How Caregivers Can Protect Seniors from Dementia Medication Abuse

Medication abuse is a grave issue for seniors diagnosed with dementia. Far too often, nursing homes and other facilities use powerful antipsychotics and related medication, not to help residents, but rather in an attempt to control their behavior.

These medications aren’t just ineffective. They can also be dangerous, as they can raise the risk of falls, strokes, and metabolic issues, while potentially increasing cognitive decline symptoms as well. Some dementia patients become a shell of their former selves on such medications, sometimes losing almost all engagement overnight.

There are many regulations surrounding the use of medications for dementia, including the need for facilities to obtain informed consent before using them.

However, the rules aren’t always followed, so family members must step up.

Notably, it’s crucial that you start asking questions about your loved one’s treatment. In this post, we’re looking closely at the specific areas to pay attention to and what you can expect.  

Signs There is An Issue

In an ideal world, you’d be informed about any medication changes and could keep an eye on how these affect the senior. But, sometimes, you’ll need to look for indications of an issue instead.

Dramatic Decreases in Engagement

A person’s engagement with the world naturally declines as their dementia progresses. However, a sudden change suggests a medication change or a health issue (like a UTI).

For some families, a previously active and assertive (or aggressive) loved one becomes almost catatonic overnight or suddenly spends much of their day lying in bed and staring, when they never did before.

Changes in Behavior

There may be other behavioral changes too, like spending more time sitting, becoming more mellow, and being less willing to eat. Some seniors even experience more anger and aggression on medication, rather than less.

Medication is one possible cause of such changes, especially if the shifts are sudden and there are no current health problems.

Vague Information

Staff should provide you with complete information about the medications, including any risks. Vague responses, like “the benefits far outweigh the risks” are a key sign that there’s an issue.

You should be getting many more details than this, including what the specific risks are, how often they occur, and how the dose effects the risks and side effects.

Side Effects

Side effects of antipsychotics and similar medications can be minor or severe. Some families report issues of total body rigidity, choking, increased memory impairment, facial contortions, and difficulties moving. Some of these side effects can even occur on small doses of the medication.

While such side effects could have multiple causes, they are a sign to start asking more about your loved one’s medication.

The doctors may not think the medication if causing the side effects. Don’t take that as an answer. It’s often better to discontinue the medication for a while and see whether the side effects improve. This will help you be clear about the effects of the medication on behavior as well.

How to Advocate for Your Loved One

Family caregivers and patients have the right to be informed about any proposed medication changes or additions. They should be part of the decision-making process regarding their loved one’s care.

As such, advocating for your loved one is well within your rights and is a crucial part of keeping them safe.

Here are some fundamental rights and actionable tips for family caregivers:

Choosing the Best Facility in the First Place

Within the limits of your financial circumstances, pay attention to a facility’s reputation, staffing, training, and other factors when selecting the best fit for your loved one.

In my other article, “Ultimate Guide to Selecting a Memory Care Facility” I offer an extensive list of things to check before finalizing your decision to admit your family member into their care. 

Open and Effective Communication

Establish open lines of communication with the healthcare team and facility staff, including the hospice staff, if they are involved. Discuss your loved one’s medical condition, medication changes, and potential side effects regularly. Ensure you know all prescribed medications, their purposes, and any alternatives.

Ask questions and seek clarification whenever needed. Be proactive in expressing your concerns or preferences regarding medication choices and dosages.

Propose that staff consider alternative therapies and approaches to behavioral management, including person-centered care.

Ensure That All Medication Changes Go Through You

Facilities should obtain informed consent for any medication changes.

That consent will normally come from family or from the healthcare power of attorney (HCPA), rather than from the person with dementia. 

Yet, consent isn’t always sought. This may be more likely in understaffed facilities or when staff feel like the pros and cons of a medication is obvious.

You may need to make it abundantly clear that all medications need to be discussed with you before any changes are made. That includes talking to you about changes in type of medication, dose, or frequency.

Review Medication Records

Medication plans should be regularly reviewed and adjusted. You can request a review if you believe a medication is unnecessary or causing adverse effects. Familiarize yourself with your loved one’s medication records, including prescriptions, dosages, and administration times.

Regularly review these records for accuracy and consistency. If you notice any discrepancies or have concerns about the medication regimen, don’t hesitate to bring them to the attention of the facility staff or healthcare provider.

Know Your Rights

Educate yourself about federal and state medication management regulations in senior care facilities. Familiarize yourself with your loved one’s rights, including informed consent and refusing medications. State ombudsman programs can provide valuable information and assistance in navigating medication-related issues.

You can ask to be informed about any proposed medication changes. Care facilities should discuss the risks, benefits, and alternatives with you before initiating treatment.

Seek a Second Opinion

If you have reservations about a particular medication or its side effects, consider seeking a second opinion from another healthcare provider. They can provide an independent assessment and offer alternative treatment options or adjustments to the current medication plan.

