Monday, July 1, 2013

How You Can Address or Prevent Elder Abuse

There's an innovative new way of fighting elder abuse -- and it's all about collaboration. Geriatrician Lisa Gibbs, medical director of UC Irvine's Senior Health Center, and Elaine Chen, program manager for the Center of Excellence on Elder Abuse and Neglect and the National Center on Elder Abuse, have combined forces to teach caregivers and family members of older and vulnerable adults what elder abuse is, how to spot it, and what steps to take if they suspect an elderly loved one has fallen victim.

How did the Center of Excellence on Elder Abuse and Neglect come to be?
Lisa Gibbs and Elaine Chen: Prior to the advent of the Center of Excellence, Adult Protective Service (APS) workers and geriatricians (physicians specializing in the care of older adults) were each addressing elder abuse in their own fields. However, it soon became clear that teamwork and collaboration were needed to address the complex issues of elder abuse. In 2003, the Elder Abuse Forensic Center was formed in Orange County, California, and included physicians, psychologists, social workers, victim advocates, and members from law enforcement and the local district attorney's office. This became a very successful model of collaboration and there are now five Elder Abuse Forensic Centers in the United States. As professionals at the University of California, Irvine, developed education and research programs in addition to direct client services, the Forensic Center became a part of a much larger endeavor, the Center of Excellence on Elder Abuse and Neglect.
Established in 2005, the Center of Excellence on Elder Abuse and Neglect acts as the hub for six domains of activity related to elder mistreatment. At the local level in Orange County, California, the Center provides direct services to older adults and works as a leader and member of several interdisciplinary teams, including the nation's first Elder Abuse Forensic Center. Statewide and nationally, the Center provides technical assistance to others who are at earlier stages of evolution in their elder mistreatment services. We also provide multidisciplinary training and research and weigh in on relevant policy issues.

Most recently, we've been expanding our outreach and public awareness work as the National Center on Elder Abuse (NCEA) and with the national grassroots elder justice movement Ageless Alliance. Please visit centeronelderabuse.org for information about some of our Center's milestones.

What kinds of abuse are we talking about?
LG & EC: To quote the National Center on Elder Abuse, we are talking about "any knowing, intentional, or negligent act by a caregiver or any other person that causes harm or a serious risk of harm to a vulnerable adult." This includes both elders and adults with a disability that increases their vulnerability to mistreatment.

There are six primary types of reportable abuse, including neglect, emotional, physical, sexual, financial abuse, and self-neglect. Many states add other specific types. For example, in California, isolation, abandonment, and abduction are also specified in the law.

In four types of abuse, a perpetrator takes action against an elder or adult with a disability. These include emotional abuse, physical abuse, sexual abuse, and financial abuse. However, sometimes "abuse" is actually the omission of action that would ensure the good care, health, and welfare of a person -- often referred to as neglect. Other terms that might be used as synonyms for "abuse" are "mistreatment" and "maltreatment."

In some cases, an older or disabled person cannot or chooses not to care adequately for themselves. Research shows that self-neglect is connected to the depression, dementia, and/or drug/alcohol use.

What are some of the warning signs of abuse that a family member might watch out for?
LG & EC: Although elder abuse may affect anyone, certain medical and cognitive problems cause vulnerability and increase the risk of elder abuse. If a caregiver is needed to assist with daily activities, it is prudent to watch for changes in a family member's personality, behavior, and habits. For instance, a change in cognitive ability may at first affect financial decision-making capacity, making one vulnerable to financial abuse. In the later stages of dementia, persons who require assistance with basic daily activities are at increased risk for neglect. If the one receiving care is verbally or physically aggressive, the risk of elder abuse is even higher. In fact, our colleagues found that nearly half of community-dwelling elders with dementia were experiencing some form of abuse, especially those patients who were verbally or physically aggressive.(1) If that sounds like someone you know, be especially alert. Also, be observant for a caregiver who appears overwhelmed, resentful, or overly burdened.

