The Demands of Dementia:
Dementia is not a specific disease—it’s a general term for many conditions that affect the brain and cause cognitive decline. Symptoms include memory disorders, personality changes and impaired reasoning. Unfortunately, it gets worse over time and there is no known cure for dementia. It’s the sixth-leading cause of death for adults in the United States.

The majority of people living with dementia are cared for by family members or friends. In total, an estimated 16 million unpaid caregivers provide more than 18 billion hours of care. Caregivers of people with dementia generally provide care for a longer duration than caregivers of people with other types of conditions, according to the Centers for Disease Control and Prevention. Over time, the demands of caregiving often take a toll on mental and physical health. While rewarding, caregiving is a huge responsibility that can result in grieving, chronic stress and caregiver burnout.

Signs of Caregiver Burnout

• Denial
• Anger
• Social withdrawal
• Anxiety
• Depression
• Exhaustion
• Sleeplessness
• Irritability
• Lack of concentration
• Health problems

When you first learn that yourself or a loved one has been diagnosed with mild cognitive impairment (MCI) or dementia, it’s normal—and common—to react with denial, anxiety and fear as a coping mechanism. Seniors and family members living with dementia may find themselves in denial for many reasons. However, prolonged denial can be dangerous to both caregivers and their loved ones.

Common Reasons for Denying Dementia

1. Failure to recognize symptoms
   The warning signs of dementia and other diseases such as Alzheimer’s Disease don’t happen overnight, so they are not always obvious. Sometimes the signs are so gradual, it’s difficult for a spouse or family member to notice symptoms of dementia. Conversely, limited interaction or living far away from a family member with dementia can make it difficult to pick up on subtle signs of memory loss that affect daily life.
2. Forgetting diagnosis
   In the later stages of dementia, a person with dementia is unable to recognize changes in their behavior and personality. Dementia patients may think of themselves as “fine” and even forget that they were diagnosed with dementia altogether. It’s not intentional; dementia affects a person’s ability to comprehend and cope with the dementia diagnosis.
3. Misconception that dementia is a “normal part of aging”
   As people age, it’s normal to miss a monthly payment or lose things from time to time. However, the inability to manage a budget, keep track of time or carry a conversation are signs of abnormal age-related changes and cognitive impairment. In these instances, denial of dementia can have detrimental effects on a loved one’s health and safety. Early diagnosis and intervention is key to maintaining brain health and mitigating further cognitive decline.
4. Stigma of dementia
   While dementia is a common disease, it lacks significant public awareness and understanding. As a result, negative attitudes about dementia can impact a person’s confidence and self esteem. They may also feel insecure and believe that others may see or treat them differently.
5. Hope that dementia will go away
   All types of dementia are progressive. That means that the brain becomes increasingly damaged over time. How quickly or slowly it progresses depends on each individual. “Good” days with dementia can often bring false hope that the dementia was misdiagnosed or going away.

 

Tips for Loved Ones with Dementia

1. Age in Place if Possible
   For someone with dementia, moving can be a very stressful and confusing time. Look for a community that allows residents to age in place. It’s ideal to find a long-term living option that’s designed to accommodate seniors as their care needs evolve.
2. Keep it Simple
   If a loved one is resistant to show up for an appointment, it could be due to denial or fear. Address their concerns and explain what’s happening in a simple way they can understand. For example, you could say, “The doctor needs to ask you a few questions to figure things out.” Or “The doctor wants you to do this evaluation to show how well you’re doing.”
3. Don’t Take it Personally
   In the later stages of dementia, it’s not uncommon for seniors to forget people—even their own spouses, children and family members. But that doesn’t mean it isn’t difficult or upsetting for caregivers. Remember, don’t take it personally if they respond harshly to you because they think you’re a stranger. A gentle response can help calm their anxiety and help you have a positive interaction with your loved one.