Caregivers for loved ones with Alzheimer's or other dementia-related disease are often the ones who suffer the most. Alzheimer's victims often undergo a personality change. Quiet, refined individuals may exhibit behaviors such as hitting, yelling, having delusions or being suspicious of other family members; behaviors that are completely opposite of their former selves. The ironic twist of fate is that they don't realize how different and difficult their behavior has become.
They may act out while out at a restaurant or other public event, refuse to take medications or verbally attack whomever happens to be in the same room, which is often the spouse or family member who is taking care of them. "These behaviors can range from screaming, cursing or shouting to physical aggression," explained Ehtesham Syed, MD, psychiatrist with the Institute for Neuropsychiatry and Medical Director of Elder Care at Lake Charles Memorial Hospital. "They can be triggered by trying to bathe them, or giving them medications. The time of day can also bring aggression or depression. Dusk and dawn tend to be times when behavioral changes occur.
Caregivers who are faced with these tense situations day in and day out are prone to frustration at the very least, and often experience depression. "They are trying to care for their mother or father, which is difficult in itself; and then they see their parent act in a bizarre way, and in a potentially dangerous situation. It can be too much to handle," said Dr. Syed. While the underlying cause for the odd behavior is Alzheimer's disease, that doesn't erase the feelings of betrayal, inadequacy and frustration that occur regularly for caregivers.
One tactic for reducing conflict is to choose your battles, according to Dr. Syed, and be prepared to get into their world to reduce conflict. "If mom is convinced that Aunt Rose is coming by to visit, even though Aunt Rose has been dead for 18 years, it's alright to allow her to think that. Confronting her with the truth probably won't convince her, and it could agitate her, causing behavior problems." If dad wants to wear two sweaters at the same time, and doing so wouldn't cause him to overheat, then let him. The point is to not contradict them on issues that aren't causing physical harm or endangerment to themselves or others. "Getting into their world and going along with their thoughts will reduce the stress level quite a bit," said Dr. Syed.
"It's important to remember that you can't reason with someone who has Alzheimer's or dementia. They will not see the situation in a rational manner, like they could before the disease. They are essentially another person. Constantly trying to change their mind or explaining away their ideas will only cause stress for the caregiver. The person with Alzheimer's won't get stressed out, they'll get mad," he said.
Accepting the disease, and working with it instead of against it will ease difficult situations. Memory loss is one of the most common symptoms of Alzheimer's. You can use that in your favor at times. An altercation that occurred in the morning will likely be forgotten within an hour, giving you a clean slate with which to start fresh. They won't harbor grudges, because they usually forget the fights quickly.
Redirecting your loved one to subjects or activities that bring them joy is another powerful tool. You may find that they enjoy talking about their fishing days, or gardening. "Memory remnants of these pastimes usually survive in their minds, even in advanced dementia," said Dr. Syed. If you find that to be the case, bring up these topics during stressful times and see if it helps to calm them down.
When your loved one is having a bad day and nothing you're doing seems to be working, remind yourself that it's a disease, not a personal attack. "We don't blame someone for having arthritis, for instance. We accept their limitations and help them if they are having a difficulty. Try to remember that this is a disease of the brain, and there's no reason to take offense at most of these behaviors," advised Dr. Syed.
He cautioned that there are times in rare situations that the caregiver may be in physical danger, such as, if the person with dementia is stronger than the caregiver, and tends to have violent episodes. "Sometimes, redirecting or toning down confrontation just doesn't work. In cases like that, it may be best to consider a residence that focuses on dementia care," said Dr. Syed. "Safety should be top priority. If caring for your loved one at home puts you in physical danger, then an alternative must be considered."
The stress of caregiving often dims the quality of life for the caregiver. Keeping watch to avoid burnout requires diligence. Typical signs of caregiver stress include:
- feeling sad or moody
- feeling as though you have no time to yourself
- having low energy level
- losing interest in hobbies
- feeling angry at the person you are caring for
- having trouble sleeping
- crying more often
These signs usually indicate that personal time is long overdue. "Just because you are a caregiver doesn't mean you have to do that job 24 hours a day, 7 days a week. If you don't take care of yourself and stay mentally and physically sharp, you won't be able to help anyone else," Dr. Syed said. He suggested delegating some responsibilities to willing family members or friends, looking for help outside of the home, and knowing that it's permissible to pursue your own interests and hobbies.