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Elder abuse in a growing concern, affecting thousands of elderly people in the United States. Unfortunately, the issue remains largely hidden by the families, causing gross under-reporting of the growing crisis. Compounding the problem is the fact that one out of every ten people by the age of 65 has some form of dementia, and that statistic rises to one out of every two by the age of 85. This adds an enormous burden on families who are already ill prepared for the strain of caregiving and who have even less understanding of how to cope with the difficult behaviors associated with dementia. Frustration and the lack of coping skills are a volatile combination. Since the fastest growing segment of the population is the 85 and above age group, the problem will undoubtedly get worse before it gets better, unless a concerted effort is made to educate the public.

1. Recognize the Size of the Problem

Various studies have attempted to estimate the size of the problem of elder abuse, but the true figure remains unknown. Seven years ago the National Center on Elder Abuse estimated that there were 1.01 million victims of elder abuse (2.16 million of self-neglecting elders were included). The median age of victims was 77.9 years of age; 66.4 percent white, 18.7 percent black, 10 percent Hispanic, and less that 1 percent each of Native Americans, Asian Americans/Pacific Islanders. The report indicated that the victims were typically female (68.3) percent.

2. Recognizing the Statistics

Information from the newly released 2000 Survey of State Adult Protective Services Agencies, indicates that there were 473,000 reports of abuse in 2000 nationally, but only 169,946 were ever substantiated. This corroborates the fact that the problem remains protected in a shroud of shameful secrecy by the families. The report indicates that the perpetuators of the abuse are more often male relatives: 30 percent spouse or intimate partners, and 17 percent are adult children.

It is frightening that 303,054 cases couldn't be substantiated, and we will never know how many thousands were never reported to Adult Protective Services. It is estimated that only one out of 14 incidents come to the attention of authorities, and criminal prosecution rarely occurs because by the time law enforcement gets involved, the incident has passed, and the family doesn't want to press charges nor bring attention to their disgraceful family secret.

It is not surprising then that only 16.3 percent of all reported cases of domestic elder abuse come from family members and relatives of the victim. The rest is by concerned friends and neighbors, law enforcement, clergy, banks/ business institutions and the victim.

3. Understanding Caregiver Stress

Overburdened caregivers of chronically ill loved ones ride a roller coaster of emotions, such as feeling overwhelmed, out of control, angry, guilty, sad and never free of being constantly in demand. They lose touch with friends who don't understand, their careers suffer when they must take time off work or quit working altogether, they suffer from sleep deprivation, and they don't get adequate nutrition or exercise. Sometimes they live for years with the oppressive feeling of impending death and the overwhelming frustration of not being able to make their loved ones better. Entrapment is a word frequently used by overstressed caregivers.

The National Center on Elder Abuse reports that the rate of depression for caregivers of non-demented patients is 35.2 percent which is twice that of the general public. Among dementia caregivers, the rate is 43 percent to 46 percent. The Caregiver Health Effects Study revealed the shocking finding that caregivers who experienced the greatest levels of stress were 63 percent more likely to die within the next four years than non-caregivers.

4. Be Aware of Elder Rage

Caregiving is challenging in the best of circumstances, but when a patient becomes aggressive and difficult to manage the caregiver has yet another level of frustration. One study from Columbia University in 1997 found that agitation occurred in 40 percent to 60 percent of demented patients, and aggression from five to 20 percent. Since there are nearly 5 million people diagnosed with Alzheimer's Disease and since seven out of ten are being cared for at home, is it any surprise that elder abuse can occur when an overstressed caregiver reaches their limit with a challenging elder? People who would have never dreamed of crossing the line are finding themselves lashing out in utter frustration.

NCEA reports that 20 percent of caregivers live in fear that they will become violent themselves and this rate increases to 57 percent among caregivers who have experienced violence from those they now care for (Pillemer and Suitor, 1992) The researchers concluded that violence by the care receivers appears to move people who are fearful of becoming violent to actually commit violent acts.

5. Recognize that Denial of Early Stage Dementia is Costly

Compounding the problem is the fact that most people are in denial about eldercare and dementia until they are in a crisis. They don't realize that with the proper treatments and medication (Aricept, Exelon or Reminyl) dementia symptoms might be masked and slowed down by two to five years, keeping a person independent and in Stage One longer, which is intermittent and mild.

6. Identify Mild Cognitive Impairment

Also misunderstood is the fact that Alzheimer's is typically preceded by mild cognitive impairment, which can last five to ten years and 90 percent of these patients will then progress to stage one Alzheimer's, which lasts two to four years. Stage two lasts two to ten years and requires full-time care and stage three, the end, lasts one to three years. Unfortunately, most of the time, many professionals don't get the call until after a crisis, but by then the loved one has already progressed into stage two, and there is not going back to stage one, even with the medications.

7. Recognize the Warning Signs of Alzheimer's

  • Recent memory loss that affects job skills

  • Difficulty performing familiar tasks

  • Problems with language

  • Disorientation of time and place

  • Poor or decreased judgment

  • Problems with abstract thinking

  • Misplacing things

  • 8. Seek Help

    Seeking help early from a geriatric dementia specialist can save families a lot of heartache and money, and save our society the burden of caring for so many elders who decline sooner than need be, and reduce elder abuse. Statistically, families (and many doctors who are not dementia specialists) ignore early warning signs for four years, because they mistakenly believe that intermittent odd behaviors are just a normal part of aging and untreatable senility. It is a costly mistake to make in every regard.

    The Alzheimer's Association reports that by delaying the onset of Alzheimer's disease for five years, the United States could save $50 billion in annual health care costs. Even a one month delay in nursing home placement could save $1 billion a year.

    9. Assist in the Public Awareness Effort

    As our population ages, unless a national media effort is made to deter it, elder abuse will undoubtedly increase. It is an issue that has to be examined as closely as domestic violence, which has been deterred by abundant public service announcements on radio and television. Also, the availability of shelters and counseling for battered women has made a huge difference in the awareness of the issue. The same is needed for elder abuse. Through education and public awareness, another taboo subject can be brought out in the open so offenders will think twice before they lash out, and ideally seek the help of a mental health professional before they cross the line.

    The bottom line is that when caregivers are educated and get their loved ones treated earlier, elder abuse will be drastically reduced as they will have fewer difficult behaviors to cope with. Education and early diagnosis is the key.

    10. Work on Solutions

    Professionals who are not dementia specialists need to learn the early warning signs of dementia and be open to referring their patients to geriatric dementia specialists for early diagnosis. With national education, media awareness and community support, more than 50 million American caregivers can be taught how to cope with the challenges of caregiving.

  • Family doctors and therapists should screen for caregiver burnout when working with individuals and families so that problems can be addressed immediately.

  • Elder care workers in the home or professional settings should be required to undergo criminal background checks.

  • Anyone who suspects elder abuse must be encouraged to report it immediately.

  • Support groups, physical and online, can give caregivers hope.

  • Respite care should be encouraged for caregivers to help manage their stress. The National Center on Elder Abuse provides resources to find assistance, publications, data and answers to elder abuse questions.

  • This article originally appeared in the October 2003 issue of HME Business.

    The Key to Patient Engagement