Sadly, there are countless ways we rob people who live with dementia of their dignity.
Here are five I’ve learned based on my personal experience:
1 ) Calling them by diminutive pet names instead of their given names
2 ) Treating them like they are little more than pieces of furniture
3 ) Forcing them to sit with nothing to do for hours on end
4 ) Neglecting their overall care and well being
5 ) Inapropriately medicating them with antipsychotic drugs
Everyone deserves to be treated with dignity regardless of race, colour, creed, gender, or disease.
These tips and thoughts are based on my personal experience, as well as my knowledge and work as a former certified PAC trainer; the quote is Teepa Snow’s. Do you believe things should change? Here’s the other side of the coin: 10 practical ways care partners can help preserve the dignity of people who live with dementia.
https://myalzheimersstory.com/2017/07/07/7-ways-to-preserve-dignity/
My Alzheimer's Story 
Well said. Always treat them with dignity, respect, kindness, love, patience, and part of the family
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Thank you and yes, exactly ❤
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Thank you for great insight. We work alongside some IF and ALF, and see great boredom, and sometimes neglect, in these facilities, We can confirm points 2,3,4, and 5. As for medication, one client had a husband placed in a facility, and in the third week his aggression was medicated excessively. Dignity, and humanity, is degraded with all these points.
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I don’t know where you worked but my experience could not be further from what you have in your 5 points. The nursing home my mum was in is obviously streets ahead of its time
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Lucky for you, lucky for her. Where are you located and what is the name of the place? Do you have a link? I would love to check it out.
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I agree with your comments, but if you have a great Activity Director this should not happened. Where I live the government checks on places with frequency to make sure those 5 points do not happen.
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Many LTCFs have no “activity director,” and are little better than warehouses. Where do you live Pam?
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I took care of a friends Mother in their home(her husband took care of her with help of a Aide during the day & I took care of her overnight) I often called her “Sweet-pea” her given name was Gloria but she went by Lorry, I was in no way demeaning her by calling her Sweet-Pea, it was a loving endearment & she laughed & lit up when I called her that. After a while her husband called her that too. She had Dementia for over 10 years but she knew her name & she knew that I loved her, we became very close in a very short period of time. I don’t see anything wrong with what I did or her husband. I can see if someone called a person something bad or if they didn’t even know their name because that would be demeaning, cruel & confusing for them.
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Thanks for your comment Donna, if Gloria liked to be called Sweat Pea, if that was her preference, and it didn’t demean her in any way, then that’s fine. There are exceptions to every rule, and everything depends on what is right for the individual. However, many people use terms of endearment in ways that infantilized, demean and patronize others. They often do so unintentionally. I hate to be called “dear,” or any other such form of endearment except by my mother. I think I deserve the right to be called what I wish to be called now and until the day I die. If you clicked on the link (https://myalzheimersstory.com/2016/01/21/50-names-not-to-call-alzheimers-me/), I think you would’ve seen that there is research that shows that many elderly people prefer that others not use terms of endearment. If it worked for you and Gloria and her husband, great. But it doesn’t work for many others. thanks again for your comment 🙂
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We call my mom dear, she had a sense of humor prior to this disease and would always say to we kids, hello dear and we are using this term of endearment with her.
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I don’t believe one person gets to make all the rules for everyone…Everyone needs to do what lovingly works for each person. The only wrong response is intentional cruelty.
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Yes. You are right. And it wasn’t my intention to “make all the rules for everyone.”
Unfortunately, I have seen lots of intentional cruelty.
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I am caring for my brother. He has early onset dementia at age 59. I try to engage him in activities and doing things with my family, but he refuses. What should I do?
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What does he want to do?
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He talks about spending time with his friends at a pub near his house, and how he misses them. but once I was able to talk with these people I realized that he is describing events that occurred 30 years ago. When the weather is good, he will go for long walks, 10 -12 miles. It scares me, because he is gone so long. But I can’t force him to stay home. He hates being here, but cannot live alone. He lived in another state for 35 years and we were called in when he ended up at the va hospital. I offer to take him anywhere he wants but he won’t go.
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Please, please, never let him walk alone. My mom is a walker and we take her for up to a mile. We have put small locks on the exterior gates of her home so it will not open. In addition, my brother in law, a fire chief, has added a sensor to all exterior doors that chime when opened. In Los Angeles where my mom lives, she has a GPS on her wrist, it looks like a watch, and if she were to get out, we call the sheriff and they activate the GPS. I am a Realtor for 35 years and am the son who is able to change my schedual. Until six months ago, I would take my mom to a matinee movie. She may not remember the movie when we leave but it gets her out and she enjoys that.I ask my mom about her childhood and growing up, about her friends and places she has travelled. Best wishes for you and your brother.
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My mom, in her early stages was refusing to do much of anything except her love for going out to eat. I believe it is very confusing for your brother as his brain is changing. This is a difficult challenge and I bless you for helping and caring. My mom is five years in and it gets tougher. Thry your best to never be angry and compliment him on everything. Getting in the shower, eating, going on a walk or remembering to go to the bathroom. I am not a saint and tell myself daily that my mom is not responsible for her actions and is confused most of the time. I feel you will have to get a male caretaker part time to shower and make lunch, take him for walks.Check with your accountant or attorney, in California, we are able to write the expense of the liscensed caregiver off from the taxes. Stay strong.
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My mom lives with me now since my dads passing in January this year. I was taking care of them both in their home for the last 2 years. I have made it a rule not to demean my mother when changing her diaper, we are not allowed to call it a diaper we refer to it as her underwear, she uses a bib but we refer to that as her apron. She is bed fast now and her speech is very limited, but her smile is still hers, her blue eyes still see me and I talk to her as I did when she could respond. When I bathe her or run lotion on her I channel my love for her through my hands and with a smile. I have had no training and learned what I know through reading and watching videos like Teepa Snow’s, I’m thankful someone puts this kind of information out there for those of us who take care of someone with Alzheimer’s dementia. Thank you.
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“…I channel my love for her through my hands and with a smile.” Thanks Jana for sharing these beautiful and intimate details of the care you give to your mother. Clearly you are an angel, and you will reap many blessings as I’m sure you already are from what you are doing. Thank YOU.
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Jana that was a lovrly response. My own dear Mum was in the same position. Broke my heart but i never wavered in her care either. God bless you and your beautiful Mum.
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I have tried to get my husband Bob in the shower for at least 2 months. He has a seat bench in the tub and a heavy grab bar to hold onto. When I ask him if he will be having a shower today, his usual answer is tomorrow, but that does not happen. Does anyone have any suggestions for me please? Thank you.
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Try first thing in morning before getting dressed. Instead of asking say, “before we put this alfit on we need to wash up. It will be quick and painless.” You have to look for the “opportunities for care” (when there will be less struggle to get tasks done.) Be sure to protect his privacy by using an extra towel to cover parts not being washed at that moment. And of course until you can get him bathed allow him to spot clean or bird bath doing most himself with your assistance.
I recommend professional caregiver for bathing if available.
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Hi, I completely understand how difficult it can be. Perhaps try sitting talking about memories you shared & enjoying some time together. Don’t tell your husband he’s going for a shower, just take his hand & tell him to go with you. Keep talking & see how that goes. XxX
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My lovely mom had an aversion to a shower, it is common with Alzheimer’s. Calmly talk to your husband, if this does not work, I hope that you are able to afford a male caregiver for your husband. We have a lovely lady for my mom, it took about five caregivers until we found the right one. A note, check with your accountant or attorney, in VA, if you use a liscensed agency, you must pay but it is tax deductable.
I wish you and your husband all of the best.
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