AARP Takes a Look at the Prescribing of Dementia Drugs

Published in the Woonsocket Call on September 15, 2018

Last month, the AARP Public Policy Institute released a report, Insight on Issues, 137, that just might be a good read for physicians, medical societies, insurers, even the Center for Medicare and Medicaid (CMS), and Congressional lawmakers. According to the report’s findings, dementia drugs are often prescribed long-term despite lack of clinical evidence. Of interest to payers, reducing overuse of dementia drugs could result in substantial savings for patients and payers.

The AARP report findings indicate that a majority (70 percent) of elderly dementia patients prescribed dementia drugs are on them long-term despite the lack of evidence that they provide any benefit beyond one year. The study found that some patients took dementia drugs for as long as a decade, costing as much as $20,000 per patient.

“Our research shows some health care providers continue prescribing dementia drugs to patients for much longer than is supported by the clinical evidence,” said Elizabeth Carter, Senior Health Services Research Advisor, AARP Public Policy Institute, and co-author of the study. “Not only do these drugs carry potential side effects, they are costing both patients and the health care system a lot of money,” she says.

With experts predicting a looming Alzheimer’s epidemic, AARP Public Policy researchers saw the need to gather data on the prescription of dementia medications, and the costs associated with the disease currently total more than $270 billion annually and could reach $1.1 trillion by 2050, says Carter. “The efficacy of drug treatment for dementia, however, remains limited and there is little information about how or when to de-prescribe these products. Given the potential for unnecessary costs and potential side effects, we thought that current prescribing patterns warranted a closer look,” adds Carter.

“While there’s a lot of research from clinical trials on the efficacy of dementia drugs, I could find no other study showing the real-world prescribing patterns of these drugs among older adults, notes Carter.

Taking a Closer Look at Prescribing Dementia Drugs

The AARP report takes a look at two types of drugs are approved by the U.S. Food and Drug Administration for the treatment of dementia symptoms: cholinesterase inhibitors (ChEl) (Aricept®, Razadyne®, Exelon®) and memantine (Namenda®, Namenda XR®). Both types may help with symptoms like memory loss and confusion for approximately three to twelve months, but some patients see no improvement.

The AARP report asserts that the benefits of currently-approved dementia drugs are modest and do not affect the underlying cause of the disease or slow the rate of cognitive decline. They also do not delay institutionalization, improve quality of life, or lessen the burden on caregivers. Potential side effects of dementia drugs include low blood pressure and loss of consciousness, abnormally slow heart rate, and hip fracture.

The AARP report noted that claims data from 36,000 Medicare Advantage enrollees who started dementia drug treatment between 2006 and 2015 showed that 58 percent of patients were prescribed a ChEl, 33 percent were prescribed both ChEl and memantine together, and 8 percent were prescribed memantine. The majority (70 percent) of all patients taking dementia drugs were on them for 13 months or longer.

“Older adults typically take multiple medications, often on a long-term basis, and see multiple health care providers without any meaningful oversight of their overall prescription drug regimens,” said Leigh Purvis, Director of Health Services Research, AARP Public Policy Institute, and co-author of the report. “These findings really highlight the importance of ensuring that health care providers have access to reliable information to help them reassess medications that may no longer be of benefit, or even cause harm.”

Nursing Home Industry Weighs In

The AARP Study did not differentiate among patients who live in a nursing facility and those who live elsewhere, says Virginia Burke, President of the Rhode Island Health Care Association, representing the state’s nursing and assisted living facilities. She noted that the AARP study used billing records from a single Medicare Advantage plan, to see how frequently and for how long the drugs were purchased for Medicare beneficiaries.

Burke estimates that the percentage of billing records of nursing facility residents to be analyzed by the AARP researchers to be small because about three percent of those age 65 and older are in a facility at any given time – most of these individuals are age 80 and older.

“Keep in mind that nursing facilities don’t prescribe our patient’s medicines, rather we are required by regulation to administer the drugs prescribed by the patient’s physician. Nurses do have the ability to influence prescribing physicians, however, as evidenced by the reductions in use of anti-psychotics and antibiotics over the past few years,” says Burke. .

