When I first started chaplaincy, I would walk out the door with bible in hand and a planned reading for the day 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 that the majority of the patients I saw didn’t benefit from it because they simply couldn’t understand what I was doing due to advanced dementia of some kind. Even if end-stage dementia was not their primary diagnosis, I’d say at least 2/3rds of the people I saw suffered from this. Many could communicate and 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 to them a few minutes ago. Some were truly end stage, confined to a chair or to bed, nonverbal or nonsensical, and having no apparent understanding of what was going on around them. Organically, their brains were slowly dying, leaving them trapped in a world that I didn’t know how to enter.
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 other caregivers often experience when dealing with patients with dementia, as well as other mental disorders, is that we often 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, as well as other severe cognitive disorders, can be challenging but it certainly isn’t impossible. But it requires you to look at spiritual care in ways that perhaps you hadn’t considered. Even though the traditional pastoral care modalities may not be as helpful, there are others that can be very 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. Be mindful though that touch can cause anxiety in some situations, so if a person becomes more anxious or agitated it’s a good sign to stop.
- Familiar Music and Scripture: Playing or singing familiar hymns or other religious songs can be an important source of comfort, even if residents can only listen. I’ve had some patients who are otherwise nonverbal start to hum along with “Amazing Grace” when they hear it. Reading favorite scripture passages or psalms can also resonate with some. Ask family members about favorite hymns and passages. For Catholic residents I often try and see if I can find the Rosary being read on the radio or television, or you can bring it on CD. Even if they aren’t religious, playing some favorite music like jazz or country is good spiritual care.
- Environment: One thing that I really like to do in the summer months is to take my residents outside. As I work in hospice, I’m mindful that few patients ever get to go outside unless a caregiver takes them. Knowing that any good day may be their last, I try to get them outside as much as I can. Some facilities have secure outdoor areas to take residents that are ambulatory to walk outside with assistance, and even if there isn’t a secure area taking a resident who is in a wheelchair or geri chair outside may not be out of the question. Always ask the floor staff before you take anyone outside so you don’t set off any alarms or they end up thinking they had eloped. Just sitting quietly in nature is wonderfully therapeutic not only for my patients but for me 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 that those facts might bring up. Rather than ask where someone went to church, I ask if they liked it. I ask about what they enjoyed doing, or what is important to them. If I know what they liked, I tell stories about those things to trigger those feelings. Asking about facts can make dementia patients anxious when they can’t access those memories, so sticking with feelings is often more helpful.
- “Joining In”: With advanced dementia there is absolutely no reason to try and reorient someone who is confused. While it may seem beneficial to try and keep someone oriented to how the world is, doing so can unnecessarily agitate or frighten a resident. Rather than try to reorient them to the world, join in theirs. I have a resident that consistently thinks that I am a family member whenever I visit. Initially I tried to reorient her to my role, but I soon became one of the family regardless of what I thought. So we talk about “our” family and the things that are important to her about family. Don’t feel as if you are lying – you are participating in a story that is more true to them than what the facts may be.
- Quiet: Facilities can be very noisy places. Between all the call bells going off and overhead pages I often find that every television is often turned on full blast to different shows that are often on just as background noise. Sitting in these environments is often stressful to me, and I can’t imagine what it would be to someone who is confused. Taking the person to a quieter environment or reducing stimulation by closing doors and turning off the television can help to create a calm environment.
As a Chaplain, working with dementia patients can be a source of spiritual discovery for you as well. It disarms us and frees us at the same time. At times you may feel as if you aren’t doing anything but sitting with someone, but that may be all the difference in the world. It will train you to be comfortable with silence and “being” rather than focused on doing, and that is a skill we all need to cultivate.