Abuse of Elderly Alzheimer's - Dementia Victims - A National Epidemic
- Published on Monday, 28 November 2011 02:01
- Written by Stanton O. Berg
"Caregiving is an inadequate term...it's really LOVE‐giving. You essentially need to be willing to give unconditional love to the person that's suffering from Alzheimer's." - Mark Shriver
One occasionally reads of sensationalized newspaper stories of elderly Alzheimer’s and dementia victims who were subjected to abuse or neglect while they were residents in nursing home or assisted living facilities. Based on such newspaper accounts, one would have the impression that most cases of the abuse or neglect of Alzheimer’s or dementia victims takes place in such facilities. While such sorry events and incidents do on occasion take place in such facilities, they are far from the norm. Recent studies however, have established rather clearly, the troubling fact that most cases of the abuse of Alzheimer’s and Dementia victims actually take place in the family home setting.
The matter of the abuse of the elderly Alzheimer’s and other dementia victims in the home was brought to my attention with startling clarity recently following a story that appeared in the 10 November 2011 issue of USA Today. The cover story was entitled: “Protecting the People Who Took Care of Us”. This story by Janice Lloyd featured a lady Marie-Therese Connolly, a “MacArthur Fellow” who is leading the fight against Elder Abuse. Connolly immediately seized my attention with statistics that approximately 47% of the elderly that are cared for by family members in the home are abused or neglected and the as many as 96% of such cases go unreported. Connolly was quoted as saying that most people ignore elder abuse. “I can’t think of another issue that affects more people in this country where less is being done” she says. “Programs for child abuse and domestic violence are decades ahead. Connolly conceived of and helped draft the “Elder Justice Act,” the first federal legislation to address elder abuse. It was signed into law in 2010 as part of the “Affordable Care Act” but awaits funding. Without the money and implementation, there can be no new programs or infrastructure at national and local levels.”
University Medical Studies-Peer Review Publications
With my interest at a high point, I examined two university studies in the matter of Elder Neglect and Abuse. One was a 2009 study done by University College in London while the other was a year later in 2010 in the US by the University of California at Irvine. The second study confirmed the first study very closely.
The first of the studies by University College in London. (UCL) was reported in the British Medical Journal in January 2009. The study leader and author of the report of findings was Dr. Claudia Cooper from the department of mental health sciences of UCL. The co-author was Professor Gill Livingston of UCL. The results were also reported in the British news publication “The Guardian.”
“Experts from University College London (UCL) questioned 220 carers looking after people with dementia at home. Of these, 115 (52%) had been abusive in some way to the person in their care, with 74 (34%) admitting significant levels of abuse such as swearing often or being insulting. Verbal abuse was the most commonly reported, according to the study…Three (1.4%) carers said they occasionally physically abused the person in their care, although the researchers say those with the most abusive behavior may have been reluctant to admit it”….This is the first representative survey to ask family carers about abuse. ”It shows that abusive behavior towards people with dementia from family carers is common…with a third reporting significant levels of abuse…and half some abusive behavior.” Any strategy for safeguarding vulnerable adults must be directed towards families who provide the majority of care for older people…”
The disturbing English study was followed a year later by a study done by the University of California at Irvine showing that much abuse or neglect is taking place in the family homes where many such elderly Alzheimer’s and dementia victims reside. The US study confirmed the earlier English studies. The study was reported in the Journal of the American Geriatrics Society in March 2010.
The study was done by the “Center of Excellence on Elder Abuse and Neglect” at the University of California, Irvine. “An expert panel met monthly throughout the study, considered the evidence, and decided on occurrences of psychological abuse, physical abuse, and neglect. The pairs of people with dementia and their caregivers were assessed for evidence of mistreatment as well as factors that might be related to mistreatment. Most of the data was provided by the caregivers.
The findings were based on a study of 129 persons who had been diagnosed with Alzheimer’s disease or a related dementia disorder and were living in their family home with their family caregivers. The University researchers visited the Alzheimer’s or dementia victims and their caregivers in their homes.
