The person with dementia may or may not be aware of his or her condition at this point. The world is simply very confusing and very disorienting.
Emotions run high
At this stage in the disease, it seems like nothing is reliable. For the person with dementia, this may bring on paranoia. He or she may put something away and have no memory of having done so. When the object cannot be found, the only conclusion that makes sense is that it was stolen.
When the reasoning part of our brain can no longer function, we all fall back on instinct. This can be very wearing for the family members caring for a person with this level of memory loss.
At this stage, the person with dementia may become a danger to self and others. For example, he or she may not recognize an emergency. He or she may not know what to do or who to call. Something as “simple” as using the phone may now be a lost art.
Driving is no longer safe at this stage. And cooking may be a fire risk if the person forgets and leaves the stove on.
The ability to live independently is questionable.
Life can still be fun
Although memory and logical thinking are impaired, it is important to remember that your family member can still enjoy life. Activities just need to be simplified. They need to be broken down into single-step processes. If you focus on what’s still there, rather than what’s gone, you will see opportunities for joy. For instance, sense of humor may be much the same. And if you can be tolerant of repeated stories, the person with dementia can get great pleasure out of revisiting the past.
Routines are important. Your family member will still want to be involved in life. He or she may be able to do things out of habit or long-term memory. Sticking to routines, therefore, is very comforting. As much as possible, do things at the same time in the same way each day.
Reduce clutter, noise, and stimulus. With memory failing, much of life seems “new.” But this can be tiring. Having to process lots of information at once can be overwhelming. For instance, taking your relative to a boisterous family gathering might not go over well. Instead, strive for calm, unhurried situations. Your loved one will feel much less stressed if things are kept simple.
Emotional sensitivity is high. People with dementia are very perceptive emotionally. They may not be able to follow the words in a conversation, but they “read” tone of voice and body language. In a tense situation, your relative will become tense. If he or she is treated like a child, your family member will likely become indignant. Just because the mental processes do not work well does not mean that a person has lost the memory of being respected, or of what a respectful or disrespectful tone of voice sounds like. Without memory or reasoning, your family member is relying on instinct to get through the day. He or she will seek basic feelings of safety and connection.
Do not insist that your relative try harder. Forgetting is not about laziness or lack of practice. It’s the result of the disease that is causing the dementia. Your family member’s version of events is very real to him or her. Discounting it or trying to prove their version never happened will only build anger and mistrust. Instead, accept that your relative sees things the way he or she does and work around it as best you can.
Memory cards can help with anxiety and caregiver frustration. People with dementia often get anxious and will worry about a particular issue. They will ask the same question over and over. No matter how often they hear the answer, they don’t remember it, so they ask again. This can wear down the patience of a saint. Research has shown that if you write the answer to a question on a piece of paper, such as an index card, and make a point of putting the memory card somewhere special (a purse or on the refrigerator door), people with dementia can often remember to go look for the answer. At the least, when they ask their question, you can remind them that the answer is on the card and where they should look. You are spared answering the same question over and over, and they are empowered to get relief from their worries.
Social inhibitions are gone. Your relative may do things that are very natural but cause others embarrassment. For instance, your mom may take off her clothes if she is hot. Your dad may comment that someone is ugly or has bad breath. Families report that coping with embarrassing behaviors is one of the more stressful aspects of caring for a relative with dementia. Look for clues or triggers that have caused past incidents. This can help you foresee, and prevent, a future event or outburst. Explaining to others that your relative has dementia can also help ease the embarrassment. Once people understand, they can be very compassionate. Keeping a sense of humor never hurts.
Getting lost. This is the stage when your family member may still have enough physical strength to walk long distances, but lacks the ability to remember how to get home. If you have not yet registered your relative for the Safe Return program, it is wise to do so now. This program provides your loved one with a bracelet that identifies him or her as a person with dementia and includes contact information. It also helps law enforcement personnel identify and find your relative if he or she should wander away. This may be time to put locks on doors or even install an alarm so your relative cannot leave the house without alerting whoever else is living there.
Bathing is an issue. Bathrooms are cold. Water is noisy. The tub may be slippery. Soaping down and shampooing hair is actually a complicated process. If your family member is a modest person, he or she may feel uncomfortable having help with bathing, even from a spouse. Heat the bathroom first before bathing. Run the bath before your relative comes into the room. Install grab bars and nonskid mats and use a bath bench to help your family member feel less fearful of falling. Have bathtime occur at the same time of day. Mornings are often best when the person you care for is less fatigued. Try rinse-free soap. And remember, sponge baths in the bedroom are often an easier, and equally effective alternative to baths and showers.
Nighttime restlessness. About 20% of persons in the middle stage become agitated or restless at night. Restless behavior may start in the late afternoon as the sun goes down and extend until the wee hours. There are many theories why this occurs, but no one knows for sure. The best remedies are to have a physically active day and discourage an afternoon nap.Reducing or eliminating sugar and caffeine late in the day can ease restlessness. Turning on lights around 3:00 p.m. and leaving them on low throughout the night may help. Some people find closing the blinds or curtains at 3:00 is also helpful. If nighttime restlessness persists, talk to the doctor. As with any disturbing behavior, some other factor may be causing discomfort or anxiety.
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Dad has dementia and I didn't know how burned out I was. ABC Care Management was able to teach me some strategies to reduce his outbursts. Plus they found a program so I could get some time off. I can't recommend them highly enough. I got my life back!