A Dose of Realism about Advanced Dementia

Dementia isn’t one disease.  Like cancer, dementia is a family of different diseases that have important similarities.  The diseases that cause dementia all lead to progressive memory loss and brain dysfunction.  Dementia is caused by Alzheimer’s disease, vascular dementia, Parkinson’s disease and several other rarer brain disorders.  The different diseases that cause dementia cause different symptoms initially and have different treatments.  But unfortunately all the treatments are temporary and only slow the progression of dementia.  Advanced dementia has the same constellation of symptoms regardless of the cause – profound impairments in memory, language and mobility.

Dementia is a progressive incurable fatal illness. I learned that in my residency over ten years ago, and the newer treatments haven’t changed this fact.  On average, patients survive for 4.5 years after diagnosis, but some live as long as a decade.  There are incurable cancers with better survival rates.

Even though the poor prognosis of dementia isn’t news, apparently the word hasn’t spread.  An important study in this week’s New England Journal of Medicine studied the prognosis of patients with advanced dementia and followed the care they received, their family’s expectations and their medical complications.  Over 300 patients with advanced dementia who were admitted to nursing homes were followed.  They all were unable to recognize family members, had minimal verbal communication, were completely dependent for all daily living activities, were incontinent and were unable to walk independently.

The results of this study were depressing.  Over half of the patients died within 18 months.  In their last 3 months of life over a third had distressing symptoms like breathlessness and pain.  Only a fifth of the patients were referred to hospice care.  Despite their terrible prognosis, over a third of the patients underwent a hospitalization, emergency room visit, tube feeding or intravenous feeding.  The one bright point was that patients whose families understood the poor prognosis of dementia were less likely to receive intensive intervention.  Though the study doesn’t state this, I pray this translated to earlier hospice referral and better symptom relief.

As we all live longer and as we are better able to treat and prevent heart disease and some types of cancer the incidence of dementia will increase.  Families deserve honesty about the course of this terrible illness, and patients deserve comfort.

Learn more:

Time article:  Redefining Dementia as a Terminal Illness

New England Journal of Medicine article:  The Clinical Course of Advanced Dementia

The source of the statistics about survival after dementia diagnosis is this Medscape article:  Survival After Dementia Diagnosis Depends on Age, Sex, Disability (click on the first search result)

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