Advanced Dementia and Pastoral Care

By: Jim Patton

When I first started chaplaincy as a seminary student, I would arrive at the hospital or senior care unit with a planned scripture reading for all my patients.  That lasted about two days.

The reason was not that I gave up or got lazy, but rather that I quickly found most patients didn’t benefit from it because they simply couldn’t understand what I was doing due to advanced dementia. Many patients could talk with me but lived in a world of their own. They would often misinterpret their environment, and in many cases couldn’t remember what I had just said a few minutes ago. Some were truly end stage, having no apparent understanding of what was going on around them. They were trapped in a world that I didn’t know how to enter.  As a young seminarian I wasn’t prepared and often went home feeling inadequate as a spiritual caregiver.   

That’s what makes dementia and Alzheimer’s Disease so tragic. A person can otherwise be relatively healthy, but as their brain deteriorates it can seem as if they are lost to us already.

The difficulty chaplains and caregivers often experience when dealing with dementia patients is we rely heavily on verbal communication. Seminary doesn’t prepare you to preach to an audience that can’t hear or understand you. It can at times feel as if there is a chasm between you and the other that you don’t know how to cross.

Working with people with advanced dementia requires you to look at spiritual care in ways that perhaps you hadn’t considered because the traditional pastoral care modalities may not be helpful. 

Touch: Comforting touch and holding hands can be very helpful for patients with dementia. Many residents only receive touch when they are being dressed or bathed, and this can be a traumatic experience for those with dementia. Providing a calm, friendly touch can be extremely beneficial and provide a sense of reassurance and grounding. You may see that some residents will seek out other residents for that touch – it’s that important to them. 

Familiar Music and Scripture: Playing or singing familiar hymns can be an important source of comfort, even if residents can only listen. Some patients who are otherwise nonverbal may start to hum along with “Amazing Grace” when they hear it. Reading favorite passages or psalms can also resonate with some.  Even if the patient isn’t religious, playing some favorite music like jazz or country is good care.

Environment: One thing that I really liked to do in good weather at the hospital was to take patients outside with supervisor permission.  As I worked in hospice, I’m mindful few patients ever get to go outside unless a caregiver takes them. Just sitting quietly in nature is wonderfully therapeutic not only for a patient but for the caregiver as well.

Feelings: Emotional memory tends to be much more persistent than concrete memory. Rather than be focused on facts – what they did for work, names of children, where they went to church – focus on the feelings around the facts.  Rather than ask where someone went to church, I ask if they liked it. If I know what they liked, I tell stories about those things to trigger those good feelings. I had a long-term dementia patient consistently think I was a family member whenever I visited. Initially I tried to reorient her to my role, but once I embraced her feeling of family we simply talked about “our” family and the things that were important to her.  Participating as family brought her great care and joy on her face.  

 

I encourage those of you with a loved one with Alzheimer’s or dementia to consider some of these spiritual care approaches. As we collectively recognize World Alzheimer’s Day, we encourage our community to raise awareness and to challenge the stigma that persists around Alzheimer’s disease and all types of dementia. We appreciate you being an ally alongside Christian Care.

Learn more about Christian Care Communities’ approach to memory care: Memory Care – Christian Care Communities