Traveling with your Best Friend: Getting the Most Out of Summer Vacation While Caring for a Person with Dementia

By Kimberly Beauchamp

The summertime season holds the promise of family trips and exciting excursions—a time for trips to the beach, camping under the stars, and plenty of sightseeing. But when your loved one has dementia, vacations can seem daunting, perhaps impossible. Will he or she be able to handle traveling, or will the situation be too disorienting? If your loved one can’t travel with you, who will provide care while you are away?

According to the Alzheimer’s Association, it is not out of the question for a person with dementia to handle a trip, particularly if they are in the earlier stages of the disease, when traveling might still be enjoyable. If you deem it is safe and beneficial for your Best Friend to travel with you, you should plan ahead and take precautions to make the vacation as stress-free and enjoyable as possible. Since new, unfamiliar surroundings can trigger wandering in a person with dementia, the Alzheimer’s Association suggests registering the person with the Medic Alert + Alzheimer’s Association Safe Return program, a nationwide wanderer’s safety program that assists in the safe and timely return of individuals with Alzheimer’s disease and related dementias who wander, become lost, or have a medical emergency. For a $62 fee, care partners receive identification and a live 24-hour emergency response service for their loved one. You should also be sure to pack all necessary medications and up-to-date medical records and have a comfortable change of clothes, snacks, water, and soothing activities on hand. If you will be navigating the airport or staying in a hotel, it is helpful to notify staff ahead of time that you are traveling with someone with dementia so they can assist you with any specific needs you may have (Traveling with Dementia, http://www.alz.org/care/alzheimers-dementia-and-traveling.asp.)

When deciding where to travel, consider well-loved destinations that are familiar to the person with dementia—perhaps a picnic in a favorite childhood park, or a walk on a local beach. Be realistic and flexible—instead of having to navigate an airport and hop on a plane, you might plan day trips just a short drive away so as to provide the least hassle and disruption of routine. In A Dignified Life: The Best Friends Approach to Alzheimer’s Care, Bell and Troxel assert that “simple things are often the best things in Alzheimer’s care.” You can turn even the simplest, smallest excursions into an adventure without having to go far from home. If travel is too overwhelming for your loved one, consider reminiscing about past family vacations. Reminiscing is a powerful activity for a person with dementia, outlined in A Dignified Life as an essential activity in improving memory and reminding a person of his or her life story. Bring out pictures of a family trip to the ocean and let the memories transport you back to that day in the sun without having to even leave the house.

Perhaps you are planning an extended vacation and it is too disorienting for your loved one with dementia to accompany you. You need not necessarily cancel your trip—don’t be afraid to reach out to other trusted family members and friends to help you with caregiving while you are away. Many assisted living facilities and long-term care facilities also offer temporary respite care for people with dementia(be sure to research local programs and facilities ahead of time—reservations are most likely required.) Remember that self-care is a very important part of being a Best Friend—if you need a vacation to feel refreshed and renewed, you need not feel guilty about traveling as long as you consider your Best Friend’s needs and wants with compassion. In order for you to find the best kind of temporary care for your loved one, the Alzheimer’s Association has provided a checklist (p.12) of important considerations and questions for in-home aides, adult day centers, and residential respite programs, so that you can evaluate which option is most optimal for your Best Friend.

With careful planning and a little creativity, you and your Best Friend can still enjoy all that a vacation has to offer. Just have an open mind and see where the summer takes you!

New Facebook App “FaceDementia” Simulates the Experience of Dementia for Online Users

By Kimberly Beauchamp

Fear. Grief. Confusion. Frustration. Loneliness. These are just a few of many painful emotions that a person facing dementia might feel day to day. Short of living through dementia ourselves, how can we ever begin to comprehend the feelings that our loved one experiences? We might research and read about Alzheimer’s disease and other dementias in books and online, or talk to the doctors and the experts to understand the physical and cognitive symptoms. But the Best Friends Approach encourages us to go a step further and truly picture ourselves in the shoes of a person with dementia—to imagine what is like to lose our fondest memories, our independence, our sense of self.

In the spirit of the Best Friends Approach comes a new Facebook App called FaceDementia, an innovative online experience that simulates the progression of dementia, providing an interactive glimpse into the frightening world of memory loss and cognitive decline. Developed by Alzheimer’s Research UK, The FaceDementia app pretends to hijack a person’s Facebook page, deleting or scrambling personal profile information, daily updates, and photographs to mimic short term memory loss, disorientation, and confusion.

Alzheimer’s Research UK developed FaceDementia based on the premise that Facebook serves as a kind of personal diary of daily events, allowing online users to document and preserve important memories and to gather family and friends close. As the FaceDementia app infiltrates a person’s Facebook profile, online users get a more visceral understanding of how dementia can ravage the mind and strip away the familiar. Imagine family and friends becoming unrecognizable, events of the day disappearing completely from memory, past and present blurring together as time becomes distorted. Face Dementia simulates these experiences through the Facebook profile— online family members and friends suddenly become strangers; daily updates vanish, photos capturing beloved memories disappear(The person’s actual Facebook page remains intact and is not damaged; the app uses an overlay to simulate the symptoms of dementia without ever permanently affecting personal online information). As they experience the app, users encounter short video clips where people who have been affected by dementia speak out about how their lives, or loved ones’ lives, have been impacted by irreversible real-life symptoms.

