3 reasons family and friends of people who live with dementia in long-term care facilities don’t report abuse and neglect

“One in three adults who are in residential care or receiving help at home (in the United Kingdom) fear abuse or physical harm – equivalent to about half a million people.” From a 2013 United Kingdom National Healthcare Services survey.

Elder abuse and neglect are important issues and I continue to explore them in an ongoing series of posts. Most recently, I looked at why staff in long-term facilities don’t report incidents of elder abuse and neglect.

This post is the first of two looking at why family members and friends fail to report incidents or sometimes even chronic abuse and neglect of loved ones in long-term care.

1) Ignorance

Like many care workers, family members and visitors may not understand what constitutes abuse and neglect. They may not know for example that the use of physical restraints (such as recliners that prevent people from getting up) and chemical restraints (such as the inappropriate use of antipsychotic medications) are considered abuse. They may not know that speaking to elderly people in a way that infantilizes them is abusive, or that leaving them in wet or soiled incontinence briefs is neglect.

2) Absence

Family members might not witness abuse and neglect for several reasons 1) they may visit rarely or not at all for a diverity of reasons and therefore don’t see what goes on, 2) they see a “sanitized” version of how their loved one is treated because things are “different” when people visit and/or 3) they are fed a load of tripe about the condition of their loved one by those who are supposed to be providing care. Here’s one example of the latter from family member A.G.:

“When my dad was in the Alzheimer’s facility in California, I called regularly to see how he was doing; each time I was told the same things: he was fine, all was good. After he died I learned everything the facility had told me was a lie. In actuality, my dad had been kept on drugs for the last year and a half of his life because (they claimed) he was violent, and that most days his bed reeked of urine because they were not proactive on attending to his hygiene. Since I didn’t live in the same state as my parents I had no way of knowing how mistreated he actually was.”

Sometimes abuse or neglect and/or the symptoms of abuse or neglect are not immediately apparent. Unless you take your mother to the toilet when you visit, for example, you may not realize she needs to have her incontinence brief changed. You may be told she is changed or toileted every two or three hours, when in fact it’s once in the morning and once at night. Unless you dress and/or undress him yourself, you may not know your father has bruises on his back, arms, and legs or if he is bedridden, that he has pressure sores. You may not know your wife is woken up at 4 a.m. for breakfast or put to bed at 7 p.m. and given drugs to make her sleep – how would you if your visits are always in the afternoons? Abuse and neglect may be hard to detect because they are often relatively easy to hide, particularly when people have few or no visitors, or family members are at a distance.

In October 2016, a class action suit was launched in Canada against Revera Nursing Homes by Lori DeKervor whose father died in 2014 shortly after she found him in excruciating pain with an infected sacral ulcer at one of the operator’s facilities in Toronto. The suit includes a list of complaints against other faciliities run by the same operator, including one incident in which an elderly woman resident was found with maggots in an open wound. If you know anyone who has had a bad experience in a facility run by Revera, please contact Amani Oakley (maindesk@oakleylegal.com), the lawyer handling the class action.

3) Denial

Some family members retreat in denial. I can imagine and fully understand the mental and emotional gymnastics that go along with that: “I wouldn’t leave Mom in a place where she was being abused or neglected, and since I am leaving her in this place, the care must be good otherwise I would be taking her out of there.” The problem is, taking a loved one out of a facility means having to find a new place with all the headaches that entails. Denial can be a form of self-protection.

In a 2016 survey, Penrose Senior Check-In Services found that while 95 percent of long-term care residents say they have been abused or witnessed the abuse of another resident, a whopping 70 per cent of children of aging parents in long-term care facilities answered “not at all likely” to the question “how likely is it that your parent has been abused?” Meanwhile, 32 percent answered “yes” to the question “has your parent complained being abused?” (See the info graphic below.)

More information on elder abuse and neglect at these links: