A woman in late middle age comes to a public function with her makeup inexpertly covering a large bruise on her cheek which is turning green. Her husband had slapped her, and the woman is the type of person who would have kicked an abusive husband to the curb long ago. But now, she hasn’t, and she won’t. Her husband is suffering from Alzheimer’s disease.

A woman in early middle age at the same function uses a bandage to cover a bite mark left by her mother, a woman in the late stages of Alzheimer’s disease. The younger woman was trying to give her mother her evening dose of medicine, and the mother became convinced her daughter was trying to kill her.

These two women are victims of domestic violence – that is, the violence occurs in the home and is done by a family member. But the family members in both of these cases cannot be held criminally or morally responsible for their behavior, according to a medical expert interviewed.

According to the Alzheimer’s Association, some 5-10 percent of patients exhibit severe, aggressive behavior; up to 50 percent exhibit occasional aggression that doesn’t end in violence. Some have murdered spouses or caregivers; others have thrown objects, hit, kicked, or bitten caregivers, often a spouse or adult child. Alzheimer’s isn’t the only brain condition that can lead to aggression – brain tumors, age-related dementia of all kinds and other issues can lead to a loss of mental control that may produce aggressive behavior.

As Maine ages, and Lincoln County ages even faster, the number of people living with an Alzheimer’s or other brain or memory patient stands to increase, as does the number of people living with dementia-related domestic violence. Because the caregivers will not leave their loved one, they must be aware of what triggers an aggressive episode.

The Alzheimer’s Association and American Medical Association have developed coping strategies for caregivers to help patients, including constantly reevaluating if the patient can remain safely at home.

The organizations stress that in an emergency, caregivers should call 9-1-1.

"The public thinks Alzheimer's is a memory disease," said Dr. Ramzi Hajjar, a geriatrician who treats Alzheimer’s patients. "But there are a lot of neuropsychiatric symptoms. Alzheimer's patients often develop delusions. They think their family is stealing things from them, for example. And they get very aggressive and irritable towards their spouse, children, or caregivers.”

He stressed that families need to always remember that Alzheimer's aggression really has nothing to do with them. “It’s hard not to take it personally, but remember that it’s the disease, not the person.”

The Alzheimer’s Association recommends a few coping strategies for helping patients manage the frustration that stems from loss of short-term memory:

Label and use signs - Put signs on the bathroom door, label the cabinets with contents, and ask visitors to wear name tags. The caregiver should make sure any drugs the patient needs are in an easy-to-manage drug box with the time of day to take the pills.

Learn common triggers - Identify what causes the loved one to get upset and help to work toward a gentler transition. If he doesn’t like getting dressed in the morning, take the process more slowly. Distract him with small talk while you help him button a shirt or pull on socks.

Use logic and reason - If a patient loses an item, help them walk back what might have happened. If Mom misplaced her wedding ring, ask, “Do you take it off when you do dishes?” It might help her to find it herself, feeling more connected to the moment.

Validate their feelings - Tell them it’s OK to be frustrated, sad, or lonely. Don’t try to manage the feeling, just acknowledge it, whether it’s justified or not.

Use a gentle tone and reassuring touches - always smile, and look kind and gentle.

Stick to a regular routine - This minimizes the number of unexpected or stressful transitions. Patients on hospice care often resent the number of people who come to the house, and get thrown off by changes in personnel or hours.

Ignore the angry behavior - If distraction and support aren’t working, try to ignore the behavior. If the behavior is threatening, make sure he is unlikely to harm himself and absent yourself until he calms down, which is generally a short time.

Maintain a sense of humor - There will be good days and bad days, ups and downs. Remember it’s the disease, not the person, that is causing the behavior.

Try music or reading - Sometimes, a patient will respond to singing, or listening to a book or favorite poem.

Constantly evaluate - Learn to figure out what caused an incident. Unlike all other situations of domestic violence, this situation calls for the caregiver attempting to change how she reacts to an aggressive incident.

Above all, seek support - Serving as caregiver for a memory or Alzheimer’s patient is rewarding, but also incredibly difficult. Finding support groups, respite care, and counselors to help you cope is essential. The hospice team may have people who can help. Or visit www.alz.org for suggestions.

Mary Hanley, a community-based advocate for New Hope for Women of Rockland, also stressed seeking support. “It is easier in some ways if there is other support in the home, such as hospice,” she said. “The caregiver should stay in touch with the doctor, report all behaviors, and see if the situation is caused by medication the patient may be taking for the condition. The patient may also have treatable stress, and might be helped by a low dose of an anti-anxiety medication.”

Hanley said Alzheimer’s and other brain-memory patients often have triggers different from ones someone without the condition might face. “There is a phrase, ‘sundowning’, referring to how Alzheimer’s patients react when the sun goes down. They might have a perfectly good day, but something happens at sunset that triggers fear and anxiety. And the person who gets hurt is the one in the way when that happens.”

That is often the adult child or the husband or wife of the patient. Most other caregivers such as nursing aides and housekeepers  typically work during daylight hours. Symptoms include agitation, irritability, confusion and disorientation, and a heightened sense of suspicion and paranoia. The patient may become more demanding, see things that aren’t there, yell, pace, or lash out physically.

No one knows why sundowning occurs. Some scientists think the part of the brain that signals whether a person is awake or asleep breaks down in Alzheimer’s patients.  Caregivers report it happens more frequently when the patient is uncomfortable for some other reason – being hungry, thirsty, in pain, or mentally depressed or bored. Others think shadows in the house create anxiety as the sleep/wake cycles merge.

Sundowning can be helped by closing blinds, turning up house lights, eating a lighter meal at supper and the largest meal of the day at lunch, avoiding caffeine and alcohol, and keeping the room temperature comfortable and playing soft music. 

“But mostly, the caregiver needs to make sure he or she has support,” Hanley stressed. “You would think with our aging population in Maine, there would be plenty of places to get screened for Alzheimer’s and other brain issues, and respite support for those in the home, but it can be difficult to find.” Hanley said a memory clinic facility associated with St. Mary’s in Lewiston can perform tests and help patients and their families, but that the state needs many more of these, and will need more in the years to come. “This is a coming health crisis, and a coming domestic violence crisis with no real resolution. We are far better at finding solutions for elders who are being abused than when their caregivers are, because the caregivers remain there willingly, and thank goodness for them.”

For assistance or resources, caregivers can call New Hope for Women at 1-800-522-3304.