Building a dementia-friendly community and raising awareness about memory loss disorders like Alzheimer’s disease is a team effort. Alzheimer’s Orange County spoke to local nurse Melinda Meyer, BSN, CCRN, to get a nurse’s perspective on Alzheimer’s disease and what others—including those in the healthcare field—should know about dementia and those affected by it. Read our Q&A with her below.


Alzheimer’s disease has been described as a family disease. Why do you think that is, and how does it apply to those living with the disease?

Alzheimer’s disease has been described as a family disease because the person that has the disease isn’t the only one affected. It has a ripple effect throughout the entire family unit. It can transform the most independent person into an entirely dependent individual. The family needs to adjust their routines, lifestyles, environment, and possibly even their living arrangements to accommodate the manifestations of the disease. When someone starts to have cognitive changes, their family begins to slowly grieve the person they are losing.

The loved one with Alzheimer’s may not be able to recall memories you have with them, either recent or in the distant past. They may eventually forget how you are related to them. They might have difficulty remembering your name. It is heartbreaking to think that a loved one may someday not remember that you are their son/daughter/grandchild/niece/nephew or that a parent may forget the very name they gave you. That can be hard to cope with for the entire family. Advanced planning and an adequate support system are essential for those living with the disease and those that care for them. As the disease progresses and the need for additional assistance grows, caregivers can experience new or more intense mental, emotional, physical, and financial difficulties. That can result in a  decline in the caregiver’s overall health, which is why caregivers must remember to care for themselves throughout the journey. Remember, you are just as important as your loved one.

Before your loved one had Alzheimer’s disease, what was your perception of Alzheimer’s or dementia in general? How has it changed since then?

I can clearly recall my first experience with a person with Alzheimer’s disease. I was in 6th grade, and I had just come home from school when my best friend called me and whispered, “There’s an old man at my house. He said he’s lost and doesn’t know where he lives.” Being a young and highly naïve 11-year-old girl, I thought she was joking. How could someone possibly forget where they lived? I also thought the idea of a stranger knocking on your front door was terrifying! I was worried for her safety and glad that her father was home with her. She later called me and said that the man had Alzheimer’s disease and had wandered from home. Luckily, they were able to return him home safely. Reflecting on that experience as a young girl, I feel foolish. As I grew older, not only did my perspective of the disease change, I became connected to it. Two of my grandparents were diagnosed with Alzheimer’s. My perception of the disease changed even further when I became a registered nurse and started caring for patients with Alzheimer’s disease. I know now that that man was not a threat. He may not have even been very “old” outside of the perspective of two young girls. He was exhibiting a very common and dangerous manifestation of memory loss with Alzheimer’s disease—wandering. My family became very familiar with this during my grandmother’s journey with Alzheimer’s.

It is important to understand that each person can display signs and symptoms differently and at different times. The disease has multiple stages, and the rate that one will move through them is unpredictable. I have cared for some patients that lived with the disease for years, yet I would never have known they had Alzheimer’s if their family member or medical record hadn’t revealed the secret. Conversely, I have cared for others more recently diagnosed but had already progressed to advanced stages of the disease. Regardless of what stage your loved one is in, monitoring their safety is of the utmost importance.

Being a nurse who’s encountered people with Alzheimer’s has been…

I have never cared for a patient with Alzheimer’s disease without remembering my grandmother and grandfather. Though it saddens me that my family and grandparents were affected, I am grateful to have had this personal experience because it allows me to connect with my patients and their families on a deeper level. If I did not understand the disease in this capacity, I wouldn’t be able to offer my patients as much as I can now by having this perspective. In healthcare, we often define people by their disease, but this is a fallacy. I don’t just see these individuals as just an a person with Alzheimer’s. I can respect that they have much more to them than that. I enjoy it when the family members share information about the patient’s past. What did they do for a living? What were their favorite pastimes or hobbies? Knowing the answers to these questions allows me to visualize the patient as a whole person and be a better nurse as a result.

Another key thing I learned is just how much of a toll this disease can take on the family members/caregivers, even during the early stages. They seem completely overwhelmed because the concern for a loved one is constantly at the forefront of their mind, which can be all-consuming. I try to build a good rapport with these caregivers so they know they can trust me so they can take a much-needed break. If their loved one is in the hospital, I would encourage them to go home and take time for themselves to feel refreshed and ready when their loved one gets released.

