Don’t Just Blame Dementia

By Michael Friedman, L.M.S.W., Adjunct Associate Professor, Columbia University’s schools of social work and public health (reprinted from Huffington Post, 4/3/11)

After a person has been diagnosed with Alzheimer’s disease or other dementia, subsequent emotional, mental, cognitive, and behavioral problems are usually blamed on the disease. Other possible reasons including behavioral disorders such as depression, anxiety, or substance abuse or ordinary human reactions to tough realities are very often ignored.

“Grandma seems terribly sad.”
“Of course, she has Alzheimer’s”
“Grandpa has been nasty lately.”
“It’s the Alzheimer’s.
“Uncle John doesn’t enjoy life anymore.”
“Who would? He has dementia.”
“Mom isn’t eating much or isn’t taking her pills or isn’t getting any exercise.”
“It must be the Alzheimer’s.”

Not necessarily. In fact, blaming dementia very often gets in the way of understanding what is really going on and doing something about it that will help.

If there were a pill that would reverse, stop, or — better yet — cure Alzheimer’s, it might be useful to understand the emotional and behavioral problems of people with dementia solely in terms of the disease. But the best pills available now only delay the unavoidable decline in memory and other cognitive functions. That’s worth doing, of course, for the people for whom the pills work. But counting on the doctor to come up with medicine that will make a big difference usually is disappointing.

People with dementia experience many of the same emotions as people without dementia, but they are at higher risk than older adults without dementia for diagnosable mood and anxiety disorders, both of which can result in declines in cognitive functioning that are similar to the decline associated with dementia.

Unlike dementia, however, depression and anxiety can be treated effectively; and if they are, the loss of cognitive functioning that is caused by these disorders can be reversed. To be clear, treating depression and/or anxiety does not reverse dementia and the loss of cognitive functioning caused by dementia. But effective treatment for mood or anxiety disorders can result in overall improvement of functioning that can make a very big difference in a person’s life.

These days, of course, the first line of response to depression and anxiety is medication. However wise that is for people without dementia, it is unwise for those with dementia. Medication can be helpful, but it can also be dangerous. At the very least, doses must usually be lower than for younger adults.

Better is to begin with interventions that do not rely on medications. Some formal psychotherapies can be helpful, such as “cognitive-behavior” and “interpersonal” therapy. Exercise, interesting activities, and social contact with people they enjoy can also be extremely helpful.

Most important is to understand (1) that people with dementia are adults with meaningful life histories, personal interests, individual desires, and a need for dignity and respect and (2) that behavioral “problems” are to a significant extent in the eye of the beholder. People with greater understanding and tolerance of behavior, that most people find trying, are generally better able to help people with dementia to get the most out of life.

I don’t mean to make this sound easy. Some people with dementia are so profoundly sad and lost in themselves that they may be impossible to reach. Some people are “scared to death” by the slightest change in routine. Some people completely deny that they have any need for help. Some people are abusive towards anyone who tries to help them, evoking responses in kind from many — if not most — of us.

But many people could be helped to overcome emotional problems that co-occur with, but are not caused by, dementia.

In an ideal world everyone with dementia would be able to get a sophisticated assessment to distinguish between the effects of dementia and other disorders and then to get the treatment that would be most likely to be effective. But in the real world there is a terrible shortage of physicians who understand the subtle differences between dementia and depression and other disorders. In the real world there is a terrible shortage of geriatric psychiatrists and other mental health professionals. And in the real world, paid and family caregivers usually do not get training and support to help them be more skillful with and tolerant of the people they care for.

Our nation needs major changes in policy to address these shortfalls. In the meantime, however, we need to understand that there are ordinary emotional causes for the sadness, disengagement, and anger experienced by so many people with dementia and that we caregivers can do much to meet human needs often neglected because of a frightening diagnosis.

Grandma is sad? Grandpa is nasty? Maybe they are clinically depressed and could benefit from treatment. Maybe she’s lonely and he feels he’s being treated like a child. Maybe it’s something else. But be careful not to jump to the conclusion that it’s because of the dementia.