I strongly believe dementia could be better managed with non-pharmacological interventions used to promote individually perceived wellness and happiness. Often with no treatment options, and the realisation it is a terminal illness, it is a difficult disease to understand.
However to accept it as a disease with disabilities to be managed, rather than symptoms contributing to someone’s demise would be far more productive. It would have also been far more useful if service providers had focussed on what assets I still had [have] to offer, rather than on my deficits. I had features prominent to dementia at least as far back as 2006, which were first formally examined in 2007. They included impaired cognition and comprehension, mild speech difficulties and language dysfunction, episodic memory loss, mild anomia and surface dyslexia. Compensation for these disabilities was initially very easy, but in 2008 further brain scans and neuropsychological tests were performed which showed increased deficits in the semantic categories, increased anomia, object and auditory agnosia, increased surface dyslexia, prosody and behavioural changes; my number cognition was also impaired. A positive diagnosis of dementia was made, probably semantic, which was confirmed with a second medical opinion interstate in 2009.
Pharmacological interventions were and still are unavailable to me, and due to this, and my proactive response, treatment was and still is positive psychology and other non pharmacological interventions. The advice of medical practitioners and some service providers was to give up work, give up studies and start living for the time I had left. This prescribed dis-engagement seemed at odds with what I perceived to be positive living, so I ignored it, instead developing strategies to be productive and setting up a regime of activities and lifestyle changes specifically focused on overcoming the symptoms and meaningful engagement.
Neuroplasticity exercises, Transcendental Meditation, self-hypnosis, diet, herbal supplements, exercise, education, volunteering, counselling, creative writing, poetry, music therapy, and laughter have ensured I’ve reached wellbeing through engagement, fun and meaning. Resilience has also been vital to remaining positive, so if you don’t have a matured resilience now in your own life, I would strongly recommend you work on it. A phenomenological approach to this illness is my other key to positivity, i.e. studying the nature of things as they are, and investigating and describing my conscious experience in all its varieties without reference to the question of whether what is experienced is objectively real.
My blogging has allowed me to do this, not only by pushing me to think about it, but to try to express it in a way that has clarity and is meaningful for others to share or to learn from. Treating my symptoms as the gateway to supporting disabilities, not managing them in ways that restrict and hinder, and managing emotional changes with counselling and positive engagement, rather than treating symptoms with drugs, have become paramount to my well-being and perceived longevity.
If I had been referred to the brain injury unit (in the early stages, dementia is not that different), I would have been proactively treated to live the very best life possible with the injury I have.
Suggesting I disengage from my meaningful life, and take up activities other people thought might sustain my soul, was not only illogical, it was insulting. Initially it seemed I should join in, I should be grateful for the services people are trying so hard to provide, often with limited funding and resources. But I have found mostly I get no enjoyment from engaging in things that I was not interested in before (doh!!). Why I wonder, are most of the medical profession and service providers not more actively looking for ways to improve our lives in truly meaningful ways, as well as enhancing our perceptions of longevity, rather than simply planning for our demise?
Please don’t simply shut us away in the activities rooms, doing things others perceive we might enjoy or get meaning from. Ask us what we want, who we used to be, and then work with us rather than for us, in an effort to allow us to continue with our lives in productive and meaningful ways.