Debunking Dementia Myths: 5 Misconceptions You Should Dismiss

Article Summary

This article discusses five myths about people with dementia and provides insight into how to better care for them.

Key takeaways:

1. It can be difficult to adjust to a parent's memory loss.
2. Caregivers may have to reduce their hours or make career changes to care for a parent with dementia.
3. Medical power of attorney does not mean that the caregiver makes decisions for the parent with dementia.
4. Hospice care can improve the quality of life and extend the life of someone with dementia.
5. People with dementia can still lead meaningful lives.

Introduction

Many of your opinions about dementia may have been influenced by stories that friends shared or depictions that you’ve seen in movies. Once your parent has dementia, you may develop a very different perspective. If your parent has been newly diagnosed, let go of the following beliefs:

Myth: It’s easy to adapt to your parent’s memory loss

When your parent asks you the same question five times during dinner or calls you repeatedly because they forgot that they already spoke with you, it can be frustrating, as well as heartbreaking. Coming to terms with your parent’s diagnosis may mean that you’re short-tempered on occasion, instead of accepting them for who they are now. Allow yourself time to adjust.

“When a person has mild cognitive impairment, you start going, ‘You asked me that. You said that already,’” says psychotherapist Marcie Dimenstein, LCSW, founder of the Connecticut-based Elder Pathways. “You can’t always be the perfect caregiver for someone with Alzheimer’s... Give yourself a break, do something else and then come back.”

Myth: You can juggle work responsibilities while being the caregiver for a parent with dementia

Don’t expect to continue working full-time if you devote yourself to caring for a parent with dementia. You may have to reduce your hours, which may result in $300,000 in lost wages over your lifetime.

“You might have to not take that big promotion that is going to further your career, but it’s also going to put you on the road more often, because you need to be closer to home to keep an eye on Mom,” says aging life care manager and licensed occupational therapist Melissa Swiontek, OTL, ALCM, founder of the Oregon-based Passionate Healthcare Advocacy & Wellness. “We have to make those decisions and career moves to be there for our loved ones, [and] it can change the trajectory of our lives and of our career path.”

Myth: Becoming medical power of attorney means you manage your parent’s health right now

If your parent with dementia designates you as medical power of attorney, you won’t make any healthcare decisions until they’re incapable of making their own choices.

“I have a lot of family members who think, ‘I have medical power of attorney – I want this done for my mom,’” says certified senior advisor Michele Buenger, RN, BSN, a senior patient advocate at MatureWell Lifestyle Center at St. Joseph Health in College Station, Texas. “I have to explain, ‘Your mom still has capacity, and she is her own decision-maker.’ Medical power of attorney... means you take over if/when that’s needed.”

Myth: Providing hospice care for a parent with dementia is a death sentence

When someone’s life expectancy is 6 months or less, hospice care can provide in-home services to improve their quality of life, and it may extend someone’s life. Many people aren’t referred to hospice until just before they die, so some people link hospice care with dying.

“Where we hear that most is when family members don’t understand, [if] there’s a perception that, ‘Well, you’re going to kill Mom by putting her into hospice,’” says Craig Borchardt, PhD, assistant professor of humanities in medicine at the Texas A&M University College of Medicine and CEO of Hospice Brazos Valley in Bryan, Texas. “Many people, when they hear the word ‘hospice,’ think ‘I’ve got three days left to live,’ [and] that is the farthest thing from the truth.”

Myth: Someone with dementia can’t lead a meaningful life

Your parent may live life differently now, but they may still enjoy having visitors, going for walks, listening to their favorite songs, seeing family photos and partaking in other simple pleasures. Which activities they appreciate most may vary, depending on the type of dementia they have.

“With Alzheimer’s, the part of the brain that controls the long-term memories is often one of the last parts to be hit,” Dimenstein says. “There’s people who are slumped over in a chair and you play the music and they light up, and they dance to the music a little bit; others don’t respond.”

Author Bio

Lisa Fields is a passionate healthcare writer and advocate for better senior care in America. This article has been reviewed by Dr. Logan DuBose, MD and co-founder of Olera.care.