Key to dementia care lies in our communities – but with support

A column for outside contributors. Contact: agenda@theherald.co.uk

IT IS estimated 90,000 people in Scotland have some form of dementia (just under 16,000 of them in Glasgow and Edinburgh alone) and that figure is expected to rise dramatically in coming years. But why has the world been so slow to embrace challenges of the mind, when popular medicine caters comparatively well for diseases which affect individual or groups of organs? If you have a cancer diagnosis for example, you can expect to be seen by a specialist and your treatment prioritised within a very short timeframe. Why isn’t the same always true of dementia?

Dementia describes a set of symptoms that develop as a result of damage to the brain. Its symptoms may include memory loss, difficulty communicating and changes in mood.

In the later stages, people with dementia become unable to carry out everyday activities and will need increasing support. It is progressive and irreversible, and there is currently no cure for the condition. Alzheimer’s disease is the most common form of dementia and accounts for 50-70 per cent of cases. Vascular dementia is the second most common type.

Sadly, most funding for supporting people with dementia is currently focussed on crisis and end-stage care rather than proactive risk reduction, assessment, and earlier diagnosis.

We need a fundamental change across society in how we approach dementia, to prevent a bleak future where older people at risk of dementia and their families are severely challenged in an increasingly unfriendly and confusing world.

Initial steps have already been taken in Scotland where diagnosis rates are among the highest in the UK but thereafter there is a need for a community wrap-around which would see schools, employers, care providers and agencies, acting together to increase awareness and support, and gain a better understanding of ways to reduce our own risks of developing dementia.

The community wrap-around would include greater dementia awareness in the workplace with employers taking an active role in integrating awareness, education and risk reduction. They would also be needed to create dementia-literate working environments that are able to respond to the needs of employees who are also caring for loved ones living with dementia.

Our schools could educate children on the issues that people living with dementia may face and how to support them – an important step to removing stigma and creating a wider dementia-inclusive community.

We also need to establish the right health and care pathways to ensure people are supported from diagnosis until the final stages years later.

Through our partnership with Dementia UK, and 25 years after the first Admiral Nurse was appointed in the UK, we have just appointed Scotland’s first Admiral Nurses to help achieve that.

These are specialist dementia nurses who support families and work across the health and social care system, to ensure the needs of people with dementia are addressed in a co-ordinated way. This helps to reduce contact time with GPs and social workers, and avoid unnecessary hospital admissions.

The Admiral Nurses will support people with dementia who live in our care homes, and those in the wider community, regardless of whether they are our customers.

Contrary to popular belief, families often don’t see care of a loved one with dementia as a burden that they want to be relieved of, even in the face of considerable difficulty. Many family carers say they’re happy to do the care but they need the support to be able to cope, including respite from care, to be able to continue.

As specialists, Bupa Admiral Nurses are able to put personal care plans together and work with relatives and carers to make the plan a reality.

For those who do require residential care, rising expectations of standards and quality in care demonstrate the need for an informed, educated and supported workforce in care homes – a goal that Admiral Nurses are also working to.

Creating dementia-friendly and inclusive communities and workplaces, and encouraging people to reduce their own risks of developing dementia, will help transform the current situation.

Even now, almost all of us knows someone who is living with dementia, whether that’s a friend, neighbour or family. We all have a personal interest in changing our communities. Professor Graham Stokes is director of dementia care at Bupa Global.