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
“The CARD Study – Abuse of People With Dementia by Family Carers,” published online in the British Medical Journal, 23 January, 2009.
When Ed, my soul mate of 30 years, developed Alzheimer’s, I sank deeper into despair each day. I thought a lot about grief related to loved ones with dementia. How you lose them little by little, but they are still there. I was thinking about how many years the grief may last before they finally die, and then another kind of grieving begins.
Death is typically a clear starting point for grief, and it’s clear that eventually there will be more or less an end to it. But with dementia, loss comes in bits and pieces and drags on and on for many years before the loved one even dies. It is understandable why I felt overwhelmed by the prospect of so many years of grieving.
When a loved one is showing clear signs of dementia, that person begins to fade away, resulting in feelings of loss and despair. And there are so many losses over time. These may include things such as negative personality changes, not being able to have meaningful conversations, and, in many cases, the person with dementia not even recognizing loved ones.
This type of grief continues as a loved one declines little by little. It seems that every time a caregiver is able to come to terms with the person’s reduced level of functioning, they get even worse. One way to deal with these continuing losses is to learn to let go of the “previous person” and learn to love and cherish the new person just as he or she is. This process, which can be very difficult to master, must be repeated over and over as the disease advances.
My personal experience, as I describe it in Come Back Early Today was that I could reach Ed again when I began to interact with him as though he were a toddler. I took him little stuffed animals, which he absolutely loved. Then I started to play with him and the stuffed animals, and I invented other little games to play with him. We both enjoyed it immensely. My pain at losing the “old Ed” was significantly decreased as I saw how much joy I could bring to my “new Ed.”
2. Anticipatory Grief
Anticipatory grief is that which often occurs when one is expecting a person to die. It typically has the same symptoms as grief after any other death. To deal with this it can be helpful to try to shift your focus from the anticipated death of the person to trying to enjoy together the time that’s remaining. It’s important to try to think of all the ways you might be able to improve the person’s quality of remaining life.
3. Grief When the Person Finally Dies
Grief when a loved one with dementia dies can be more difficult than that for other types of death. One reason is because the caregiver has usually already been grieving the loss of the person for years. It’s difficult to endure the seemingly endless grief.
When a person with dementia dies, their loved ones typically experience the normal stages of grief — denial, anger, bargaining, depression and, finally, acceptance, although these are not always experienced in the same order and not everyone goes through each stage. Some people get stuck in one stage, which can lead to complicated grief (see below).
Research shows that 72% of people who have a loved one with dementia are actually relieved when the person dies. This can lead to incredible feelings of guilt. It’s important to realize that feeling relief when a person with dementia passes away is normal and that there’s no reason to feel guilty about it.
I was able to work through my grief after Ed’s death in part by writing a book about my 30-year relationship with him, focusing primarily on the years when he was demented. The project started out as a way to remember Ed and honor our life together. But mid-way through the process, it became meaningful to me also as an exciting creative endeavor, helping me resolve my grief.
4. Complicated Grief
Complicated grief, also referred to as unresolved grief, is that which does not lessen with time, or is so intense it significantly interferes with one’s life. It may appear as major depression, lead to substance abuse, cause thoughts of suicide or take on the symptoms of post-traumatic stress disorder. It may also become chronic grief. Surprisingly, complicated grief may also manifest itself as a complete absence of mourning. Complicated grief usually requires professional help from a physician and/or psychotherapist.
5. Moving on
Grief must be fully experienced before you can move on. You need to allow yourself time to grieve. It’s important to take good care of yourself physically and emotionally during this time. It will also help to realize that with time your pain will lessen and you will be able to move on.
At some point — when you feel you’re ready — try to begin “returning to the world.” Take up a new hobby or go back to one that lapsed while you were caring for your loved one. Spend more time with the family members and friends you may have seen less in the preceding months or years. Some people also benefit from doing volunteer work.
Much to my surprise, one day I suddenly realized that I’d completely forgotten the third anniversary of Ed’s death, which was a month earlier. That’s when I knew my grief was largely resolved.
- Is Mourning Madness? (slate.com)
- “Am I Grieving Right?” (psychologytoday.com)
- Grief Is Normal And Not A Mental Illness, Medical Journal Editors Say (huffingtonpost.com)
I thought Mom was nuts when she bought a toy parrot that repeats everything you say. This was prior to Dad’s dementia. In fact, when she would insist upon “Polly” sending me a message on our weekly phone conversations, I was more concerned about mom’s sanity at that point. But apparently I owe Mom (and Polly) a big apology.
I stumbled upon this blog post about Dotty and Harvey thanks to Lark Kirkwood’s Elder Advocates blog. What a delightful and insightful story and video. Who knew this cheap parrot toy could connect with Alzheimer’s patients better than some caregivers can?
I was blown away when I read about Dotty and Harvey because once my dad was battling dementia, Mom would still play Polly for Dad when he was depressed or agitated. She said it brightened his mood. I have a feeling it made her feel better as well.
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