I’ve spoken on several occasions about the world of fear and uncertainty our family was faced with when Mum was first diagnosed. This escalated when she was then sectioned and, like many families, we relied heavily on the health and social care professionals around us, looking to them to help guide us through this uncertainty.
As with many things in life, our experience varied from people going above and beyond to provide Mum and ourselves with an outstanding level of care, through to what can only be described as arrogance and at times passive aggressive behaviour. Yes, you read that right, let me explain.
“Dr X’s collaborative approach made a world of difference in Mum’s quality of care and our ability to cope with her condition”
I could easily use 20 blogs to talk about the amazing people who have supported us, but to highlight the stark contrasts in care standards, I am going to focus on two consultant psychiatrists who were involved in Mum’s care while she was in hospital.
The first – who I will call ‘Dr X’ – became an integral part of our support system from the moment Mum was sectioned and admitted to hospital. They didn’t just treat Mum; they treated us as a family unit, understanding that we were all affected by Mum’s condition. Their approach was holistic, encompassing not just Mum’s medical needs but also our emotional and psychological wellbeing. They quickly identified Dad’s generational stigma associated with Mum being sectioned and worked to provide him with the reassurance he required.
As Mum’s initial planned short-term stay was extended, Dr X ensured we were always updated on her condition, progress and treatment plans. Regular meetings were held where we could ask questions, express concerns and, most importantly, feel heard. This level of involvement provided us with a sense of control and understanding, which we realised has often been missing in the chaotic journey of dementia care. They recognised the importance of our input.
Understanding that we had valuable insights into her personality, history and preferences, our observations were not just acknowledged but actively sought out and incorporated into her care plan. This collaborative approach made a world of difference in Mum’s quality of care and our ability to cope with her condition.
Unfortunately, our positive experience ended abruptly when Dr X retired.
Their replacement – ‘Dr Y’ – brought a starkly different approach, one that felt clinical and detached. From the outset, it was clear that this new consultant did not value family involvement in the same way that their predecessor did, or in fact in any way.
My first interaction – one week after we had agreed with Dr X that Mum was not ready for discharge – was a telephone call from Mr Y telling me that Mum was to be discharged “within the next few days”. A call where they did not confirm who they were speaking to, but shared personal details with me on the presumption I was who they thought!
During this conversation I was told by Dr Y that they are “a medically trained professional” and that they assumed that “I wasn’t” and, therefore, my opinion was not “that relevant”. As starts go, we were not off to a flyer!
As time progressed, it was clear that they viewed Mum as a number on a spreadsheet rather than a patient with a loving family. Dr Y was continually looking to have Mum discharged, despite the wishes of the family and input from other professionals.
“You do realise that your Mum is the longest-serving patient on my ward.”
In something more akin to a school playground, our insights and concerns were often dismissed, leaving us feeling powerless and excluded from important decisions about Mum’s care.
Communication, which previously had been so good, started to become a real challenge, and at times a roadblock. For example, we would be informed about best-interest meetings on the morning of the meeting, so due to work commitments it became hard for one of us to attend. We felt we were more of an inconvenience than a crucial part of Mum’s care team.
The situation reached breaking point when – on one rare occasion when we were given prior notice – I attended what I thought was a general review meeting to discuss Mum’s progress. I was left waiting for over an hour before being shown into the meeting room, and asked to sit in a seat located so that I could not see the other attendees. Dr Y refused to shake my hand.
It became obvious very quickly that the meeting was not as I thought but to discuss Mum’s discharge, and that the hour where I had been kept waiting had been used to ‘get their ducks in a row’.
What followed was nothing short of unprofessional, with Dr Y refusing to speak to me directly, instead addressing me via one of the – very uncomfortable – professionals in the room. My job involves working in very challenging situations, so managing this situation and Dr Y was nothing new to me; I was able to realign expectations regarding Mum’s discharge quickly. However, not all families have the strength or confidence to question professionals, and it was clear that Dr Y was not used to it happening to them.
Despite offering Dr Y my hand at the end of the meeting, they still refused to shake it. In hindsight, this was representative of how the relationship between Dr Y and our family had completely broken down.
Our experience underscores the critical importance of family-centred care in the treatment of dementia patients. Dementia is not just a medical condition; it is a family crisis that requires a compassionate and inclusive approach. When families are involved and supported, the person’s care is more personalised and effective.
Family members offer invaluable insights and provide continuity of care that medical professionals simply cannot achieve alone. Our first consultant understood this and fostered a collaborative relationship that benefited everyone involved. In contrast, Dr Y’s disregard for family involvement led to a breakdown of the established partnership and added unnecessary stress to an already difficult situation.
Andrew Swindells is a carer
Commentary by Amy Pepper (Admiral Nurse, Admiral Nurse Dementia Helpline)
Andrew’s experience highlights the huge impact that our approach as professionals can have on the outcomes for people with dementia in our care, and also on the wider family unit. Person-centred care has been established for some time now as the ‘gold standard’ in dementia care. However, as things grow and evolve, we are becoming more aware of the importance of a whole-family approach to dementia care, and what is often termed ‘family’ or ‘relationship’-centred care. This is the model that we as Admiral Nurses work within, and Andrew’s experience highlights the critical importance of this approach. When Andrew and his family were included in his Mum’s care, they felt empowered, cared for, and there was a knock-on impact on the quality of care his Mum received. In stark contrast, the second consultant did not value the input of Andrew and his family, leading to feelings of frustration, a loss of control and ultimately impacting negatively on his Mum’s care. Andrew was able to effectively challenge the approach of the second consultant, however not all families feel able to do this. It is vitally important that we are advocates and role models for this family-centred approach when we are caring for families affected by dementia.
_12.png)
