Community-Living Older Adults with Dementia at High Risk of Having Pain

Older adults with dementia who live at home are at high risk of having pain, according to UC San Francisco researchers, and creative interventions and programs such as home-based palliative care are needed to manage their pain adequately.

Their study is online and will appear in the August issue of Journal of the American Geriatrics Society.

“As a hospice nurse caring for people in their homes, I have seen many patients with dementia who suffer from distressing pain,” said lead author Lauren Hunt, RN, MSN, physiological nursing PhD student at the UCSF School of Nursing. “I was motivated to conduct this research study to understand the issue from the broader national prospective. It turns out that pain is very common in this population and is frequently severe enough to limit activities.”

Dementia is an umbrella term for a number of progressive, eventually terminal neurodegenerative diseases, including Alzheimer’s disease, affecting more than 4.5 million Americans, and the number is expected to more than triple to 14 million in the next 25 years, according to the study. Though more than 75 percent of this population resides in private homes or non-nursing home residential care facilities, little is known about the health of these individuals, especially in relation to pain. Most previous studies have been conducted on nursing home residents.

UCSF researchers used the National Health and Aging Trends Study (NHATS), which covers all Medicare enrollees age 65 and older. In-person interviews are conducted annually in study participants’ homes and include questionnaires and measurement of physical and cognitive characteristics. Participants can be their own respondents or, if unable to respond because of memory or health problems, have individuals familiar with their daily routine respond by proxy.

The first NHATS data collected in 2011 included 8,245 individuals, with 7,609 of them providing complete data on cognitive function.

Of the 7,609 total, 802 participants had dementia, with 63.5 percent (670) experiencing bothersome pain, and 43.3 percent (347) having pain that limited activities. Both totals are significantly higher than those participants without dementia at 54.5 percent with bothersome pain, and 27.2 percent with pain limiting activities.

Correlates of bothersome pain included arthritis, heart and lung disease, less than a high school education, activity of daily living disability, depressive and anxiety symptoms, and low energy. Among those reporting pain, 30.3 percent rarely or never took any relieving medications.

“It was interesting to note that some of the correlates of pain are conditions not typically connected with pain,” Hunt said. “We don’t know exactly why this is, but it may be that some of these diseases, such as heart and lung disease, are precursors to other painful conditions such as peripheral vascular disease. Anxiety, depression and fatigue may be an outcome of pain but also may interfere with a person’s ability to engage in coping strategies that could help reduce pain.”

More than 30 percent of NHATS participants with dementia said they never went outside, and more than 60 percent used assistive devices, making it difficult for them to travel to clinician offices. Few clinicians offer home visits, the researchers noted.

“The extensive challenges associated with the assessment and treatment of pain in older adults with dementia will require creative solutions from researchers, clinicians and policymakers to ensure pain is being adequately managed in this vulnerable population,” said senior author Alexander Smith, MD, MS, MPH, associate professor of geriatrics at UCSF and the San Francisco VA Medical Center.

Other UCSF contributors to the Journal of the American Geriatrics Society study were Ken Covinsky, MD, MPH, Edmund G. Brown Distinguished Professorship in Geriatrics; John Boscardin, PhD, professor of medicine and epidemiology and biostatistics; Kristine Yaffe, MD, professor of psychiatry, neurology and epidemiology, the Roy and Marie Scola Endowed Chair, and vice chair of research in psychiatry; Caroline Stephens, PhD, RN, GNP-BC, assistant professor of nursing; and Yinghui Miao, MPH, senior statistician in geriatrics. Funding was provided by the National Institute of Nursing Research, the National Institute on Aging, and the Clinical and Translational Sciences Institute.

UC San Francisco (UCSF) is a leading university dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care. It includes top-ranked graduate schools of dentistry, medicine, nursing and pharmacy, a graduate division with nationally renowned programs in basic, biomedical, translational and population sciences, as well as a preeminent biomedical research enterprise and two top-ranked hospitals, UCSF Medical Center and UCSF Benioff Children’s Hospital San Francisco.