It may be alarming to glimpse what dementia is like for a person that we care about. But an exercise in empathy, like FaceDementia, can strengthen us as care partners and transform us into a “Best Friend.” In their book The Best Friends Approach to Alzheimer’s Care, Bell and Troxel suggest writing down ten favorite activities, passions, and pastimes on separate pieces of paper, then throwing each away one by one as a representation of the tremendous loss a person with dementia experiences. When we imagine what our Best Friend might be going through, we can understand “the why” behind otherwise confusing or challenging behaviors.

Whether we increase our awareness and gain perspective online through social media, or simply meditate about how we might feel if we were in the person’s situation, empathy helps us to better communicate with our Best Friend, anticipate his or her needs, and face dementia together, one step at a time.

Celebrating Doctor Markesbery: Memories of a Doctor, Researcher, and Friend

By Kimberly Beauchamp

In 1985, revered Alzheimer’s researcher Dr. William Markesbery stopped by the Best Friends Adult Day Center in Kentucky for a friendly visit. When he observed the positive energy, engaging activities, and compassionate culture of care at the center, he remarked, “This may be the treatment for dementia.” These words of endorsement came from a man who made enormous contributions to the field of Alzheimer’s research and treatment, a professor, researcher, and doctor with both a sharp, scientific mind and a gentle, down-to-earth demeanor who would become a valued spokesperson for the Best Friends Approach to Alzheimer’s care.

This September, Dr. Markesbery’s birthday month, we pay tribute to a native Kentuckian who spent many of his years researching cures and preventions for Alzheimer’s disease while working to improve the overall well-being of older adults. The late Dr. Markesbery, who passed away on January 30th, 2010 at age 77, served as director of the Sanders-Brown Center on Aging at the University of Kentucky for thirty years, a center dedicated to supporting healthy aging at the forefront of research on the preventions, causes, and early diagnosis of diseases causing dementia. He also developed one of the first ten Alzheimer’s Disease Research Centers, conducting numerous studies on the neuropathology of this disease.

The ever-conscientious, well-dressed Dr. Markesbery was serious about his work, often putting in eighteen-hour days, tirelessly obtaining grants and funding for his research efforts. Over his scientific and medical career, he published more than 410 peer-reviewed papers, won multiple awards (The Irving H. Shaw Award for Distinguished Service in the Field of Health Care, the Khachaturian Award from the National Alzheimer’s Association, the Award for Meritorious Contributions to Neuropathology) and made groundbreaking discoveries about how Alzheimer’s disease operates and progresses in the brain (http://www.alzforum.org/news/community-news/remembering-william-r-markesbery). Among his most famous research contributions, he published the first of several studies disproving the once-popular theory that Alzheimer’s disease is caused by an accumulation of toxic chemicals, like aluminum. Dr. Markesbery also helped craft the Consensus Recommendations for the Postmortem Diagnosis of AD in 1997.

Yet even as he sought out advanced medical and biochemical knowledge about Alzheimer’s disease, this solemn-minded, dedicated researcher also appreciated the simpler wisdom of compassion and kindness in dementia care. He could see the value of laughter, positive social interaction, and lively activity in the daily routines of people with dementia—the day that he visited the Best Friends Adult Day Center, Dr. Markesbery surprised staff when he danced with the clients, letting loose and grooving to the music. Later, he helped serve afternoon ice cream cones and sang songs with his new friends. Dr. Markesbery believed in a treatment that could reach beyond the limitations of medicine—an everyday dose of companionship. Colleagues remember him as a man who knew how to engage with his patients and put them at ease, chatting about their hobbies and histories, learning bits and pieces of their life stories. He always directly addressed his patients in conversation, no matter their cognitive state or stage of dementia (Danner and Thomason, http://www.mc.uky.edu/preadvise/WRM_memoriams/Danner-Thomsason_Neuromolecular.pdf.)

Over the years, as the Best Friends Approach grew and developed out of the original model set forth by the Best Friends Adult Day Center, Dr. Markesbery would remain a steadfast supporter of the approach’s practices and principles. In the acknowledgments to their book The Best Friends Approach to Alzheimer’s Care, Bell and Troxel honor Dr. Markesbery for motivating them with his insistence that the best treatment for Alzheimer ’s disease is “loving care.”

Dr. Markesbery’s commitment to people with Alzheimer’s disease and dementia continued up to the very last moments of his life, even as he became ill—several colleagues recall finding him ‘hunched over” his microscope with an IV of antibiotics attached to his arm, diligently conducting his research (http://www.alzforum.org/news/community-news/remembering-william-r-markesbery.) His patients, colleagues, and friends will never forget his presence or his efforts to improve the lives of people with dementia–and early advocates for the Best Friends Approach will always remember his original words of support and encouragement all those years ago, the day Dr. Markesbery got up and danced.