People with dementia are turning to hospital A&Es due to a lack of access to community support, a new study has suggested.
Researchers at King’s College London (KCL) found that dementia patients were frequently met with misunderstanding and social stigma by local community healthcare services.
Dementia affects around 55 million people globally. This figure could reach 139 million by 2050 without an effective treatment, Alzheimer's Disease International has warned.
Previous research has shown that three-quarters of people with dementia had at least one unplanned hospital admission after their diagnosis.
Academics conducted a series of interviews with people with dementia and current and bereaved caregivers from across the UK.
They found that many patients were frequently turning to emergency departments as a “last resort” after failing to access clinical expertise in the community.
The study said that A&E attendance was associated with “higher rates of delirium, antipsychotic administration, hospital admission and mortality among people with dementia compred to those without”.
“Limited availability and access to community support contributes to urgent care use among people with dementia,” the researchers wrote.
Respondents described being forced to navigate a “fragmented, crisis-weighted” treatment process with “minimal guidance”.
Family caregivers, the first point of contact for people with dementia, described feeling alone in navigating a health and social care system that was likened to “swimming through porridge”.
Accessible support was judged by many to be more reactive than proactive and “geared towards someone at crisis point”.
“As dementia progressed, greater accommodation was required of the system, which was not always easily available, including timely primary care access, face-to-face clinical reviews, continuity of care, needs-based personal care, and access to dementia expertise.,” the researchers wrote. “This was made more challenging for those in more rural areas relying on public transport.”
Increased A&E attendance among people with dementia approaching the end of life was also associated with lower socioeconomic position, being from an ethnic minority background and multimorbidity. Decreased attendance was associated with living in a care home or an area with more nursing home beds.
Describing their trip to A&E, one participant said: “All the noise, the machines bleeping, a lot of background noise. People talking all over the place really makes your disorientation ten times worse. Because you can't focus on anything, there's just so much going on.”
Another said: “A&E isn't any place for someone with dementia. Hospital isn't any place for someone with dementia. We need to be in our own environment. We need to have hospital at home, if you like, simply because you go in the hospital, you don't come out at the same level as you were when you went in. I have seen it with so, so many of my friends.
“Just the noise, the lack of routine, lack of knowledge, lack of understanding, makes it just an alien environment. And that's why I simply won't go in anymore.”
Many respondents with dementia and caregivers found that dementia was not taken seriously and not seen as a life-limiting condition, due to social stigma that focuses on the neuropsychiatric symptoms of dementia.
Researchers called for a “committed prioritisation of long-term post-diagnostic care” for dementia patients to help increase access to community services.
Professor Katherine Sleeman, Laing Galazka Chair in Palliative Care at the Cicely Saunders Institute at King’s: “Like any life-limiting condition, dementia is worthy of dedicated care. Yet the quality of end-of-life care available and accessible to people with dementia varies across regions, ethnicities and levels of deprivation. As the leading cause of death in the UK today, we must ensure efforts focus on better supporting the near-million people living with dementia and the 700,000 family members caring for them.”
Lead author Dr Lesley Williamson, a PhD Clinical Training Fellow at the Cicely Saunders Institute, said: “We know that most people with dementia will visit the emergency department at least once after diagnosis, and that attendance increases towards the end of life. The findings of this study help us to better understand why and suggest that to improve the quality of end-of-life care for people with dementia, we must first respect dementia as a life-limiting condition, starting with proper post-diagnostic care, from diagnosis to the end of life.”
