Many families struggle with the tough decision on where someone with dementia behaviors should live. Often assisted living looks less like a nursing home and can be inviting. But what if the assistance in assisted living is not enough? Does this lack of oversight cause undue hardships for seniors with dementia?
Those who have loved ones suffering from dementia know that each day can be a struggle. The health and wellness of said loved one is a source of constant anxiety, since dementia's well-known symptoms of memory loss, aggravated mood, and confusion can lead to physically dangerous consequences if not closely monitored.
When a person with dementia is placed into a care facility, the hope is that this person will be kept safe and that the person's health will be maintained or even improved with professional care. Many dementia patients end up in assisted living facilities for at least some of their lives, since they may need observation but not the close kind of medical monitoring typically offered in nursing homes. Dementia patients in assisted living facilities are common; more than half of such facilities with 50 or more units have a dementia care program or a unit devoted to dementia care.
The difference between the two major types of long-term care facilities-nursing homes and assisted living residences-may be cause for concern. Assisted living facilities are not monitored as closely as nursing homes. Regulations are limited, inspections can be infrequent, and dementia patients are particularly helpless when it comes to reporting mistreatment.
Does the lack of oversight create even more hardships for dementia patients?
Assisted living facilities are regulated in various ways, depending on the state in which they are located. This variation can cause some confusion among caregivers--"In my home state, this is the standard, so how can they do this here?" It can also make finding a good long-term care facility complicated. Forty states do require at least some training for direct care workers, but the hours required vary considerably. Some states allow only registered nurses to distribute and administer medications; others allow nurses to hand that responsibility off to unlicensed staff persons.
Horror stories abound, especially on the Internet, about particularly awful facilities. In spite of many dedicated care workers and excellent facilities, the truth is that assisted living residents have been neglected and abused in every state in the country. It took years for Alabama to close a rogue facility, even after the facility lost a lawsuit that said the signs of a stroke were ignored by its professional caregivers. Other facilities are not kept clean, hire violent workers, or allow patients to harass each other.
Dementia patients are especially vulnerable to this kind of neglect or abuse since they can have symptoms that affect their memory, speech, and balance. Reporting abuse and neglect experienced by a dementia patient is, therefore, tricky on a legal basis, and requires family members to be vigilant.
Every state has a formal process for reviewing complaints against long-term care facilities. Depending on where you live, this may consist of a large department or a subset of the Department of Health or some other bureaucratic agency. Seeking out this agency and determining the process to lodge complaints, what kinds of complaints have already been lodged against a specific facility, and what legally constitutes neglect or abuse is vital to keeping your loved one safe and monitoring their health.
In spite of the state reporting or complaint review system, the answer is "Yes" to the question of whether the lack of oversight can be injurious to dementia patients. Stricter regulations, legally speaking, result in better health outcomes for patients, since guidelines and frequent oversight require facilities to have better training, better facility maintenance, and better overall care. Further, one study found that abuse may not be entirely physical; they cited "humiliating remarks" as an area that could use significant improvement.
This does not mean, however, that no one is to be trusted. Instances of abuse and neglect are not common, although anecdotal evidence may suggest that alarm or anxiety are in order. It is also worth noting that the presence of more licensed caregivers, such as nurses and doctors, could have something to do with better patient care, so searching for facilities with more licensed staff is advisable.
Pushing for more guidelines and monitoring in assisted living facilities is a long term project. Some think that more regulation is not the issue; inspections to check that facilities are abiding by regulations is. Either way, more checks to ensure the safety of dementia patients will only improve patient outcomes and care.
Ultimately, you cannot guarantee the safety of someone you do not personally monitor 24 hours a day. You can, though, be a vigilant and observant caregiver even when you do not see your elderly loved one. Learning the regulations that are in place, finding whom to contact should you become suspicious of mistreatment, and contacting your loved one and their caregivers frequently to check in will all benefit dementia patients in assisted living facilities.
Carder, P., O'Keeffe, E., O'Keeffe, C. (2015). Compendium of Residential Care and Assisted Living Regulations and Policy: 2015 Edition. Research Triangle Institute. Available at https://aspe.hhs.gov/basic-report/compendium-residential-care-and-assisted-living-regulations-and-policy-2015-edition#overview.
Castle, Nicholas. (2013). An Examination of Resident Abuse in Assisted Living Facilities." Research report for the National Institute of Justice, Office of Justice Programs, U.S. Department of Justice, unpublished. Available at https://www.ncjrs.gov/pdffiles1/nij/grants/241611.pdf. Retrieved 02/01/2016.
Yurkanin, Amy. (January 24, 2016). Dementia homes exist in gray area of regulation, families say. Al.com. Alabama. Available at http://www.al.com/news/index.ssf/2016/01/dementia_homes_exist_in_gray_a.html