Published in Pawtucket Times, May 10, 2013
While many view Alzheimer’s Dementia as a devastating disease afflicting persons well into their later retirement years, Jacob Vinton (“Jake”) knows better than that. The 57-year-old is one of an estimated 200,000 persons (out of five million Americans) who today have been diagnosed with early onset Alzheimer’s.
Discovering the Truth
Jake’s physical deterioration derailed any plans to reenter the workforce, forcing him into early retirement. Because of his age, he will not be eligible for the full range of federal retirement and pension benefits that he could be eligible to receive if he waited to retire at age 65.
In his mid-50s, the middle-aged man experienced early signs of cognitive impairment that included memory loss, specifically not remembering conversations or previous events, or the names of people and things. As the disease progressed, Jake gave up his car keys.
In 2006, Jake, chose to became a stay-at-home father, taking care of his two teenage sons, while his wife, Karen, a clinical psychologist, became the family breadwinner, working as a public health researcher for a national nonprofit consulting firm.
Before making this decision, Jake, an electrical engineer who graduated from Trinity College in Hartford, Connecticut, had decided not to reenter the job market, or even to apply for graduate school. Looking back his wife believes that his declining “planning and organizational” skills played a key role in his decision.
Karen, 54, never attributed her husband’s occasional loss of words to be due to a very serious, devastating cognitive condition. Warning signs became obvious to her when Jake could not remember a conversation that had taken place 15 minutes earlier.
For Jake, a daily walk with the family’s rescue golden doodle, down a very familiar walking path, gave him a startling “wake up call,” that something was definitely wrong. He broke down, crying when he realized that he was lost and did not recognize his surrounding neighborhood. The emotionally distraught man would ultimately get home through the assistance of others in the neighborhood.
Being a professional researcher, Karen tiressley sought out answers to explain her husband’s cognitive decline through professional contacts in the medical field. After a year medical appointments that included multiple diagnostic tests (there is no one definitive test) by a neuropsychologist and a neurologist who specialized in Alzheimer’s disease, his wife’s worst fears were positively confirmed – Jake definitely had early onset Alzheimer’s Dementia.
Karen was not shocked by the medical findings. Alzheimer’s Dementia has limited pharmacological treatments that slow but do not stop the disease’s progression. Although Jake was not happy with his medical diagnosis, he strangely felt relieved now knowing the cause of his memory slips and why he was so “loopy,” as he put it.
Following the 2011 medical diagnosis, the Foxboro couple made a joint decision to relocate to the City of Providence. “Providence offered more medical and support services and also allowed him to walk to his volunteer activities and classes,” Karen said.
Loving Friends at Hamilton House
Jake also began taking Aricept and Namenda, prescription medications used to treat mild, moderate, even severe Alzheimer’s disease. Over time with adjustments to the dose, “it has made a big different in my thinking,” Jake remarked.
But, every morning has become time-consuming when Jake needs to be oriented to the days activities, reports his wife. “He can be told that he has an art class at Hamilton House but he’ll forget it,” she says, adding that even if you write that down he might just loose that piece of paper.
Even before his symptoms of Alzheimer’s intensified, Jake did a little carpentry and painting at Hamilton House, a center for active adults age 55 and over on Providence’s East Side, located very close to his home. Today, still does his maintenance chores, but attends art classes and other activities at the French Chateau-style home.
“I am just the kid here,” jokes Jake, noting that “everyone keeps an eye on me” during his three daily visits each week.
Director Jessica Haley, of Hamilton House, says that Jake is the only person with early onset Alzheimer’s among its 300 members. “He’s comfortable here because we’re not a senior center but an adult learning exchange,” she says.
“People love his sense of humor, and he just hugs everybody, says Haley.
When not at Hamilton House, Jake also spends time at the Eastside Mount Hope YMCA. “It’s like playtime,” he says, a place where he can lift weights and exercise. He also regularly attends Live & Learn, a weekly social engagement program held at this YMCA, run by the Alzheimer’s Association, Rhode Island Chapter. This program is offered in five different locations through out (at the Woonsocket Harris Library).
But as the disease progresses, forgetting little details and names continues to frustrate Jake. As to coping, “He rolls with the punches and goes with the flow,” says his supportive wife, noting that “he really is an easygoing person.” However, Jake believes that his daily walking helps him to think more clearly. “I try to do the best I can, not wanting to be a burden on my wife and family,” he say.
So far he seems not to be a burden to anyone.
Finding Needed Support and Resources
Karen keeps tabs on her spouse, making sure he does not get lost when he walks their dog. “This has not happened in a long time,” he says. She also has taken over the household finances and has power of attorney over his legal issues. All of these changes took an enormous amount of time and effort.
She has turned to a very large network of friends who could help. “You should be not shy in asking for assistance when you need it,” she adds.
According to Annie Murphy, Outreach Coordinator for the Live & Learn Program, at the Alzheimer’s Association-RI Chapter, out of 24,000 people in the Ocean State with Alzheimer’s disease, there is about 900 diagnosed under the age 65.
Early intervention is extremely important for those afflicted with early onset Alzheimer’s, says Annie, noting that a formal diagnosis can allow for earlier treatment.
“We know that medications approved to manage the symptoms of Alzheimer’s are more effective if they are given in the earlier stages of the disease,” she says.
Once diagnosed, a person has an opportunity to participate in their future care planning, states Annie. “This gives them an opportunity to be able to learn what they are living with and to be able to personally manage this disease along with their care partners,” she adds.
A “healthy, active, lifestyle combined with proper nutrition and appropriate medication treatment” is important for those living with this disease, notes Annie. “It won’t slow down the progression, but improves the quality of life.”
The Alzheimers Association, Rhode Island Chapter, offers a new education series, “Living with Alzheimer’s,” geared to persons who are in their early stages of this disease and their care partners. The nonprofit’s website ( http://www.alz.org/ri/ ) also provides information about the debilitating Alzheimer’s and other related dementias, available resources, services and support groups, that are offered free to person with Alzheimer’s and their families.
In addition, she notes the offering of a new support group for people in the early stages of Alzheimer’s at her office in Providence.
Annie also notes that information related to the nonprofit’s annual caregiver’s conference at the Crown Plaza, in Warwick, on June 25, 2013, is also posted on the nonprofit group’s website. There is no registration fee and one of the workshops specifically addresses younger onset Alzheimer’s issues.
Herb Weiss, LRI ’12, is a Pawtucket-based writer covering aging, health care and medical issues. He can be reached at firstname.lastname@example.org.