Green House Blog

Medication, Dementia & the Crucial Need for Advocacy

Nuedexta is used by physicians for the off-label treatment of "behaviors" associate with dementia.
Avanir will pay $96 million to resolve federal False Claims Act allegations that it paid kickbacks and marketed Nuedexta for the off-label use of treating “behaviors” associated with dementia.

We’ve all seen it—the elder who moves into a nursing home or assisted living with a list of medication as long as your arm. As the nurse who would often do the admissions, I would look at this older, frail person, see their lengthy medication administration record (MAR) and wonder how they could swallow all those pills.

Had anyone ever considered whether these pills were doing more harm than good? Had any health professional along this person’s journey through the healthcare system really looked at themas a person? What’s more, had they seen their frailty, confusion, weight loss, depression, and frequent falls and wondered if all or some of their medications could be implicated? Did anyone care?

A recent story in McKnight’s Senior Living illuminates this issue and begs the question, “Where is the advocacy for people living with dementia (PLWD)?” The article describes how pharmaceutical company Avanir recently agreed to pay $96 million to resolve federal False Claims Act allegations that it paid kickbacks and marketed its drug Nuedexta in long-term care communities for the off-label use of treating “behaviors” associated with dementia.

This case highlights just how vulnerable PLWD in long-term care are to the misprescribing of risky medications. Avanir pharmaceutical company marketed the drug to long-term care as an alternative to the use of antipsychotics for PLWD.

In long-term care, where the most frail, vulnerable elders often spend the last part of their lives, there are policies and procedures in place that are meant to ensure their safety and maximize their health and wellbeing. They are there to be taken care of, right?

But who is there to protect them—to advocate for them—when huge pharmaceutical companies target them with risky medications, never meant to be ingested by someone who is frail and older?

According to McKnight’s,“in one example of the impact of these strategies, the government alleged that an Avanir employee reported that one doctor, who was also a paid speaker for Nuedexta, had ‘entire units’ of patients on Nuedexta at the [long-term care] facility where he worked, which contained a large number of dementia patients with behavioral issues.”

Neudexta is a medication approved for patients with PseudoBulbar Affect (PBA), a condition that causes sudden, frequent, and uncontrollable outbursts of crying and/or laughing. PBA is a very uncommon condition that can occur in people with certain neurological conditions. Alzheimer’s and other dementias are not related to PBA…and of course, Nuedexta is a very expensive medication. Public websites list the price of 60 capsules of Neudexta at over $1,200!

I remember very well when Nuedexta was being pushed to help people living in memory care communities. With the focus from the Centers for Medicare & Medicaid Services to decrease the use of antipsychotics, marketers for Nuedexta claimed it could solve the problem of excessive use of antipsychotic drugs and help keep the elders with dementia “calm.”

In the Best Life approach to dementia care, we talk about the imperative for advocacy.

Where were the advocates for all the elders who received prescriptions of Neudexta?

We can do better!

Anne Ellett is a dementia specialist for The Green House Project (GHP), an organization that seeks to radically transform nursing homes by partnering with aging services providers to reinvent care and empower the lives of people who live and work there. Anne created GHP’s Best Life dementia care initiative, which builds on the organization’s core values of meaningful life, empowered staff, and real home.

Seniors Aid New Hampshire at the Pioneer Network Conference

Last month, at the Pioneer Network 2013 Conference, a session entitled “Networking Elders to Provide Them with a Greater Voice,” engaged audience members by inviting Elders themselves to talk about their peer networking and advocacy work.  These Elders were introduced as members of an organization called “Seniors Aid New Hampshire” (SANH). They are a community of Elders that live in Nursing Homes, Assisted Living and Independent living settings throughout their state. With the help of a conference call line, they have joined together each month over the past seven years to host senators, state representatives and members of government agencies in addition to advancing their own community organizing and advocacy agenda. As a result of their organizing, these Elders even provided video testimony in a Senate Committee hearing regarding medication administration.

SANH began in the summer of 2006, when Elders living at different Nursing Homes and Assisted-Living communities in New Hampshire determined that it was “unacceptable for people to go to bed hungry.” The group was assisted by the  New Hampshire Health Care Association in creating a forum for fund-raising and communication to occur. In the early years this group called themselves “Seniors Feed New Hampshire” and in the first year alone raised $42K to assist the New Hampshire Food Bank. In later years the group gained momentum, changed their name and began to focus on other areas of interest that provide opportunities for meaningful resident work and creating communication between Elders living in different long-term care residences across the state.

The session at the Pioneer Network Conference was facilitated by Darlene Cray, a Long-Term Care Ombudsman and Statewide Volunteer Coordinator in New Hampshire and Mark Latham, Administrator of Pleasant View Center, a Nursing Home in Concord, New Hampshire.  In addition to the panel of SANH members, Kathleen Otte from the Administration for Community Living also joined by phone, as well as Jennifer Hilliard, Public Policy Attorney from Leading Age and representatives from Senator Larsen’s office. During the session, Darlene Cray reminded attendees that “When we focus on the ability of the individual, we see Elders.”

The American Healthcare Association and National Center for Assisted Living (AHCA/NCAL) named Seniors Aid New Hampshire as their 2012 National Group Volunteer of the Year.