University of Pittsburgh psychiatry professor Richard Schulz has been one of the nation’s foremost researchers on caregiving stress for
The number of people with dementia in the United States is estimated to be 5.3 million and growing, and the impact of the disease is even greater because its toll on caregivers is more drastic than is the case with other afflictions.
The most common and widely known form of dementia is Alzheimer’s, but many other families are affected by cognitive decline from similar diseases such as vascular dementia, Parkinson’s and dementia with Lewy bodies.
Alzheimer’s is the sixth-leading cause of death in America. It affects the older population most, with the incidence of the disease growing for each older age group. The chances of having Alzheimer’s are 1 in 9 for the population over age 65 and 1 in 3 for those 85 and above, according to the Alzheimer’s Association. About 5 percent of those with the disease are affected younger than 65, with what’s known as “younger-onset” or “early-onset” Alzheimer’s or dementia.
The Post-Gazette’s Gary Rotstein and Steve Mellon spent six years following the decline of one early-onset patient, former airline pilot Alan Romatowski of Butler County, to explain the scope of the disease in a series. View it here.
The cause of Alzheimer’s has not been pinpointed, complicating the task of finding a treatment that stops or reverses the damage done to brain cells. A group of medications is known at best only to slow progress of the disease for a time, and they work to varying extent with each individual. Research breakthroughs on Alzheimer’s have been far slower in coming than had been projected at the start of the century.
Dementia affects all of its victims differently, in both the nature of symptoms and the pace at which they progress. Many people have the disease for years before diagnosis while finding ways to compensate for short-term memory loss or other lapses; after diagnosis it often lasts four to eight years as impairments worsen.
Many people have occasional memory lapses as they age, laughing off their “senior moment”; signs of actual dementia are far more frequent and problematic than that. Among common symptoms other than memory loss are frequent confusion; a decline in communication skills; inability to reason; nervous agitation; increased difficulty recognizing common objects; repetition such as asking the same questions over and over; wandering; and late-day restlessness known as “sundowning.”
In most cases, Alzheimer’s is not directly inherited, though a genetic component is thought to increase the risk for those with family histories of the disease.
The disease is more difficult to diagnose than other medical maladies, and diagnoses often come from ruling out other causes when mental decline occurs. When memory impairments on significant matters first become noticeable, it’s worth bringing those up with the family physician, who might then make referral to a specialist such as a neurologist.
Stress on caregivers comes in a variety of ways. Dementia patients may retain their physical health for years -- enabling them to go where and do what they want, even at a time they may pose a risk to themselves or others. Mental stress may rise from having a loved one who constantly repeats the same question, shadows the caregiver and creates havoc around the household. As independent functioning declines, such as losing the ability to feed or bathe oneself or to use the bathroom when needed, burdens only increase.
Experts advise caregivers to lean on relatives, friends and neighbors for help when possible, so as not to exhaust themselves. The Alzheimer’s Association sponsors support groups that can be helpful in blowing off steam, so as not to take out frustrations on the patients themselves.
The Pennsylvania Department of Aging also has a family caregiver program offering modest assistance such as respite breaks and payment for essential supplies such as adult diapers. Families qualify for that based on need and income, with more information available through the Area Agency on Aging (412-350-5460 in Allegheny County) or at this website.
At some point in the progression of the disease, a caregiver may find it no longer viable to keep the person at home. A variety of facilities advertise themselves as offering specialized care for dementia patients, including special staff training, designs intended to avoid confusion and locking features to prevent elopement. Such facilities can be licensed as either nursing homes, assisted living centers or personal care homes in Pennsylvania, and it is best to visit them personally to see what they have to offer. Other than for Medicaid-funded nursing home care for individuals with modest income and assets, there is little government assistance to families for such placements. Here is one list of such local options.
The Pittsburgh area benefits from having one of the 31 federally supported Alzheimer’s Disease Research Centers in the country, based at UPMC Montefiore. Teams of medical specialists and social workers there work with families by offering diagnosis and counseling about the disease, with patients provided opportunities to take part in various research projects designed to treat or prevent dementia.
For information on scheduling a free ADRC evaluation, call 412-692-2700 or use the website below.
University of Pittsburgh Alzheimer Disease Research Center: http://www.adrc.pitt.edu/
The national Alzheimer’s Association provides a 24-hour helpline at 1-800-272-3900 and a wealth of background information on dementia: http://www.alz.org/
The Alzheimer’s Association Greater Pennsylvania chapter provides no-cost local counseling, educational programs and support groups to assist affected families: http://www.alz.org/pa/
Geriatric psychiatrist Charles “Chip” Reynolds III has for decades been one of Pittsburgh’s and the nation’s leading scholars and
Rachael Wonderlin, 28, is a gerontologist and dementia care consultant who has been a staff member specializing in care of those with
Pennsylvania Democrat has elevated stature now on Senate aging committee, but it’s the GOP that’s in charge in Washington.