Helping Dementia Patients Find and Save Their Stories

Recently I attended a seminar called Dementia 101, presented by the local Alzheimer’s society. This night was an eye opener for me. My grandmother suffered from Alzheimer’s, and I recalled aspects about her, her care facility, and those around her while I listened to the presentation. To this day my mom wishes we had thought to film my grandmother talking about her past before she lost her ability to speak and to recognize her loved ones.

The seminar was aimed at family and caregivers, but much of what I learned applies to those of us who would like to help dementia patients savetheir stories before it’s too late.

For example, I learned that we should not ask a dementia patient to reason or problem solve, we should not correct their statements, nor should we try to reorient them—all difficult to remember in an interview when you might have questions or want to keep the interview on track!

I have found that surroundings can really affect how a person feels. For dementia patients, clutter is upsetting and noise can be distracting, but the right music can help trigger memories. Watch this video clip Alive Inside, from the Music and Memory Project, which illustrates the power of music to get someone with dementia talking:

Here are a few more tips I learned in the seminar I attended.

  • Be aware of your subject’s mood and gently try to enter into his or her frame of reality. Looking through a photo album together might start the flow of memories.
  • Move slowly and approach from the front because dementia patients often lose peripheral vision. Try to keep a pleasant look on your face. I tend to furrow my brows when concentrating, and this could seem like disapproval.
  • Use short, clear words, simple sentences and common phrases.
  • Talk about one thing at a time and focus on concrete things, not abstract ideas.
  • Constantly reassure the person that everything is okay. Announce what you are doing —”I’m just getting up to adjust the microphone.”
  • Allow a longer time for the interview—the person is likely to repeat answers or questions or just take longer than expected to answer questions. Make sure your client is aware that the interview might take longer than normal.
  • Most importantly, be willing to change your behaviour to adapt to the dementia because the person with the disease cannot change. Remember to see the whole person and not just the disease.

These tips would have greatly helped us understand my grandmother, and are helpful for subjects I work with today who suffer from dementia. I need to remember to slow down, have photos and favourite old music handy, and stay on topic rather than fill the silence with more questions.

What tips and advice can you offer? Please share your comments and experiences so we can continue learning!

Thanks to Alzheimer’s Society of Cambridge, Ontario for many of these tips.

Editor’s Note: A longer version of Rebecca’s post about working with subjects with dementia appeared in her blog last month. Next week in this space, APH member Susan T. Hessel will have a suggestion for helping caregivers, loved ones, and personal historians see the complete person who still exists inside the dementia patient.

About today’s contributor: Rebecca Robinson, owner of Life Story Film in Canada, has worked as a video biographer/personal historian for three years. She also works as a Certified Legacy Advisor with Legacy Stories to help families catalogue and document their life and legacy using both video and “Talking Photos.” She can’t think of a more rewarding way to make a living! Rebecca has been a member of the Association of Personal Historians since 2010.

Photo Credit: Elderly Woman in Glasses, Pacian derivative work: Skye. marie [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0/)]. Used via Wikimedia Commons

This entry was posted in Elderly/Aging, Family Stories, Interviewing, Personal Historians, Uncategorized and tagged , , , , . Bookmark the permalink.

8 Responses to Helping Dementia Patients Find and Save Their Stories

  1. magical grace–thnaks for sharing this.

  2. Very moving piece, and I also enjoyed the tips. My experience has been it’s all about listening, sometimes it all starts with one spoken word, or even a commercial they see on TV. Btw, dementia patients often can’t distinguish between commercials, fiction or nonfiction on TV. So take the time to comfort them if they see something disturbing.

  3. Beth LaMie says:

    My godmother suffered from dementia but we shared a wonderful time one day. When I arrived, she thought I was my mother and we had a lovely conversation in a day some 80 years earlier. I was able to ask her questions about how she met her husband at a dance and she told me all about it. What a terrific experience, although when she came back to the present time, she seems really confused and maybe frightened.

    One regret was that I didn’t have my digital recorder with me to capture the conversation.

  4. Fran Morley says:

    It’s fascinating to see what does and does not get through to someone suffering from dementia. In my mother’s case (caused by a tumor, not dementia), she lost the ability to recognize or communicate with people around her but she continued to read from her favorite books. Or at least, she held the books open in front of her and turned the pages. Was she was reading and understanding? Did the printed word reach a part of her brain similar to how listening to music works for the man in the video clip? I wish I knew…

  5. I hope so Fran!
    One thing the presenter from the AZ. Society said that night is that they DO retain the memory of how to read. I think it depends on what stage they are at of course. But the stories progress more slowly so they can keep track of it – and just like musical memory is long retained, so is the written word.
    Please visit my FB page where the full tips article is also listed and LIKE me if you can! http://www.facebook.com/silverscenes

  6. Sam says:

    Rebecca, this is so moving! I saw this video clip last year and posted it everywhere. I’ve worked with those with memory deficits for a long time and have come up with a few tidbits that can reach waaaaay back there and bring up a happy memory. Here are just a couple:

    1. I bring photos of candy that were popular in the early 1900s.

    2. I also play music from the era while I’m getting settled and they get comfortable with me. Big band, jazz and blues, Mitch Miller, and old hymns. I have a playlist that I bring and forward to the next one if a particular song doesn’t seem to resonate.

    3. Morning interviews are almost always better due to the Sundowner’s Syndrome some with Alzheimer’s can suffer from in the afternoon or evenings.

    I’d love to have your piece as a guest blog on my website in a few months if you would like it. Let me know!

  7. Sue Hessel says:

    These are such important tips. Very grounded and helpful.

    As you will read next week in my APH blog post,there still is a person inside despite the difficulties that occur in the mind of someone with dementia.

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