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’

In healthcare it’s often the small things that make a big difference.

I was heartened to read a news story yesterday about the use of painkillers for patients suffering from dementia.

http://www.bbc.co.uk/news/health-14138884

Agitation is commonly associated with dementia and often treated with antipsychotic drugs which can accentuate the symptoms of the condition and cause excessive sedation. These drugs can rob Alzheimer’s or dementia patients of the last vestige of interaction with the world around them and reduce them to ‘zombie’ status.

One of the tragedies of dementia is that a patient is unable to tell his or her carers how they are feeling and bearing in mind that many elderly people experience painful arthritis or similar conditions, it is logical to assume that a high proportion of patients may be suffering undiagnosed pain. 

In a recent study, researchers the UK and Norway found that there was a 17% reduction in agitation symptoms in dementia patients given painkillers.

This is a wonderful initiative in easing the suffering of our most vulnerable patient community. My mother suffered from dementia for nearly ten years before her death but was fortunate to be cared for by an amazing team of people. During a routine discussion on her care, the matron advised me that they were giving my mother paracetamol four times a day. I asked them how they knew she needed this medication and they simply said – ‘her joints look painful so we thought it best to see if we can ease her discomfort’. The transformation was dramatic. Within a few days she was calm, and content. Her antipsychotic medication was discontinued and she became more alert and aware of her surroundings. I wrongly assumed this was standard practice so I am delighted to see that this ‘breakthrough’ is being made public.

How often we find a simple solution to a complex problem.

Andrew Lansley, please take note – to improve care and outcomes – you don’t always have to deliver complicated and expensive strategies. Keep it simple!