So what's this all about?

In summer 2008 my mother (then aged 77 and living very independently) went suddenly into a kind of breakdown - she stopped eating, told her GP she felt suicidal, lost some of her mobility, and started to behave quite oddly, including forgetting things she had been told and also displaying distinctly worrying and clearly uncontrollable emotional reactions to situations.

So you would think that a woman of her age, with a history of diabetes and high blood pressure, displaying not just anxiety and depression but also new issues with memory and emotional processing, might raise some flags in the minds of the physical and health professionals brought into her orbit. One likely scenario, given the sudden and stepped progression, would be to investigate whether she had suffered from any vascular issues and perhaps was showing early onset of vascular dementia in light of her hallucinations as well. Instead, the response was to put in thrice-daily visits from Social Services carers who each spent about 15 minutes with my mum to make sure she was eating, and under whose care she lost 2 stone in a month. And that was the beginning of my mother’s needs being minimised as ‘social’ rather than ‘health’ - as is currently the case for so many people whose HEALTH needs as people with dementia are currently being unmet and whose needs are not just being overlooked but are being wilfully ignored or ‘not seen’ by those in whose hands their care is placed.

That was the start of a (so-far) 18 month labyrinthine descent into the nightmare that is the current state for the majority of elderly people who begin to experience the illness of dementia - yes an illness, a terminal illness of the brain, not 'memory issues' or 'natural ageing'.

At every stage, we have experienced 'not seeing' of my mother as a person, 'not seeing' of the illness eating away at her personality and her independence, 'not seeing' of the need to provide timely and supportive care for a woman with an incurable illness called dementia. Now imagine replacing 'dementia' in that sentence with another terminal illness and you start to see the collective 'not seeing' that is going on, You also start to see the medical and human neglect of a duty of care to over three quarters of a million people currently living with various forms of dementia in the UK.

This blog will set out our dual journey and we hope will pull back this veil of ‘not seeing’ and unmask it for what it is: a deliberate relegation of the needs of those with dementia, mostly for reasons of cost, amounting to a tax on dementia and an unlawful avoidance of caring for their health needs within the NHS.