A friend recently sent me an article on a dementia directive designed by Dr Barak Gaster from the University of Washington School of Medicine. He had consulted with specialists in geriatrics, neurology, palliative care and psychiatry for several years. The directive defines mild, moderate and severe forms of dementia and offers options of the kind of medical interventions that patients would want and not want at each stage of the illness. (www.dementia-directive.org)
Dementia is considered to be on the increase worldwide and it is estimated to rise from 47 million in 2015 to 132 million by 2050. (jamanetwork.com) People are witnessing first hand the effects of living with a loved one with dementia and they in turn are recognising the advantages of such directives. This is one of the reasons cited for having a dementia directive specifically. It is felt that standard medical directives do not adequately cover the specifics of dementia. A standard directive may cover only if a person is in a permanent coma or vegetative state. Dementia, however, is progressive, taking anything from 5 to 20 years to develop. The average time for a severe form of dementia to develop is 8 years. All this makes it very unclear when a person is, specifically competent, to direct their own care.
As with most difficult decisions, it is natural to want to avoid making them and think that it won’t happen to you or that others will take care of it. It seems though that those who have had personal experiences see the benefits of having such a directive in place. They recognise the anxiety that family members experience in making those decisions and not knowing whether their loved one would want such care. Others say that they want to avoid conflicts arising within their families since there are different views on what should be done during the course of an illness and possibly different medical interventions available at a particular time. One valuable resource available is The Conversation Project which offers tools to help promote end of life conversations and to assist in communicating your wishes to those who matter. (the conversationproject.org)
What is undeniable is that it is best all round for us to communicate our preferences to our family about the kind of medical care we would want and to make copies of such preferences for both family members and our doctors.
We would love to hear about your directives or invite you to leave a comment.