Marianne Watson, RN, has tremendous empathy for individuals who watch their spouses with Alzheimer's disease fade away day by day.

"It's very difficult to lose someone you expected to spend your retirement with," said Watson, manager for the Memory Disorders Clinic of the Alzheimer's Disease Research Center at the University of Pennsylvania Medical Center in Philadelphia. "Many husbands or wives feel guilty if they don't provide all of the partner's care themselves."

Changing Perceptions

Watson often sees spouses running themselves into the ground to avoid day care, home care or assisted living placement for loved ones, while trying to keep them safe and prevent them from wandering.

"They'll tell me, 'I would never want to go to those places,'" Watson related. "It's important to help them understand the patient may not even realize he's at the day care center."

Watson acknowledged it can be difficult for spouses to alter perceptions of what's best for the spouse with dementia.

"When individuals with Alzheimer's were healthy and cognitively intact, their perspective was one way," she pointed out. "Now that they've declined, that perspective may have changed and they can (and do) have an enjoyable time at these day care programs with wonderful, caring staff and social interactions."

Watson recommends spouses give programs such as adult day care a 2-3 week trial before making a final decision. She warns families day care may not work out at some point in the disease process, but that both patient and caregiver may feel differently 6 months later.

Paula Damgaard, RN, CCRC, coordinator of the Memory Clinic and Alzheimer's disease research at the University of Virginia Health System in Charlottesville, provides similar counseling to spouses.

"Often a wife will tell me, 'I took him to an adult day care program and he didn't like it,'" she explained. "I'll respond, 'You took your 5-year-old to kindergarten and he didn't like it at first, but then grew to love it. You need to go through that same process with your husband.'

"However, you have to make sure that you don't treat your spouse like a kindergartner," Damgaard cautioned. "You have to treat them like they're an adult. When my mother was diagnosed with Alzheimer's disease, I had to continue treating her like my mother even though she was acting like child."

With years of personal and professional experience working with individuals with dementia, Damgaard is pragmatic in her approach. "Number one, you have to keep the person safe, and number two, you have to keep them happy," she said. "It is not disrespectful to use little white lies to keep them safe and happy."

Focus on Happiness

Damgaard urges spouses to avoid anger and frustration over memory issues and suggests strategies to limit pointless arguments.

"People with Alzheimer's do know what's going on in their lives in the early stages; as time goes on they know less and less," she said. "What difference does it make if the person knows whether today is March 22 or not? No one wants to believe they're stupid or that they're losing their memory; that constant reminder of their memory loss is very aggravating."

Damgaard urges spouses to examine their interactions with the individual who has dementia. "Many times, individuals with Alzheimer's develop negative behaviors because people set them up with constant reminders and arguing about facts," she said. "They'll be much happier and have a better quality of life if you don't argue with them."

Go With the Flow

Watson also recommends families go with the flow and view a videotape called "Complaints of a Dutiful Daughter."

"The story depicts a woman with dementia who thought she was at her sorority house every time she visited her daughter, who would then try to re-orient her mother. Finally, it dawned on her 'If she thinks my home is her sorority, so what?'" Watson said. "She learned to go along with that idea instead of struggling against the impossible, and their relationship became much better as she accepted the reality of her mother's decline."

Damgaard mentioned a Dear Abby column about letters repeatedly informing a woman with AD her husband was dead. "Do you tell someone with Alzheimer's that a loved one is dead more than one time? No! Why keep reminding them so that they're in constant grief about an event?" she wondered.

Watson agreed with Damgaard, adding: "My recommendation is just to support the person with Alzheimer's, because in their world the spouse is still alive. You might try once, but don't try to set the individual straight over and over. You can talk about the dead spouse in a positive manner when his name comes up; share memories and look at photographs in a way that's comforting to the person with dementia."

Creativity for Safety

Damgaard advocates addressing safety concerns in non-confrontational ways. "Many men like the feel of keys in their pockets, even though they can no longer drive safely," she pointed out. "So give them a set of keys ? who says it has to be car keys?"

However, she encourages families to shed automobiles the patient can no longer drive safely, but acknowledges some families aren't ready to take that step. "They're holding on to the unrealistic belief that the individual will get better and be able to drive," she explained. "In that case, I might advise them to take the car to a shop with the request that they really never repair it. It's understandable to someone with Alzheimer's disease when you say, 'The shop is still waiting for a part' whenever they inquire about the car."

Damgaard even encourages family members to get on the phone and call the "shop" about the car. "Identify a family member who can play along with those calls if you think the person with Alzheimer's is going to listen in on the extension," she recommended.

Take Time for Yourself

Damgaard started working at the University of Virginia in clinical trials regarding Alzheimer's disease in 1987, long before her mother's diagnosis in 1996.

"Prior to that, I thought I knew quite a bit about Alzheimer's disease and Alzheimer's care, but her diagnosis was a real eye-opener for me," she remarked. "It gave me a lot of empathy for what family members go through."

She recommended giving spouses permission to pursue their own hobbies and interests, and a break from constant caregiving, as well.

"No one is meant to be together 24 hours a day, 7 days a week, and now it's even more important to have that hobby or to pursue those outings because you're being sucked dry by the constant care and vigilance," she said. "And the person with Alzheimer's disease needs time away from you as well, I remind them."

Bringing Alzheimer's Into the Open

Most of all, Damgaard wants Alzheimer's disease discussd openly.

"I liken people's reluctance to talk about Alzheimer's disease to the late 70s, when we never talked about cancer, or the Big C," she noted. "Until we blow it out of the water and make people realize it's there, we won't be able to deal with Alzheimer's disease as a society."

Sandy Keefe is a regular contributor to ADVANCE.