Discussing palliative care for people with dementia living at home and in care homes
On a warm, sunny afternoon in an English pub at the Brighton Pier, I struck up a conversation with a lovely couple in their mid-70’s. After discussing many subjects including the weather, the beach, food and wine, theatre shows, Brexit, and their working life, they asked me what I do. With great pleasure, I shared my work and passion for research on end of life care for people with dementia. Both of them were baffled but curious and wanted to know why studying end of life care would be relevant for people with dementia.
I elaborated with reference to our recently published article in Age and Ageing on the “Quality of primary palliative care for older people with mild and severe dementia”. They listened attentively as I explained how we had assessed the quality of end of life care for people with dementia living at home and in care homes in Belgium, Italy and Spain. We found that although the countries differ considerably in quality, overall, there is an urgent need to reduce avoidable hospital admissions and to put more attention to regular pain assessments of people with dementia. For a moment, there was silence as they contemplated the implications of these findings. The man seemed unsure about the first conclusion but strongly agreed with the second, while the woman agreed with both. The man laughed, “I am glad I still don’t have it [dementia]!” and then more seriously continued, “But if I do, I hope that my pain is assessed and managed properly. If possible, I would prefer to live and die at home. However, I would want to go to hospital for necessary treatment.” I nodded, but then explained that many concerns are raised about people with dementia being admitted to hospital even if symptoms and problems, such as pain or high fever, can be managed at home or in their care home. The woman shared her own, stressful experience of being in hospital and agreed that it should be avoided if it is unnecessary.
This is just a snippet of our conversation from that afternoon, which highlighted the importance of discussing our research with people outside of academia and healthcare. For example, the couple were surprised to learn that pain was not measured in more than half of the people with dementia in our study. Pain is common among older people with dementia, and if not treated adequately may lead to depression, agitation and aggression, further complicating care. Pain is thought to be difficult to assess due to the cognitive decline inherent in dementia. However, our study suggests that poor pain assessment occurs even among people with mild dementia. For those with severe dementia, strategies, such as direct observation of behavioural cues and the use of validated toolslike the Pain Assessment in Advanced Dementia (PAINAD) scale are necessary. Furthermore, our study suggests that a third of people with dementia died in hospital, which also needs attention, as reducing avoidable hospitalisation at the end of life may prevent unnecessary and burdensome medical treatments, functional decline and death.
We need to ensure that not only researchers, doctors, nurses and other health professionals are aware of these issues, but also the public and the people with dementia themselves, and their families. Considered discussion of the evidence may lead to improved health policies and pave the way for more realistic and practical solutions that may enhance the quality of palliative care for people with dementia in primary care. Now is the time to act and start discussing ways in which we can further reduce unnecessary hospital admissions and improve pain assessment of people with dementia living at home and in care homes!