Elderly self-neglect is heartbreaking and hazardous. It is also more common than you think.
On the surface, the sweet, elderly lady who lives next door seems to relish her independence. She keeps herself busy in her garden and always has a kind word for her neighbors. When you stop by to check in, she says she is fine. But she is not.
Looking more carefully at her life, clues emerge, revealing a frayed reality. Her yard, once tended so carefully, is overgrown with weeds. She comes out of her home less and less. And after visiting her, you find she is not taking her medication, hasn’t bathed for weeks and isn’t paying her bills. She has stopped taking care of herself, a condition experts who study and care for the elderly call “elderly self-neglect.”
You are shocked. Why didn’t anyone notice and help?
“Society often attributes negative changes in older adults as common maladies of the normal aging process,” says Jason Burnett, PhD, an assistant professor and researcher with The University of Texas Health Science Center at Houston (UTHealth) Medical School’s Division of Geriatric and Palliative Medicine. “We may think, ‘Oh, they are just getting older, or suffering from depression,’” he says, but the reality is much more complex.
Beyond normal aging
Just how complex becomes apparent when defining what elderly self-neglect is and what it isn’t. Elderly self-neglect is, “the inability or unwillingness of a person to provide themselves with the necessary resources to maintain safety and independence and to live safely and independently,” says Burnett, who also serves as associate director of clinical and behavioral research for the Texas Elder Abuse and Mistreatment Institute (TEAM).
Elderly self-neglect isn’t simply a function of the aging process. Evidence suggests a pathway linking vitamin deficiencies and health conditions including diabetes and depression (see sidebar) may be to blame for a decline in the brain’s executive function (the ability to organize thoughts and activities, prioritize tasks, manage time efficiently and make decisions). When the elderly live alone and don’t have adequate social and medical support, they can have problems accomplishing the activities of daily living. That’s when self-neglect behaviors begin to emerge.
Each case of elderly self-neglect is unique, but a recent study by Burnett and his colleagues identified four types of elderly self-neglect with distinct targets for intervention, including: environmental (neglecting cleanliness of the home or yard); physical and medical (not bathing, taking medications or going to the doctor); financial (not paying bills); and global (neglecting all aspects of personal care).
And while it is often misunderstood, elderly self-neglect is the most common referral to Adult Protective Services nationwide. In Texas, it accounts for approximately 62 percent of self-neglect referrals. It is also serious — elderly people who neglect themselves are two to five times more likely to die when compared to older adults who take care of their needs, according to multiple studies.
“I had never seen anything like this”
Complicating matters, many elderly people are loathe to accept help — fearing that their independence will be taken away, so they try to keep up appearances and hide their struggles. Often it takes a home visit from Adult Protective Services to uncover the extent of the problem.
“Just going into the homes, I had never seen anything like this,” says Sabrina Pickens, PhD, an assistant professor at UTHealth School of Nursing, about making house calls to patients referred by Adult Protective Services. She describes instances of people living in squalor and in dire need of medical attention, recalling a patient with leg wounds infected from the knees down. Despite being prescribed a three-week course of antibiotics, “he never took them, so the wounds worsened to the point of becoming gangrenous. At that point he refused to go to the hospital after multiple attempts by TEAM, Adult Protective Services and EMS (Emergency Medical Services), until the police finally took him.” She says the wounds smelled so bad that, “all persons involved had to wear masks even when leaving the door wide open.”
While this case was extreme, it illustrates the importance of home visits in understanding the true magnitude of self-neglect, says Pickens, a geriatric nurse and former clinical coordinator for TEAM. Sometimes, they see patients with severe declines in executive function that can’t be reversed. In other cases, intervention can make a difference.
Working closely with Adult Protective Services, TEAM’s clinicians visit elderly people in their homes, assess their needs and develop a care plan. TEAM researchers study factors contributing to their self-neglect.
The institute’s focus on elderly self-neglect was bolstered by a 2005 grant from the Consortium for Research in Elder Self-Neglect of Texas (CREST) awarded to leading geriatrician Carmel Dyer, MD, professor and director of Geriatric and Palliative Medicine at UTHealth, and founder of TEAM. The grant funds the development of assessment tools for elderly self-neglect and efforts to identify potential targets for intervention.
The partnership has yielded a wealth of information about self-neglect, several studies and journal articles (including this commentary in the Journal of the American Medical Association) and is helping improve the quality of life for the elderly. For example, after learning that elderly people who self-neglect often lack proper nutrition, TEAM developed an intervention to help increase vitamin D levels. Lack of vitamin D has been linked to declines in muscle strength, falls and Alzheimer’s disease.
“We found that through home visits and directly observed vitamin D supplementation, we were able to increase vitamin D levels in this population over a 10-month period,” Burnett says.
Signs your neighbor (or Dad or Grandma) needs help
While TEAM and agencies that serve the elderly are trained to recognize and treat elderly self-neglect, individuals can also help the elderly members of our community. Identifying elderly self-neglect is the first step, and often a difficult one. Elderly self-neglect can be subtle — especially if you don’t interact frequently with your elderly neighbor or loved one. Burnett and Pickens advise looking out for the following signs of self-neglect in the elderly:
- Living in increased isolation
- Health conditions that change suddenly and dramatically
- Not paying bills
- Not bathing or having poor hygiene
- Not going to the doctor
- Wearing stained or dirty clothes, or not changing their clothes
- Not cleaning their home or maintaining yard
- Significant changes in behavior
If you notice one or more of these signs — seek help. Call 911 if the situation is a health emergency. If the changes are happening more gradually, call Adult Protective Services for a thorough health assessment.
“The idea is to intervene early on,” Pickens says. “These seniors worked hard and helped build America. For them to live in a state of neglect — it is just not right.”