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Living with memory loss

There are countless books and published research studies about dementia that give us insight into the

Members of the U-M Elderberry Club have mild memory loss, but that doesn't stop them from having fun, caring for each other and being creative.

Members of the U-M Elderberry Club have mild memory loss, but that doesn’t stop them from having fun, caring for each other and being creative.

disease. However, the best resource cannot be found on a shelf or an online article, but rather in the conversations we have with those who are living with dementia.

I recently visited the Elderberry Club—the first group of its kind in Michigan and the only group in the country that is designed exclusively for women with mild memory loss. The club meets at the U-M Health System Turner Senior Resource Center once a week. The women come together for support, discussion, friendship, creative expression and education.

During meetings, the women participate in a number of activities. They create art, volunteer in the community, write poetry, listen to music or presentations, and much more. The day I visited, the women were creating beautiful marbled ink artwork using the ancient Japanese technique called suminagash. Joy and laughter filled the room. Their personalities were vibrant and unique, and I could tell that they accepted and loved each other. 

What to know about people living with cognitive changes

When I asked the women what they wanted other people to know about living with cognitive changes, the first response I received was, “Well, it’s not contagious.” The room filled with laughter. And after the laughter ended, one woman pointed out, “We are still nice and we are still fun.” The women went on to say that they were still themselves and that they cared deeply about one another.

What people think about the word “dementia”

We discussed the word “dementia,” and everyone agreed it is a word that is stigmatized. The women said that the word was insulting, dehumanizing and derogatory, and they feel as though they are being lumped into a category that is surrounded by negativity.

One woman said, “Everyone assumes dementia means you’re going downhill,” but she feels she has actually improved in the past few months in terms of her overall well-being and contentment.

An initial dementia diagnosis and adjusting to the lifestyle changes that follow can be debilitating and unsettling, as most big lifestyle changes are for anyone. However, it’s important to understand that not all of these changes are negative. The passage of time, being flexible and adopting an optimistic outlook can restore or even enhance quality of life.

Secrets to living a happy, positive life with mild memory loss

For those living with memory changes, living in the moment and having a good sense of humor help in staying positive from day to day. The women said that spending time with family, being around happy and optimistic people, and going to Elderberry Club were also among the things that keep them going.

Advice from people with dementia

Remember:

  • Everyone with dementia is unique.
  • The disease does not define an individual and is experienced differently by everyone.
  • Diagnosis is not a death sentence. Learn to live in the moment, appreciate every good day and hold on through the bad.
  • Keep the joy in your life and find humor in everything you do.

Experiences, stories

My visit to the Elderberry Club reminded me of a saying: “If you’ve met one person with dementia, you’ve met one person with dementia.” In my experiences with individuals with memory loss, I could not find this saying to be truer. Individuals have their own experiences—and their own stories. They have their own struggles—and their own successes. And through all of this, adults with memory loss have a lot to teach.

Have patience, listen to their stories and learn from what they say. They still have a lot to teach us.

Take the next steps

Erin_MobleyErin Mobley is a summer intern at the Michigan Alzheimer’s Disease Center Outreach Recruitment and Education department. Mobley received her bachelor’s degree in the social sciences from Michigan State University and is pursuing a dual master’s degree from the University of Michigan in public health and in social work, with a focus on aging. This summer she is exploring the areas of program development, therapy and research to find the career that will best suit her skills and interests.

 

MADC logoThe Michigan Alzheimer’s Disease Center (MADC) was established at the University of Michigan Health System through affiliation with the Department of Neurology and aims to conduct and promote research on Alzheimer’s disease and related disorders; ensure state-of-the-art care for individuals experiencing cognitive impairment or dementia; and enhance the public’s and health professionals’ understanding of dementia through education and outreach efforts. The infrastructure of the Center stems from a 20-year history as an NIH-funded Alzheimer’s Disease Research Center.