Behind the mask

A new study is one of the few to examine pain in non communicative residents with dementia, writes Megan Stoyles.

Enrolled nurses and personal care attendants in aged care facilities are better at recognising pain in non verbal residents with dementia than registered nurses, according to a National Health and Medical Research Council (NHMRC) funded study.

Dr Pamela Johnson, manager of aged care at Melbourne City Mission, studied 186 people in several aged care facilities for her doctorate, and recently described the findings to a pain network forum in Melbourne.

"Musculoskeletal diseases are common in older people. In addition, contractures are common in several stages of dementia, but self-reporting of pain diminishes as cognitive impairment increases.

Hence, undetected pain is likely to be higher among those who cannot communicate pain," she said.

Johnson tested the MDS, IORP, Abbey, PAINAD and Noppain pain assessment tools to see which was the most easily understood and used.

She found the reliability of pain assessment could be improved; formal pain assessment could be used by staff more. Face, voice and body language are most important in pain assessment, but needed to be assessed when movement was involved, and not just with patient seated or in bed.

There were differences in reliability in observing pain between staff, with enrolled nurses and PCAs more reliable than registered nurses. This was due to their greater familiarity with, and knowledge of the resident, and 'intuition' about their responses.

Johnson noted there was ambivalence about the tools that were used in the research, it was difficult to gauge the cause of body language, and not all staff could see physiological changes.

Abbey, PAINAD and Noppain were the instruments used for assessing in the research but only parts of each were useful for the nurses and caregivers who wanted a tool that was quick, and was formatted to be 'at a glance' and with a 'for example' guide, which Noppain had.

All staff said their basic training did not provide information on assessing pain, and there were differences between facilities in assessment of pain.

Seeing pain in older people with dementia was tricky, Johnson found. The common response was that 'dementia masks a lot of this stuff'.

Professor Stephen Gibson, deputy director of the National Ageing Research Institute (NARI) supervised Johnson's thesis and highlighted the need for more research into pain amongst residents in residential care. This, he believes, been "neglected, especially amongst those with communication problems".

"While there are more than 20 different scales for measuring pain amongst non verbal older people, there has been little comparison between them for effectiveness, which should be important for ensuring it is measured and treated," he said.

He was instrumental in incorporating the study into the NHMRC funded research into pain, the background documents for which state that over 80 per cent of nursing home residents suffer from some persistent pain complaint.

The documents go on to say: "Undetected or under-treated pain can have serious adverse effects on frail older adults including poorer cognitive performance, reduced quality of life, increased depression and functional disability as well as more frequent behavioural problems, such as aggression, wandering and disruptive vocalisation."

These adverse effects contribute to greater demands for daily care and a corresponding increase in health costs. In the adult population, the group at most risk of undetected pain and poor pain management are frail older persons with communication problems and particularly those with cognitive impairment. The number of individuals living with cognitive disorders is expected to triple over the next 20 years and this group will constitute more than 90 per cent of the residential care population.

Despite this overwhelming demographic trend, the documents note there have been very few studies investigating the pain experience of older adults with cognitive impairment and our ability to assess pain in this group remains shamefully inadequate.

Professor Rhonda Nay of La Trobe University, who co-supervised Johnson's thesis, agreed that pain in people with dementia remains undertreated and underrecognised

"Assessment tools are not used consistently or appropriately. Importantly pain must be assessed on movement, not just observing the person 'at rest'," she said.

"Direct care staff are likely to know the resident more than the RN - so relying on knowing the resident means RNs could observe less pain.

"Staff claim that the way they recognise pain is by 'knowing the person'. This raises real issues if one relies on it when there are staff changes, turnover and use of agency staff who do not 'know the person' and pain assessment and evaluation of treatment is not documented."

Pain medications are "pretty useless" as staff do not give them unless pain is recognised and the research is saying it is not so. It would be better if the person has a pain generating condition to give analgesia routinely, she said.

"I think there needs to be two types of tool - one for direct staff that is a simple screening tool and then a more searching instrument for professional staff to use when the pain is flagged."

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