Dementia and carers

Dementia is a cruel impairment that affects not just the patient but their closest family too. Around four years ago my dad was diagnosed and almost overnight his and my mum's lives changed, with my mum - who at 80 was still incredibly active and sociable - practically giving up her own fulfilling pastimes and becoming dad's full-time carer.

From that point to now the road to receiving adequate support has been circuitous and stressful: myriad council helplines with excruciating waiting queues. Unwieldy financial assessment forms (almost impossible for an elderly woman to navigate). Overly complicated home-help systems. And for me, the most striking thing remains a misunderstanding of the illness and its severity.

There is a wide misconception that dementia can be 'dealt with' and that simply coping is ok, doable. That because my dad isn't visibly dying, so to speak, it's fine to offer him and my mum minimal support - sure, they can do the rest, they've done it before. No problem. His head's not falling off, nothing to see here. The truth of course is different. Dementia patients, once it progresses, increasingly require 24/7 attention.

Various outsiders might well suggest 'get a cleaner' or 'bring the nurses in', but those types of support are often too rigid. Families bear the burden when those helpers go home, and sadly cannot understand the emotional cracks that naturally begin to open.

Over these last few years, I've seen a marked deterioration in my mum's health, as she's had to juggle the many jobs demanded of her, including those involving intimate personal care, often with little time for practice. She really needs a break, but, again, respite options are unclear, unnecessarily away from sight.

And as official support is unforthcoming or misdirected, I too have slipped into a role of de facto carer for both my parents to be on hand. You do it all because you care and you have to, but everything becomes not normal very fast. Previously ingrained routines begin to unravel and the slightest situation becomes a pressure cooker. New roles put immense strain on family relations.

I want to see an improved standing for dementia and indeed all mental illnesses in the consciousness of central government and therefore local councils. Ultimately this could give these conditions greater credence, which in turn would encourage and enable vastly better networks for patients and their families, and give both the chance to enjoy exactly what they deserve - more normal day-to-day lives.