By Mary Marley
+Alzheimer's Reading Room
Among the general public, Alzheimer’s is typically considered a horrible, cruel and devastating disease that destroys its “victims.” One that robs them of their very humanity.
However, when I interviewed several experts on the disease, a somewhat different picture emerged.
They unanimously agreed that although Alzheimer’s is a terrible disorder, people who have it can and do still have the capacity to enjoy life, even though for those in the later stages of the disease it may be for only relatively brief periods at a time.
This is Part 2 of Can People With Alzheimer’ Experience Joy? To read Part 1 go here.
Can People With Alzheimer’ Experience Joy? Let Me Count the Ways (Part 2) ...
Photos, Stories and Songs
In interacting with people who have Alzheimer’s, Tryn Rose Seley, author of 15 Minutes of Fame , shares stories, photographs, and songs with the people she’s visiting. “Keep the best stories of a person’s life in your mind, your heart, and on your lips," she says, “And it will keep your caregiving steps more steady, with more joy.”
I remember an example of the stunning responses that looking at photos can elicit. I once showed Ed a photo of us together 20 years earlier. He said in a soft voice, “Ah. . . She loved me.” He didn’t recognize that I was the woman in the photo, but he knew and experienced love. When he was silent for several seconds I asked him what he was thinking about. “I’m thinking about love,” he whispered. I couldn’t decide if he was in the past or in the present. I decided it didn’t matter.
Unfortunately, some people stop visiting a loved one who doesn’t recognize them anymore. However, a pleasant visit will almost always leave the person in a good mood long after you’ve left, even if he or she didn’t know who you were.
Brackey supports this contention, writing “Five minutes later they won’t remember what you did or said, but the feeling you left them with will linger.” While the visit or activity was going on they thoroughly enjoyed every moment of it and that’s what matters.
Outings can be another source of pleasure for people with Alzheimer’s. However, Snow cautions, “While some people with dementia enjoy these enormously - primarily those in the early stages - those in the late stages may become confused and agitated.”
Sometimes it’s the little things that grab the attention of people with Alzheimer’s the most. Snow advises, “Keep gifts immediate and simple. Bring them something to look at, listen to, touch, smell or taste.” Once I took Ed a new pair of shoes. Every time I visited for the next month he said, “These are the most wonderful shoes I have ever had in my entire life!”
Memory Cafes are places where people with dementia still living at home can go with their caregivers (usually once a month) to socialize. They are quickly springing up around the country.
According to Larkin, whose website has a list of memory cafes around the US as well as instructions for starting one,
“People with Alzheimer’s, especially those in the earlier stages of the disease, enjoy being around others like them. This is the reason Memory Cafes are so popular. They do things that ‘normal’ people do. They sit around, talk, have coffee, eat snacks and play games. There is no pressure on them to perform and no embarrassment. We want people to know that there are good days, fun days, and that people [with dementia] can be happy.”Touch
Snow says that you should always get verbal or non-verbal permission before touching a person with dementia. ”There are different types of touch,” she says. “Light, moving touch is stimulating; deep, slow touch is calming.” Ed had an increased need for touch as his dementia progressed. He usually held the hands of his visitors the whole time they were there – even the male ones.
Alzheimer’s disease is a deadly serious topic and deservedly so, but sometimes laughter is the best medicine, especially when the person with Alzheimer’s laughs along with you. Emily Mosher, a grant writer at the American Academy of Family Physicians in Kansas City, shared the following story, entitled “A Crafty Grandfather,” on my website blog
“The whole family argued with my grandfather that he shouldn’t drive anymore, but he refused to stop. Fortunately, his car soon broke down. His mechanic, who knew grandpa shouldn’t be driving, told him that he needed to get the required part from the internet and that it would take a long time. Grandpa then called my cousin, Karen. He told her in his sneakiest voice, ‘I need you to drive me to the internet!’ They both had a good laugh over that one.”Another example of the mutual benefits of laughter is that when Ed was living at Cincinnati’s Alois Alzheimer Center he used to steel his spoon after each meal and take it back to his room. One day as I was sitting with him at lunch I told him not to steal the spoon – that it belonged to the facility. “Oh, no,” he answered. “I take them every day with no remorse!” He was aware he’d said something amusing and we both laughed heartily.
Pets can often reach people with Alzheimer’s in ways we cannot. I experienced this personally once when I took my little Shih Tzu, Peter, to visit a woman at the Alois Center. This lady barely talked and spent most of her time in bed. Peter immediately started licking her face. I told her that he didn’t usually “kiss” people he didn’t know. She looked me right in the eye and said “Dogs are very selective.” It was the first lucid remark she had made for months.
Like pets, people have found that children, infants and even doll babies can reach dementia patients better than we. The Brenners, in their new book, You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care , describe the bond that quickly forms between children and people with dementia as follows
“There is a kind of magic that happens when we bring young children and elders [with dementia] together. We have witnessed this phenomenon many, many times over the years. It is always the same: the young children and elders are drawn to each other.”Art
Art uses a different part of the brain from that which is being slowly destroyed. An article published on the Alzheimer’s Reading Room website, Art Therapy and the Life of an Alzheimer’s Patient, narrates the story of a man named Lester Potts who began painting after he developed Alzheimer’s Prior to his enrollment at Caring Days Adult Daycare Center, Lester had largely stopped smiling. He had never painted a picture. One day the Center gave him materials to paint with and then a miracle occurred. Lester miraculously became an artist of national acclaim.
Music uses a different part of the brain from that which governs speech. Even those who no longer talk can often remember words and sing songs, especially ones from their youth. Gregg Warshaw, MD, former President of the American Geriatric Society, told me he has even seen people who can hardly walk get up and start dancing when music was played.
The above-referenced books by Brackey, Seley, and the Brenners can help people find specific ways to bring joy to their loved ones with dementia.
In addition, my book, Come Back Early Today , provides extensive details about how I engaged and brought joy to Ed. (All these books are available on Amazon.)
In addition, my website has a wealth of information for Alzheimer’s caregivers.
Another resource is an article entitled, “Activities,” posted on the website of the Alzheimer’s Association .
Who else out there has had other experiences of ways to bring joy to people with Alzheimer’s?
Marie Marley is the author of the uplifting, award-winning book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy . To learn more about Marie and to accesss her wealth of information for caregivers go to Come Back Early Today .
A much shorter version of this article appeared on the Huffington Post .
To learn more about Alzheimer's and Dementia visit the Alzheimer's Reading Room .