It’s a treasured image: the loving grandparent with a soft smile, offering unconditional love and cookies to a bevy of grandchildren… until eventually she forgets their names and gently fades away. This scene of the aging grandparent often does happen, but sometimes there’s a dramatically different scenario that many of us may face at some point. Today, one in 10 people age 65 and older suffers from Alzheimer's dementia, and the number of new cases of Alzheimer's and other dementias is projected to soar. On top of that, an unknown number of the nearly 6 million men and women with dementia will become violent at some point. When that happens, finding care can be incredibly challenging—whether it is for a grandparent, a parent, or a spouse.
Unfortunately, when a dementia patient becomes aggressive, combative, or otherwise non-compliant, their condition crosses into mental health territory. Similar to other mental health concerns, our health system is ill-equipped to handle the challenges. Despite the fact that as many as 1 in 10 Alzheimer’s patients lashes out physically, very few people talk about this issue. Perhaps it is the stigma of mental illness. Maybe we don’t want to admit to ourselves (much less our neighbors) that the people we love could become a physical threat, but the lack of care options for combative dementia patients seems to be the “dirty little secret” of elder care.
If you assume the issue is rare, think again. Here are just a few examples, and they paint a bleak picture:
- When Randy’s wife Jean was diagnosed with dementia, he kept her condition a secret for almost two full years. He was embarrassed by the stigma of a mental health problem, but when Jean’s behavior changed, he couldn’t keep up the façade any longer. She refused to allow him to bathe her, fought him off when he tried to help her use the bathroom, and he couldn’t even coax her to bed at night. He had to get help. Sadly, Jean was just as uncooperative and aggressive with professional healthcare providers as she was with Randy. After three nights in a local nursing home, the facility called to tell him his wife would have to leave because she was “not manageable.” The next facility found her so difficult that they transferred her to a geriatric psych hospital where things got even worse. Two different memory care facilities refused her, and every time she was forced to leave another home, Randy was given a list of other facilities, a hasty “good luck!”, and little guidance.
- Mia and Jon faced similar challenges.Jon had always been the decision-maker in the family, so when it was clear he could no longer keep up with the bills or manage their money, Mia didn’t know what to do. Even when Jon’s physician confirmed the early-stage dementia diagnosis, she felt stuck. Mia asked her adult son to help her talk to Jon about the necessary changes (beginning with taking away the car keys), but when they approached him about the issue, Jon was threatened, upset, and angry. Less than a year later, Mia and Jon moved into a continuing care community, but the transition proved too stressful. Within a week he was moved to the skilled nursing unit. When he became combative, he was transferred to the psych holding unit of the local ER for 24 hours. When he was released, Mia and her son were given a list of recommended facilities, but none of them would even consider accepting Jon because of his history of aggression. Four facilities later, an elder care placement worker urged Mia to consider a board-and-care home that specializes in combative dementia. It was there, says Mia, that Jon was saved by a caregiver who understood how to calm him and was able to give him the best quality of life he could have.
- When my husband, Ed, suffered a debilitating stroke and became permanently disabled, he was only in his 50s, but we faced similar challenges. After a bad fall, Ed was placed in a medically induced coma to allow his body to heal. When he woke up, he was confused, angry, and combative. That didn’t change when he was placed in the best facility I could find—one where I knew they would not tie him to his bed. But after one violent episode, they transferred him to UCI without my permission, despite the fact that I had Power of Attorney at the time. Because there were no beds available in the psych unit, my husband was placed in the ER hallway (perhaps the worst possible place for someone suffering a psychotic break!) for more than a day. Finding any place that would accept him with that history was nearly impossible. The whole scenario was horrific.
Finding quality care for dementia patients who become non-compliant can be a nightmare for everyone involved. I wonder if the challenge lies not with the patients themselves, but with our society’s inability to accept mental illness—to give it a name, anticipate the possibility that this may become a reality in our own lives, and identify creative ways to help our aging population through the trauma and confusion of dementia.
To learn more, I recommend Esther Heerema’s article How to Respond to Combative Behavior in People with Dementia that looks at the daily challenges from the dementia patient’s point of view. She helps the reader understand what drives some of the anger and frustration that can result in combative behavior. If you do find yourself facing the challenges of caring for a combative family member, remember that dementia can take a devastating toll on caregivers. Find a local support group, join an online forum like Caring.com or the Alzheimer’s Association’s ALZconnected.com—get help wherever you can find it.
According to the Alzheimer’s Association, someone in the United States develops Alzheimer's dementia every 66 seconds. By 2050, that statistic is expected to jump to one new case every 33 seconds. By doing all we can now to help end the stigma of mental illness, perhaps we can help change the future for tomorrow’s dementia patients—ourselves and our families included—even when they become “non-manageable.”
Do you have an incapacity agreement?
To help our advisory clients anticipate dementia, we ask everyone 65 or older to sign an Incapacity Agreement. This agreement permits us to reach out to designated individuals if our client asks us to make changes to their investments or make withdrawal requests that are seriously inconsistent with their previously-stated life goals—something that we believe is an out-of-character request that could be due to physical or mental illness. Ask your advisor if he or she offers a similar agreement to help protect you and your assets in the case of age-related dementia.