They knew he loved dogs. So they made his with a soft, furry dog figure sewn right in. It was with him until the end of his days.
It was a handmade quilt, one of dozens created each year by manager-of-team-member- training-and-leadership, Elaine Sullivan and residents and team members (staff) at North Hill of Needham. Sullivan introduced the idea to North Hill in 2013 after a visit to a memory support community in Connecticut. There, residents and team members made quilts as burial shrouds for members of their community.
It was a moving gesture of love and faith, and it inspired Sullivan to launch a program creating quilts for people living with dementia at North Hill. Now, four years later, she and other quilters comprised of staff members and residents in Independent Living continue to gather each Thursday to sew and assemble the fabric mementos.
Confusion and agitation are among many common symptoms of dementia. The disease is a cruel thief, stealing not only memories from those afflicted, but slowly eroding the brain’s ability to interpret sensory stimuli or send messages to vital organs. But long after words are lost or faces are no longer familiar, contact with sensory-rich materials can bring peace and comfort.
Tactile stimulation, whether from an inanimate texture or another’s touch can help with concentration and relaxation, and often can trigger memories. Some memory support communities create “fidget quilts,” small comforters with objects sewn in to keep anxious hands busy and restless minds calm.
Dementia is the sixth leading cause of death in the United States. Over 5 million people are currently diagnosed with Alzheimer’s disease, the most common form of memory loss, but
vascular dementia, caused by clogged arteries, Lewy Body Dementia, caused by a particular kind of protein in the brain, and other cognitive defects also afflict an aging population. Without a medical break-through, 13.8 million people will be diagnosed with Alzheimer’s by 2050, and the cost of care could rise from the current $226 billion to $1.1 trillion, according to the Alzheimer’s Association of America.
Research brings hope, and some forms of dementia can be delayed or reversed, but right now, in 2017, a skilled, loving environment that provides structure, support and lots of activity is the best defense against the ravages of the disease.
The quilts contribute to that environment at North Hill, not just because they provide stimulation to a failing brain, but because they are created and delivered with an abundance of love and care. People with dementia lose much of themselves, but they never forget how to give or get love.
Sullivan’s program also helps family members and caregivers cope with the disease. Often, family members feel helpless watching their loved ones fade deeper into themselves. It’s a comfort to see someone you love become tranquil simply because they have something dear to hold onto, and a memory triggered brings genuine joy.
“This is a lovely program,” says Tom Weiss, whose wife Aurice is the recipient of a quilt. “Elaine asked me my wife’s favorite color and I told her yellow. Next thing I knew there was a package outside my door with a yellow quilt for Aurice. She’s always cold, and now she has the quilt to keep her warm.”
Sullivan’s program, like others throughout the country was met with enthusiasm and grew quickly, especially among Independent Living residents at North Hill. “Our goal for the first year was to create 16 quilts. We made 50, she adds with a satisfied smile.” In fact, the sewers have become so prolific that the program has extended to include recipients in North Hill’s Enhanced Independent Living Community, Vista Terrace.
The pieces are personalized to suit the recipient. Aurice loves yellow and blue, so those are the colors of her quilt. A gentleman loves to go camping; his quilt has elements to remind him of his times near the lake. The fabric comes mostly from donations, but the program also self-funds by selling small hand-made lap quilts in North Hill’s gift shop. Sullivan, a quilter since
High school even presented her father with a personalized quilt soon after he entered memory support care at North Hill. He kept it with him always.
Vista Terrace director, Seth Peters finds the program invaluable. “This has been a wonderful program for these residents with many tangible and intangible benefits, including connecting them with their peers in the greater North Hill community, and also providing them with an item that brings true comfort.”
Remarkable strides have been made in dementia research since 1906 when Dr. Alois Alzheimer first diagnosed his “peculiar disease.” While there is yet no prevention or cure for Alzheimer’s, an understanding of the “plaques,” and “tangles” that form in the brain as a result of non-conforming proteins opens a promising path to prevention.
Genetics play a role in risk, and while most people diagnosed are 65 years or older, over 200,000 people in the U.S. who currently have Alzheimer’s experienced an early onset. Some medications work for a while in about 50 percent of the people who take them, but eventually the disease prevails.
Still, most researchers believe that prevention and cure for dementia are on the immediate horizon. In the meantime, it is the art of human care, the gentle nudge, a kind word, a special something to hold onto that provide meaning and purpose for people with memory loss and their families.