Skyrocketing Alzheimer's rates to burden world's caregivers, study says

Alzheimer's rates are expected to surge worldwide due to the aging population, and new report says that will take a heavy toll on an already-depleted caregiver workforce.

The new report from Alzheimer's Disease International says national plans need to be implemented to address growing disease rates, a shortage of caregivers and a lack of support from family members of those with dementia.

"People with dementia have special needs. Compared with other long-term care users they need more personal care, more hours of care, and more supervision, all of which is associated with greater strain on caregivers, and higher costs," the report's author, Dr. Martin Prince, a professor at King's College London's Institute of Psychiatry, said in a statement. "We need to value the unpaid contribution of family caregivers more, and reward paid caregivers better. We can build quality into our care systems, but to do so while containing costs and achieving equity of access for all will be a challenge."

More than 35 million people around the world live with dementia, including its most common form Alzheimer's disease. That number is expected to more than triple by 2050, to 115 million people with dementia.

Alzheimer's Disease International, which is comprised of 79 international Alzheimer's advocacy groups, teamed up with the World Health Organization to develop the report using international data.

The United States in particular is expected to see a tripling in rates by 2050, a March report from the Alzheimer's Association found, with the number of affected Americans jumping from 5.2 million now to more than 13.8 million over the next few decades.

The report shows that "informal" care offered by family and friends of those with dementia likely won't be enough. Currently, about 13 percent of people older than 60 -- not just those with dementia -- require long-term care, which includes daily assistance and monitoring. That's more than 101 million people now, and that will jump to 277 million people by 2050.

With dementia, more special care needs present including more hours of care and more supervision, which can increase strain on caregivers while adding more costs. They comprise about half of need for long-term care: An estimated 80 percent of people in nursing homes have some form of dementia.

What's more, care needs for Alzheimer's patients often start earlier in the course of disease, and evolve over time, requiring more planning and coordination with services. The report noted that supporting "living well with dementia" is a major challenge across the care journey.

As is stands, about $600 billion is currently spent on dementia care. The report's authors say if more money was spent on research that looks at dementia prevention, treatment and care, it could lower these care costs down the road.

"This investment is essential to mitigate the impact of the global dementia epidemic on future long-term care needs, and improve quality of care," they wrote.

The report calls for sweeping changes on the caregiving infrastructure, and more improvements in quality of care that, importantly, is more affordable. The authors recommend systems to be put in place that oversee and monitor quality of dementia care in all settings, not just in nursing homes and facilities but also throughout the community. People with dementia and their caregivers should be allowed to choose the care at all stages of their dementia journeys, the authors added.

More training must also be given to caregivers, and they need to get paid -- even those caring in more informal settings. It can provide a reward incentive to help encourage people to continue caring for their loved ones, the report recommended.

"The future cost of long-term care will be affordable, but only if governments act now to implement required policies and reforms," wrote the authors.

About 40 percent of American adults currently care for someone with serious health issues, a Pew Research Council survey revealed in June.

An April study in the New England Journal of Medicine estimated the yearly cost of caring for someone with dementia at about $70,000. People caring for family members or friends long distance fared worse. On average, they spent an extra $10,000 out of pocket each year for expenses, like for travel.

The Alzheimer's Association estimates that there are 2.3 million Americans currently providing long-distance care for a relative or friend.

Compounding the care burden, aging Americans may not be taking any steps to plan for their future care needs. An Associated Press survey in April found only a quarter of responders over 40 think they'll need care during their senior years, and the majority of responders expected their families to step up long-term carein the event they need it. But, more than six in 10 of survey responders have not discussed this possibility with their families.

"The expectation that your family is going to be there when you need them often doesn't mean they understand the full extent of what the job of caregiving will be," Susan Reinhard, a nurse who directs the Public Policy Institute at AARP, said at the time. "Your survey is pointing out a problem for not just people approaching the need for long-term care, but for family members who will be expected to take on the huge responsibility of providing care.

The full report, the World Alzheimer Report 2013, was published Sept. 20 on Alzheimer's Disease International's website.

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