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They're not just stubborn: How to get people with dementia to participate

It's not their fault. It might be yours.

Anyone who has spent time with family members with dementia knows that getting them to follow through on an idea can be a challenge. Your mother promises to make a phone call or write a note on a card, but it never happens.  You ask her to wash some dishes and she just sits in her chair. Maybe your father loved jigsaw puzzles but, now, you give him a new one and he never touches it. Maybe they just don't seem to want to do anything.

Rachel Wiley, an occupational therapist who works in clients' homes, said caregivers are often frustrated because their family members no longer want to do things they've enjoyed their whole lives. "Every time I ask if she wants to do anything, she says, 'No,' " clients will tell her. People with dementia can seem stubborn or lazy.

Wiley, who owns Day By Day home therapy in Devon, spoke recently at a conference on caregiving sponsored by the Alzheimer's Association. She offered lots of practical tips on how to get people with dementia to participate in activities. This is important not only because it can give caregivers a break, but because it can decrease aggression, fear, and such annoying behaviors as wandering, rummaging, and repeating questions. It can also improve quality of life by helping people with dementia get some mental stimulation and feel productive.

"We have an innate need to want to be productive," Wiley said. "We want to be engaged. That does not go away just because someone has dementia."

What does often go away, though, is the ability to initiate activity. This happens because of damage to the brain. People with various kinds of dementia, including Alzheimer's disease, simply can't go from idea to action the way they did when they were younger. Brain damage may also affect their ability to understand directions and make choices. They think more slowly, so they can easily feel rushed. "People with dementia can take up to 60 seconds to process what you say," Wiley said.

Caregivers can't do anything to change those deficits, but changing how they approach an elder with dementia can make a big difference. If someone with dementia is balky about, say, taking a shower, think about what the problem might be. Is the water too cold or the room too dark? Is the person in pain?  Activities meant to entertain can be modified so that they're easier.

First off, don't pepper elders with questions or complicated choices. Instead of saying, "Do you have to use the bathroom?" say, "We are going to the bathroom." If the word shower upsets them, don't use it. "Come with me," you say, and you end up at the shower. If someone with dementia is frightened, acknowledge it and say, "You are safe with me. I'll protect you." After they're calmer, you can try to get them to do something.

The one question that people with dementia often respond to is this: "I really need your help. Can you help me with this?"

Many people with dementia can still help out around the house, but you may need to make it easier. Washing and drying the dishes may be too much. You do one and have your mother do the other.

Give instructions with no more than one or two tasks at a time. Set out only the items that are needed for a job. If you want your father to make sandwiches, set aside a compact area that includes only bread and sandwich fillings. For tooth-brushing, put only a brush and toothpaste on the bathroom counter. If you want a relative to fold laundry and put it away, it may help to put simple pictures of socks or T-shirts on dresser drawers. If you want  someone with dementia to stand up, it may help for you to stand up yourself. If you want them to eat, gently tap the hand holding the spoon or fork.

Your father may have loved 1,000-piece jigsaw puzzles 10 years ago, but those are overwhelming now. Pick puzzles with bigger pieces and pictures with lots of contrasting colors.

If your mother likes to play solitaire, get her bigger cards and help her a little. You get the cards out of the cabinet, shuffle them, and hand them to her. It may be all she can do to match them. Your goal is not for her to play solitaire correctly or to finish a game.

Here are some activities Wiley said people with dementia may enjoy: sorting silverware, dusting, looking through photographs, coloring, walking, petting a dog or cat,  listening to music with headphones, yard work, sorting coins or nuts and bolts, washing windows, and gardening.

For a related story on how to talk to people with Alzheimer's disease, click here.