Dementia-inclusive guidelines for faith centres help foster all aspects of well-being

When Matthew Dineen’s wife, Lisa, was diagnosed with early onset behavioral variant frontotemporal dementia in 2013 at the age of 43, the couple and their three children were shocked and devastated. Lisa moved into a long-term care home shortly after her diagnosis. Dineen, who lives in Ottawa, had been involved with dementia advocacy before Lisa’s diagnosis and, after her diagnosis, he was a driving force behind the creation of Canada’s national dementia strategy. He also became a member of Dementia Advocacy Canada (DAC), a grassroots group of people living with dementia and care partners.

As Dineen worked to champion, advocate for and support Lisa, he became aware that while doctors and caregivers were addressing her physical well-being, another very important part of who she is as a person wasn’t necessarily being acknowledged. As practicing Catholics, the couple often turned to their faith to guide them through life, but after Lisa’s diagnosis, Dineen found that many places of worship in Canada were not particularly dementia-aware.

When Susan Rae, a DAC member from Whitehorse, reached out to the organization for information on how she could make her local church more accessible to people with dementia, Dineen realized there were no current standardized guidelines for faith centres that wished to better serve the dementia community in Canada. So, in the spring of 2019, Dineen began to write a set of dementia-inclusive faith centre guidelines to share on the DAC website. For guidance, he largely turned to other countries including the United Kingdom and the U.S.

“There are no unified programs or guidelines in Canada,” Dineen says. “For Lisa, even from a young age, church was like a second home. Why should people be made to feel like they don’t belong when they have dementia? Being dementia-friendly is really about being valued and being allowed to participate in the religious community in any way they can.”

Dineen is exploring how faith centres can reduce the stigma around dementia, clearly indicate that members with dementia are welcome at services, better communicate with people who may have trouble with memory and language, and offer personalized support to people with dementia and their caregivers. In working on these guidelines, Dineen has sought the advice of experts from around the world, who have helped him to identify strategies to assist faith leaders to make their centres safe and healthy environments for everyone.

Inclusivity within places of worship

Dementia inclusion in the United Kingdom is a bit further ahead than it is here in Canada. Charlotte Overton-Hart, an associate with Livability, a British disability charity that connects people with their community, says that about one in five churches in the U.K. have explicitly mandated measures to support parishioners with dementia and their caregivers. Within a church or other place of worship, this may mean ensuring that any signage can easily be interpreted by members with dementia and that buildings are physically accessible. It also includes specifically inviting parishioners with dementia and their caregivers to dementia-inclusive events like afternoon teas or coffee groups.

Overton-Hart differentiates between faith centres that are dementia-inclusive (taking measures to integrate those with dementia into the faith community) and dementia-specific (creating programing directed specifically at those with dementia), noting that people may appreciate one approach over the other depending on their individual circumstances. There’s room for both, and centres should offer as many options as possible to be truly dementia-inclusive.

“Part of it is about articulating an invitation to people living with dementia so that they feel particularly welcome,” Overton-Hart says. “If there’s a service or a lunch club that specifically states it is dementia-inclusive, people may feel encouraged to keep coming as a regular member or even to come in for the first time.”

Creating a sense of belonging

Being overtly inclusive is important, but places of worship also have a responsibly to not just include people with dementia, but to make them feel like valued members of the community. Many care experts already agree that a genuine sense of belonging created through meaningful relationships can be hugely beneficial to a person with dementia’s well-being. Since many people with dementia find themselves lonely or isolated after their diagnosis, places of worship can provide both practical human interaction as well as a deeper sense of spiritual belonging.

Professor John Swinton, a well-respected theologian, registered mental health nurse and the chair in Divinity and Religious Studies at the University of Aberdeen in Scotland, says that faith communities have a tremendous opportunity to practice the core tenants of their faith by going out of their way to embrace members with dementia. Swinton says this can be done by emphasizing elements like music and touch during services, but faith leaders should also reinstate the often-forgotten practice of reaching out to those with dementia via personal visitation.

“Going out and visiting people is just as important as drawing them in,” Swinton says. “So many people, particularly with advanced dementia, are living in care facilities and are not able to get to a formal service. If you have a structure where people from the church or faith centre formally visit people, it reconnects them with the community. That’s a tremendous gift for people to feel like they haven’t been forgotten.”

Inclusion through liturgical vestments

For some people living with dementia, the key that unlocks their connection to their faith might not be the words written in a book or spoken at a service, but something more visual or tactile, like a pastor’s stole or a rabbi’s tallit. With this in mind, Lynda Everman, author, editor and founding member of ClergyAgainstAlzheimer’s, and her husband, Don Wendorf, have embarked on a project in which Everman crafts liturgical vestments, like stoles and tallit, for clergy to wear to signify their dedication to dementia inclusion. They call it the “Alzheimer’s stole ministry and tallit initiative” and their work is documented in their book Stolen Memories: An Alzheimer’s Stole Ministry and Tallit Initiative.

The colourful garments can be individualized to reflect the religious leader’s own memories and touchstones while also increasing awareness around the importance of dementia inclusion. When clergy visit with people with dementia, the garment can spark stories and help develop connections.

Since 2018, Everman, who is based in Birmingham, Ala., has made almost 100 personalized stoles and tallits. She encourages other faith communities to start making them as well to spread the message of dementia inclusivity.

“To me, fabric does hold memories,” Everman says. “When clergy wear their Alzheimer’s stoles and [tallit], it sends a message of support to families facing dementia. It helps bring dementia out of the shadows so that we can talk about it and take action to mitigate the challenges posed by this difficult disease.”

When words fail

As a long-time chaplain in American long-term care and hospice settings, Kathy Fogg Berry has seen first-hand how spirituality can bring meaning to the life of a person living with dementia, even if that person no longer has the ability to express that spirituality in words. Fogg Berry’s book When Words Fail: Practical Ministry to People with Dementia and Their Caregivers is a guide for faith leaders looking to offer person-centred spiritual care.

Fogg Berry recommends that care facilities assess the spiritual needs of residents so that they can provide personalized services — be it prayer, theological readings, rituals, or spending time in nature — to make sure the person’s spiritual needs are being met even if they’re unable to articulate those needs. Even if the person is no longer verbal or able to remember certain things, the recognition of their faith can be very valuable.

“Our faith transcends words, you don’t have to use words to feel it or express it,” Fogg Berry says. “People know when you’re present with them and when you’re assuring them of God’s presence with them.”

Through connecting with these experts around the world, Dineen has learned that the way people connect with their faith communities is complex. He hopes to publish a set of dementia-inclusive guidelines for places of worship in Canada on the DAC website later this year.

“We are spiritual beings as much as we are physical beings,” Dineen says. “We are connected to something greater than ourselves. Some people find that in the environment, for others it may be religion, but the spiritual part of the person is always there. And that’s why this is so important.” [ ]