.
Long-term care insurance and a very few health insurance policies will pay for nursing home care. Families need to check carefully any plans they have as to the requirements to make use of the benefits offered.
A location convenient to the family is an important consideration. When the facility is convenient to family and friends it becomes easier to visit and there is more opportunity to monitor the care being provided. However, sometimes due to availability or financial reasons it is not possible to find a facility close to the family. Whether a facility is convenient or not, it is important to form relationships with the staff so that everyone can work together to provide the best care for the patient.
There are many things to consider when deciding where to place a person. Your first impressions will probably be the look and feel of the facility. Is it clean and odor free? Are the rooms attractive and pleasant? Is the furniture comfortable and in good repair? As important as these things are, it is more important to look beyond the physical characteristics of the location to try to determine the level of care provided to residents. Look for signs of respect, dignity, and compassion. See if residents are treated as adults. Are they up, dressed and well groomed, or are they physically restrained and look unduly medicated?
If possible, look at several facilities before making a decision.
What services does the facility have for the special needs of someone with Alzheimer's?
Some homes have designated Alzheimer's or dementia units to meet the special needs of those with cognitive impairment. Currently most homes self-define their dementia unit and what is included can vary considerably from home to home.
It is essential to visit all homes under consideration in order to make an informed choice. Most initial visits are spent with the admissions or sales personnel and include a tour of the facility. This can be very helpful in gaining an overview of the facility. However, in order to get to know the facility better, it is highly recommended that you speak with the coordinator of the Alzheimer's program, (if they have one) and spend time in the actual unit where the people with Alzheimer's live. Ask the staff who works with the Alzheimer's patients these questions about their program and services.
Try to spend at least an hour and a half in the Alzheimer's unit so you can observe how staff interacts with residents, what happens at mealtime, and whether the residents seem engaged in activities. You want to get a sense if the program is meaningful, if the residents are enjoying it or if they seem uninterested or are sleeping through it. Ask yourself if the residents are comfortable, and also note whether you feel comfortable. If after observing the unit for an hour, the answers to the above questions are yes, then the facility is doing something special.
It is also very helpful to speak with the family members of patients who are in the facility; particularly patients who are at a similar level to the person you are placing. Other family members will have an insight into the workings of the facility that you will only be able to get from them. Also ask if the facility sponsors groups for the families of residents.
Caregivers know the person and their particular needs best. Look closely at the residents to see if there is anyone at the facility who reminds you of the patient. Describe the patient to staff, and ask if they think that the patient will fit in with other residents and benefit from the program.
Sometimes the facility does NOT have dedicated staff for people with Alzheimer's. This does not necessarily mean that you should not consider the facility, as the facility may meet the needs of the person with dementia and family in other ways. However, even if they do not have staff dedicated to Alzheimer's person, ask to speak with the people who actually work with the patients, like the Recreation Director. Ask what activities they have and how people with Alzheimer's can and do participate.
The more you observe at the facility, the easier it will be to make a decision about whether it is the right one for your family. You may want to visit more than once, at different times, to observe the routine of the home. No matter how often you visit, try to get a sense if staff knows what they are doing and look to see if the residents seem well cared for, and are actively and positively engaged. This is the essence of good care.
Consider Long-Term needs
As the disease progresses, will the facility be able to accommodate the needs of the resident? Will this setting still work in 6 months or a year? At what point will a change be necessary? Does the facility have a relationship with other facilities that provide care for patients in the later stages of the disease? If so what are the names of those facilities?
It is very important to review admission and discharge criteria. Under what conditions might a resident be asked to move (change in behavior, change in financial circumstances?) Even though most placements work out, be aware that some do not.
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Source: "Choosing a Care Facility", Alzheimer's Association of Orange County.