Featured Article: How to Reduce Dementia’s
Tragic Toll on Families. The disease often pits siblings against each other. But it doesn’t have to.
By: Dr. Agronin
Families of individuals with dementia struggle to maintain emotional equilibrium. But the strain sometimes turns loving siblings into estranged and shattered combatants.
When a family member suffers from dementia, we tend to view it as an individual tragedy. But too often this wrecking ball of a disease takes a toll on the entire family.
Even under the best circumstances—with state-of-the-art care, well-intentioned caregivers, and sufficient social and financial resources—the trajectory of most forms of dementia is difficult to control. It’s often a chronic disease with symptoms that will only worsen. Discontinuities in care are common in a health-care system that lacks sufficient geriatric specialists.
In the face of these challenges, the families of individuals with dementia struggle to maintain emotional equilibrium along the way. That’s especially true when the spouse of the afflicted has already died, leaving decisions about care in the hands of the children. That’s when this disease of one damages the well-being of many, sometimes turning close and loving siblings into estranged and shattered combatants.
The tragedy here is that it doesn’t have to be this way. If families understand the perils, they can navigate them without imploding.
Economic and emotional toll: Those perils, of course, are many. Families of persons with dementia spend billions of dollars—thousands a month per household—on health care, supplies and paid caregivers. The average unpaid caregiver, the Alzheimer’s Association says, works almost 22 hours a week on the person’s behalf. And, in terms of total cost, none of this takes into account lost wages, lessened productivity and decreased spending on other household needs and luxuries. Yet the economic toll often pales next to the emotional one.
I have seen people, for instance, who were simply not in a position to take care of a parent with dementia. Maybe they had a young family, or were just starting a career. They simply lacked the time and emotional energy to care for an aging parent. So, perhaps after trying for a while, they send the parent to another sibling. They are relieved of the burden, but they are racked with guilt.
Spillover Effects: The effects that unpaid caregiving can have on the caregiver’s other job are greater when the person under care has Alzheimer’s or other dementias, compared with cases in which the person under care has other issues
Other children often relish the opportunity to organize a parent’s care, finding meaning in filial duties. But they can also find themselves increasingly frustrated and resentful when siblings critique their caregiving approach.
Meanwhile, some children become enraged and depressed as they watch their parents go through changes that they struggle to believe are true. They might even reject the dementia diagnosis and medical interventions.
Until a parent’s illness, siblings with different personalities rarely, if ever, have to work on a common project. The family dynamics often are stabilized by a history of respect and even admiration for one another—from afar. In addition, each child has his or her own private connection with a parent.
These dynamics—among siblings and between siblings and parent—are at risk of breaking down in the face of dementia. There is no leadership or intermediary to gratify individual needs or resolve conflicts. It is each man or woman for himself or herself.
This emotional quagmire isn’t always helped by the full congress of specialists, advisers, care managers and in-the-trench aides needed to care for an aging person with dementia today. As we live longer and healthier lives than previous generations, we also accumulate a larger and more complex array of physical and mental ailments that need attention. We can preserve the body for much longer than we can preserve the mind.
Gone are the family doctors who know the whole family across generations and manage all health care. They’ve been replaced by competing systems of care with multiple clinicians who each manage their own piece of the person. Gone, too, for the most part are multi-generational households with strictly defined roles and a surrounding family or community invested in care.
There is simply no way to remedy these missing pieces for care giving families who are, more often than not, spread across the country.
Navigating the journey: So, all that is the bad news. And it’s bad, indeed: This is a terrible disease that can wreak havoc on all those who must deal with it.
Fortunately, it doesn’t have to be as bad as it often is. There are several important strategies that, when implemented early and consistently, can vastly improve the well-being of caregivers individually and as a family unit.
First, the most basic need for families is to know what they are dealing with in terms of the diagnosis and any associated conditions. This requires a comprehensive baseline assessment by an expert in dementia, and regular monitoring by both medical and behavioral specialists. This information enables everyone to have the same understanding of the big picture. It puts everybody on the same page as far as knowing what exactly is going on.
A Trying Job: Emotional stress reported in a survey of Alzheimer’s and dementia caregivers, in percent
Source: Alzheimer’s Association, 2017
Second, the caregiving family needs to meet early on and establish basic goals and ground rules. What sort of care do they envision over time, and what can they afford? Too often, families plunge into caregiving with differing perspectives on their parent’s diagnosis, and they never coordinate a common plan for the type of care and the logical roles that each could play.
A third and crucial step is to assign a point person for coordinating daily care and decision making. Sometimes, a third party such as an aging-life-care professional needs to be included when family members do not live near the afflicted person, or when differing perspectives would benefit from both an independent guide and a mediator for disputes. In extreme cases, this person can be court-appointed.
Throughout this entire process, the children must try their best to share the burden of care and commit themselves to subjugating personal needs and agendas to the overall care needs of the affected person. This goal is easier said than done when there are longstanding ethical, financial or other disagreements that become amplified by the loss of parental authority.
Such strategies are critical, since caregiving is a long journey—eight to 10 years on average—and requires constant learning, renewal and reinvention to survive. Alzheimer’s disease and every other form of dementia bring heartbreaking situations, but also the opportunity to bring families together in a common purpose, and to fulfill an endless debt to a parent that most children want to accomplish.
The key is for families to understand that core emotional need and to realize that a win-win approach is possible, resulting in relationships that are closer, healthier and more resilient—not in spite of their parent’s illness, but because of it.
Dr. Agronin is a geriatric psychiatrist at Miami Jewish Health, and the author of the forthcoming book “The End of Old Age: Living a Longer, More Purposeful Life.” He can be reached at reports@wsj.com. ■