New Recommendations Set the Standard for Dementia Care
New Recommendations Set the Standard for Dementia Care, But Not All Facilities Comply
By Steven M. Levin
Alzheimer’s disease and other dementia conditions impact about 5.5 million Americans, according to the Alzheimer’s Association, and 220,000 of those people live in Illinois. Because the progression of dementia is unpredictable, individuals suffering from the symptoms, along with their caregivers, must constantly assess and re-assess what kind of care they need and where and how to get it. At some point in the difficult journey through dementia, this can mean receiving care in a long-term care facility, such as a nursing home or assisted living center or dementia care homes.
Placing a loved one in a long-term care facility is a heartbreaking decision, and unfortunately it’s one that sometimes must be made quickly as symptoms take a turn for the worse and a patient can no longer be cared for safely at home. While caregivers will certainly experience a temporary sigh of relief when the patient is safely settled in his or her new home, new worries may quickly supplant that sense of calm. How can you know whether your loved one with dementia is receiving the best possible care?
The Alzheimer’s Association, the nation’s leading advocacy organization for dementia, recently released a new set of 56 practice recommendations for professional care providers. These guidelines, based on a comprehensive review of current evidence, best practice, and expert opinion, are organized around a single fact born out in empirical data about dementia: “Person-centered practice is the core of quality care.”
Person-centered care treats the individual living with dementia as more than just a diagnosis. That means care providers are actually supposed to know the unique individual they are caring for, and that interactions with the patient are informed by respect for the individual’s values, beliefs, and abilities, past and present. Care providers use effective and empathic communication, and build and nurture authentic, caring relationships that treat everyone with dignity and respect. They create a supportive community for individuals, family, and staff that provides opportunities for engagement, autonomy, joy, comfort, and meaning, even in the midst of the losses that accompany dementia.
The new practice recommendations from the Alzheimer’s Association go on to describe many other markers of excellent care across 10 categories, including Detection and Diagnosis; Assessment and Care Planning; Medical Management; Information, Education, and Support; Ongoing Care; Staffing; Therapeutic Environment and Safety; and Transitions and Coordination of Services. The bigger picture that emerges from these guidelines is that high-quality care can only happen in well-staffed facilities where care providers are highly trained in the most up-to-date research, and all decisions at the management level are made with the best interests of the residents in mind.
Unfortunately, many facilities fall short of meeting these recommendations. According to the Kaiser Family Foundation, an independent policy analysis organization, nearly 40 percent of Illinois nursing homes received low ratings—1 or 2 out of 5—in the federal government’s quality rating system. Facilities received low scores by failing to live up to a number of measures, including adequate staffing, state health inspections, and adequate basic care like infection control and pain management. For-profit institutions, which account for 70 percent of all facilities in the U.S., were more likely than nonprofits to score low on the federal rating system. With so many facilities already failing to meet these minimum requirements, it’s hard to imagine they are embracing the more complex and resource-intensive recommendations issued by the Alzheimer’s Association for the care of people with dementia. It might be a good idea for care homes that provide better provisions for Alzheimer’s they should use a care home owners new marketing tool to improve the visibility of these services that are providing the right services.
Poor care can result in hospitalization or death. All too often, families see their loved ones suffering in circumstances that were foreseeable and avoidable. Certain risks, such as falls, are inherent in the dementia diagnosis, yet long-term care providers are not always adequately prepared to prevent them. All too often, caregivers are poorly trained, overworked and underpaid. They are simply not able to offer the level of care outlined in the Alzheimer’s Association guidelines. And the facilities that employ them—those homes and centers we trust with the care of our loved ones—are all too quick to blame individual caregivers or even the patients themselves when things go wrong.
Failures to keep dementia patients safe are systemic failures. They represent a breach of the trust placed by families in the long-term care facilities housing their loved ones.
The good news is that residents do have rights protected by law, including the rights to get information, participate in their care, make choices, voice complaints, and be treated with dignity and respect.
Families can review the Alzheimer’s Association recommendations online at https://alz.org/dementia-care-practice-recommendations/ Families can use these guidelines as a benchmark for monitoring the level of care being provided to their loved one. The best way to ensure quality care is to get involved and stay involved, keeping track of daily routines and noting any changes. Define and document any concerns and learn how to file a complaint or grievances with the facility. When those processes fail, families may need to seek outside help from a competent attorney who represents victims of nursing home neglect and abuse.
Your role as an advocate began the day your loved one received his or her dementia diagnosis. This is an enormous, and sometimes overwhelming, responsibility. But you are not alone in bearing it. Resources, such as the Alzheimer’s Association guidelines, and experts, including attorneys who focus their work on the Illinois Nursing Home Care Act, are just a click away. Armed with these resources, you will be able to support your loved ones and secure the best quality care for their needs.
Steven M. Levin is the founder of Levin & Perconti Attorneys at Law, a nationally renowned law firm concentrating in all types of serious injury, medical malpractice, nursing home, and wrongful death litigation.
