o My 1st recommendation in dealing with a family member is to make sure to get a proper diagnosis. My Dad thought my mom had dementia like her mother and so did nothing. We nearly lost her to a benign, operable brain tumor as a result.
o Because we are hospice, unless they have other health problems, we are almost always dealing with patients in advanced stages of dementia.
If they are in the earlier stages, they may be very quiet for fear of saying something wrong, so encourage them by truly listening, addressing them directly and not correcting them.
o Remember that they are always scared. They are always frustrated. It may come out as anger or crankiness, but they’re just like scared little children wanting to be treated as adults.
o WE must be flexible. We must constantly adapt to where their abilities are at that week or that day or that moment. Don’t ask them to do anything that will add to their sense of failure. Give them chances to be successful at something in their lives.
o Though much has been lost, much remains. Focus on what is left, not what is gone. Help them find joy in every little achievement or victory. Celebrate with them. Praise them.
o Agitation-
§ Prevent it by being in their world instead of correcting or “orienting” them. Instead of “Your mom died years ago” try “Tell me about your mom.”
After all, who is to say they didn’t just see and talk to her? It could be nearing-death awareness.
§ Prevent it by not trying to reason with someone who has lost the ability to reason- redirect- i.e. instead of “you can’t go home with me”, try “let’s walk down to the end of the hall and see if John is there.”
§ Never tell them NO. Find a positive way to say everything. Instead of “No! Don’t eat toothpaste!” try “Ewww. Toothpaste will make your stomach hurt. Trying spitting it in the sink after you brush.
- Instead of telling them that mom won't be picking them up, try my sister's method by saying,"Your mom will be here to get you, but you’ve already paid for lunch, so you might as well stay till then." Repeat for dinner, then start again the next day. It's called a therapeutic fib.
§ Give them something to fiddle with such as a koosh ball.
o I remember when I went to meet a new dementia patient. First we spent some time with his wife getting to know the two of them. When she introduced us to him, he looked at her and said, "You aren't going to give them any of my good cigars, are you?" Well, we knew he'd never been a smoker and it reinforced for me the concept of treating them like who they were, not who they've become.
§ Find out who they used to be by looking for pictures and clues- treat them as that person.
§ When my Grandmother's dementia reached a point that she had to be put into a care center for her own safety, my sister framed a lovely picture of her from her glamour days and hung a poem with the picture reminding the nurses to look deeper and treat her as the person she'd been.
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| What do you see? An old lady or a young woman? |
Enriching Failure-Free Activities:
o Don’t ask if they want to do something. Just begin “playing” or “working” yourself and see if they won’t join you.
o Do activities that can be set up quickly. Don’t keep the patient waiting.
o They often feel useless or like a burden. If you can create activities that make them feel productive, you will improve their quality of life!
§ Raking-go ahead- throw some in the air! They may not remember the joys of raking, or maybe it will trigger fond childhood memories. If they are receptive to it, maybe you will find yourselves throwing them at each other!
§ Polishing
§ Stirring
§ Folding towels
§ Sorting silverware after the drawer has been cleaned- maybe it will need a weekly cleaning!
§ Bring your desk drawer contents- sort pens, pencils and crayons and wrap them up in bands- thank them for helping you!
§ Socks- bring a variety of easy to match socks
o The Bean Pot (scooping & sorting)
§ They love to sift with their hands and manipulate, so hide poker chips inside a tub of dry beans.
§ Supervise them and remind them it’s not for eating!
§ Create templates for them to place the chips onto by color or make it simpler by having them place them on a holiday shape
§ Demo games if need be.
· Be flexible - you may have to leave part of the chip showing.
· Hide a treat like a sugar free mint patty on the bottom
· Reverse the game if they are still into it.
· Pose math questions if capable. “How many chips are still missing?” “Did we find all the red? Let’s count.”
§ “Spill” chips and let them help you sort and clean up
o Puzzles
§ Pictures cut from magazines geared toward that particular patient.
§ Cut some a little harder, and some very simply.
§ If they can’t put them together, try using a template.
§ If that is too much, you put it together one at a time and encourage them to tell you what is happening in the picture as it comes together. Be prepared to be entertained!
o The Bag
§ Put only one object in at a time if necessary into a bag and have them put their hand inside and guess what the object is.
§ If they can’t guess what the objects are that day, simply let them pull them out and discuss them.
o Music!
§ I remember Maude whose sister was on a different hall of the same care center. I offered to take her down to see her, but she wasn't interested in that or anything else. I started to rub her back and sing Amazing Grace and suddenly she wanted to see her afterall. I believe there was some memory of the far past triggered by that song.
§ Collect lyrics of songs of their era, or hymns of their religion. They are starting to lose their grasp on those old lyrics, and will be delighted to see them in print. Keep it very simple. Even the title of the song at the top of the page can confuse them as they start by singing the title. You may want to put it at the bottom of the page or sideways in the margin.
o Making scents of the Past-
§ Place various oils and flavorings on a cotton balls
§ Ask if they can identify the scent
§ Feel them out to see what memories each scent triggers. This will lead into reminiscing.
o Reminiscing-
§ A very calming activity and one helpful for a good death. It aides their rapidly deteriorating sense of identity.
§ As they reminisce, they do a life review, they reflect and see that their life had meaning and purpose and value. It gives them an opportunity to celebrate their life and know they will be remembered.
§ It also stimulates memory function.
§ Stick to more distant past. They can’t tell you how many children they have, but they can give you rich details of standing on a soap box and brushing mom’s long red hair when they were young.
o Use your imagination. Many activities normally suited for children, can be adapted and made “grown up”. Have you played with Silly Putty lately? Play do? I watch my teens and see what they play with when they think nobody is looking.
§ Remember, the good news is that you can use and re-use these activities over and over and the patient won’t realize it!
o Pay some attention to the caregiver and his/her needs. 30% of caregivers die before the people they are caring for do. How can you help them carry their burden?
You may wonder if it’s worth it. It is! Giving the patient a few moments of joy or satisfaction may make the rest of the day better for the whole family. They may forget what you did or said, but not how you made them feel. That will stay with them.
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