Tag: World Elder Abuse Awareness Day

Advocacy, Family, Toward better care

12 reasons elders are “abandoned” in long-term care

My Alzheimer's Story

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“I feel the responsibility is more on the families than the long-term care system. Too many families abandon their loved ones to the system,” commented Ethelle Lord in response to my post “Elder abuse in long term care facilities needs to be researched now if not sooner.”

I respect Lord’s opinion. However, I also respectfully disagree. It’s easy to point the finger and blame adult children and other family members for “dumping” aging parents and family members in long-term care facilities and leaving them there to languish alone. Because of the stigma and myths associated with the disease, it’s even easier to lay blame when the people in question live with dementia. It’s true that countless long-term care residents go for months, sometimes years, sometimes forever without visitors, and not a soul to advocate on their behalf. But are families the ones at fault? And is it useful to point fingers?

Here are some of the reasons older people are “abandoned:”

  1. many families place aging parents in long-term care facilities after having cared for them to the point of exhaustion; placement is a bid to save their own lives. Here’s one example: “I have kept my mother in law at home with me and my family for 17 yrs. She is basically bed bound now and requires 24/7 assistance with all daily needs. For the last 3 yrs I have literally stayed in the house with her. I am tired, worn out, and frustrated because no one will give me any relief.”
  2. many families are forced to place loved ones in long-term care because they are financially, physically and/or emotionally unable to care for them even though they may want to. Some don’t have the skills, some live too far away, others are “sandwiched.” The decision to place their loved one in care is devastatingly difficult to make; it rips their hearts out, but they feel they have no choice.
  3. some families do not wish to care for aging parents, nor do they feel it’s their responsibility to do to so. And who are we to judge whether that’s right or wrong? Who says children are ultimately responsible for their parents’ quality of life? Parents choose to have children, but if their children as adults choose not to be involved with them later in life, neither society nor government has the right to judge or govern that choice, any more than we can tell people whether or not to have children.
  4. some parents do not wish their families to care for them, they don’t wish to “be a burden;” and they prefer to be placed in long-term care. I have informally asked scores of people whether they would want their children to care for them as they age. Many say definitely not, particularly care partners in online dementia care groups who say they would not want their children to care from them as they have cared for their parents.
  5. some families are estranged; they don’t want to be in contact. They just don’t like each other, plain and simple.
  6. some elderly people do not have children or extended family, and they end up alone as a result.
  7. some adult children who wish to care for their aging parents are precluded from doing so by other family members, agencies or guardians  who have legal control. Sometimes their loved ones are moved without their knowledge, or access is restricted or denied in some way.
  8. some family members are forced by social services or other agencies to place loved ones in care even though it is against their loved one’s wishes as well as their own.
  9. some family members are unable to visit their aging parent after placing them in care because they are overwhelmed by guilt, can’t bear to see their loved one suffer, or think it doesn’t matter because their loved one doesn’t recognize them anymore, etc.
  10. some families implicitly trust long-term care providers and believe their loved one is better off in an institution; they see no need to visit, supervise, or advocate.
  11. some long-term care facilities prevent family members from seeing their loved ones, particularly if the family members criticize care practices, demand change or aggressively advocate for better care. Jenny Moore, the founder of YourVoiceMatters.org.uk, for example, 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. In this way, some long-term care facilities hold their residents “hostage” with family members powerless to help them.
  12. And sadly, some family members place aging parents in facilities for selfish reasons such as wanting to preserve their inheritance. To these people, having their parent’s money after they die is more important than providing them the possible best care while they’re alive.

I was fortunate to be in a position to be able to care in various ways for my mother who lived with dementia. While I chose to do so, I don’t believe adult children are obligated to care for aging parents unless they have a legal responsibility to do so in which case they should fulfill that responsibility or cede it to someone else who will. I believe the overall responsibility for eldercare rests with society in general, the healthcare system in particular (doctors, nurses, healthcare workers, social workers, relevant professional organizations, etc.), government (law makers, law enforcers, regulators, ombudsmen, etc.), long-term care providers (including management and care workers at all levels), and family members who wish to be actively involved.

Regardless of how we collectively decide to handle eldercare moving forward, I believe it’s imperative that we treat our elders with more respect and humanity than we do now.

