Dementia: Will I Catch It?

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Last week, after the publication of Greater Risk of Dementia When Spouse Had Dementia? The Cache County Study (abstract), practically every newspaper health section and blog was featuring this type of headline:

Are you frightened yet?

I was, so I decided to read the article from the Journal of the American Geriatrics Society as well as the special editorial that addressed the research and was published in the same issue of the journal. These articles are not freely available on the web, so to read them in full you will need to go to a library, perhaps at a local hospital.

Here are some interesting observations about the research.

  • Caregiving itself is not measured in this study, so some of the headlines are wrong. The researchers do not know who cared for a spouse with dementia and who did not, or to what extent people helped care for a spouse. “Nor were data were collected on actual caregiver activities or stress.” Thus the study was not designed to assess whether caregiving itself is a risk factor.
  • According to the special editorial in the journal, thousands of research papers have associated caregivers with increased psychological and physical problems. This phenomenon is seen across a wide variety of diseases, not just dementia.
  • The  authors of the study point out that they did not measure such potential risk factors as smoking, alcohol, diet, exercise, and access to medical care.
  • It is important to note that even with the limitations and weak measure of exposure, 85 percent of the “exposed” spouses were not affected.
  • Cashe County, Utah, where the study took place is 92 percent white, so it would be hard to generalize the results to the more diverse population of the United States.

Now that you have read these observations, go back and read the headlines again. They do not make a lot of sense and are highly misleading, so we should not be so alarmed. In fact, the research itself, while suggestive, does not demonstrate who gets dementia and who does not. This does not mean that the research was low quality, it was good research, but it does mean that it is no where near definitive (we don’t have to be scared).

In his editorial about the study, An Ironic Tragedy: Are Spouses of Persons with Dementia at Higher Risk for Dementia than Spouses of Persons without Dementia (citation), commentator Peter Vitaliano, Ph.D. from the University of Washington School of Medicine writes that “rather than being alarmed by the results reported here, stakeholders, policy makers, clinicians, and researchers should be motivated to support and design appropriate studies that, if proved positive, can be used to plan interventions and preventions to prepare for the projected increases in dementia expected in the decades ahead.”

So maybe we should be a bit worried or concerned about ourselves when we spend significant time caring for a spouse with a serious medical condition. But any anxiety, at least for the time being, should help us focus on the most important lesson from that can be taken from this research. The study reminds us that matter what degree of caregiving a well spouse provides for a sick partner, the caregiver should seek to maintain as good health as possible by arranging assistance from others, being sure to sleep, exercise, and eat well, and participating in activities that are intellectually engaging and mentally stimulating.

2 thoughts on “Dementia: Will I Catch It?

  1. Wow. I am so glad that you looked into this! Do caregivers need any more stress that they already have? And why exactly do we need to spend time on this kind of unsubstantiated fear-mongering? We have enough legitimate worries. One of them being how to find the time to exercise and eat right ourselves. Maybe, if we can find the humor in these ideas, we can turn this news hype to our advantage.

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    • Yes it is unfortunate how bonafide, good quality medical research can be distorted by headlines in the media. From my point of view, as a former caregiver with more experience to come, I am continually reminded of the importance of seeking/finding support from others, in the ways Gail Sheehy describes in her book. The support of others ensures that each of us has at least some respite time for ourselves, thereby decreasing potential risk factors that cause us to also become less healthy as we support loved ones.

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