Part 1 in this series introduced you to the need for increased focus on options for effective palliative and hospice care for patients in late stages of Alzheimer’s disease. Today, we’ll review some of the issues that relate to this need.
Some of the issues:
In late stage Alzheimer’s disease behavioral problems are common and often herald the move to a higher level of care. Not surprisingly, these patients are also experiencing a declining ability to communicate, increasing incontinence episodes and overall greater dependence with most if not all other activities of daily living. They are falling more frequently or have stopped walking altogether. Eating difficulties and weight loss are often part of the clinical picture.
On average, 40 percent of a person’s years with Alzheimer’s are spent in this, the most severe stage of the disease — longer than any other stage, according to Generation Alzheimer’s: The Defining Disease of the Boomer Generation, the Alzheimer’s Association’s recent publication. This important report also notes that by age 80, 4 percent of Americans enter a nursing home. However, for people with Alzheimer’s, 75 percent end up in a nursing home by age 80. Unfortunately, the nursing home design and care models in our community are incompatible with the needs of our late stage Alzheimer’s patients. And yet, these same nursing homes are the only resource available for most families. Where financial resources are available some later stage patients may be effectively cared for in assisted living.
At home, in assisted living or nursing home, these patients often endure inadequate pain, mood and behavioral management. Unable to advocate for themselves they may be subjected to multiple hospitalizations, unnecessary procedures, and inappropriate treatment that prolongs suffering, destroys dignity, and demoralizes families.
And none of this is happening because folks aren’t trying to do what’s right…
Addressing significant behavioral problems present for those in the later stages of Alzheimer’s disease typically begins with hospital admission for several reasons:
While excellent psychiatric care for elders is available in several of our community’s hospitals, the patient length of stay on these special units is financially, rather than clinically driven. The Medicare payment for such a stay is provided at a flat rate based upon the diagnosis. Reimbursement is the same no matter how long the patient is hospitalized. Medicare “Advantage” Plan companies are no better, applying unrelenting pressure to discharge their “members” to a lower level of care. On these units sustainability-forget profitability is a matter of keeping beds full and lengths of stays as short as possible. The mandate for short lengths of stay exists in spite of the clinical wisdom that guides the medication management of the elderly to “start out low, and go slow.”
Precipitous discharges create major challenges with finding placement. Long-term care facilities are often unwilling to accept these behavioral patients with only a brief history of more stable behavior. They must respond to referrals that they are “Unable to meet [the patient’s] needs.” For families, discharge planners, and healthcare providers, there is great frustration with the reluctance of nursing homes to accept these “problem patients.”
It is tempting to believe that these facilities simply do not wish to be burdened—and don’t have to be burdened with more difficult to care for residents. With the shortage of long-term care beds there is absolutely no incentive to bring these unpredictable and potentially dangerous patients into their communities. Late stage Alzheimer’s patients with a history of aggression and other dangerous behaviors require a special, secure environment, calming –not stupefying – medications, and excellent behavior management to safely support all possible quality of life. These traditional nursing home facilities truly cannot meet those needs.
Even when there is bed availability patients with significant dementia are often short changed by the Medicare system when it comes to their skilled care benefits. Medicare provides a period of up to one hundred days of skilled care per episode of illness to insured elders with broken hips, new knees, and crippling strokes. In fact, in order to be eligible for skilled care, patients must be able to participate in and benefit measurably from physical, occupational and speech therapies.
Pervasive confusion, amotivation and poor cooperation render many Alzheimer’s patients inappropriate candidates for traditional skilled care and rehab following their hospitalizations.
And yet, a period of skilled care following a minimum of three days in the hospital is required for entry into most nursing homes.