Patients with advanced dementia receive little support from community or specialist nurses, despite experiencing chronic pain and psychological symptoms, research in London suggests.
Researchers argued that healthcare services were not currently tailored to the complex needs and symptoms of patients with advanced dementia – now the leading cause of death in England and Wales.
“The system isn’t currently fit for purpose”
Their nine-month study involved 85 people with advanced dementia in the Greater London area, of which 79 were living at one of 14 nursing homes and six in their own homes.
Patients in the study received no contact at all during the nine months from community nursing services, including community matrons, practice nurses or night nurses. In addition, on average, only around 7% of participants received visits from specialist nurses during the study period.
However, contact with specialist nurses did increase to 12.5% among those who died during the study, up from an average of 7.7%. This increase in contact was probably because palliative care nurses were called towards the end of life, noted the researchers.
There was also found to be very little involvement from psychiatric nurses or medical specialists in palliative care and geriatrics. In contrast, professionals such as chiropodists, opticians and dentists had more regular contact with patients, said the researchers.
In particular, they highlighted that most support for dementia patients during the last month of their life was provided by primary care professionals, suggesting a “reactive” rather than planned response to needs.
“It is concerning that patients with end stage dementia are not accessing specialist services”
For example, 96% of patients saw a GP and 19% were seen by a paramedic, according to the findings from the Marie Curie Palliative Care Research Department, based at University College London.
The authors noted that care homes, where the majority of dementia patients died, were poorly served by secondary care services, and GPs visiting homes were not supported by specialist services.
The findings also showed that, despite the regular involvement of paramedics, there were relatively few admissions to hospital.
However, the researchers noted that this should not be taken as evidence that peoples’ needs were being adequately served in the community.
Alzheimer’s disease followed by vascular dementia were found to be the most common conditions among study participants.
The mean Bedford Alzheimer Nursing Scale score was 21, indicating participants were “severely impaired”.
At the start of the study, 53% of participants were assessed as being at very high risk of pressure ulcers, 22% had early signs of pressure ulcers and 19% had partial-to-full skin thickness loss.
“For many people with advanced dementia, care homes are essentially playing the role of hospices”
Pressure ulcer risk and prevalence “remained constant” throughout follow-up and there was no difference in risk between those who died and those still alive at the end of the study, said the authors.
In addition, the researchers observed that 11% of the participants experienced pain at rest and 61% on movement, while significant agitation was “common and persistent”.
In total, they found 76% of patients had “do not resuscitate” statements and less than 40% had advance care plans in place.
Meanwhile, aspiration, dyspnoea, septicaemia and pneumonia were found to be more frequent in the third of patients who died during the study period.
Advanced dementia patients ‘lack specialist nurse support’
Study author Dr Liz Sampson said: “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.”
“Complex symptoms require active specialist intervention, multidisciplinary working and effective care co-ordination,” she said.
Scott Sinclair, head of policy and public affairs in England for Marie Curie, added: “For many people with advanced dementia, care homes are essentially playing the role of hospices but without any of the specialist support services that are available in a hospice.
“This is not fair to the residents and their families, or the care home staff who are unable to meet the needs of their residents,” he said.
The Royal College of Nursing echoed the report’s findings, highlighting the importance of community and specialist nurse support for care home staff.
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Amanda Cheesley, the RCN’s professional lead for long-term conditions and end of life care, said: “It is concerning that patients with end stage dementia are not accessing specialist services.
“This is particularly important in order that care staff and their patients receive the support from specialist nurses with the knowledge and skills to care for people as they deteriorate at the end of their life,” she said.
She added: “We also know that when specialist care support is available in care homes, the confidence of staff and people who are receiving care is improved. However, carers are often left unsupported by statutory services and find it difficult to access the help they need.”
Ms Cheesley noted that, because dementia was a complex condition, staff needed high levels of skills and understanding to care for patients, particularly as they approached the end of their life.
The study – titled Living and dying with advanced dementia – has been published in the journal Palliative Medicine.