How Long Is A Piece of String?: The Progression of Dementia

A few years ago I snapped the cruciate ligament at the back of my knee in a skiing accident.  After it was repaired  I underwent a lengthy period of rehab.  My physiotherapist explained the  regime that he’d devised for me in some detail.  He make it very clear that I could not speed up the process and I had to stick to a rigid routine where the initial exercises seemed absurdly easy.   The speed of healing was going to be determined by the bodily processes involved.   He explained that trying to hurry these was not possible as they were predetermined.   Each set of exercises had been devised to promote  a particular stage of recovery .  Rushing  through them or skipping steps was likely to be detrimental to my healing.    For me working to a rigid time frame for treatment that was dependent on physiological change was fascinating.   It is not a concept that I’ve found lends itself well to dementia care.
Early on in my mental health career I worked with a woman whose husband was a retired forces officer.    She had recently been diagnosed with Alzheimer’s disease.  Her husband posed a huge list of questions on the theme of how many days/months/years would it take before she lost the ability to perform a variety of different skills.  He became quite cross that I could not provide definitive answers.   With more than a decade’s extra experience under my belt  I’m still not in a position to answer similar questions accurately.  I don’t think that I’ll ever be.  Sometimes our work with those who support a person with dementia can be around helping them to come to terms with this unpredictability.  This is especially important where they have been used to exercise a high degree of control over different areas of their lives.
If I had done some literature reviews to research this post I’m sure that I could have found examples of the average length of a particular process in a person’s dementia journey but I won’t be quoting these figures in my practice at any time soon.  For I know from experience that the range of numbers that make up these averages can be wide.  One person might experience a particular issue early on in their disease process whereas for others they might never encounter the difficulty at all.
Why is there not a  pathway that easily defines the length of time of a person’s dementia journey?   Well the processes that cause changes to brain tissue are not as uniform as the ones that  governed healing of my ligament.  Different mechanisms including the death of neurones, damage to blood cells   and infection might well be at play.    Another reason is that the starting post is not the same.  People’s brains function very differently at the time that their disease is diagnosed.  For instance I’ve spoken about cognitive reserve in an earlier post.  A person with high cognitive reserve could fare better than the norm after diagnosis because of their retained ‘pool’ of ability.  Conversely  they could  be seen to decline more quickly than average if signs of their illness have previously been masked because they have remained highly skilled when compared to the general population.   We also have to remember that it is not just neurological processes that are at play.  Physical health, the environment and the level of support that a person gets from friends and families and wider society might all be influences.
So how long is that piece of string?  Who knows!   I’ve come to the conclusion that maybe its length at the time of diagnosis isn’t predetermined.  Many strategies can be put into play to help preserve skills and abilities that might make it longer than you might have imagined.


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