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

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“…too many people are frightened to raise concerns because they think [their visits will be restricted or they will be forced to relocate their loved ones].”  The United Kingdom’s Care Quality Commission

The last “silencer” listed in this second of two posts is the saddest, and probably the major reason the abuse and neglect of elderly people who live with dementia in long-term care facilities are largely unreported and thus ongoing. (The first post is here.)

1) “Blindness”

Some people see and recognize the abuse and neglect of an institutionalized relative or friend, but they choose to say nothing: they turn a blind eye. Maybe they don’t care, maybe they don’t want to make waves, maybe they don’t know what to do or say to change the situation, maybe they are passive, maybe they fear conflict, maybe they feel it’s not their place, or…?

2) Fear

People who recognize abuse and neglect for what they are may choose not to speak out because they are afraid of the repercussions the most frightening of which is that if they complain, their loved one will get even worse treatment. A friend told me the heartbreaking story of her mother, who was bedridden and dying and was being ill treated in a nursing home. Her mother, she said, had begged her not to complain to the staff about the poor care for fear that complaining would worsen rather than improve her situation. The daughter, who had the same fears as her mother, respected her mother’s wish and said nothing, leaving the secret of her suffering to go with her to her grave.

3) Threats and intimidation

In worst-case scenarios, having a relative in long-term care can be like having them held hostage. All the power lies in the hands of facility staff and management; advocates “complain” at the risk of being prevented from seeing their loved one or of having their loved one “kicked out” of the facility, which creates a whole new set of challenges for caring family members.

Preventing family members from seeing their loved ones is in itself a form of abuse that, sadly, appears not to be uncommon. A November 2016 BBC article headlined “Care homes ban relatives who complain” details some of the scenarios leading to family members being banned from visiting their loved ones. The United Kingdom’s Care Quality Commission responded to the article by publishing information, which says in part:

“Care homes are people’s homes. They, their family and friends should not live in fear of being penalised for raising concerns. Good providers know this and we see plenty of excellent practice where managers and staff respond to complaints positively and make sure it is as easy as possible for people to visit their loved ones in a welcoming, friendly environment.

But we know this is not always everyone’s experience, with reports of visiting restrictions and people being forced to leave against their wishes. We also know that too many people are frightened to raise concerns because they think this is going to happen.”

The best intentions of the Care Quality Commission didn’t help Jenny Moore, the founder of YourVoiceMatters.org.uk. Moore was banned from seeing her mother-in-law for three years after being “a habitual and vexatious complainant” because she voiced concerns about her mother-in-law’s care. Her case, while extreme, is not unique. I had a similar experience. During the almost four years my mother resided in a LTCF, I was repeatedly threatened with being denied the right to see her after I raised various concerns and objected to her being inappropriately medicated with antipsychotic drugs for behavioural expressions which should have been addressed non-pharmacologically. Eighteen months before she died, I was ordered to restrict my daily visits to between 1 and 3 p.m., during which time Mom normally slept. These actions aimed to silence me made me more determined to be a voice for our vulnerable elderly who live with dementia and who are abused and neglected in “care.”

When one of Quebec’s most popular radio talk show hosts, Isabel Marechal, featured the issue on her programme in early 2016, the lines were flooded with people calling in with variations of the same story. It’s no wonder family members either don’t speak up or do so anonymously: advocating for better care may actually make things worse in the short term and/or result in being prevented from seeing loved ones. Nevertheless, we must not be silent. If we don’t speak out, nothing will ever change. It is our moral duty to tell the truth of what we witness.

Likewise, we must find ways to educate and empower LTCF front-line staff and family members with respect to identifying and reporting elder abuse and neglect. Better care depends on it.

More information on elder abuse and neglect at these links:

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