Seven years ago I was living back in rural Iowa next door to my aging grandparents. It was a very small small community and within a two block radius I had my parents, two aunts, an uncle, and a partridge in a pear tree. Actually it was a turtle dove, but that's besides the point.
My grandma Janet had always been a very joyfully simple lady whose laugh could be picked out of a crowd of a thousand Iowans. I had been working in senior care for over two years and understood the value of what we do for older adults. I was confident on what we do and how to articulate it.
I started to notice a cognitive decline in Janet in 2012. It was harder for her to concentrate, she started forgetting where she would leave things, very simple things that made me adore her all the more. I adored her, but I also knew that she was beyond what my grandfather Sam was able to handle on his own. We tried to help as much as we could, but I couldn't convince anyone in my family that dementia was real and that we need to be thinking of the future! My dad would say "That's just how she is", my grandpa Sam would say "She's always arguing with me! (p.s. Don't argue with someone with dementia and Alzheimer's, it wont get you anywhere). I began to get to my wits end in the summer of 2013. I had been actively trying to share with my family the need of a memory care community for Janet and no one would listen! I felt like a failure and no one would hear that grandma might have dementia.
I realized at that point that I had to go outside of my family in order to get people on the bus. I reached out to my local assisted living and asked for resources. Their nurse offered to come and meet with my family and Janet and give a free assessment. I jumped on the opportunity!
It was a turning point with my grandmother's care because there was an "unbiased" presence that said it was time to look at other housing options. I am glad that I had someone nearby that was able to lend their expertise. Unfortunately, Janet went to find Jesus in 2017, but we were so blessed to have those final years be ones of comfort instead of stress. Thank you!
-Luke, Grandson and Healthcare Professional
When a person with dementia asks you a question for what seems like the 29th time in a row, how do you respond?
Have you found yourself saying (or almost saying) anything like this:
Physical changes in the brain can result in a person with dementia no longer being able to remember that s/he is repeating themselves. These changes also make it difficult for a person to stop a repetitive motion such as rubbing hands together, or tapping on a table. Anxiety and tension, (byproducts of the disorientation and memory loss of dementia) can translate themselves into repetitive motions or questions which others may experience as annoying.
Whatever a person with dementia does that appears “wrong” or “inappropriate” or “unnecessary” to our brains and our way of relating to the world is actually an expression of a need. That’s why I like the phrase “behavioral expression” so much better than the term “behavior” when referring to the challenges that can arise when someone lives with dementia. “Behavior” often implies judgment, that the person is being “bad”, which encourages us to assume that if the person only tried a little harder, they could control that incessant tapping, stop asking those repeated questions, and avoid using those four letter words that they never used before! The fact is that the person could only exert control over those things if they could STOP having dementia. This is, alas, too much to ask.
We must have patience and compassion for the seriousness of a broken brain. It’s up to us whose brains are in better shape, who have better control over our actions and responses to others to take a deep breath…and focus on helping the person out with whatever need is making itself known, however it may be expressed.
A hungry person might ask “What’s for lunch?” over and over. For this person, giving them a piece of paper with the upcoming “menu” written down may satisfy the question. In addition, getting the person involved in some aspect of meal or table preparation might be an effective distraction.
If a person with dementia is in pain, they might rock, pace or otherwise move rhythmically to express their discomfort. We must be sensitive to the comfort–related needs of the person, and do what we can to alleviate them. Sometimes, giving a repetitive task like winding yarn or folding towels can be a comforting distraction for the person.
Sometimes people may be bored, craving a sense of purpose and meaning. Repetitive movement can be reflective of things the person used to enjoy doing on a regular basis. If your loved one asks you, “What do I do now?” they are in effect asking you to involve them in something that will give them a sense of pleasure, peace, or usefulness. Put something of interest in their hands. Ask them for help with a task. We all need to be of use. This does not stop when we get older or when we develop dementia. An inability to take initiative is usually part of the dementia progression. Do not assume that your loved one is beyond having interest in things that have been important to them. The person may be at a loss as to how to access or activate that interest. In that case, it falls to us to remind the person of their accomplishments and adapt past interests into activities they are able to enjoy now.
It is a good idea not to discuss plans with a person (appointments, visitors, outings) who has very short-term memory loss. Knowing an event too far ahead of time can cause extreme agitation (as well as, you guessed it, repeated questions) for a person with dementia. This tendency will vary, of course, person to person, but it is necessary to monitor and adapt to the changes as dementia progresses.
Sometimes the need expressed is an emotional one. The person may be fearful, sad, or feeling insecure. That emotion could come out as a repeated question or as a physical expression, i.e., pacing, as the person attempts to express what is inside. Listen for the emotion behind a person’s question or behavioral expression, and respond to that, i.e., “You seem worried. I’m right here if you need anything. “We will be together all day.” Putting on soothing music that the person likes and using gentle touch may provide further reassurance.
If the person seems to need a hug, tell him or her that YOU need a hug, and they will very likely oblige you with one. Then they get to feel that they are giving you something that YOU need. We all feel better when that happens!
--Marysue Moses, Ebenezer Dimensions Program Coordinator
--Information in this post is partially based on material in Coping with Behavior Change in Dementia: A Family Caregiver’s Guide, by Beth Spencer and Laurie White
Aurora Senior Living is managed by Ebenezer, Minnesota’s largest senior living operator. Ebenezer is the senior housing division of Fairview Health Services and has 100 years of experience serving older adults.
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