August 15, 2009

CHICAGO – Karen Koch's husband, Fred, has Alzheimer's disease and follows a strict daily routine. While medication helps to slow the progression of the disease for Fred, falling out of routine can mean trouble.

"Fred can make his own breakfast and lunch, and I don't interfere. It's important for him to do those things as part of his routine. But if you ask him to do something out of his routine, he gets a blank look on his face. That's how I know there's something wrong," said Koch.

Koch is her husband's full-time caregiver, and they lead a quiet life. "I'm happy that he does not have to go to a nursing home, like so many of our friends. But on the other hand, it's hard to realize that Fred is my husband. We don't have conversations," she said. "Sometimes it's hard for me to live with the same thing every day."

Karen, 71, and Fred, 72, are members of Immanuel Lutheran Church, St. Paul, Minn., a congregation of the Evangelical Lutheran Church in America (ELCA).

Fred was diagnosed with Alzheimer's eight years ago.

He attends "The Gathering" – a time when older adults struggling with memory loss gather one day a month for social interaction, meal sharing and therapeutic activities under the leadership of volunteers from the congregation. Two other ELCA congregations host The Gathering – Augustana Lutheran Church and Salem Lutheran Church, both in St. Paul.

"Fred thoroughly enjoys The Gathering," Koch said. Since the progression of Alzheimer's is somewhat slower for Fred, he feels like he can be a caregiver to others there, she said.

The time Fred spends at The Gathering is an opportunity for Karen to have respite from her caregiving responsibilities. "I don't have to worry about where he's at, and it gives me a chance to run errands and have a little time to myself."

Programs like The Gathering "change the quality of life" for people, from the participant and caregiver who benefit from the program to volunteers and staff that make it all happen, said Carolyn Klaver, RN, director of The Gathering at Lyngblomsten, St. Paul.

The Gathering was developed by Lyngblomsten – one of 300 Lutheran social service organizations that participate in Lutheran Services in America (LSA). LSA serves more than 6 million people annually in the United States and Caribbean.

The Gathering started in 2000 because there was a need to give respite to caregivers, Klaver said. Since then the State of Minnesota has honored Lyngblomsten for its innovative way of helping to meet the needs of the elderly.

The Gathering takes place in a Lutheran congregation because the church provides a more comfortable space than some institution, said Klaver. The Gathering also relies on the work of volunteers from the congregation to help run the program.

"The volunteers are phenomenal. Some are professionals – lawyers, engineers, retired doctors, nurses, social workers and physical therapists – who want to give back. Many of them are inspired to volunteer because they have been exposed to someone with memory loss or had once served as caregiver themselves," said Klaver.

Diana Burrow is a volunteer at Lyngblomsten. "I have a passion for working with seniors. I've been in the corporate world with a communication and management background, but I wanted to do something where I could give back," she said.

Ralph Myhrman is also a volunteer at Lyngblomsten. "I lost a brother to Lou Gehrig's disease, and I saw the wear and tear on his wife who cared for him. When he passed away, I knew of the hardship that my sister-in-law went through. Anything I can do to make things easier for the caregiver, I want to do. That's why I volunteer." Myhrman has been retired for 22 years and has been volunteering at Lyngblomsten for the past four years.

Lutherans examine programs to help people stay in their homes longer

For more than a year LSA has been examining social service programs and models designed to help people live in their homes longer, with the right kind of support, as people age.

LSA's Aging in Community Initiative is funded in part by Thrivent Financial for Lutherans – a Minneapolis-based not-for-profit financial services organization serving members of the ELCA and other Lutheran church bodies.

Under its "Aging in Community Initiative," LSA is testing programs to help Lutheran agencies start programs like The Gathering, which has been replicated in Pennsylvania and Wisconsin.

"The Gathering is meant to be a place for the individual with early- to mid-stage memory loss to have a safe and social experience, respite for the caregiver, and it gives volunteers the opportunity to serve their neighbors," said Kim Biletz, RN, assistant director of The Gathering iberty at Home, Ambler, Pa. Liberty works with Reformation Evangelical Lutheran Church, Media, Pa., to host The Gathering. Reformation is a congregation of the ELCA.

Biletz said participants in the program receive individual attention and have an opportunity to socialize and participate in activities that strengthen large and small motor skills – activities they may not be exposed to at home.

LSA has identified other models and programs designed to meet the need for effective, low-cost ways to help people remain in their homes longer and provide respite for caregivers.

Models include "Caring Together" – a plan that invites congregational volunteers to visit homes of aging individuals for companionship, social interaction and practical support while caregivers have some respite; "Caregiver University" – a six-module curriculum that prepares people for the caregiver role; "Lutheran Caring Community" – an individual-centered model that links volunteers with service opportunities and connects those receiving services with opportunities to serve others; and "Care Management Solutions Volunteer Care Team Program" – congregational volunteers partner with professional social work staff from Lutheran social ministry organizations to provide enhanced care management.

LSA is currently "examining each of these emerging, promising models, with an eye toward scaling them across the broader Lutheran social ministry system in order to strengthen the system's collective capacity to meet the critical need for effective, low-cost ways to help people remain in their homes and communities as they age," said Cynthia Osborne, LSA vice president of strategic initiatives and program development, Baltimore.

Information about LSA's Aging in Community Initiative is at http://www.lutheranservices.org/aging_in_community_initiative/, on the Web.

ELCA News Service