Changes in prescribing patterns of dementia drugs patterns starts must start with physicians, says Burke. “I expect that physicians might want to see more data, and perhaps a peer-reviewed replicated study, before it has an effect on their prescribing patterns [of dementia drugs],” she adds.

While Carter recognizes the efforts nursing facilities have made to reduce the unnecessary use of antipsychotic drugs on residents with dementia, there is still more work to do. “I’ve also heard anecdotal reports that some nursing homes are finding ways to skirt the problem by either replacing antipsychotics with other mood-altering drugs or diagnosing residents with conditions, such as bipolar or schizophrenia, that would justify the use of antipsychotics,” she says.

Carter says that AARP is planning to get the word out about their dementia drug prescription study through a partnership with OptumLabs to disseminate the findings to larger audiences, including physicians. “This type of potential overutilization is hardly unique to dementia drugs so we may look at the use of other prescription drugs in a follow-up study,” she says.

Physicians have other options to treat residents with dementia in nursing facilities, adds Carter. “There’s evidence supporting the use of non-pharmacological treatments such as environmental modification and cognitive behavioral therapy,” she says.

CMS Must Take Notice

CMS, the federal agency that oversees the Medicare program and insurers might consider taking a closer look at studies that look at the appropriate use and cost of the long-term prescribing dementia drugs. France’s health system did, says Carter, noting that “They will no longer reimburse for dementia drugs we studied (donepezil, galantamine, rivastigmine and memantine) as of August 2018,” she adds.

But, taking a closer look at the appropriate use, effectiveness and cost of long-term prescribing of dementia, might be a good strategy for Congress to put the brakes on the skyrocketing cost of pharmaceutical drugs.

Carter and Purvis, coauthors of this AARP report, conclude their study by urging health care providers to “regularly assess patients and their drug regimens to ensure these regimens remain appropriate reflecting the changing health status and needs of the patient.” They suggest more research can provide “up-to-date information on a drug’s effectiveness and side-effects that essentially can help increase the practice of de-prescribing medications that may no longer be of benefit, or even cause harm.”

This is sound advice to consider.

For details about AARP’s dementia drug study, go to http://www.aarp.org/dementiadrugstudy/.

Questions Raised About the State’s New Independent Provider Program

Published in the Woonsocket Call on July 15, 2018

In the waning days of the 2018 legislative session, the Rhode Island General Assembly passed legislation (S 2734 Sub A, H 7803 Sub A) that establishes in the Ocean State the “Independent Provider” (IP) model of at-home care, which allows consumers to hire and manage caregivers of their own choice while the state takes on certain responsibilities, such as setting caregivers’ wages, qualification standards and hours. With Gov. Gina M. Raimondo’s signature, the legislation became law on June 29th.

The enacted legislation is backed by the Rhode Island Campaign for Home Care Independence and Choice, a coalition that includes the Senior Agenda Coalition, RI Working Families Party, RI Organizing Project, District 1199 SEIU New England, RI AFL-CIO, Economic Progress Institute and the RI Chapter of the National Organization of Women (NOW). But, although on the losing side of the legislative debate the Rhode Island Partnership for Home Care continues to express its concern about the impact on the delivery by IPs to seniors and persons with disability.

Overwhelming Support on Smith Hill

The health care legislation, sponsored by Senate Majority Whip Maryellen Goodwin (D-Providence) and Rep. Christopher R. Blazejewski (D-Providence), easily passed both the House and Senate Chambers. The Senate Committee on Labor unanimously passed the measure by a 9-0 vote. By a count of 33-0, the legislation easily passed on the Senate floor. Meanwhile, in the other chamber, the House Committee of Finance put its stamp of approval on the measure by a vote of 13-0, with the legislation ultimately passing of the House floor by a vote of 60-11. But, because the House amended the bill (in committee and on the floor), it had to come back to the Senate for consideration again. The Senate vote on the revised legislation was 28-3.

In a statement announcing the new law, Goodwin and Blazejewski, say “By increasing both availability and quality of at-home care options, the new law’s ultimate goal is to move Rhode Island toward greater use of care in the community rather than in nursing facilities, since at-home care is both more comfortable and satisfying for consumers and less expensive than nursing facilities.”

