The True Constant in Dementia Care: A Caregiver’s Story

Constance, a caregiver to her mother Bettie, shares her story with Stephen A. Brunton, MD. Bettie is currently living with Alzheimer’s disease dementia and experiences dementia-related delusions.

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DR. BRUNTON: Hi, I’m Dr. Stephen Brunton, Adjunct Associate Clinical Professor in the Department of Family Medicine at Touro University in Vallejo, California, and I’m also board certified in both family medicine and geriatrics. Today, we’re going to explore the true impact of dementia-related psychosis from the perspective of a caregiver.

In addition to my clinical background in speaking with caregivers of patients who are experiencing delusions and hallucinations in dementia, I can relate to these challenges based on my personal experience with my mother, who suffered from Alzheimer’s disease.

It’s a difficult journey, and today we’ll hear directly from a caregiver regarding her perspective.

I’m privileged to be joined by Constance, who is a caregiver to her mother, Bettie. Bettie is currently living with Alzheimer’s disease dementia and experiences dementia-related psychosis.

We are speaking today on behalf of Acadia Pharmaceuticals Inc. as paid consultants.

Thank you, Constance, for inviting me into your parents’ home and, really, into your world, so that we can better understand the far-reaching effects of dementia-related psychosis.

CONSTANCE: You’re welcome, Dr. Brunton.

DR. BRUNTON: Before we get into the details of your mother’s diagnosis and your role as her caregiver, could you tell me what inspired you to share your story?

CONSTANCE: Sure. Really, it’s my mother who has inspired me. Throughout my life, she has instilled in me and my siblings the importance of helping others when able. We hope that sharing our experience can help someone—anyone—realize that they are not alone.

DR. BRUNTON: Well, thank you. If you would, please take us back to when your mother first starting exhibiting troubling symptoms and ultimately when she was diagnosed with Alzheimer’s disease dementia.

CONSTANCE: Sure. My family and I first noticed changes in my mother’s behavior around 2001. She would get lost after work and could not find her way home. Then slowly, over time, she started having trouble recognizing us. Eventually, she didn’t recognize anyone, except for my father.

My mother was formally diagnosed with Alzheimer’s disease dementia in November 2005. The doctors then confirmed that the delusions that my mother was experiencing was a symptom of her dementia. I was in denial for a long time.

DR. BRUNTON: That’s understandable. How did your mother react to the diagnosis?

CONSTANCE: My mother is a very strong individual, and she really tried to fight her diagnosis, if that makes sense. She tried to keep us comfortable about it as long as she possibly could. Then it came to a point when she could no longer comfort us. Within the last 2 to 3 years, we really haven’t been able to directly communicate with her at all.

DR. BRUNTON: What was that turning point like for you?

CONSTANCE: So at that point we had to take over and accept what was going on. My father and I formed a strong team. We decided that we would do whatever we could to keep my mother comfortable and to keep her at home. We wanted her to continue her activities. So the first thing I had to do was move my family out of state to be close to my mom. That was an adjustment in and of itself.

DR. BRUNTON: Yeah, I’m sure it was. I would imagine the move must have been very difficult for your entire family.

Now I’d like to get back to the idea of the symptoms your mother has exhibited—specifically, the delusions that she has experienced as a result of her Alzheimer’s disease dementia.

CONSTANCE: Of course. Early in my mom’s diagnosis, she believed that I was not her daughter, but rather her sister, Ann. She would call me “Ann” and would introduce me to others as her sister Ann. To keep my mother happy, I played along and allowed her to think of me as Ann.

Some of her more disruptive delusions occur when any of us would try to help dress or bathe her; she claims that she was being assaulted. This causes stress for her. She would cry out and call for my dad and for myself. She would even threaten to call the police.

For several years, these outbursts happened out of nowhere for no apparent reason. As soon as the sun went down, she would start with this behavior. She would yell and scream and cause a lot of distress.

DR. BRUNTON: That must have been very hard for you. I want to thank you for sharing that, Constance. The delusions you described are not uncommon with Alzheimer’s disease dementia. Unfortunately, caregivers are often the target of those outbursts. Since you moved your family to be closer to your mother, you’ve been a full-time caregiver, correct?

CONSTANCE: That’s right. Caring for my mother is something that I promised to do before she became sick. I told her that I’d be there for her when she needed me. I have been blessed to have a supportive husband who has stood by my side and understood that I needed to make my mother’s care a priority. In 2011, I had to stop working full-time, because caring for my mother became my full-time job. But it hasn’t been easy.

DR. BRUNTON: I’m sure it hasn’t. What about you? How have the transition to a full-time caregiver and your mother’s symptoms of dementia-related psychosis impacted your health and your life?

CONSTANCE: To be honest, my mother’s symptoms have taken a great toll on my life. Physically, since becoming a caregiver, I’ve developed multiple chronic diseases. And knowing that there is a family link scares me as well. It’s a conflicting situation for me. I’ve spent many nights crying and feeling overwhelmed. I’ve had to come to terms with her Alzheimer’s and how it will affect the rest of our lives.

Emotionally, it has been very difficult. I’m really sad most days, because I miss my mother; but at the same time, I’m happy that she’s still here. My mother is 81 years old, so we know that she will die with this disease. I’ve come to terms with this, and I struggle with it every day. It’s been the hardest thing I’ve ever had to endure.

But at the same time, I feel blessed that I have been able to fulfill this promise that I made to my mom. I told her that we would take care of her, and my family and I are fulfilling that promise.

It truly takes a village to care for someone who is experiencing delusions when they have Alzheimer’s dementia.

DR. BRUNTON: Well, I really want to thank you again for sharing and telling your story.

CONSTANCE: It’s my pleasure to share our story. If we can help even one family going through this, I know we would have made my mother proud.

Faculty

Touro University
Vallejo, CA

Faculty Insights

Patients with dementia who are experiencing delusions and hallucinations are difficult to care for, often requiring increased attention and energy and potentially leading to increased caregiver burnout.

–Simon M. Sheard, DO