Adults living with dementia and disability need research funding

I heard a prominent speaker talk about studies at the National Institute of Aging.  The speaker described several new large and well funded trials aimed at preventing illnesses associated with aging, such as dementia and disability.  These studies are terrific, and worthy of funding.

I was disappointed, however, that little was said about funding for studies of older adults already living with dementia and disability.  Research in prevention will not help these patients.  I asked: where is the funding that focuses on improving the quality of life for these patients?  The speaker replied that the National Institute of Nursing Research is the funding center for end-of-life research.

Aging research has always had a strong focus on quality of life concerns, but I worry that the emphasis has shifted too far toward the “successful aging” model.  This model sets up an unreasonable expectation that if you do all of the right things (eat right, avoid smoking, exercise your body and mind) you will be able to play tennis and Scrabble until you die.  What about those patients, like the many I care for, who live with cognitive impairment, disability and multi-morbidity for years?  Have they “failed aging”?  Cancer centers made the same mistake for years, with slogans like “focused on the cure” - what about those patients who can’t be cured?

Here is some empirical data that sets the table for this issue.  Tom Gill was the lead author of a terrific study published in the New England Journal of Medicine recently.  Dr. Gill has been following a cohort of older adults since 1998, and 383 of 754 died and were eligible for the analytic sample for this study.

Ability to complete basic activities of daily living (such as toileting, eating, dressing, and transferring from a chair) was assessed monthly.  Disability was defined as the need for assistance with these activities of daily living, and was rated on a scale of one to four.  Dr. Gill used some fancy statistical methods to plot disability trajectories in the last year of life.  Here are two major points from the study:

  • Nearly half of elders who died had at least one disability one year prior to death
  • There was surprising heterogeneity in the disability trajectories.  Patients with organ failure or frailty were about as likely to have no disability at least until the last 2 months of life as they were to have persistently severe disability for the entire year before death
  • Only about 40% of subjects with cancer had what we might consider a prototypical cancer trajectory, as described most prominently by Joanne Lynn and June Lunney as sudden and catastrophic disability in the last few months of life.

Dr. Gill makes a nice point about these findings in the discussion:

“This heterogeneity in disability trajectories suggests that personal care needs at the end of life cannot be easily predicted for most older persons and raises concerns about policies that establish benefits for end-of-life care primarily on the basis of disease-specific criteria.”

Here’s the thing I’d like to come back to: nearly half of these elders were living with disability for the last year of their life.  I’m sure a substantial proportion were disabled for years, and a minority may have been disabled for decades.  Shouldn’t we focus funding on caring for those patients?  Is it ethical to focus funding on “compressing disability” until just before death, leaving “end-of-life” funding for one of the smallest and most poorly funded NIH institutes?

Alex Smith is an Assistant Professor of Medicine, Department of Medicine, Division of Geriatrics at the University of California, San Francisco who blogs at GeriPal.

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