“Presently, Rhode Island ranks 42nd in the nation in terms of investment in home care. Ninety percent of older Americans prefer home care. Not only is it more comfortable for seniors, it’s more cost-effective, as we’ve seen in states like Massachusetts. High-quality home care is what people want, and it saves money. I’m proud to support this effort to help make excellent home care available to more Rhode Islanders,” said Goodwin.

Adds, Blazejewski, “There is little question that people prefer to stay in their homes as long as possible. Particularly now, as the over-65 population in our state is rapidly expanding, Rhode Island must shift more of our long-term care resources toward supporting home care. Our legislation will help provide more options for home-based services, enhance access to them and establish standards that assure high-quality care.”

Hiring, Finding and Managing a Caregiver

Currently around 77 percent of Medicaid funding for long-term services and supports goes to nursing facility care rather than community-based care. Those who use community-based care generally go through agencies or find, hire and manage a caregiver on their own. This bill would create a third option.

Under the Independent Provider model, which has been in place in Massachusetts since 2008, consumers would still be the direct employer who determines when to hire or fire an employee, but the state would take on responsibilities for maintaining a registry of qualified caregivers, and would set parameters such as rates, qualifications and hours.

While the new law stipulates that they are not employees of the state, it would give home care workers the right to collectively bargain with the state over those parameters. Allowing them to organize would ensure that this otherwise dispersed workforce has a unified voice and a seat at the table to tackle the issues facing Rhode Island’s long term services and supports system, said the sponsors.

Consumers in states with independent provider models report higher levels of client satisfaction and autonomy, received more stable worker matches, improved medical outcomes, and reduced unmet need with agencies delivering fewer hours of care relative to the needs of the consumer.

In testimony supporting the health care legislation, Director Charles J. Fogarty, of Rhode Island’s Division of Elderly Affairs (DEA), told lawmakers that the health care legislation supports two goals of DEA, first it would enable elderly and disabled Rhode Islanders who are medically able to stay at home and second, it would address Rhode Island’s direct service provider workforce shortage.

Fogarty said it’s critical for older adults and people with disabilities to have access to the quality of care that is right for them. “In some cases, care from an independent provider they know and trust will best meet their needs to remain independent. In other cases, a home care agency will be the right fit. And for some, particularly those with complex medical needs, our quality nursing homes are the right option,” he said.

When quizzed asked about The Rhode Island Health Care Association’s position, Virginia Burke, President and CEO, recognized the value of home care in the state’s long-term care continuum but stressed that residents in the state’s nursing facilities “are too sick or impaired to mange at home.” She said, “Our only concern with this proposal is the suggestion that it could drain Medicaid funding from the frailest and most vulnerable among our elders in order to pay for a new Medicaid service. Surely our elders deserve good quality and compassionate care in all settings.”

Calling for More Education, State Oversight of IPs

While most who testified before the Senate and House panel hearings came to tout the benefits of bringing IP caregivers into the homes of older Rhode Islanders and persons with disabilities, Nicholas A. Oliver, Executive Director of the Rhode Island Partnership for Home Care, sees problems down the road and calls the new policy “duplicative and costly.”

In written testimony, if the legislation is passed Oliver warns that Rhode Island will be authorizing untrained and unsupervised paraprofessionals to deliver healthcare to the state’s most frail seniors without Department of Health oversight, without adherence to national accreditation standards for personal care attendant service delivery and without protections against fraud, waste and abuse.

Furthermore, his testimony expressed concern over the lack of oversight as to the quality of care provided by IPs to their older or disabled clients. Although the legislation called for supervision from the Director of Human Services (DHS), this state agency does not have the mandated legislative authority to investigate IPs to ensure that patient safety is met and the recipients of care are protected against harm in their homes. Nor does it require daily supervision for adherence to the patient’s authorized plan of care, he says, noting that is a requirement for licensed home health and hospice agencies.

