This article first appeared in the St. Louis Beacon: July 8, 2008 - Jeannie Jacobs' aunt was always independent. She lived in a convent, worked as a teacher, did all her own carpentry work. Jacobs was surprised when she heard her mother received calls from her aunt about six times a day with questions about everyday tasks, such as how to unlock car doors.
Jacobs' aunt was in the beginning stages of Alzheimer's disease -- a progressive, neurodegenerative disease of unknown cause that ultimately leads to death.
Reluctant to spend her sister's savings on an expensive assisted-living facility, Jeannie Jacobs' mother took on full responsibility for her care. As her sister's memory continued to decline, Jacobs' mother began to loose patience and fights erupted between the two sisters. Jacobs knew she needed to find a way to provide care for her aunt without overburdening her mother.
Jacobs found the answers she was looking for in Memory Care Home Solutions, a not-for-profit organization that works with caregivers to improve and extend the time people suffering from Alzheimer's disease are able to remain in their own homes. Specialists with Memory Care make house visits to assess each home environment and then to give hands-on, customized training to help caregivers transform their homes into safe, enriching environments for friends or relatives with memory loss.
Memory Care also provides caregivers with tactics to reduce the inevitable stress that comes from taking such an emotionally and physically demanding task. It promotes the independence of people with Alzheimer's and other forms of dementia. Alzheimer's destroys nerve cells and brain tissue and leads to the build-up of plaque between nerve cells. The plaque blocks the transmission of cell-to-cell signaling. It is these signals that give rise to our thoughts, feelings and memories.
"It is important to exercise connections in the brain," explained Lisa Baron, founder and executive director of Memory Care Home Solutions, "because once they are destroyed, they cannot be reconnected." Continuing to perform familiar activities for as long as possible helps maintain brain connections. Memory Care encourages caregivers to use assistive devices such as automatic faucets, written reminders and picture labels to help people with dementia continue their daily activities even after the onset of Alzheimer's.
"We want to keep the patients in a home environment as long as possible," says Dr. William Peck, director of the Center for Health Policy at Washington University.
"For people with Alzheimer's and dementia, staying at home is good for a number of reasons," Baron says. "Therapeutically, it is best for people with dementia to be surrounded with familiarity. When they are at home they are surrounded by the people they know, the items they know and the floor plans they know."
It also can be significantly less expensive to stay at home. According to the Alzheimer's Association, as many as 5.2 million people in the United States are living with Alzheimer's. That number is expected to triple as baby boomers age. Hospital visits and institutionalization of people with Alzheimer's and other forms of dementia cost Medicare, Medicaid and business more than $148 billion each year. Memory Care works to extend the time that people with memory loss remain at home, rather than in an institution and reduce their hospital visits. The organization is not-for-profit and determines the cost of its services using a sliding scale based on the caregiver's income.
Baron is most interested in improving the quality of life of those living with Alzheimer's, an ultimately fatal disease, and decrease stress and frustration of their caregivers. Alzheimer's is a terrible disease to live with, but ultimately it is the caregivers who must watch the decline of their loved ones.
Memory Care seeks to help caregivers find meaning and comfort in the "new normal" of their loved ones disease. Lisa Baron was inspired to create the organization in 2002 after witnessing her father-in-law, Charles Baron, care for his wife with Alzheimer's.
"He found quality of life moments where few others could," Baron said. When his wife's Alzheimer's had progressed to the extent that she was only capable of lying in bed and staring at the ceiling, he taped drawings their grandchildren created to the ceiling providing a bit beauty in all their lives.
"Time at home is special and valuable and can never be recaptured," Baron said. Baron has translated this goal into practical solutions for many St. Louisans. Jacobs reports that with the help of Memory Care, her mother could cease to be an overburdened aid and "start being a sister again."
Memory Care makes follow-up calls to check up on the caregivers. Dr. Harvey Glaser, who is helping to care for his mother with Alzheimer's, explained that the follow-up calls are especially important because Alzheimer's is a progressive disease.
"Eventually our solutions will not work as well, and we will need to come up with something else," he said. His mother is still able to live on her own in an assisted-living community with the help of an electronic alarm that reminds her to take her medications and other devices recommended by Memory Care.
Baron points out that for every patient there comes a time when their Alzheimer's progresses to the extent that it may no longer be best for them to remain at home. She works, however, to improve and to extend that time they can stay there.
Rachel Machefsky is an intern for the St. Louis Beacon.