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How this home in Maine is giving normalcy to people with dementia

Posted July 20, 2016, at 11:16 a.m.

The Vicarage by the Sea lies at the end of a winding lane near the coastal village of South Harpswell. Tucked into the deep woods and overlooking the waters of Casco Bay, the former bed and breakfast now provides a safe, home-like environment for eight adults affected by memory loss and progressive dementia.

Don’t be looking here for locked doors, over-sedated residents and mandatory bingo games. Instead, The Vicarage aims to keep residents meaningfully engaged in their world as long as possible — mentally, emotionally and physically — and to meet their changing needs on a day-by-day basis with flexible care plans, regular group and individual outings and a high staff-to-resident ratio that promotes security, spontaneity and personal interaction.

For Pam Siewers of Sedgwick, The Vicarage seems to be the solution to a deep dilemma. The decision to place her husband, Ralph, in a memory care facility was wrenching. A retired pediatric heart surgeon, he developed early signs of dementia about eight years ago. His disease progressed relentlessly to the point that he could not be left alone at all.

“He really can’t do anything now without supervision,” she said. Even with some outside help, her own well-being was deteriorating under the stress of being his longtime primary caregiver. When, reluctantly, she started shopping around for another solution, she discovered that most memory-care units lock their doors to prevent residents from wandering.

“He would have ended up in a locked unit somewhere, walking around in circles,” Pam said. She couldn’t imagine her lively, sociable husband, who loved gardening, golfing and nature, in a setting like that.

At her therapist’s urging, she visited The Vicarage and was immediately drawn to the home’s small size, informal staff and individualized approach to caring for residents. Unlike every other facility she had visited, “I could see him there,” she said. He moved in about four weeks ago, she said, and seems to be thriving.

Normalizing dementia

A private, for-profit facility founded in 1998 and licensed by the state as an Adult Family Care Home, The Vicarage aims to “normalize” the loss of cognitive function caused by Alzheimer’s disease and other progressive disorders, according to co-founder Johanna Wigg. That means separating memory loss and dementia from the more institutional approach, adopted by larger, more mainstream nursing facilities — a model that evolved largely to maximize efficiency and hold down costs — and instead provide a “person-centered” home that treats each resident as a valued member of the family.

“People feel trapped by the medical system. They’re looking for a more palliative model of care for their loved ones — a good quality of care and love and getting their needs met,” Wigg said. “Our emphasis here is on how to make each day and night in each person’s life as meaningful as possible.”

Wigg said many residents and their families are attracted to the natural surroundings at The Vicarage. So why would the doors be locked?

“We are very purposefully not locked,” Wigg said. “It was part of our philosophy from Day One not to trap people. If you go to any memory care facility where the doors are locked, you’ll see people gathered at the keypads, feeling trapped.” The resultant anxiety and stress typically amplifies until a resident is medicated, often to the point of sedation, she said, which in turn can lead to further disorientation and increase the risk of falls and accidents.

Instead of this scenario, the staff at The Vicarage wear small pagers that vibrate when an outside door opens. If a resident is setting out for a stroll, a staff member will simply keep the resident company and make sure he or she comes back safely.

Often, the outing includes a walk along the “freedom trail,” a smooth, wheelchair-accessible pathway that winds through the trees to a comfortable deck with built-in benches that overlooks the water.

“A good walk, outside in fresh air with one person to to chat with — that can make all the difference,” Wigg said during a conversation on the deck. “When they come back, they can sit and relax.” That doesn’t mean The Vicarage never makes use of prescribed drugs to lower anxiety, she said, “but our use of medications is far less than in the big facilities because we can normalize their days.”

In addition to not locking residents inside to keep them safe, the Vicarage cultivates their individuality while fostering a sense of community. Most residents have a roommate and share a bathroom in this cozy house, but personal possessions and even pets are encouraged. Meals are served family-style. Personal schedules, including naps, time spent alone and periods of activity are respected. Activities are scheduled to meet the needs and convenience of the residents, not the staff.

No more transitions

Wigg, a native of Wisconsin and a specialist in social gerontology, said this normalization of the frightening dementia experience is good for residents and families, calming their uncertainty about day-to-day interactions and their fear of the unknown future. And because The Vicarage provides care through the end of life, residents and families are spared the trauma of hospitalization or transition to another nursing facility.

Wigg founded The Vicarage by the Sea in 1998 with co-founder Cheryl Golek of Brunswick, who develops an individualized care plan for each resident and is in charge of meal preparation. The two women live on site, along with Wigg’s 2-year-old daughter, Estella, and interact daily with the other residents and their families. On average, the ratio of staff to residents is 1 to 4, providing a level of individual attention Wigg says is unusual in any facility. Depending on the level of care a resident needs, the cost of living here ranges from $5,000 to $8,000 per month, compared to an average private-pay charge of about $8,200 per month in a nursing home. The Vicarage does not accept Medicaid, but long-term care insurance, veterans’ benefits and other assets can be applied.

During a recent mid-afternoon visit to the Vicarage by the Sea by the Bangor Daily News, residents had returned from lunch at the Fat Boy Drive-In in nearby Brunswick. The mood was relaxed. One man was dozing in the sun on the porch while two women chatted about a missing dog. Inside, some people were watching a movie on the television set in the living room. In a nearby bedroom, someone was just waking up from a nap. Staff activity in the small kitchen promised a simple supper of leftovers after the heavy noontime meal uptown.

A tall, lean man stood at the kitchen table folding a pile of clean dishtowels. It was Pam Siewer’s husband, Dr. Ralph Siewers of Sedgewick. He snapped the towels and matched their corners neatly, stacking them in a tidy pile. When he was through, a staff member offered a jigsaw puzzle, and he sat down to it with interest.

Later, Ralph Siewers sat by the door listening to classical choral music on a tabletop radio. “Handel?” a visitor asked. “Oh, no,” he responded with a friendly smile. “I don’t think so. Not Handel.”

Pam Siewers said her upbeat husband is “finding new ways of being who he is” at the Vicarage. “It’s a great relief to know he’s safe and happy,” she said, leaving her time to tend to her own health and well-being. “It’s also a little lonely,” she added. “But it’s been lonely for the last eight years. He really hasn’t been here for a long time.”

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