Oliver observes that the legislation does not require IPs to receive the same level of intensive training that Certified Nursing Assistances (CNAs) receive from their home health care and hospice agencies. While the state requires all CNAs to complete 120 hours of initial training, pass a written and practical examination, become licensed by the Department of Health and maintain a license by completing a minimum of 12 hours of in-service training annually, the legislation only requires IPs to take three hours of generalized training and no continuing in-service training is required.

CNAs deliver the same personal care attendant services as the IPs but have a specific scope of practices that they must follow as regulated by the Department of Health and their licensure board while IPs do not have these requirements, says Oliver.

Finally, Oliver says that “to ensure quality of care [provided by home care and hospice agencies], CNAs are supervised by a registered nurse (RN) that is actively involved in the field and who is available to respond to both the patient’s and the CNA’s needs on-demand to reduce risk of patient injury, harm or declining health status and to reduce risk of CNA injury, harm or improper delivery of personal care.” IPs do not have this supervision., he says.

Safe guards are put in place by home health and hospice agencies to ensure the safety of patient and direct care staff, says Oliver, noting that these agencies are nationally accredited by The Joint Commission, the Community Health Accreditation Program (CHAP) or the Accreditation Commission for Health Care (ACHC) in partnership with the Department of Health for compliance of state and federal rules and regulations, as well as national clinical standards for personal care attendant service delivery.

With the Rhode Island General Assembly bringing IPs into the state’s health care delivery system, the state’s Executive Office of Health and Human Services, granted authority by the legislation to develop the program, might just consider establishing a Task Force of experts to closely monitor the progress of the new IP program’s implementation to ensure that quality of care is being provided and to make suggestions for legislative fixes next year if operational problems are identified. Unanticipated consequences of implementing new rules and regulations do happen and every effort should be state policy makers that this does will not happen in Rhode Island with the creation of the new IP program.

To watch Oliver talk about the Rhode Island Partnership for Home Care’s opposition to the enactment of IP legislation that would increase state involvement in the home care sector, go to http://m.golocalprov.com/live/nicholas-oliver.

Rethinking Rhode Island’s LTC Delivery System

Published in the Woonsocket Call on April 12, 2015

AARP Rhode Island releases a state-specific analysis, of the 2014 edition of “Raising Expectations: A State Scorecard on Long-Term Services and Supports (LTSS) for Older Adults, People with Physical Disabilities, and Family Caregivers” that just might give state officials cause for concern, a low rating on its long-term care delivery system, when compared to other states.

The 2011 Scorecard was the first multidimensional assessment of state performance of LTSS. Like this earlier version, the release of the 109 page 2014 report, referred to as the LTSS Scorecard, and its state-specific analysis (prepared by policy consultant Maureen Maigret), measuring how well the nation and each of the states is doing in providing long-term care services, does not bode well for the nation’s littlest state. It finds the Ocean State ranks 38th nationally on 26 performance indicators, with it achieving the lowest rank of all New England States.

“Our analysis provides a closer look at where Rhode Island is keeping pace and where we fall short,” said AARP State Director Kathleen Connell. “The report indicates that, as the state with the highest percentage of persons 85 and older, we face exceptional challenges. It is our hope that the General Assembly and state policymakers find the analysis to be a valuable tool,” she says.

Failing Grades

The 2014 LTTS Scorecard indicates that Rhode Island:

• Ranks 4th highest among states in nursing home residents per 1,000 persons age 65 and over

• Has a high percent of low-care nursing home residents and spends a far higher percent of its LTSS dollars than the national average on nursing home care as opposed to home and community-based services.

• Has some of the highest long-term care cost burdens in the country making private pay long-term services unaffordable for the vast majority of older households.
But, on a positive note, the state-specific analysis noted that Rhode Island’s best progress was made in the Legal and System Supports dimension largely due to the 2013 passage of the Temporary Caregiver Insurance program and Caregiver Assessment requirements for Medicaid Home and Community Based Services (HCBS).

