By Dr. Amanda Hill MD, FRCPC (biography and disclosures)
What I did before
In providing care to frail and severely demented elderly we see many patients with aspiration pneumonia, swallowing problems and failing to eat. We spend many hours and dollars exploring these symptoms and considering alternate routes of feeding like tube feeds. We also see many patients fail to get better even when we have adequately addressed their acute medical issues. The referenced study provides us with the evidence we need to appropriately inform families and colleagues that this is part of the natural history of severe dementia.
What changed my practice
The Clinical Course of Advanced Dementia, Mitchell SL, et al. study followed 323 patients in nursing homes with severe dementia – dependent for all ADL’s (Activities of Daily Living) and severely impaired with an average time since diagnosis of dementia of 6 years and time in facility of 3 years.
These subjects were followed for 18 months. 54% died in the study period. About 40–45% of the subjects had an episode of pneumonia, fever or eating problems. These complications carried a severe prognosis with mortality at 6 months of 46.7%, 44.5% and 38.6% respectively. 90.4% experienced eating problems in the last 3 months of life. Interestingly other events such as CHF and stroke were rare in the last 3 months of life suggesting that despite effective treatment of certain acute inter current events most patients finally succumbed from the neurodegenerative effects of dementia on swallowing and eating.
Distressing symptoms were present in up to 40% of subjects in the last 3 months of life and burdensome interventions were undertaken in 40 % of those who died.
What I do now
- I educate families about the likely outcomes in severe dementia.
- I address end of life issues with more data to guide my discussion.
- I am more confident attributing eating and swallowing problems to severe dementia.
- I limit the search for reversible factors and aggressive interventions.
- I always include an assessment of swallowing in evaluating patients with neurodegenerative disorders.
Reference: (Note: Article requests require a login ID with the BC College of Physicians website or UBC)
The Clinical Course of Advanced Dementia, Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, Volicer L, Givens JL, Hamel M, N Engl J Med 361:1529, October 15, 2009 (View article with: CPSBC or UBC)
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The natural history of severe dementia…
I found your entry interesting do I’ve added a Trackback to it on my weblog :)…
This brings up a point in “directive of care” by living will or power of attorney (for personal care). Since the potentially high mortality events or complications in demented nursing home patients, should there be some preset directives not to actively or invasively treat these, and let demented patients die in peace and dignity, and to avoid unnecessary and unrealistic, or simply “cruel” prolongation of “life”. We don’t have to think of or advocate euthanasia: simply witholding treatment for demented seniors will be kinder and considerate for patient, family and society.
This was a very useful article, although I wasn’t sure about the reviewers final comment indicating an intention so assess swallowing in all patients with neurodegenerative disorders. This would seem to be contrary to the idea of accepting this as an expected consequence of dementia. I don’t know that I’d ask for an OT swallowing assessment or radiographic swallowing assessment unless the patient was still functioning quite well and had complaints regarding eating or clear aspiration affecting quality of life.
Agree entirely with note from John Edworthy
Thank you for the numbers. I believe they will facilitate discussions with my patients and their families