Pain in dementia - see change, think pain
We can bury our heads in the sand all we like, but we can't stop ourselves getting older. In 2010, 17% of the population were over 65, and by 2035 it is estimated that figure will be 35% (1), with centenarians set to be the fastest-growing age group for decades to come. (2)
The great spectre of our increasing lifespans is the risk of dementia. One in six over-80s (and one in 14 over-65s) have dementia, adding up to a total of 800,000 people in the UK in 2012 (5). Of course, that still means five in six very elderly people still have their full faculties. What's more, a recent British study (3) suggests that in the future, this five in six chance may be even higher, with people born in the second half of the 20th century less likely to get dementia than those born earlier.
Even so, as Bette Davis put it, 'old age ain't no place for sissies'. Pain isn't an inevitable part of ageing but it's certainly common - half of all over-65s and three in four people living in residential care are in pain at any one time. (4,5) Add the two together and there is real potential for suffering.
Most of us take it for granted that if we're in pain we can do something about it - and if we can't, we can tell someone who can. But many people with advanced dementia can't communicate. They don't have the words to ask for pain relief and they can't point to where it hurts. Instead, they may show they're upset in the same way a small child does - by getting agitated or aggressive. If we don't recognise their pain, we can't do anything to help.
Recent years have taught us that giving strong sedatives to people with dementia carries a real risk of harm, and as a result national guidelines have started trying to limit their use. In some cases, carers are left with inconsolable or disruptive patients. Now a new campaign aims to raise awareness of pain, rather than 'just their dementia', as a cause for their behaviour.
A new survey of patients with dementia in care homes, supported by the Alzheimer's Society, shows that two thirds of care homes underestimate the chance that their demented patients are in pain. Many staff don't have adequate training in assessing pain in patients with dementia, or don't have guidelines to help them recognise it. And hundreds of thousands of people in the community looking after loved ones at home don't have formal training either.
But a simple tool, based on the 'PAINAD' (Pain Assessment in Advanced Dementia scale) could help:
P - Pick up on mood (are they withdrawn or irritable?)
A - Assess verbal cues (are they muttering under their breath, moaning or crying out?)
I - Inspect facial expressions (are they grimacing or looking frightened?)
N - Notice body language (are they pacing, clenching their fists, fidgeting or curled up as if trying to hide?)
Every elderly person with dementia is someone's mother, grandpa, brother or aunt, and they deserve all the help we can get in relieving their suffering. One day, it just might be us.
1) www.statistics.gov/hub/population/ageing/older-people/index.htm; Accessed 17 Sep 2013
2) http://www.parliament.uk/business/publications/research/key-issues-for-the-new-parliament/value-for-money-in-public-services/the-ageing-population; Accessed 17 Sep 2013
3) The Lancet, Volume 382, Issue 9902, Pages 1384 - 1386, 26 October 2013
4) National Statistics Online. http://www.ons.gov.uk/ons/publications/index.html?pageSize=50&sortBy=none&sortDirection=none&newquery=Self-reported+health+problems%3A+by+gender+and+age; Accessed 17 Sep 2013
5) British Pain Society, British Geriatrics Society. Age Ageing 2013;i1-57