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Abuse of Alzheimer’s Patients Common Among Family Caregivers
Alzheimer’s Disease | Abuse of Alzheimer’s Patients Common Among Family Caregivers.
Abuse of Alzheimer’s Patients Common Among Family Caregivers
Mon, 09 Mar 2009 12:09:00 PM EST
More than half of those who cared for a relative with Alzheimer’s or another form of dementia admitted to researchers that they had mistreated them, an alarming study from the U.K. reports. Most of the abuse consisted of occasionally yelling at or disparaging the person with Alzheimer’s.
The study, from researchers at University College in London, found that the strain of caregiving can take its toll, even among close family members. While about half of the 220 caregivers surveyed reported making occasional verbal threats to those they cared for, about a third said they had committed more frequent verbal abuse. Only three of those surveyed admitted to more serious physical abuse like hitting, slapping or shaking.
“Many people think about elder abuse in terms of ‘lashing out’ and other similar acts, but abuse can be as simple as shouting or swearing at the person being cared for,” said lead author Claudia Cooper of the university’s department of mental health sciences. The findings were published in the British Medical Journal.
The authors noted that the results were not surprising, given that people with Alzheimer’s are typically cared for in the home by family or friends who often have little or no outside help or support, and the stress of caregiving can be overwhelming at times.
“This is the first representative survey to ask family carers about abuse,” Dr. Cooper said. “We found few cases of physical or frequent abuse, although those with the most abusive behavior may have been reluctant to report it or take part in the study in the first place.”
The researchers said that health care professionals tended to avoid the issue when talking to relatives.
They wrote: “Professionals are often reluctant to talk 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 such as removal of the person with dementia.
“This may result in an ‘all or nothing’ approach to abuse, where it is ignored until the problem becomes serious.
“Similarly, clinicians may not consider abuse when seeing most carers, if abuse if perceived as a rare action purposefully perpetrated by amoral abusers.”
Study co-author Gill Livingston said that it’s important to recognize the problem of abuse among family members who care for a loved one with Alzheimer’s.
“Our findings suggest that any strategy for safeguarding vulnerable adults must be directed towards families who provide the majority of care for older people, rather than exclusively at paid carers,” he said.
“The vast majority of family carers do a fantastic job under very difficult circumstances,” he added. “Health care professionals can be reluctant to ask about abuse by family carers, but this attitude can be very unhelpful to carers who are worried about their own actions and want to talk about them and get help. Considering elder abuse as a spectrum of behaviors could help professionals to ask about it and therefore offer assistance.”
The toll of caring for a loved one with Alzheimer’s is known to carry an increased risk of physical illness and depression in caregivers. Enlisting other family members and friends to help with daily caregiving tasks can be an important part of helping to maintain mental equanimity and lessen stress among caregivers.
Counseling and support of family members can also be of significant benefit for those caring for a loved one with Alzheimer’s, research shows. [See the ALZinfo.org story, “Counseling and Support Benefits Alzheimer’s Caregivers, at http://www.alzinfo.org/newsarticle/templates/newstemplate.asp?articleid=317&zoneid=2%5D
By ALZinfo.org. Reviewed by William J. Netzer, Ph.D., Fisher Center for Alzheimer’s Research Foundation at The Rockefeller University
Source:
“The CARD Study – Abuse of People With Dementia by Family Carers,” published online in the British Medical Journal, 23 January, 2009.
The Best Alzheimers Caregiver Tool of Them All, Harvey
I love watching these videos of Dotty & Harvey, her talking parrot. What a neat tool in caregiving for Alzheimer’s & Dementia-related diseases. I can’t wait to bring Harvey with me to work & see him in action live. Thank you Bob DeMarco for all you do! ~ Lark E. Kirkwood
The Best Alzheimers Caregiver Tool of Them All, Harvey.
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8 Rules for New Caregivers
1. Start with a candid conversation. Talk with your parents about how you will be helping them to meet their needs. Unless they are severely incapacitated, they 
should continue to make their own decisions and remain a central part of all discussions about their care. Encourage them to articulate their concerns: Most likely, your parents are worried about becoming a burden and losing control of their lives. Have an open conversation about what role your parents want you to play. Establish limits so they don’t form unrealistic expectations.
2. Set your priorities. Make a list of what needs to get done and how you plan to do it. An organized approach puts you in control, reduces stress and ensures that your parents get the assistance they need. Be sure to create backup plans, and ask others to serve as reinforcements if necessary. Write down your plans and schedules, and give a copy to all involved family members. Consider using an online scheduling tool such as Lotsa Helping Hands to organize and keep track of who’s doing what, when.
4. Don’t be afraid to delegate. Ask a friend to pick up groceries or get books from the library, a neighbor’s child to adopt your parent as a grandparent, or a local teenager to help with yard work for a manageable fee. Investigate whether a civic group can provide free home repair or transportation services. Ask the newspaper carrier, a barber or an apartment superintendent to keep an eye out for your parents and to call you if anything seems wrong.
