Healthcare services are not currently tailored to the complex needs and symptoms of people with advanced dementia, warn care researchers.
Researchers from the Marie Curie Palliative Care Research Department at UCL found GPs and paramedics were the main providers of medical care for people with advanced dementia rather than specialist health care professionals.
Their research revealed 96% of people with advanced dementia saw a GP in their last month of life and nearly one in five (19%) were seen by a paramedic in the month prior to their death.
Care homes, where the majority of people with dementia will die, were found to be poorly served by secondary healthcare services and GPs visiting homes were not supported by specialist services, which might include a geriatrician or an older persons’ psychiatrist.
The research also found less than a third of participants (28%) were seen by a palliative care team (34% were referred) and this was predominantly in the month prior to their death.
When advance care planning did take place, this focussed on resuscitation decisions and place of death, rather than the type and quality of care that the person would like to receive at end of life.
‘There are challenges that we face in terms of providing high-quality end of life care to people with dementia, including an uncertain prognosis, the difficulty in knowing when people are entering the terminal phase of their condition and when specialist services should be involved,’ said Dr Liz Sampson, reader at UCL’s Marie Curie Palliative Care Research Department.
‘However, this uncertainty needs to be taken into account in the planning, commissioning and delivery of services.”
‘Complex symptoms require active specialist intervention, multidisciplinary working and effective care coordination but many GPs are not supported by these services and feel that they do not have the time or knowledge to do this themselves.
‘The system isn’t currently fit for purpose. We need to see more resources provided in the community and nursing home staff receiving more support from external healthcare services.’
