The first of the 70-million strong baby boomers will celebrate their 65th birthdays this year, and it’s estimated that one out of eight will suffer from Alzheimer’s disease, the most common form of dementia.
According to 2010 Alzheimer’s Disease Facts and Figures, a report by the Alzheimer’s Association, 5.3 million Americans, most of whom are 65 and over, suffer from the degenerative brain disease that affects memory, thinking and behavior.
Women, because they typically live longer, African-Americans and Hispanics are more likely to suffer from Alzheimer’s, which is expected to affect between 11 million and 16 million Americans by 2050.
“As those patients age, we expect ever-increasing numbers of Alzheimer’s disease,” said Dr. Clay Jackson, medical director of Methodist Hospice and Palliative Services. “Currently, it looks to be that if they live long enough, most will develop Alzheimer’s disease or some other type of dementia. The aging of the population represents a triumph of modern medicine in that we have longer life spans, but one of the unintended consequences is that we have a rapidly increasing incidence of Alzheimer’s in our geriatric population.”
About 120,000 Tennesseans currently suffer the disease, which presents the state’s estimated 252,000 unpaid caregivers, most of whom are family and friends of patients, with a host of difficult physical, emotional and financial challenges.
Jackson said up to 40 percent of caregivers of Alzheimer’s patients are likely to experience serious negative health outcomes that can include diabetes, high blood pressure, high cholesterol, obesity, strokes and heart attacks.
“There can be sleep deprivation from worrying about the patient or getting up in the middle of the night to change the patient or answer calls for distress,” Jackson said. “If the patient is ambulatory, they may go out of the home and get confused and become lost. All these things play into sleep deprivation.
“Physical pain may come from physically manipulating the patient, lifting them. Unlike a toddler who may weigh 20 pounds, patients may weigh 200 pounds. It’s a physical burden. Chronic stress, chronic depression, chronic sleep deprivation and chronic pain all drive co-inflammatory chemicals in the body – the same kind of chemicals that are elevated in advanced cancer – which cause all kinds of downstream effects that are negative for the patient.”
Depression is also common among caregivers, who experience psychological effects related to of the reversal of parenting roles.
The typical caregiver is a woman, usually the patient’s oldest daughter, and many are what are called “sandwich generation caregivers,” meaning they’re raising children while caring for an Alzheimer’s-afflicted parent.
Many caregivers are forced to reduce their work hours, turn down promotions, and even quit their jobs, resulting in the loss of income and benefits.
According to the Alzheimer’s Association report, Tennessee’s more than 252,000 caregivers provided more than $3 billion in unpaid care in 2009.
Nationwide, the estimated economic value of the care provided by unpaid Alzheimer’s caregivers was $144 billion that year.
Tammy DeNiro is program coordinator for the Alzheimer’s Association-Mid-South chapter, which often serves as the first point of contact for newly diagnosed patients and their families.
The organization provides a host of resources, including introduction to dementia classes, physician and adult day care referrals, caregiver conferences, consulting on ways to better handle patient behavior, and trial match program to involve patients in clinical trials.
DeNiro said it costs about $100,000 a year to care for someone with the disease, and for the average caregiver, help can be scarce and hard to find.
“To be honest, there’s not a whole lot, which is part of the problem,” DeNiro said. “The Aging Commission of the Mid-South has some things available. You can get a little bit of respite for maybe a couple of hours per week if you qualify. But there’s such a long waiting list over there, they can’t serve everybody. So, basically it falls to the caregiver.
“We’re here to educate the caregiver on how to better care for these folks at home because most people can’t afford having someone come into their home at $12 to $16 an hour. Adult day care is a great resource for respite, but it’s not covered and many people can’t afford that either.”
Some services, such as hospice, are covered by Medicare or private insurance. And while hospice services may provide some care for months at a time, they’re unable to provide round-the-clock care-giving.
Jackson said that in addition to the Memphis area’s high poverty rate, aspects of the Southern culture also pose challenges to caregivers.
“We have a reputation for being very communal and reaching out to others, but we also have a tendency to want to conceal our challenges or find it not socially acceptable to ask for help,” he said. “It takes community and family support to enable us as individuals to properly care for our loved ones and we should not be ashamed or embarrassed to ask for help.”
Currently, the only treatment for Alzheimer’s disease is drugs that temporarily slow its degenerative cognitive effects.
“The search for medication that can reverse the effects of Alzheimer’s or actually improve behavioral disturbances is probably what we call the holy grail of neuroscience right now,” said Jackson.
“We continue to research, but right now Alzheimer’s remains an incurable illness that is chronic and can be devastating to patients and their loved ones.”