It can be difficult to accept that your aging loved one may be experiencing early signs of dementia. It’s human to reject what we find unpleasant or frightening, but denying signs of memory impairment can be dangerous to both caregivers and their aging loved ones.
Elizabeth Lonseth learned this the hard way. She is the author of A Gradual Disappearance and The Dangers of Denial — two books covering her own experiences with her father, mother, and in-laws with dementia. She focuses on the importance of acknowledging Alzheimer’s disease and other forms of cognitive impairment and discusses how to deal with dementia denial.
It is important to understand how dangerous the denial of dementia can be and to learn ways to keep everyone safe and connected through the difficulties of a dementia diagnosis.
Watching an aging family member struggle with dementia is painful — it can be like spending time with a stranger. A common reaction is to visit less often, but this denial by family members just leads to lost time and missed opportunities.
“It was so painful seeing this brilliant man no longer able to hold a long, intelligent conversation. His communication skills became that of a young child,” Lonseth recalled. “So instead of visiting every month, I came every other month or every three. Deep in denial, I lost the chance to create special memories with my father.”
While dementia may change the ways you connect with your aging loved one, it doesn’t mean you can’t spend quality time with them. On your next visit, try one of these engaging activities for people with dementia.
When a senior is deemed mentally incompetent by a doctor, they can no longer execute legal documents. Without a power of attorney, advance directives, and financial decisions in place, handling a senior’s medical treatment, long-term care, and end-of-life care is more difficult.
These decisions could fall to a family member who doesn’t know or share the senior’s best interests rather than a person of the senior’s choice. To eliminate legal complications in the future, suggest that your aging loved one create advance directives now.
Denial of Alzheimer’s or dementia by family members can prevent you and your siblings from creating a successful care plan. Denial can also irreparably damage family relationships.
“Denial on the part of a family member can cause family disputes,” Lonseth warned. “The children in denial don’t help out, and those who are aware take on multiple burdens, sometimes alone. Often, those in denial believe their siblings are overreacting.”
After an emergency or accident, the caregiver may blame their siblings for not helping before dementia became undeniable. It is possible to learn how to deal with Alzheimer’s or dementia denial as a family — by sharing research and opening up about your experience together.
Dementia denial can lead to significant financial repercussions. Seniors are common targets for scams and financial fraud, and memory loss increases their likelihood of writing duplicate checks, overspending, or making other poor financial choices. Dementia can also cause seniors to ignore bills, fall behind on mortgage payments, and potentially face legal consequences for nonpayment.
“Finances are private,” explained Lonseth. “Parents don’t want to share this information with their children. But it’s crucial to discuss financial plans ahead of time, so your family doesn’t fall under financial hardship.”
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Caregivers put their health at risk when they deny they need help caring for a loved one. In fact, family caregivers older than 66 have a 63% higher mortality rate than non-caregivers, according to a University of Pittsburgh study.
Alzheimer’s denial in a spouse can leave the senior experiencing dementia in a dangerous situation, as well.
“There are couples who have been married 40 to 60 years, and one goes downhill and the other doesn’t want the rest of the world to know. The caregiver gets sick, and then the person with dementia doesn’t have care,” Lonseth explained.
Beyond missed opportunities and financial repercussions, denying dementia symptoms can also lead to serious health concerns. It is important to resolve Alzheimer’s and dementia denial to prevent the following physical and mental health risks in your loved one.
Falls are the leading cause of both fatal and nonfatal injuries in people older than 60. Proper care and home modifications, such as installing nightlights to reduce disorientation at night and removing trip hazards, can help keep seniors safe.
But, if you’re in denial about your parent’s declining health, precautions may not be made in time. Dementia behaviors, like forgetting to turn off the oven or garbage disposal, can lead to serious household risks.
Medication overdose is common in seniors with dementia. Even with marked pill dispensers, your loved one could be in danger of poor medication management, since people with cognitive impairment often lose awareness of the days of the week or passage of time.
Similarly, it’s easy for seniors with dementia to neglect nutrition. They may forget to eat, eat expired food, or eat certain foods in excess.
“My father-in-law would have eaten a full pound of butter in one sitting if we’d let him,” Lonseth recalled.
Without family intervention, seniors in denial of their dementia may continue dangerous daily tasks — like driving. Driving with Alzheimer’s or another type of dementia endangers pedestrians and other drivers and can cause significant property damage.
In the home, a senior with dementia may become so disoriented that they injure a spouse or family member. Even if you’ve come to terms with your loved one’s dementia diagnosis, it’s important to consider how to deal with their denial if you believe it may endanger them or those around them.
Unacknowledged dementia can leave seniors vulnerable to multiple types of elder abuse. In addition to being susceptible to financial abuse, they may be unable to report the details of physical or sexual abuse to the appropriate authorities.
Dementia can also lead to elder abuse between spouses. A senior with advanced cognitive decline may experience significant behavioral changes that lead to violence. Alternatively, a caregiver who hasn’t learned how to deal with dementia behaviors properly could resort to yelling or other emotional abuse.
“Often, a spouse is aware their husband or wife has memory impairment, but they don’t want anyone else knowing about it, so they lovingly try to protect them from the outside world and begin to cut off family and friends,” Lonseth explained.
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Denying the need for outside help or care can be dangerous for both the senior with dementia as well as their partner.
“Maybe in the beginning stages a spouse can handle the needed care, but as it snowballs, it will become overwhelming,” Lonseth cautioned. “Caring for a loved one at home is draining physically, mentally, and emotionally.”
Coming to terms with dementia is difficult, but acknowledging what your loved one is going through can get them the right care and treatment early on. Here are some tips to help you accept a dementia diagnosis in your loved one, understand how to deal with denial, and care for their best interests.
Acceptance is the first step. After understanding the risks of denial and determining that your aging loved one may be suffering from dementia, you should discuss potential solutions. Here are three common options families may pursue.
Memory care. Memory care communities are designed to help older adults with cognitive decline live safely. These communities have specialized staff professionally trained to address specific memory care needs. Unique designs and floor plans prevent wandering and make for a stimulating yet safe layout. Activities are tailored just for people with dementia.
In-home care. If your loved one prefers to age in their own house or apartment, home care can help them do so safely. This type of care provides in-home companionship, assistance with daily tasks, and help with managing dementia symptoms. Make sure the home care aide has experience with dementia patients as professional skills are required.
Respite care. If you act as a primary caregiver for your loved one with dementia, respite care can help you avoid the burnout and health complications that may accompany full-time caregiving. This type of care is short term and may be offered at a local memory care community, senior center, or agency.
“Many people think they can provide all the care themselves, but the truth is, there is awareness, education, and medical knowledge that is needed. If your loved one is diagnosed with a heart problem and needs surgery, you wouldn’t take them home. Memory care needs to be approached in the same way,” explained Lonseth.
Discuss specialized memory care options with a Senior Living Advisor at A Place for Mom, today — let them help your family find memory care communities or home care providers near you.
Interview with Lonseth, Elizabeth. May 2020.
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