Dementia – a most heart-breaking disease

The Prime Minister’s announcement yesterday, promising to double the funding of research into dementia is most welcomed, but will only scratch the surface of ‘a crisis on the scale of HIV’ as described by the PM himself.

If obesity and diabetes are a public health ticking time bomb, dementia is a minefield already detonated. In the UK there are currently 800,000 sufferers of the degenerative and distressing disease. This figure is set to reach 1 million within the next decade. The Alzheimer’s society reckons that 1 in 6 people over 80 suffer with dementia and as we continue to live longer this isn’t something that’s going to go away.

The sum allocated to research, £66 million is a fraction of the estimated cost of dementia – running at around £20 billion each year. It is also estimated that patients with some form of dementia occupy a staggering 25% of NHS hospital beds at any given time.

Although research is vital and desperately needed, community provision of care for these most vulnerable of patients is a priority right now. As the daughter of two parents who suffered from dementia for the final ten years of their lives, I would like to highlight another priority – to educate the general public in how to respond to an elderly (and sometimes not so elderly) sufferer.

It is very easy to become frustrated with someone who keeps repeating the same question over and over again, who forgets who you are and wanders off the minute your back is turned. It’s very easy to feel embarrassed as your father or mother talk nonsense to strangers and invade the personal space of shoppers/sightseers/diners as they go about their own business. It’s easy to get cross as someone who used to be your world and your rock just picks things up in shops and walks out without paying or says incredibly rude things to your friends.

As my father became lost in his own private and confusing world, he could remember every code he used as a signalman in submarines during the Second World War, but he couldn’t tie his own shoe laces. My mother, who was sociable, funny and kind, alienated so many friends and neighbours as her sense of appropriate behaviour left her but could still recall her children’s greatest personal achievements.

But there were wonderful moments too – as a window occasionally seemed to open briefly and bring my precious people back to me for the most fleeting of time. Just before my father finally needed to be admitted to a nursing home, my daughter, about ten years old at the time, baked her granddad a birthday cake and decorated it with loving care with chocolate buttons. Daddy, who at that stage could barely string a sentence together, let alone make sense with words, beamed at the sight of this gift and said ‘Ellie – if I win the lottery – I’ll give you the lot!’ Dementia sufferers may seem very odd and a little frightening at times, but the person you knew and loved is still in there – somewhere.

As the dementia ‘crisis’ was discussed on television yesterday, a lady suffering from Alzheimer’s spoke with great eloquence and some difficulty. At the end of the interview, she was asked if there was anything else she would like to say and her powerful and emotive words should be noted by us all.

‘Love us for who we are and be with us. We are normal people with special needs’