1. They found that 61 or 47% of the participants with Alzheimer’s – dementia had been mistreated by their caregivers.
2. Specifically 54 or 42% had experienced psychological abuse, 13 or 10% had experienced physical abuse and 18 or 14% had experienced caregiver neglect.
“The following factors or characteristics of the caregivers and he participants with dementia were considered risk factors for one or more types of mistreatment.”
Caregiver: (a.) High anxiety, (b.) depressive symptoms, (c.) few social contacts, (d.) greater perceived burden…
Person with Alzheimer’s-dementia: (a.) Psychological aggression against caregiver, and or (b.) physical pushing or shoving the caregiver.**
**Note: The study does not determine whether these behaviors preceded or followed the mistreatment.
American Psychological Association - 2012 - Paper
The American Psychological Association (2012) at Washington, D.C. published a paper online entitled: “Elder Abuse and Neglect: In Search of Solutions.” APA outlines the problem as:
“Every year an estimated 2.1 million older Americans are victims of physical, psychological, or other forms of abuse and neglect. Those statistics may not tell the whole story. For every case of elder abuse and neglect that is reported to authorities, experts estimate that there may be as many as five cases that have not been reported. Recent research suggests that elders who have been abused tend to die earlier than those who are not abused, even in the absence of chronic conditions or life threatening disease.”
“Most incidents of elder abuse don't happen in a nursing home. Occasionally, there are shocking reports of nursing home residents who are mistreated by the staff. Such abuse does occur-but it is not the most common type of elder abuse. At any one time, only about 4 percent of older adults live in nursing homes, and the vast majority of nursing home residents have their physical needs met without experiencing abuse or neglect.”
“Most elder abuse and neglect takes place at home. The great majority of older people live on their own or with their spouses, children, siblings, or other relatives-not in institutional settings. When elder abuse happens, family, other household members, and paid caregivers usually are the abusers. Although there are extreme cases of elder abuse, often the abuse is subtle, and the distinction between normal interpersonal stress and abuse is not always easy to discern.”
“There is no single pattern of elder abuse in the home. Sometimes the abuse is a continuation of long-standing patterns of physical or emotional abuse within the family. Perhaps, more commonly, the abuse is related to changes in living situations and relationships brought about by the older person's growing frailty and dependence on others for companionship and for meeting basic needs.”
“It isn't just infirm or mentally impaired elderly people who are vulnerable to abuse. Elders who are ill, frail, disabled, mentally impaired, or depressed are at greater risk of abuse, but even those who do not have these obvious risk factors can find themselves in abusive situations and relationships.”
While elder abuse is most often “the infliction of physical, emotional, or psychological harm on an older adult, elder abuse also can take the form of financial exploitation or intentional or unintentional neglect of an older adult by the caregiver.”
Note: The complete report by the APA is a detailed 10 page analyisis of the problem with suggested solutions…the complete report can be found online by use of Google and the above title of the report.
Action on Elder Abuse - AEA - (U.K.)
Action on Elder Abuse is a non profit United Kingdom organization dedicated to preventing and educating the public on elder abuse. They maintain a regular website and also have their own page on Facebook. They operate a AEA - Helpline for the elderly and others to report abuse situations and request help. A 2005 survey of the years results on the helpline indicated that 64% of the calls related to abuse in the family home. 23% related to abuse in a residential care facility home. 5% of the calls related to abuse in a hospital setting.
Elderly Abuse Definitions
Definitions of Elder abuse - (Medical Dictionary –Medicine. net. Com -4/27/2011)
Elder abuse: The physical, sexual, emotional abuse or neglect of an elderly person, usually one who is disabled or frail. Elder abuse is an umbrella term used to describe one or more of the following:
1. Physical abuse is the willful infliction of physical pain or injury. (slapping, bruising, or restraining.)
2. Sexual abuse is the infliction of non-consensual sexual contact of any kind.
3. Emotional or psychological abuse is the infliction of mental or emotional anguish, such as humiliating, intimidating, or threatening.
