The doctor said your loved one’s memory problems are due to progressive dementia—most likely Alzheimer’s disease. Your role as a caregiver is about to become very important. Preparing for that role may seem daunting.

A support group, including your physician, can be a big help in dealing with stress related to caregiving. (File photo)

Alzheimer’s disease is the most common form of dementia among older adults. Dementia is a brain disorder that seriously affects a person’s ability to carry out daily activities. At first, parts of the brain that control thought, memory, and language are affected. Eventually, as symptoms get worse, people with dementia may need total care.

There is so much to think about. Health issues. Financial matters. Legal concerns. What should you deal with first?

“There’s no single way to prioritize because everyone’s needs are different,” says Beth A. Kallmyer, MSW, senior director of constituent services for the Alzheimer’s Association. “But when a family member or loved one has been diagnosed with Alzheimer’s disease, you first have to give yourself time to deal with the emotional reaction to the news. If you don’t, it can interfere with your planning later on.”

Support for the stress

To help deal with your emotions, talk about it. “Talk with people you trust—your family, circle of friends, counselors, clergy,” Kallmyer says. “The Alzheimer’s Association has master’s-level clinicians and social workers available 24 hours a day, 7 days a week, who can talk to people who have been diagnosed or their caregivers.” Call the Alzheimer’s Association’s 24/7 Helpline at 1-800-272-3900 or visit the website at http://www.alz.org/index.asp.

Your doctor can help too. “I teach patients and their caregivers as much as possible about the disease so they’ll know what to expect,” says Roland Lascari, M.D., medical director at Cedar Crest, the Erickson Living community in Pompton Plains, New Jersey. “But people can learn even more about how to be a caregiver by joining an Alzheimer’s support group.”

Kallmyer also stresses the importance of having a support group. “You’ll have many questions and concerns about what is going to happen over the course of the disease,” she explains, “and it’s enormously helpful to talk to others who have gone or are going through the same situations.”

If you live in an area without a support group, the Alzheimer’s Association offers an online support community with message boards and specific forums for people affected by the disease.

“Getting support from others can help you and your loved one learn how to live as fulfilling a life as possible,” Kallmyer says.

Other resources for caregivers

“Most progressive dementias like Alzheimer’s disease have a fairly predictable course, but you don’t know how fast it might progress,” Lascari says. “Get advance directives like living wills and powers of attorney [both medical and financial] in place as soon as possible.”

“It might take a couple of months to meet with everyone who can help, like an eldercare attorney, a financial advisor, or doctors,” Kallmyer says. “You don’t want to have to be dealing with these issues on an emergency basis.”

Talk to your doctor about how to best care for your loved one’s health needs. “You may be able to care for someone with Alzheimer’s at home for a while, but eventually you may need to look into alternatives like assisted living or long-term care,” Lascari says.

The Alzheimer’s Association’s CareFinder is an interactive online tool that can give you recommended options and a list of questions to ask when screening a care provider. It helps you evaluate the level of care needed and can help you plan ahead and coordinate care. Additional resources for support are also provided.

If you just can’t wrap your head around everything you need to do, “The Alzheimer’s Association offers care consultation at all of our chapters across the country,” Kallmyer says. “They can do an assessment and help you prioritize the things you need to be thinking about.”

The Alzheimer’s Association

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support, and research.
www.alz.org
24/7 Helpline 1-800-272-3900

Alzheimer’s Disease Education and Referral (ADEAR) Center

A service of the National Institute on Aging, the ADEAR Center offers information and publications for families, caregivers, and professionals on diagnosis, treatment, patient care, caregiver needs, long-term care, education and training, and research related to Alzheimer’s disease.
www.nia.nih.gov/Alzheimers
1-800-438-4380

Eldercare Locator

Eldercare Locator is a nationwide directory-assistance service helping older people and their caregivers find local support and resources.
www.eldercare.gov
1-800-677-1116

National Family Caregivers Association

The National Family Caregivers Association helps educate and support people who care for loved ones with chronic illness, disability, or the frailties of old age. The association offers an online library of information and educational materials, workshops, and other resources.
www.thefamilycaregiver.org
1-800-896-3650