Students in the Master of Public Policy program at Duke’s Sanford School of Public Policy spent part of their spring semester examining a policy issue for the N.C. Center for Public Policy Research.
The students investigated Alzheimer’s disease in North Carolina, looking at the rates of the disease, caregiving options for patients, and also looked to other states to learn about different options for comprehensive plans.
The students’ report, which includes recommendations for action in our state, is presented in this series of blog posts. The second part, posted today, discusses caregiving options for Alzheimer’s patients and their families, including community support, in-home care, hospitals, and family members. Read Part One in the series, which provides an introduction to Alzheimer’s disease and an overview of prevalence rates.
Note: The pictures used in this series are from the Alzheimer’s North Carolina organization, a nonprofit dedicated to education, support, and advocacy for Alzheimer’s patients and their families. Visit their website here: http://www.alznc.org/.Pictures also featured from The A.R.C. Community, long-term care facilities in North Carolina for residents with Alzheimer’s. www.thearccommunity.com
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Caregiving for Alzheimer’s Patients
The vast majority of long-term services and support for Alzheimer’s patients takes place at home or in the community. Informal caregivers are usually spouses or children of Alzheimer’s patients. They can include such community support groups as meal programs, adult day care, senior centers, and such paraprofessionals as personal care assistants and home health aides. The Alzheimer’s Association reports that 448,000 caregivers in North Carolina provide $6.2 billion worth of unpaid care annually (North Carolina Alzheimer’s Statistics, 2015). Informal caregivers face many challenges as Alzheimer’s progresses in their loved ones (Bynum, 2014). The proportion of informal caregivers to patients will shrink as the population affected by this disease grows (Wimo et al., 2008).
CaregiversInformal caregivers provide many levels and types of care, depending largely on the severity and progression of the disease. As the disease increases in severity, more pressure is put on caregivers. At mild stages, Alzheimer’s patients require light care such as reminders, financial planning assistance, and health care assistance. Later stages often require more intensive care to meet basic bodily needs (Bynum, 2014). Informal care of dementia patients can produce negative psychological and physical effects on caregivers. Caregivers have higher incidences of depression and anxiety (Bynum, 2014). They also report higher stress levels and more physical ailments (Wimo et al., 2008). Early Alzheimer’s detection can reduce stress and uncertainty by allowing caregivers and patients more time to plan for health care, housing, safety, and other crucial services prior to serious cognitive deterioration (Hoffman, 2014). Smooth transitions between care settings and caregivers are an important consideration when caring for Alzheimer’s patients. If mismanaged, a transition between care settings – such as from a family residence to an assisted living facility – will increase a patient’s risk of preventable hospital visits as well as cognitive degradation (Bynum, 2014). Caregiver transition can also cause a permanent reduction in cognitive ability even if the patient later transitions back to the original caregiver (Hoffman, 2014). Caregiver knowledge of and planning for transitions is vital to minimize these negative effects. |
Formal Care for Alzheimer’s
While most medical professionals believe that informal or at-home care is preferable for individuals diagnosed with Alzheimer’s, not all Alzheimer’s patients have that option. As a result, millions of Alzheimer’s patients reside in nursing homes or other formal care settings. Approximately 75 percent of those diagnosed with Alzheimer’s or dementia will spend time in a nursing home at some point during the course of their disease (Bynum, 2014, 537). As of 2012, 60 percent of all nursing home residents suffered from some sort of dementia (Bynum, 2014, 537). By the final stages of Alzheimer’s, few viable substitutes exist for the intensive and skilled care that formal care settings provide (Gaugler et al., 2014).
Alzheimer’s patients heavily rely on both Medicare and Medicaid. Because the majority of Alzheimer’s patients are over the age of 65, Medicare covers almost all of their short-term medical costs. However, Medicare does not cover long-term care. Instead, Medicaid covers most nursing home and long-term care costs. In 2008, Medicaid payments for Alzheimer’s patients enrolled in both Medicaid and Medicare were nineteen times higher than for ‘dual-eligibility’ patients without Alzheimer’s or dementia. On average, one year in a nursing home costs over $75,500 per patient (Bynum, 2014, 537).
Alzheimer’s patients are 2-3 times more likely to be hospitalized with ailments as their peers without dementia (Bynum, 2014, 535). In a study on Medicare claims data, Lin et al found that Alzheimer’s patients were more likely to experience potentially avoidable hospitalizations for a comorbid condition – like diabetes or heart failure – than other elderly persons without dementia (2013). Alzheimer’s patients are three times as costly to Medicare as elderly patients without dementia due to their high rates of hospitalization (Dementia in Elderly Persons in a General Hospital, 2015).
Although the rate of individuals diagnosed with Alzheimer’s will continue to grow, the workforce of healthcare professionals is inadequate. Because the number of physicians trained in geriatrics is limited, many patients see general physicians who do not specialize in dementia (Bynum, 2014, 534). Furthermore, the low pay and bad work conditions for personal care assistants, home health aides, nursing assistants, and others who provide vital care to elderly dementia patients discourage workers from entering and staying in these jobs. Workers who care for Alzheimer’s patients experience higher rates of workplace violence than any other sector in the United States (Bynum, 2014). Median pay for these workers is only $9.57 per hour (Bynum, 2014, 538). As a result, many health care professionals have urged policy makers to create policy initiatives that make this line of work more attractive (Reinhard et al., 2012).1
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Note: Here is information about this student project, provided by the Duke Sanford School of Public Policy. This student presentation was prepared during the spring of 2015 in partial completion of the requirements for PUBPOL 804, a course in the Master of Public Policy Program at the Sanford School of Public Policy at Duke University. The research, analysis, policy alternatives, and recommendations contained in this report are the work of the student team that authored the report, and do not represent the official or unofficial views of the Sanford School of Public Policy or of Duke University. Without the specific permission of its authors, this report may not be used or cited for any purpose other than to inform the client organization about the subject matter. The authors relied in many instances on data provided to them by the client and related organizations and make no independent representations as to the accuracy of the data. |
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