Financial abuse also commonly occurs in persons without specific medical or cognitive problems, and victims may not ask for help due to embarrassment or shame. Be aware of solicitors, both by phone and in person, and of changes in spending habits or new concerns about finances.
There are many more warning signs. Visit our website for "Red Flags of Elder Abuse and Neglect" in several languages. We have also created a guide, the Geriatric Pocket Doc, that family caregivers have found useful in addressing commonly asked questions about normal aging, as well as warning signs of elder abuse and neglect.

It's shocking to learn that 90 percent of elder abuse occurs at the hands of family members. Why is that figure so high?
LG & EC: Although more research is needed, most cases of elder abuse are perpetrated by known and trusted others, particularly family members (including adult children, spouses, and others). Abusers can be men or women of any age, race, or socioeconomic status. Some of the popular theories for why this happens cite situations with increased vulnerability due to isolation and decreased functional abilities. If one's circle of family, friends, and acquaintances shrinks, there may be fewer watchful eyes to identify and help with at-risk situations. As one's care needs increase, more people may have access to finances and intimate access to one's person. Caregivers are not always suitably equipped to handle the new duties. Consumers and families can help prevent abuse by planning ahead for incapacity, clarifying financial and legal issues, and communicating about family members' roles. Healthcare providers, including social workers, can play a role in helping older adults and families to understand and plan for changing care needs and helping to explore care options. Another way to help protect against elder abuse is to reduce isolation of the older adult and his or her caregivers.

The percentage of abusers that are family members can vary by how elder abuse is defined and how the questions are asked. For example, in a telephone survey of self-reporting elders, Acierno and colleagues found that nearly 60 percent of perpetrators of physical abuse were partners or spouses.(2) A national incidence study including community sentinels and agencies yielded the 90 percent figure, based on observers' and investigators' findings.(3) An elder might feel hesitant to report abuse or might not identify that it's happening to them, so it's all the more important for those who care about the elder to be informed about signs of abuse and neglect and how to respond.

It's also surprising that, by some estimates, 10 percent of all older adults have experienced mistreatment by a caregiver or another close contact. How can one report suspected abuse?
LG & EC: Most often, reports are made to Adult Protective Services, a long-term care ombudsman, and law enforcement. Anywhere in the U.S., call the Eldercare Locator for a referral by dialing (800) 677-1116 for help connecting with the right state or local agency, or visit eldercare.gov. You can also visit the National Center on Elder Abuse State Directory to find agencies in your area. For help reporting financial fraud, www.stopfraud.gov is a good resource. If you think it might be a domestic violence situation, visit www.thehotline.org or call (800) 799-7233.

What else, if anything, can a family member do, especially about suspected abuse in a care facility, where you say up to 36 percent of residents have experienced abuse or neglect?
LG & EC: To learn more about the quality of the nursing home you are interested in, visit Nursing Home Compare, a tool designed to provide detailed information about Medicare- and Medicaid-certified nursing homes in the country. This will help you understand more about the overall environment of the nursing home, as assessed by the licensing agency.

You should also contact the local long-term care ombudsman, serving the town/city of the nursing home where your loved one is residing. Long-term care ombudsmen are professionals who advocate on behalf of residents of long-term care facilities and help to resolve complaints about issues of care. They are dedicated to enhancing the lives of long-term care residents through advocacy, education, and resolving resident complaints. The ombudsman will help you understand the situation, and if a formal complaint is warranted, they can advise you and your family member on how and with whom you would file the complaint. Family and friends who advocate for loved ones in nursing homes are an invaluable asset to their care.

Everyone can do something to help address or prevent elder abuse. Elder abuse destroys victims' lives. Research reveals that victims of elder abuse have an increased risk of illness and death.(4) Many lose their life savings and health, in addition to the loss of dignity and the ability to age gracefully. To learn about ways you can help raise awareness or volunteer to promote dignity and respect for elders, join the grassroots social justice movement www.agelessalliance.org. You can also stay informed by liking the Facebook page for the UCI Center of Excellence and subscribing to their quarterly newsletter.

