Group advises how to be 'dementia friendly'

By Bruce Dentler and Catherine Ferguson SNJM

Bruce Dentler, who retired after 20 years as a family practice physician followed by a practice focused on geriatrics, works with a Dementia Friendly Spokane team to help faith communities have dementia friendly congregations.

During the last 10 years of specializing in medical care for seniors, what had been his professional concern about providing compassionate care became  a personal concern.

He visited his parents, Mary Lou and Howard Dentler, at a retirement home in Florida two or three times a year. On one visit, he noticed a subtle change in his mother.

Having always been a terrific cook, his mother kept her best recipes in her head. That visit, she left out key ingredients, like the flour in cookie dough, or substituted salt for sugar.

Bruce met these initial observations with denial that she was suffering from dementia. As a pastor's wife, she had always had a gift for socializing, making others feel accepted and participating in church life.

"It was painful to watch as she withdrew from conversations and relationships and couldn't remember people's names," said Bruce, who watched her grow anxious when conversations buzzed around her and then slowly stop connecting altogether.

After a 10-year struggle, his mother died at age 89 of end-stage frontotemporal dementia.

As Bruce became aware in his personal life, he saw that experience repeated in other people's lives. In so many instances, people living with dementia and their caregivers choose not to maintain their connections to their social and spiritual communities.

"Our congregations have, it seems to me, unwittingly, contributed to this situation," he said.

He sees two reasons.

One, most people lack knowledge and understanding about dementia. They have a negative bias and fear of the disease. They lack the comfort and skills to easily approach and maintain relationships with people living with dementia and their caregivers.

In spite of his professional training, Bruce includes himself among those people.

"It is a different experience when it is someone you know and love," he said.

Second, is that institutions, specifically communities of faith, arrange their services, practices and facilities in ways that do not consider the difficulties and needs experienced by people living with dementia.

"This is not intentional neglect, but a lack of sensitivity and awareness in designing and providing those services," he observed.

In fall 2018, Aging and Long-Term Care of Eastern Washington (ALTCEW) and the Inland Northwest Alzheimer's Association with support from Providence Health Services organized community forums to ask people about their awareness of dementia and dementia care and services in Spokane.

Through these forums, ALTCEW learned about needs for further services.

They learned about significant dementia care issues such as the stigma associated with the disease, needs for police and emergency responders to know how to respond to and handle people suffering from dementia, and areas of ignorance from not knowing the 10 early warning signs of dementia.

This led to a work group of staff and volunteers at ALTCEW and the local Alzheimer's Association. This group decided to affiliate with Dementia Friendly America and, with support from a grant, to pay salaries for agency staff time.

A key staff member is Tara Hill-Matthews, the dementia resource catalyst at Aging and Long-Term Care of Eastern Washington.

In February 2020, the Spokane Regional Dementia Friendly Community (SRDFC) initiative was organized. Their progress, projects, accomplishments and works are chronicled in an online biannual newsletter.

One work group felt called to reach out to faith communities who have members living with dementia. The team's mission, adapted from Saint David by the Sea (Florida) is "The spiritual needs of people living with dementia remain untouched by cognitive decline. Our posture toward people with dementia needs to enhance their dignity, personhood, unique stories and purpose. Their purpose has changed, but it has not ended. It is our job and our privilege to remind them that they are a gift from the Creator."

The team, on which Bruce serves, has challenged itself to answer the question, "Is there a way we could help congregations serve and continue to include their members living with dementia and their caregivers?"  

The team has developed some training in dementia education for lay people, including the Dementia Friends program ,which seeks to change the way people think, act and talk about dementia.

While every faith community has its own traditions and culture, the faith-communities team does not claim to know or understand all of those.

The dementia team knows that every faith community has members affected by or living with dementia.

They let people know about information, resources, tools and support that are available in the community.

They also inform congregations about best practices for faith groups, describing what is being done to adapt and be inclusive, answering questions like, "What would a dementia friendly worship service look like?" or "What training and skills would help a home visitation team?"

The team seeks to educate and encourage faith communities in the Spokane region to learn more about this topic.

Bruce said they offer congregations a rack card with information on local dementia resources for faith communities. It invites people to learn about Dementia Friends Training, the Dementia Resource Guide, Spokane County Library Districts "Stay Sharp" toolkits and Dementia Friendly America organization.

Dementia Friendly Washington has a flier and offers training sessions with suggestions for changing the way people think, act and talk about dementia. The sessions discuss common types of dementia, key messages, communication tips, action ideas, resources and support.

In addition, Lynn Swedberg, a Spokane occupational therapist and disability consultant, serves with the Disability Ministries Committee of the national United Methodist Church. She has a flier, Dementia-Friendly Worship Ideas and Tools.

The ideas include using familiar songs, prayers and scriptures, letting people remain seated, giving shorter sermons with stories, acting out stories with props and planning shorter services.

To create a supportive environment, she suggests providing one or more rocking chairs, reducing distractions, providing a calming sensory space, and offering worship buddies and hand holding.

Lynn points out that objects may help people focus—prayer beads, a lap altar, an adult picture book or coloring sheet, a weighted lap blanket, a prayer shawl, fidget muffs, aprons, books or lap pads.

Bruce offered some other tips to help people relate with people with dementia so they can be in the community: 1) be patient, 2) speak at a soft volume, 3) sense another person's anxiety, empathy and discomfort; 4) be relaxed and 5) don't correct what the person says.

Bruce said he and his wife, Ann, are on the visitation team for their church, St. Luke Lutheran in North Spokane.

"We love flowers and often take flowers to those we visit, because we can begin conversations with the flowers, such as talking about the colors," he said.

Bruce hopes more people will participate in the Dementia Friends Training so they better understand dementia and can use their skills to help people remain connected to their congregations.

For information, call 777-1629, email tara.hillmatthews@dshs.wa.gov or visit dfamerica.org or seehttps://www.altcew.org/news-events/news/ or https://www.altcew.org/spokane-regional-dementia-friendly-community/