Alzheimer's and dementia are words most of us fear. We may know those who do or have suffered from these conditions in their later years, and dread the possibility of diagnosis for ourselves. It seems a place from which no-one returns, except briefly and with painful fleeting recognition of what they have lost.
Penny Garner is convinced it need not be so, and has devoted some fifteen years to ensuring suffering from these conditions need not be the painful descent into oblivion it continues to be for so many.
Ms. Garner is the mother-in-law of Oliver James, distinguished practitioner and writer on aspects of the mind and mental health. The recent success of his commentary on the way we live now, Affluenza, has possibly overshadowed Remind Me Again, his title on age and memory loss. Penny Garner was quick to point out that memory loss and dementia are not the same thing. Putting the newspaper in the fridge may be a temporary abstraction - failing to remember your spouse is dead or where you are suggests a far more serious condition.
In such circumstances, common sense as we normally apply it won't work, because the "photo album" of our brain, as Garner describes it, slowly loses the points of reference which have constructed our personal realities. These "photo albums" are not simply reference manuals, reminding us who are our relatives or friends, how we address the butcher, baker and flower arranger, but also how we feel about people, situations and what's around us.
Feeling increases in importance as the facts we can hold on to diminish, with the result that deep trauma, managed successfully for decades, can erupt on a hair trigger which only the sufferer can understand, yet be unable to communicate. Ms. Garner proceeded to offer a role play designed to help the audience understand Alzheimer's from the inside, which showed how one's "photo album" could work against effective communication with a world from which one was increasingly alienated, and how it might be possible to use that same "album" to improve this.
Alarmingly, over 50% of those with dementia are on anti-psychotic drugs to prevent "episodes" which cannot be readily "managed" and 25% of those will die prematurely. Those with dementia, however, are not delusional - they don't believe they're Napoleon or a giant caterpillar, and their long term memories are largely intact.
What's needed are techniques which can make the condition tolerable for the patient, enabling them to have a continuing quality of life. The principles are simple; don't ask questions (which may distress and alienate), never contradict (which may do the same thing), and learn to at least accept the repetition which is an unavoidable element.
One aspect of the distressing growth of diagnosis which wasn't addressed here is the temporary nature of much present day culture - if your "album" consists of ephemeral music, video games or episodes of Big Brother, will these be around to reassure sufferers in another half century or so?
Time: Aug 24 at 17:00
Copyright Bill Dunlop August 2008