It's no secret dementia affects the brain of the patient, and tests the hearts of their loved ones. Through one woman's personal journey, experts advise on the emotional, medical, and financial aspects of caregiving for dementia.
“What I Wish I Knew About Dementia”: A Caregiving Only Child’s Experience
Updated Aug. 20, 2024
Dementia is a global health concern affecting millions. The World Health Organization reports that over 55 million people worldwide live with dementia, with nearly 10 million new cases emerging annually. Yet, these numbers only tell part of the story. Dementia’s true impact ripples far beyond those diagnosed, affecting their families and communities as well.
And one of the most challenging aspects of dementia is its often subtle onset. Dylan Wint, MD, medical director of Cleveland Clinic Lou Ruvo Center for Brain Health, explains, “Dementia is not necessarily obvious. Rather, dementia usually results from a process that starts with subtle symptoms that are often mistaken for normal aging, mood disorders, or effects of physical illness.”
Ann, a 61-year-old woman from Lakeland, FL, experienced this firsthand with her father. After her mother’s passing, Ann began noticing small changes in her father’s behavior. At first, these shifts were so subtle that she attributed them to grief and the natural aging process. He occasionally misplaced items or forgot appointments, and it wasn’t until these incidents became more frequent and were coupled with uncharacteristic confusion that Ann realized something more serious might be developing.
Drawing from Ann’s caregiving journey and insights from Dr. Wint and Lucille Carriere, PhD, Cleveland Clinic Angie Ruvo Endowed Caregiving Chair, we share their collective wisdom on what they wish more people knew about dementia.
The early signs of dementia
An important place to start is knowing the symptoms of dementia. “Rapid, complete forgetting is the most characteristic symptom of Alzheimer’s disease, which is the most common cause of dementia,” notes Dr. Wint. This often shows up as repeating questions and statements, misplacing everyday items, forgetting recent events, and losing track of the date.
Here are some additional signs of dementia to be aware of:
- Struggling to find the right words in everyday conversations
- Noticeable shifts in mood, behavior, or personality
- Difficulty in completing familiar tasks
Recognizing these signs is important, as Dr. Wint emphasizes: “Early evaluation and intervention can lead to better outcomes.” Understanding and identifying these early can help in the management of the disease, slow its progression, and improve the quality of life for those affected.
The common misconceptions about dementia
Dr. Wint shares a few misconceptions about dementia that he often encounters in his medical practice, explaining what you should know about each one:
“Dementia and Alzheimer’s are interchangeable”
Dementia is a general term for a decline in mental ability that’s severe enough to interfere with daily life. It has many causes. Alzheimer’s disease is the most prevalent cause of dementia.
“Nothing can be done about it”
Contrary to this belief, studies have shown that up to 35% of dementia cases could be prevented by adopting healthier lifestyles. There are also treatments that can alleviate the symptoms of Alzheimer’s disease, and recent breakthroughs offer new therapies that slow its progression.
“Alzheimer’s and other causes of dementia cannot be diagnosed until after death”
Modern advances in medical technology now allow us to detect amyloid and tau proteins—the hallmarks of Alzheimer’s disease—in the living brain. Highly accurate diagnostic techniques are also available for Lewy body dementia and vascular dementia, allowing for detection in very early stages.
How to reduce the risk of dementia
“The most consistent finding is that regular aerobic exercise reduces the risk of dementia,” says Dr. Wint. Alongside exercise, he highlights the importance of the following:
- Mediterranean-style diet—like the MIND diet (Mediterranean-DASH Intervention for Neurodegenerative Delay)
- Proper sleep, which means seven to nine hours of restorative sleep
- Maintaining good health
- Steering clear of harmful habits such as smoking, drugs, and excessive alcohol consumption
- Engaging socially and intellectually to boost the brain’s resilience
If you’re interested in other daily practices, here are 50 everyday habits that can lower your risk of dementia.
The latest dementia research and treatment
We’re living in a hopeful era for tackling Alzheimer’s disease, thanks to groundbreaking strides in both diagnosis and treatment. The latest therapies approved for Alzheimer’s work by slowing the disease’s progression, primarily through the removal of harmful amyloid proteins from the brain. “Imaging, blood, spinal fluid, and skin tests can detect abnormal protein accumulation in the brain, opening the door to more treatments that target toxic proteins,” Dr. Wint elaborates.
