People with advanced dementia who live in nursing homes have no control over their care. They have very impaired decision-making and reasoning skills and need help with daily self-care functions. In addition to their cognitive difficulties, they may also have a variety of other health problems for which they are taking medication.

The problem is that seniors who can no longer reason effectively cannot question the need for the medications, tests, and treatments that they receive or participate in discussions about risks/benefits and options. They depend on their medical and personal care providers, who should be guided by appropriate nursing home policies, to do this for them.

Nearly 54% of the residents with advanced dementia were prescribed at least one medication that was of questionable benefit to them.

Many seniors also benefit from family members who are vigilant about monitoring their treatment.

Guidelines from the Institute of Medicine recommend that when patients are suffering from life-limiting disease, such as advanced dementia, their care should focus on maximizing the quality of their lives and minimizing unnecessary interventions that could cause distress, side effects, and increased cost.

A recent study found that for many nursing home patients with advanced dementia, this goal is not being met.

The researchers looked specifically at chronic disease medications that are considered to be of questionable benefit to the patients either because they have not shown to help significantly the patient’s clinical situation or because the length of time that it would take for them to make a healthful difference was longer than the patient’s life expectancy.

The study identified about 5400 nursing home residents with advanced dementia in 47 states in the U.S. and examined their medications records. They found that nearly 54% of the residents with advanced dementia were prescribed at least one medication that was of questionable benefit to them.

Regional Differences

The percentage of unnecessary medication varied by region of the country and was as high as 65% and as low as 44%. The most commonly prescribed medications were drugs used for treatment of dementia (such as Aricept, Exelon, Namenda) that have not been shown to be effective in advanced stages, and drugs such as statins (Lipitor, Zocor, Crestor and others), which are used to improve blood lipid patterns.

Most hospice medical directors believe that anti-dementia medications are ineffective at very advanced stages and recent clinical studies do not show a quality of life or psychological benefit to caregivers or patients from these medications. Similarly, the routine use of statins in seniors with advanced dementia has been called into question.

When patients have advanced dementia, they are unable to express any discomfort they may have from side effects of medications.

Residents who were enrolled in hospice end-of-life care or who had DNR (do not resuscitate) orders were less likely to be receiving questionably beneficial medications. Residents of nursing homes with a high prevalence of feeding tubes were more likely to be given such medications.

When patients have advanced dementia, they are unable to express any discomfort they may have from side effects of medications. Giving unnecessary medications may subject them to painful or disabling reactions that go unrecognized by their care providers.

For example, for anti-dementia medications, these adverse reactions include syncope (fainting), arrhythmias, hip fractures, and urinary retention. For statins, they include muscle pain and weakness, increased falls, memory loss and confusion, and changes in blood glucose.

The widespread use of questionably useful medications also adds to the high cost burden of health care and nursing home costs for patients, families, and society.

Advice For Adult Children of Parents With Cognitive-Impairments

The over-medication of severely demented patients is both a quality of life and health care cost issue. The study, published in JAMA, shows that a significant percentage of nursing home patients in advanced stages of dementia may be receiving unnecessary medications that are increasing side effects and raising costs without providing clinical benefit to the patient or the caregivers.

A commentary accompanying the study calls for providers to become more aware of the use of medications of questionable benefit to patients. It also urges thoughtful consideration of tests and procedures for patients with life-limiting illnesses.

If you are the adult child of a parent with dementia who is in long-term care, request a record of the medications your parent is taking, including dosages. Ask about side effects and whether the medication is necessary. It may be that nursing home physicians and staff assume you want them to do everything they can, even in the face of a parent's deteriorating condition. They may welcome clear signs from the family that a parent's comfort and quality of life are top priority.