Health research specialists from the University of Lincoln, UK, will examine whether carers’ involvement in at-home monitoring, such as noting changes in sufferers’ behaviour and feelings on a daily basis, could help them cope with the reality of watching their loved-ones deteriorate.
Researchers say directly involving so-called ‘informal carers’ – people looking after a loved-one – in evaluating their loved-one’s cognitive and behavioural patterns and disease progresses will help them feel empowered and more in control. This could improve their own mental health and raise their confidence in their abilities so they continue to provide a high standard of care, experts said.
It is anticipated the results of the study will lead to national improvements in the support offered to carers.
The study will examine what educational tools, support groups and advice are available to carers nationwide, identifying best practice and improvement opportunities.
Dementia – which includes conditions such as Alzheimer’s – is a progressive degenerative neurological disease with no known cure and without effective therapeutic medication. University of Lincoln scientists are investigating how it might be treated in the future. There are approximately 800,000 UK patients currently, and it is estimated that by 2050 there will be more than 100 million people suffering from the disease world-wide.
Dr Jo Middlemass, Research Fellow in the School of Health and Social Care at the University of Lincoln and a lead researcher of the project team, said: “Most carers of people with dementia are family members, especially in the early stages.
“Research demonstrates that most of these carers suffer from depression, and feelings of entrapment and guilt. These feelings act to undermine their self-belief in the care they are offering, thereby accentuating the depression and further undermining their motivation.
“If we can make sure that their needs are being addressed, then we can help to support them at home as long as possible.
“People involved in the daily care of people with dementia can more readily spot and comprehend subtle behavioural changes, and they are frequently fulfilling a crisis management role, requiring them to quickly adapt the level and nature of support to address unanticipated behavioural changes in those with dementia.
The home evaluations could also be used to better inform healthcare professionals about how the disease is progressing, as typically, patients will only visit their GP every six months for assessment.
“We will analyse research to date, to understand in detail the personal impact of being a carer for a patient with dementia, especially as the disease progresses and the need for more intensive care increases.”
The study will examine what educational tools, support groups and advice are available nationwide, identifying best practice and improvement opportunities, in order to develop a comprehensive “best-practice” educational package for carers. To make the educational and support resources accessible for everyone, they will be available online, in hardcopy and via workshops.
The goal is to create a standard education package for UK health authorities, such as GPs, hospital trusts and public health departments. It would contain information on the disease, the local care services available, support for carers, and advice on coping with the challenge of caring for a loved-one with Alzheimer’s.
The multi-disciplinary project team draws on expert research personnel from the Lincoln Institute for Health and the Schools of Education, Psychology, and Health and Social Care, and is starting to develop strong informal links with relevant dementia charities and AD research organisations.