The Silent Crisis of Benzodiazepines, Antipsychotics and Dementia Care

Even with my decades of experience in elder care and gerontology, navigating dementia care for my father was nothing short of overwhelming for my family. Nevertheless, despite all the challenges, my dad spent all but one month of his 18 years with Alzheimer’s, cared for by my mother at home.

Sadly, his last month was spent in a memory care facility (and on hospice care) until he died in the hospital after a bad fall and severe head injury in the facility. He was on lorazepam (Ativan®), in the category of benzodiazepines, despite his risk of falling and a body of scientific evidence describing this medication to be contraindicated for individuals with dementia.

Like many of you caring for someone with Alzheimer’s or dementia, we second-guessed our every move and trusted others.

Since his passing, our family has grappled with a lot of ‘should’ve,’ ‘would’ve’ moments and regrets as we look back and think about what we could’ve done to better advocate for his wellbeing.

While we can’t publicly comment on the details of our active investigation into his death in May 2023, I wish only to empower our readers with information so they avoid the same fate.

In this series of articles, we will take a close look at the use of benzodiazepines, antipsychotics, and related medications and their relevance for dementia. As you’ll see, the combination of medications like antipsychotics and dementia care is often ill-advised, ineffective, and sometimes outright dangerous.

We’ll also explore state medication policies on the prescription of benzodiazepines and antipsychotics, along with the rights patients and families have regarding medication decisions.

It’s crucial for family members to understand these very real risks of antipsychotics in dementia care, especially as healthcare staff may not provide a complete picture. Never make any assumptions. Instead, do your due diligence so that you have a clear picture of the risks and potential benefits of each decision.

How Some Medications Are Misused in Dementia Care

Medication is certainly important in dementia care, especially for treating co-occurring conditions or other health problems, such as antibiotics for an infection.

However, there are also many cases where medications are used inappropriately.

Benzodiazepines, antipsychotics, and other medications that affect the brain are especially relevant here. These are sometimes used as a way to decrease aggression in people with dementia. Sometimes, they’re even used to punish patients who are not behaving in the way the nursing home wants.

The practice is sometimes called a chemical restraint, as the medication actually limits the patient’s ability to engage with the world. Family members speak of previously engaged and dynamic people barely moving or talking once on the medication.

Such issues are especially common in nursing homes with a higher proportion of low income residents and those where skilled nursing hours are low.

It’s a concerning pattern, given the medications used aren’t approved for helping with dementia or dementia-related behaviors.

Yet, the appeal is easy to see. The medications potentially make dementia patients more complacent and easier to deal with, especially on high doses. That’s helpful for short-staffed organizations and those with a strong focus on efficiency.

The Dangers of Benzodiazepines, Antipsychotics and Dementia Care

Benzodiazepines and antipsychotic medications can pose significant risks to patients with dementia, making it essential for healthcare providers and caregivers to exercise caution when considering their use.

The American Geriatric Society (AGS) BEERS criteria, a well-respected authority in geriatric medicine, provides guidelines and recommendations for medications that should be avoided or used with caution in older adults, including those with dementia.

The Impacts of Benzodiazepines

Benzodiazepines, such as Xanax and Valium, are known for their potential to cause cognitive impairment, sedation, and an increased risk of falls. In individuals with dementia, these risks are amplified, as they may already experience cognitive deficits.

Benzodiazepines can further exacerbate confusion and memory problems, making it challenging for dementia patients to function at their best. The AGS BEERS criteria advise against the routine use of benzodiazepines in older adults due to these concerns.  

The Impacts of Antipsychotic Medications

Antipsychotic medications, like Risperdal and Haldol, are often prescribed to manage behavioral symptoms in dementia patients, such as agitation and aggression. However, these drugs come with a host of potential side effects, including an increased risk of stroke, sedation, metabolic issues, and even death.

The AGS BEERS criteria explicitly caution against the use of antipsychotics as the first-line treatment for behavioral symptoms in dementia, emphasizing non-pharmacological interventions and a careful weighing of risks and benefits.

Other Concerning Medications

Recent years have seen an increase in awareness and concern about antipsychotics in dementia care, leading to increased scrutiny.

As a result, the use of these medications has decreased in many places. However, the problem isn’t over. Some nursing homes have simply changed to a different type of psychotropic drug.

This time, the medications are anticonvulsants, which are typically used for treating epilepsy and sometimes schizophrenia. Interestingly, diagnoses of schizophrenia are also increasing in nursing homes, perhaps as a way to make the medication use seem more legitimate.

While the medication is different, the underlying issues are the same as before – medication being used inappropriately with the goal of controlling behavior rather than providing treatment.

Things to Consider

As you can see, using benzodiazepines and antipsychotics for dementia care can put patients at considerable risk. Their dementia symptoms may become worse, they may be more likely to fall and even their risk of death can increase.

Such issues show why caregivers and healthcare providers need to be ultra-cautious when considering such medications. The AGS BEERS criteria is a valuable resource to help guide decisions and prioritize non-pharmacological approaches whenever possible.   

