Compassionate teamwork in working with the behavioural and psychological symptoms of dementia
Laurann Yen discusses the importance of understanding the behavioural and psychological symptoms of dementia to better support patients, their families and their carers.
They are creative and innovative. They look for better ways to communicate in order to help the person with dementia make some sense of the world and to be able to act and behave in ways that have purpose and relevance. They seek to create an environment where the person can be their ‘best self’. This is a team effort - it takes interest and curiosity in finding what can help, courage to experiment to find those answers and constant monitoring of outcomes and the opportunity to improve. The team need to be able to talk about the perceived ‘problems’ and discuss possible solutions; to agree on the approach and to support each other’s actions.
Compassionate leadership is vital. Really listening to staff, being interested in the problem itself and the person at the heart of it, helping in an appraisal of the options and the outcomes, and being empathetic to the concerns and challenges of the team members in their endeavours to improve the lives of the people for whom they are caring is imperative.
When looking at the management of behavioural and psychological symptoms of dementia in general practice, some different team issues arise. The person with dementia is an occasional visitor to the waiting room, and for short periods many people are able to manage a social situation- they may ask the same question over and over, but it will often be addressed to their carer, and the scale of the challenge for staff is limited.
Nonetheless, behavioural and psychological issues can make the reception team uncomfortable, or nervous of the impact of the person on other patients in the waiting room, and their wish is often for the problem to just go away, or for the carer to ‘remove’ the troublesome individual.
A good team will be ‘dementia friendly’ and make a difference not just for people with dementia, but for their carers and for other patients too.
Carers and people with mild cognitive impairment that our team has worked with in the last few months have talked about how well some practice staff and practice nurses manage the fragile needs of a person with a cognitive impairment or dementia. They talk of the difference it makes when practice staff are patient, take things slowly, and give the person with dementia time to take in what is being said or being asked. This may be especially so when the person is coming in for a process that might seem inexplicable or invasive- like vaccinations, blood tests or ear syringing. They talk about the warmth and kindness of reception staff who take time to make sure that the person understands, and is not confused by instructions or requests that they can’t process.
As a result, the person with dementia is not startled or made more confused by an unfamiliar event, and the visit often concludes successfully without distress. This might happen because an individual team member might just ‘be good’ with older people or people who have cognitive impairment, but ultimately it is the practice working as a team that has the best chance of delivering care most effectively for the person with dementia and their family.
The team approach will recognise the additional time necessary to take things slowly in a busy waiting room, or the stress staff might feel left to deal with an outbreak of raucous singing, or a failed attempt to find the toilet. A good team will be ‘dementia friendly’ and make a difference not just for people with dementia, but for their carers and for other patients too.
Does a family caring for someone at home whose behaviour is becoming unpredictable or downright problematic need a team? The answer is, yes! Most people with dementia live at home with a partner or family and as the condition progresses, may show more challenging behavioural and psychological signs that the family struggles to manage. In the film ‘The Long Goodbye’ Myrle talks about keeping the extent of the challenges posed by her husband Ken’s need for constant supervision from the rest of the family, and how much she feels it is her job to deal with it by herself, despite the impact on her own health.
People often feel that once the diagnosis has been made, they have to find their own way and manage as best they can – but this means that they aren’t getting the opportunity to discuss the issues, to test out potential solutions, or to be listened to in the way that a good team might do for its members.
The people who need to be in this ‘support team’ work in different professions and services, and in different places. Support services, like those run by Alzheimers Australia, bring together people in the same boat with ideas, humour and empathy that as professionals we often can’t match. Compassionate leadership in this virtual team is about facilitating connections and encouraging diversity, as well as offering the expert skills to help with planning for the next steps.
Laurann Yen is a research fellow with the Health Services and Policy Directorate at the Australian National University. She is leading the evaluation of the Timely Diagnosis and Management of Dementia Project, which provides education nationally to General Practitioners and Practice Nurses.