Being a granddaughter with a loved one with Alzheimer’s was…

My paternal grandmother and maternal grandfather both had Alzheimer’s disease, which progressed to advanced stages towards the end of their life. It was a trying time for our entire family. It was sad to see our loved ones change from who they once were and daunting to think of who they will become. It was weird to miss someone who was sitting right next to you. Seeing my grandfather slowly losing his wife, with whom he had spent an entire lifetime, was distressing. I remember his guilt when she wandered outside the home, thinking it was his fault, and how that shattered him. It was sad for me to see my parents grieving the loss of their parents as the symptoms progressed, and it was heartbreaking when our loved ones could not recognize us by name or face. Everyone in contact with my grandmother became “Remi,” the name of her cat, and we were okay with that because we knew how much she loved Remi!

At the same time, I feel very lucky to have had time to cherish some extra moments with my loved ones. Too often, people are taken from this earth suddenly and without warning. When someone you care about gets diagnosed with a long-term, progressive disease, it changes something in you. It changes your perspective of life altogether. It forces you to reflect on your relationship and discover how you could make the time you have left with them even better.

I fear that since Alzheimer’s has a familial component, I could someday witness my mother, father, aunt, and/or uncle develop the disease too. I’ve embraced this reality with a healthy balance of being aware of its potential and having early discussions with them about their wishes and desires. These conversations are important because the disease is progressive and has no cure. I’ve also taken mental notes of things they did for their parents that I would adopt to comfort them. My mother asked her father’s caregivers at his Board and Care facility to address him by “Dr. Snook” to respect his dignity and his lifelong dedication to practicing medicine. My mother made a simple memory book for her father with photos, names, and relationships of his friends and family members and would review it often with him. My grandmother was a cat lover, so we gave her a stuffed cat she loved petting. Calming music and walks outside were great for them as well. If you feel overwhelmed and don’t know how to comfort your loved one, focus on simply loving them, and what to do next will come naturally.

What would you like others—including other people in your profession and age group—to know about the disease? What do you think they can do to help?

There’s a stigma attached to certain diseases. For example, people can assume that a person with diabetes has a poor diet. Likewise, someone with Alzheimer’s may be deemed incapable of making decisions. Yet this is not always the case. These stigmas are the consequence of ignorance. For instance, although some people with diabetes have poor diets, that may not apply to everyone who has it. The same goes for Alzheimer’s patients and their decision-making capabilities. The more knowledge we acquire about a disease, the more prepared we are to share that information with others to change misconceptions. Learn about the person with the diagnosis, not the diagnosis with the person. Be the voice that helps change the biases about people based on a disease.

To my fellow healthcare workers—I know we spent years learning about diseases and diagnoses and how to treat them. We didn’t go to school to learn how to communicate and connect with people. Now we are in jobs where we are often understaffed and overworked. We have barriers in getting to know our patients as well as we would like to. It may be due to a lack of time on our busy shift or our subconscious way of dissociating from the pain, loss, and suffering we witness all too often on the frontline. I encourage anyone caring for others to erase the stigmas attached to a person’s diagnosis and get to know your patient as a unique individual. Listen to the stories and learn who they were before their diagnosis. What did they do for a living? What did they experience in their lifetime? Target these questions to the patient, not their family. Do not automatically assume that someone with Alzheimer’s cannot appropriately answer these questions. Even if you get an indiscernible answer, you still give that patient a sense of independence instead of having someone else answer for them. When you eliminate preconceived notions about a person based on their diagnosis, you open your mind and heart to learn so much more about people. Doing this is especially important with a diagnosis like Alzheimer’s because there is so much more to them than what you see. You’re only viewing the tip of the iceberg. There is so much more to discover. This will lead you to be a more compassionate and holistic practitioner, and you will learn it really doesn’t take that much time!

Why do you think organizations like Alzheimer’s Orange County are important to our community?