4. Financial or material exploitation is the improper act or process of an individual, using the resources of an older person, without his/her consent, for someone else's benefit.
5. Neglect is the failure of a caretaker to provide goods or services necessary to avoid physical harm, mental anguish or mental illness, such as abandonment, denial of food or health related services.
Elder abuse is a crime that all health and social services professionals are mandated to report.
Note: It is assumed that abuse by medication or drugs would fall in the area of physical abuse. The Nursing Home Reform Act of 1987 (Federal Law) stated, among other things, that: "The resident has the right to be free from any physical or chemical restraints imposed for purposes of discipline or convenience, and not required to treat the resident's medical symptoms " A chemical restraint is a reduction of the individual's ability to think and act independently by means of a powerful antipsychotic or similar drug.
US National Academy of Sciences has defined elder abuse as: "(a) intentional actions that cause harm or create a serious risk of harm (whether or not harm is intended), to a vulnerable elder by a caregiver or other person who stands in a trust relationship to the elder, or (b) failure by a caregiver to satisfy the elder's basic needs or to protect the elder from harm."
World Health Organization (WHO) defines elder abuse as "a single or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which causes harm or distress to an older person."
All satisfactory definitions of elder abuse encompass two key ideas: that the elderly person has suffered injury, deprivation, or unnecessary danger, and that a specific other individual (or individuals) is responsible for causing or failing to prevent it.
Since the two studies referred to above only attempted to identify and detect abuse in three of the defined areas of elderly abuse in the family home setting, one could assume that an evaluation that considered and evaluated all five (5) areas of abuse to include medication or drugs, would have findings that would suggest over half of the Alzheimer’s and dementia victims are subjected by some form of abuse in the home care settings.
Minnesota Enacts a “Tough Elder-Abuse” Law…The measure passed by the Legislature calls for prison terms of up to 10 years…Minneapolis Star Tribune, Friday April 6th, 2012.
The bill which has Governor Mark Dayton’s support would for the first time punish abusive caregivers with prison time and significant fines if they severely neglect elderly and vulnerable adults.
“It creates a felony provision in state law that would target caregivers who intentionally deprive vulnerable adults of food, clothing, shelter, health care or supervision. Elder advocates and prosecutors say it will close a gaping loophole that for years left vulnerable people without proper protection. In some cases, elders have been found in horrible squalor, left in their own feces or with debilitating bedsores. Some even died at the hands of neglectful caregivers.”
“Minnesota is one of five states that have treated such crimes as misdemeanors with little or no jail time and minimal fines. …the punishment did not match the level of maltreatment in severe cases of intentional harm. The new law would create a maximum penalty of 10 years in prison and a $10,000 fine. It’s going to declare that Minnesota will not tolerate that kind of deprivation of people who cannot fend for themselves” said Iris Freeman, a long time elder advocate at the William Mitchell College of Law Center for Elder Justice and Policy.
Steve Gottwalt, R-St Cloud, a lead sponsor of the bill…called some of the cases and the corresponding lack of punishment outrageous….”I’ve been chasing this bill for eight to 10 years” said Sen. Warren Limmer, R-Maple Grove, who said he was never able to get it out of committee. “It was surprising to me that Minnesota would have less of a reaction to abuse of a human being than to someone’s pet animal” (Referenced prior resistance from the politically powerful care industry.)
Editorial Comments on subject of Domestic Abuse in general
There are those who refuse to believe that the family setting could be the scene of the abuse of another elderly family member who has a form dementia…the above studies by reputable Universities in both the UK and in the US confirm the high incidence of such abuse and the findings are almost identical…in addition I would call attention to the following recent church publication of another common form of abuse in the family setting.
A lead article in one of the Lutheran Church publications (The Lutheran, May 2012) recently caught my eye…”1 in 3 is harmed by domestic abuse.”…the article continues:
“Confronting domestic abuse. The reality is that domestic abuse is much more common than people think. “On Sunday morning, any 1 of 3 women sitting in the pew has been touched by domestic violence,” said Marie Fortune, founder of the Faith-Trust Institute, which works with faith communities to end sexual and domestic violence.
