The cruel and long goodbye

MIND MOVES Marie Murray Alzheimer's is a progressive degenerative neurological disorder causing deterioration in crucial cognitive…

MIND MOVES Marie MurrayAlzheimer's is a progressive degenerative neurological disorder causing deterioration in crucial cognitive capacities. It is distinguished by depletion in memory and language, disorientation in time and place, misplacing belongings and potential eventual corrosion of competence in everyday familiar physical and self-care tasks.

Alzheimer's arises from nerve cell destruction or abnormal protein in the brain: the so-called plaques and tangles microscopically visible and metaphorically descriptive of the entanglement of the mind.

Its triggers are many. Risk increases with age. Family patterns suggest a genetic component. The condition may also be found in some people who have Down's syndrome with reported increased risk in their siblings. Additionally there are suggested environmental activators such as head injury. There are proposed environmental averters such as the consumption of oily fish or Omega 3 fatty acids, while cerebral callisthenics and other mental workouts are recommended to maintain nimbleness of mind.

In Ireland there are almost 40,000 people with dementia, Alzheimer's being the most common form. There is no single diagnostic test: its early signs may have a multitude of explanations. Memory tests and brain scans assist diagnosis as does excluding other potential causes of dementia such as Vascular Dementia, Lewey-Body, Frontotemporal lobe dementia (including Pick's disease), Parkinson's, and alcohol-related dementia (Korsakoff's syndrome).

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Alzheimer's progresses in stages over a number of years, each stage heralding new challenges and requiring increased personal care. But much can be done to delay Alzheimer's course: medication to assist anxiety, memory and retention of new information, practical strategies to divert difficulties while early diagnosis allows time for important life-adjustment and design. Families need time to organise short and long-term support, time for consideration and decision on available treatment options and to make financial and legal arrangements that may be necessary later.

From a psychological perspective, Alzheimer's contains all that we fear most. What makes it so frightening is its capacity to change irretrievably the person you love. It is the ultimate threat: annihilation of mind, obliteration of memory, alteration of personality and destruction of life itself. It is loss upon loss, death before death, life rewound, memory erased and cognition confused. It is a long goodbye.

Alzheimer's may begin in mild forgetfulness: the elusive word on the tip of the tongue, evading naming. It may involve the repeated story, the thrice-told joke, the forgotten request, the lost belongings and frustration of disremembered phone numbers. Sometimes it is the disappearance of a question while asking it, evasion of an explanation while providing it, of a story in the midst of telling it, or re-reading the pages of a book, seeking their sense and being confused by their complexity. It is arrival at the top of the stairs without recollection of what object was desired when that ascent began, finding the hairdryer in the fridge and the butter in the bedroom, as the thoughts and objects of life hide in a world where one becomes increasingly.

This is what makes the onset of Alzheimer's so difficult: because it may mimic the memory loss of other conditions including stress, work overload, the side effects of drugs, infection or depression. It is an enemy to be feared, because it is an enemy in disguise, camouflaging itself in common forgetfulness. With Alzheimer's there is no sharp swipe of the grim reaper's scythe but an invisible stalker, lurking in the intellect, picking its way through the crevices of consciousness, attacking critical faculties, dismantling communication, confusing comprehension and reaping what remains of people's remembrance of the events of their lives.

What is it like to observe someone you have loved all your life slowly metamorphose into another, identity sabotaged in this insidious way? Only those who have lived this reality know. That is many thousands of people who have encountered this enemy: prisoners of war returning, they know the shape of its territory, the strategies for survival, they have unmasked its face, heard its voice, learnt its language and identified its weakness. They have sourced their own amazing strengths in dealing with this invader. Their bravery is unquestionable but what is so surprising are many who say that Alzheimer's was more manageable than they initially imagined.

Amidst the burden of care, and let us never minimise the burden that can be, are moments of humour and of compassion in the role reversal in which the child parents the parent. They say that identity is not lost, the opposite happens. It is celebrated and protected. Like nations who guard their culture at the threat of invasion, families guard the identity of the person whom Alzheimer's afflicts so that what is being erased by the disease is being simultaneously inscribed in the annals of other's memories to forever remember those who cannot.

mmurray@irish-times.ie

Marie Murray is director of psychology at St Vincent's Hospital Fairview.

Alzheimer Society of Ireland Confidential Helpline 1800 341 341.