Family care partners often ask me, “How will I know when it is time for placement?” It depends, and there is no magic formula. Factors that affect the timing and the decision include care partner support, the relationship between care partner and the person living with dementia, and financial resources. The take-away message is that placement is not failure.
Care Partner Support
In an ideal world, there are other friends or family members who can assist with care. This is not always the case. If the care partner has minimal or no help, placement may be an option that is considered earlier in the disease. As I mentioned in a previous post, sometimes the care partner has more physical problems than the person living with dementia. The care partner can no longer provide safe or sane care.
In the Birmingham Alabama area, we are blessed with multiple faith-based respite programs. These programs are usually 4 hours a day, two to four days a week. The programs are built on a volunteer model, meaning that everyone is identified as a volunteer. Every person living with dementia has a buddy. The focus is on what people can do, not what they cannot do. Socialization is a big factor for these programs.
There are also adult daycare programs that operate for 8 or more hours daily. For care partners who work full-time, these daycare programs fill an important need. The cost for these programs often start at $40/day. Some adult day care programs are free-standing. Others are part of a long-term care facility.
In-home care is another option, but it is pricier. There are 2 types of in-home care: home health care and sitter/companion services. Home health care must be prescribed by a clinician (physician, nurse practitioner) AND there must be some type of specific health need: physical therapy and wound care are 2 examples. Home health may be tied to a recent discharge from the hospital. In addition to these services, a nursing assistant may also be sent out to assist with bathing and other care needs. Home health care is usually covered by insurance but has limits, often 12 weeks at a time.
Sitter/companion services require no prescription. These individuals are not licensed. Some may be nursing assistants. Others may have only received training from the agency. These services include light housekeeping, meal preparation, and supervision. Some home health agencies offer sitter services.
The relationship between the person living with dementia and the care partner also influences placement decisions. We all have our personalities. Some people get along well with almost everybody. Some people do not. If there was conflict and difficulty before the arrival of dementia, there will likely be continued conflict and difficulty. I hear from many people who are caring for someone out of duty. This is very challenging, and may not always be a good idea.
When I was raising 3 children, I recall looking at some parents and seeing a mismatch between parents’ personalities and that of their children. These mismatches created conflict and stress for everyone involved. The same dynamic can happen in dementia caregiving. For example, the person living with dementia may be high-energy and very extroverted. He or she wants to be in the middle of any and all activities. The care partner, on the other hand, is more introverted and reserved. He or she hates large crowds and busy social events. The care partner may be utterly exhausted trying to take the person living with dementia to these events. Not only are the events draining; the added responsibility of making sure that the person living with dementia is not getting lost or is behaving “appropriately” places even more strain on the care partner. The result is a constant tension between both persons’ preferences. In this case, placement in a busy assisted living community may be the best option for all involved.
There is a myth around dementia caregiving. The myth is that love is enough to figure out the challenges around caregiving. Wrong. Think about this: everyone can sing, but not everyone is a singer. Everyone can care, but not everyone is a caregiver. Caregiving is a skill that can be learned. This is one of the reasons I give live boot camp sessions and provide webinars. I also recognize that even with education and training, some people living with dementia provide more challenges than others.
Placement may be the kindest and safest option for all involved.
Facilities cost money. Period. Financial resources do affect placement decisions.
The first decision is assisted living or nursing home. So many family care partners get hung up on the wording. I hear constantly, “Mom is in an assisted living. We would never put her in a nursing home.” Ironically, these maligned nursing homes are less likely to over-medicate compared to the assisted living facilities. Nursing homes are inspected and monitored by the Centers for Medicare and Medicaid Services. These facilities receive annual surveys, also known as inspections. Assisted living facilities are governed by state regulations, which vary from state to state. The Department of Health usually oversees the running of assisted living facilities.
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Another aspect is the timing of the transition. Sometimes, it is better to transition earlier in the disease. The person living with dementia may be able to adjust to the relocation. But there is also the concern that the person may outlive his or her resources.
Nursing homes often accept Medicaid, so if the money runs out, your loved one can remain there. Assisted living facilities may or may not, depending on the state regulations. In Alabama, assisted living facilities are not eligible to receive Medicaid, so all assisted living facilities are private pay. People without resources may be better off going the nursing home route.
Depending on your financial picture, you may want to select a continuing care retirement community, or CCRC. These CCRCs often have levels of care starting with independent living and progressing to nursing home care. The individual is guaranteed care for life. He or she can be moved to the different levels, depending on the need for care. Many CCRCs also have short-term rehabilitation units. If the person living with dementia develops pneumonia and requires hospital care, he or she can return to the rehabilitation unit until he or she becomes strong enough to return to the original floor. Or, if his or her health declines, she can be moved to higher levels of care.
Placement does not equal failure. Placement may be the kindest option for all.
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.