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How to Get a Free Advance Directive

It's the most important issue nobody ever talks about. Be they healthcare decisions, palliative care, hospice care, or financial planning, end-of-life decisions are critically important and should not be left to be addressed once you or your loved one are in the midst of a terminal illness. Jon Radulovic is vice president of communications for the National Hospice and Palliative Care Organization (NHPCO), which aims to improve end-of-life care.

Tell us about Caring Connections.
Jon Radulovic, vice president of communications: Caring Connections is a national consumer and community engagement initiative working to improve care at the end of life. Caring Connections is a program of the National Hospice and Palliative Care Organization, which works on behalf of hospice and palliative care professionals and providers. Caring Connections offers information about advance care planning, communicating with your doctor and your loved ones, coping with pain, living with a serious illness, understanding hospice and palliative care, coping with grief and loss, and related issues. Since 2004, Caring Connections has provided more than 1.3 million advance directives to individuals free of charge. Caring Connections also provides tools to help organizations working at the community, state, and national levels to improve end-of-life care. Resources to help faith communities, employers, and veterans groups have helped communities have important conversations about caregiving, illness, grief, and advance care planning.

So many people don't think about hospice care until they are faced with having to choose the hospice option for themselves or a loved one, a moment of intense emotion for all involved. What are the key issues people should consider when considering hospice?
JR: Many people never think about hospice until the final days or even hours of life, thereby delaying or missing access to one the most generous benefits Medicare provides -- hospice. One of the key things that we try to help people understand is that the time to think about end of life is long before he or she is in a healthcare crisis. When you or a family member are faced with a medical crisis, it can be hard to think about, let alone talk about, the shift from trying to cure an illness to comfort care. That's why we encourage all people to have conversations about advance care planning early. It's important for patients and families that are dealing with a diagnosis of a serious illness to talk about what would be important if cure is no longer possible or if the side effects from the treatments are too overwhelming. Again, thinking about this and talking with loved ones long before a person is in a medical crisis can mean the difference between dignity and compassion at the end of life or a difficult experience for the patient and loved ones. We should add that talking about these issues while facing a serious or life-limiting illness is very hard. We have heard from thousands of people, that knowing a person's wishes can bring peace of mind to everyone – and that can be a valuable gift when someone is dying. Hospice providers are always happy to talk with families about advance care planning as well as the care and services they offer, so it's never too early to make the call and learn more about hospice or palliative care in your community. Visit www.CaringInfo.org or call (800) 658-8898 to find a hospice in your area.

Hospice care and palliative care are often confused. What is the difference? Why is it important for caregivers to know the difference?
JR: The philosophy of care is the same for both hospice and palliative care. They both focus on whole-person care -- they provide pain and symptom relief while also offering support for emotional and spiritual needs. Family caregivers also receive support and information to help them with the important role they play.

Hospice care focuses on caring, not curing, and, in most cases, care is provided in the person's home. Under Medicare guidelines, someone is eligible for hospice when a doctor states that the person might die within six months if the disease follows the expected course. Care may be provided longer than six months, but the person must meet that initial criteria for care to continue. Hospice care also is provided in freestanding hospice centers, hospitals, and nursing homes and other long-term care facilities. Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations. The hospice benefit pays for most medications, medical equipment, and access to a team of professionals and volunteers. Hospice also supports the family and friends through the grief process.

Palliative care is appropriate for anyone with a serious illness, regardless of life expectancy. One of the things that makes it different from hospice is that a person may receive palliative care and curative care at the same time. The goal, like hospice, is to relieve pain and suffering and provide necessary emotional and spiritual support. Hospices are the leading providers of palliative care services in the U.S.; additionally, many hospitals have palliative care programs available to patients while they are in the hospital.