He also highlights the important role of “citizen scientists”—individuals who volunteer for research studies. The lack of participants in clinical trials poses a challenge in developing new treatments. There’s always a call for more people, including those with normal cognitive function, to participate in these studies and contribute to advancing the understanding and treatment of dementia.
Caregiving for someone with dementia
“Due to the progressive nature of dementia, the journey is ever-changing. With each new stage of dementia, family caregivers are providing more daily care and assistance to their loved one,” shares Dr. Carriere.
For many, this role is uncharted territory. Even for those who have been caregivers before, no amount of experience makes you fully prepared for what’s to come. Dr. Wint emphasizes that caregiving isn’t a one-size-fits-all process, urging caregivers to be easy on themselves amidst inevitable imperfections. Doing your best with the knowledge you have at the moment is all you can really ask of yourself. It’s important not to dwell on past decisions or actions that didn’t pan out as hoped.
It’s not uncommon to feel overwhelmed and inadequate when you’re trying to manage every aspect of caregiving by yourself. Ann, who looked after her father, shares her heartfelt thoughts: “Being an only child, I had no one else to lean on. It was all on me, and honestly, I didn’t know what to expect. It was especially tough in the beginning, realizing my father was battling dementia just after we lost my mother.”
Ann gained invaluable insights while caring for her father. She learned it was important not to reason with him when he was confused and to avoid correcting him about things he’d forgotten, especially when in front of other people. Giving too many options, whether about what to wear or what to eat, only added to the confusion. Instead, simplifying choices or making decisions based on his known preferences helped reduce stress.
Dr. Wint also points to the brighter sides of caregiving. While often discussed in terms of its challenges, caregiving can also bring unexpected rewards, like deepening relationships and discovering personal strengths in giving care.
Available support systems for dementia patients
“Dementia is complex, and each person’s journey is unique. The most effective way to address the many losses and challenging symptoms commonly seen in dementia is through a team approach,” explains Dr. Carriere. This team can include doctors, nurses, therapists (occupational, physical, and speech-language), and mental health professionals. Each specialist works together to address the individual needs of both the person with dementia and their caregivers, ultimately aiming to improve quality of life.
Navigating care transitions
For caregivers, transitions in care can be especially stressful. Dr. Carriere suggests that caregivers regularly ask themselves, “What new information, support, or skills do I need right now?” Don’t be afraid to reach out to your loved one’s medical team or local Alzheimer’s Association chapter for guidance and resources.
When caregiving started to take its toll, Ann knew it was time to ask for help. “I learned I didn’t need to do it alone,” she shares. “My father spent his final years in a care home, which allowed me to focus on my own health—which I realized had been suffering—and be more present with him.”
Financial resources for dementia care
The financial burden of dementia care is real, and many families struggle with it. The National Institute on Aging shares some important resources:
Program of All-Inclusive Care for the Elderly (PACE): Offered by the Centers for Medicare & Medicaid Services, PACE may cover some or all long-term care needs for eligible individuals with dementia who live in the community.
BenefitsCheckUp: This free service from the National Council on Aging helps identify federal and state benefit programs that can potentially reduce costs and improve access to care and support.
Benefits.gov: As the official U.S. government website for benefits information, Benefits.gov allows you to search for federal benefits you may be eligible for.
Final thoughts
Watching dementia erode a loved one’s memory is a heartbreaking experience. Yet, amidst the sorrow and confusion, the patient’s capacity to experience love and affection does not disappear. People with dementia often respond positively to expressions of warmth and care, even if they might not always express it in conventional ways or remember the specific contexts of their relationships.
“Even as the disease progressed and my father found it difficult to recognize me, I tried to maintain a connection with him. Some days were definitely better than others, with many, many, hard days. Despite everything, he could sense my familiar presence. That is something I hold onto to this day.”
Ann also noted a lighter moment that often brought joy: Her father’s love for the soft blanket he once shared with her mother, which Ann saw as proof that important parts of his memory stayed intact. He cherished its warmth so much that he playfully resisted Ann whenever it was time to wash it.
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Originally Published: August 20, 2024
