A Surprising Source of Caregiving Tension

Last updated: August 08, 2011
Buttin' heads

Quick: How well do you understand your loved one?

"Pretty darn well" is a logical answer, given the intensity of the relationship between most caregivers and their loved ones. But new research from Penn State and the Benjamin Rose Institute on Aging says otherwise. It seems there's often a lack of basic understanding between caregivers and their care receivers who have mild or moderate dementia -- and this misunderstanding can add extra tension to the caregiving situation. (Most of the pairs studied were adult children and their parents.)

According to the researchers, caregivers tended to underestimate how important core values were to their loved ones, like:

  • Autonomy (such as being able to do things without help)
  • Control (such as being able to spend money as they choose)
  • Family (such as being able to take part in family celebrations)
  • Safety (such as making decisions about daily life activities)

The people with dementia could still express what they wanted, researchers found. But their caregivers -- who quickly become surrogate decisionmakers for those with dementia -- often didn't perceive which values were still held dear and made choices that sometimes went against the person's desires. So for example, a caregiver might believe that Dad doesn't care about family parties and is calmer away from them -- but to Dad, despite his dementia, they're still cherished times, and being excluded makes him sad and upset.

Imagine reversing roles: Think back on all the conflicts you had with your parents in your younger days -- now imagine they're making all decisions for you even though they don't really "get" you. (Wait, that's what teendom was all about!)

On the other hand, those caregivers who saw their relative as still able to direct his or her daily life were also more in tune with the person's values and beliefs, researchers said.

Obviously it's a fine line, because people with dementia want to do things they simply can't (carry around large amounts of cash, drive a car, take a walk into town all alone). Especially as the dementia progresses, caregivers have to balance their loved ones' desires and values with common sense and safety. And that's what's so hard.

But the useful nugget I gain from this study (in the August, 2011 issue of The Gerontologist) is the basic insight that sometimes it's not "just the dementia" or "just Mom's ornery personality" that's gumming up our ability to find a peaceful caregiving relationship. Sometimes we can make daily life easier on ourselves by really asking, "What does Mom want?" "What would Dad want?" -- and (admittedly the hard part) then finding reasonable ways to accommodate.

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4 Comments So Far. Add Your Wisdom.

about 3 years ago

The second-to-last paragraph provided necessary balance. It's important to recognize that the person may wish to continue doing things she used to do, but can no longer do so safely without assistance. Supporting a sense of autonomy is crucially different from pretending that the person actually retains the ability to be completely autonomous. I've seen the dangerous effects of this ignorance by a caregiver, leading to the person with dementia left to manage her own medication, for example, when it was abundantly clear she needed help. She also became more isolated because the caregiver behaved as if it were the patient's "choice" not to socialize, when in fact the patient had lost sufficient ability to plan and organize her time in order to initiate and attend social events. She wanted to spend more time with other people but wasn't capable of making it happen without help, and the caregiver expected her to do it all herself.

about 3 years ago

Didn't really think about this before? My Mother-in-Law usually just does what I tell her to for the most part. But hadn't really thought about the times she gives me trouble. HMMMM

about 3 years ago

We who get into the habit of just making the decision, need constant reminders that our loved ones want to have input and feel a sense of being of worth . I sometimes forget to pose simple either-or choices that allow for valid input.

Anonymous said about 3 years ago

Wonderful article. It made me realize that when the person with dementia wants to do something, like paying for the dinner, we should let hom do it. It gives the person a sense of belonging, contributing. Thank you!

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