An interviewer recently asked me what three pieces of advice I had for dementia caregivers. My answer: “1) Get respite help. 2) Get respite help. 3) Get respite help.”
It’s no secret that no one can do dementia care – or really, almost any kind of eldercare – all alone, all day, every day. Enter respite care, or relief help that comes in various forms, ranging from a relative who regularly stops by to give you a break to hired services in the home or out of the home.
Good news on the latter front: Adult day services centers have grown by 33 percent since 2002 nationwide, according to a new MetLife Mature Market Institute study.
But is it enough?
The theory: How adult day services help
• You get a break! Don't underestimate the value of this. Getting help preserves your own health (mental and physical) and ultimately enables you to be a better caregiver, longer.
• The person you’re caring for gets a break from you. It works both ways. Most people just plain get tired of one another. Net result: Improved mood.
• The center user also gets stimulation. A big 90 percent of centers offer cognitive stimulation. Half provide occupational, physical, or speech therapy.
• Did I mention you get a break?
The problem: Common glitches
• Not enough services. Even though there are now 4,600 centers serving 260,000 people, in many areas, places just don’t exist or are too far away to utilize.
• Not enough spaces. Almost a third of centers have waiting lists, says the MetLife study.
• Costs outweigh reimbursement. Fees average $61.71 per day, most of which gets picked up by Medicaid, the Veterans Administration, state/local social services, or private payer insurance. But the average daily cost to provide the care is $68.89. Grants and donations must supplement the difference.
• Caregivers misunderstand the centers. It’s not “parking.” It’s not the same as “putting Mom in a nursing home.” It’s not “baby day care.” Too often, these respite-care misperceptions prevent caregivers from even looking for relief help. Or they wait too long to use these valuable services, and neither party gets full benefit.
• Sometimes people just won’t go. Resistance is a tougher issue to grapple with, although it can be overcome. Or sometimes participants are too aggressive or combative, and/or the place is not a good fit. So the caregiver is back to the stressed-out drawing board.
The reality?: You tell me!
I’m a huge fan of respite services. An in-home elder companion made it possible for my late dad, who had late-moderate stage dementia, to remain at home, while giving his primary caregivers a needed break during the day.
But I know it doesn't always work smoothly. What's been your experience with respite services or adult day care in particular? Have you been able to find adult day services near you? Has paying for them been simple or affordable? Do adult day services really work?
It helps to hear the good, the bad, and the ugly. What's your story? What's your wish list?