Grief & Loss in the Context of Alzheimer’s & Dementia

Below is the transcript of a podcast, “Grief & Loss in the Context of Alzheimer’s & Dementia,” recorded by Ann Snowberger, spiritual care director at Judson Park.

Introduction

Welcome to this special series, where the spiritual care director at Judson Park, Ann Snowberger, will discuss topics of interest to family members of someone who is served by HumanGood’s memory support program. 

Today, Ann is going to talk about the intersection of grief and dementia and how to best navigate discussing loss while continuing to support those living with Alzheimer’s or another form of dementia. Let's take a listen.  

Turning Grief into Hope and Healing

Hello, and welcome to this HumanGood audio resource for families and team members. My name is Ann Snowberger, and I serve as the spiritual care director at Judson Park in Des Moines, Washington. 

Our mission at HumanGood is to help older adults live their best lives however they define them. Our programs are designed to help residents pursue engaged and purposeful lives. Immerse™ is HumanGood’s program that supports residents who live with dementia. Immerse™ is person-centered and dedicated to the physical, mental and spiritual world of the individuals we support. Immerse™ is relationship-focused. It gently says, “You are not alone.” Immerse™ cultivates compassion where shared humanity can lead to hope and healing.

Today, we'll explore ways to help adults living with dementia cope with grief and loss. We'll learn how dementia complicates grieving and discuss what it means to immerse ourselves in the present moment to offer support.

Riding the Waves of Grief

I also want to offer a way to visualize the concepts of grief and grieving. Imagine grief as a series of waves — some large and overwhelming, others small and subtle. For a person living with dementia, a large wave might be the loss of independence. Smaller waves might be the gradual fading of memories. But no matter how big or small the wave, undercurrents of emotion are always present. How one addresses the undercurrent of emotions is the grieving process. Immerse™ invites us to come present to the grief and emotional undercurrents of a person living with dementia.

It's important to understand that there is no right or wrong way to grieve. Every person experiences loss differently, and many factors shape how we learn to cope, such as our social histories, cultural backgrounds, spiritual practices and even the nature of the loss itself. So, let's take a few minutes to understand how dementia complicates the grieving process. 

How Dementia Impacts the Ability to Grieve

Research shows that dementia dynamically alters our capacity to process and express emotion. Dementia makes it challenging to access social support, hobbies or any activity that once helped them navigate loss. I thought we could look at some common ways that dementia impacts our ability to grieve loss:

Memory Loss and Time-Shifting

A person living with dementia can experience memory loss and — for example — forget their spouse has died. They may continually wonder where their loved one is or why they haven't come to visit. It's profoundly upsetting for them to learn about their loved one's death over and over — as if they're hearing the news for the first time. 

People living with dementia may also experience time-shifting, where they perceive themselves to be in a different period than the present day. This can lead to frustration, confusion and disorientation, particularly when confronted with new losses.

Challenges with Emotional Expression

Dementia can affect how emotions are expressed. Instead of appropriate tears or expressions of sadness, grieving might appear as agitation, confusion, anger or withdrawal. These changes are devastating for the one living with dementia, and they make it harder for family and team members to recognize the undercurrent of emotional pain that the person is experiencing. 

Grieving is one way we make meaning out of life's experiences for healing, but dementia can limit one's ability to reflect on loss and integrate it into the healing process. When individuals can't make meaning from their loss, it can lead to intense emotional distress. Living with unresolved grief is isolating. People living with dementia can find it challenging to express their need for support.

Gaps in Spiritual Wellness

Finally, dementia can hinder one's ability to connect with personal spiritual wellness practices, beliefs or communities that once brought comfort in times of distress. Spirituality is connected to how we find meaning and purpose in life. Spiritual wellness practices are not limited to religious practices but encompass a variety of activities, such as: 

• Bird-watching
• Walking in nature
• Reading
• Mindfulness
• Meditation
• Sitting in the sun
• Practicing yoga
• Painting
• Listening to music 

Each of these helps nurture the human spirit and promote inner peace. 

Tips for Getting Through Grief Together

Despite the challenges of complicated grief, the Immerse™ program offers hope. Remember, there is no right or wrong way to grieve. Everyone experiences loss differently, and resilience is possible. 

