Planning Ahead May Ease Some of the Burden

When Alzheimer’s disease strikes a parent with children still at home, plans must be made for the entire family.

Social workers and Alzheimer’s experts say families must set priorities, focusing first on establishing good medical care, then on informing the children, finding support for everyone affected, and thinking ahead to college and financial decisions.

* Find a primary care doctor and neurologist who can work with you. They should establish whether you’re a good candidate for one of the three medications that can help Alzheimer’s patients: Aricept, Exelon and Reminyl.

* Talk with your children about the diagnosis. As with a financial crisis--such as unemployment--children need to know that life has highs and lows, says David Troxel, chief executive of the California Central Coast Alzheimer’s Assn. in Santa Barbara. “Some of our families have gotten closer when a family member has Alzheimer’s.”

* Share your feelings with friends, family and clergy and continue participating in social activities.

* Seek counseling where you can. Even therapists who haven’t worked with dementia patients can help with basic issues of isolation, loss, anger and fear in patients and their families, says Deborah Dunn, director of patient and family services for the California Central Coast Alzheimer’s Assn.

* Look for support groups tailored to patients who develop the disease before 65 or to patients in the early stages of the illness. Such groups can teach you what to expect as the disease progresses, and offer practical advice on planning for the future and communicating.

* Set up reminders, systems and calendars to keep track of work and daily appointments.

* Record important milestones and special family events, as well as the affected parent’s recollections, feelings and wisdom. Use a journal or scrapbook, have a family member videotape or hire a professional videotaping service.

* Move up special occasions to take advantage of the Alzheimer’s patient’s current abilities. Parents can take short trips with the kids, and families can take major trips together.

* Begin thinking about how the illness will affect the children’s ability to attend college. Some families may want to consider community colleges or having children attend school closer to the sick parent. Ask about scholarships and grants.

* Research early retirement as well as health and retirement benefits.

* Consult with an attorney or financial consultant. Elder law attorneys can help with estate planning, IRA and 401(k) issues. Look into government assistance programs. Organize financial records. Draw up plans--known as advance medical directives--on care, resuscitation, treatment, and share them with your doctor. The healthy spouse may want to buy long-term care insurance for himself or herself, says Laura Rice-Oeschger, a project manager with the Alzheimer’s Assn. of Los Angeles’ regional office in Northridge.

* Locate in-home help for when your spouse is away and you need help.

* Look for adult day-care programs and residential care facilities that specialize in early-onset patients.