Many care options are available to a family providing care for a person who has been diagnosed with Alzheimer’s. These include such services, programs, and facilities as:
Private In-Home Care
In-home care workers can be hired privately or through a home health agency. There are many advantages to hiring home health aides or companions through an agency:
- If Medicare, Medicaid, or another third-party insurance will be billed, the services must be provided through a licensed home health agency. This license or certification is an indicator that an agency has met minimal standards set by the federal government.
- Agencies make life for the patient’s family easier. The agency is able to identify and hire workers, monitoring their work. The staffing process includes a responsibility for obtaining the needed clearances and background checks, lessening risk.
- If an agency offers a full range of services, the care tends to be coordinated and more comprehensive.
- Agencies have insurance in the event an accident occurs, or a worker is injured while on the job.
- The agency handles all the paperwork involving social security and income tax withholding.
- The agency provides coverage to replace a worker if someone calls off sick, needs a vacation or personal day, or does not report for work.
There are many things to consider when hiring private caregivers:
- Someone will need to obtain references and monitor the work closely. Many private caregivers are first rate and provide excellent care; however, be sure that the workers being hired are trustworthy. Criminal background checks can be obtained through the state police.
- Consider the exposure to potential liability. Who is responsible for costs if the worker is injured on the job, or is at fault to an injury or accident involving the patient?
- A schedule will need to be completed and a contingency plan agreed to by all workers. What if someone needs a day off, calls off sick, or just does not report for work?
- Who is responsible for the tax withholding? Generally, if the people hired to work are in the patient’s home and directed by the patient (or the patient’s family member/caregiver) about the workers’ duties and work hours, the workers are employees and not independent contractors. The family member/caregiver should talk with the patient’s accountant regarding the income tax issues.
Medicare Funded Home Health Services
It is a common misconception that Medicare-funded home health services will meet all of the care needs for a person living with Alzheimer’s. The circumstances under which a person would qualify for Medicare coverage of home health care are very limited. To qualify, a person would need to be 1) homebound (have a medical condition which makes it difficult to obtain services outside of the home); 2) in need of skilled nursing or rehabilitation services, rather than simply requiring personal care; and 3) approved to receive these services by the attending physician.
Medicare does not cover a nursing assistant to stay with the person all day while the caregiver goes out or to work. Aide services are usually for only a short period of time (maximum of two hours) and for only one to three days per week. Home health aides and social workers may be covered if their services are an integral part of the skilled care package; however, once the skilled need has ended, the aide and social worker services would also be terminated.
Living Together in One Home
If living alone is not feasible, an alternative plan is for the person with Alzheimer’s disease and the caregiver to share living arrangements. Living under one roof with a person who has Alzheimer’s disease will greatly impact the lifestyle of the entire household. The needs of the person who is diagnosed with Alzheimer’s, as well as the needs of the caregiver (and family) should be carefully evaluated. Some things to consider are:
- Is there a private and safe place for the person who is living with Alzheimer’s?
- Will every member of the household have adequate privacy?
- Is there enough time and attention to devote to the person who has Alzheimer’s disease?
- Caregivers and their families should be educated about Alzheimer’s disease and the special needs of the patient.
Medical Alert Monitoring Services
These are systems offered by various providers that can be used to summon help in an emergency. Typically, the person in distress presses a button on a necklace, wristband, or a wall mount, which signals to a central call center. Some devices allow voice communication. The call center will contact a list of responsible people that the patient has provided, or it can summons 911 for emergency services. These systems can be installed (or ordered online for self-setup) and charge a monthly monitoring fee. Some systems offer fall detection, can be GPS enabled, and can apply to landline or mobile devices. A helpful comparison of monitoring systems can be found at Consumer Reports.
Adult Day Care Centers
Adult day care can provide needed respite for caregivers. It can provide an option for keeping an individual who is living with Alzheimer’s at home by providing day-based services in a community-based facility. Most adult day cares offer basic care, as well as social and recreational opportunities, with staff to assist and supervise participants. A few adult day care programs offer much more comprehensive care, including transportation to and from the facility, medical monitoring by a staff physician, and social service staff to address the psycho- social needs of the participant. There are more than 4,800 adult day care centers serving over 282,000 people. Ownership of adult day care facilities may be for profit or not for profit. In 2014, 44.2% of these were established for profit. Care is typically provided Monday through Friday from 8:00 a.m. to 5:00 p.m. During non-program hours, the participant resides in a family home with their caregiver. Adult day care facilities frequently provide care for patients with Alzheimer’s disease and related dementias. The average cost for adult day care varies greatly from state to state, and even within states. This cost may be covered by the Medicaid program in some states.