Sometimes, the answer may not be to avoid the proposed medication entirely, but to be careful with the dose instead. For some patients, a tiny dose of Seroquel or a similar medication is enough to help calm them and improve agitation, without much risk or any side effects.

Set Up an Advance Directives

If your loved one has an advance directive or a living will, these documents should be honored by the facility when making medication decisions.

Advocate for Non-Pharmacological Approaches

Encourage the use of non-pharmacological interventions for managing challenging behaviors whenever possible. These approaches, such as behavioral therapy, sensory stimulation, personalized care plans, and others listed above can often be more effective and have fewer risks than medications.

Stay Informed

Continuously educate yourself about the medications your loved one takes, their potential side effects, and any new developments in dementia care or geriatric medicine. Being well-informed empowers you to make informed decisions and advocate effectively for your loved one’s best interests.

You can also look at resources that help you to understand more about your loved one’s experience. The book What I Wish People Knew About Dementia is an interesting starting point. This unusual book talks about many of the challenges that those with dementia face, written by a woman suffering from the condition herself.  

Connect with Support Groups

Joining caregiver support groups or associations focused on dementia care can provide valuable insights, resources, and emotional support. These communities can offer guidance on navigating medication-related challenges and connect you with others who have faced similar situations.

By actively engaging with healthcare providers, staying informed, and advocating for your loved one’s rights, you can ensure that medications are prescribed and administered appropriately in senior care facilities. Your dedication and advocacy can contribute significantly to your loved one’s safety and well-being in their senior care journey.

What To Do When You Suspect Foul Play

Family members should be vigilant and proactive in reporting suspicious activity, neglect, or abuse in a memory care facility, nursing home, or assisted living facility. Reporting such incidents is essential to ensure the safety and well-being of their loved ones and to hold facilities accountable for any wrongdoing. Here are the steps family members can take:

Immediately Report to the Facility Management

If you suspect any form of neglect or abuse, your first step should be to report it to the facility’s management or administration. Document your concerns, including the incidents’ dates, times, and descriptions. Request a meeting with facility staff to discuss your concerns and seek a resolution.

Many issues can be addressed through effective communication and collaboration with the facility’s management.

Contact the State Ombudsman

If your loved one still resides in the facility and you believe that the issues persist or are not adequately addressed by the facility’s management, contact your state’s long-term care ombudsman program.

Ombudsman programs are independent advocates for residents’ rights and can investigate complaints, mediate disputes, and work to resolve issues within the facility. They can provide valuable guidance and support during the resolution process.

Be aware, however, that many states are facing a backlog, particularly following the COVID-19 pandemic. When reporting the issue, inquire about the timeline expected for investigation and resolution.

Take Legal Action in Case of Severe Neglect or Abuse

In cases of severe neglect or abuse or when a resident has tragically passed away because of facility negligence, consulting with an attorney may be necessary.

Legal action can help hold the facility accountable and seek justice for your loved one. An experienced attorney specializing in elder abuse or nursing home negligence can guide you through the legal process, help you gather evidence, and pursue a lawsuit if appropriate.

While legal action can’t bring a loved one back, I firmly believe it has been the most potent catalyst for better policies and improving conditions in senior care facilities to date. Facilities are more likely to take policies seriously when noncompliance threatens their bottom line.

Family members must document incidents, keep detailed records, and take action promptly to protect their loved ones and prevent further harm. Reporting suspicions of neglect or abuse is not only a responsibility but also a way to advocate for the rights and well-being of vulnerable residents in senior care facilities.

Why Advocating Is Important

It’s easy to assume that the right facility will provide your loved one with all the care they need without putting them at risk. However, this isn’t a guarantee.

Part of the problem is that the organization and its staff aren’t just caring for your loved one. They’re supporting many different people, while also trying to ensure that everything is efficient and complies with rules and regulations.

Doing so is a juggling act at the best of times. It’s even more challenging when staff are faced with aggressive or noncompliant residents.

Medication may be used not because it is the best way to support patients, but because it is the easiest for the facility. Or, some staff may not be aware of other viable options. So, you need to step in. You need to keep an eye on your loved one to make sure they’re getting the best treatment – even in a well respected facility that you trust.

Final Thoughts

The issue of overmedicating dementia patients is real, scary, and isn’t going away.

However, this doesn’t mean you should avoid facilities entirely. Instead, you need to focus on choosing a good facility, one that focuses on non-pharmacological treatments for dementia – and then advocate for your loved one.

Remember too that dementia care is nuanced.

There may be times when the short-term use of powerful medications is viable for helping the senior. Here, there needs to be a conversation about all the risks and a plan for taking the senior off the medication again.

Such an approach should also only be considered when non-pharmacological approaches have been unsuccessful.