Getting along when you have dementia

IMG_5118How do people, who are living with the symptoms of dementia and which is causing increasing cognitive disabilities, including memory loss, reduced cognitive abilities and changing emotions and behavioural responses, work together cohesively and without getting upset occasionally?

One of the things I hear over and over again from this supporting someone with dementia, relates to the quote I have added here: “You can’t change someone who doesn’t see an issue with their actions.”

This is incredibly pertinent in the home and professional care situation, as there really is no point arguing with someone who believes a different reality, or cannot remember saying or doing something.

The quote also relates to a more philosophical way of approaching life, as if someone is unaware something that have done or said has caused you to feel hurt (pre-dementia, this is always your choice, almost always not their fault that you have reacted that way), you would not be able to change them if they didn’t see an issue with their behaviour, actions or words.

I’ve worked as a volunteer and been on committees my whole life, in fact since before leaving high school, and there have always been times when not everyone can see eye to eye or agree with each other, or who misinterpret things, or we are not able to make themselves understood.. Families, friendships, and work is like that too. It is normal. Of course, these challenges are increased by the symptoms of cognitive impairments.

I imagine, having read hundreds of blogs and articles written by family care partners, it is almost impossible for people who are all living with a dementia to actually get along all of the time; I read and hear many stories of conflict between the person with dementia and the care partner, conflict over power, conflict caused by misunderstandings, conflict caused by the changed abilities of the person with dementia to communicate, and conflict caused by a family care partner not taking the time to find new ways to listen and communicate. This is common and seems to be normal… and it also happens in relationships where dementia is not present!

Working together in a group situation makes this even  harder, and then when we have a difference of opinion or a misunderstanding, it is easy to over react. Of course, there will be conflict between groups of people without dementia as well, it is not different for us, but perhaps more likely.

Interestingly though, most of the time, I find we are the group who has the least conflict, perhaps because we usually give each other some ‘slack’ as we understand intimately the difficulties.

I definitely subscribe to the philosophy that people with dementia are always there, and not ‘fading away’ but that we are as John Sandblom so perfectly said in 2014: We are just changing on way that you others are not”.

However we are losing capacity and will and do react and respond differently than we used to, we sometimes misinterpret, we sometimes forget, we sometimes misunderstand, and of course we sometimes feel hurt and we get angry. But we never mean to hurt each other, even in reality, when there is in reality no doubt we  often do. I am personally finding my reduced ability to understand things, to properly comprehend, is causing me more than me grief and anguish, and have no way of knowing how to change that, other than to constantly offer an olive branch to anyone I have unintentionally upset.

In particular though, if anyone has any specific advise for a particular challenge I have, and am unsure how to manage: What should I do when someone else living with dementia believes they have heard me say something, that I do not believe I said, and that I have asked others in the same conversation if they recall me saying it (and who agree with my recollection)… BUT…  We all have dementia, and we might all be wrong, and the truth could be something completely different to the two versions we believe to be true????

This is one of the big challenges for anyone engaging with any person with dementia, including those us engaging with each other!

16 thoughts on “Getting along when you have dementia

  1. Hi, Kate. Thank you for this vulnerable post. I can certainly identify with the sentiments. I think my best practices in this particular area have been:
    – value the shared relationship more than my position (pull together in same direction and not against one another);
    – repeatedly decide to accept that humans have emotions and make mistakes (there is nothing inherently negative about feeling big feelings or making mistakes);
    – apologize whenever I become aware that someone feels hurt by my words or behavior, regardless of my original intent;
    – practice forgiveness (of self and other people);
    – reflect back what I hear from the aggrieved person (“what I hear is, you felt hurt/excluded/angry when……..Did I get you? Is there more?”)
    – ask “what ideas do you have for how we can work together successfully going forward?”
    I hope some of this may be helpful to other people too.

  2. I do not have dementia so please take any “advice” I have with a grain of salt and feel free to ignore it. However, I do have experience working with people who have dementia and also loved ones in my family, so those are my limited “credentials.” With that disclaimer aside, I would simply explain what you want again without emphasizing the person’s different understanding. As you said, a person perceives what they perceive so trying to remind someone that their reality is somehow different than what they believe seems like a losing venture to me and will require lots of energy and frustration on the part of both people. I would look at it like a “re-do” and just explain again because in a way, the person is hearing what you are trying to express for the first time. This may or may not mean that they understand things in the way you intended. You can only try. Also, I might try explaining in a totally different manner. I have a disability which makes directions and aspects concerned with directions confusing so sometimes it is helpful to hear things expressed in a totally different way. Most of the time, however, I can’t rely on people to do this. I have to do it myself, so there’s that. It has been necessary when I returned to school. Sorry if this is not what you were asking for. Love reading all your posts. Thanks again, Kate!

    • Advice gratefully accepted… thanks! I did ask, and I really am delighted to have a few new idea to help with this type of thing, which pf course happens to everyone, not just people with dementia.

  3. As you rightly say Kate, all of these things are challenges for everyone, not only those who live with dementia. None of us agree all the time, and we never will. Miscommunication happens whether one lives with dementia or not. All we can do is try our best, and know that we are all only human ❤ That's my take 🙂

  4. Oh my God Kate you are so right on target. As a caregiver partner I’m aware of the fact that sometimes it takes until your part other partner is advanced enough that you really realize that the illness is there and that there is no use arguing. Also it takes time to readjust and adjust and then readjust again. When both parties in an interaction are dealing with dementia, such as an committee work, it sure is a double wammie! It may be easier than it sounds but perhaps there could be a moderator without dementia to help oversee these encounters. As ever find wishes and love across the water, Michael

    P. S. You may have noticed I am not as visible as I had been but with Gregorys being gone things have changed. But know that I will always be there to speak up on behalf of those with dementia/Alzheimer’s. By the way currently in San Francisco at the oldest and largest LGBTQ film Festival which is featuring the documentary that was made about Greg and me. We are up to approximately 30 film Festival acceptances and also have won 14 awards. I hope to be able to share the documentary with you soon!

    • Thanks dear Michael… and I have been following your incredible progress with awards and accolades for your documentary. I can barely wait to see it! Take great care, and sending hugs always xx

  5. Kate, your final observations are quite accurate. Yes, there are, in the very nature of human interactions, multiple truths, multiple realities. In my previous life as an ethnographer, I observed this phenomenon many times. All you can do is recognize it (as you have done) and, if possible, acknowledge it openly for a given situation. In so doing, you honor the other person’s reality, but move forward with your own. Hopefully (s)he will then do the same. Sometimes it’s the best you can do. It’s just reality.

  6. Thanks for this post Kate. My brief (and only hastily thought through) suggestion in response to your question would be to consider technology as a means of supporting human memory in your group work situations. Of course this may not always be practical. I’m sure you are already doing this, as am I! But the options are broadening and becoming more accessible and intuitive every day.
    Best, Craig

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