"As Alzheimer's disease progresses, the need to nurture, love and be loved increases." American Assoc Geriatric Psychiatrists
Photo by Tom Eblen
Three decades ago, the Best Friends Day Center in Lexington, KY began creating a new approach to caregiving for people with Alzheimer's and dementia called the "Best Friends Approach", which is now an internationally recognized care model that has been implemented in over 30 countries.
Virginia Bell began the Best Friends program in 1984, and has co-authored several books on the subject of Alzheimer's therapy, and at 92 years old, continues to be an energetic force behind the Best Friends initiative.
The center says they are always looking for volunteers to spend time with residents (volunteers' ages range from high school students to those in their 80s and 90s), however, they are particularly looking for men, who comprise only 18 of the center's 88 current volunteers.
Bell says that male volunteers are especially helpful to male participants, who are sometimes disinterested in the center's arts and crafts sessions, and enjoy rather talking about sports and their careers or military service.
Read more: Tom Eblen: Center needs volunteers to help with therapy for Alzheimer's patients
On Sunday, actress Julianne Moore won a Golden Globe for her portrayal of a patient with early-onset Alzheimer's in the film Still Alice. In the movie, Moore's character is just 50 years old when she is diagnosed, and the narrative of the film follows both her and her family's struggle to cope with her mental decline.
Up to 5% of Alzheimer's sufferers are under the age of 65—typically in their 40's or 50's. These younger patients diagnosed with the disease are considered to have an "early onset" of Alzheimer's, which is where this form of dementia gets its name.
Consulted by Moore during her research for the film, Mary Sano, PhD, professor of psychiatry and director of Alzheimer’s disease research at Mount Sinai School of Medicine, says that the symptoms of early-onset Alzheimer’s are no different than symptoms of more typical cases; however because the disease is so rare in adults under the age of 65, the signs may not be as quickly recognizable.
Marian Grunwald, Earl Elfstrom and Verna Matheson (left to right) bounced a balloon back and forth with nursing assistant Rick Pavlisich on Dec. 13, 2013 at an Ecumen nursing home in Chisago City, Minn. Photo Credit: Glen Stubbe/Star Tribune, Minneapolis St. Paulvia NPR
Activity staffer Jessica Abbott, of Pathstone Living, a nursing home and memory care facility in Mankato, MN, is responsible for making sure patients at Pathstone have easy and natural access to activities that are both soothing and mentally stimulating.
Small comforts like making apple crisp while listening to music help calm patients and give them something relaxing and meaningful to do. These planned activities have also allowed Pathstone to reduce the number of patients taking antipsychotics--drugs the FDA says can increase the risk of death for people with Alzheimer's and dementia.
With their unique program called Awakenings, Pathstone was able to reduce its antipsychotic drug use among patients by 97 percent within one year.
Shelley Matthes, a registered nurse working for the nonprofit Ecumen, which runs Pathstone, says the changes in Pathstone's residents were as dramatic as the antipsychotic reduction itself.
"'They started interacting,' recalls Matthes, 'and people who hadn't been speaking were speaking. They came alive and awakened.'" (source)
Read more: This Nursing Home Calms Troubling Behavior Without Risky Drugs
Many health professionals working with Alzheimer's patients assure that therapeutic activities should focus mainly on the person's interests before the disease, as well as stimulate both older and more recent memories, while highlighting the patient's remaining abilities and make their compromised abilities easier to manage.
Each activity will affect individual patient's differently; not all activities will have a positive effect on every patient.
Examples of therapeutic activities proven through various research studies to improve and reduce behavorial problems in people with Alzheimer's include playing their favorite music, one-on-one interactions, playing videos of of family members, going for walks, and spending time with a special pet.
Memorable Pets enriches these fragile moments spent with loved ones with Alzheimer's by providing plush cats and dogs that help relax and soothe Alzheimer's patients, as well as give them an extra sense of comfort and security.
In the sixth part of their series documenting and reporting the challenges of dementia and Alzheimer's personally faced by families, Observer Reporter looks at the life of Rudy Keron, age 74, who was diagnosed with Alzheimer's seven years ago. In Rudy's case the disease progressed rapidly, and he soon lacked the ability to speak, brush his teeth, or recognize family members.
For five of these seven years post-diagnosis, Keron's wife Judy, took care of him herself in their home in Washington before finally deciding to move him to the Washington County Health Center in 2012.
"'I was in denial when we got the diagnosis,' said Judy. 'I took Rudy to Pittsburgh for additional tests at Allegheny General Hospital and had CAT scans sent to them, but the doctors said the prognosis was right. But you grasp at straws, you look for any other explanation that you can.'" (source)
Four of Rudy Keron's sisters also died as a result of Alzheimer's, however Judy Keron relayed that, despite this, they had never had a discussion about the disease in the 32 years they had known one another.
Rudy now hardly speaks, but carries a stuffed animal around with him frequently for comfort. He was once a combat photographer in Vietnam, and loved music, woodworking, and drawing.
His wife Judy knew nothing of Alzheimer's before her husband's diagnosis, and continues to read pamphlets and scour the internet for any information she can find on the disease, but is very careful about misleading material that can often become disheartening. "'Sometimes it gives a sense of hope, and that's the worst thing, for them to make you think it can get better. It's not going to get better for him.'"
With the very recent passing of Tom Magliozzi on November 3rd, one of the hosts of NPR's "Car Talk", due to complications of Alzheimer's, recent reports are quick to try and explain just how Alzheimer's disease causes death.
Alzheimer's is a progressive brain disease in which deposits of abnormal proteins build up on the brain and cause brain cells to die. However, Dr. Marc L. Gordon, chief of neurology at Zucker Hillside Hospital in Queens, New York, says that "Alzheimer's disease is not usually a direct cause of brain death — that is, it does not suddenly cause the entire brain to cease functioning. Most often, the complications of the debilitating disease are what cause the death of Alzheimer's patients." (source)
These complications include infections, bedsores, and aspiration pneumonia, which occurs when Alzheimer's patients (who often have difficulty swallowing) inhale food. Pneumonia is responsible for nearly two thirds of the deaths of patients with dementia, according to the Alzheimer's Society.
Though the CDC reported in 2010 that approximately 85,000 people in U.S. died from Alzheimer's disease, a recent study shows those numbers may be up to six times higher, due to many death certificates not listing Alzheimer's as an underlying cause of death.
Actor and filmmaker James Keach has taken up the reins in directing a documentary of the country-music legend's life as he perseveres and adjusts to the later stages of Alzheimer's—all while still playing complex guitar chords and pouring his soul as best he can into each melody.
Glen Campbell faces these trials with commendable resolve and a sense of humor that inspired Keach. The film covers Campbell's 2011-2012 "Goodbye Tour", in which he played 151 shows across the globe, but also the personal aspects of his day-to-day life with the deteriorating disease.
"The film doesn't flinch from the harsh realities of Alzheimer's, showing Campbell losing his temper at times with loved ones and frequently falling back on the jovial manner that made him an engaging star of "The Glen Campbell Goodtime Hour" variety series that ran on CBS from 1969-71." (LA Times)
The film ends with Glen's last recording session, in 2013, featuring a new song which powerfully displays his love for the people who have been there for him, entitled "I'm Not Gonna Miss You".