5. Offer alternatives. With family members, don’t accept excuses for not helping without offering alternatives. A sibling who lives far away, for example, can help with paying bills, contacting doctors’ offices or seeking support from local agencies. Siblings who have young children can cook meals or bring kids along for visits and outings.
6. Hold family meetings. Schedule them regularly, and bring in distant family by phone. Choose a neutral party to moderate if necessary. Draw up a clear agenda for each meeting, and agree on rules of conduct — for instance, don’t interrupt, stick to time limits, avoid argument and focus the discussion on how to care for your parents. If meetings tend to be contentious, consider hiring a geriatric care manager to run the meeting.
7. Involve your children. When you have parents and children who need your time and attention, you may feel pulled from both sides. Be honest with your children about the situation, and listen to their concerns. Encourage their questions, and answer them thoroughly. Carve out time for fun activities, and request your children’s help. Teenagers can drive Grandma to the store, and even a toddler can make her feel loved.
8. Talk to your spouse. Have a discussion with your partner about your caregiving responsibilities.What role do you expect him or her to play? Suggest specific ways your spouse can help, and show appreciation for his or her efforts. Recognize that your responsibilities affect your spouse, and encourage him or her to talk about any frustrations. Your relationship is a priority — keep it that way.
Your To-Do List
Determine housing options and preferences: With your parents, discuss whether they want to continue to care for their home or whether they have considered living elsewhere. Depending on their health and well-being, they can either stay in their home with some changes and additional help or consider other options such as an assisted living residence or a continuing care retirement community.
Research helpful services: Consider home care, adult day services, meal delivery and help with everyday activities such as preparing meals and doing laundry.
Learn medical history: Ask your parents about any medical conditions or health problems and get a list of their doctors and medications. If your parents are unclear about the details, ask if you can go with them on their next visit to the doctor.
Assemble contact list: Gather names and contact information for those in your parents’ personal support system. This should include close relatives and friends, neighbors, friends from their place of worship, clergy, housing managers or apartment front-desk staff, and even the local pharmacist.
Create a financial profile: While this information may be difficult to obtain, it is critical to have. Make a list of income sources such as Social Security and pensions, monthly and yearly income and expenses, bank accounts and investments, and a statement of net worth.
Review legal needs: Work with your parents to determine what relevant legal documents they have or want to have (wills, advance directives such as living wills, health care proxy forms, trusts and powers of attorney). Locate important documents, including their birth certificates, deed to home and insurance policies, and find out if they are up to date and express their current wishes.
Make a list of important accounts: Include Social Security numbers, bank accounts, credit cards, health and life insurance policies, and driver’s licenses.
Related articles
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Reblog: November is National Alzheimer’s Disease Awareness Month
Each year, November is dedicated as National Alzheimer’s Disease Awareness Month. It is an especially significant time for me to reflect on how this disease has changed my life. Anyone who has witnessed a loved one struggle and eventually succumb to dementia is forever changed by this gut-wrenching, heartbreaking, and incurable disease. By its very nature, Alzheimer’s will destroy you as it claims your loved one. It will chew you up and spit you out as you stand by, helpless to stop the progression and inevitable outcome.
The key to emerging from the devastation for me was to find acceptance by determining what I have learned from Alzheimer’s, and then to use that knowledge wisely, both to make me a better person and to help others when possible. I don’t wish Alzheimer’s on anyone, but I do continue to hope that what people find beyond the finality of Alzheimer’s will help them see more clearly and live more purposefully. This is what I have gained from my mother’s journey through Alzheimer’s disease.
Following are a few of the numerous events to be held in conjunction with National Alzheimer’s Disease Awareness Month.
October 31, 2011: Loving and Living with Alzheimer’s Disease
A photography exhibition recognizing the contributions of Alzheimer’s patients and their families will be open for public viewing from 9 to 10:30 a.m. in the Russell Senate Rotunda, Capitol Visitor Center, Washington D.C. The photographs, taken by renowned photographer Judith Fox, chronicle her husband’s journey with the disease and provide a rare insight into caring for a loved one with Alzheimer’s. Registration is required, see link.
November 13, 2011: National Commemorative Candling Lighting
To honor those who have been lost to the disease or currently live with the disease. I will light a candle in memory of my mother, and pray for all those who have fallen to this disease, as well as all those who have been affected by it – caregivers, family, and friends. Click on link to find a local ceremony near you.
November 15, 2011: National Memory Screening Day
If you suspect cognitive impairment, either for yourself or a loved one, early detection is key to pinpoint the exact problem and offer solutions and options as possible. Do it for yourself or a loved one if you suspect Alzheimer’s disease. Click on the link to find a memory screening in your community.
Alzheimer’s is the sixth leading cause of death in the United States and an epidemic is predicted as baby boomers age over the next twenty years. November reminds us all to be aware . . . . . and to learn more . . . . we must find a cure.
Lark E. Kirkwood
Elder Advocates 