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.
Juliet Holt Klinger, Senior Director of Dementia Care for Brookdale Senior Living is a gerontologist specializing in person-centered programs for Alzheimer’s disease and related dementias. As a trainer and program designer for close to 30 years, she has developed and operationalized programs for national companies representing both skilled nursing and assisted living levels of dementia care.
Juliet holds a Bachelor’s degree in Social Work and an Aging Studies Certificate from the University of Iowa and a Master’s Degree in Gerontology from the University of Northern Colorado.
In her role for Brookdale, Juliet currently designs and innovates care pathways and programming for Brookdale’s 560+ dementia care communities. Brookdale’s dementia care solutions span from its newest early-stage dementia care communities to skilled nursing and assisted living levels of care.