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

https://myalzheimersstory.com/2016/03/30/20-ways-to-create-dementia-care-homes-away-from-home/

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Advocacy, NHBPS, Toward better care

25 practices long-term care workers know are elder neglect and abuse; it’s time to put a stop to it

My Alzheimer's Story


In Elder Abuse: Global Situation, Risk Factors, and Prevention Strategies, a literature review published in The Gerontologist (Gerontologist, 2016, Vol. 56. No. S2, S194—S2015), elder abuse is said to be “recognized internationally as an extensive and serious problem, urgently requiring the attention of healthcare systems, social welfare agencies, policy makers and the general public.”

Nevertheless, the authors write that they are unable to cover the prevalence of elder abuse in institutional settings “because of the lack of research in this area; no reliable prevalence studies have been conducted of such mistreatment in nursing homes or other long-term care facilities.” Lack of research does not mean that elder abuse does not occur in such institutions. In fact, based on my personal experience and observations as well and the anecdotal evidence of countless others around the world, my sense is that many elders in care, particularly those who live with dementia, are subject to neglect and abuse on a daily basis. I’ve talked about this issue before here: 7 forms of elder abuse and how to spot the signs to stop it; and here: 20 shocking facts about the abuse of elders with dementia.

I believe that neglect and abuse, again particularly with respect to elders who live with dementia, have become normalized in the “care” cultures of many long-term care facilities in North America, the United Kingdom, and elsewhere. This despite the fact that care workers seem able to identify the kinds of practices that constitute neglect and abuse. Here are some named by care workers themselves in focus groups conducted in 2001:

  1. being aggressive with a resident
  2. handling a resident roughly
  3. pulling too hard on a resident
  4. threatening a resident
  5. pushing, grabbing, shoving or pinching a resident
  6. punching, slapping, hitting, or kicking a resident
  7. speaking in a harsh tone to a resident
  8. saying mean things to a resident
  9. yelling at a resident in anger
  10. insulting or swearing at a resident
  11. using excessive physical restraints
  12. throwing something at a resident
  13. not providing oral/dental care
  14. not doing range of motion exercises
  15. not changing residents each time they are wet or soiled after an episode of incontinence
  16. ignoring residents who are bedbound
  17. not offering activities to residents
  18. not doing prescribed wound care
  19. not giving residents regular baths
  20. doing a one-person transfer when the resident requires a two-person transfer
  21. not providing cuing or task segmentation to residents who need that kind of assistance to maximize their independence
  22. skipping scheduled toileting
  23. not helping residents when they ask
  24. not keeping residents hydrated
  25. turning off a call light and taking no action on the resident’s request

Noteworthy by its absence is the inappropriate use of antipsychotic drugs that act as chemical restraints. I have described what some of these practices might look and feel like in real life from the point of view of “Alzheimer’s Annie,” a fictionalized 85-year-old woman who lives with the later stages of dementia, in a series of vignettes based on the Nursing Home Behaviour Problem Scale. Unfortunately, behavioural expressions that result from people with dementia being misunderstood at best, and neglected and abused at worst, are more often than not blamed on them rather than on the real causes for what is viewed by medical professionals as problematic behaviour.

It’s time to take a closer look at this tragic and completely unacceptable state of affairs, demand research into the nature and prevalence of neglect and abuse in long-term care, and most important, to immediately implement steps stop it.

https://myalzheimersstory.com/2016/10/28/6-reasons-why-staff-in-long-term-care-facilities-dont-report-incidents-of-elder-abuse-and-neglect/

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

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Advocacy, Family, Toward better care

20 shocking facts about the abuse of elders with dementia

My Alzheimer's Story

 

The World Health Organization is clear on what constitutes elder abuse: “single or repeated acts, or lack of appropriate action, occurring within a relationship where there is an expectation of trust, which causes harm or distress to an older person.” Experts classify elder abuse in six or seven different categories: financial, physical, sexual, emotional, neglect, systemic, and neglect. More about the types of abuse here.

I’ve taken most of the twenty shocking facts below from a June 2016 BrainXchange webinar “When Dementia and Abuse Issues Collide: Untangling a Wicked Combination,” featuring Dr. Samir K. Sinha, Director of Geriatrics, Sinai Health System and the University Health Network Hospitals in Ontario, Canada. A video of the one-hour webinar appears at the bottom of the post.

