Keeping it real.

The public policy coordinator for the South Carolina chapters of the Alzheimer's Association, William Painter is a long term care consultant. He spent 12 years working in long term care, mostly as an activity director in nursing homes.

Even people with dementia need purposeful activities

I RECENTLY READ SOME RESEARCH PAPERS ON HOW TO MEASURE and improve the quality of life for nursing home residents. Most of the researchers had done the sensible thing and asked nursing home residents-and their families, in some cases-what they thought were the most important factors in being able to live a good life in such a setting. One of most frequently cited factors was having a sense of purpose.

Stands to reason, doesn't it? We all want to feel needed, to be engaged in purposeful work. That desire doesn't disappear because we have to live in a nursing home, even for those with Alzheimer's and related disabilities. But how can a person find a sense of purpose outside the familiar realms of work, family, community, and home?

Many of the papers exhibited a heartfelt appreciation of this dilemma. But their solutions reflected a frame of mind that all too often stifles efforts to improve the quality of life in nursing homes. Even in the best of these was the suggestion that staff should, as one author put it, "design activities that are perceived as purposeful."

Design activities that are perceived as purposeful. Those seemingly innocent words reflect a therapeutic bias that undermines the human-to-human bond shared by the staff of a nursing home and the people who live there.

Why not simply do things with residents that have a purpose? No 'perceived" to it-and maybe not much "design." Just find something that needs doing, from painting to planting to pushing wheelchairs. Ask the residents, "Who wants to help?' Then go to work.

In my previous life as an activity director, I saw despair at the taste of canned vegetables lead to an explosive enthusiasm for gardening at one nursing home. Problem: yucky food. Solution: Grow your own! I also saw a small group of residents whose cognitive abilities had been spared organize a regular recreation program for their anxious, restless comrades with Mzheimer's. By performing this compassionate act, they enormously enhanced the quality of life of their bored roommates and neighbors. What's more, they helped the time-crunched staff.

I'm not suggesting that you put elders to work washing dishes or scrubbing floors. Residents should be involved in activities they enjoy. And of course the tasks must not he so strenuous that they pose a medical threat. In gardening, for example, most of the heavy pick-and-shovel work should be left to the administrator or activity director. (Those people love that kind of stuff!)

And I'm not saying residents, particularly those with dementia, should never be involved in any activity that has elements of pretense or simulation. But I will say those instances should be rare, because you will usually find that there are plenty of real things you could do instead.

Even people with cognitive impairment respond better to genuinely purposeful activities than to busywork. No matter how good an actor you may be, if you propose some project with the intent of making a resident feel useful, there will inevitably be leaks in your facade. As a result, cognitively intact residents will feel disgusted and disillusioned-pretty much the way you might feel about a politician who's trying to manipulate the public-and residents with impaired cognitive abilities will experience a vague unease.

There is no hatred or animosity involved in this deception, yet its effects are deeply destructive. Trying to sell a more palatable version of reality in place of the real challenges, purpose, and joy of life eviscerates the bond that exists between people in a world that is fully shared.

Communicating with people with dementia might better be taught in terms of learning a language than play-acting. Staff need to understand that their lives are intertwined with those of the residents they work with. A resident's impairments are just curves in the road-sharp curves sometimes, sure enough, but secondary to his or her fundamental humanity.

Of course we all hold back sometimes, take a more "objective" approach, or otherwise give ourselves more emotional elbow room when we work with people in a long term care setting. We need a little distance to protect ourselves from the imminent loss of these, our brothers and sisters and friends, and to dim our awareness of our own vulnerability to similar challenges in our "golden years" -not to mention our own mortality. Some professional distancing is necessary and natural. But it should not be the philosophical foundation of the relationship between staff and residents.

That relationship should be rooted in the awareness that we're all in this together, and in the simple genius of that time-tested rule: Do unto others as you would have them do unto you.