Cost of Alzheimer’s High in Dollars and Caregiver Devotion

As baby boomers age, the cost of caring for those stricken with Alzheimer’s Disease has nowhere to go but up. By 2050, the cost of treating Alzheimer’s is likely to rise from $172 billion per year in 2010 to more than $1 trillion per year in 2050.  The disease could cost Americans $20 trillion over the next few decades, according to a report from the Alzheimer’s Association.

“We saw it coming.  We knew the numbers were going to be high in the number of people getting the disease.  We as an organization have been preparing for this,” said Nancy Rainwater, vice president of communications for the Alzheimer’s Association Greater Illinois chapter.  “But to think of trillions of dollars…just the amount of money was pretty staggering.”

The statistics were calculated using an analytical model based on data from research and national surveys.  Part of the problem lies in how successful treatment has become for other diseases, Rainwater said.  “We’re living longer, so that has a lot to do with it,” she said.  “There has been so much work in other diseases – cancer, diabetes, heart disease – and people are surviving those diseases.  But then there’s a higher risk, as people age, of getting Alzheimer’s.  You look at statistics of those diseases, and the rates of death have all declined, whereas Alzheimer’s disease has increased.”

Researchers believe that the number of Americans aged 65 and older with Alzheimer’s will more than double to 13.5 million by 2050 as the population ages.  By the middle of the 21st century, nearly 50 percent of people with the disease will be in its most severe – and costly – stage.  “People in the earlier stages don’t necessarily need as much care or support,” said Darby Morhardt, social worker and research associate professor at Northwestern University’s Cognitive Neurology and Alzheimer’s Disease Center.  “But as they deteriorate, as they decline, they have more and more difficulty managing their daily care, so that care needs to be provided by someone.  Often that’s where most of the money is spent, on those last years.”

What’s most stunning is Alzheimer’s human and financial toll. According to the Alzheimer’s Association’s 2011 Facts and Figures Report, 5.4 million Americans (one in eight older Americans) suffer from the debilitating illness.  Joy Johnston of Atlanta knows how difficult caring for a parent with Alzheimer’s can be.  Her father, Patrick, like more than five million other Americans, had been diagnosed with Alzheimer’s Disease.  “It can be heartbreaking at times,” Joy said in reference to caring for her father.  “You have to relearn your relationship with your loved one.”  Caring for a family member with Alzheimer’s can take a profound financial and emotional toll.  Nearly 15 million Americans are unpaid caregivers for those sick with dementia, according to the Alzheimer’s Association.  Do the math, and it adds up to about 17 billion hours of unpaid care valued at $202 billion in 2010 alone.

To help with the staggering cost of care, the Obama Administration has included $26 million in the proposed 2013 budget.  That money will go to education, outreach and support for families affected by the disease.

“Caregivers are often in a situation where their feelings and what they have to do are in conflict,” Dr. Peter Rabins said.  “That’s very hard for most of us because we’ve related with people that we love in a certain way. The disease forces a change in that relationship.”  Rabins, the director of psychiatry at Johns Hopkins School of Medicine, notes that medical bills can pile up quickly.  “That’s a tremendous financial challenge for many families.” Rabins said.

Money isn’t the only sticking point.  The emotional costs take root as soon as dementia is diagnosed.  Family members often begin grieving a death of someone who is still physically present but disappearing mentally.  “Those feelings of loss can become quite chronic,” Rabins says.

“It’s the sort of crisis that policymakers, clinicians know is happening,” said Len Fishman, CEO of Hebrew Senior Life, the largest provider of elder care services in Massachusetts.  “I don’t think the country has absorbed it yet and in a couple of decades when the number of Alzheimer’s cases has doubled, people will look back and say,  ‘Why didn’t we know this was coming?’”

National statistics suggest that it takes an average three to four people to help care for each Alzheimer’s patient living at home; approximately 11 million Americans are currently helping to care for the estimated 70 percent of Alzheimer’s patients who are able to be at home.  That statistic does not include paid caregivers.

Although Medicaid pays for Alzheimer’s day programs for some low-income seniors; Medicare does not.  As a result, many patients and their families must pay privately for Alzheimer’s care until they’ve spent enough money to qualify for Medicaid.  Medicaid does pay for long-term nursing home care, but not the less restrictive assisted living for seniors.

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