Ignorance Hinders Caregiving for Loved Ones With Alzheimer’s Disease

Ray Burow avatar

by Ray Burow |

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Ignorance abounds, and sadly, ignorance surrounding caregiving is rampant.

Before being a caregiver, I was ignorant, too, as most of us were. The definition of ignorance is “a lack of knowledge and information.” After being thrust into the caregiving role, it took time to get up to speed.

Caregiving for a person with dementia is akin to on-the-job training. Every day brings something new to learn, which brings me to this column’s point: Ignorance isn’t a crime, but willful, blissful ignorance should be.

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Ignorance is often rooted in denial

Relatives and friends sometimes refuse to accept a loved one’s dementia or Alzheimer’s diagnosis, and they’ll offer some of the most misguided statements and advice. This places undue stress on both the caregiver and the loved one with dementia. Perhaps you’ve endured something like the following:

  • “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!”

As disappointing as comments like these are for a caregiver, they’re much more so for the person with Alzheimer’s disease, especially if they’re newly diagnosed. They’ll grasp at any straw presented if it nullifies the reality of the diagnosis. Wouldn’t you?

This type of opposition is difficult for the caregiver, too. It insinuates that we’re the ignorant ones, and it undermines credibility with the loved one for whom care is provided. Our job has its own set of challenges, but adding this opposition to the mix is unbearable. We need familial support of our caregiving efforts without the need to defend what is true.

Ignorance shows its ugly head in other areas, too, even in healthcare. For instance, at one time, I believed bedsores signaled a lack of care. I believed it because it’s a common message. However, as a caregiver, I learned that a pressure sore can appear even with great attention, and it’s not always a sign of poor nursing care.

A pressure sore appears following long periods of sitting in one place or lying in the same position. Having lost interest in the things they once enjoyed, people diagnosed with Alzheimer’s disease often sit for long periods, despite the cajoling of caregivers.

People who sit in wheelchairs also are susceptible, as are those with diabetes and circulation issues. Immobility is the culprit behind an ulcer that can form on a person’s back, buttocks, back of the head, knees, and heels of the feet. Blood flow is interrupted, skin and tissue begin to break down, and sores appear.

It is difficult to treat a bedsore effectively, 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.

How to treat bedsores

Reposition the person with a bedsore so they aren’t sitting or lying on the wound. Reposition them often to remove the pressure that causes the wound to continue to break down. Keep the wound clean and covered with medicated gauze.

I’ve personally found DuoDerm dressing to be effective. It is a hydrocolloid dressing, meaning it keeps the wound moist and provides a healing environment for tissue to regenerate.

As the wound heals, hydrocolloid (DuoDerm) dressing protects new tissue and absorbs excess fluid. The product comes in different sizes, and you can cut it to fit a specific wound. Cut it with rounded edges and large enough to cover the sore, with a little overlap.

The wound can get better, but it will be an ongoing battle, especially for someone in the mid to late stages of Alzheimer’s disease. Your loved one may recognize DuoDerm or medicated gauze as something foreign and pull it off, along with the scab that’s formed. Speak with a health professional about a bedsore that won’t heal.

If you’ve done everything you can to prevent a pressure sore from forming and followed up with treatment, don’t allow anyone to throw guilt on you because of it. For example, I recently heard it advised to seek legal action against a caregiver or nursing facility if your loved one has a pressure sore. By the definition of ignorant, this is ignorant. Yes, sometimes a pressure sore is a sign of poor care, but often it is not.

When ignorance abounds, caregivers’ responsibility is to kindly educate family and friends regarding caregiving and Alzheimer’s disease. Ignorance is not a crime, but if willful ignorance continues, there’s nothing you can do about it.

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Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.

Comments

Peggy Hernandez avatar

Peggy Hernandez

Very informative article especially what can be used on a bedsore. How easily is it removed.?

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Betty Meador avatar

Betty Meador

I am the Director of Nursing in a very small nursing home. Our population consist mainly of Alzheimers / Dementia residents. I also lost my son this past year to prostate cancer. My son developed a Kennedy Ulcer before his death. I can attest to the fact that it wasn't due to poor nursing care! Sometimes they develop in spite of our best intentions. Although my son did not have dementia his movement was very limited because of pain an there was only one or two positions he was comfortable in. In my role as Director of Nursing the subject of pressure ulcers is a frequent topic for inservice. I always tell my caregivers that if it does happen, it is not their fault. If they are doing all they can to prevent it using evidence based practice, then they have done all they can and must understand that this resident still has rights. Those rights include being in a position in which they are comfortable. Very frequently we will reposition only to go back 15 minutes later to find they have gone back to the original position. Education feels like an exercise in futility since they will not retain it so you reposition and leave the rest up to them and their free will. You continue to love them and exhibit that love in everything you do for them. You join them in their world for they can't join you in yours. You be happy, exhibit love and grace, and leave it in God's hands.

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