A dementia diagnosis can be devastating -- not only for the patient, but for those who love him, too. “There’s a grieving that occurs. You haven’t lost your loved one, but the person you know is going to change,” says Rosanne M. Leipzig, MD, professor of geriatric medicine at Mount Sinai School of Medicine in New York.
If you or someone close to you has Alzheimer’s or other dementia, here are six steps to help you cope now and in the future.
Do what you can while you can. “I tell newly diagnosed patients, ‘Let’s talk about what you can do while you have your faculties, so you can decide how the next years will unfold,’” Leipzig says. “Making those decisions, either alone or with family members’ help, can be empowering.” Go ahead and make advance directive documents (which spell out your medical wishes), living wills, and long-term care plans early, Leipzig says.
That trip you always wanted to take? Consider it now.
Stay engaged. It’s common to feel sad, and even develop depression, after a dementia diagnosis, says Ninith Kartha, an assistant professor at Loyola University Chicago Stritch School of Medicine. But resist the urge to hole up. Instead, “spend time with family members and friends, attend religious services, or even go shopping,” Kartha says.
If you’re feeling hopeless, see a doctor; he may prescribe antidepressants, talk therapy, or both.
If you’re a caregiver, encourage your loved one to do these things with you. “Good social support can fight depression and help you stay active, which improves your overall health.” Don’t go it alone – ask your loved ones to do things with you.
Get educated. The more information and help you have, the easier it will be to keep yourself healthy and safe. “Patients, and if appropriate, their families, should be in close contact with their physicians, as well as social workers, therapists, and other professionals the doctor recommends,” Leipzig says.
Also, take advantage of free community services, like support groups at your local Alzheimer’s Association chapter, university legal clinics, and hospital advocacy services.
For Loved Ones
Take a gentle approach. As dementia progresses, outbursts and other personality changes can become more common. If you’re a caregiver, remember that your loved one’s upsetting behavior isn’t personal -- or on purpose. This person is ill, says Zaldy S. Tan, MD, medical director of the UCLA Alzheimer's and Dementia Care Program. Being loud or forceful doesn’t help someone with dementia think more clearly, Tan says. So when you feel your patience running thin, ask someone to step in for you while you take a breather.
And “don’t talk around your loved one like they’re not there,” Leipzig says. “Even in the late stages, a person with dementia usually knows someone is talking about them, and it can trigger irritation and even paranoia.”