Cheri Elson Sperber and Allen G. Drescher, Retired
21 S. 2nd St. ● Ashland ● Oregon ● 97520

The Culture of Care

The signs of a good nursing home include treating the underlying medical problems, relieving pain, and doing everything possible for the residents to feel comfortable and at peace.  Psychoactive drugs should always be the last resort for treating the symptoms of dementia and there are many steps a care facility can take before resorting to medication.

Enlightened care providers are increasingly turning to “comfort care” to enhance the quality of life for their residents.  This approach, as its name suggests, focuses on keeping the residents comfortable using a nurturing, individualized approach looking at the emotional, social, and spiritual needs of their residents, as well as the medical ones.  The goal is to keep residents comfortable, thereby avoiding unnecessary drugs. This can be done through a variety of means:

  1. knowing the residents well enough that basic needs are never a major issue, and needs can be anticipated
  2. embracing a philosophy of individualized care
  3. adjusting the manner and pace of interacting with the residents to be more suitable for the needs of those living with dementia
  4. recognizing and treating pain aggressively
  5. treating family and friends as the true partners in care that they are

The simplest of issues may trigger conflict: an incompatible roommate, room temperature issues, unenjoyable music choices, a loud television.  Someone living with dementia may not be able to effectively communicate what is bothering them and it is up to the care providers to be patient and understanding in discovering the root of the issue.  Common symptoms of dementia, such as restlessness, pacing, and repeated questions, should be both anticipated and accepted.

Individualized care and more attention are some of the best substitutes for drugs.  As your loved one’s advocate, insist on a customized care plan which takes into account personal sleeping and eating schedules, bathing methods, and other services which will keep your loved one happy and comfortable.  A facility which takes the time to really learn about their residents, their history and life’s journey, will be more likely to meet these needs effectlively.

Nursing homes can also stop unnecessary drugging by improving staff training on how to respond to symptoms of dementia.  Talk to the facility where your loved one lives and ask if they have the local Alzheimer’s Association chapter conduct training for their staff.  There are also certified coaches in Teepa Snow’s “Positive Approach to Care” who can provide valuable training for both independent and facility-based care partners.  If on-going training is not part of their protocol, urge them to make it so.

It takes a village to be a care partner to someone living with dementia.  Finding a residential facility able and willing to truly be part of that village will help ensure there is no unnecessary medicating and that your loved one will have the best life possible until the very end.

For further reading:

Encouraging Comfort Care: A Guide for Families of People with Dementia Living in Care Facilities

Teepa Snow

Chemical Restraints – What You should Know

A chemical restraint is any drug used to control behavior in a manner not required to treat the medical or psychiatric condition.  A Human Rights Watch (HRW) report released February 5, 2018, (“They Want Docile; How Nursing Homes in the United States Overmedicate People with Dementia”) reports that in an average week, over 179,000 U.S. nursing home residents are given psychotropic drugs, not because there is a diagnosis of mental illness, but rather to sedate the resident.  That is chemical restraining.

Antipsychotic drugs can be helpful for people diagnosed with illnesses such as schizophrenia; however, in nursing homes they are too often used for their sedative effect.  And what’s worse, when these drugs are used outside their FDA-approved manner, they can do more harm than good. 

As far back as 2005, the FDA issued a “Black Box Warning”, its strongest warning, notifying healthcare professionals that antipsychotic drugs are not indicated for treatment of dementia-related psychosis and increase the risk of death.  In 2008, the FDA stated that both conventional and atypical antipsychotics are associated with an increased risk of mortality in elderly patients treated for dementia-related psychosis. Yet hundreds of thousands of nursing home residents with dementia throughout the country receive these drugs on a daily basis.

These drugs are often prescribed without first obtaining informed medical consent.  To meet this legal requirement, the patient (or their representative) must be informed of the risks and benefits of the proposed drug, as well as alternatives to it.  It is the doctor’s responsibility to obtain informed consent, and an explanation by a nursing home employee will not suffice.  Absent a medical emergency, failure to receive informed consent prior to administering any medication may be deemed battery.

So, what can we do?  First, know that, according the HRW’s report, only 5-10% of nursing home residents in Southern Oregon receive antipsychotic drugs (this figure does not differentiate between residents with or without a diagnosis for which the drug is appropriate).  Second, know your rights, both as a patient and as an advocate for someone unable to speak for themselves.  Do not consent to the use of psychoactive drugs unless certain all other care treatment options have been exhausted.  Insist on being provided written information on the adverse consequences of the proposed drugs, including any “Black Box Warnings”.  Consider a second opinion from a trusted physician if any doubts remain.  Periodically request a complete list of current medications from the facility and review them with a trusted physician.

Psychoactive drugs should always be the last resort for treating the symptoms of dementia.  The signs of a good nursing home include treating the underlying medical problems, relieving pain, and doing everything possible for the residents to feel comfortable and at peace.  We will explore this “culture of care” more deeply in the next article. 

For further reading:

CNN Report

RT News Report

Human Rights Watch Report

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