A dementia diagnosis can be devastating -- not only for the person with the disease, 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 another type of dementia, here are six steps to help you deal with the disease now and in the future.
After Your Diagnosis
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? Think about making plans for it now.
Stay engaged. It’s common to feel sad, and even have 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. Social support can help him fight depression and stay active, which is good for his health overall. Don’t go it alone – ask other family members to join in.
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 gets worse, 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.”
Caregivers: Care for yourself first. When you're looking after a loved one with dementia, it’s easy to feel so busy or overwhelmed that you skimp on sleep and exercise. It’s important to eat well and avoid isolating yourself, says Brian Carpenter, PhD, a professor at Washington University in St. Louis and psychologist who specializes in family relations in later life. That may explain why research shows people suffer more health problems after they become caregivers.
Feelings of guilt and obligation are normal -- My mom doesn’t recognize anyone but me; What if something bad happens to Dad because I’m not there? “Ask family members and spouses for help, use community programs like social day care, or have a neighbor step in,” Carpenter says. “Instead of feeling bad about going for a walk, for example, remember that you’ll be better able to care for your family member if you’re not sick or worn out.”
Resources for caregivers and people with dementia in rural areas can be limited, and government support varies state to state. A few places to try:
- Community hospitals
- Colleges or universities
- The state welfare department
- Community senior centers
Don’t lose sight of the good times. Pull out a photo album or play some favorite music. Reminiscing can help people with dementia and their caregivers bond and lighten their mental load, Leipzig says. “Even in the latter stages of dementia, you may be surprised by how much your loved one remembers."
Keep in mind that as with any illness, there will be ups and downs, Carpenter says. “When you have a bad day, there will be a good one around the corner. People often equate ‘dementia’ with ‘bed-bound’ -- but there’s a lot of living to be done after the diagnosis.”