By BETSY TAYLOR
Patience, active listening and an observant eye are three of the tools that the Rev. Cindy R. Wallace uses in her work ministering to patients with dementia. The Baptist minister is chaplain manager for AMITA Health Alexian Brothers Behavioral Health Hospital in Hoffman Estates, Ill., which has three geriatric units that treat patients, including those with dementia.
Rev. Wallace will lead "Spiritual Care Interventions for Persons with Dementia," a CHA webinar at 3 p.m. Eastern on Dec. 5. It's free for CHA members and $25 for nonmembers. Rev. Wallace spoke with Catholic Health World about the spiritual well-being of patients experiencing cognitive and physical decline.
What are some of the differences in ministering to a patient with dementia compared to other patients?
Especially in the end stages of dementia, people start to lose their ability to communicate clearly. They lose their ability to pick the right words or to be able to make sense in a sentence or conversation, or to verbalize. Sometimes, I see that caregivers either stop talking to them and talk about them, or talk to the patient's loved ones instead of the patient. There's a lot of isolation that happens at that point because people don't know how to engage. It's uncomfortable, uneasy, it takes a lot of time.
The dementia patient's brain takes longer to process the words you're saying to them. You have to give them time to process before you can even expect them to communicate with you. I see these patients end up being voiceless, literally. They end up not being heard because nobody takes the time to really listen anymore. A lot of patients end up internalizing and don't speak much at all.
How do you counteract that?
We see inpatients in spirituality groups, twice a week for an hour. Those groups help me when I later spend one-on-one time with a patient. I seek cues about what world they're in, listening to what they're talking about and trying to decipher what needs they're trying to communicate. Whether the words make sense or not, everyone is trying to communicate something when they open their mouths to speak or in their facial expressions. I try to pay attention to their body language, their expressions. I try to have a normal conversation, speaking slowly, being patient, trying to give them time to try to answer. And then when they answer, going along with the conversation they're trying to have with me.
You also have to look at more than one aspect of care. Alzheimer's takes a physical toll on the body, and many of the patients with dementia have comorbidities, like diabetes or Parkinson's or Huntington's that also do physical damage to their bodies. Sometimes trial and error is effective, to determine if they have a physical need that needs to be met, or want someone to hold their hand, or perhaps they want to take a wheelchair ride down the hall to look at photographs on the wall.
I have the conversation they want to have. If I ask: "What's important to you?" and they start talking about their parents, or their childhood, or going to a wedding, something that may not really go along with the question I asked, I stop and I enter into their world. "Tell me about that, tell me about that event, tell me what your mom was like."
If you have that conversation, you usually get a good bit of information out of someone who otherwise may not really communicate with anyone for the rest of the day.
How do you address the emotional impact on family members of a loved one's cognitive decline? What about a situation such as when a person's daughter is in the room and the patient is asking for the daughter? That can cause a family distress.
It is very stressful for the family members. One thing I tell family members is to try to remember that although the person is in their 70s or 80s, in that person's mind that they may be in their 30s or 40s. So, when they're asking for their daughter, they're looking for a baby or a little girl. When their daughter comes, they may see instead their sister or their aunt.
Family members need to grieve, to acknowledge that this is a loss. I remember one daughter who started calling her mother by her first name. "Well, Betty, how are you today?" And it's a very different conversation. If you're able to do that, you're still able to connect, maybe not as mother and daughter, but you still are able to connect.
The patient is not trying to be hurtful. It's not personal; it's just where their mind is right now. Sometimes, if you show the patient a picture from earlier in life, they recognize the people. A patient may remember their spouse from a wedding picture, but not recognize their spouse when the person is in the room. Patients can also go back and forth between moments of lucidity.
It sounds like what works for one patient may not work for another patient. How do you adjust?
I try to determine what's important to the individual. I had a patient who used to work in a pizzeria, she ran a restaurant for most of her career. When she would get anxious she'd go back and forth from the nurses station to the common room taking pizza orders. She'd walk up to the nurses station, to the counter, and ask if the pizzas were ready.
If you asked her, "Did you work in a restaurant?" she'd tell you, "I'm working right now."
"Oh, you know what? You are. Is it time for your break? Can you sit down and talk to me?"
She might respond, "Oh, I don't know about that, I have all these customers."
She would have the entire common room convinced they were having pizza that night for dinner, which was funny for the rest of us, and also a difficult thing to explain when dinner came and it wasn't pizza!
For her, it was obvious that (work) gave her meaning and purpose, and it gave us something to talk about: "What did you like about working in the restaurant? Was it a family restaurant?"
I got her backstory about coming from a long line of strong women, about how her father died in a war and how both her mother and then she made money to support their kids. Patients can still tell you who they are, if not verbally, then in their actions.
How do you connect that to the spiritual care you're providing?
For me, it's about the dignity of the person and focusing on the fact that they are a person with a history, a family, meaning and purpose in this world. The spiritual care is to take the time to get to know who that person is. What is it that's important to them? What has given them meaning in life? And then to be able to share that information with the rest of the staff, in patients' medical records, in staff meetings and in interdisciplinary teamwork, so we all see them as a person with a story. I want to give that personhood, that sense of self, back to them.
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