Organizations like Alzheimer’s Orange County are vital to our community to help serve people and families dealing with an Alzheimer’s diagnosis or other forms of dementia. Receiving a devastating diagnosis can leave someone feeling overwhelmed, isolated, depressed, and terrified. Alzheimer’s Orange County provides a sense of community. It is a safe and comfortable space to connect with others who are on a similar journey. They provide education and resources for individuals and families to learn how to navigate the progression of Alzheimer’s disease and how to manage symptoms as they arise.

Alzheimer’s disease research is rapidly progressing. Organizations like Alzheimer’s Orange County help connect people to clinical trials and collaborate with local organizations like UCI MIND to support that work. If your family is at risk for Alzheimer’s or has already been affected, you may want to consider participating in a clinical trial. My mother, for example, is currently participating in a clinical research trial for a new drug therapy that may reduce her risk of developing the disease.

I have stressed the importance of finding support in others while navigating the rough waters of Alzheimer’s disease. Unfortunately, not everyone has this support available or knows where to find it. Alzheimer’s Orange County can be that missing link these individuals desperately need.

A sense of community, caring, support, and innovation is essential when facing a disease like Alzheimer’s. Organizations like AlzOC give people hope, and sometimes hope is just what people need to keep their heads out of the doldrums and keep going.

Do you have any tips or general advice that help you or your family?

If you are living with Alzheimer’s or caring for a loved one that has it, it is vital to learn about the disease to know what you and your family can expect and what you can do about it. That may sound intimidating, but it lets you be informed and empowered to make the best decisions for your loved one as their disease progresses. It enables you to have a plan, and the road ahead becomes smoother when you have one.

Fire and earthquake drills are practiced in schools so we can develop a reliable plan if there’s an emergency. The same goes for planning for your loved one’s disease progression to keep them safe. Find an organization like Alzheimer’s Orange County to help you navigate the coming years. I suggest meeting with someone, like a social worker or geriatric care manager, who can provide information and resources in advance. Ideally, this would happen early on while the person can still decide about their future. I highly encourage allowing the person with Alzheimer’s to make these decisions so they can feel like they have more control. However, when making decisions, do so within reason and without compromising their safety. If they make their own decisions about their wishes, then you, as their loved one, won’t have to question whether you’re doing what they would have wanted.

It’s important to practice patience with your loved one. Don’t assume they are incompetent or incapable just because of their diagnosis. Allow them to maintain their independence for as long as possible. If you take over some of their tasks too early, they will begin to lose that function earlier than necessary. If they don’t use it, they lose it! Offer them more time to answer questions or tell stories, more time for activities that require mobility, and more time to perform the activities of daily living (e.g., dressing, grooming, toileting, bathing, and eating). Don’t get upset with them if they forget something they would have previously remembered. My grandfather started calling his daughter by his wife’s name, and she learned to go with it. There was no point in correcting him or letting him know he was wrong. That would have just caused unnecessary confusion and agitation. You will find yourself experiencing emotions like anger, and it’s okay to be angry about the disease and the toll it takes on you and your family. Learn to take control of your emotions and release them in a healthy way. Don’t direct your negative emotions to your loved one. It is not them but the disease you are angry with.

The most important piece of advice for those caring for a loved one with Alzheimer’s disease is to remember to take care of yourself. Alzheimer’s can progress to someone needing 24-hour, around-the-clock care, and you cannot pour from an empty cup. You will need respite. Sometimes we get so focused on caring for others that we forget about ourselves. Remember the airplane emergency instructions that tell us to place our own oxygen mask on first before helping others—this is so that we have the resources (oxygen) needed to survive, and therefore, we can be there to help others. Check-in on yourself and other caregivers often. It may be time for a break if you notice you are getting agitated or anxious more often. Call on those close to you to help you and connect with organizations like Alzheimer’s Orange County. Have no shame in asking for help. When you take the time to care for yourself, you will become a better caregiver for your loved one, and that’s exactly what they need.


Additional Reading

Support Groups
Connect with other dementia caregivers like you and find a community that can support you through your journey. Find a support group.

Resources for Professionals
Discover valuable resources for healthcare and services providers, including free monthly webinars, training for safety services, and more. View more resources.

Healthcare Provider Referal Form
View and download our HIPAA-compliant referral form to connect individuals and families in need of our support and services. Download form.