“It was three years ago – at Thanksgiving,” says Michelle McGaffrey*(personal information has been changed for privacy), recalling the last time her mother recognized her. “Ten or 12 seconds, and then it was gone.” Seemingly out of the blue, Michelle’s mother recognized and greeted her. After a brief conversation, however, her mother resumed her demented state. “All of a sudden, a fog just went over her face,” McGaffrey says, “and that was it.”

Most people who have witnessed the devastating effects Alzheimer’s disease (AD) say that they can’t imagine a more agonizing death than suffering from dementia. Eroding everything about them that makes them human, the disease often leaves senior citizens imprisoned within their own bodies.

Patients may start asking the same questions repeatedly; becoming lost in familiar places; being unable to follow directions; getting disoriented about time, people, and places; neglecting personal safety, hygiene, and nutrition. In time, however, they will start to forget the name and face of a son or daughter, which is a heartbreaking reality for all parties to witness, say researchers of the New York-based University of Rochester School of Nursing.

Researchers recently found that when patients are aware that they are losing their physical and mental grasp on reality, they are in the middle stage of the disease. At this time, patients tend to suffer the most dramatic emotional breakdowns, as opposed to the earlier or latter stages of their diagnosis. In fact, they are five times more likely to suffer in this way, says Nancy Watson, RN, PhD, head of the school’s Center for Clinical Research on Aging.

“These patients may still be conscious of their cognitive losses, but they are losing their ability to cope or compensate for them, resulting in extreme emotional distress,” she says. Behaviors at this stage may include screaming or hitting caregivers, insulting other residents, being terrified of ordinary things like elevators, becoming distraught at not being allowed to visit a neighbor (deceased or alive), pacing back and forth, sitting in a corner and wailing or sobbing uncontrollably, or pounding on a table or throwing things.

“It’s clear that these episodes cause extreme emotional pain for the person as they experience it. The angst they’re expressing is truly felt. These patients are in intense emotional distress and need immediate help from staff,” Watson says. “It’s a very painful and sad time for them.”

Watson believes that one way to help lessen the impact is to try to make life better for patients during this phase of dementia, which starts with understanding their reactions.

Continuing to engage patients in activities that they enjoy is another way for healthcare professionals to reach patients, says Vicki Rackner, MD, FACS, a patient advocate and founder of Medical Bridges, based in Mercer Island, Wash. She believes that healthcare professionals should think outside the box when working with these patients. Although it’s not easy to encourage socialization among patients drawn to isolation, Rackner says it is the simple acts carried out by caregivers and health professionals that often lead to the most significant responses in patients with dementia.

While working in a hospital in Wash., Rackner witnessed a patient’s face “light up” when she saw a doll; another patient reacted in a similar way when brought outside to look at a tomato garden. And, she witnessed the greatest breakthrough when one patient was given access to a piano. The patient played the piano remarkably well, shocking everyone around her. “Even though she could not remember a single relative, she played [the piano] flawlessly,” Rackner says.

Rackner believes that if caregivers, therapists, and other healthcare professionals are willing to indulge their patients’ passions and senses, then they will discover creative ways to improve patients’ quality of life.

For example, therapists can facilitate activities that are mentally and physically stimulating in a therapeutic setting, such as: presenting a doll in play therapy, playing an instrument or singing in music therapy, gardening or walking around in a garden in horticultural or occupational therapy, and art therapy. In this way, therapists can stimulate the minds of patients with dementia by enabling them to experience the simple joys of staying active, which offers patients a renewed sense of satisfaction and curiosity for life.

The Promise of Horticultural Therapy

Johanna Leos, MAg, MBA, HTM, says therapists should encourage patients to participate in activities that engage their senses, such as gardening. “Horticultural therapy provides a great outlet to encourage socialization and support therapeutic objectives,” she says.

As the horticultural therapy coordinator at the Chicago Botanic Garden, Leos has worked closely with senior citizens. Since 1996, she has also worked offsite as a horticultural therapist to provide design strategies for successful and sustainable horticultural therapy programs.

Of the 7,000 clients who take part in the activities at the Garden, Leos says that a large majority are from long-term care facilities. The benefit of horticultural therapy for patients with dementia is that it stimulates the five senses – sight, taste, smell, sound, and touch – simultaneously. Patients have the opportunity to actively participate in the world around them, which may allow them to successfully achieve their therapeutic goals.

Elderly patients can receive many benefits through gardening, such as: sensory, memory, vocabulary, and speech stimulation. “Horticultural therapy can be used to stimulate memory. We will use mnemonic techniques to help them repeat and memorize the scientific plant names in the garden. Then, if the plant name starts with a letter of one of their relatives’ names, we ask them if any of their relatives’ names start with that letter,” says Leos.

Mneumonics are great for dementia patients to enhance their memory and speech; it’s a simple and trick that can casually be added in activities or conversations to help them remember peoples’ names, faces or words that are foreign to them. An example could be: “Look at this beautiful ‘daisy’. I bet your granddaughter, ‘Danielle’ would love a bouquet of ‘daisies’ when she comes to eat dinner with you tonight.”

Gardening is also a great way to get patients moving. Staying physically active doing activities such as picking flowers to include in a center piece at the dinner table is therapeutic for them because it gives them an opportunity to move around and also gives them a sense of accomplishment and involvement.

“Just the act of getting up to take care of plants can later translate into other areas of their life,” says Leos. For instance, filling a watering can helps a patient to exercise a similar skill that is used to do other daily occupations, such as standing to cook a meal or wash dishes. “The activities or skills practiced in horticultural therapy and gardening translate into daily living skills that will help patients live more independently for a much longer period of time – plus, it’s fun!” Leos says. 