According to a 2012 fact sheet from the Center for Disease Control and Prevention, nearly 3 in 10 women and 1 in 10 men have reported intimate partner violence, but these numbers underestimate the problem. Many victims do not report intimate partner violence to police, friends or family…According to the U.S. Department of Justice, 1 in 3 female homicide victims is murdered by intimate partners.” (Many start out as mental threats and abuse.)
Considering such data, why would it be a surprise to be told that elderly family members with Alzheimer’s or one of the dementia producing diseases is subjected to some form of abuse (Physical, mental or financial) 50% of the time when in the family care setting…
Why the Home is a setting for Elderly Dementia Abuse
A fair question would be why is so much elder abuse taking place in the setting of the family home where one might expect that the least of such abuse would be taking place. Caring for an Alzheimer’s victim in the late stages of the disease is a very large and heavy undertaking. Most victims of Alzheimer’s or other dementia in late stages cannot walk and require a wheel chair. My own observations at Alzheimer’s facilities reveal that approx. 75% are in wheel chairs and most of the others use walkers. Most family homes are not wheel chair friendly and have narrow hallways that are further complicated by soft carpeting. Most late stage Alzheimer’s victims are incontinent. Most must be lifted (transfered) from bed to wheel chair and vice versa. Many are dead weight and may require 2 persons to properly transfer them in order to prevent injuries and skin tears. (June required 2 persons for transfer or movement.) Feeding is often difficult with swallowing problems. Bathing is difficult. All will need to be moved every 2-3 hours when in bed to prevent bed sores. Many times the family home care is provided by one person who may be stressed, frustrated and exhausted. In addition, the Alzheimer’s victim will often have personality changes that may reflect an aggressive attitude and the loved one of previous years may appear to have taken on a new “persona.” or "personal image" foreign to their former self.
A Possible Solution to Elderly Abuse in the Home
When such "Late Stage" disease changes have taken place in the elderly member of the family, the help of a good nursing home may be the solution. The University of California research identified some caregiver risk factors. (a.) High anxiety, (b.) depressive symptoms, (c.) few social contacts, (d.) greater perceived burden. When these factors are viewed together they appear to be a cry for help by a caregiver who just cannot cope. The caregiver could make a good nursing home their “partner” in the proper care of the loved one who is afflicted by Alzheimer’s or other dementia. The nursing home can supply the “heavy lifting” portion in the proper care equation. The family care giver is then free to concentrate on what the family member should be best at doing and that is providing a “Loving Friendly Zone” around the victim that is complete with the Three “C's of Care, Comfort and Concern.
Because “Fear” is thought to be a constant companion of the late stage Alzheimer’s victim, such a loving comfort zone is very important.
Most nursing homes have programs for resident activities 2-3 times daily. Many nursing homes have a chapel for meditation and quiet times as well as weekly religious services.
In addition to trained nursing assistants, LPN’s or RN’s are on the premises 24 hours a day.
The nursing home should never however be a dumping ground for a loved one. It should be a partnership of care with daily visitations by family. When spending time with June I tried to arrive at the Nursing home at 9:00 AM and spent the entire day with June, leaving around 5 PM. My children were each on a weekly scheduled visitation program. Such visitations tend to assure the best of care overall.
Where the family budget does not have the funds for nursing home care, the joint Federal-State Medicaid program will step in to do the job. Most nursing home long term care residents are there under a Medicaid program. While June and I had Long Term Care Insurance that paid most of the bill for June, most people do not have such insurance.
(June and Stan “Dozing Off” in front of the Alter in the little Chapel at the Benedictine Health Care Center Nursing home. June is in her Geri Chair (a chair like a relax-a-lounger on wheels) November 2007.)
June's obituary as printed in the Minneapolis Star Tribune following her death in October 2008 can be found on the top blue navigation strip under the label "In Memoriam" and on the drop down menu as item: