By Linda Klinefelter
Dear Readers, I launched the column “Dementia Caregiving 101” to be a lifeline for caregivers supporting loved ones facing the challenges of dementia. This column is dedicated to providing not only information but also heartfelt support and valuable resources for those who may struggle to attend caregiver groups or access outside services. Together, we can navigate this journey with compassion and understanding
In the realm of caregiving, the responsibility of making decisions often weighs heavily on the caregiver. Through my conversations with caregivers, I can see that they face heart-wrenching choices regarding the care of their loved ones. I like them; I have had to make the same difficult decisions. These decisions are made with deep consideration and love. This month’s column focuses on the challenges of decision-making for individuals with dementia and explores who is able or unable to make those decisions.
This past August, Diane Sawyer interviewed Emma Heming Willis, the devoted wife of Bruce Willis, who is bravely facing a diagnosis of Frontotemporal Dementia (FTD). This challenging condition profoundly impacts personality, behavior, and language. During the interview, it was revealed that the family had made the difficult choice to transition Bruce into a care facility.
This decision ignited a firestorm of criticism from the public. Emma’s powerful response — something along the lines of, “You don’t get to vote” — echoes a larger truth. It’s this notion of public opinion, and its intrusion into deep personal decisions, that I find compelling and worth exploring.
An estimated 63 million family caregivers in the U.S. represent nearly one in four adults, according to a 2025 report from AARP and the National Alliance for Caregiving. Many of these caregivers are working alone, providing ‘round-the-clock care without much opportunity for assistance or respite.
Having a strong understanding of both the numbers and the demands of 24/7 caregiving, I empathize with the frustration that arises when a family member who is not involved in the caregiving process offers criticism of the caregiver’s decisions. This situation can be especially challenging when the criticism comes from a distance. I have often mentioned that those who do not participate in caregiving — whether siblings, children, or friends — should have limited say in the caregiver’s choices.
I want to emphasize that I genuinely welcome outside advice, suggestions, and support when navigating challenges. However, when this external input turns into criticism, I encourage caregivers to seek assistance more proactively. In such cases, I recommend inviting those who offer their opinions to spend a few days alongside you. It’s important to listen to and validate their concerns, but also to make it clear that they need to contribute to the care.
This first-hand experience not only deepens their understanding of the complexities involved but also provides the caregiver with a much-needed opportunity for respite. If such an invitation is met with hesitation or a refusal to engage, it becomes evident that those voices may not have a significant role in the decision-making process.
As dementia progresses, the demands of care become increasingly intense, placing incredible emotional and physical strain on the caregiver. In this journey, many caregivers find themselves sacrificing their own health while passionately supporting their loved ones.
During these trying moments, the weight of external criticism can feel overwhelming. That’s why I urge you to embrace a powerful mantra: “If they are not here to offer help or resources, their opinions hold no power.”
By adopting this guiding principle, you can shield your well-being and focus wholeheartedly on the love and care you provide. Remember, nurturing yourself is just as vital as nurturing those you care for.
