Tips

http://www.dreamstime.com/-image27138149Dementia caregiving is challenging in particular ways that other kinds of caregiving is not. This page is devoted to sharing tips that will help you with your loved one. Many of the tips make sense, some are counterintuitive. But if you try most of them at one point or another, you may find they help.

Physical Environment
It is important to make sure that your loved one is in a well-lighted room at all times (maybe even bedtime if they get very confused at night). People with dementia have an array of visual issues that make interacting with their surroundings difficult. These difficulties can interfere with their ability to help you help them. For example: they have trouble detecting motion, which is why approaching them from the front is vital (see next section), they have difficulties perceiving depth, accounting for high-stepping over dark rugs which they interpret to be ‘holes’. They also have a hard time with contrasts, which is why rugs the same color as the floor should be avoided (no rugs should be on floors if possible), and they have (more than most older people) trouble seeing colors in the blue-violet end of the color spectrum. The failure to detect contrast is also responsible for some difficulties eating: if she cannot see the cooked carrots on the orange colored plate, she won’t eat them. So a well-lit room, free of rugs, with solid colors on sofas, walls and chairs is optimal. 

Skills
If your loved one is upset try not to help dress, shower, stand or do anything else until she is feeling better and calmer. It will only make things worse. If she is agitated she won’t cooperate and it is best to try getting her cooperation. 

Don’t interrupt if they are busy
Unless there is real urgency, let them complete what they are doing before insisting on helping them dress, shower, bathe, etc. You are more likely to get their cooperation and help. If you hurry them or even feel hurried yourself, they will sense it and become anxious themselves. When my mom’s first caregiver demonstrated anxiety (loud talking on the phone, hurrying mom along) my mom became very worried and would ask me, “Is everything alright? Did I do something wrong?”. She blamed herself for her caregiver’s impatience (part of how I knew I needed to find another companion). If you can exhibit patience not only in waiting for them to finish what they are doing, but also in doing what you have to (bathing, dressing) it will give them a feeling of calm.

Always approach from the front
Get the attention of your loved one, by establishing eye contact and then come towards them from the front. Once you are there, touch their arm or shoulder or in some way gently coax them along to do what needs to be done. This way they are not startled (see Aggression and Anger on Behaviors Tab) and won’t get alarmed or angry.

http://www.dreamstime.com/-image25448828Accepting their reality
If you are helping your loved one dress and suddenly she thinks you are someone else and is now embarrassed by being undressed, try to accept that and not argue about who you are. If it’s possible logistically, you can leave the room and return a few minutes later, hoping she’ll remember who you are. You might have to try that several times. If it’s not urgent perhaps the whole thing can wait:  e.g. shower, bath. 

Try Eliciting their help
Especially if you are having to lift, guide or otherwise move your loved one, it’s helpful to let them help you and to use assistive devices. Ask them to lean forward, if that is necessary. Whatever it is, if they can help you, it is better for you both. It is dangerous to you and to your loved one to lift them by their arms using only your arms. Try bending your knees and using your back and leg muscles to lift at the waist. If you can, use a transfer belt to shift them from bed to commode or wheelchair. The transfer belts will not only help you lift a person and transfer them, but you can use it to guide them to the bathroom or to another room. It offers added insurance against a fall since you use handgrips on the sides (and some have them in the back also) to direct them. 

If she could make you understand
If your loved one could really articulate what she was feeling, here’s some of what she might say to you. It would be said with all the love in the world. It would be said by someone in mid-stages of the disease, when they are most aware of all the help they need.

Body language
“Please understand that although I might not know what day it is, or who the president is, or what year, I know when you are angry, annoyed, impatient or disappointed in me. Please try to hide that, because I have a hard enough time sorting out what is happening right around me. Please pay attention to my body language. If I am slumped in my chair or looking down or staring blankly I need you to help me and distract me. When I’m picking at my clothes, especially around the waistline, i might have to use the loo. When I look sad, I probably am. Please pay attention because later on I am going to lose the ability to make normal facial expressions so you won’t have that clue any more.”

Praise 
“I need your praise more than ever. My world has collapsed around me and I often have no idea what is going on. If I am doing something right, please let me know. If I’m doing something wrong, please keep it to yourself. I won’t understand how to fix what I’m doing wrong and my attempt might frustrate us both. Please try to let me help you when I can: fold our laundry, snap beans, shell peas, whatever I can do, let me. It makes me feel helpful and important and like I’m doing my share even though I know I am not. I know that letting me help slows you down, but if time isn’t an issue, try to let me help if I can. And please try to talk to me in a friendly way, It makes me feel better about myself and about what is happening.

omanfred-original-1_scaledCorrections: Grounding in Reality: Lying
“Please don’t correct me all the time, or at all if you can help it. If you tell me it’s 2013 I’m just going to forget what you said and anyway I’m living in my past, maybe even in my early childhood. If I am distraught because I want to go home and I am already at home, try to understand that I’m searching for my parents and want to see them. If you tell me they are dead and I can understand what you are saying, I will probably become agitated and cry. If I can’t understand you, it won’t help me or you. Try to distract me or give me something to do or lie to me and tell me they are coming sometime soon. Yes, lie to me. It is difficult for many people to lie. Especially if you are religious and think it’s a sin. But it is a kindness to me to sometimes lie.

It’s not that I don’t care that something important just happened in the news. But I don’t even know where I am most of the time, so how can I talk about the news? To me it’s 1932, not 2013. Don’t ground me in your reality. I’m in my own place and time and you have to help me there. It’s not my fault. It’s my disease. 

Advocate: Doctors and Hospitalizations
You have to be my advocate. I don’t know anything about my pills or when to take them or what is going on. You have to speak for me when we go to the doctor. Whenever I realize I’m confused, I try to hide it or cover it up. Just don’t embarrass me if possible. And if I have to go to the hospital, please make certain everyone there knows I have a memory problem. If possible, stay with me while I’m there. I’m totally lost in a new place with new people asking me questions I cannot answer. 

Getting Help
You cannot do this job alone. I know you and feel best when you are around me, but sometimes you need a break, or lots of breaks and it’s good for us both if you take them. I don’t like seeing my caregiver stressed or unhappy. If you don’t take care of you, you cannot take care of me. I need you to be healthy. And if you have to stop doing this and you have to put me in another place, I’ll be okay. Just come visit me whenever you can and have a meal with me. Let me know you still care in whatever way is good for you. That will be good for me.