Assistance in Living Facilities
Assistance in living facilities (commonly referred to as assisted living or as personal care homes) are ideal for a resident with Alzheimer’s who requires some assistance with the activities of daily living (bathing, toileting, dressing, transferring, and eating), but not constant supervision due to more acute medical needs. Residents are encouraged to be as active and as independent as possible. Assisted living facilities offer three meals per day, recreation and socialization, transportation, assistance with the activities of daily living and medication, and laundry/housekeeping. Some facilities offer private rooms and residents can often bring their own furniture and personal belongings to create a more homelike environment.
Assisted living facilities have been progressively changing. They offer a greater range of care than in the past. Many facilities offer additional care options to those living with Alzheimer’s disease and other cognitive impairments. There are facilities that even have units dedicated to providing more specialized care.
Payment for care in an assisted living facility is almost exclusively private pay. The cost of care can range from $3,000 to $4,000 per month. The Veterans Administration can provide some assistance to eligible veterans and their spouses. The Supplemental Security Income (SSI) program may provide financial assistance for patients residing in facilities that will accept this type of payment. When looking at assisted living facilities, be sure to ask the admissions director what will happen to the patient when and if his or her funds are exhausted; be aware if the facility could potentially discharge the patient because they can no longer pay their way.
Continuing Care Retirement Communities
Continuing care retirement communities (CCRCs) are also sometimes known as “life care centers.” They offer it all from independent living to skilled nursing facility care, but often at a rather hefty price. Once a resident is admitted, the appropriate level of care needed is provided for the duration of his or her life. These communities typically contain houses or apartments for those who are still relatively independent. Additionally, assisted living level of care is available when more care is needed, and, finally, skilled nursing facilities are available when an individual needs assistance with activities of daily living and increased medical care. Residents can move within the CCRC as care needs change. This helps keep a family together. If one spouse needs nursing home care, but the other remains independent, or needs only an assisted living level of care, both can continue to reside on the same campus.
While CCRCs are generally quite costly, they offer enormous peace of mind. Entrance fees vary greatly from tens of thousands of dollars to hundreds of thousands of dollars, depending upon the type of contract that is signed. (Sometimes, the entrance fees are refundable. Again, this would depend on the contract signed.) There are usually monthly maintenance fees as well.
Every person diagnosed with Alzheimer’s will experience symptoms at different times and work through the stages of the disease at various rates; therefore, it is impossible to predict when and if the person with Alzheimer’s will need care in a skilled nursing facility. It is quite likely that a time will come when care can no longer be provided in the community. Planning for an admission to a skilled nursing facility should begin well in advance of the need for nursing home care. This advance planning allows the family to be well informed of what facilities are available, what services are provided, and what the care will cost.
Hospice is the philosophy and practice of caring for the dying. It is based on the belief that death is a natural and inevitable part of life and that at some point all efforts should be focused on enhancing whatever life remains. Hospice can assist a patient with Alzheimer’s disease by attempting to keep the patient comfortable and free from pain the last days of life. Hospice care can be utilized wherever a person is living when the referral is made by their physician… in their community home, in assisted living, a skilled nursing facility, or in a hospital acute care setting.
Hospice involves a team of professionals, working together with the patient and their family, to make the end-of-life experience as meaningful for the patient as possible. The hospice team is comprised of doctors, nurses, social workers, therapists, dietitians, clergy, home health aides, and volunteers. Staff members are available 24 hours a day, 7 days a week to meet the needs of the person living with Alzheimer’s and his or her family, to answer questions, and to make visits as needed.
As important as the physical end-of-life care is, the psychological care Hospice can provide to the patient and family of a person living with Alzheimer’s disease is immense. Nurses, aides, social workers, and clergy discuss the dying process and other emotional issues and offer bereavement counseling.
Almost all Hospice services are covered by Medicare. To qualify, the person with Alzheimer’s must elect the Hospice benefit. If at any point the patient decides to return to the original Medicare benefit, he or she can do so by signing a statement of revocation.
Call us at 919-443-3035. One of our friendly Client Welcome Specialists will be happy to tell you more about The Alzheimer’s Planning Center and our unique Memory Safeguard Planning, to help you determine the best path forward, and to help you take the next steps toward a more secure future and a better life.
 Consumer Reports, What to Look for in a Medical Alert System, available at https://www.consumerreports.org/cro/2014/06/what-to-look-for-in-a-medical-alert-system/index.htm (Last visited March 1, 2018)
 Centers for Disease Control and Prevention, 2014 National Center for Health Statistics, Adult Day Service Centers, (last visited Sept. 11, 2017)
 Medicare.gov, Nursing Home Compare, available at https://www.medicare.gov/nursinghomecompare/search.html (last visited Jan. 23, 2018).
Alzheimer's Planning Series
Long-Term Care Planning Series
This article series explores how a well-rounded long-term care plan can help protect and preserve your independence and dignity while avoiding financial devastation and unnecessary stress to your family. This article series explores long-term care planning options ?beyond government assistance planning such as planning for eligibility for Medicaid or Veteran's Benefits.