In addition, to revisiting the 19 recommendations made following the release of AARP’s 2011 Scorecard, the more recent 2014 analysis recommends five new major policy initiates to improve the littlest state’s LTSS. Among the recommendations: funding of an Aging and Disability Resource Center; the developing an online benefits screening tool to allow access to income-assistance benefits and conducting outreach programs to increase participation; reviewing the Rhode Island’s Nurse Practice Act to allow nurse delegation of certain health maintenance and nursing tasks to direct care workers; requiring hospitals to provide education and instruction to family caregivers regarding nursing care needs when a patient is being discharged; and exploring emerging medical technologies to better serve home and community based clients.

The current analysis finds that only four recommendations out of the 2011 recommendations have been implemented, most notably those to promote coordination of primary, acute and long-term care and to strengthen family caregiver supports.

Meanwhile, only six recommendations were partially implemented, including the expansion of the home and community co-pay program and authority (but not implementation) under the 1115 Medicaid waiver renewal to provide expedited eligibility for Medicaid HCBS and for a limited increase in the monthly maintenance allowance for persons on Medicaid HCBS who transition out of nursing homes. Finally, nine recommendations, although still relevant, have not been implemented.

Response and Comments

Responding to the release of AARP’s 2014 Scorecard and state-wide analysis, Governor Gina Raimondo says, “we need to ensure that we have a strong system of nursing home care for those who truly need those services, but we must invest our Medicaid dollars more wisely to support better outcomes. We cannot continue to have the fourth highest costs for nursing home care (as a percent of median income of older households) and also rank near the bottom of all states in investments in home and community-based care.”

According to Raimondo, the state’s Working Group to Reinvent Medicaid is looking closely at AARP’s Scorecard and state-specific analysis and Rhode Island’s spending on nursing home and long-term care. Health & Human Services Secretary Elizabeth Roberts has directed her staff to look directly at the proposals recommended by AARP Rhode Island.

“I expect the Working Group will include specific proposals stemming from these findings in their April budget recommendations and their long-term strategic report they will complete in July,” says the Governor.

AARP Rhode Island Executive Director Connell, representing over 130,000 Rhode Island members, was not at all surprised by the findings of the recently released 2014 Scorecard. “Based on benchmarks set in the 2011 Scorecard, it was apparent that there was much work to do,” she says, recognizing that there are “limited quick fixes.”

“Some steps in the right direction will not lead to an immediate shift in the data. This is a big ship we’re trying to steer on a better course. We were encouraged, however, by ‘improving’ grades for lower home-care costs and the percentage of adults with disabilities ‘usually or always’ getting needed support rising from 64 percent to 73 percent,” adds Connell.

Connell says that the Rhode Island General Assembly is considering legislation to improve the delivery of care, which might just improve the state’s future AARP ‘report’ cards.” “In this session, there is an opportunity to improve long-term supports and services with passage of several bills, including one that would provide population-based funding for senior centers,” she says, stressing that it’s a “responsible investment that will help cities and towns provide better services.”

Connell adds, “The proposed CARE Act gives caregivers better instruction and guidance when patients are discharged and returned to their homes. This can be a cost saver because it can reduce the number of patients returned for treatment or care.”

The larger mission for state leaders is the so-called ‘re-balancing’ of costs from nursing care to home to community-based care. That’s where real savings can occur and home is where most people would prefer to be anyway.”

Finally, Virginia Burke, Executive Director of the Rhode Island Health Care Association, a nursing facility advocacy groups, supports the implementation of the policy initiatives recommended by AARP’s state-specific analysis. But, “The primary driver of our state’s nursing facility use is the extremely advanced age of our elders,” Burke says, noting that the need for nursing facility care is more than triple for those aged 85 and older than for seniors just a decade younger. Due to the state’s demographics you probably won’t see a change of use even if you put more funding into community based home services, she adds.

Governor Gina Raimondo and the General Assembly leadership will most certainly find it challenging to show more improvement by the time the next Scorecard ranks the states. Older Rhode Islanders deserve to have access to a seamless system, taking care of your specific needs. Creative thinking, cutting waste and beefing up programs to keeping people in their homes as long as can happen might just be the first steps to be taken. But, the state must not turn its back on nursing facility care, especially for those who need that level of service.

Herb Weiss, LRI ’12 is a Pawtucket writer who covers aging, health care and medical issues. He can be reached at hweissri@aol.com.