Dementia 101 for faith communities
Dementia 101 for faith communities

Recently I was part of a panel discussion with Anne Karoly, Lifetime Theological Education Office director at Virginia Theological Seminary (VTS), about dementia. The panel was for lay and clergy people who minister to older adults in churches, synagogues, institutions, and retirement centers.

We talked about ways to bring people with dementia into our communities by respecting their relationship with God and honoring their feelings, which never appear to diminish even for those with severe Alzheimer’s.

Talking about this issue diminishes its power over us and restores the humanity of those with Alzheimer’s or other forms of dementia. Karoly talked about life as a caregiver while I suggested tools to help bridge the communication gap with people with dementia.

Dementia is sometimes caused by strokes or other physical changes, but the form that is perhaps the most debilitating, and perhaps the most feared, is Alzheimer’s disease. It affects about 1 in 20 people at the age of 65 and 1 in 5 by age 80.

Since this is the population that is growing the fastest in our country and in the world, we need to find ways to include people with dementia in our congregations and communities. We have found that there is an embarrassment or need to hide dementia instead of accepting them as people with failing mental powers.

Alzheimer’s has a dramatic effect on memory and reasoning. However, the ability to feel remains long after a person has lost the ability to understand. One caregiver described the disease as the funeral that never ends because of the losses that continue to occur after the initial outset.

Dementia usually progresses through the same stages of loss that we see among those with Alzheimer’s:

  1. Forgetfulness stage
  2. Confusion stage
  3. Dementia stage

And while this is happening, many with Alzheimer’s will still look like a picture of good health.

How do we reach out to these people and meet not only their physical needs but also their spiritual longing? In her book A Guide to the Spiritual Dimension of Care for People with Alzheimer’s Disease and Related Dementia: More than Body, Brain and Breath (Jessica Kingsley Publishers, 2003), Elaine Shamy challenges us first to look at the meaning of spiritual:

The spiritual integrates and holds together the physical, psychological, and social dimension of life. It integrates these three dimensions into an individual person who is more than the sum of his or her parts. (page 60)

Then she provides this definition of spiritual well-being:

Spiritual well-being is the affirmation of life in a relationship with God, self, community and the environment that nurtures and celebrates wholeness. It is the strong sense that I am ‘kept’ and ‘held’ by someone greater than myself who ‘keeps’ the whole of creation, giving life meaning and purpose. It is the certain knowledge that I am part of that meaning and purpose. (page 61)

Out of this understanding of spirituality, Shamy suggests four tools for ministry with people with a primary dementia illness (69-19):

  1. Principles of communication: Understanding the effects of dementia on communication will help those providing ministry from unrealistic expectations about what is possible and probable. The main purpose is to maintain relationships, realizing that most of the process is one-way. More than words are often needed. Touch is important; also a smiling face communicates much more than a serious one.
  2. Orientation to the present reality: It is important to find a way to reach or communicate with a person in his or her reality. We should avoid pressuring someone to be in our reality.
  3. Affirmation and response to their feelings: Hearing beyond the confusion to listen to the feelings is vital. Share a pain, for example, rather than fixing it from the outside.
  4. Memory cuing: If we can cue the memory, we help the person with dementia back into a community or group where his or her identity if located. Researchers believe that the ability to feel and to respond to feelings remains intact in the person with dementia. How those feelings are accessed can be through colors, smells, sounds, music, voices, and textures.

Older people tell us that spirituality is still an elusive need that their churches aren’t satisfying. We need to be more intentional about finding resources and practices that can help them on their journeys.

Events like Dementia 101, workshops on the spirituality of aging, and classes about ministry with aging people are a part of our work at the Center for the Ministry of Teaching at VTS. For resources, check out the Our Picks collection on aging.

Dorothy Linthicum (@dslinthicum) is an instructor at Virginia Theological Seminary and program coordinator in the Center for the Ministry of Teaching.

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