Written by: Dr Michiel van der Merwe
Article source: JOY! Magazine

What do they understand? How do they experience God? How can we better understand and care for our loved ones with dementia?

A small group of elderly people in the section for those with dementia sits before me, waiting for me to serve them communion. One elderly lady stares straight ahead as I greet everyone warmly. She doesn’t respond at all. I step closer to her and place my hand on her shoulder. Before I could say anything, she says, without any emotion but in a very firm voice, “I believe in Jesus!” That’s the whole conversation. Done.

How do people with dementia experience God?
I wonder anew about the spiritual experience of people with dementia. What do they understand? How do they experience God? This lady was so convinced with her one-sentence testimony. I have no reason to think she didn’t know what she was saying. A person with dementia is more than just someone with a diagnosis of dementia. He or she is a full-fledged human being, like anyone else. A holistic approach helps to better understand and care for them.

What is dementia?
According to Wikipedia, dementia is “a disorder that manifests as a set of related symptoms that usually occur when the brain is damaged by injury or disease. The symptoms involve the progressive impairment of memory, thinking, and behaviour, which adversely affects a person’s ability to function and carry out everyday tasks.”

The greatest mental health crisis of our time
Dementia is often referred to as the “great forgetting” or the “sorrowful disease” due to the impact it has on the person themselves and their family. By 2020, more than 55 million people worldwide were already affected to such an extent that they could not remember enough or think clearly enough to perform basic daily tasks. Karen Borochowitz, founder of DementiaSA, considers it the greatest mental health crisis of our time. It is currently the seventh leading cause of death worldwide.

Starting point
When we reflect on the spiritual experience of a person with dementia, the nature of that person’s relationship with the Lord before dementia set in is of crucial importance. The presence of dementia will not necessarily bring you closer to the Lord. A healthy relationship with the Lord before the onset of dementia will instead sustain the person during this time.

Basic spiritual needs
The spiritual needs experienced by a person with dementia are closely linked to the stage of dementia they are in at a given moment, as well as the spiritual well-being the person had before the onset of the disease. People with dementia often experience one or more of the following spiritual needs:

• A search for comfort regarding their circumstances.
• The meaning and purpose of their current life situation.
• Questions about life, death, and their personal role in it (often including questions about faith assurance and feelings of guilt).
• The need for emotional and spiritual support often increases, especially in light of a feeling of isolation.
• The need to participate in religious practices to experience some measure of comfort.
• A desire for inner peace to alleviate the anxiety associated with their condition.

Tips to address the spiritual needs of dementia patients
The spiritual needs of a person with dementia can be addressed in the following ways:

1. Listen
Participate in their conversations with compassion and patience. Listen to their thoughts, feelings, fears, and memories, and affirm their experiences.

2. Help them remember
Encourage memories of significant life events, values, and beliefs. This can help reinforce their identity and sense of purpose.

3. Practice religious rituals
Utilise familiar religious practices such as communion, prayer, meditation, spiritual hymns, or reading Bible verses.

4. Create the right atmosphere
Spend time in nature or create a pleasant environment with art, music, or photos that resonate with them spiritually. Pets, and therapy dogs in particular, often help the person relax. The focus on the dog can reduce the pressure to maintain eye contact and have a meaningful conversation.

5. Make physical contact
Gentle physical touch, such as holding hands, can convey warmth and emotional connection.

6. Use electronic communication
The value of video clips and video calls from family should not be underestimated.

7. Engage in activities
Use activities like music to evoke memories and emotions tied to their spiritual identity.

8. Identify their needs
Encourage them to share what brings them peace and comfort and focus on that. Recognise that spiritual needs are unique for each person. A person’s understanding of faith and God can also change over time, which should be addressed with the necessary sensitivity.

9. Embrace silence
Your presence with them serves as a reminder that God Himself is present with them.

Challenges faced by people with dementia
• Decline in cognitive abilities: This can lead to frustration. Memory loss often causes embarrassment, for example, when they can no longer remember familiar Bible verses.
• Exclusion from group activities: Religious practices often take place in group settings. People with dementia are often excluded, leading to feelings of loneliness, uselessness, and frustration.
• Emotional reactions: Dementia often leads to a wide range of emotional responses, such as anxiety, depression, and fear about the future. Along with this come questions about life, death, and the afterlife (faith assurance), making it difficult for them to find true comfort in their faith.
• Communication problems: Dementia can impair both verbal and non-verbal communication skills, making it difficult to express spiritual needs or beliefs.

Finding comfort
Addressing these challenges requires a compassionate approach that helps people with dementia find comfort and meaning in their spiritual experiences, especially as cognitive abilities decline. We must “remember to re-member”!

Benefits of religious practices for people with dementia
• Involvement in religious practices can provide a sense of comfort and reassurance. Compassionate engagement can help individuals process feelings of fear, anxiety, and uncertainty.
• Religious practice can lead to a renewed sense of purpose in life, helping individuals find meaning in their lives, even amidst cognitive challenges.
• Participation in religious activities can foster a sense of belonging and connection with others.
• Familiar rituals, prayers, or hymns can evoke memories and reinforce a sense of stability in their lives.
• Religious practice can strengthen hope, promote personal growth, and enhance their understanding of themselves as believers, confirming their faith in God.

Advice for family and friends of people with dementia
Family and friends of a person with dementia have their own journey to navigate. Here are some practical tips:

1. Encourage open communication
Create a safe space for family members to share their feelings, fears, and emotions.

2. Appoint a contact person
It helps to have a dedicated person responsible for the necessary communication between the medical staff and the family.

3. Get involved in support groups
Joining support groups for families of people with dementia can foster relationships with others who understand their struggles. It provides a sense of empathy and shared experience. Contact ADASA if necessary.

4. Engage in family traditions
Maintain family traditions or create new ones that involve the person with dementia, such as sharing stories, lighting candles, or gathering for prayer or meditation.

5. Allow time for reflection
Encourage family members to take time for personal reflection, journaling, or engaging in activities like nature walks, meditation, or art, which can lead to peace and acceptance.

6. Utilise spiritual practices
Encourage prayer, meditation, or other spiritual practices that align with the family’s beliefs. Participating together in these practices can promote unity and support.

7. Make use of counselling
Look for professional counselling or spiritual guidance for family members who may need help processing grief, loss, or anxiety.

8. Celebrate life
Focus on celebrating life and the experiences shared with the person with dementia. Creating memory books, sharing favourite stories, or participating in activities that reflect the essence of the person with dementia can be healing.

9. Respect personal needs
Acknowledge that each family member may have unique spiritual needs. Offer support and understanding and allow space for each to explore their own spiritual journey. Be a listening ear rather than a source of answers for one another.

In conclusion
People often worry about what a person with dementia’s experience of God is. How about an opposite question: How does God view the person with dementia? In Isaiah 49:15 we find a guiding answer: “Can a woman forget her nursing child, and not have compassion on the son of her womb? Surely they may forget, yet I will not forget you.”

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Date published: 30/10/2024
DR MICHIEL VAN DER MERWE – a retired pastor, author, registered counsellor, and serves on the advisory committee of ADASA.

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