Dementia healthcare group Red & Yellow Care has created a new framework that aims to give providers the tools to enable people with dementia to have a ‘good life’.
The report, A Good Life with Dementia, draws on the expertise and insights of those working in the field of dementia, happiness and wellbeing as well as research with people with dementia and their carers. The framework is rooted in the notions of identity, happiness and fulfilment.
The report suggests that the process of diagnosing dementia is often “drawn out and needlessly stressful”. What happens after diagnosis was also highlighted as being remarkably variable with experts interviewed in the report agreed that there is a need for better post-diagnostic care and support.
The framework’s six parts are:
• How to better support people with dementia to maintain their sense of uniqueness and personal identity
• Achieving the right balance between memory-based activities and enjoying the here and now
• Ensuring people with dementia are able to experience meaningful human connections
• Ensuring people with dementia are able to experience a full range of emotions
• Taking risks – what are we protecting people with dementia from?
• Promoting good overall health with those who are living with dementia including physical and emotional wellbeing.
Red & Yellow Care founder Dr Bahbak Miremadi suggests a simplistic approach is often the best way to work with people who have dementia. “What’s striking is that this new framework is actually just stating the obvious,” he said. “It’s about the things we all take for granted, but which are eclipsed by the panic, fear and stigma that have come to surround dementia. We need to get back to core principles if we’re going to enable people with dementia to see past their fear, and make the most of what is potentially a long, rich and rewarding time of life.
“There are many systemic barriers in the delivery of healthcare, notably between physical and mental health. We have ignored the status quo and designed the ideal scenario; a care service that revolves around the individual. In other words, care without borders.”
With 43% of people surveyed for the report saying they ‘don’t think it’s possible to live a good life with dementia’, George McNamara, head of policy and public affairs at the Alzheimer’s Society, which co-commissioned the report, believes it is important for providers to address this stigma.
“This report shows that with the right care and support people can live well with dementia. However, sadly we know this is not the reality for many,” he said.
“We need a step-change in dementia care and support to overcome the obstacles and barriers to living well focused on increased awareness, timely diagnosis and more personalised care. While initiatives like Dementia Friendly Communities and Dementia Friends are making progress by breaking down the fear and stigma that shrouds dementia, we still too frequently hear that people with dementia and their carers experience loneliness and social isolation. All of us have a part to play to ensure a good life can be had with dementia.”
Dr James Warner, consultant psychiatrist at Central and North West London NHS Foundation Trust, who contributed to the report, added: “We need to bring a sense of holism back to dementia care… I hope this report shows that with a timely diagnosis and the right support dementia is not something to fear.”