Everyone who enters a nursing home deserves quality, person-centered care. Too many residents, however, particularly those living with dementia, are being given off-label antipsychotic drugs to control their behavior instead of quality care. These drugs can have serious, life threatening side effects for older people.
Dementia Care without Drugs (Antipsychotics)
Overview
Antipsychotic drugs are NOT a treatment for dementia or Alzheimer’s disease, they are only appropriate for patients with specific mental disorder diagnoses such as Schizophrenia.
When antipsychotics are given to patients without these disorders it is often to control challenging behaviors or for caregiver convenience. Instead of treating the underlying causes of their behavior, these drugs are being used to mask the individual’s symptoms and restrain their behavior. When used this way, antipsychotic drugs are a form of chemical restraint.
Antipsychotic drugs, when given to older adults with dementia, can be unsafe. In fact, they often come with a black box warning about their dangerous, life-threatening risks. A black box warning is the most serious warning required by the US Food and Drug Administration.
You have the right to question the use of these drugs and raise concerns. You have the right to decline medications.
What are my rights?
No one should be given antipsychotic drugs in place of good care! In fact, the federal Nursing Home Reform Act of 1987 guarantees Residents’ Rights and specifically protects residents from the use of chemical and physical restraints – except when needed to treat a medical condition.
Everyone has the right to quality, person-centered, individualized care. Individualized care is based on a thorough evaluation of one’s needs and goals by an interdisciplinary team that includes your own physician and nurse.
You have the right to dignity and the right to make your own choices and treatment decisions. This means, you have the right to know the purpose of your treatment, alternative treatments, and whether the likely benefits outweigh the risks before agreeing to any treatment. You also have the right to decline if you do not feel it is right for you. You have the right to be involved in your own care planning.
Your nursing home is required to provide quality care that enables you to attain and maintain your highest functional level and a quality of life that includes supportive caregiving in a home environment.
You also have the right to a prompt response to any complaints.
What does individualized care mean?
Instead of resorting to antipsychotic drugs to change behavior, caregivers should work to identify and treat the underlying problem the individual is trying to communicate. They do that by assessing or evaluating the individual and the environment. The assessment is used to understand the person’s needs and goals and is used to develop a plan of care that supports each resident. Every resident has a right to individualized care!
The assessment gathers information about the individual’s physical, mental, emotional, and social well-being. It can also help caregivers identify signs of distress, agitation, or confusion caused by untreated infections, dehydration, pain, medication reactions, boredom, loneliness, or other reasons. Doctors or nurses should evaluate possible medical signs for any concerns.
A person’s environment can also affect his or her well-being. Noise, lighting, smells, comfort, food, and interactions with others are all examples of environmental factors that can support an individual or contribute to their distress. After an assessment, the caregivers and individual should work together to develop a care plan that is designed to meet the individual’s needs.
Additional Resources:
What can I do if I am uncertain about my medications or have concerns about my care?
1. If medication was ordered and you are uncertain ask the following questions:
- Why was each drug was ordered?
- What are the potential side effect of each drug?
- What are the possible drug interactions?
- What other approaches to care have been tried?
- When were these alternatives attempted and what were the results or responses?
2. Ask for a meeting to review and work with staff to adapt your plan of care as necessary. Keep the focus on your needs.
3. Monitor the care plan, and if it is not being followed or the plan is not working, speak up!
4. Know your Residents’ Rights guaranteed by the federal 1987 Nursing Home Reform Law.
5. Work closely with caregivers to help them get to know you.
6. If drugs are being considered for behavioral symptoms, ask that other approaches be tried first.
7. Speak with the doctor about medication concerns. Ask about risks and side effects of any drugs.
When are antipsychotics being used?
When residents, including those with medical conditions such as dementia, are unable to express themselves using words, they express themselves through actions. Sometimes these actions are conveying distress. Examples include:
- Anger
- Agitation
- Screaming
- Swearing
- Spitting
- Hitting
- Continuous wandering
- Pacing
- Disrobing
- Crying, sadness
- Repetitive actions
- Paranoia
- Delusions
- Fear
These actions, or behaviors, are signals telling us that something is wrong. They are how the person is trying to communicate.
Caregivers should work to identify the problem being expressed, rather than turning to a drug to change the action. Unfortunately, we sometimes hear references to “problem behaviors” or “problem individuals.” By labeling the individuals or actions as “problems,” caregivers and families may miss the signs of distress, or fail to address the underlying problem, which could be pain, fear, anger, boredom, hunger, or something else. These are situations where, instead of the quality, individualized care they deserve, residents may be given antipsychotic drugs.
What are the risks posed by antipsychotics?
In addition to taking away a person’s autonomy and freedom of movement, chemical restraints can have serious, sometimes life-threatening side effects. Examples include:
- Falling
- Developing pressure sores
- Becoming incontinent
- Having infections
Other side affects you might notice include:
- Thinks, talks, and moves slowly
- Abnormal, involuntary muscle movements
- Has less ability to care for him/herself
- Sleeps through meals
- Has a dry mouth
- Licks lips repeatedly
- Appears more confused
- Inability to sit or stand straight
Many of these symptoms can be caused by other illnesses as well, thus it is important to monitor an individual’s condition carefully and ask for an assessment when you have concerns.
Read more about what the federal rules say about Unnecessary and Antipsychotic Drugs.
Where can I go for help?
Help is available if you have concerns about the drugs prescribed or issues with care.
- Work with the facility or care provider to solve the problem. Share your concerns, ask for solutions.
- Many facilities have family councils. Discuss the problems you are having and get a sense of whether other families are also concerned. Sometimes it’s easier to work together for change.
- Contact the Long-Term Care Ombudsman Program which advocates for individuals living in long-term care facilities. Learn more about the Long-Term Care Ombudsman Program.
- Contact the State’s Survey Agency which assesses whether a facility meets standards of care.
Find your Long-Term Care Ombudsman Program or State Survey Agency at www.theconsumervoice.org/get_help.
Approaches for Providing Good Care
Often, the symptoms, or behaviors, exhibited by residents are their way of telling caregivers that something is wrong, or that they need help or attention. By anticipating or addressing the cause of the distress – pain, fear, anger, tiredness, for example – the resident gets what they need, and they are less likely to exhibit the challenging behaviors. On the Emphasizing Good Care page, one will find information related to this issue, including non-drug interventions.
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