Family Caregiver Blog

The New Face of Family Caregiving

By Sally Abrahms

The role, look and capabilities of the family caregiver are changing. New technology, tasks and ways of thinking are driving this change, along with shifting demographics. The expectations are higher, and, in many cases, so is the stress level.

John Schall, executive director of the advocacy group Caregiver Action Network (CAN) and member of the Family Caregiver Council, observes that “one of the biggest changes is how many men and millennials are now family caregivers.” Today, 40 percent are men; one in four informal caregivers is a millennial.

No matter what gender or age, the “jobs” they do can feel daunting. Family caregivers are increasingly expected to handle complex and complicated tasks. Many sorely regret not having an M.D. or R.N. after their name. Hospital stays have become shorter, which can mean that loved ones are discharged earlier and sicker.

Often with little, if any, instruction or experience, adult children or spouses may have to dress wounds, give injections, dispense multiple pills several times a day or operate specialized medical equipment. (Nearly 46 percent of people ages 70-79 take at least five prescriptions a day. And that is just 70-79 year-olds!)

Family caregivers can be instrumental in preventing hospital readmissions. Steering clear of the ER and those beds upstairs cuts down on costs, not to mention heartache.

A better understanding of caregivers

Caregivers are with the patient more than anyone else—sometimes ‘round the clock—and can best report side effects from medication, new symptoms or improved or worsening health.

Today, there is increased recognition that family caregivers need to be partners in the health care process. The federal government also sees this, and in January 2018, signed into law the RAISE Family Caregivers Act that will help develop a strategy to recognize and support this group. (RAISE stands for Recognize, Assist, Include, Support & Engage.)

Until recently, many family members who helped their parents or grandparents thought of themselves as “just” sons, daughters, grandchildren, nieces, spouses or partners—even though the average number of hours of weekly care they provide is hefty. (Those weekly hours range from 19.3 for 25-44 year-olds to 34.5 hours for age 75+.).

Fortunately, unpaid caregivers have begun to self-identify. Advocacy groups have launched campaigns to let caregivers know that’s what they are; there have also been a flurry of articles on the topic.

This is helpful! Once they realize this, grandsons, daughters, spouses and friends can reach out for support. (Online forums, websites and organizations offer informal caregivers tips, strategies, and an opportunity to vent and find out about resources.)

Increasingly, people appreciate the wisdom of self-care. That means understanding that “Me” time is essential, not selfish, and that guilt and anger, for example, are normal feelings of caregivers. But that doesn’t mean they won’t still be conflicted.

Focusing on a caregiver’s own health is coming into sharper view, too. Recent studies show the emotional and physical toll of taking on the role. (A wife caring for a husband is six times more likely to suffer depression and anxiety than a non-caregiving wife. And, forty-five percent of caregivers report chronic conditions, including heart disease, cancer, diabetes and arthritis versus 24 percent for non-caregivers. )

More working caregivers

As people live longer, they also work longer. And many do or will take care of a parent, friend, spouse or other family member.

A National Alliance for Caregiving/AARP study found that 60 percent of informal caregivers were employed at some point in 2015. The stress of two “jobs,”—work and caregiving—can impact productivity and an employee’s mental and physical health.

The study showed that 61 percent of workers have had to cut back or change their hours (arriving to work early or late), take a leave of absence or turn down a promotion. The fallout is lost wages, health insurance, retirement savings and Social Security.

And more: Just half of employers provide flexible schedules or sick days. An even smaller number offer paid leave, employee assistance programs and telecommuting. This will have to change in the near future.

Absent caregivers mean lost productivity, and when workers quit, there can be hefty recruitment costs. businesses, we’re likely to see more accommodations, programs and supports for working caregivers and a better understanding of their situation.

Focus on dementia

There’s also better understanding of what comforts and interests people with dementia. It includes:

  • Furry, interactive pets like the Joy For All Companion dog and cats or the seal Paro. Other companies also make cuddly, life-like animals. It used to be that people thought these “toys” were demeaning. A shifting mindset thinks that if it’s comforting, enjoyable or reduces anxiety, then why not?
  • More interest in “Creative Aging” for older adults, like painting or singing, watching snippets of famous scenes from old-time movies or visiting an art museum. This kind of stimulation can improve well-being, concentration and behavior.
  • Different kinds of therapies (aroma therapy and reminiscence therapy), set-ups and strategies: memory villages, music from a parent or spouse’s formative years, dancing and specially designed puzzles for memory loss.
  • The emergence of memory cafes and dementia-friendly communities for both caregivers and those with dementia. Activities and events provide opportunities for family caregivers to do something pleasurable with their loved ones outside their caregiving role.

Tapping into technology

Apps and tools to help caregivers stay on top of their responsibilities and make day-to-day life easier—managing medication, coordinating care, monitoring vital signs, keeping track of a wandering parent via GPS or sensors—is no longer in the experimental stage. For example, GreatCall’s Link smartphone app allows family caregivers to stay informed about the health and safety of family members who have the company’s devices.

And, artificial intelligence (AI), though less developed, promises to be a game changer for adult children. It is the technology behind robots, self-driving cars, medical technology and smartphone apps. AI will let care recipients age in place, stay socially engaged, anticipate their needs and keep connected to family caregivers and clinicians.

Voice First technology, as it is known--Apple’s Siri, Amazon’s Alexa, or Microsoft’s Cortana—is altering the caregiving landscape. Apps for Echo devices, for example, can send notifications, turn on lights, adjust thermostats and do other “smart home” tasks.

Companion robots such as ELLIQ can help with tasks and make suggestions (“time to go for a walk” or “do you want to play cards?”). Many others, unveiled at the Consumer Electronics Show, are slated to hit the market soon.

Stay tuned for more developments that will give caregivers more options and information--and maybe even a little more freedom.