Directly involving people who act as informal carers for those with dementia in evaluating symptoms and behaviour could offer improved insights for healthcare professionals, according to researchers.
The University of Lincoln researchers said that doing so could also help alleviate feelings of stress, guilt and isolation felt by many who fulfil these care duties.
“Caregivers have an important role to play in the monitoring of patient behaviour and behavioural triggers”
They said their findings highlighted a need for more structured educational programmes on dementia for informal carers, who often lacked formal training or support networks to depend on.
Information on disease progression, guidelines on dealing with challenging behaviours and financial and legal advice could better prepare carers about what to expect, said the researchers in the journal Dementia.
They highlighted that they hoped that their findings would lead to national improvements in dementia care, with a goal to create a better educational package for carers.
The researchers collated insights from carers and healthcare professionals and identified the main challenges faced by carers, as well as the type of support they want from health care services.
They noted that, currently, there are approximately 800,000 UK dementia patients, cared for by around 670,000 so-called “informal caregivers” comprising friends and family members.
Previous had found found that informal caregivers of people with dementia often display increased levels of depression and stress as well as poor self-rated health, noted the Lincoln researchers.
“The care being given by informal carers frequently goes beyond simply caring for a patient’s health”
They also highlighted that earlier work had identified increased feelings of entrapment and guilt leading to further depression and a lack of self-belief in the quality of the care that they can offer.
The new findings indicated that existing health and social care services were often fragmented, which could make communication between healthcare professionals and care providers difficult.
Healthcare professionals also stated that, while they had a theoretical knowledge of dementia, they felt they often lacked knowledge of living with the condition, which made it difficult to know how best to support carers.
Lead study author Despina Laparidou, from the university’s School of Health and Social Care, said: “The care being given by informal carers frequently goes beyond simply caring for a patient’s health and becomes a crisis management role which can exacerbate feelings of stress and burden.”
Study co-author Professor Terence Karran added: “Our research has also shown that caregivers have an important role to play in the monitoring of patient behaviour and behavioural triggers.
“It was felt that keeping a daily diary of symptoms and behaviour could help to empower caregivers as well as improving communications with healthcare professionals,” he said.
Meanwhile, Niroshan Siriwardena, study author and professor of primary and pre-hospital healthcare at Lincoln, said the research had “recognised a need for better information and education not only for carers but for healthcare professionals”.
This would create a “better and more empathetic understanding” of the physical and behavioural deterioration of the disease, as well as surrounding issues like financial pressures and modifying the home environment to compensate for patients’ every day difficulties, he said.