Since the most significant problems associated with dementia are the losses in memory, independence, initiative, and participation in social activities, occupational therapy can dramatically improve the daily functioning of patients with dementia.

For instance, according to a study conducted at the University Medical Center Nijmegen in the Netherlands, community-based occupational therapy improves patients’ sense of competence, as well as reduces the burden on the caregiver, despite the patients’ limited learning ability.

The researchers say that since “outcomes, such as improvement in activities of daily living and sense of competence, are associated with a decrease in need for assistance, we believe that, in the long-term, occupational therapy will result in less dependence on social and healthcare resources and less need for institutionalization.”

The Enabling Garden

According to Leos, one area at the Chicago Botanical Gardens that may benefit seniors is an area where they can actively take part in caring for the garden or just walk around to experience the sights, sounds, and smells, etc.

Dubbed the Enabling Garden, visitors can experience an atmosphere that is conducive to their needs. They can walk around freely, smelling flowers, touching plants, observing butterflies, or participating in a group gardening activity. Visitors can take what is called a “sensory tour”, where they can walk around the garden to engage their senses and learn about different plants.

Leos says that the benefits of horticultural therapy for senior patients are numerous, presenting them with an opportunity to exercise their minds and bodies while actively socializing and learning more about nature. “There is significant evidence that gardening improves the mental wellbeing of patients – and everyone. People and plants equals a healing relationship,” she says.

When participating in outdoor horticultural therapy, “light therapy”, or exposure to the sun, can also help to improve patient functions. According to a recent study in JAMA, the use of daytime bright lighting – opposed to being indoors most of the day – can improve the circadian rhythm of seniors and modestly improve symptoms of dementia. In addition, this therapy also helped them sleep better at night.

“In elderly patients with dementia, cognitive decline is frequently accompanied by disturbances of mood, behavior, sleep, and activities of daily living, which increase caregiver burden and the risk of institutionalization,” say researchers of the Royal Netherlands Academy of Arts and Sciences in Amsterdam. “The circadian timing system is highly sensitive to environmental light, and the hormone melatonin, and may not function optimally in the absence of their synchronizing effects. In elderly patients with dementia, synchronization may be [diminished] if light exposure and melatonin production are reduced.”

Researchers found that bright light lessened cognitive deterioration by 5 percent, reduced depressive symptoms by 19 percent, and diminished the gradual increase in functional limitations by 53 percent. Also, melatonin reduced the time to fall asleep by 19 percent and increased total sleep duration by 6 percent, but adversely affected caregiver ratings of withdrawn behavior and mood expressions.

The addition of bright light improved the adverse effect on mood. In combination with bright light, melatonin reduced aggressive behavior by a relative 9 percent. Simply increasing the illumination level improves symptoms of disturbed cognition, mood, behavior, functional abilities, and sleep among group-care facility patients with dementia, according to the study.

Drawing on Beliefs and Memories

Rackner suggests that what was significant to patients before the onset of dementia can still interest them today. She cites the woman who was unable to recall the names of relatives, but remembered how to play the piano as an example of this phenomenon. Touched by the patients’ strong reactions to their surroundings, Rackner observed that discussing the patients’ previous interests with their family members can help healthcare professionals to develop activities that may significantly increase their quality of life. When exposing patients to new interests, caregivers and therapists say that communication with patients and their families is key. If a certain activity seems to engage the senses of a patient – even, just for a moment – the experience can enrich the lives of all parties involved. 

Unlocking Closed Doors

“People with dementia are an especially challenging group of patients for most primary care practices,” says Greg A. Sachs, MD, an Indianapolis-based Indiana University professor of medicine and the chief of the Division of General Internal Medicine and Geriatrics at the Indianapolis-based Regenstrief Institute Inc. However, Sachs believes that when patients are involved in therapies that will help to improve their cognitive functions, their quality of life can also improve. By exercising skills that help them to function independently, these patients may slow down the process of deteriorization.

“Providing excellent care as the illness progresses really takes a team approach and coordination with community-based services and resources, ranging all the way from homemakers to hospice. Most physicians do not have the training, time or staff to provide palliative care to this population,” he adds. As Sachs continues to evaluate the feasibility of incorporating an outpatient palliative care program for patients with dementia into the primary care setting, other community-based services can provide therapists with innovative ways to reach patients with dementia and AD.

For instance, according to the American Art Therapy Association, an increasing amount of aging adults are experiencing the benefits of self-expression through art. They also cite how creative expression evokes a number of positive health benefits in participants who may be unable to verbally communicate their thoughts. For instance, Village Shalom, an Overland Park, Kan.-based alternative retirement community, promotes recreational and therapeutic programming for its Alzheimer’s patients.

Sherri Jacobs, ATR, an art therapist at Village Shalom, says that after she explains the project for the day, it’s not long before participants choose their favorite paint colors and become engrossed in their artwork. “In working with the elderly, it is sometimes hard to get them to express themselves,” says Jacobs. “There are a lot of trust issues in getting the people to share and open up,” she says. But, by using art therapy as an outlet for residents to express themselves, Jacobs leads activities that allow elderly patients to release unspoken emotions, such as grief, loneliness, and depression.

One of the most memorable sessions for Jacobs was when she conducted a class with a group of Holocaust survivors around the time of Yom HaShoah (Holocaust Remembrance Day). She says, “I brought some small boxes for them to decoupage with pictures and stickers, inside and out.” The exterior of the box was intended to represent the individual’s outward self, and the interior of the box was to express the inner emotions and recollections of the Holocaust experience. Jacobs says, interestingly, every single participant put a picture of a key inside their box. “The one thing every survivor had was a key to their house,” she says, “because they thought they would be able to go back home when the Holocaust was all over.”

–– Haley K. Jestice is a staff writer for Therapy Times. Questions and comments can be directed to hjestice@therapytimes.com.