Family Caregivers Communication Class — The Language of Dementia, Part 1
Many of our aging parents (or Golden Oldies as I prefer to call them) will eventually develop some type of memory loss. It usually starts as the forgetfulness we have come to expect with normal aging, but then it may progress to dementia or Alzheimer’s disease (AD for short, which is the most common type of dementia). I’ve witnessed the full progression of memory loss with my mom as she has lived through the stages of Alzheimer’s disease so my perspective is that of a family caregiver for an aging parent with AD.
We Start by Changing Our Mindset
If you keep the following things in mind, it will help in the ways you think about and communicate with your aging parents:
- Our aging parents’ memory loss is a disability. Asking them to remember is like asking a blind person to read, or a person confined to a wheelchair to walk.
- While what they do may seem crazy to us, it isn’t. They do or say normal things for a memory-impaired person. For example, they don’t hide the house keys, they put them in a safe place (in their point of view) and then forget where that is. If they were deliberately trying to exasperate us, they would have a different diagnosis.
- People with memory loss are scared all the time. As a result of the fear, they may become passive, uncooperative, hostile, angry, agitated, verbally abusive or physically combative — or all of the above at different stages of AD. As a result of our understanding and use of the language of dementia, we can alleviate many of their fears and resulting behaviors.
- Put yourself in their place and raise your level of patience, generosity and graciousness.
- We can’t control memory loss, only our reaction to it.
It’s not the person with the memory loss that learns a new language. It is you and I, their loved ones and caregivers, who have to do so in order to maintain their dignity and quality of life. In the coming lessons, I will cover some do’s and don’ts for communicating with our AD care recipients through the language of dementia.
Have you changed your mindset by being a caregiver for an aging parent with memory loss?
Can you add more ideas to the attitude adjustments above?
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Outside Resource:
Compassionate Communication with the Memory Impaired — Liz Ayres
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So true: “We can’t control memory loss, only our reaction to it.”
It’s a hard adjustment to make in a relationship with a parent, and it’s hard not to think they are being passive aggressive or something, but it really is a huge blind spot in their reality.
Hi Lori,
Yes, it is an extremely hard adjustment to make, and especially so if the children have had a difficult relationship with their parent(s)over the years. In that case I can see why adult children could easily think their parents are being passive aggressive on purpose. That is a great description “a huge blind spot in their reality.” Thanks for sharing.
Linda,
This is an amazing article. This problem is key with caring for aging parents, or any elders. I care for elders in my home off and on. It is very difficult not to get trapped in a bad mindset, even for me and I have decades of experience and training. So I can imagine family members are really having a hard time. Through the years I have heard many stories.
One thing that really helps–you must see yourself as your Elder’s “memory assistant”. In this way you can easily remind yourself that your Elder is not playing games with you, that your Elder truly relies on you to be there and do the remembering. I think this helps with the relationship between the caregiver and the Elder, too. It keeps the Elder from tending to be paranoid and distrustful, which can start a whole snowball of behaviors from both parties.
Keep up the good work. I really enjoyed this article, as always.
Valarie
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Linda,
Great post. One of the things I always try and attempt to get families who are caring for someone with AD is to find out as much as you can about the disease. A great start is invite them to a family support group. Many times this opens up the discussion and allows them to bring up questions and feelings they are having to other families that are dealing with the exact thing.
Gary
Hi Valarie,
“Memory assistant” — what a great choice of words and perspective on our role with our aging parents! I love it!! Thanks for your kind words and support, here and in the larger eldercare world, too.
Hi Gary,
Welcome to TLeC! I am a huge proponent of support groups for almost any situation, and definitely for AD. There is a link in the right sidebar under “Eldercare Resources” for the Alzheimer’s Association web site where people can locate their local chapters and support groups closest to them. Thanks for the excellent suggestion! Education also helps reduce our fears.
I have just come out of an eight year long care giving to my wife who had dementia. It was not the total kind but bad enough to make her completely depend on me for her social graces.
I quite enjoyed the post for academic interest now.
Hi rummuser,
Thank you for your attention to this post. I’m sure you were an excellent caregiver for your wife. Maybe this information will be worthwhile to share with other friends or relatives in the future. We never know where our paths will take us.
[...] — The Language of Dementia, Part 2 March 23rd, 2009 This is Part 2 in a series. Please click here to read Part 1 which contains the background ideas these lessons are built [...]
My father is in the later of the 3rd stage. He is losing his speech, forgettin where the bathroom is, he doesn’t know me anymore, or the rest of the family. My mom is exhausted. He has started fires in the house. We recently talked about nursing homes. I told her that if she makes herself sick tryin to do this, and ends up in the hospital, he’s going to end up in a nursing home anyway. I go up every other weekend. My sister goes everyday, as she lives there. But she doesn’t have the patience for him. He babbles all the time, but I just listen and when he’s wandering and getting into things, I try to redirect him. My mom says he “goes on the war path” occasionally. She is not in the best of health by any means, and really needs to get information on the nursing home. I know she can’t handle him anymore.
Hi stingynina,
Welcome to TLeC! I’m sorry that I couldn’t reply sooner to your challenges.
It sounds like you have a clear picture of the issues and ongoing stress your family is under. I suggest that you immediately call the 24/7 Hotline for the Alzheimer’s Association at 800-272-3900 (they will really answer day or night, any time!) and ask for some assistance for your dad, mom and entire family. It sounds like your mom could be experiencing caregiver burnout and needs some respite. Tell them exactly what you wrote me and they will help you connect with resources in your own area. They are an organization dedicated to helping families like yours, not just the loved one with AD, but the caregivers, too.
Please let me know how it turns out via the contact link at the top of my blog. You and your family are doing a great job of caring for your dad, but some additional help and/or resources may make it less stressful on all of you. Good luck and keep me posted.
[...] Just as spring blossoms are treasured, so are the words that others take the time to share about caregiving. Linda Abbit published Family Caregivers Communication Class – The Language of Dementia, Part 1 . [...]
[...] The Language of Dementia, Part 3 April 20th, 2009 This is Part 3 in a 3-part series. Please click here to read Part 1 which contains the background ideas these lessons are built on. Also read my brief “Word of [...]