Many family carers say, “I can cope with what he can no longer do, but I can’t cope with what he has started to do.”
It is estimated that currently in New Zealand there are over 48,000 people with dementia and that by the year 2050 there will be 146,699 or 2.7 per cent of the population with a diagnosis. At the Alzheimer’s International conference 2012 it was stated that every four seconds in the world there is another diagnosis. There has been a 24 per cent increase in dementia beds available in New Zealand from 2009 to 2012. The Bupa 2012 census showed that 62 per cent of residents in our care had mild to severe cognitive impairment. All evidence is telling us that our quantity of life expectancy has increased but not necessarily our quality of life.
People with dementia have difficulty using words so use other ways to express themselves. Ninety per cent of people living with dementia will experience behaviour that challenges. The behaviours generally only appear at certain stages of the illness and nearly always resolve with time. The more we know about the person and their life story – as in Person First, Dementia Second – the better we are able to understand their ‘new language’ and so are then able to respond meaningfully. Understanding these behaviours requires us to focus on needs to be met, rather than a behavioural problem to be managed.
It is important to recognise that behaviours associated with dementia are not bad behaviour on the part of the person; these symptoms are often associated with chemical changes in the brain or by social and environmental triggers – the behaviours are due to the dementia.
In residential care our focus is to minimise behaviour by creating ‘dementia friendly environments’. The purpose of the building does not necessarily match the service that you are now delivering from those walls. Management and staff need to be creative and innovative as to how they set the ambience. Many Bupa homes have established ‘destination points’ or ‘places of interest’ both inside and out where residents are free to enjoy and participate in an activity. Shops, pubs, sewing rooms, offices, nurseries, cafes, painting corners are a few examples of where residents can enjoy their day with some meaningful activity. Memory walks created by a series of photographs from the past local area can be of great interest and a topic of conversation for family members and visitors. These environmental stimuli can provide purpose and opportunities to reminiscence while maintaining dignity for the person and their family. Outdoor areas need to resemble ‘a kiwi backyard’ where residents can sit outside or potter in the garden. Night time lighting can allow a safe place for residents to enjoy the night sky and fresh air to calm restlessness or agitation.
Verbal and physical aggression is often presented when personal care is being delivered. In the past this may have been managed by having an antipsychotic medication charted. Staff need to become ‘detectives’ when drilling down to find out the reason behind the behaviour.
A recent example of how staff at a Bupa home managed this was to firstly do an analysis of the behaviour. Care staff noted that the behaviour only happened in the shower room and never in the bedroom where personal cares were also carried out. Staff decided to replicate the racing cars and rugby pictures from the bedroom wall by laminating them onto to the shower room wall. The challenging behaviour was reduced to a minimum and became a ‘win-win’ for both the resident and the staff.
Research published in 2011 involved 352 residents with moderate to severe dementia who were randomised into a treatment and control group. The treatment group had their pain managed proactively by being given regular pain relief. The medications used were Paracetamol, Morphine, Bu Trans transdermal patches and Lyrica (used to treat neuropathic pain). Scores for pain, agitation and aggression were measured at the outset and at the end of the trial. Residents in the treatment group had a 17 per cent reduction in their agitation scores with significant reductions in aggression and pain. While this trial has demonstrated that effective use of pain relief may reduce behaviour that challenges and the need for using antipsychotics, we still need to be mindful that any medication given has side effects.
Antipsychotics should be prescribed for psychosis and not as a first line approach for behaviour that challenges. By moving from a medical model of care to person-centred care we are helping the resident and their family complete the journey better than we have in the past. We have more challenges ahead as providers of care to meet the needs of those with dementia and those of their families.
We are making progress in our understanding and management of behaviour that challenges but the journey is not yet completed.
Beth McDougall is dementia care advisor for Bupa New Zealand. References available on request from firstname.lastname@example.org.