Real-Life Consequences of Overmedication

According to recent statistics, the overuse of medications in dementia care is causing great harm. In 2020, Human Rights Watch reported that thousands of nursing home residents with dementia in the United States were being subjected to the inappropriate use of antipsychotic medications as a chemical restraint.

Margaret’s Story

The story of Margaret, an older woman with dementia, highlights the risks of benzodiazepine use in this vulnerable population.

Margaret’s family trusted her nursing home to provide appropriate care, but she was unnecessarily prescribed Xanax to manage her anxiety. Over time, Margaret’s cognitive abilities deteriorated rapidly, and she became increasingly disoriented and frail.

Her family only learned about the medication’s potential risks after investigating her decline and advocating for a medication review. The situation could have been much worse if Margaret’s family had been less involved or less willing to ‘rock the boat’.

Harold’s Story

The case of Harold serves as another distressing example of the severe consequences of overmedication.

Harold, an 82-year-old man living in a memory care facility, was diagnosed with Alzheimer’s disease. His family, like many others, entrusted the facility to provide appropriate care for their loved one.

However, Harold’s condition began to deteriorate rapidly. He became increasingly agitated and was prone to aggressive outbursts, which the facility staff found challenging to manage.

In response, the facility initiated a medication regimen that included antipsychotic drugs to curb his behavioral symptoms. The decision was made without thoroughly considering non-pharmacological interventions or obtaining informed consent from Harold or his family.

As weeks passed, Harold’s cognitive abilities declined even further. He became lethargic, often unresponsive, and lost interest in activities he once enjoyed. His family grew increasingly concerned and sought an independent evaluation.

It was then discovered that Harold had been overmedicated with antipsychotic drugs, which not only failed to address the underlying causes of his agitation but also exacerbated his cognitive decline. Tragically, Harold’s condition worsened to the point where he required hospitalization, and he eventually passed away due to complications associated with his medication-induced decline.

What These Stories Tell Us

Harold and Marget’s stories are a heart-wrenching reminder of the dangers of overmedication in dementia care. Inappropriate use of antipsychotics can lead to a host of adverse effects, including sedation, cognitive impairment, and even a higher risk of mortality.

It’s essential to take a comprehensive approach when caring for those with dementia.

This includes non-medication interventions, close monitoring, and prioritizing the patient’s well-being and quality of life over resorting to medication to manage challenging behaviors.

Family involvement and advocacy are also crucial in ensuring that loved ones in senior care facilities receive proper care and their rights are protected.

Notably, there are many non-medication approaches that can help with the behavioral symptoms of dementia, including changing the environment and addressing underlying causes of agitation. Such approaches should be thoroughly investigated before medication is considered.

State Regulations of Medication Policies

State regulations have an arsenal of policies and approaches meant to protect the rights and well-being of residents in senior care facilities. State regulations exert a vital influence on the medication policies implemented in nursing homes, assisted living facilities, and memory care facilities.

It’s unclear how well these policies are enforced, meaning that family members may need to push to ensure their loved ones are cared for safely.

Here are examples of how state regulations safeguard patient and family rights:

Licensing and Oversight

States are responsible for licensing and overseeing senior care facilities, which includes monitoring their medication management practices. State health departments and agencies conduct routine inspections to ensure compliance with medication-related regulations.

Medication Administration Training

Many states require staff members who administer medications to undergo specific training and certification. For instance, staff may need to complete courses on medication administration techniques, dosage calculations, and recognizing potential adverse effects.

Medication Storage and Dispensing

States have regulations governing the safe storage and dispensing of medications within these facilities. This includes requirements for secure storage areas, proper labeling, and documentation of medication administration.

Medication Records and Documentation

States often mandate that facilities maintain detailed records of each resident’s medication history, including prescriptions, dosages, and administration times. These records serve as a crucial tool for tracking medication usage and identifying any discrepancies or concerns.

Consent and Informed Decision-Making

Many states emphasize the importance of obtaining informed consent from residents or their legal representatives before initiating or altering medication regimens. This means that families and residents have the right to be informed about proposed medication changes and to provide input into the decision-making process.

Regular Medication Review

Some states require periodic reviews of residents’ medication plans to assess their ongoing necessity and efficacy. These reviews may involve healthcare professionals, pharmacists, and the residents themselves or their representatives.

Rights of Medication Refusal

State regulations often uphold residents’ rights to refuse medications if they can make informed decisions. However, the process for refusing medications may vary by state, with some requiring formal documentation of refusal.

Ombudsman Programs

Many states have long-term care ombudsman programs dedicated to advocating for the rights and well-being of residents in senior care facilities. These programs can assist residents and their families in addressing medication-related concerns and ensuring compliance with state regulations.

Reporting Medication Errors and Incidents

Facilities are typically required to report medication errors, adverse reactions, and incidents to the state health department or relevant authorities. This ensures that any problems with medication management are promptly investigated and addressed.

Quality of Care Standards

States often set specific quality of care standards that include medication management. Facilities that fail to meet these standards may face penalties, including fines or revocation of their licenses.

