When patients are diagnosed with Alzheimer’s disease and forced to grapple with the fact that a lifetime of memories are going to steadily evaporate, counselors sometimes suggest that patients write down their recollections and recount their lives.
On the one hand, it’s a resource they can leave behind for their children and grandchildren. But it’s also a way to validate themselves when they are at their most vulnerable and distraught.
“It gives them an idea of how much they’ve accomplished in life,” said Thomas Baumgartner Jr., a psychiatric social worker with the University of Pittsburgh’s Alzheimer Disease Research Center. “Remembering that shows that he or she had some worth.”
Being diagnosed with Alzheimer’s disease, unlike most other afflictions, carries a horrible, unmistakable ring of finality. People can sometimes rebound from strokes, manage heart disease or conquer cancer. Not so with Alzheimer’s. Until a cure is found – and there’s no indication that one will be materializing anytime soon – patients discovering they have become one of the roughly 5 million Americans who have the disease must confront the fact that it is a slow-motion death sentence.
Their memories will fade, their cognitive skills will wither and, eventually, they will die.
“A lot of patients, a lot of families, they’ve already had the suspicion for some time,” according to Andrea Synowiec, a neurologist with the Allegheny Neurological Association who practices in Peters Township. “It’s shocking and it’s a loss. There are phases you go through in coming to terms with a difficult thing.”
Grappling with that reality often requires intervention by a counselor who works with the patient and their families. After an individual is diagnosed with Alzheimer’s, they are typically run through an assessment by a psychologist, social worker or other professional to determine the state of their mental and physical health, age, education, family background and other variables. These will help determine how treatment should be approached. For instance, dealing with an 85-year-old, freshly diagnosed Alzheimer’s patient is an entirely different game than a 55-year-old with an early-onset form of the disease. The former might be able to accept that they had a good run, while the latter might have anticipated at least another couple of decades of good health and vitality.
Once the assessment is completed, the type, frequency and setting for counseling is usually set.
“It can be anything,” said Ann McAllister, a psychiatrist at Washington Hospital. “It can be tailored to what the patient needs.”
And how long should counseling last?
“As long as it’s needed,” she said. “We talk about day-to-day things. When you get to know a family very well, there can be a lot of healing.”
Baumgartner pointed out that the type of therapy hinges on the level of impairment. “Really, letting that person vent is important,” he said. Feelings of guilt, depression and diminished self-worth can accompany an Alzheimer’s diagnosis, along with a lot of “what-ifs.” Because its roots are still so mysterious, some patients are left to wonder if they could have done anything to prevent it. McAllister said one of her aunts, after being told she had Alzheimer’s disease, raged about the aluminum pots she had used for cooking. Others wonder about decades-old head injuries.
One-on-one counseling can also be mixed with family and group sessions, as well as long-term treatment at residential centers. Patients and their families are also encouraged to seek out online support groups, where they can acquire information and gain moral support.
Issues like increasing confusion and changes in personality can be dealt with in counseling sessions. Medication can help ease some of the agitation, delusions and hallucinations that come as Alzheimer’s tightens its grasp, but therapy can also help patients develop a better understanding of these unnerving episodes.
“You can talk to a patient about how fearful that state was,” McAllister said. “You can reinforce to a patient that what they’ve experienced wasn’t real.”
In counseling, family members can also be forthcoming with their concerns – the safety of a loved one, whether a patient is vulnerable to scam artists, or a general feeling, as Baumgartner put it, that “this is not what I signed up for.”
Some patients also try to meet the disease toe-to-toe by reading as much as they can about the disease and trying to comprehend it before it fully nibbles away at their ability to do so.
“There continues to be a thirst for knowledge about things,” McAllister said. “Even in the end.”