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.
When I interviewed several experts on the disease, however, 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 only for relatively short periods at a time.
According to Virginia Bell and David Troxel, writing in The Best Friends Approach to Alzheimer's Care, "Too much attention has been paid to the 'tragic side' of Alzheimer's disease. This is a terrible disease. Yet, by dwelling on the negative it is too easy to victimize people with the illness and settle for lower standards of care."
I recently interviewed Teepa Snow, nationally renowned expert on Alzheimer's caregiving. When I asked if she thinks people with Alzheimer's can still enjoy life, she answered, "Yes. Almost all people with dementia, even those in the later stages of the disease, can enjoy life if they have the right support and environment."
The entire book, Creating Moments of Joy: A Journal for Caregivers, by Jolene Brackey, is dedicated to this issue. She writes, "We are not able to create a perfectly wonderful day with [people who have Alzheimer's], but it is absolutely attainable to create perfectly wonderful moments -- moments that put smiles on their faces, a twinkle in their eyes, or trigger [pleasant] memories."
Carole Larkin, owner of Third Age Services in the Dallas/Ft. Worth area, is a geriatric care manager who specializes in helping families with dementia issues. When I asked her the same question, she answered, "Absolutely. They can and do enjoy life. That enjoyment, when it happens, is moment by moment -- pretty much the same way we enjoy life."
Tom and Karen Brenner, a husband and wife team of Alzheimer's caregiving experts, are the authors of You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care. They train family members, professional caregivers and medical staff in the use of cutting-edge interventions for persons who have dementia. Tom answered my question by saying, "Yes. And their enjoyment in life is based, in part, on our enjoyment of them. It's like a swinging door -- it goes both ways."
Karen added, "We believe we can reach all people with Alzheimer's, including those others consider unable to communicate in any way. It's almost always possible to communicate -- even with people who have lost their verbal skills."
People in the Early Stage of Alzheimer's
In the early stages of the disorder, you can often share in whatever fun activities the person enjoyed before developing Alzheimer's. Some games may need to be adjusted, however, to accommodate your loved one's diminishing mental capacity. For example, you may need to play a simple card game instead of bridge or checkers instead of chess.
People with Mid-Stage Alzheimer's
In the middle stages, people with Alzheimer's may have more or less the mental and social skills of a young child. While it's fine to do the old standbys -- things like looking at old pictures or watching movies together, those are somewhat passive. With a little thought, you can find more active ways to spend time together, such as giving the person "props" the two of you play with together. The key words here are "play" and "together."
People in the Latest Stages of the Disease
Ms. Snow, in partnership with Senior Helpers, an in-home care company, developed "Senior Gems," a system that classifies dementia patients into six categories, each named after a gem. The "Gems" table shows the basic characteristics of people at each level and provides tips for interacting with them. Pearls are at the latest stage of the disease.
According to the Gems table, "Pearls," for example,
Like pleasant sounds and familiar voices. They also like to feel warm and comfortable. For people in this category it's beneficial to read or talk to them about good memories They might not understand your words, but your voice will be soothing. You might also bring a new extra soft blanket or sweater for them to wrap up in or brush their hair and apply lotion to their skin.
Photos, Stories and Songs: In interacting with people who have Alzheimer's, Tryn Rose Seley, author of 15 Minutes of Fame, reaches them by sharing songs as well as photographs and stories about their lives.
Visitors: 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.
Outings: 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."
Gifts: 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."
Memory Cafes: Memory Cafes are places where people with dementia still living at home can go with their caregivers (usually once a month) to socialize. According to Larkin, whose website has a list of memory cafes around the U.S. as well as instructions for starting one: "At memory cafes, people with Alzheimer's do things that 'normal' people do. They sit around, talk, have coffee, eat snacks and play games. 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."
Laughter: Alzheimer's disease is a deadly serious topic and deservedly so, but sometimes laughter is the best medicine. This is especially true when the person with Alzheimer's laughs along with you.
Pets and Children: Pets can often reach people with Alzheimer's in ways we cannot. Like pets, people have also found that children, infants and even doll babies can reach dementia patients and give them great pleasure.
Art and Music: Art and music use a different part of the brain from that which is being slowly destroyed. Even those who no longer talk can often remember words and sing songs, especially ones from their young adult years. And these people can often create quite interesting works of art.
Helpful Resources: The above-referenced books by Brackey, Seley and the Brenners can guide people in finding 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 my Romanian life partner, Ed. (All these books are available on Amazon.) In addition, my website has a wealth of information for Alzheimer's caregivers. Another good resource is an article entitled, "Activities," posted on the website of the Alzheimer's Association.
Who out there has found additional 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. She is also a regular blogger on the Huffington Post and the Alzheimer's Reading Room, and she provides a caregiving blog and newsletter on her own website.