 20 shocking facts about the abuse of elderly people who live with dementia

  1. Family members are often the abusers
  2. Research indicates that close to half of people with dementia being cared for by a family member at home experience some form of mistreatment.
  3. Lack of support, education and awareness of family caregivers and institutional care workers contributes to the abuse of persons in their care
  4. We tend to tolerate elder abuse because of our ageist and sexist societal values
  5. Elders who are being abused, particularly those who live with dementia, may not know it
  6. Influencing a person who lives with dementia to change their will and/or witholding care they need and can afford are forms of financial abuse
  7. Elders who are being abused may be afraid to talk about it for fear of the repercussions they believe they will suffer if they do
  8. People with dementia who suffer abuse may not be able to articulate what is going on, may respond with challenging behaviours, and then be medicated and or sedated to manage the responsive behaviour
  9. Abusers (both family members and institutions) may restrict access to the person being abused in order to hide the abuse
  10. Refusing to let family members and/or advocates see elders who live with dementia and to identify potentially abusive situations is in itself a form of abuse
  11. Unintentional abuse is still abuse
  12. Institutional practices and policies legitimize some forms of abuse (e.g. chemical and physical restraints)
  13. Elder abuse is more complicated than child abuse, and therefore more difficult to address
  14. Elder abuse is more common than many people believe
  15. Only an estimated one in 20 cases of elder abuse is thought to be reported
  16. In one Canadian study, only 47% of nurses in community care who witnessed abuse said they tried to stop it, which would tend to suggest that 53% who witnessed abuse DID NOT try to stop it.
  17. Professionals are often reluctant to ask about abuse, perhaps because of a fear that discussing and acknowledging it would necessitate referral of an adult for protection and trigger a punitive response
  18. In a 2008 study, 50% of family caregivers admitted to abusing the elders they cared for in some way, most often verbally.
  19. A 2007 systemic review of the prevalence of elder abuse found that 17% of professional carers reported they had committed abusive acts, and over 80% reported having observed abusive behaviour by others
  20. If we don’t recognize and address elder abuse, it’s likely to increase

Here’s the webinar in full:

https://myalzheimersstory.com/2016/06/15/7-forms-of-elder-abuse-and-how-to-spot-the-signs-to-stop-it/

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

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Advocacy, Toward better care

7 forms of elder abuse and how to spot the signs to stop it

My Alzheimer's Story

Elder neglect and abuse are poorly understood. This post is part of my effort to help change that.

The Royal Canadian Mounted Police (RCMP) defines elderly abuse thus:

“Elder Abuse refers to the violence, mistreatment or neglect that older adults living in either private residences or institutions may experience at the hands of their spouses, children, other family members, caregivers, service providers or other individuals in situations of power or trust.”

Elderly people who live with dementia are particularly susceptible to abuse because they may be less able to identify it or report it when it happens. They are extremely vulnerable, and we must be extra vigilant to ensure they do not fall victim to abuse, particularly by those who are meant to be caring for them.

Here are the forms elder abuse may take (compiled based information from the Canadian Network for the Prevention of Elder Abuse, the Royal Canadian Mounted Police and my own observations), and some of the signs to look for so you can take action to stop it:

Physical abuse

Hitting or handling an older adult roughly are forms of physical abuse, even if there is no injury, as are giving a person too much or too little medication, or physically restraining a person.

What to look for: untreated or unexplainable injuries in various stages of healing, limb and skull fractures, bruises, sores, cuts, punctures, sprains, internal injuries/bleeding, dislocations, black eyes, welts and signs of being restrained.

Sexual abuse

Forcing an older adult to engage in sexual activity is sexual abuse. It may include verbal or suggestive behaviour, not respecting personal privacy, sexual touching, or sex without the person’s consent (rape).

What to look for: venereal disease, genital infections, torn, stained, or bloody underclothing, vaginal or anal bleeding, bruising around the breasts or genital area.

Emotional abuse

Threatening, insulting, intimidating, humiliating and treating an older adult like a child are all forms of emotional abuse, as is preventing them from seeing their family members and friends. Emotional abuse may be difficult to identify and prove and it can devastate a person’s sense of identity, dignity, or self-worth.

What to look for: changes in behaviour such as emotional upset/agitation, biting, rocking, lashing out, repetitive movement. Emotionally abused people may become withdrawn, non-responsive, and/or verbally and/or physically aggressive. In the case of people who live with dementia, this kind of behaviour may wrongly be attributed to the disease.

