What is getting in the way of caregiving for a loved one with ALZ?

Ray Burow knew nothing about caregiving when she was thrust into that role after her elderly parent was diagnosed with Alzheimer’s disease. In fact, Burow described herself as “ignorant”—like many others in her situation—about caregiving.

She compared caregiving for someone with dementia to on-the-job training: It takes time to get up to speed and there is something new to learn every day. Ignorance about caregiving is not a crime, but “willful, blissful ignorance should be,” Burow writes in an article for the Alzheimer’s News Today newsletter. And, a caregiver’s ignorance can get in the way of effectively caring for a loved one with Alzheimer’s disease.

Ignorance is most often rooted in denial of a loved one’s Alzheimer’s diagnosis, according to Burow. For instance, refusing to believe that a loved one has a brain disorder is evident in such statements as:

“I don’t think Mom has dementia, she’s just not paying attention. You have to make her listen to you, and then she’ll respond properly.”
“With age, they’ve grown bored. Give her something to do to occupy her mind and she’ll be great.”
“She lacks focus.”
“Dad’s become too dependent because you coddle him.”
“Mom, why can’t you do this? Concentrate!”

Burow believes these misguided statements keep caregivers in denial as well as the person with Alzheimer’s, who will “grasp at any straw presented if it nullifies the reality of the diagnosis.”

Health and family caregiving experts agree that denying a family member’s Alzheimer’s diagnosis is dangerous because it often delays treatment of the brain disorder.

Alzheimer’s disease is the most common cause of dementia and the sixth-leading cause of death in the United States, according to the Alzheimer’s Association. Over time, the progressive disease interferes with a person’s ability to handle daily living activities, such as bathing, dressing, managing finances, and socially interact with others. Although there is no cure for Alzheimer’s, the disease can be treated.

When a person begins to exhibit signs and symptoms of Alzheimer’s, such as getting lost driving to a familiar location or having trouble following or joining a conversation, the Alzheimer’s Association recommends getting checked out for the disease as soon as possible.

According to the organization, an early Alzheimer’s diagnosis has several benefits, such as:

Access to treatment options
Opportunities to participate in clinical trials
A chance to make lifestyle changes that may help preserve cognitive function
Savings on medical and long-term care costs

Although there is no cure for Alzheimer’s, the disease can be treated.

Denial Can Cause Conflict in Families

Denying signs and symptoms—and even a diagnosis of Alzheimer’s disease—can be dangerous to caregivers, their family members, and the care recipient. For one, denial of an Alzheimer’s diagnosis can potentially bring conflict between family members, particularly adult children of an elderly parent with Alzheimer’s, says Elizabeth Loneseth, author of A Gradual Disappearance and The Dangers of Denial.

Loneseth has first-hand experience dealing with this issue since her father, mother, and in-laws had dementia. She now writes about the importance of facing the truth about Alzheimer’s disease and other forms of cognitive impairment.

The contention among siblings can prevent them from creating a successful dementia care plan for their loved one, she said. What’s more, siblings in denial will not help out with caregiving duties, usually leaving only one or two siblings to take on the task. And, should an emergency or accident happen, the caregiver siblings may blame the others for not helping before dementia became undeniable.

Caregiving Changes Your Perspective

At one point in time, when Burow would hear about an elderly person with bedsores, she assumed it was due to a lack of care. She believed it because “it was a common message.” But once she became a caregiver, the “common message” turned into a “painful accusation.”

“It is difficult to treat bedsore effectively,” she writes, “and it has therefore been linked by some to poor care. That’s a painful accusation for carers who are attentive and do everything within their might to prevent one from forming.”

Bedsores, also known as pressure ulcers or pressure injuries, develop when areas of skin are under pressure due to lying in bed, sitting in a wheelchair, or wearing a cast for a long period of time.

Burow says what helps is repositioning the person so that the person is not sitting or lying on the wound. It’s also important to keep the wound clean and covered with medicated gauze. She also recommends using a hydrocolloid dressing because it keeps the wound moist and provides a healing environment for tissue to regenerate.

Caregivers who have done everything they could to prevent and treat a pressure sore, should not “allow anyone to throw the guilt on you because of it,” Burow said.

Yet, Burow said she heard the skin injury could be a potential cause for legal action against a caregiver or nursing facility. “By the definition of ignorant, this is ignorant,” she writes. “Yes, sometimes a pressure sore is a sign of poor care, but often it is not.”

Support Can Override Ignorance

Caregiving experts across the board agree that education about Alzheimer’s disease and support helps to combat ignorance over caregiving for a loved one living with dementia.

Support can come in a variety of ways, such as:

Help with daily living needs and housework
Emotional support
Information from sources that include health care professionals, caregivers who
have experience caring for people with Alzheimer’s disease or local social service agencies
Social workers and psychological experts
Friends who are available to simply talk or provide different types of social interactions
Caregiver support groups

Loneseth did not offer much support and regrets being in “deep denial” about her father’s Alzheimer’s disease. When his communication skills became that of a young child, Loneseth said she did not visit often because she did not like seeing her father no longer being able to hold a “long, intelligent conversation.” However, because of her infrequent visits, Loneseth said she lost the chance to create special memories with her father.

What goes a long way for caregivers is reliable and consistent support from family members who are not in denial over a loved one’s Alzheimer’s disease diagnosis. Burow adds that caregivers want their family’s support for their caregiving efforts without the need to “defend what is true.”

Links:

https://alzheimersnewstoday.com/2021/07/26/ignorance-hinders-caregiving-loved-ones-with-alzheimers-disease/
https://www.alz.org/alzheimers-dementia/10_signs
https://www.alz.org/alzheimers-dementia/diagnosis/why-get-checked
https://www.aplaceformom.com/caregiver-resources/articles/dangers-of-denial