Advance care planning can make caregiving, decision-making, and managing the illness/condition easier and less stressful for everyone involved. What issues should everyone consider as part of an advance care plan?
JR: It's important to remember that no two people have the same wishes when facing a serious illness, so we encourage people to talk frankly with their family, loved ones, and care providers about what they want. Often people assume that those caring for them know exactly what their wishes would be, but without ever talking about it, that's not usually the case. Part of the advance care planning process involves appointing a healthcare agent. This person would speak for you -- regarding your medical care -- if you are not able to communicate yourself. Part of an advance directive form spells out who your healthcare agent would be. Knowing you have chosen that individual and made your wishes known to him or her can be a significant step to making an illness less stressful. Advance care planning is a process that allows people to explore how they would want care decisions to be made in the event that they weren't physically able to make the decisions for themselves. Some people hope to extend life as long as possible, while others express a desire to focus on relief of pain and other symptoms so they can, to the extent possible, enjoy each day of their life.
Caring Connections offers all the information you need to begin those conversations and then complete an advance directive. State-specific advance directive forms can be downloaded from our website, www.CaringInfo.org, free of charge.

Why should people have an advance directive? What are the most essential issues to address in one?
JR: Advance directives include two separate forms: designation of a healthcare agent and a living will. Complete both the living will and healthcare agent parts of the document -- or simply name your healthcare agent -- as long as it's signed, it is still legal.

A healthcare agent is someone who you choose to speak for you in the event you cannot talk with your doctor about your care decisions. It is important for everyone, at every age, to name a healthcare decision maker. If you are in an accident, have surgery, become unconscious, or have a sudden serious illness and can't talk to your doctors, the law in your state decides who can speak for you. If you are married, then your spouse is typically your default decision maker. If you are an unmarried adult, the decision maker could be your parents, siblings, or adult children. That person may not be the right person to speak on your behalf. We encourage people to select an agent who knows you well, is not afraid of speaking up and asking doctors questions, and who understands how you would want healthcare decisions made.

A living will allows you to document very specific treatments that you would or would not want during a medical crisis. These decisions can include whether you would want to be put on a respirator (a machine to breathe for you), whether you would want a feeding tube, and whether you would want all measures available to keep you alive. Some of those questions may be hard to answer. Your healthcare providers can help you understand some of the medical terms and issues that are more complicated. In some cases or at some points in your life you may want more intensive interventions, while at other points in your life and under other medical conditions you might have different thoughts about the medical procedures you might chose to have. Again, what is so important is that you talk about what would be important to you long before you are faced with a medical crisis. And you should remember that you can change your advance directive or the person you've designated as your healthcare agent at any time. It should also be noted that you do not need a lawyer to complete an advance directive. Visit www.CaringInfo.org/planningahead for a wealth of information to help you.

The average lifespan is approaching 80 years of age, compared to 54 years of age in 1920. Not surprisingly, caregiving has become an increasingly larger role in our society and is often filled by friends and family members who lack formal experience as caregivers. How can people best prepare for their role as caregivers?
JR: One thing family caregivers should do is ask lots of questions from care providers, like doctors and nurses serving their loved ones. There are a number of websites that offer information specifically for family caregivers as well as support networks that can be invaluable. Often caregivers worry about becoming a burden to friends, neighbors, and coworkers or people in their faith community. One of the most difficult yet important things a caregiver can do is ask for help. If you need someone to drive you somewhere, ask. If you need help preparing meals, ask. And if you just need to have some time for yourself, ask. Caring Connections offers information to people who are caring for someone with a serious and life-limiting illness. And when a person is receiving hospice care, the hospice team will help family caregivers by training them for some of the tasks they'll have to do.

Lastly, how can people get involved with, or donate to, Caring Connections?
JR: Caring Connections benefits from the generosity of those who want our work to continue. These donations make it possible for us to continue to have free resources on our website and still mail advance directives to people without access to the Internet. Donations support this important work and may be made through our affiliate organization, the National Hospice Foundation. Complete information about supporting Caring Connections is available online at www.CaringInfo.org/support. We also ask people to let others know about our website and resources. Our hope is that everyone living with an illness, caregiving for someone, or grieving a loss can find the information and support they need. We are honored to be a trusted resource for those in need.

Visit Caring Connections at www.CaringInfo.org or contact the HelpLine at (800) 658-8898.

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