Don't hesitate to get help with a dementia patient

Marilyn Blum is like a lot of wives with a retired husband around the house. She loves the man she has been married to for 33 years but says, "It's just not normal to be together 24/7."

Blum's comment is more poignant when she explains that her husband, Steve, 65, has had Alzheimer's disease for five years and needs help dressing, grooming, eating and using the toilet.

"I wish I had gotten paid help right away. I waited two years," says Blum, 61, of Owings Mills, Md.

Now Steve participates in an adult day care program. A paid companion, Evadne Cummins, visits the house three times a week to keep Steve company, make lunch, go on walks and help with basic grooming.

Like the Blums, about 70 percent of families coping with Alzheimer's and other dementia have loved ones who live at home, the Alzheimer's Association says.

Most of those families do not have any assistance from paid health workers; family members and friends do all the care.

This week, a study will be reported from the annual Alzheimer's Association International Conference on Alzheimer's Disease meeting in Honolulu on the influence of diagnosis and care management on health care costs.

Experts say having no outside help can take a toll on caregivers and patients alike.

Cost, finding care you trust and not knowing resources are roadblocks to getting paid help, says nurse practitioner Brigid Reynolds, clinical coordinator at the Memory Disorders Program at Georgetown University Medical Center in Washington, D.C.

The options range from a few hours of companionship a week early on to part-time local senior center Alzheimer's day care to full-time nursing home or in-home assistance in the final days, she says.

The earlier you create a care plan, the better, Reynolds says.

But she and other Alzheimer's experts say many families don't plan enough: "The inaction is sort of an inability to grasp onto and realize this is a terminal disease."

Guilt can get in the way, too, says Gary Kennedy of the Division of Geriatric Psychiatry at Montefiore Medical Center in the Bronx.

"Guilt is automatic for family caregivers. Families feel connected and responsible," says Kennedy, who suggests families start paid care in small increments, maybe a few hours a week.

Sometimes patients will fight an outside caregiver, though.