Living Well With Dementia One Moment at a Time

All any of us have is the present moment. The past is gone, and the future never really arrives. We live in the now. Let's discover how we can apply this for empowerment in the world of dementia care and support.

Yes, the dementia disease can strip away a lot, like memory, reasoning, and social skills. But we don't want to give the disease more than it needs to take.  Let's not see this individual who is living with Alzheimer's or another dementia as broken or lacking.  Instead let's use their current capabilities and our perspective to create emotional wellness, in the now. When we are portals of understanding, patience, and compassion, many moments in the lives of those living with dementia and those who love and care for them, are created beautiful.

First, always remember you and your client or loved one who is living with dementia is doing the best they can.

All that is left, in this moment, is love and compassion. There is so much that can blossom & thrive in this precious space.

Instead of taking something personally, give grace.

Instead of harking back on what used to be or fearing the future, find the potential for good that resides in the moment.

Instead of wanting something that's no longer possible, discover, facilitate, and celebrate what is.

Living With Dementia: A Day With Sally

I recall a moment when I was working as the director of a memory care community which afforded me the opportunity to get to know 125 individuals who were living with dementia, and their families/loved ones. Some of the most bountiful experiences resided within that community and within those relationships and I believe it is because we were all committed to creating well-being, in each moment. I'd love to share this story.

One day one of the residents, who I will call Sally, was having a tough day. As we know, we all have bad days, and this was one for her. Sally was exceptionally anxious and angry, sharing that emotion with whoever she encountered. Unable to discover a specific trigger, I chalked it up to just a tough day. Again, we all have these shifts in energy that can occur without a clear cause.

I felt it important to help Sally to move through this emotional state and to provide the care team with some much-needed space for rebuilding their reserve of patience and understanding. I knew Sally loved gardening, so I invited her to join me on a little outing to a local nursery. Reluctantly and with much gentle encouragement needed, Sally finally agreed and off we went.

Her agitated emotional state came along for the ride but began to shed as we engaged together with the beautiful plants and flowers in the garden nursery. After a few moments in this space, Sally softened. I could feel her focus shifting on what she loved and hence her energy shifted with it. We had a wonderful time together.

I brought her back to the memory care community, the beautiful, selected plant in hand, and we parted with a hug. Sally wanted a nap and I suspect it may have been needed as a continued release of some of the tense, agitated energy still held from earlier in the day.

A couple hours later I walked into Sally’s room to wake her for dinner. I expected we would reconvene where we left off but due to Sally's dementia and her memory challenges, this wasn't possible. She awoke and looked at me blankly, as if our history had simply passed through. “That's ok,” I reminded myself. “Sally is doing the best she can, and I can't take her forgetting personally.”

While Sally couldn't recall our experience together, that I held in the forefront of my mind, Sally could connect with my heart. She sat up, rubbed her eyes, and said, “Who are you?” I told her my name, extended my hand, and began helping her to get ready for supper. It was a couple moments later when she began to tell me a story. Sally looked intently at me, with a soft smile and said, “I had the most wonderful day. My best friend came to pick me up and we went and bought this flower together. Want to see it?”

Oh my. What a beautiful moment for both of us.

We can't expect someone with dementia to remember everything. And while not easy, we can't take it personally when they forget “us.” They are doing the best they can in the moment, and what we come to learn is the emotion of the experience we shared together often isn't completely lost. But even if it were, we must find value in knowing that moment was still special. When we join them where they are, with an open, understanding, patient and loving heart, we create meaningful moments, connected by love. I'm not sure I could ever imagine a more special experience. Spending time with Sally was a gift.

I believe it is easier for a health care worker, as opposed to a family member, to be in the moment. As health care workers we don't have to let go of all that is wrapped up in the valued familial roles that have been held for so many years, or the dreams and expectations that were held for the future. That is a process that often requires some time to grieve and let go.

Most loved ones eventually accept the disease by releasing resistance to reality, coming to understand that they don't have the power to change the diagnosis, and discovering that they do hold power to minimize the impact of the disease on both their loved one living with dementia and themselves. This power comes from knowing quality of life and meaningful moments are still possible and those moments hold immense value.

Individuals living with dementia often live in the moment. As health care workers and loved ones, if we can meet them there, we can all share and experience quality of life.

May we find knowledge, support, and strength to untether from what holds us back and step into the moment with understanding, grace, and love.

It is our mission to create a dementia capable workforce who joins hands and guides families and loved ones along the journey. Knowing how to adapt communication, approach, and activities to a person's stage of dementia is a vital skill of this workforce. Seeing distress behavior as a communication that something is wrong, instead of a symptom to be medicated, is an empowering perspective. Dementia Capable Care training prepares the workforce with these specialized knowledge and skills. The rest? Well, it is simply up to each of us to make the moments the best they can be so living well with dementia can become a reality.

Kim Warchol, OTR/L, is the founder and President of Dementia Care Specialists at Crisis Prevention Institute.