AlzU Blog

Stepping Into The Caregiver Role Sooner in Life Than Expected

When family members are called on to care for a loved one with Alzheimer’s disease (AD) early in life, this is what researchers call an “off-time event.”  Simply put, it’s when one of life’s expected experiences (such as taking care of our parents in their old age), comes at an unexpected time. 

According to the New York Times, the average age for a caregiver is 55, and the average care recipient (the person in need of intensive help from a caregiver) is 80 or older.  The necessity for family caregiving can occur anytime, from an accident or illness, but most people do not expect to be needed as a full-time caregiver for parents early in life. Donna Cohen, a psychologist and gerontologist(physician who specializes in the care of elderly patients) said, “People aren’t really prepared to take on the responsibility, it comes when you’re still climbing to the summit in your own life.”

But, many younger people are called on to help with the daily caregiving tasks for a family member.  In fact, according to the National Academy of Sciences, of individuals providing care for a senior loved one, 15% were aged 20 to 44.  These statistics were calculated for those receiving care at home, and do not include nursing home residents.

Caregiving brings with it many challenges, regardless of the age of the caregiver, but for the younger family member who provides care, the biggest challenge is reportedly the interference with educational goals, said Feylyn Lewis, a doctoral candidate at the University of Birmingham in England.  Lewis wrote a thesis on 18 to 25-year-old caregivers.

Younger caregivers tend to have many stressors, including demands of time for career and school. Many report they had to cut back on hours, drop out of college, or even turn down promotions.  Most jobs will only tolerate employees taking time off for so long, before hard decisions must be made.  When hours are lost on the job, it can spiral downward quickly, causing financial strain and other stressors.  Younger caregivers who have small kids at home will likely feel the constraints of time even more than those who are single.  Carol Whitlatch, an assistant director for research at the Benjamin Rose Institute in Cleveland stated, “They need to be there for their kids who are still dependent, and they have parents who are growing more dependent.”

Perhaps the most difficult thing, overall for younger caregivers is the absence of a regular network of friends.  Devoting full time care to parents, younger caregivers oftentimes turn down social invitations due to daily responsibilities.  The longer a person is in the caregiving role, the more loneliness and isolation becomes common.  Some younger caregivers feel they don’t have much to contribute when socializing with people their own age because everything in their existence pretty much revolves around caregiving. 

One younger caregiver named Colleen Kavanaugh told the New York Times interviewer that she quickly discovered that the people she could rely on most for support, were other caregivers at her dad’s dementia unit; the only issue was that most of them were much older than Kavanaugh.  “All my friends were in their 50s to 80s,” she said.  “You don’t have contemporaries to confide in.”

Dr. Cohen is concerned that younger caregivers “may suffer from mental (and physical) health issues if they are too cut off socially, she commented, “One way to discharge anger and reduce stress is to be able to talk about it.” Cohen decided to push for support groups for younger caregivers, possibly on social media.  People who will be able to best support Kavanaugh and others like her are those who are also caregivers.  She started a weekly Twitter chat group at #LCSM Chat.

It’s important for caregivers to find ways to get out of the house, get some respite care, and get involved in enjoyable activities and hobbies.  Seeking out a community support network is a vital aspect of long-term caregiving.

1. Span, P.  (2017, March) Pressed into Caregiving Sooner Than Expected. The New York Times.

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