1. Start With Yourself

It might not come as a surprise to hear that the first step in supporting someone living with dementia is to practice self-care. It's easy to neglect ourselves while we're supporting others, but you matter. You matter. Please find ways to be kind to yourself. 

Airlines tell their passengers to put their oxygen masks on first so they don't pass out before they can help the one who is more vulnerable. The same principle applies here. Taking care of yourself means you can be strong and resilient, able and ready to effectively help your loved one who is vulnerable.

2. Find a Meaningful Activity

Now, let's look at ways to enter into shared experiences that say, “You are not alone. You matter.” Here are some activities to enter into the present moment of the here and now with your loved one:

• There's listening to music, where you can play favorite songs and join in by singing or tapping along. The idea is to focus on enjoying the music together without any expectations. 
• Looking through photo albums or picture books is a great way to engage in conversation in the present moment. Enjoy the pictures, and be curious about the thoughts or emotions that naturally arise. 
• Simple gardening activities, such as watering plants or picking flowers, are fun and relaxing. They create opportunities to talk about caring practices that nurture personal health. 
• At Judson Park, we practice mindfulness art, where residents explore their thoughts and feelings through coloring, painting or making simple shapes with clay. These activities focus on the joy of creating things together and sharing our stories. 
• Walking outside or sitting in a park or a garden is a great way to enjoy being together while connecting to the natural world. The beauty of trees, the songs of birds and the warmth of the sun create wonderful opportunities to be present to each other. 
• Another way to connect in the present moment is to watch movies or TV shows that spark laughter. It's fun to laugh together! 

These are just a few ways to enjoy life in the present moment with your loved one, and I'm sure you can think of many more.

3. Consult with Your Resource Network

A common question asks, “Should I tell the person living with dementia that a meaningful person in their life has died?” Since every person and situation is unique, there is no one-size-fits-all answer. Many things should be taken into consideration, such as: 

• Will the person living with dementia remember that the death occurred after being told? 
• How did the person living with dementia handle grief in the past? 

It's really important to discuss the situation with the health care team to ensure everyone is on the same page. 

4. Limit Repetition

In most situations, if it's determined that a person living with dementia should be told about the death of a loved one, it's important to share this information only once. Repeating the news can lead to more pain. I want to close with a story that illustrates this:

Charlotte lives with dementia and memory loss. When her husband, Kyle, died, their son, John, took some positive steps before telling Charlotte about Kyle's death. After consulting her health care team, John gave Charlotte the news when she was calm and rested. This meant she was better able to receive the distressing news. Next, he ensured that he had ample time to sit with her afterward to answer her questions and provide comfort. John and his siblings decided Charlotte might gain a sense of closure by going to the funeral. They stayed by her side throughout the service to help her navigate the experience. 

As the weeks went by, Charlotte forgot Kyle had died. She constantly asked about him and wondered why he didn't come to see her. It was profoundly traumatic for Charlotte to learn again that Kyle was dead and, of course, it broke John's heart too. So, he met with his mother's support team to discuss a plan of care. John decided to protect his mother from more pain. 

So now, instead of telling her that Kyle died, John simply offers, “I'm sorry, Mom. Dad can't be here today.” Then he gently acknowledges how difficult it must be for her to be apart from him. He invites her to share what she misses most. She often says playing cards. “We like to play cards.” So, John takes this cue, and he pulls out a pack of playing cards, and he challenges his mother to a game. She can't always remember the rules, but she loves fanning the cards out in her hands and slapping them down on the table. “Four of a kind!” 

I love this story because it highlights how immersive practices support grieving with dignity. John's approach minimizes Charlotte's distress, acknowledges her feelings and creates meaningful interactions through a familiar and enjoyable activity. 

Conclusion

So, we've covered a lot today. Please know that a transcript is available. I hope you found this information helpful. Remember, at HumanGood, we're committed to supporting you and your loved one. If you have questions or suggestions for future topics, please reach out to the memory support leadership team. We're always looking for ways to enhance our service and better support you.

Again, as Ann said, the memory support team in your community is here to be your advocate. Reach out to your memory support team with any questions, concerns or topics for which you would like further education. Thanks for listening, and we wish you peace on the journey with your loved ones. 

(This has been an educational resource developed by HumanGood's Immerse™ program.)