Many families have told me that dementia is a diagnosis worse than cancer.
An excellent article published in the New York Times on June 20, 2010, [ see the link below *], and written by Katy Butler [the patient’s daughter], describes eloquently what living with dementia can be like for many families. She summarizes the problems caregivers deal with, the effects on the family, and the ethical choices they sometimes face when confronted with the dilemma of “what is the right thing to do”.
Perhaps the main point she emphasizes is that interventions by well-intentioned doctors may worsen or prolong suffering: when physicians fail to consider the goals of individual patients, and focus on ‘fixing’ only a specific organ/system rather than treating the whole patient, they frequently cause more harm than benefit.
And, one of the guiding principles of medicine is, First, Do no Harm!
Based on the ethical principle of autonomy, every person has the right to refuse or withdraw any treatment. To exercise that right, and before making a decision, you should seek relevant, up-to-date information. Then, based on personal values and goals, you can choose to accept or reject any option being offered.
* My Father’s Broken Heart: how a pacemaker wrecks a family’s life.
http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html?pagewanted=all[click on the link, or copy and paste it into your browser; you can also go to the NYT website and look this up under their archives]