NIH State-of-the-Science Panel Seeks to Dispel Stigma Associated With Incontinence

National Institutes of Health (NIH)

If your older loved one is experiencing incontinence, it is important to let the doctor know. Embarrassment keeps many from seeking the help that could improve or cure the condition. Read on to find out how the National Institute of Health is targeting the silence and distress that too often goes with this common issue.

An independent panel convened earlier this year by the NIH found that fewer than half of individuals experiencing incontinence report their symptoms to healthcare providers without being prompted. The secrecy and distress surrounding these issues erode the quality of life for millions, and hamper scientific understanding and development of prevention and treatment strategies.

“It's time to remove the stigma associated with urinary and fecal incontinence," said C. Seth Landefeld, M.D., Director of the Center on Aging at the University of California San Francisco and chair of the panel. "More than one-fourth of Americans will experience incontinence at some point in their lives. We as a society need to get over our discomfort with this subject so that incontinence sufferers receive the compassion, acceptance and care they need, and our aging population can take steps to prevent incontinence in the future."

Open Communication Between Patients and Healthcare Providers Is Key

The panel found that healthcare providers are well positioned to initiate discussions with patients about incontinence, and recommended further studies to determine when and how to approach patients on the topic. Although further study will be needed to find the most effective wording for asking patients about symptoms, the panel recommended that the ideal approach should address four aspects of the patient's experience: frequency, volume, the degree to which symptoms bother the patient, and the patient's desire for treatment.

Provider education alone is insufficient to improve detection, prevention, and treatment. Public policy changes, including appropriate reimbursement, regulation, and management are also needed. Raising public awareness is a priority. To help reduce the stigma associated with the condition, the panel had the following messages for those experiencing incontinence:

• You are not alone
• Some medical conditions can cause incontinence and can be treated 
• Incontinence does not need to be a part of aging 
• Lifestyle changes and behavioral interventions can prevent incontinence in many cases 
• You should tell your healthcare provider

Though fecal and urinary incontinence can affect men and women at all life stages, both conditions disproportionately affect women, especially those who have given birth, as pelvic muscle injury during childbirth and routine episiotomy are associated with a higher rate of fecal incontinence. As baby boomers approach their sixties, the impact of these already common conditions will only increase.

The 15-member conference panel included experts in the fields of geriatrics, nursing, gastroenterology, obstetrics and gynecology, internal medicine, urology, general surgery, oncology, neurosurgery, epidemiology, biostatistics, psychiatry, rehabilitation medicine, environmental health sciences, and healthcare financing, as well as a public representative.

For More Information

The National Institute on Aging offers a free online brochure with information about urinary incontinence. In many cases, incontinence can be treated! Don’t let embarrassment keep your loved one from managing the condition to the greatest degree possible.

Family caregivers whose loved one has Alzheimer’s or other dementia can find helpful suggestions for dealing with incontinence from the Alzheimer’s Association.

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