Medication Review Committees

In some states, regulations require the establishment of Medication Review Committees within senior care facilities. These committees are responsible for regularly assessing the appropriateness of medication regimens, discussing potential alternatives, and ensuring that residents and their families are part of the decision-making process.

Advance Directives and Surrogate Decision-Making

State regulations often align with federal laws like the Patient Self-Determination Act (PSDA), which stipulates that facilities must inform residents of their right to create advance directives, such as living wills and durable powers of attorney for healthcare.

These documents allow residents to specify their preferences regarding medical treatments, including medications, in advance. State laws may also outline procedures for surrogate decision-making in cases where residents cannot make their own healthcare decisions.

Involuntary Medication Reduction (IMR) Programs

Many states have implemented these programs to ensure that antipsychotic medications are used only when necessary. These programs encourage facilities to explore non-pharmacological approaches first and seek informed consent from residents or their representatives before initiating antipsychotic treatment.

Patient Advocacy and Grievance Procedures

State regulations often mandate grievance procedures, allowing residents or their families to voice concerns about medication practices without fear of retaliation. These procedures typically involve a designated staff member or ombudsman who can assist in resolving disputes and ensuring that patient and family rights are respected.

Regular Audits and Inspections

States frequently conduct unannounced audits and inspections of senior care facilities to ensure compliance with medication regulations. These audits help identify any systemic issues or deviations from best practices.

Education and Information Dissemination

Some states require facilities to provide educational materials to residents and their families regarding medication policies and their rights. This ensures that everyone is informed about the medication management process and can make informed decisions.

Resident Councils

State regulations may encourage the formation of resident councils within facilities. These councils allow residents to voice concerns and preferences regarding their care, including medication management. State laws often ensure these councils have a say in facility policies and practices.

State-Specific Policies

In Florida, the Department of Elder Affairs has established regulations requiring assisted living facilities to provide residents and their representatives with detailed information about medication policies, including consent and refusal rights, and procedures for addressing grievances related to medications.

In California, the Department of Social Services oversees assisted living facilities and has regulations governing medication management. These regulations include requirements for staff training, documentation, and medication storage.

Alternative Approaches to Behavior Management

Medication is best reserved as the last possible treatment for behavior management. After all, behaviors have reasons, so it’s best to identify the underlying cause and work with this, rather than just focusing on the behavior itself.

Here are some common non-pharmacological behavior management approaches.

• Person-Centered Care. This type of care focuses on understanding the differences between people, including their history, preferences, and interests, and then adapting treatment based on the individual. What this looks like varies from situation to situation, but could include providing choice about what they eat, choosing activities they are likely to enjoy, and decorating the senior’s room based on previous interests.
• Validation Therapy. This approach aims to acknowledge the emotions and experiences of those with dementia, rather than redirect them to the present time. Doing so can decrease frustration for dementia patients and de-escalate situations.
• Environmental Modifications. Creating safe and soothing environments can noticeably impact those with dementia, helping them to feel less agitated. Other approaches may be used too, like including familiar objects, using music or aromatherapy for sensory stimulation, and ensuring the environment isn’t confusing.

For more details on these strategies, check out our post on How Facilities Can Promote the Best Outcomes for Seniors with Dementia.

What Caregivers Can Do

Informed consent is a crucial part of healthcare, meaning that family members and dementia patients have the right to be informed and consulted about medication decisions.

This means that you have the right to object to proposed medications, especially if the senior is no longer capable of making that decision for themselves.

Here are some key approaches to consider:

• Review medication records. Ensure you know which medications your loved one is taking, what those medications do, and their risks.
• Get a second opinion. Don’t just rely on the staff at your senior’s facility. Ask other experts about the medication and its potential effects. Research online as well, looking at the positive and negative experiences of others.
• Advocate for non-medication approaches. As discussed, medication isn’t the only way to treat behavioral difficulties, nor is it the most effective.
• Know your rights. Spend time learning about state and federal regulations around medication management. What are your rights as a family member? What if you have Power of Attorney?
• Engage with a support group. Support groups provide emotional support, while also informing you about the challenges faced by other caregivers and the solutions they’ve found.  

For more information about what you can do, check out our post on How Caregivers Can Protect Seniors from Medication Abuse. In it, we go into greater depth about what caregivers can watch out for.

Conclusion

Family caregivers should be well-informed about the medication policies in nursing homes, assisted living, and memory care facilities. These policies can vary by facility type and state, but you have the right to be actively involved in medication decisions and advocate for your loved one’s well-being. 

Benzodiazepines and antipsychotic medications can be risky for dementia patients. These medications may lead to cognitive impairment, sedation, falls, metabolic problems, and a higher risk of death. To ensure the safety and well-being of individuals living with dementia, healthcare providers and caregivers must prioritize non-pharmacological interventions and judiciously use these medications.

It’s important to advocate for appropriate medication choices and monitor their use, as statistics show that these medications are often overused. By staying informed and advocating for your loved one, you can help ensure their safety and comfort in their senior care journey.