Caregivers for Dementia Patients Don’t Have to Go It Alone
Since Sharron Warren was diagnosed with early-stage Alzheimer’s disease in 2013, her husband, Tom, has done all he can to help her stay healthy.
Don’t call Tom a caregiver, though. He prefers care partner.
“We’re on this journey together,” he says. “My health is as important as hers. From the start, we decided we weren’t just going to plop down in front of the TV and give up. We were going to stay active and keep going until we can’t go anymore.”
Tom, 57, and Sharron, 70, like to travel, go to the gym, cook healthy meals, do jigsaw puzzles, plan social outings and host grandchildren at their Williamsburg, Va., home. They’ve even planned a May trip to Italy. Not that they haven’t faced reality: Sharron can be forgetful and needs Tom at doctors’ appointments, and she rarely drives alone outside a familiar sphere close to home. She has traded books for magazine articles. And she has lined up legal, financial and medical documents to plan for an uncertain future.
The Warrens believe their approach has slowed the progression of Sharron’s disease and eased Tom’s mental strain. “We’re very honest,” Sharron says. “Tom has always told me his concerns, which is why I originally went to the doctor. This is a part of my life, but it doesn’t define me. I’m not hiding.”
Caring for a loved one with dementia is often an unexpected marathon, says Jo McCord, a family consultant with the Family Caregiver Alliance, a national nonprofit support organization. Success requires “training:” planning, expert coaching, support from loved ones and constant adjustments over time.
“You can’t do this alone,” McCord says. “You have to take your head out of the sand, get educated and take care of yourself.”
Here are five necessary steps for all care partners:
Get an accurate diagnosis and regular checkups.
“Dementia” is an umbrella term — similar to “cancer” — for 80-plus conditions, each with varied symptoms and treatments, says Denise Butler, coordinator of the Geriatric Assessment Clinic for the Riverside Center for Excellence in Aging and Lifelong Health, a nonprofit based in Williamsburg.
Alzheimer’s disease is just one form of dementia, generally diagnosed after doctors rule out other causes of cognitive decline. Another common dementia, Lewy body, affects the part of the brain devoted to vision, causing hallucinations. With vascular dementia, or brain damage from multiple strokes, patients may be able to slow progression with proper management of hypertension or diabetes. There are mixed dementias, too.
Treatable medical issues also can mimic or contribute to memory decline, including depression, stress, vitamin B12 deficiency, medication side effects, sleep apnea, kidney failure, urinary tract infections, dehydration and alcohol use. “You can’t know what you’re dealing with unless you pursue a specific diagnosis,” Butler says.
Take care of legalities.
Early on, consult an elder law specialist on necessary documents to protect a person who may become mentally incapacitated. The Alzheimer’s Association, an area Agency on Aging, the National Academy of Elder Law Attorneys or the government’s Eldercare Locator program (eldercare.acl.gov or 1-800-677-1116) can identify local experts.
Top priorities are durable powers of attorney for healthcare and finances — each with a backup agent should a first choice be unable to serve — advanced medical directives and living wills or trusts. Caregivers also should compile folders of medical records and assets such as bank account numbers and house and car titles.
If a person with dementia has always handled certain tasks like paying bills or filing taxes, the caregiver should learn how to take over when necessary.
Ideally, those processes should begin while a patient can still offer input, says Douglas Panto, community programs manager for the Alzheimer’s Association of Southeastern Virginia. “A lot of times it’s denial that hinders the best-intentioned caregivers,” Panto says. “We get so many calls from people in panic mode. Just call it what it is, dementia, and think about the future.”
Plan meaningful days.
Dementia patients don’t stop being unique individuals after a diagnosis. Not everyone wants to play Bingo — maybe they’d rather take a community art class, listen to old music or walk a shelter dog.
“Everyone needs to feel successful, like they can still make a contribution,” Panto says. “There will be good and bad days, but there will be many more good days if they can keep finding pleasures in life.”
