8 Sep 2019
It’s the diagnosis you and your family have been dreading. You have Alzheimer’s disease. So many emotions are swirling through your head that it can be hard to think, to put one foot in front of the other, much less to come up with a plan of action. So what should you do first? And then what?
Give yourself time to process the diagnosis.
Expect to feel a lot of different emotions. “It’s hard and scary at first for people to acknowledge when they get a diagnosis of Alzheimer’s,” says Joan Nimmo, LCSW, a care consultant at the Alzheimer’s Association Hudson Valley in Purchase, NY. “People can’t believe it. They think, these were supposed to be the golden years, we were just ready to retire and go travel, or we had gotten the perfect little cabin in the woods, and now none of that will work.”
While you are processing news of the diagnosis, don’t feel you have to start making decisions on day one. You need time to let the news settle in. But once the initial feelings of denial and anger subside, it’s important to start planning.
“Good support and early planning can help both the patient and the caregivers to get over the initial shock,” says Allyson Mann, LMSW, associate director and geriatric care manager at Geriatric Care Consultants, LLC in Larchmont. “You need to make important decisions early and to find out as much as possible about the disease and what to expect.”
Talk to your doctor.
Ask your doctor for details about your diagnosis, recommends Pasquale Fonzetti, MD, of Burke Rehabilitation Hospital’s Memory Evaluation and Treatment Services (METS). Find out what kind of dementia you have, he advises. “You need to know whether it is straightforward Alzheimer’s or vascular dementia or Lewy body dementia since the symptoms and prognosis will be different. Ask how severe it is, at what stage your illness is, and treatment options.”
If your illness is mild or early stage, ask about clinical research trials, Dr. Fonzetti says. Some trials involve taking a medication or may use new technology. “There are many types of trials, so you want to get more details,” he explains.
Consider joining a support group for yourself and for close family and caregivers. The Alzheimer’s Association offers a variety of services for diagnosed people and their families: from monthly socials to memory care workshops.
It really varies from person to person on whether to join a group or not. But if you have just been diagnosed and you want support, be sure to look for an early-stage support group.
Address finances and legal matters.
There are certain legal forms that should be in place, says elder law attorney Paolo Conte. “These include a Living Will and, obviously, a will,” he says. “You will want to have in place advance directives that allow the person you select to be your agent make financial decisions for you.”
So can you sign a will if you have Alzheimer’s? “The only provision or requirement is that the person is lucid and at a point of clarity when they sign the will,” says Conte.
Identify where your various legal and financial documents are and try to consolidate them, advises Paul Tramontozzi, a certified financial planner and wealth advisor at Lob Planning Group in Purchase, NY. “Try to keep documents in as few places as possible,” he says. “Things can fall through the cracks otherwise.”
Get organized and make sure you have a good team around you. “You will want a financial planner, a trusted accountant, and an estate attorney to make sure all your legal documents are up to date,” counsels Tramontozzi. “Make sure someone in the family has your power of attorney, since that will save a lot of headaches down the road. You also may want to enlist the help of a geriatric care manager who can help deal with managed care. A geriatric care manager can also help navigate the Medicaid application in case you need to start that process.”
You should be following the Mediterranean diet, says Dr. Fonzetti. “In simple terms, this is a diet that is composed of fresh vegetables and fruit, legumes, and fatty fish,” he says. “The food should be fresh, local and seasonal. So be picky. Buy locally. Read the labels with the help of your caregiver.”
Engage in physical activity.
Dr. Fonzetti recommends walking – and for at least half an hour a day if possible. “You can walk in the park or in a mall if it is raining,” he says. “You want to walk in a place that is safe and comfortable.”
He also cautions his patients about avoiding falls and making sure their home is safe. An occupational therapist can inspect your home and recommend modifications or equipment to prevent falls.
Resolve to stay engaged!
“Creative expression provides rich opportunities to engage for those with memory impairment. Celebrating life through the universal language of dance, music, storytelling and art making is the best medicine. It is in awakening creativity where connection and validation are found, honored and preserved,” says Maria Scaros, Executive Director, The Greens at Greenwich.
A person with Alzheimer’s shouldn’t just “stop their life,” says Mann. “They should maintain their life as much as possible so they can have a sense of control wherever they can.” She also advises people to express themselves. Otherwise, they are more likely to succumb to depression. “Instead, put important things in place, like legal matters. Then go ahead and take that long-wished-for vacation!”