Financial abuse

Tricking, threatening, or persuading older adults out of their money, property, or possessions is financial abuse. Misusing a power of attorney is a common form of financial abuse; it is often perpetrated by family members and/or legal guardians. Failing to provide elders with the care they need, deserve and can afford in order to preserve their estates for inheritance is a form of financial abuse.

What to look for: sudden changes in bank account or banking practice (unexplained withdrawals of large sums of money by a person accompanying the elderly person), signs that an elderly person has been coerced into signing a document (i.e. contracts, wills, mandates in case of incapacity, powers of attorney), someone is using an elderly person’s cheques without authorization, forging their signature, or misusing their money or possessions. Money and personal effects missing from their home.

Violation of rights and freedoms

It is a violation of rights and freedoms if somebody interferes with an older adult’s ability to make choices, especially when those choices are protected under the law.

What to look for: the  the person stops going to church, temple, mosque or is prevented from engaging in their spiritual practices or traditions; mail or similar information is redirected; privacy is denied; family and friends are prevented from visiting; someone else dictates how they can spend their own money; institutionalization without a legitimate reason. This kind of abuse also includes restricting liberty, as well as denying rights to privacy, access to information, and available community supports.

Neglect

Failing to provide an elder person the necessities of life, such as food, clothing, a safe shelter, medical attention, personal care, and necessary supervision is neglect, which may be intentional or unintentional. Sometimes the people providing care do not have the necessary knowledge, experience, or ability, and are unintentionally neglectful.

What to look for: unkempt appearance, broken glasses, shoes and clothes that don’t fit, lack of appropriate clothing, lack of eyewear, missing hearing aids, dentures and other necessities; weight loss, malnutrition, dehydration, poor personal hygiene, frequent urinary tract infections (UTIs), untreated sores, hazardous or unsafe living condition or arrangements (dirt, fleas, lice, soiled bedding, fecal/urine smell); substandard or inappropriate medical care.

Systemic / institutional abuse

Systemic / institutional abuse refers to rules, regulations, policies, or social practices that harm or discriminate against older adults. Systemic abuse includes rules that are developed for an apparently neutral purpose, but that hurt elderly people. Some institutions operate to meet personal or financial goals that conflict with meeting residents’ health and environmental needs.

What to look for: use of physical restraints as an easy way to prevent falls; or diapering a person instead of helping them to the washroom, to save time or effort; staff shortages lead; overcrowding, mealtimes in shifts; low staff to resident ratios; substandard and/or unsanitary living environments; inadequate care and nutrition; inadequate activity; forced inactivity; no access to outdoors; aggressive / inappropriate staff–client relations; use of chemical restraints such as antipsychotic medications and physical restraints to exert control over the elderly for the sake of convenience and cost saving.

What to do if you see persistent signs of elder abuse:

  1. Report what you see and hear to the elderly person’s family.
  2. If the elderly person’s family members are the perpetrators, report to the appropriate authorities or ombudsmen. Finding the right people and places to report elder abuse in your area is relatively simple using the internet. Search: reporting elder abuse. I’ve included a couple of links below.
  3. Do something. DO NOT REMAIN SILENT.

I believe the abuse of elderly people, particularly those living with dementia, is far more widespread than statistics indicate. Elderly people who live with dementia are still frequently chemically restrained using antipsychotic medication such as quetiapine (Seroquel) and risperidone (Respirdal); they are also physically restrained, and suffer all manner of systemic / institutional neglect.

Eldercare is in a state of crisis in North America and many other parts of the world, and it’s only going to get worse if we don’t wake up and make massive changes. Awareness is great, but a lot more action is required.

Here are some action-oriented links:

https://myalzheimersstory.com/2016/11/21/3-reasons-why-family-and-friends-of-people-who-live-with-dementia-in-long-term-care-facilities-dont-report-abuse-and-neglect/

https://myalzheimersstory.com/2016/11/23/3-more-reasons-family-and-friends-of-people-who-live-with-dementia-in-long-term-care-facilities-dont-report-abuse-and-neglect/

https://myalzheimersstory.com/2016/10/28/6-reasons-why-staff-in-long-term-care-facilities-dont-report-incidents-of-elder-abuse-and-neglect/

https://myalzheimersstory.com/2016/09/08/15-shocking-facts-about-the-abuse-of-elders-with-dementia/

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