Families Dealing with Dementia Need to Understand the Perils Ahead

If you are part of a family dealing with dementia, you know what a bewildering and painful journey it can often be. Part of the great and unanticipated tragedy of dementia is the emotional and relational damage it can wreak, not just on the one with the illness, but on loved ones as well.  In the words of geriatric psychiatrist Marc Agronin, writing in the Wall Street Journal, “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.”

Dr. Agronin is the author of this powerful and insightful article that appeared in the Journal a few weeks ago. We want to share it with our AgingOptions Blog readers and radio listeners because we know from our interaction with many of you that you have struggled with the unexpected pain that having a loved one with dementia causes for siblings trying to come to grips with this unpredictable disease. “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,” Dr. Agronin writes in the Wall Street Journal. Dementia, he asserts, is usually chronic, with symptoms that will only get worse. On top of that, today’s health care system with its lack of geriatricians and its tendency to have medical specialists who don’t communicate with each other, working in their individual silos, makes the challenge for families even greater.

“In the face of these challenges, the families of individuals with dementia struggle to maintain emotional equilibrium along the way,” says Agronin, “especially 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.”  But the doctor is quick to add that it doesn’t have to be this way. “If families understand the perils, they can navigate them without imploding,” he states.

We know one of the burdens, of course, is the often devastating economic toll that serving as a caregiver for someone with dementia can demand. “Families of persons with dementia spend billions of dollars—thousands a month per household—on health care, supplies and paid caregivers,” Dr. Agronin says.  According to the Alzheimer’s Association, the average unpaid caregiver, typically an adult daughter, works almost 22 hours a week on the loved one’s behalf.  Factor in lost wages, reduced productivity and resulting impact on retirement savings and the total adverse lifetime financial impact for a typical caregiver quickly tops $300,000. Yet, as ominous as that sounds, Dr. Agronin writing in the Journal says that “the economic toll often pales next to the emotional one.”  This emotional burden is especially hard on adult siblings who find themselves thrust by a parent’s illness into completely uncharted territory.

In a particularly poignant section of the Wall Street Journal report, Dr. Agronin lists some of the reactions he has witnessed among siblings to the pain of a parent with dementia. “I have seen people, for instance, who were simply not in a position to take care of a parent with dementia,” he writes. “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. 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.”  Suddenly, Agronin suggests, siblings who have respected and admired one another from a reasonable distance are forced into painful interactions that can literally cause relationships to break apart.

There’s much more to this important article and we recommend you take the time to read it (once again, here’s the link.)  But before we leave this topic, we want to paraphrase Dr. Agronin’s recommendations for dealing with what he calls “a terrible disease that can wreak havoc on all those who must deal with it.”  The keys, he suggests, are assessment, communication and planning.

  • First, families must know precisely what they are dealing with. “This requires a comprehensive baseline assessment by an expert in dementia, and regular monitoring by both medical and behavioral specialists,” says Dr. Agronin. This puts everybody on the same page as far as knowing what exactly is going on.
  • “Second,” he says, “the caregiving family needs to meet early on and establish basic goals and ground rules.” How will they divide responsibilities?  What if someone can’t sustain their role?  How much financial outlay can they afford?  Caregivers need to coordinate a common plan for the type of care and the roles that each can play.
  • “A third and crucial step,” Agronin writes, “is to assign a point person for coordinating daily care and decision making.” This can be a third party such as a geriatric care manager or other professional if that’s best for family dynamics. This person can serve as a mediator for disputes and in extreme cases can be court-appointed.

Families need to understand, Dr. Agronin concludes, that caregiving for one with dementia can last an average of 8 to 10 years.  It’s “a long journey [that] requires constant learning, renewal and reinvention to survive.” But while dementia brings great heartbreak, it can also “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.”

Planning ahead for a devastating illness may be tough for most of us to contemplate, and we may hope to avoid illnesses such as dementia in our future. But one thing is certain: we can’t avoid growing older, and that means we must do a better job of planning for retirement. If your goal is a secure and fruitful future, with your assets protected and your wishes honored, you’ll never get there if you focus merely on any one aspect of retirement planning, such as finances or health insurance. At AgingOptions we advocate an approach we call LifePlanning, one in which all the essential elements of retirement mesh together: your financial plan, your medical coverage, your legal protection, your housing choices, and your family communication. A LifePlan becomes your blueprint allowing you to build the retirement you’ve always dreamed of. It’s easy to find out more, and there’s no cost or obligation: plan now to join AgingOption’s Rajiv Nagaich at an upcoming LifePlanning Seminar. Click here for details, and then register online or contact us by phone. It will be our pleasure to welcome you to an AgingOptions LifePlanning Seminar.

(originally reported at www.wsj.com)

 

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Posted in Alzheimer’s / Dementia, Articles, Executor, Family, Financial, Health, News, Power of Attorney.

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