Regular daytime and sleep routines can ease feelings of fear, frustration and anger, as can writing down schedules and important facts on a dry erase board. Many dementia patients also benefit from regular social engagements, meditation exercises and an overall quiet home environment.
Be realistic.
Caregivers’ expectations must evolve based on health changes in their loved ones. “If you’re asking for something they can no longer do, they’re going to get upset,” McCord says. “That lashing-out behavior is not personal; it’s a communication tool.”
For safety purposes, caregivers should order identification and tracking wristbands from the Project Lifesaver or MedicAlert programs — and also wear one themselves. “That way if they’re injured in a car crash, say, doctors will know there’s a dementia patient to check on,” Panto says. For concerns about driving ability, a family’s physician can help arrange new licensure tests.
Finally, each caregiver should be honest about a personal “breaking point” — when to turn to a pre-researched in-home provider, assisted-living center or skilled nursing home. “It could be a loved one leaving a stove on, refusing to keep clothes on, or leaving the house alone,” Butler says. “It’s OK to say, ‘I can’t do this anymore.’” Outside help can be best for everyone, McCord adds: “Mom might not be cooperative with her child trying to bathe or dress her, while she would be with a professional.”
Take care of yourself.
Plenty of caregivers have died before a person with dementia, partly due to physical and mental strain. “It’s like on airplanes: put on your oxygen mask first,” Butler says. Healthy diet, exercise, stress management and proper sleep can have a major impact, as can attending local support, educational and grief counseling groups and getting help from relatives, friends and day- or respite-care programs.
“It’s easy to get dangerously isolated,” McCord says. “For example, many people immediately quit their jobs, when they might truly benefit from having that outlet, regardless of financial or insurance factors. By safeguarding your own health, you may be able to keep a loved one at home longer.”
That’s Tom Warren’s hope. “I’m not ever afraid to ask for help or admit there’s a problem,” he says. “It’s got to be OK for all of us to talk openly about cognitive issues. That’s what Sharron needs.”
They’re partners, after all.
IS IT NORMAL AGING OR DEMENTIA?
All human brains lose power with age; most begin to shrink around age 30, while “data” continues to pile up. Memory lapses are inevitable, but early signs of dementia involve more troubling failures and/or personality changes. For example: it’s normal to forget the name of an acquaintance, but not a family member. Temporarily losing a car in a parking lot is typical, but forgetting how you got to a store in the first place is not.
The Alzheimer’s Association lists 10 warning signs at https://m.alz.org/10-warning-signs.asp. Here’s what to look for, along with typical age-related changes:
Warning: Memory loss that disrupts daily life.
Typical: Sometimes forgetting names or appointments, but remembering them later.
Warning: Challenges in planning or solving problems.
Typical: Making occasional errors when balancing a checkbook.
Warning: Difficulty completing familiar tasks at home, at work or at leisure.
Typical: Occasionally needing help to use the settings on a microwave or to record a television show.
Warning: Confusion about time or place.
Typical: Getting confused about the day of the week but figuring it out later.
Warning: Trouble understanding visual images and spatial relationships.
Typical: Vision changes related to cataracts.
Warning: New problems with words in speaking or writing.
Typical: Sometimes having trouble finding the right word.
Warning: Misplacing things and losing the ability to retrace steps.
Typical: Misplacing things from time to time and retracing steps to find them.
Warning: Decreased or poor judgement.
Typical:Making a bad decision once in a while.
Warning: Withdrawal from work or social activities.
Typical: Sometimes feeling weary of work, family and social obligations.
Warning: Changes in mood and personality.
Typical: Developing very specific ways of doing things and becoming irritable when a routine is disrupted.
If you notice any of the 10 warning signs of Alzheimer’s in yourself or someone you know, don’t ignore them. Schedule an appointment with your doctor. The organization also offers a 24-hour helpline — (800) 272-3900 — to answer questions about all dementias and refer families to local resources.