Dancing With Lewy Body Dementia

You carry a torch when you give others a light in the darkness of seeing, knowing and advocating for those experiencing the challenges of Living With LBD.

There are resources today we did not have with my Mom and yet there are stories of living with Dementia, by individuals in 2024, still containing words of struggling families and spouses trying to understand this "thief" taking over their loved one. They don't know what's happening, why it's happening, where to look or haven't met someone, llke me, who Advocates, reaches out through personal contact & online. One resource that has grown, developed and provides a resource for support as we walk with those we love is the Lewy Body Dementia Association. It's become a resource for me and for others who try to understand and cope with any behavior we see but do not understand. The words help to shine light on what, why, how we walk along the road, the path, the journey we started. It's so different from the corner we turned somewhere along the way of marriage, a relationship, friendship, being a daughter or son or anyone who regularly connects with a person we love but do not understand what is happening. The following is copied from an email I received and I hope acceptable to the Lewy Body Dementia Association I've copied and pasted it here for you to read.   In our support group for those living with Lewy, we often engage in enriching discussions surrounding the rollercoaster of emotions that can come with LBD. Recently, we delved into the topic of frustration and agitation, recognizing the unique challenges they pose for everyone involved. In collaboration with those who have lived experience with the disease, we created five tips for those with LBD and their care partners to keep in mind while navigating these difficult feelings. 5 Tips for Managing Moments of Frustration Think about the ‘why’ behind moments of frustration. Are there potential physical, emotional, spiritual and/or psychological factors or perceptions that are influencing these reactions? Is there something you can do to proactively get ahead of a future issue?  Ask yourself if there are accommodations that can be helpful insupporting you or should space be given in certain moments?  Try to remain as calm as possible. This can allow everyone involved the opportunity to de-escalate, even those with cognitive changes and challenges. Show appreciation when things work, rather than only reacting when things are not as effective. It can also be important to clarify what is not helpful too - being honest can lead to improved solutions. It’s important for everyone to feel loved, safe, heard, and understood. Ask how your environment could increase or reduce your frustrations. Can changes be made to reduce future frustrations? My Personal Thoughts React less. Observe more. Walking into someone's life whether into a room or into their lives requires pausing, observing, listening and learning. Gymnasts, ice skaters, dancers focus on where they're going from where they are. Dementia is another "dance" in life. Where they were and now are, requires mentally moving from one place to another. Dementia focuses on wherever the mind has stopped, rested or jumped to. Waiting. Anticipating. Forgetting. Remembering.  All can happen slowly or within a split second. Multiple changes can occur inside the person, before you see or hear an action or a statement. Be grateful for the moment without reflecting on where you hoped you would be. It is time, spent together, being with, listening to and feeling fulfilled. Follow where you are led even if the destination can't be seen or heard existing in the mind and heart of your friend, relative, parent or grand-parent. They see what they see, feel what they feel and move from moment to moment into and out of places you barely recognize before they enter another. Do not miss the present moments wishing to return to past times.  Place value in where you and they are even if it seems to be different and unknown. Love needs no common ground when what is seen and felt is your presence. Value what there is and set aside expectations and usual practices. It's the journey not the destination.  Time shared to recall at a later date. It's a gift of self and that is the most valuable of all.