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Connecting with a person who has Alzheimer’s Disease

I’m excited to share another guest post with our readers today. Ellen Woodward Potts is the co-author of

A Pocket Guide for the Alzheimer’s Caregiver

and here she discusses how to connect with a loved one who has Alzheimer’s Disease and shares some of her own personal experiences.

At FirstLight, we believe if you have met one person with dementia, you’ve only met one person. That is, each individual will talk, act, remember, and behave differently, not simply because of what stage of dementia they are in, but because they are who they are.

That’s why we’ve developed a unique Dementia Program—building care around the individual, not the disease—incorporating who they were, not just who we see today. It’s a personalized and engaging approach, where our goal is to make sure those affected by this disease live the rest of their lives with purpose. You can read more about our program here. — Jeff Bevis

If you’ve seen read or seen “The Notebook,” you get an understanding of the need caregivers have to find that one moment of connection with a loved one who has Alzheimer’s disease. Perhaps the biggest loss people experience with this disease is the loss of shared memories. As time goes on, those fade, and it becomes more and more difficult to connect with the person. However, you can connect with your loved one, even into the late stage of the disease. It just takes time, some thought, some creativity and some effort.

In general, the most important thing to remember is that you must ENTER THE WORLD of the person with Alzheimer’s disease. You cannot bring them back to yours. If the person tells you he had breakfast with his mother that morning (and you know his mother had been dead for many years), ask him what they had to eat or what they talked about. If the person tells you someone stole her wallet, offer to help her look for it and redirect her to something else in the looking process — old pictures, a television program, or a familiar object. Constantly correcting the person leads to low self-esteem and depression, very common side effects of Alzheimer’s. Think of it from their point of view, if you were constantly corrected and told you were wrong, how would you feel? Alzheimer’s may keep the person from remembering exactly what you said, but the feeling of being constantly in the wrong will persist.

Music is one of the best ways to connect with a person who has Alzheimer’s disease, regardless of their stage in the disease process. What was your loved one’s favorite music in his teens and twenties? If you bring out those songs, even dance to them if possible, you will be surprised at the results. Is your loved one religious or was she religious in her youth? If so, bring out the religious songs she would have sung as a youngster. Until the day he died in late stage Alzheimer’s disease, my father-in-law could sing the hymns of his childhood, even though he would never sing with the congregation in church. At the time of his death, he had not spoken in 4 – 6 months, but he could still sing. We discovered this when he was in an inpatient hospice facility in the last 4 days of his life. A great example of a musical connection is the video of Naomi Feil (the author of the “validation therapy” concept) and Gladys Wilson. The church songs of Gladys Wilson’s youth “awakened” her to a connection with Naomi Feil, even when to all appearances, Mrs. Wilson had lost the ability to interact with anyone.

Music uses more parts of the brain than any other activity, so it can often bypass damaged areas. Religious music in particular (if the person is or was religious in youth) is valuable, because there is safety and emotion tied to it, thus involving even more parts of the brain. Also, other than smiles and affection, music is often the only way to connect with a person is the late stages of the disease.

Familiar objects and family photos can be a wonderful way to connect. Because Alzheimer’s steals the brain’s ability to lay down new memories, it would be expected that a woman would remember details of her wedding from 50 years earlier, but not what she had for breakfast. In the “Art to Life” class sponsored by the University of Alabama Honors College and Cognitive Dynamics Foundation, the students connected with a participant in mid-stage Alzheimer’s disease by bringing out her wedding dress. The woman, who had become withdrawn and depressed prior to this conversation, discussed her wedding preparations and wedding day with great enthusiasm — fittings for the dress, family drama, her excitement at marrying the man she loved, etc. Pictures can bring forth the same enthusiastic responses. Bring out family photos from the person’s childhood or early adulthood. You will be surprised what happens.

All the new research points to the fact that the person with Alzheimer’s is “still here.” It is our job as caregivers to find ways to reach our loved ones.

About the Author

Ellen Woodward Potts is a regular monthly contributor to Maria Shriver’s website and co-author of A Pocket Guide for the Alzheimer’s Caregiver, along with her neurologist husband, Dr. Daniel Potts. Ellen, Daniel and their immediate families have cared for 8 family members with Alzheimer’s disease and vascular dementia, and the book is the Pottses’ attempt to help others through their experiences. Ellen serves as Managing Partner for Dementia Dynamics, a company dedicated to educating dementia caregivers, and blogs, facebooks and tweets (@DementiaDynamic) helpful information regularly. She teaches “Leadership Development through Service” at the University of Alabama and serves on the boards of Caring Congregations (which operates 3 dementia daycare centers and provides other service to those with memory disorders); Habitat for Humanity of Tuscaloosa; and Living River: A Retreat on the Cahaba (the future camp and conference center of the Presbyterian Church in Central Alabama). Ellen lives in Tuscaloosa, AL with her husband and two daughters, Julie and Maria.

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