I chose this title because I know what reaction it will receive from those within the public leadership roles in dementia care. It is the use of these words that needs some attention and some balance as we experience an increase in the numbers of people entering care services that are presenting with suffering in observable and measurable ways
On one hand, I am one who fully supports the removal of stereotypes and attitudes about dementia and supporting people living with it or supporting those who have to care for them. I am in admiration for the people who live with a diagnosis of dementia and are in the public domain, who sing the chorus of person centred care and respectful care modelling as they inform us that “they” are not suffering from dementia and don’t suffer from the disease. They do not like the language and refuse in many of their statements to allow this to be acknowledged around them.
On the other hand, I am also a long-term carer/nurse and health professional who believes in the application of health literacy and evidence based healthcare when it comes to having knowledge about connecting and caring for the person with dementia and particularly in the late/advanced and end stages of the disease. Given that everyone is different and everybody experiences life with diversity we often see much suffering in late and end stage dementia, given the context of each scenario and the person themselves.
When going through the literature that is available, there is much information regarding the types and presentations of suffering in people with dementia in the late/advanced and end stages. In fact, there are specific screening and measurement tools that can be utilised by nurses in assessment and planning for appropriate care. The first manifestation and visual signs of suffering in late/advanced dementia is that of being ‘not calm’ and is the first item of the Mini-Suffering State Examination (MSSE) scale developed by Dr. Bechor Zvi Aminoff, MD, PhD and described some 11 years ago.
His work has continued to enlighten and support us as clinicians and carers when we are faced with the difficult processes of interpreting what it is a person with advanced dementia is trying to tell us or is experiencing, when they have lost the ability to communicate. What we do know and should understand is that a person with even severe cognitive impairment still has their emotional connections and feelings in their brain. They may be experience something that causes them to suffer in some way.
Lately, my lived experience is that there is an increase in the number of people entering aged care facilities with late/advanced and end stage dementia. There is also a recognisable number of current residents who have progressed in the trajectory and have reached the downward and dying phase of the disease. My own concern is that we are at risk of missing critical observations and identifying a person’s needs in relation to their suffering if we continue to force the ideology and belief that people with dementia do not suffer from it. Lately, I have been very busy with a number of services going through clinical leadership and education on this exact issue as the staff are wrestling with complex care due to missed diagnosis and the opportunity to apply some more aggressive nursing intervention when needed to ameliorate any issues with an individual. Many carers are confused when they see something they feel is suffering, but have been taught this is not the case in dementia.
Given that we have more care workers than registered staff on the frontline in care, this risk increases with the lack of clinical knowledge and expertise to the issue. Add to this the low level of skills in the use of emotional intelligence and the use of available heuristics, suffering in an individual may be presented, yet not identified. The other case is that it may be identified, however not acted upon as we are teaching staff not to focus here, as people with dementia ‘do not suffer from it’. Something I am informed of quite loudly if I raise the use of the words.
I ask (as a clinical leader) that we as an industry and a collective, strive to balance the models of care and the services being provided with good evidence based health care, value in the medical model at some point and learn to teach good health literacy.
We need to acknowledge that some people with dementia will suffer from its impacts given their own lived experience of the disease. Their cultural, social-economic backgrounds and histories that are individual and unique and as such they may reach times that ’emotionally’ have heavy elements of suffering attached to them. It is important for all carers and professional staff not to disconnect to what it is we see, feel and understand to perhaps be suffering, for sake that they may offending those with the loudest voices and opposite opinions to this sometimes-blatant fact.
If we are going to advocate to remove the stereotypes that surround dementia…. then let’s not invent new stereotypes to replace them. People with a diagnosis and sitting in the earlier stages of the disease have a large and important voice to share with those of us that do not have the diagnosis and are dedicated to good care. I believe that it is important for this voice to be heard, but, also respect the space that these people are to be supported with good balanced health literacy and evidence based information. I would do this so that they too understand that not all people with dementia will have the same empowerment skills to speak out or self-advocate. Not all people with dementia are at the same stages and the advanced stages are often challenging for others that partner the care. Not all people with dementia are equipped to self-manage when considering co-morbidity and chronic disease impacts and globally there would be much suffering in context to having dementia in a poor and low cultured society unlike Australia. In the fast and loud movement of the dementia platforms, we should be mindful of truth, and difference as advocated, but with a fair balance to all others involved.
I have not written this article to rattle any cages and upset any person, rather, as a clinical leader I wish to be courageous and to be a voice of direction, reason and support to all care workers, health professionals, and any other human being experiencing what they know is a suffering and dementia.