June 4, 2013 > In Alzheimer's shadow: Who cares for caregivers?
In Alzheimer's shadow: Who cares for caregivers?
By Cynthia McCormick, Cape Cod Times of Hyannis, Mass.
DENNIS, Mass. (AP), Apr 19 - As the caregiver for a husband with Alzheimer's disease, Gail McCarthy was on intimate terms with exhaustion and anxiety.
``I was so, so tired. I was sleep deprived, my doctors called it,'' said McCarthy, 71.
She was constantly on guard lest her husband, 76-year-old Paul McCarthy, attempt to cook or navigate the cellar stairs.
``He'd be out watering the flowers at 2 in the morning,'' she said about the retired Marlboro police officer. ``All my friends thought I was going to have a mental breakdown.''
Enter Molly Perdue, a psychologist with Hope at Home, an at-home therapy program run by HopeHealth, a nonprofit organization based in Hyannis that provides services for hospice, Alzheimer's and other patients.
Perdue started visiting the McCarthys at their Dennis home in March 2012 with the launch of the Hope at Home program.
``When I first met Molly, all I did was cry every time she came,'' McCarthy said.
McCarthy and her husband had been an active, companionable couple since marrying in 1997. They fished, danced and went lobstering together.
Paul was an avid runner, McCarthy said. Seeing him lose his mental faculties was almost unbearable.
``(Perdue) talked to me. Calmed me down. Told me I was going to be OK,'' McCarthy said.
Programs such as Hope at Home are needed more than ever to support caregivers and keep costs down as the Alzheimer's epidemic grows.
A study released earlier this month by the nonprofit RAND Corp. says Alzheimer's is the most expensive illness in the country, topping cancer and heart disease and costing families and society $157 billion to $215 billion a year.
The study said the biggest cost isn't medication - there are few treatments - but rather the hands-on care provided by family members, home health aides and nursing home staff.
The majority of Alzheimer's patients live with family members or even alone in senior housing, experts say.
``I can tell you there are a lot of spouses providing a lot of care,'' Perdue said.
It's difficult to know exactly how many of the afflicted are on Cape Cod.
The RAND report identified 4.1 million Americans suffering from Alzheimer's or other types of dementia.
The Alzheimer's Association chapter for Massachusetts and New Hampshire estimates there are 120,000 cases in Massachusetts.
That figure is based on extrapolations from a head count in Boston conducted years ago, said Paul Raia, the chapter's vice president of professional and clinical services. The organization doesn't keep count by city or county in Massachusetts, but David Rehm, president and CEO of HopeHealth, estimates there are 10,000 people on the Cape and Islands with Alzheimer's or other dementias.
``That's more people than in Boston. That's because of the demographic we have on the Cape,'' he said. ``This population is growing so dramatically, it's a problem that's going to overwhelm us if we don't deal with it.''
Lost caregiver wages and replacement costs for unpaid caregivers come to about $41,000 to $56,000 per year per patient, according to the report.
``For the first time, there's a realization there are costs associated that could be reduced with proper care and support,'' Rehm said.
Programs such as Hope at Home and HopeHealth's physician house calls program help keep costs down by preventing caregiver burnout and delaying institutionalization, said Carol Steinberg, acting CEO of the Alzheimer's Foundation of America.
Dealing with loved ones with cognitive impairment can ``really wear the caregiver down,'' she said.
Counselors at HopeHealth, formerly known as Hospice & Palliative Care of Cape Cod, already were doing phone consultations and then meeting with clients when necessary, Perdue said.
``This is a more in-depth counseling program,'' she said.
Perdue and a social worker split a caseload of about 45 clients, visiting caregivers to coach them in how to communicate with people with dementia and take care of themselves.
For instance, adult day care is a great respite program for caregivers and a social program for people with Alzheimer's or dementia, Perdue said.
But too often, Alzheimer's patients reject the idea, she said.
Hope at Home counselors coach caregivers on how to work around their charges' fears and resistance, Perdue said.
Nobody comes into the world knowing how to deal with dementia, she said. ``It's new territory.''
Studies show that caregivers of people with Alzheimer's have shorter life spans than other caregivers, said George Vradenburg, co-founder of USAgainstAlzheimers, a nonprofit organization advocating Alzheimer's treatment.
On average, patients live four to eight years after an Alzheimer's diagnosis, but they can live up to 20 years, experts say.
Early-stage behaviors can include wandering, repetitive talk and violent outbursts, Vradenburg said. Later, patients might not be able to feed, bathe or dress themselves or use the bathroom, he said.
``It's just exhausting,'' said Vradenburg, who was appointed by Congress to a new Commission on Long-Term Care expected to report this fall.
``Think of Alzheimer's disease as a fast-moving river,'' Raia said. It can be dammed up in certain places by keeping patients at home with good supports, he said.
Last year his organization got a grant from the Administration on Aging to train home health aides across the state in how to care for people with dementia.
His organization also has been involved in training senior housing managers to coordinate at-home care for tenants with Alzheimer's. ``It will result in cost savings all along the way,'' Raia said.
McCarthy said she felt guilty about being overwhelmed caring for her husband, particularly since she is a professional home health aide.
Perdue helped her understand the disease process and gain confidence, McCarthy said.
Perdue also helped her with practical issues, too, such as health insurance.
When McCarthy placed her husband in the Epoch Senior Healthcare of Harwich's nursing home after he had a stroke last summer, Perdue counseled her through the process.
Even now, Perdue drops by her home once in a while.
Hard as it was to accept help, it was worth it, McCarthy said. ``Now I'm good, and I'm helping people again.''