Only 1 per cent of
advanced dementia patients receive specialist care in their final months,
despite many having complex health problems, a study found.
Dementia patients are
instead most likely to be treated by a GP, even though family doctors say they
do not have the expertise or time to meet their needs.
One in five advanced
dementia patients are seen by paramedics in the last few months of their lives,
which experts said showed dementia care was largely unplanned and reactive.
The study will raise
new fears over the care of elderly and severely ill dementia patients in their
final months.
Researchers from
University College London followed 85 advanced dementia patients from
Greater London for nine months to see what care they received. Most were
living in one of 14 care homes, while six were in their own home.
The University
College London found care homes, and GPs visiting them, were ‘poorly
served’ and unsupported by specialists
The study found care homes,
and GPs visiting them, were ‘poorly served’ and unsupported by specialists.
Assessments of the
patients found most suffered a number of problems beside dementia, with nearly
two thirds in some form of chronic pain and more than half at high risk of pressure
sores.
Two in five had
difficulty swallowing. Between a third and half of patients also experienced at
least one psychiatric symptom, including agitation, depression, anxiety and
sleep disturbances. Over the study period, 14 per cent of patients contracted a
urinary tract infection, while a number suffered serious illnesses including
pneumonia and septicaemia.
Despite their complex
problems, only 1 per cent of the 85 participants saw a geriatrician or
specialist psychiatrist over the study period.
Patients also had
‘little contact’ with neurologists or community psychiatric nurses. They were
more likely to see a chiropodist, optician or dentist. Most patients saw their
GP and 96 per cent of those who died saw a GP in their last month, according to
the study, published in the journal Palliative Medicine.
Only 28 per cent saw
a palliative care team, who could have helped alleviate their symptoms, despite
34 per cent being referred. Those who were referred tended to only get help in
their final month of life.
Rob Burley, of the
charity Alzheimer’s Society, said: ‘Dignity and quality of life appears to be
playing second fiddle in a care system that is failing to meet the needs of
people living with dementia.
‘It is degrading and
frankly cruel that people with dementia are suffering chronic pain and
persistent psychiatric symptoms without specialist treatment.’
Lead researcher Dr
Liz Sampson, of UCL’s Marie Curie palliative care research department, said:
‘People with advanced dementia can have very complex needs.
‘Problems such as
severe agitation are common. People may think that this is just “part of”
having advanced dementia and little can be done. However, [patients] can
benefit hugely from specialist support.
‘Unfortunately, there
may be insufficient funding for specialists in some areas to support care homes
and their residents.’+2
Patients also had
‘little contact’ with neurologists or community psychiatric nurses and were
more likely to see a chiropodist, optician or dentist
SOURCE: Rosie Taylor
