Handling Family Disagreements About Dementia

About Juliet Holt Klinger

Senior Director of Dementia Care

Juliet is a passionate advocate for people living with dementia and their families. She is deeply committed to improving the cultural acceptance of those with cognitive differences. As our gerontologist and Senior Director of Dementia Care, Juliet develops person-centered care and programming for Brookdale’s dementia care communities. But if you ask her, Juliet says she continues to learn every day from the true experts, those living with dementia and their care partners. Juliet believes we need to move beyond the concept of caregiving, which implies a one-sided relationship, and embrace the idea of care partnering. Care partnering is about relationships built on cooperation—a two-way street promoting person-centered care and mutual feelings of purpose, where the person living with dementia also plays a strong role in shaping their care and daily routine. We are here to partner, learn and grow with our residents and families to make aging a better experience. After volunteering in nursing homes in high school, Juliet knew she wanted to work with older adults. While working on her bachelor’s degree in social work at the University of Iowa, she completed an Aging Studies Certificate program, before there were formal gerontology programs available. At Iowa, Juliet also had the chance to study with pioneers in the field of dementia care, an opportunity that shaped her passion for caring for those living with dementia. Trained as a gerontologist, with a master’s degree from the University of Northern Colorado, Juliet joined Brookdale in 2004. She is a seasoned senior living executive with more than 30 years of experience designing and executing innovative Alzheimer's and dementia care programs and living environments in both assisted living and skilled settings.

Family strife over dementia can occur even before the disease is identified. There can be a dispute about whether a loved one’s forgetfulness and other behavior merit visiting a doctor. Even after dementia has been diagnosed, some family members may disagree that there is any issue.

This is a special challenge when adult children are spread out geographically or because of busy life circumstances, such as travelling often for work. Sometimes this means the sibling who lives closest to their parent or parents, or has the greatest ability to spend time with them, sees cognitive or behavior changes earlier and more frequently than the others do. This can put him or her in the position of being the messenger who delivers news that no one wants to hear.

We all know that no family is perfect and the emotions that arise when a loved one has dementia symptoms can stir up tensions that don’t normally appear. Upon being told of the situation, siblings may experience a rush of unspoken anxieties, from wondering what their role will be in dealing with caregiving to fears about developing dementia themselves. Sometimes it can be easier to respond by denying there could be a problem than it is to face these worries. This, of course, is frustrating, often to the point of anger, for the sibling who is closest to the situation.

Something that can be very effective for starting this conversation is keeping notes on incidents that illustrate the concern. Don’t just say, “I think there’s something wrong with Mom because she seems forgetful and confused.” Instead, speak to the specific issue that “Mom turned the stove on and forgot about it three times this week, and she has gone to two appointments on the wrong day in the past ten days.” This changes the conversation from seemingly subjective impressions that could be disputed to objective facts that can’t be denied.

A particularly effective way to convince other family members that the symptoms are real or that the diagnosis is legitimate is to ask them to spend more extended time with the loved one. More than a matter of stopping in for a few hours, they should stay at least one night and ideally as much as a week so they can gain a real understanding of what is going on.

It’s also important that when the closest family member begins to notice possible dementia symptoms, he or she should let the others know right away. Because this subject is uncomfortable to discuss, and even speaking worries about it aloud may seem to make the potential dementia more real, people can hold off too long on telling others in the family. That can lead to the discussion first happening while a crisis is occurring. This doesn’t provide time for everyone to cope with their feelings, learn more about the disease and reach an emotional equilibrium that allows for calm conversation.

Managing and maintaining family relationships is a crucial aspect of the dementia journey and it’s not always easy. This is one of the many areas in which participation in a caregiver support group can be very helpful, because it’s a venue to share feelings and benefit from the experiences of others who truly understand the experience.