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Crimes, Calamity, and Confusion: Elder Self-Neglect by Lise McCarthy, PT, DPT, LPF and Jonathan Canick, PhD Ellie Sue is a gracious and well-spoken 86-year-old person who never married or had children. In younger days she was fiercely independent and a strong advocate for herself and others. She started receiving physical therapy (PT), occupational therapy (OT), and nursing home health services 2 months ago. In the preceding 6 months she had lived in a SNF (skilled nursing facility) after short hospitalization following a successful total hip arthroplasty (THA); a seizure 4 months after THA resulted in discharge from SNF to a board and care home. A family member lived with her during her first 30 days home followed by another 30 days of home 24/7 caregiver support. There have been significant indications of functional recovery plateau leading to a planned care conference by the home health team. Ellie Sue and family (all live distantly) have been organizing community volunteers to help her so she can live independently in her cozy home of 50 years. Ellie Sue and family (most are anticipated beneficiaries of her small estate) believe that the health care team is unreasonable. She tells everyone that it is humorous that the team is concerned about her safety. Ellie Sue is not concerned about burning food occasionally because she can use her microwave instead of her gas oven and stove. One supportive family member recently purchased a lightweight fire extinguisher “just to be extra safe.” The family calls and sends messages to her daily that she should just refuse the home health services offered because she can take her own medications even though the nurses insist that Ellie Sue requires medication supervision 4x/ day. Ellie Sue tells the nurses that she trusts her family and that they are being “ridiculous.” You review the chart. Ellie Sue’s recent Tinetti POMA Score of 9/28 demonstrates only a 2-point improvement (not clinically significant) and indicates serious concerns about her balance and stability (i.e., 2/16 Balance subscore, 7/12 Gait sub-score). Ellie Sue refuses caregiver assist with all transfers and with climbing the stairs. She doesn’t see the need for her walker either because she often walks away from it to hold onto the furniture or walls. She refuses to use portable shower equipment or grab bars but consistently asks for help in/out of tub. A score of 75 on the Barthel Index indicates Ellie Sue has a “minimally dependent” functional disability without safety equipment in place. The OT lists several concerns: the home phone does not work and safety equipment recommendations were dismissed by Ellie Sue and her family since her iPhone is working. They are not alarmed GeriNotes • March 2022 • Vol. 29 No. 2
about messages on the iPhone from 8 different companies about possible password breaches and data leaks because that password still works for Ellie Sue to access her bank accounts and favorite internet sites, and allows her to use her phone to call family. The family doesn’t understand why the landline doesn’t work until the caregiver gently offers up that Ellie Sue routinely unplugs it to stop solicitor calls and doesn’t remember to plug it back in. Nursing notes consistently recommend “supervision with medication” because she is unable to demonstrate the 3-step protocol (4x/day) to: 1) identify her cardiac medication from her other medications; 2) take her own blood pressure using a wrist device with single button; 3) accurately assess the BP and determine if she should take the medication that lowers heart rate. Multiple mechanical interventions have not been successful: different types of pill organizers; instructions with pictures; written instructions; mass practice over 2 months. The home health team recognizes that Elder SelfNeglect (ESN) and other forms of abuse are often invisible to observers. A constellation of behaviors by Ellie Sue, her family, and friends may be indicative of patterns of several types of abuse. Ellie Sue, her family, neighbors, and other community volunteers seem to be wellintentioned, outspoken people working together to help her return to independent living. They all believe that the home health care team is over-protective, too restrictive, and not supportive of their community living beliefs. What will you, the PT, do? ESN is a matter of public health Elder self-neglect (ESN) is a public health problem which arose in public awareness in the mid-20th century. Passage of the 1965 Medicare Amendment to the Social Security Act, insuring people with disabilities and elders have access to needed health and medical services, resulted partially from this problem. Knowledge of ESN has significantly expanded in the 21st century as have those identified by health care providers as people at risk of ESN. Persons demonstrating and manifesting ESN lose the ability to safely live independently and safely manage the instrumental activities of daily living (IADLs) and activities of daily living (ADLs). ESN is therefore part of the essential criteria for the Diagnostic and Statistical Manual for Mental Disorders 5th Edition (DSM-5) diagnosis of major neurocognitive disorders (major NCDs), a DSM-5’s 15
