Over the years I’ve interviewed individuals with dementia brought about by Alzheimer’s or small cerebral strokes. What I’ve learned I felt might be of value to those of you facing a similar challenge of interviewing someone with dementia. Keep in mind that in advanced stages of Alzheimer’s it is virtually impossible to conduct an interview.
Here then are my suggestions:
Be flexible with your interview schedule. Your interviewee might have days when they’re simply not up to being interviewed.
Be patient and avoid completing sentences for the person.
Speak clearly and slowly.
Ask one uncomplicated question at a time.You may have to repeat the question.
Keep the interview time short. Elderly, sick people usually exhaust easily.
Focus on one topic. Focusing allows you to get at missing details from different perspectives.
Don’t niggle over a name or date. Reassure the interviewee that, “It’s okay. We’ll worry about that later.” Be aware that names, places, and dates that the interviewee provides might be inaccurate. If you can verify these with someone in the family, that would be helpful.
Have a transcript prepared of your interview session and at your next meeting have the interviewee read it over. Reading it might prompt some memory recall.
Refresh the interviewee’s memory of your last interview. Something like, “Yesterday you told me about your dad. You said he was a stern man. What more can you say about your father?”
One of the last things to go with many dementia victims is their musical memory. Perhaps some musical selection, a favorite tune, might spark some memories. It’s worth a try.
It could be useful to have a family member present to help prompt some memories.
Let me know if you’ve found some other approaches that work well when interviewing someone with dementia.
According to a recent study at the University of California, listening to music can be of benefit to Alzheimer’s patients. I became aware of this several years ago when I directed a series of documentary films for the National Film Board of Canada entitled Caregivers. In my research I talked to a number of people caring for a family member with Alzheimer’s. What was remarkable were the number of stories of people who had all but forgotten who they were but who could still sit down at a piano and play or sing songs from long ago.
The poet William Cowper in his poem Music and Recollection captures the power of music to unlock memories:
With easy force it opens all the cells
Where Memory slept. Wherever I have heard
A kindred melody, the scene recurs,
And with it all its pleasures and its pains.
Such comprehensive views the spirit takes,
That in a few short moments I retrace
(As in a map the voyager his course)
The windings of my way through many years.
The other day, I was again reminded of this phenomenon. I was responding to a colleague’s request on the Association of Personal Historian’s Listserv. She was asking for help on how to gather information for a life story from an individual whose memory was fading. I mentioned the possibility of using music to aid in memory recall. This sparked recollections from other Listserv members who reminisced about touching moments when music helped an aging parent . They have generously allowed me to share these stories with you here.
My mom, Marie, died from Alzheimer’s. She had always loved music and played the piano by ear. Shortly before she died, long after she really knew who we were, long after she could walk or take care of her basic needs or read or even carry on much of a conversation, my sister wheeled her over to the grand piano in the facility where she lived. And she played a tune. I had forgotten all about this until I read Dan’s post. As they say, “thanks for the memories.”
I worked briefly on a project a few summers ago with a neighbor whose mother no longer remembered anyone in the family or her group of long-time friends (I was actually helping him wrap up her story because he had given up on getting more information).
While he was visiting her one day in a facility where she was staying after a fall, he watched as his mother drifted toward a member of another family. They had walked into the community room carrying a violin case for one of the other residents. Without hesitation, his mother rolled her wheelchair up to the stranger and asked if she could “see” the violin. And, to his amazement, moments later, she was playing it!
My neighbor, her son, knew that she had played in her younger years, before marrying , and that she had always said she was quite good. In talking with her after the impromptu concert, she suddenly asked if he would like to take lessons from her. He had no desire to learn but accepted her offer so that they would have a mutual activity.
Weeks later, she bragged about him as “her star pupil” and, during their breaks, she ended up telling him stories from a part of her life that he’d never known. The “lessons” lasted nearly a year before her mind and her physical control began fading rapidly. Interestingly, during those months, she became very introspective about her parents and the impact they had on her life and very philosophical about her aspirations and dreams – but, the observations and assumptions she made were based on the period of her life as a concert violinist!!
As we were moving my parents out of their home into an assisted living facility (because my dad needed that kind of care), one of the last things to leave the house was the old family piano. It had been in Dad’s childhood home and he had played most evenings after supper for more than eighty years. The evening before the piano movers arrived, my partner Kathy and I went over to have dinner with my parents. Kathy, who is a very talented musician, went to the piano and began to play. Knowing that Dad loved Jerome Kern’s melodies, she started out with some tunes from “Showboat.” Dad had been sitting in his armchair, staring blankly at the wall. When the music began he suddenly focused on Kathy and started to sing along, perfectly on pitch, with every word of the lyrics intact. They played and sang together for almost two hours while Mom and I smiled at each other and wept silently in the other room. It was the first time that Dad had perked up like that in months, and it was a wonderful gift to us all. Dad wasn’t able to play a single note by himself anymore, but with Kathy’s help the music came back to him.
Last week I wrote a post about the benefits of life stories and communicating with Alzheimer’s patients. Stephen Evans, a colleague of mine in the Association of Personal Historians, reminded me of a movie released in 2004 that deals with the subject of reminiscence and Alzheimer’s. It’s called The Notebook, based on the novel by Nicholas Sparks. You can read Roger Ebert’s review of the film here.
The movie is a sweet and somewhat idealistic portrayal of dementia. But it does convey the power of personal stories to make a positive difference in the lives of those suffering from Alzheimer’s. If you haven’t seen The Notebook I would certainly recommend you take a look. Check out the trailer below.
Some years ago, when I was a filmmaker I did a documentary on family caregivers. The show dealt with five caregivers, two of whom were struggling to look after a parent suffering from Alzheimer’s disease. I had a close-up look at the challenge it inflicts on patient and caregiver alike. Since I became a personal historian five years ago, I felt that there was therapeutic value in recording the life stories of those with Alzheimer’s.
Soon after starting my personal history work, I had the opportunity to do a series of video interviews for a charming and accomplished woman who was at an early stage of Alzheimer’s. Both she and her family realized that if I didn’t get the stories recorded they would soon be lost forever. She thoroughly enjoyed my visits and seemed stimulated by the recall of familiar stories from her past. Today that same woman has deteriorated considerably but her family finds some comfort in knowing that her life lives on in these recordings we made.
The other day I read an article in MayoClinic.com Alzheimer’s: Mementos help preserve memories which seems to bear out my anecdotal observations about the value of life stories and Alzheimer’s. The article notes:
“Caregivers become the memory for their loved one with Alzheimer’s disease,” says Glenn Smith, Ph.D., a neuropsychologist at Mayo Clinic, Rochester, Minn. “By gathering memories, you can bring important events and experiences from your loved one’s past into the present. You’re the link to his or her life history….By creating a life story, you affirm for your loved one all the positive things he or she has done in life and can still do. Even after your relative’s memories start to fade, creating a life story shows that you value and respect his or her legacy. It also reminds you who your loved one was before Alzheimer’s disease.”
Tom Kitwood in his groundbreaking 1997 book, Dementia Reconsidered believes that a Life History Book for a person with dementia, complete with photographs, should become best practice. He says, “In dementia a sense of identity based on having a life story to tell may eventually fade. When it does biographical knowledge about a person becomes essential if that identity is still to be held in place.”
If you know a family member at an early stage of Alzheimer’s disease, you might give serious consideration to recording their life story. If you’re a professional personal historian unsure if you should work with clients who have dementia, give it serious consideration. You could be providing a wonderful gift.
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